• Why won't they treat the side effects?

    Asked by moonmaiden on Sunday, April 10, 2016

    Why won't they treat the side effects?

    I'm at the end of my rope, I can't do this anymore. They put me through surgery, radiation, chemo and herceptin, declared me cancer free, and now I'm supposed to just go on with my life. I don't have a life anymore. I'm just tired all the time, and can't think straight, and all they want to do is keep throwing more antidepressants and anti anxiety pills at me. All I want to do is sleep. My house is a mess, I can't work, I can't concentrate on anything, I've been in treatment for depression for four years now, it isn't working! The XXX oncologists seem to think it should be enough for me that I'm alive. I'm not functional. None of them are willing to offer me any treatment for the ongoing fatigue. They just tell me to go to a shrink who keeps telling me to take more of the stuff that has already taken my ability to function. Why don't the oncologists spend any time at all studying to impact of cancer? It's not enough just to keep existing.

    200 Answers from the Community

    200 answers
    • DoreenLouise's Avatar
      DoreenLouise

      I suggest you start with baby steps......go for a five minute walk outside several times a day until you can increase your activity. I find yoga and walking very good for fighting both depression and fatigue. I try to walk 1/2 hour daily outside and I live in Ohio.

      I have read numerous articles on depression and cancer. Learn about diet and try to balance omega 3s and 6s, eat grass fed beef, open range eggs, wild sea food, organic vegetables. For me, I have fought depression since my teen years and have had counseling on 3 separate occasions, last 20 plus years ago.

      I have noticed that I no longer experience depression like I did prior to cancer diagnosis. I think that the healthy diet I now consume has helped my depression as well as is killing any cancer cells left in my body following treatment.

      Be strong, find a purpose, reach out to friends and loved ones.

      I was exhausted when I sat down to read what next after having cooked for a couple hours. I am a little less tired after having shared with you my journey. Best wishes and God Bless.

      almost 4 years ago
    • TXHills' Avatar
      TXHills

      My oncologist has told me that the only research-based treatment for fatigue is exercise. I agree with the above. Even if it's just for two minutes at a time. Put on some music and just walk/dance for one song. If you get up to three songs, you've done close to ten minutes! Being outside can also help your mood and fatigue. It is a long slog to recover from cancer and its treatments, and you will likely have to adjust to a " new normal" which is different than before cancer.But you do have the power to feel better than you do right now. Best to you.

      almost 4 years ago
    • LiveWithCancer's Avatar
      LiveWithCancer

      I agree that what you're doing is not living.

      I agree heartily with DoreenLouise - please try to start getting some exercise, even if it is just a little bit at first. It seems very counter-intuitive, but exercise makes such a big difference in your energy levels and how you feel mentally and physically. I have been indoors and inactive, for me, far more in the last two weeks because my agility classes have been canceled. I find myself getting too tired to do anything, bored to tears ... but with that coming out as fatigue, and starting to get depressed and sad and not wanting to do a thing. Thank God my classes are starting back up this week!!

      Again, like DoreenLouise suggests, can you find some hobbies that you really enjoy? When I first began chemo, I was too sick and fatigued to do much. I began to go sit outside with my camera and take pictures of my dogs, rocks, birds, grass, leaves, whatever struck my interest ... even a little. It gave me something to concentrate on and think about ... and ultimately, enjoy. I started feeding the birds and putting out food for hummers so that I would attract more and more birds (and squirrels). My birds were not special - mainly sparrows - but I had so much fun trying to photograph them and watching their antics.

      Be sure you are drinking plenty of water. That's really important!!

      Good luck, @moonmaiden!! I hope things get better for you.

      almost 4 years ago
    • moonmaiden's Avatar
      moonmaiden

      I already do all that, and no, I can't have a "new normal". I need to work for a living, and I can't even manage my own home. I don't have time for baby steps, I've been out of chemo for a couple of years now, and if it doesn't get any better, I will lose my house. And chemo brain is not depression, it's a negative impact of chemo. Most doctors don't take it seriously, and so don't bother to do any research on what it really is or how to treat it, and just tell you to go to a shrink who also doesn't know what it is or how to treat it, plus the normal eat better and exercise stuff, I need more help than that. I did find some articles online about oncs who were treating their patients for the chemo brain with small doses of a pill, but when I asked my former onc about it, his response was, I'm not going to give you something just to help you feel good." Which is why he is my former onc, because he refused to acknowledge that there was even any problem, and chalked up side effects to anxiety and stuff. Chemo brain is a medical unicorn, it doesn't exist any more than fibromyalgia or chronic fatigue syndrome, so it doesn't get diagnosed, or studied, or treated. The doctors dismiss it, don't study it, and don't care enough to find out what is actually going on and try to help it. After trying to talk to 2 doctors about articles I found about the pill some doctors were using to treat chemo brain, I have given up, because when I bring it up to them they act like I should be ashamed for asking for that sort of help. I don't have years to get better, I'm broke, I can't afford not to work, and I can't even take care of my most basic needs anymore.

      almost 4 years ago
    • moonmaiden's Avatar
      moonmaiden

      @LWC I got through chemo by crocheting hats as a hobby.
      I'm a couple years out from chemo and still having issues. I already know about diet and exercise, I used to routinely pick up 50 pound cases of merchandise on a daily basis before chemo.

      almost 4 years ago
    • moonmaiden's Avatar
      moonmaiden

      As it is, I had to pretty much just about grab my primary by the throat and demand that she test me for rheumatoid arthritis, because my onc didn't want to hear about my aching joints, a common side effect of hormone blockers, and didn't want to treat that either. Or look into it. How it turned out was I demanded to be tested for RA, and it turned out that it wasn't RA, but there was actually something wrong that was making my joints hurt. It turned out to be lyme disease, which could be a lot worse by now if I weren't screaming for help. I shouldn't have to be having a nervous breakdown before I can get my doctors to listen to me and investigate further. Not to mention that they don't want to let me try to one medication that some doctors have tried for chemo brain, and have had good results with on low doses. The doctors that actually have been trying to treat chemo brain, haven't been using antidepressants or sedatives for it.

      almost 4 years ago
    • BoiseB's Avatar
      BoiseB

      Moon Maiden Have you checked out your local YMCA. My YMCA had 5 different programs for cancer survivors. One is sponsored by the LIVESTRONG foundation. Your Dr.s are wrong about fatigue it has causes and help. You may be tired because you are anemic caused by the chemo. If you could get your PCP to refer you to a nutritionist. who could recommend a diet to meet your needs. Your PCP might also order a vitamin B12 shot. The doctors know all about the side-effects of Chemo and nothing about the late effects of cancer treatment.

      almost 4 years ago
    • gonewest's Avatar
      gonewest

      http://www.cancerresearchuk.org/about-cancer/cancers-in-general/cancer-questions/chemo-brain

      http://www.icctf.com/

      Hi. I really am so dismayed you are enduring these things. Above are a couple of links I found interesting, maybe they'll give you more information. There are several drugs listed that can be useful in combating that very unique form of fatigue caused by cancer, treatment or both. There are several studies done with breast cancer survivors. Love to you. Chris

      almost 4 years ago
    • LiveWithCancer's Avatar
      LiveWithCancer

      I am sorry your doctors don't listen to you. Seems like a lot of people here post of doctors who don't listen. It makes me all the more grateful for the doctors I have. They listen and they act, especially my PCP.

      almost 4 years ago
    • Razmataz's Avatar
      Razmataz

      moonmaiden.... So sorry that the pain and fatigue has not gone away... I can't imagine going as long as you have and still having the chemo brain and the fatigue... I'm one yr this week and most of my pain and chemo brain has disappeared just in the last month...Like you, just a few months ago, I was annoyed and frustrating by people telling me that I would get "use" to my "new" normal. I too felt angry and wondered why I fought so hard to live when I could only do 25% of what I did before. I went to a PT...2 actually who helped me resolve the pain in my joints. They gave me stretches and things that were doable and only took a few minutes a day...but made such a difference. I've gone to them since last august and have just graduated a couple weeks ago. Now I'm also trying to exercise (only 10min) a day but its something. This past week I've realized that when I wear myself out then my mind doesn't function like it has been for the last several weeks. Honestly it kind of scared me but also reminded me that I need to take care of myself. So what am I trying to say? If bones/joints are still aching...demand that they give you a bone scan... If everything is clear, then ask to be referred to a PT. I was only able to get back to work f/t in february. I totally get not knowing where your rent check is going to come from or food for you and your family etc... Sometimes, I think that Oncologist really don't know the extent of our pain or discomfort. They have that stupid pain scale and if your like me and can cope at all tend to say well 3 or 4 at the most 5... I did this til radiation one day when I was grumpy irritable and had enough and I screamed its a 7... I immediately got the medication I needed. Try to have your oncologist slow down enough to really hear you. Tell them what you would like them to do... Are you sleeping ok? If not consider taking sleeping meds just til you feel rested again then you can go back off... So sorry. Hang in there. I will say prayers for you tonight.

      almost 4 years ago
    • Razmataz's Avatar
      Razmataz

      Just thought of something... Have they done blood work and tested for anemia? Just had that thought... Wishing you the best.

      almost 4 years ago
    • geekling's Avatar
      geekling

      I, too, was inconsolable when it became obvious what I had lost and that being, effectively, cancer free equated with a smaller life and a diminished me..On top of everything else (pain, scarring, loss of abilities) the medicos (most likely)gave me a blood disease along with botched chemotherapy. I can't prove it but the docs told me (after months of argument) that they had taken a correct test and found a blood disorder but had not informed me (all that bloodwork they do) because they thought i already knew about it despite it appearing nowhere in that detailed history we all fill out.

      It sux and I have been single and grieving for over 5000 days. Like Doreen, I have gone t great lengths to improve my diet and quality and quantity of movement. It does help ... little by little.

      Remember please that you n did not get sick overnight and you won't bounce back that quickly either. Meanwhile the odds are quite good that you have a big dearth in your body's nutritional needs. Maybe your doctor did tests and decided you are "normal'. That is ridiculous as you haven't been normal since you put yourself in doctor care. I have taken 5000 units of D3 daily for some time. One year doctor screamed way too much" and I ignored doctor. The next year doctor wanted me to take 50,000 units at once.Again I ignored the doctor.

      im sure you have loads of calcium and copper handy but a LOt of folks are deficient in magnesium (green leaves) and in the much more common silica which the body also needs to make strong bones, including your teeth. I wish i had understood this back the but it took time to learn all this 'stuff'. These days I use a lot of Nature's herbs. Oatstraw, used as a medicinal tea,contains silica which it imparts to you (as do other specific herbs). it is nearly tasteless and actually makes you happier (improves your mood) because your body is getting enough of a mineral it desperately needs. There are lots of herbal assists. They de-stress a freaked out and impoverished Not on;body.

      I forwent all meat and learned to thrive on raw & living food methodology. I have been an organic kid since I was old enough to have my own household. I got serious about sprouting.It made a difference.

      It was more thsn 7 months after treatments that I felt strong enough to attempt to get stronger at a gym. I struggled to complete two whole minutes on an elliptical machine. I kept at it, day after day. i got a physiotherapist and let her help me. i both used machines and did floor exercises. I remembered a man from my youth who had told me that yoga is healing as I giggled through the movements and asked about the point of it all.Yoga changed me from a weak and drowning kitten to a very strong chicken.
      "
      If your State has marijuana dispensaries, allow me to recommend an oil called "Phoenix Tears".. Not only does it remove the anxiety (and just a teeny bit about the size of a grain of rice) but it is what started this road to serious decriminalization of weed by healing a bunch of cancerous Canadians. If you are sure it is 'chemo brain' rather than anxiety, you need more essential fatty acids and oils ..at minimum. back to nutrition.

      Don't give up hope. There is always another way to skin the proverbial cat. I kept refusing happy pills and tossing Zoloft & Wellbuterin samples and scripts until I finally got a proper diagnosis for the teeny tumor to which I'd been pointing and asking to have it removed from my person. It took 13 years. I still wonder if I saw the worst of the profession or if I was being used as a lab rat to grow the tumor to a more financially viable size for the docs.
      .
      Breathe. More deeply. More oxygen taken in is calming to the body and the mind. BTW, a good psychologist is better than a psychiatrist for your purposes. The latter only prescribes pills but the former is paid to listen to you and make comments. Find a right one and you have a luxury hard to do without except finding a good fit for yourself is a difficulty.

      I'll tell you tomorrow if it ever gets as good as it was or better. Today I can tell you that it can be a whole lot better than you describe. look into meditation too as it can only help.

      www.etsy.com/shop/rawmaven

      Best wishes

      almost 4 years ago
    • spdsgrl's Avatar
      spdsgrl

      I am sorry you are going through this. I don't have much to add other than my empathy. I do agree w BoiseB. I am meeting with the LIVESTRONG people at our YMCA on Friday. I heard it was a great program. I am in active treatment, but I know it is designed for survivors and patients. Good luck!

      almost 4 years ago
    • geekling's Avatar
      geekling

      If you actually have Lyme disease it becomes even more important that you clean up your diet and move around as you can

      I used to take me all afternoon to walk 3 miles through a seaside park (when I got up to it)

      almost 4 years ago
    • geekling's Avatar
      geekling

      It used to take me all afternoon to walk three miles but now, two years and some weird pharmaceutical drugs later, I can do the same distance in about an hour. I also went to California where I strolled along for as much as 8 or so miles in a morning and began another long road back to earning a living.

      The PTSD can be alleviated somewhat wven with a Lyme complication.

      almost 4 years ago
    • geekling's Avatar
      geekling

      Also, find a disability attorney and make application.

      almost 4 years ago
    • ChildOfGod4570's Avatar
      ChildOfGod4570

      I am so sorry to hear you are going through this. We expect to feel more like ourselves once we've healed from the physical side effects of chemo and radiation. I have said it so many times on h ere, the oncology team all tooo often neglects the emotional needs of a cancer patient. Personally, I do not agree with filling people with pills unless there is absolutely no other choice left. Would a B 12 vitamin help you? I'm thinking of asking my oncologist at my next appointment, as I am several years out from active treatment and still deal with fatigue despite my exercising regularly and eating healthy. I also take melatonin to help me sleep at night, and my chemo nurse had recommended it to other patients, so I know that is safe to take both during and after cancer treatment. I sure do hope you can get a doctor who will listen to you and that you feel better soon. HUGS and God bless.

      almost 4 years ago
    • PaulineJ's Avatar
      PaulineJ

      I understand it's different for everyone,I feel like I found my twin.What you're experiencing is exactly like my life since 2012.Except going to phychiatrist/phycologist or social workers.I took myself off the arimidex in 2015.I couldn't take another dayfor another 2 1/2 years more.The oncologist didn't seem to care..Excercise nor B-12 shots don't do a thing for me.Sorry I can't have any suggestions for you. :( :( :( God be with us. He has overcome the world.

      almost 4 years ago
    • Sharlie's Avatar
      Sharlie

      You say they declared you cancer free and sent you on your way. Did they prescribe hormone blockers and have you been taking those? I took Tamoxifen for just three months and couldn't take it any more, so I quit them. The side effects were just too much. Most oncologists demand that patients take them and now they say we need to be on them for 10 years. Honestly, I think that is more of a financial decision so that the pharma companies can continue to make money. My main concern is are you on a hormone blocker of some sort and if so, would you consider stopping it to see how you feel. I'm truly sorry things are so rough for you and I hope you can find some peace. Cancer changes everything and I agree that the doctors neglect the emotional aspect and don't realize just how much the treatment takes out of a person physically.

      almost 4 years ago
    • pixiesmom's Avatar
      pixiesmom

      please find a doc in your area who specializes in Integrative or Functional Medicine. The therapies have cost you to lose A LOT of nutrients and minerals, and you need them back in order to have energy

      almost 4 years ago
    • lisahal's Avatar
      lisahal

      Have you researched your medication? Some anti-depressants cause depression and even suicidal thoughts. I was only on them two weeks and I could not get off the couch. Before them I was quite functional. They made me feel horrible and took about two weeks to be rid out of my body and then I felt fine again. When I feel stressed I smoke weed instead of popping a Xanax. I used to be able to hike 10 miles in my 50's, after treatment I could not make it down my street. It is baby steps. A little farther everyday. Today, I can hike about four miles. Go out in nature. I suggest you go camping somewhere beautiful for at least a week.Our circadian rhythm is set with the rising and setting of the sun. It is proven that a week in the woods will restore your sleep rhythm. You have to unplug from the modern world, no devices. Yoga and meditation also help. I still have foggy brain and I play games on the computer to help your brain get going again and making those connections. I stopped watching the news and very little TV. I listen to music most of the day and since I broke up with my TV I feel much better. Then there is that joke, before you start medication make sure first that you are not surrounded by a-- holes. Best of Luck to You!!!! Lisa

      almost 4 years ago
    • gap122041's Avatar
      gap122041

      I didn't read all the comments so I don't know if any of them suggested praying or not. But that would be my 1st step; pray and pray some more. God alone knows how to help you; pray and listen and He may give you the peace you need but you will have to be sincere. He will know if you are just seeing if this will work or really have faith in Him. All I know is He has helped me with my cancer and no He has not cured me and may not but I don't worry about it and that alone is a blessing. I am happy and contented with where I am today. God bless you is my prayer.

      almost 4 years ago
    • jackiwalkr's Avatar
      jackiwalkr

      I am 1 1/2 years out from chemo and still have chemo brain. It's scary and I run a construction business and so I write everything down. My office is covered with post it's. I put all appointments in my phone calendar so it will buzz me. Fatigue is getting better I try to walk 6000 steps a day I get close most days. But it's hard. Surviving is harder than the treatment for me.

      almost 4 years ago
    • tuckercat2's Avatar
      tuckercat2

      MoonMaiden, I am so sorry you can not find a doctor who will listen to you. The remark I am not giving you this just so you will feel good is disgusting! Antidepressants are used for that purpose, does this doctor feel you shouldn't need those?

      I am lucky, I have a caring OC and I have just found a PC doctor who listens and knows this is not I will get over it kind of thing.

      When you are in such a place it is hard to do anything else. I have a great boss who stood by me through the operations and is understanding about the inability to think of a word. I thank God for these people.

      Suggestion: I don't know if this is possible or doable, but can you email the doctors who are trying the medication and ask if they know of a doctor in your area? I live near Houston, Texas which has a very large medical footprint so for me that could help.

      Survivors: Do you have links that might help her find a doctor that would me more in line with what she needs? I will try to find a link to a doctor referral that looks into helping with life on hormone therapy.

      I am not able to do everything I did before. For me work is about all I can handle.

      My thoughts and prayers are with you. HUGS!!!!!

      almost 4 years ago
    • CAS1's Avatar
      CAS1

      I think everyone has offered great advise. I have learned a great deal as well. So thank you for asking the question and being open about your issues. Clearly you are not alone. It's not in your head.

      Just wishing you the best outcome.

      almost 4 years ago
    • moonmaiden's Avatar
      moonmaiden

      My blood work is fine, I'm not anemic. It's only the last few months I haven't gone around worried about falling, my coordination is still a little off, but at least my hands don't tremble. I'm sleeping too much because of the antidepressants and anti anxiety meds they want me to take. Then I get more depressed because I am un productive and my life is sliding away from me. I went through a divorce at the same time, and can't wait to get better. I went into pt right after chemo, I didn't even ask a dr to refer me, I just went, and an exercise program geared to survivors as well. I want to get into pt again, but money is an issue, my insurance beats me up over deductibles, and I'm not fully employed. I'm taking Aromasin, I went through all of the hormone blockers before deciding I can manage on this one, but it bothers me to have to take it. They insist that I must. The bone aching doesn't bother me anymore since I made my primary test me for RA, and found out that I had lyme disease. Since treatment for lyme disease it hasn't been a problem, but I really had to demand that somebody test me and rule out some stuff, because the bone pain was so bad that I didn't want to continue the hormone blockers. I really don't understand why either of my oncs wouldn't want to rule out other things if they want me to keep taking this stuff, I'm very puzzled that they don't, I would think it would be in their best interest to want to rule out other stuff, but go figure. Same with the primary. Instead the dr's are meeting these issues by just taking the attitude that's just how it is, learn to live with it, and if I'd done that, I wouldn't have found out about the lyme disease, and would be way sicker now. I don't have a Y. I go out on youtube to the karaoke section and memorize a new tune each month to help my memory and breathing. I took up lapidary to improve my attention span, because when you are sawing and carving stones you had better be present, or you will get hurt. I try for an hour a day, sometimes I make it through the whole hour, other times I need a break in the middle. I pray St. Jude's Novena and the 23rd psalm while my hands are busy with the stones, and have been blessed to publish my thanks to St. Jude who has helped me with the financial stuff while I seek to improve my mind and attitude through the prayers. A lot of the stuff they say to do like making lists is stuff I already did in the first place. I'm waiting for the weather to straighten out, I am outside all the time and in the woods or by the river any chance I get. "Integrative functional medicine". That's a term I've never heard before, and something none of my docs have mentioned. @Sharlie, yeah, they used to do it for 5 years, now they say 10, my thoughts on that is that they generally don't really know what they are doing, and that a lot of patients are really guinea pigs while they try to find out if 10 years is better etc. @Pauline, you will never know how much it helps to know you are not the only one after so much time! My onc cares greatly if I tell him I want to stop the hormone blockers, I went through all of them before settling on Aromasin, and it took a lot to find out that the source of my bone pain wasn't even from that. I take Calcium, Magnesium, prescription strength potassium, diatomaceous earth, all kinds of vitamins and minerals. I've been putting off applying for disability because I don't want to think of myself as disabled. I really appreciate all the hugs, prayers, support and advice, I just wish the doctors would read this blog and understand that a patient is not a set of symptoms, but a whole person with a life that needs to be treated. Living just to keep existing doesn't cut it for me, I need to have a life worth living, and don't at the present time.

      almost 4 years ago
    • JNW's Avatar
      JNW

      I'm sorry to hear your plight. 1.5 years out from treatment and I'm still having issues. Between pain and insomnia, I'm not sure if it's chemo brain or what. As for your house, there are organizations that you may qualify for. Exercise and diet are smart moves, though more studies are coming out that many brain things are helped by learning something new. So, I got some gel pens and an adult coloring book and it's relaxing. I'm also taking a makeup artistry class, thanks to grant money out there for cancer patients/survivors and displaced workers. I feel like learning new things is a big help. If you have an advocate, see if they can help you in various ways. Good luck!!

      almost 4 years ago
    • tuckercat2's Avatar
      tuckercat2

      Moonmaiden I want you to know you are not alone. I also have wanted to quit the hormone therapy and I agree that we are the guinea pigs for the decision of how long. More troubling to me is that no one knows what a total lack of hormones will do to us. Please hang in there. Wish I could do more to help.

      almost 4 years ago
    • moonmaiden's Avatar
      moonmaiden

      @ tuckercat2, yeah, I worry a lot about the long term effects, even after menopause a normal woman still retains some of her hormones, and they're telling us we can't have *any*.... Another thing that I wonder about is that when I was younger I tried progesterone creams, wild yam etc, and wonder if that had anything to do with getting er+ pr+ breast cancer later.... Just because it's "herbal" or "natural" doesn't mean it's necessarily good for you. I used to eat a lot of soy based products as well, I miss fried bean curd. But main reason I ate it was because it was supposed to be so good for an aging woman....
      https://www.youtube.com/watch?v=dFJopF6WJNw

      almost 4 years ago
    • pattiep's Avatar
      pattiep

      Didn't have time to closely read all answers. I found that I have a much decreased level of activity 3 years after treatment, exacerbated by constant eye operations and procedures. The chemo ruined my tear ducts , gave me dry eye, ruined my lashes, rims of my eyes etc etc. some one mentioned vitaminD3. My primary care found that I had the lowest level he'd ever seen. I'm still taking a high dose. That helped a lot. I have also found that forcing myself to go to yoga has helped me to feel a bit more energetic but also to relax. I'm always stressed and I think that saps a lot of my energy. I do take an antidepressant and anti anxiety meds but it only does so much.
      The constant nature of my eye problems is seriously bringing me down. I'm considering a change in meds for first time in 20 years. I was more upbeat during chemo treatment because I thought it would end and everything would be normal again. Wrong!
      Wishing you all the best.

      almost 4 years ago
    • moonmaiden's Avatar
      moonmaiden

      @pattiep, I'm sorry to hear you're having so much trouble with your eyes. While I was in chemo my eyes started leaking constantly, my mom mentioned that happened to my dad all the time on account of his eyes were too dry and gave me some moisturizing eye drops (as opposed to for allergies, etc) to try, and it helped me a lot. Yeah, when you try to brace yourself for what to expect they just keep saying that everybody's different and don't tell you about things like dry eyes or painful bloody fingernails or that your entire gi tract will have chemical burns. Honestly, if it ever comes to that again, I may just pass!

      almost 4 years ago
    • pattiep's Avatar
      pattiep

      @moonmaiden I will NEVER take taxotere again! EVER! I figure blindness would be the next step- only semi- kidding

      almost 4 years ago
    • moonmaiden's Avatar
      moonmaiden

      Pattiep I sure can't blame you there! Have you asked an opthamologist if they can find out about your long term impact from chemo? Is taxotere the culprit? I'm just asking on account of they normally mix a variety of drugs, not just one....I think I had that one too though.....

      almost 4 years ago
    • pattiep's Avatar
      pattiep

      The oncologist's aprn said if my tear ducts had been irrigated during chemo this would not have happened but she didn't think it was serious enough. The oncologist still insists she has no idea how!!!!

      almost 4 years ago
    • Sharlie's Avatar
      Sharlie

      ( ( ( moonmaiden ) ) ) Your statement "I need to have a life worth living" is exactly why I quit taking Tamoxifen and wouldn't even touch Ameridex. This is your life and you should be the one determining what your treatment will be. It's pretty evident that doctors still think of themselves as gods, they make pronouncements and expect us to follow them. I hope you will take the bull by the horns and determine what's right for you. You've gone through so much, both physically and emotionally so it's no wonder you're at your wits end. Good for you for making them test you for RA. We all know when something is not right and if we don't speak up...who will? Take a step back, take a huge deep breath and listen to that still, small voice within about what's right for you.

      almost 4 years ago
    • pattiep's Avatar
      pattiep

      Oh and yes the aprn said taxotere

      almost 4 years ago
    • moonmaiden's Avatar
      moonmaiden

      @Sharlie, even when I do think I know what I should try, getting help from the docs is another matter. At this point, I don't feel like the aromasin bothers me, but the ongoing side effects after chemo is another matter. They keep trying to sedate me when that is the last thing I need. I saw studies online of docs trying small doses of ritalin, and a bunch of patients raving about how much it helped them get back into their lives post chemo, but when I brought it up to my docs, they just all make me feel like I should be ashamed for even asking about it. And then keep trying to sedate me. I decided last night that I don't care how much xanax the shrink wants me to take, I have had enough of that stuff, the rebound makes my depression 10 times worse, I was rebounding when I wrote my original post, and just this side of suicidal. Xanax has a place in helping one to step away from trauma, but at this point in my life it isn't at all useful, and neither is zoloft, or sleeping all day and all night and not having a life. My self worth and self esteem has sunk so far out of dealing with the chemo brain, and I don't know who to turn to that has any experience treating it, they don't seem to think it's important enough to address, study, or treat. So I make do with caffeine, coffee, and sudafed, because I can't get the help that I want to try. didn't take the zoloft yesterday, and not going to take it today either, it might help, but right now I can't sacrifice my ability to work for it. I am way late on getting my taxes together, and can't do that if I don't get my marbles together.

      almost 4 years ago
    • moonmaiden's Avatar
      moonmaiden

      I fe/*el /**** <------ My cat is writing to you. Purring is a good analgesic :)
      I feel like speaking up doesn't work, I feel like I have to be screaming up.....sigh......

      almost 4 years ago
    • gonewest's Avatar
      gonewest

      My oncologist and pain management nurse practitioner offered me ritalin should I want to try it. (I have little energy.) It has everything to do with them wanting me to live life and yes, feel good. Right now I'm steaming over your shame. You have nothing to be ashamed of. Your doctors need to work for you not judge you. You've been through so much! Please be careful getting off zoloft. You're supposed to taper if you've been on it for awhile.

      almost 4 years ago
    • gonewest's Avatar
      gonewest

      I can't take xanax or antidepressants. I take a very small amount of clonazepam which has a long half life. No hangover the next day if I take it at night.

      almost 4 years ago
    • moonmaiden's Avatar
      moonmaiden

      Yeah, I know, I need to find the right person to consult with. My therapist referred me to a shrink to be evaluated for adhd, and of course he says I don't have that. I think they don't understand anything about chemo brain, and unless they have to deal with it in their own life they won't really know what to do. I was on a low dose of the zoloft, and they haven't upped it yet because I've been complaining about it making me sleep all the time along the xanax and all the other stuff I take, at least two other ones that are sedating. I think my meds need to be thinned down somewhere along the line, but I bring a whole bag of stuff to every visit, and none of them seem to be at all concerned of interactions or what have you. One thing I would like to say to everyone is that I truly appreciate you validating my feelings, it has been a source of low self esteem that I have been told through all this that it's all in my head and I should just suck it up.....sigh....

      almost 4 years ago
    • gonewest's Avatar
      gonewest

      They are wrong not to be listening carefully to your reports of side effects. They are wrong not to adjust or wean you off meds that contribute to a poorer quality of life. I grew up in Maryland, not far from you. NIH is doing a study about late effects of radiation. Maybe give them a call and get a referral if you can to a doctor who knows about late effects and how to treat them.

      almost 4 years ago
    • Sharlie's Avatar
      Sharlie

      Yes, purring is good for the soul and I don't think they have the slightest idea what to do about chemo brain...don't think they understand it at all nor do I think they are focusing many efforts there. I was 68 when I had my mastectomy last year and I've read that the older we get, the more anesthesia affects us. Truthfully, I have not felt as clear since then. And every medicine I've tried since then (the estrogen slayers and even ones I tried for high cholesterol and fibromyalgia) seems to make the brain fog worse. Cancer is a game changer and in many ways that I don't think they are aware of. Keep on keeping on and keep that cat nearby.

      almost 4 years ago
    • moonmaiden's Avatar
      moonmaiden

      Thanks to you all, I hope you all get deep and peaceful rest tonight, I'm going to seek same!

      almost 4 years ago
    • BoiseB's Avatar
      BoiseB

      Moon Maiden. Many times I wake up in the night and cannot sleep I use that time to pray. I will keep you in my prayers at night.

      almost 4 years ago
    • tuckercat2's Avatar
      tuckercat2

      It's is so good to talk with others who know this stuff is all for real and the struggle with cancer doesn't end with surgery as I did not have radiation and chemo. I thought that it would be back to normal once I healed. I had no idea about hormone therapy. What a rude awakening. I try to stay positive but I am tired. Like all of us I wish we had some idea where all this stuff will do to us in the long run.

      almost 4 years ago
    • tracyt's Avatar
      tracyt

      I've been where you are now. I felt that way for a while until several people told me to try pain management. I learned a lot by talking to other patients. A lot of us were diagnosed with fibromyalgia. Finally, I was getting answers. It took some time but i got off of my depression meds. I also saw a naturopathic doctor it helped as well. Im sorry you're going through this but please dont ever give up! You are a survivor!! It seemed like i was the only one going through, while everyone else bounced right back after cancer. Different bodies, different meds and different issues. My cancer is back and im in this battle again but im going to be cheering you on because you are a champion so please remember that!! God Bless you!

      almost 4 years ago
    • moonmaiden's Avatar
      moonmaiden

      Tracy, I hope you beat it this time, blessings to you.

      almost 4 years ago
    • moonmaiden's Avatar
      moonmaiden

      Tuckercat, yeah, it is nice to know I'm not the only one struggling so long after treatment, I hope it will get better for all of us. Blessings....

      almost 4 years ago
    • moonmaiden's Avatar
      moonmaiden

      Thanks Boise, I hope you got good rest last night! Blessings...

      almost 4 years ago
    • DeborahC's Avatar
      DeborahC

      Oh my! I have been suffering in silence for over a year now! Something told me to come back to What Next! Good grief, I thought all I am going through was old age! I'm an active dancer/teacher and my joints have not been the same since chemo 2 1/2 years ago. The pain wakes me up, AND I AM VERY ACTIVE and never stopped. I fought back from day one. When I could not dance or teach I took up yoga which saved my bloody life!!!! I don't do any drugs, I'd had enough. Chemo brain is embarrassing. . .I can't remember my choreography, have to write everything done and then can't read my own writing! I have no answers. . .I'm just so relieved to hear your stories, to know I am not alone and a misfit! My course, I just keep going. . .I'm not going to stop teaching, dancing, yoga, doing what I love around the house, hiking, camping, chopping wood etc until someone has to pick me up and carry me off! Thanks everyone and I hope you find the resolve to do the same. FIGHT LIKE A GIRL!!!

      almost 4 years ago
    • moonmaiden's Avatar
      moonmaiden

      Well, Deborah, I have been suffering from my docs persisting in treating a physical reaction to chemo as a mental health issue instead of a physical issue. Enjoy knowing that you are absolutely not the only one who is still trouble by it past a year, it's only the last 6months or so that I have started to feel more awake mentally, and also had tremors in my hands, a loss of coordination that is just starting to feel better just last year, and I have taken falls where I wouldn't normally because of coordination issues. So, yeah, it isn't just you, I hadn't been out here for quite a long time myself, but I'm happy to know that it isn't just me. Blessings to you and heal well!

      almost 4 years ago
    • tuckercat2's Avatar
      tuckercat2

      Wow, this is obviously a problem for quite a few of us! I am tired of hearing that it's not the cancer (you silly girl tone of voice) it's just you are getting older!! I know I am getting older, everyone is! I am so glad I found this question on the site. I am tired of explaining it's not RA, it is really from the medication and yes, I know I am taking quite a few anti things but it's because of the hormone therapy pill.

      I just get so tired of the comments. I am trying. I do get up and walk and go to work. I am worn out at the end of the day. I am NOT lazy for sleeping in.

      How are all of you dealing with those who do not understand and those who chose not to understand?

      almost 4 years ago
    • moonmaiden's Avatar
      moonmaiden

      Well tuckercat, obviously I'm having a lot of trouble dealing with others about it, which is of course why I wrote the post in the first place, cos I gotta vent sometime! That's part of the problem with what is essentially and invisible disability, if you break a leg and don't get around, everybody understands it's because you broke your leg, but if you're a few years out after cancer, got your hair back, and otherwise look more or less normal, or at least with clothing on, people don't understand that "cancer free" doesn't equate to "well". (that one issue alone cost me dearly during my divorce, but how am I to prove it's a side effect and not just laziness, especially with a now former onc fudging my records to make his stats look good? Invisible disabilities suck big time! And as you and many others know, it doesn't help that they want to treat it like a mental illness instead of a physical one. So we all wind up not getting our needs met in the end.....

      almost 4 years ago
    • tuckercat2's Avatar
      tuckercat2

      So very true. It's as you say, an invisible disability. Cancer changes lives forever and the sad part is for me, the operation and recovery was physically easy, where the emotional loss of my real breasts wasn't noticed because I had reconstructive surgery at the same time. Yes it was good to look normal, but they aren't real. I haven't any feeling and it sometimes feels like lumps stuck on my chest. And joy of joy! I have the phantom itch of a nipple that doesn't exist anymore or the burning pain just because. We all have things like that. I don't want pity, but understanding would be awesome. That's why this site has come to mean a lot to me.

      And then there is the part that wonders, will it come back? The middle of the night fear when I am the only one awake.

      almost 4 years ago
    • moonmaiden's Avatar
      moonmaiden

      Yeah, tuckercat, that is my worry as well, if it will come back / metastasize. I'm sorry you had to have a bilateral, I can sure understand what you're saying about knowing what's under your shirt and nobody else does, and they don't know what kind of pain you have from it.... I just wish the providers would have some understanding of what cancer patients go through, and offer some form of treatment for "after". But I don't think they really realize, they see these people every day, but I don't think they really get it that we have to go back to our lives, unless they have had to go through it themselves. And I understand that, I have had to be a caregiver along the way, and you have to learn to look at it from a detached point of view, but nobody studying or seeking to treat "after", that is too detached, we all need some help to have a life now. I tried googling for stuff like psychiatrists who normally work with cancer patients, and anyone else who might have some experience treating chemo brain, but I don't think I would be able to find someone closer than a couple hours away, and when I try googling I just get all these links for ACS and such, links describing chemo brain, and cancer, and stuff, and I'm very frustrated because the search engines just indiscriminately spit everything at you and get in the way of what you're looking for. Or I just haven't found the right search terms?

      almost 4 years ago
    • gonewest's Avatar
      gonewest

      Try pain management doctors/nurse practitioners with experience treating cancer. If it's not psychologically based why look for psychologist/psychiatrist, although with your doctors driving you nuts needing psych help be necessary too.

      almost 4 years ago
    • moonmaiden's Avatar
      moonmaiden

      @ gonewest All the docs wanted me to get help for the stress, I wasn't just trying to cope with cancer, but also a divorce and the loss of work. And for some reason they seem to all consider chemo after effects to be some kind of mental illness instead of a physical response to the treatments. I really don't understand why they wouldn't want to look for a cause, and why they wouldn't want to treat it.... Antidepressants and anxiety pills were fine then, I was too sick from chemo to do anything, so if they wanted me to take sedatives, that was fine at the time as I wasn't likely to want to get up anyway. But now I'm struggling, I need to get up, and the sedatives are causing me a lot of problems, I don't want to spend the rest of my life sleeping. Speaking of which, my pills are kicking in (not the sedatives, they are for other stuff but also make me loopy so I wait until a couple hours before bed to take them. Anyway, they are kicking in, and I'm ready to go sleep again, so I will wish you and everyone else a good and restful sleep tonight!

      almost 4 years ago
    • Razmataz's Avatar
      Razmataz

      Tuckercat. And moonmaiden. I get soooo tired of people telling me that im falling alot or tired or cant do things that i use to because im old or not trying hard enough. Yes my pain finally decreased and with that came more energy. However last week i had been going strong with lots of stressors for a couple weeks. I got scared as i felt that fogginess and forgetfulness returning. I know people say if your tired exercise but i actually found that their was a reason i was tired. Chemo and pain exhausted me. It wasnt til i gave in to it all and rested when needed. Got temporary disability that i started getting better. Be gentle. I understand having to work as i am a single mom. Getting disability is a gift. Youve worked hard in the past. If your able to do disability i definitely would. Hopefully its only temporary. Please if at all possible be gentle with yourself. Our bodies have gone through XXX and so have we. Take care of yourself.

      almost 4 years ago
    • barbdee's Avatar
      barbdee

      I hear you. None of us are the same after getting on the cancer train. Our oncologists & surgeons are trying to save our lives! Get the tumor out, heal up from surgery, take cocktails full of poison to Kill Cancer Cells! We either kill those cells or die. Doctors know the treatment is hard & yes we all hear in a daze, there are side effects. There is pain, worry, anxiety &plain fear. Zoloft does not make you sleep all day. I have taken it daily for 20 years. A half of Xanex causes me to fall asleep in my chair! I am back to work full time, got my Medicare card, try to eat better but am no purist! I make lots of notes & my family just laughs about grandma's chemo fog. Studies have shown 75% of us suffer from this. I'm just going to say this....it sounds like you are over medicated. Go back to your doctor or center & ask for help in decreasing your meds. Nothing works by taking one day & not the other. Especially anti depressant s! There is no shame if you are disabled. At some point many of us will be. If you can do a few hobbies you can quit isolating yourself with over medicating. I chose to live, even with the pain. Wishing you some peace. Know that we are all here to hear you! 24/7 Hugs

      almost 4 years ago
    • Roadrunner's Avatar
      Roadrunner

      I really feel for you. I also have the pain/fatigue that will not go away even with 30 minutes a day on a treadmill. I refuse to take more drugs that would make me not feel like myself.

      I had a TERRIBLE time finding my new life. I took a class at the hospital called "A Time To Heal" and it helped me. Another class is "Brain Fog". My onc did not recognize brain fog until I took the class flyers in and told him it helps.....doesn't cure.....just helps

      Good luck to everyone as we continue down this winding journey.

      almost 4 years ago
    • DeborahC's Avatar
      DeborahC

      Good Morning All, oh and by the way, YOU LOOK GREAT! That's what I get all the time. I've just gotten tired of going on and on about how I FEEL; how my joints ache, I'm all dried up, my chest pulls, and tightens and swells under my arm when I do anything strenuous, and that I'm terrified as XXX to one day hear cancer returned and on and on, but you know, I just say thank you now and move on. Oh and sometimes people say, "gee it's great to see you, you look great" and I respond thank you, it's good to be seen! Out of respect to all those who lost their battle. Peace.

      Keeping active helps me cope. I just found a group in town that supports women with Breast Cancer and other life situations. I have an appointment tomorrow with them to see how I can help breast cancer patients, survivors, caregivers through yoga and movement. I gotta do something. Unless of course I forget the appointment, brain fog. . . .no, it's ok, I WROTE IN DOWN IN MY CALENDAR!!!!

      We are the only ones who can bring peace into our lives. DC

      almost 4 years ago
    • moonmaiden's Avatar
      moonmaiden

      I write stuff in my calendar all the time, then I forget to look at my calendar!
      Hugs to Deborah....

      almost 4 years ago
    • Razmataz's Avatar
      Razmataz

      or lose the calendar...lol

      almost 4 years ago
    • Roadrunner's Avatar
      Roadrunner

      In response to DeborahC's answer I have to share something funny that just happened to me a few weeks ago. I went in for PT and the therapist asked me how I was doing.........without thinking I gave her my "standard" answer, "I am feeling great"........she just looked at me and said then what are you doing here? I laughed and said I am so used to saying that line it just came out of me :)

      almost 4 years ago
    • tuckercat2's Avatar
      tuckercat2

      LOL! I just say I'm great also. How sad is it that although we need support at the beginning and especially those who have to deal with radiation and chemo (bless you all!) once they can't see it they start telling you it's not the treatment! You are just (fill in blank) that's all. My niece understands that it is still ongoing. That she thought that helped my daughter and husband understand. My boss also understands. I am one lucky girl! The rest of my family, well, they are part of the "It's not the cancer treatment" crowd.

      Moonmaiden, I will check with my niece (Taking test soon to be a Nurse PA) and see if she has links. I wish you were close, my OC gave me ridlin. It did help. My pcp actually did one better. (this has happened very recently) he helped me sleep. It is so awesome! Eight whole hours of sleep in one night! WOW! He upped the dose on Quetiapine Fumarte and no I am not nor was I ever bipolar. The side effects of this medicine is calming the mind and sleep. I take a total of four pills, exestramine. Amitrex, Venaflaxine and the above. My hormone pill I take in the morning since it was keeping me awake.

      I live near Houston, TX so if any one wants the name of my oncologist or PCP I will happily give that information out. My niece knew the oncologist and the PCP. She took care of me during the whole operation and follow-up. I need to focus on the fact that I do have people who understand and forget the rest of the family. My family were so very close but once Cancer became part of the family all but the ones I mentioned decided to leave. My sister was my best friend and we have not had but one serious conversation about this and she told me about this women she knows that "just goes on with life" and "you would never know she has anything wrong." End of conversation.

      Hugs to all of us as we continue this journey. Moonmaiden I am so glad you brought this up!

      almost 4 years ago
    • moonmaiden's Avatar
      moonmaiden

      I also do the standard response, not I feel great, but something to the effect of fine. I"m not having trouble sleeping these days, it's part of my issue that I'm sleeping too much.
      It bothers me that the "blank" in my case = "mentally ill". I mean I know I've been through a lot the last few years, but I've also been through cancer and lyme disease, and some medication allergies, but no one wants to look for any physical causes where it might help me if they did, the lyme disease was a complete surprise, and I found out about it by asking to be tested for RA, and I started ruling out medications on my own when an allergy caused my throat to spasm into a painful cough. I had to complain to my primary several times about it before getting help with it. Wish I had House for a doc :) You're welcome Tuckercat, I'm glad that people are getting something out of this conversation. Hugs to all!

      almost 4 years ago
    • lamb0301's Avatar
      lamb0301

      I started having severe headaches from Letrozole that I even had an MRI done just to check to see if it had metastasized - it did not. However, I did learn from an integrative medicine nurse that I was probably deficient from magnesium....that did the trick 500 mg a day. I also checked with a health/wellness pharmacist and he said that the drug was depleting my magnesium, calcium and Vit D. I am now adding Vit B as well...but to avoid minerals containing zinc, copper, and would you believe Vit C. I decided to go off Letrozole for a week (I also experienced joint and muscle pain/fatigue) and want to build up my mineral count...then go back on Letrozole - more because of the fear factor ...low risk 17% Onco dx. There is some hope going forward. There is a new method called T-Cell therapy out of Stanford with much success - Europe currently uses some of this technology...cured my 3rd cousin who had breast cancer in her 30s'.....got cancer again in her ribs/liver in her 40's Stage IV....did treatment in Belgium...cancer free now. I'm also a radiation therapist so I see that although these remedies help people....it's still all about the money. If T cell therapy became the cure, there would be a loss of revenue for oncologists, hospitals and pharmaceutical companies. One just has to weigh the balance for oneself.

      almost 4 years ago
    • moonmaiden's Avatar
      moonmaiden

      For me, the balance is that if I have to go through chemo again, I might just tell them to just manage my pain, and leave it at that, if I am so bad off after the first round, what will happen after another round? I'm so sick of the idea that they don't want to cure it, they just want to treat it, and so sick of the idea that after they have "treated" it, they don't want to admit to any long term effects from the so called treatment, and therefore *won't* treat me for the after effects, because if they did, that would mean they acknowledge these things happen. They would rather tell me I'm mentally ill and leave me scarred for life. What kind of medicine is that? That isn't healing.

      almost 4 years ago
    • tuckercat2's Avatar
      tuckercat2

      You are right. Today has been a very rough day. I am down and this work day was just very rough, computers not working, plotters not plotting, and it makes everyone tense and irritable when they can not get stuff done because of mechanical failure.

      Just a hard day, I am tired of this pain I get under the "breast" . I have read up on it and it is a common occurrence for there to be pain without any real reason. The nerves are still XXX off and send pain signals just cos. Wow. What a fun time we are having!!

      almost 4 years ago
    • moonmaiden's Avatar
      moonmaiden

      @ tuckercat2, yeah, I'm having problems with pain on the right breast and under my arm, it's worriesome.

      almost 4 years ago
    • moonmaiden's Avatar
      moonmaiden

      Sorry you had a bad day today.... (((((tuckercat2))))

      almost 4 years ago
    • tuckercat2's Avatar
      tuckercat2

      Thanks. My work day is over. Yeah!!!!

      almost 4 years ago
    • lamb0301's Avatar
      lamb0301

      Please read this from a neuro - scientist Dr. Jeffrey D. Blaustein "Does hormone therapy for breast for breast cancer affect the brain". http://blogs.cancer.org/expertvoices/2015/10/27/does-hormone-therapy-for-breast-cancer-affect-the-brain/

      Going to send a note to my oncologist to find out what my risks are for relative/absolute....tired of these drugs they push on you.

      almost 4 years ago
    • moonmaiden's Avatar
      moonmaiden

      @lamb, thanks for posting that. I know it's impacting me a great deal. They also told me that if I don't take it, the risk would double. I don't know what the absolute risk is. but I also know that the majority of women stuck with that option don't make it to the five year mark because of the side effects, and the lack of support to treat the effects. I don't know what I'm going to do, it's destroying my ability to have a life. I don't understand how they can do this stuff to women without taking into account that they are not symptoms, they are lives waiting to be lived. It all leaves me feeling like instead of being a person with a life that needs to be treated, I'm just a cash cow to be taken advantage of. It's starting to lean me toward thinking about getting off of the blockers, but what's scarier than the lack of a life these days, is to thought of the cancer coming back.

      almost 4 years ago
    • tuckercat2's Avatar
      tuckercat2

      Wow, I have some research and thinking to do! Alzheimer's is one of my greatest fears and both parents have been diagnosed with this disease. My father died from the complications that come with the latter stages. Mom is 82 and has the first stage happening now. So breast cancer or Alzheimer's . What a choice. Both are just possibilities, but you know the fear of recurrence. My mom's mother and sisters died from one form or another of cancer.

      Hugs to all! And I would like to hear you thoughts on this information.

      almost 4 years ago
    • moonmaiden's Avatar
      moonmaiden

      Yeah, I don't know what to think of all that tuckercat, I don't have any dementia on either side of the family that I'm aware of, and have for the most part been fairly confident I wouldn't inherit Alzheimer's, but considering how hard it is to keep my mind straight these days, long term effects of hormone blockers are frightening me. I have a lot of thinking to do as well, and plan to start with mailing this thread to my onc.

      almost 4 years ago
    • Lorla's Avatar
      Lorla

      Yes, chemo brain is a legitimate problem that no one seems to know how to prevent or cure. I'm on my 6th chemo series in 6 yrs for recurrent incurable cancer, and the chemo brain is getting worse. I make lists and write "to do's" in my calendar--works as long as I remember to look at it (as you mentioned, too). It's embarrassing when I can't remember someone's name or other common words. Every time I have a chemo series, I say never again (not because of chemo brain but other physical issues), but always do it again. Not afraid of dying but am a real coward about pain & suffering. Hadn't heard about Ritalin or other drugs for chemo brain. Will ask my onc. Thanks to all who mentioned it. I hope you find a solution to your fatigue & depression soon. It's awful to be cancer free & still have no reasonably normal life.

      almost 4 years ago
    • moonmaiden's Avatar
      moonmaiden

      ((((((Lorla))))))) I don't know how you manage it, I think the only way that I would be able to get through again is because I'm still in shock that I went through all that in the first place and it just seems so surreal to me altogether that I still can't really wrap my head around it that I've been there. I'm so sorry to hear you're "incurable" or do they say "chronic" these days? I hope that you can find something to help you here, even if something small, and hope that you can bear it for as long as you want to. I think that probably for all of us here, as we go through it or contemplate that it could rear it's ugly head again some day, I guess the bottom line is we bear it until we're tired of it....

      almost 4 years ago
    • tuckercat2's Avatar
      tuckercat2

      I agree. It is so hard some days to get up and go to work. Today my right breast area hurts. Which is very strange since I can not feel any touch or pressure to that area. I am right handed so maybe it is the muscles under the reconstructed breast? I am able to work but I do not have the energy to do anything when I get home. I write my to do list on my IPad and so far that has helped. Doesn't help when I can't remember a name or what something is. My boss is awesome and wants me to stay working. I find that the words I can't remember at the moment is always a noun. I remember all the descriptive words but can not tell you what I am describing.

      Lorta, I don't know how you handle all the stuff in your life. My thoughts and prayer are with you.

      almost 4 years ago
    • moonmaiden's Avatar
      moonmaiden

      Amen to that tuckercat! *sigh* That's part of the problem for me as well, it's not that I can't do anything, but I do just a little and then lay down to sleep a couple hours. I spend most of the time resting up to get through the couple days of income seeking that I do. Even though I try to do the karaoke thing for an hour or two a week, and the lapidary thing for a few hours, I'm not getting up to get in a full day at whatever except at work. My memory is improving the last few months, but the fatigue just keeps on.....

      almost 4 years ago
    • BelindaH's Avatar
      BelindaH

      Hi Moonmaiden, My heart goes out to you. There is so much residual stuff both physical and emotional to deal with. You are not alone in what you're experiencing and more attention needs to be given to our recovery emotionally once the physical treatment is over. I'm a P.S.H. therapist who has also been through breast cancer. My life is actually better after cancer. I'm living with a joy I never knew previously. But I did some work to heal the emotional stuff. You can find me here embracingchemo.com.au. Not sure where you're based but there are a number of P.S.H. therapists in Australia who can help you. Contact me if you want more info. Bye for now, Belinda

      almost 4 years ago
    • Lorla's Avatar
      Lorla

      Thanks Moonmaiden and Tuckercat2. I'm lucky that I'm retired at least. Don't think I could handle going to work anymore, with the stress it can cause & the fatigue. You are amazing that you can do that. Also that you can make yourself do the hobbies and exercise. I make jewelry (not to sell) and have various other hobbies, but when I get in a "funk", I don't feel like doing anything. Sometimes I take Tramadol (Ultram) for pain. It makes my brain feel good, too (i.e., I get in a better mood). But I don't want to get too used to it. Like moonmaiden, on days where fatigue hits hard, sometimes I just do a little and then lie down for a while (15 min. usually turns into 2 hrs though). Lots of wasted time. Glad to hear your memory is improving anyway. Maybe it's the beginning of a fuller recovery for you.

      almost 4 years ago
    • moonmaiden's Avatar
      moonmaiden

      Thanks Belinda, I appreciate your point of view, and thanks for the link, I will check it out. I'm sure I no doubt have plenty of residual emotional stuff to deal with, I'm not in Australia though, I'm in Maryland, USA. While I do have plenty to get past emotionally, at this time I feel that a lot of my issues at the moment are related to over coming cancer treatment and lyme disease, and the lack of physical energy and cognitive issues that I have right now, I truly don't feel I'm as depressed as I was going through cancer treatment and divorce at the same time, I feel that the issues that are holding me back at this time are not from depression, but from physical issues from cancer treatment, and trying to cope with how much the treatment has set me back physically has these days left me feeling unproductive and frustrated, partly due to not having the physical energy to take care of my home and life as I want to, and partly, well... I'm divorced now. I would like to have a boyfriend! But I haven't pursued it, because I don't feel comfortable having anyone over much with my home in the state it's in, because I am still pulling my marbles back together yet, and because I'm not stable in the way of income, and want to have those things squared away before I cultivate a new relationship. The physical hang ups are frustrating to me, if anything is causing me to feel depressed these days, it is because of wanting to be able to offer a well rounded woman to some lucky guy who can appreciate me better than my ex did. It's also frustrating to me that I'm still trying to pull my marbles back together, right now I'm waiting on a fine to show up in my mail box, as I spaced out at a traffic light and wound up going through a red light, that's not just frustrating, it's down right scary, not being willing to drive as much is also holding me back from finding someone nice to be with as well. If I had known how profoundly I would be affected, I might have made another choice, according to my current onc, it's actually a question whether I even needed chemo in the first place, or if I really needed herceptin, which has damaged my lungs and heart. If I have emotional stuff to deal with these days, it's that my former onc was questionable at best, but really good at promoting himself, and I'm mad as XXX at him, and at the surgeon who sent me there, as I feel she totally tuned out what I was telling her about going through a divorce and such, my current onc is at a facility where I would have gotten way more help and support than what I got at my former onc, and I'm really XXX off at the surgeon who surely would have known what was available at the different facilities that she could have chosen a way better option if she were at all really listening to what I was saying to her about my life and needs as her patient. I trusted her to send me to the best place I could go, and I am very disappointed that my trust was misplaced. One thing that I would say to any newly diagnosed person who may read this thread in the future, is to go around to as many different facilities as you may be up to visiting, get 2nd, 3rd, and 4th opinions if need be, the place you've been referred to may no be the right place for you, it may be the place your surgeon referred you to because of what insurance you have, or just because it was "their turn".

      almost 4 years ago
    • moonmaiden's Avatar
      moonmaiden

      Thanks Lorla, well, it's a start any way, glad for you that you are able to enjoy retirement and don't have to worry so much about needing to work and please others, I'm sure that must be a great help, I hope you have supportive family around you as you recover, I'm sure that must help a lot. With my husband gone, I don't have any kids around to help, it's just me here. When I started in to treatment, I was looking to my parents for help, but then my mom entered her own cancer battle, nearly lost her foot, and they could no longer advocate for me while my head was messed up, at least dad was able to run me to my treatments, but I no longer had anyone with any brain cells left to sit with me and the doc in the treatment room. My parents have been married for 57 years, and dad has been a real champ to help mom through all that. I hope you have someone as supportive in your home :)

      almost 4 years ago
    • moonmaiden's Avatar
      moonmaiden

      Lorla, if you are having chronic severe pain and the tramadol helps you to feel better, it might be a good thing for you to take it, I just looked it up and it apparently works better taken on a schedule. I wouldn't mind *anything* that would help me feel better these days. I had an issue where I had taken a spill, and it messed up my hip to a point where it was causing sciatic pain and numbness on one side. I just kind of tolerated it until the pain and numbness got too bad and worrisome, and my pcp gave me a script for a muscle relaxer. Best week I've had since cancer! Still didn't have my marbles, but generally didn't give a whoop, and had a good time talking to people at work! :)

      almost 4 years ago
    • moonmaiden's Avatar
      moonmaiden

      Pcp took xrays first to find out if there was anything wrong with my bones, and figured it was muscular, apparently there is some kind of little muscle in the hip that can cause sciatic issues. Still have pain in that hip, but not enough to motivate me to talk to pcp about more muscle relaxers, it's tolerable, I guess....

      almost 4 years ago
    • moonmaiden's Avatar
      moonmaiden

      Belinda, your site is interesting, and I look forward to exploring it. I didn't have anticipatory anything, I had no idea what to expect apart from hair falling out. I wasn't at all prepared for things like my gi tract from beginning to end suffering chemical burns. I didn't have nausea, but couldn't bring myself to eat because everything tasted so horrible. I "only" dropped 15 pounds during treatment because I downed 4 ensure drinks every day to help me keep up my strength, as I couldn't eat anything for three weeks out of every month, and that last week out of the month was iffy whether I could actually enjoy eating anything. I wasn't at all prepared for what happened to my fingernails, or for bleeding everywhere out of every place I could possibly bleed from, nobody told me about any of that stuff, I wasn't anticipating it, and it was frightening when I started to notice these changes and started looking up stuff because nobody told me what it does to fingernails, teeth, eyes, that's the stuff I never heard about before, all I'd ever heard about was the hair falling out, and the nausea, which is the one thing I didn't have....:(

      almost 4 years ago
    • moonmaiden's Avatar
      moonmaiden

      Now I'm really low. One of my friends who was in treatment for breast cancer died a few days ago. I called up a mutual friend who I knew would be grieving so as to comfort her. She described to me our friend's last days. She had been taking some form of chemo, but I'm not sure what. My other friend told me she was on Arimidex. I will grant that she was 86, she lived a good life up until the last couple years. I think she might have had Herceptin infusions, I don't know that for sure, just a feeling. A few years ago, the cancer metastasized, and was even in her hair, in her spine, everywhere. I don't know what all they gave her that did this to her, but for a couple of years she complained of pain on one side, yet they couldn't figure out what was wrong with her. A couple weeks ago they admitted her to the hospital, and did an exploratory surgery. Her gall bladder had completely dissolved. Disintergrated. Some gallstones in the cavity where an organ had been. She also had liver failure, and hardly had a liver left.. And heart failure. What the heck kind of healing dissolves your gall bladder and liver? And what the heck kind of doctors let a patient be in that much pain for two years and don't want to find out what is causing it? It is really killing me thinking about all the stuff they did to me, and wondering what it will do in the long run, as it is I'm half the person I was before treatment, and deteriorating because I can't get any help. She apparently kept taking the Arimidex because her husband would be lost without her, and she wanted to live long enough to see him off the planet before joining him. I don't know what to do anymore, and I'm so angry about what they call treatment. What kind of treatment leaves you cancer free, but without a life? What kind of sadist comes up with a notion that maybe if they pump poison through her, maybe that will work?

      almost 4 years ago
    • tuckercat2's Avatar
      tuckercat2

      Hugs!!! It's so hard to know what to do. I am tired and don't know if it's normal or if it's more from the pill. I try to stay positive but it's hard.

      Hang in there moonmaiden and I will do the same.

      almost 4 years ago
    • moonmaiden's Avatar
      moonmaiden

      I'm trying. But I have to find a way to get some help from these doctors!

      almost 4 years ago
    • tuckercat2's Avatar
      tuckercat2

      I will pray that you do. This is hard enough with support, I can't imagine how hard it is without.

      almost 4 years ago
    • PaulineJ's Avatar
      PaulineJ

      I can't read all the comments.But I'm in my 4th and 2nd year of remission and no change physically.Went through the whole works twice,plus,but I will not see a phychiatrist,phycologist or social worker that don't do a thing but make apps for you with them.I've been there done that.I don't know about you but it made me more depressed on my circumstances and also physical problems daily that trigers it's,not just depression for no reason at all.The only answer for me is Jesus for He's been there with me and blesses me in many ways.I don't need wordly therapist.My faith,hope and trust is in Him only as we go further on in these last days.This is not my home.I'm only on a journey to glorify and serve my Lord no matter what comes upon me.There's no suffering that I can't deal with when He did it all for me by diying on the cross for my sins.I am sved by grace for He loved me first. 1 Corinthians 15:1-4

      almost 4 years ago
    • tuckercat2's Avatar
      tuckercat2

      moonmaiden! How is your day? Just checking in to say Hey, I am thinking of you!

      almost 4 years ago
    • Lorla's Avatar
      Lorla

      Thanks for the responses, MoonMaiden. Sorry it took me so long to read them. I do not have supportive family around. Like you, I lost my husband. My only child lives over 1000 miles away, and my parents are long dead. So it's just me, too. Friends are good but not always available and don't really understand what we go through. I hope you are feeling better.

      almost 4 years ago
    • moonmaiden's Avatar
      moonmaiden

      (((((Lorla))))) Yeah, I'm feeling a bit better today, thanks!

      almost 4 years ago
    • moonmaiden's Avatar
      moonmaiden

      Ah, thanks Tuckercat, I'm doing better today, hope you are having a good one! :)

      almost 4 years ago
    • moonmaiden's Avatar
      moonmaiden

      Hey Pauline, good for you, I'm about done with the shrinks, I canceled my apt this week, I got worse since I started seeing a psychiatrist. I need to explore some of the links posted here and see if I can find someone who actually knows something about chemo brain and chemo fatigue, because where my doctors have been sending me so far is not doing me any good at all and making some things worse. My main groove is reaching out to people...

      almost 4 years ago
    • PaulineJ's Avatar
      PaulineJ

      Amen and Amen my sister.
      I gave up telling my doctors anything about how I feel when they ask. lol! I've talked 'til I was blue in the face (per say) since 1998.

      almost 4 years ago
    • moonmaiden's Avatar
      moonmaiden

      One of my problems is that it's too ingrained in me to automatically say "fine" when people ask how I'm doing, and to try and "be brave" because when I start telling them how I'm really doing I feel like a whiney XXX. I have to be more forward with talking about how I'm really doing, but it's hard to do so in a clinical setting knowing that they don't really have time to deal with me having an hour long breakdown in the exam room....sigh....

      almost 4 years ago
    • tuckercat2's Avatar
      tuckercat2

      Good morning!

      I also tell most that I am fine. They don't understand the joint pain, the burning in my chest under breast that I can no longer feel. They don't get that sometimes it is a bad day just because. And because they can't or won't understand the bad days, they don't understand how good a good day can be. You know the day you wake up and the pain isn't the first thing i am aware of.

      I have more questions about the long term effects of hormone therapy. Unfortunately I don't have anyone that has answers!

      I don't do psychiatrists, my husband went to one and the all XXX broke lose. Things went south fast. Talking about what is wrong is fine but somewhere along the way there should be suggestions on how to cope not just going over the problems over and over and over.

      almost 4 years ago
    • moonmaiden's Avatar
      moonmaiden

      Amen tuckercat, totally agree with you on that!

      almost 4 years ago
    • Sharlie's Avatar
      Sharlie

      Moonmaiden, I'm so sorry about your friend's passing. I can tell that was a huge blow to you. It's important to take the time to grieve and express your anger. I haven't been keeping up with all of the posts in this wonderful (but heartbreaking) thread but read through them all this morning. I say heartbreaking partly because it's terrible what the medical profession puts us through in the name of "healing." Yes, some of the drugs might bring some women (and men) a few more years, but at what cost? Many report no side effects, and that's wonderful for them. We are all as individual as snowflakes, so what works for one, might destroy another. I did not have chemo (didn't need it) but after three months of taking Tamoxifen, I suffered from a lot of brain fog and it took a long time for it to clear up. Not even sure it's totally cleared as it might have done a little permanent damage to my brain. So I can't even begin to imagine what it would be like to have chemo brain! My heart really goes out to you with all you've been through. Even if you don't have some of the other side effects from the drug you're currently on, I do wonder about the unknown side effects. I read with great interest the article that lamb0301 posted and I hope you did too. After doing an awful lot of my own research (something I still do frequently), I decided against taking any of the hormone blockers. For me, the risks (known and unknown) were not worth the extra months or perhaps a year or so of longevity. My daughter and I discussed it and decided that my quality of life was far more important. I'm 13 months out from my bilateral mastectomy (with no reconstruction) and I'm in a better place mentally, emotionally and physically. I'll be 69 tomorrow and have lived a good life and look forward to more of the same. If the cancer comes back, I'll deal with it head on once again, but this time with much more knowledge. I will try to keep doing the natural things I'm doing for as long as possible and for as long as I can afford it on Social Security. Never say never, but knowing what I know now, I don't think I'll ever opt for chemo or radiation or any of their medications. I would just use palliative care with pain management. We each make our own decisions based on what we know and what we believe, but if I was 86 like your friend, I don't think I would put myself through such harsh treatments. I try to share what I've learned but I never judge anyone else's decisions. I left my home and family in MI when I was 18 to move to Washington D.C. to work and live there. People told me I was making a mistake but I felt that even if I was, it was my mistake to make. I left to get away from an abusive and dysfunctional family and to make a better life for myself...which I did. But I've always believed that everyone is entitled to make their own decisions based on what they believe is right for them. So in closing, I would recommend that you do your own research and look to yourself for the answers, not the doctors. They can give you some advice but it isn't always right or in your best interest. If you ever get a chance to watch "The Truth About Cancer" by Ty Bollinger, I highly recommend that. It comes online every few months and is free watch. I think it is eight or nine episodes and I finally saw the entire thing a couple of weeks ago. I also am currently watching another free online series "Food Revolution Summit." It's amazing what many doctors share about the lack of training they received related to natural healing alternatives. Sending you hugs and lots of positive energy.

      almost 4 years ago
    • Elephant's Avatar
      Elephant

      Not an answer, more a desire. The anti-Estrogen drugs wreck havoc on me.
      I wish someone could make a synthetic Estrogen which does not effect Breast Cancer.
      It will not happen in my life time. Dream on, for those who are much younger, perhaps one day.

      almost 4 years ago
    • Littlebit's Avatar
      Littlebit

      I started having side effects from the chemo I'm receiving for stage IV pancreatic cancer. I contacted my oncologist and found out that while he is great at choosing what chemo drugs to prescribe he is pitiful with dealing with side effects. I did a little research and found that there is a Supportive Care and Survivorship section at the hospital I go to for chemo (also known as palliative care). I contacted them and made an appointment and I am so happy with the results. Any problems I have with side effects or otherwise, I need only send an email now to the nurse practitioner that is assigned to me and they handle it competently and fast. It is NOT hospice care but palliative care. I continue to receive chemo while signed on with this center at the hospital. They handle all of my medication refills for me and I do not even have to contact them for refills. It is automatic.

      almost 4 years ago
    • punalei's Avatar
      punalei

      I completely agree with you. When I finished the so-called treatment, I was like Alice in Wonderland: lost down the rabbit hole. They sent me to "behavioral therapy" and the therapist had no idea what I was going thru. I have borderline lymphydemia. My whole body aches from the AI's and I have had an embarrassing hacking cough since chemo. The doctors just don't get it. Treating cancer is, to them, no different from treating a broken leg. I have been tinkering on my own with a cocktail of OTC pain meds, which sometimes work.

      almost 4 years ago
    • HighTops5380's Avatar
      HighTops5380

      punalei, that cough could be an allergic reaction to your chemo and at the very least could signal a lung problem that needs attention. I developed a persistent cough during chemo that got worse as I progressed through radiation and my onc finally sent me to a pulmonologist for tests and treatment. It took three weeks of high dose prednisone (plus a long taper to get off it) to clear up the pneumonitis (and the awful, exhausting cough that went with it). No one knows for sure, but the best guess of the onc and the pulmonologist is that the lung problem was an allergic reaction to Herceptin. The onc decided against the year of Herceptin he'd planned because it could trigger the lung thing again and leave me permanently on oxygen ... or dead. I worry a lot about the cancer recurring if I don't get the year of Herceptin, but quality of life is important.

      almost 4 years ago
    • tuckercat2's Avatar
      tuckercat2

      I am also worried about the side effects the hormone blocker has on my brain. My dad died from Alzheimer's and they tell me my Mom now has the same disease. This foggy brain scares the crap out of me. When I can't think of a word I worry I have that awful disease too.

      My onc tells me if I remember I forgot a word and what that word is, I don't have Alzheimer's. I will not get tested for it since I don't think I could cope with the knowledge that I will forget all the ones I love and cause them immense pain. Now to take the step to stop the hormone treatment. I am tired of being afraid but having quite gotten to the point I can accept the things that might be.

      This thread and the people on it are a mind saver! I don't talk about this issue with anyone. They don't understand what it is like to have your body try to kill you. I try to stay calm and not make a big deal of the things I think and worry about.

      Moonmaiden, how are you?

      almost 4 years ago
    • DeborahC's Avatar
      DeborahC

      OK Gang! WHAT NEXT????!!!!! More side effects I had no idea about. Just a heads up.

      Been having diarrhea for 5 months now accompanied by excessive flatulence. Ok, I'm thinking the holidays, travel, different water, different food, blah, blah. Now it's to the point that I am soiling myself! Dehydrated. I tried to rationalize what I'm eating, what it different? Well I thought I was eating better since I quit my job a year ago. Cooking more at home, no more processed, packaged food on the go. I've been cooking from scratch, good home cooked meals, making our bread, no red meats. . . . .

      So I went on line to look up lactose intolerance, symptoms, causes etc. Guess what? Two reasons for this to occur:
      1. Born with it - a gene from our parents. Nope never had it and I'm 60.
      2. "Lactase deficiency is the result of injury or illness affecting the small intestine, or the body's ability to make lactase. Some common causes include chemotherapy, celiac disease, or Crohn's disease. So not only do you have cancer and have to be treated with a poison, but you might not even be able to enjoy a nice cup of warm milk to settle your nasseated stomach! The fates can be cruel!" Got this info from: Today I Found Out - What Causes Lactose Intolerance.

      It could be IBS too, but I immediately cut way back to almost no milk products of any kind. Bought almond milk for the first time in my life. . . . which I don't drink but cook with.

      So I'm guessing the chemo had an effect on my intestines as well and took about 6-8 months for my body to recognize the change in my diet; apparently is liked the processed junk better.

      This is only the first week of my change in diet and the diarrhea has reduced significantly, but not completely yet. Yes, I'll be seeing my oncologist next month and let them know ALL about this. I did my best to try and take care of this myself - empowerment. I certainly don't recommend anyone else waiting that long, but I'm stubborn and so tired of running to the dr.

      Just had to let you all know. Gee the things we talk about now with total strangers, but maybe someone out there is suffering in silence.

      HANG IN THERE! This will pass too! Deborah

      almost 4 years ago
    • tuckercat2's Avatar
      tuckercat2

      Deborah:

      I had to smile at the "this will pass too!" Considering the subject of your text. Not making fun.

      Hope you have it under control. I did not have to do chemo, and I would really miss milk and milk products! Coffee with out cream?!?!?! Not to be thought of!

      Have a blessed day y'all!

      almost 4 years ago
    • moonmaiden's Avatar
      moonmaiden

      Hi Tuckercat, I'm having a relatively good day today, thanks for asking! I hope you're doing well too! I chucked all the XXX sedatives and antidepressants, they may have been appropriate at one time, but they simply aren't now. I still have issues with fatigue, for now I'm just trying to get by with a combination of sudafed, vivarin, and aspirin until I can find some way to get through to the docs that I'm medicating my self because I'm desperate when I have been trying to get help they can monitor and make sure it's helping... eh.... spent two days down this week from exhaustion after working the weekend, if I keep on like this I will have a big problem financially, but, the good news is today is a good day :) I'm sure the prospect of Alzheimer's must scare the bejeebers out of you, but I agree with your doc, if you have enough marbles to know you forgot a word / remember the word later, it isn't Alzheimer's, or at least not at this time. At least as time goes on, I started having fewer brain XXX toward the end of last year, and feel a lot more lucid today than I had since dx, now if I can just get the fatigue issues dealt with before I disintegrate entirely, I'm so weak from lack of exercise when I used to get so much physical activity before dx, but the fatigue just really keeps me down too much.....

      almost 4 years ago
    • moonmaiden's Avatar
      moonmaiden

      Hi Deborah, are you still in chemo? When I was in chemo, it put me through all kinds of embarrassing side effects, the first one was that I had chemical burns all through my gi tract. Burning mucous, constipation one minute, diarrhea the next, incontinence, bleeding in places that aren't normal for me, loss of hair, deformed and painful fingernails, all kinds of stuff. The only side effect I didn't have was nausea, of all things, but I still starved because everything tasted so horrible I couldn't eat it. Hopefully some of these things will resolve for you over time, a lot of them did for me. One thing that I learned along the way is that stress can cause incontinence, and it does seem to bear out for me up to a point. The reason, as I understand it is that long term stress can leave one stuck in a permanent or semi permanent fight or flight mode, and when you can't fight your body is always prepared for flight. One of the things a body under stress does in preparation for flight, is it tries to get rid of any excess weight possible to flee in a lighter body, and one of the ways it does that is that thing when something awful happens, you say "Oh shiiiiiiit!!", and then you do it! So that may be something to contemplate also, it's embarrassing for sure, but be gentle on yourself about it, and give it some time. I hope you will post back on how your new diet is going. As for talking to strangers, you have met a group that is going through one of the very strangest of things, we may be strangers, but we've been there as chemo comrades. Hope you feel better soon! (LOL tuckercat!)

      almost 4 years ago
    • moonmaiden's Avatar
      moonmaiden

      PS to Deborah, I have always been lactose intolerant if I don't cook the milk or use fermented milk products like cheese and yogurt, can't drink it straight or it curdles in my stomach and makes me hurl. I love almond milk though, it's yummy on my breakfast cereal and has lots of badly needed calcium!

      almost 4 years ago
    • tuckercat2's Avatar
      tuckercat2

      For pain I use Aleeve. It helps me with the joint pain and I tolerate it better than the pain medication from the doctor. I just have a hard time with pain medication, I seem to be allergic to quite a few. I have a high tolerance for pain so that is in my favor.

      I am able to work, I did not have chemo or radiation just that awful hormone killer. I find I can not work as much as before even though I have a desk job. I do autocad for engineering. I size the lumber and try to bring the plans back into the realm of possibility. I have a great boss. He was the first to know that I had cancer since the doctor called me at work to tell my that gem. She is awesome in diagnosing but not so great on timing.

      My two sisters don't get it. They figure the operation is over and it's all said and done. My mom had breast cancer about 45 years ago with no recurrence. She also did not have any treatment of any kind after the operation. So they think it isn't so bad if caught early. My one sister responded to the possible hair loss if I had chemo/radiation with the comment "well maybe it will come back in curly." Not really in the mood for that. Oh well. I do have those that understand that for those of us who have Cancer in their life it doesn't just go away. But I hear comments like "you know cancer, it always comes back" said by well meaning people not understanding that they are talking about your life. Oh well.

      I have gained enough weight that I am almost 200 pounds. I have to lose and I need to walk and do weights. But I am doing all I can to go to work and home.

      ((HUGS)) Moonmaiden!

      almost 4 years ago
    • moonmaiden's Avatar
      moonmaiden

      Hugs to you tuckercat! That's awful that well meaning people would talk about it coming back when you are trying to keep your mind on hoping that if you take the stuff they want you to take that it won't. It really bothered me when a social worker told me one day that they don't even try for a cure, they treat it as a chronic disease. If it's chronic, and you have reason to expect it will come back, I don't even want to think about the possibility I could have to go through all that again. I have a theory about the weight gain, estrogen lives in fat cells, I believe that the reason for weight gain on hormone blockers is because the body is fighting to hold on to the hormones you have left after menopause, which could also explain weight gain after menopause. I've managed to come down from 160 to 150, but it is a real struggle for me. I'd like to bring it down more if possible, I'm only 5'2". At least as I start to get up and around more it's helping some, but work and a little housework and I don't have energy for much else, and only work part time as it is. Your sisters will get it if (God forbid) they have to find out the hard way. I'm very glad to have started this thread, it's nice to know that I'm not the only one, and it seems to be helping others to at least have somewhere they can talk about it.

      almost 4 years ago
    • moonmaiden's Avatar
      moonmaiden

      PS to tuckercat, the reason why I'm using aspirin specifically is only partly for pain relief, but also because of one of the links gonewest posted where they came up with some insights: Doctors have been looking into how to prevent and treat cancer related thought and memory problems. It is still too early to know how well these work but they include

      Erythropoietin (EPO) – this drug may help by raising haemoglobin levels
      Aspirin – which works as a mild blood thinning drug
      Methylphenidate – a type of stimulant for chronic fatigue syndrome, daytime drowsiness and attention deficit disorder

      The aim with EPO or aspirin treatment is to maintain or increase blood flow to the brain cells and so increase their oxygen supply. Understanding more about what causes chemo brain will help doctors to find ways of preventing and treating it.
      http://www.cancerresearchuk.org/about-cancer/cancers-in-general/cancer-questions/chemo-brain#treat

      What stands out to me is that they have not at all been treating their patients with antidepressants, but with stimulants and aspirin.

      almost 4 years ago
    • tuckercat2's Avatar
      tuckercat2

      I will try the aspirin. The Methylphenidate has been vetoed by a PCP since sleep is always difficult for me. I took ambien for 10 years to try and sleep. For the most part it worked, at least early on. But the side effects only got worse. Sleep eating and drugged out the next day. It only took me 10 years to decide to stop taking it. And of course being that I am impatient I just stopped taking it and the antidepressant I was on when I was diagnosed with cancer. What a fun time that was! My surgeons didn't ask about what I had stopped taking and I didn't think it was an issue. My oncologist was appalled that I just stopped. So she had me start again, but without the ambien since I would not take it again and she agreed. I ask her every other visit if I can stop taking any of this medicine and we go over the list. Now I have found a PCP that isn't in to medicating problems away and he is in charge of all but the hormone killer.

      It is good to talk to people who aren't telling you to suck it up, so and so had things much worse and she is doing this and that and you would never know she had anything wrong with them.

      Do you find it hard to tell new people in your life that you had cancer? I am embarrassed and I haven't any idea why. Weird question of the day.

      almost 4 years ago
    • Elephant's Avatar
      Elephant

      Deborah C, I read with great interest your difficulty with Lactose. As well as Breast Cancer with recurrance, I have had Crohn's since a teenager. It took me 20 yrs. to recognize I was Lactose intolerant. Now buy only Lactose free milk, and can find Lactose reduced cheese. Having had 2 bowel resections, I am Crohn's free, but have irritable bowel, and intestinal hurry. I have many tips re "accidents". Presently living on Natures Path high fiber cereal Plus vitamin supplements. Radiation certainly can do a number on organs other than the one being treated. Cancer Sucks. But if we are still on the right side of the grass, we must make the best of a bad diagnosis. Sending hugs, Elephant.

      almost 4 years ago
    • tuckercat2's Avatar
      tuckercat2

      Yep! Elephant waking up every morning is a good thing!

      almost 4 years ago
    • moonmaiden's Avatar
      moonmaiden

      Hm. I wouldn't tell someone new right off the bat I don't think. It's not something to be embarrassed about though, or I don't think so. I have three pink bands on my arm, and a 4th will be added in August. But I would probably want to size someone up before I did. It could be problematic at times. A prospective employer would want to know, even if it doesn't interfere with your work and it's not really any of their business. I would like to have a boyfriend, but I'm not sure how to go about working with that. I look at online dating sites, but I'm reluctant to approach anyone. If my docs are "not into medication" to a point where I can't get help when I need it, I have to think about that. I'm all for better nutrition, cooking your own food, getting exercise and fresh air, etc, but I also acknowledge that sometimes a body needs to be able to get up and do stuff before they can do all that. The only sleeping problem I have is that I sleep so much these days. Even though I'm not taking the psych drugs, I'm still pretty drugged up at night, my pills for neuropathy and hot flashes are anti seizure pills that put me right out. It's getting to a point where they are not helping me though, because I can't take them during the day, they make me too loopy to function, but I'm not taking enough apart from what I take at night and now my hands are bothering me, and hot flashes have become more frequent lately. I find myself embarrassed to try to talk to a doc about my low energy only to be told I'm depressed. I've been through chemo, and been diagnosed with lyme disease, why should they wonder about it if I feel tired all the time? But I haven't asked my current onc for any stimulants because the way my former onc and primary reacted to my request for help, I'm too embarrassed to ask now, and more often than not just say I'm fine, when I'm really not. I didn't ask my current onc about stimulants, because of the way the others reacted. I did ask him early on if there was anything he could do to help my energy, but the only thing he was willing to offer me was more steroids like what I had to take during chemo, and those just make me feel horrible and give me roid rage. Other than that, all he's offered is to tell me to eat better and exercise, but I need to be ready to get up and cook, and shop, and things like that. And now I'm crying because I feel so frustrated and helpless about it, and ineffective to get some help for it. I was writing a letter to my onc to try and talk about it, but now I'm just so self conscious about trying to bring it up again.

      almost 4 years ago
    • moonmaiden's Avatar
      moonmaiden

      If my car battery went out, I would have no problem at all getting a jump start.....

      almost 4 years ago
    • moonmaiden's Avatar
      moonmaiden

      And as someone said earlier, they don't have any problem throwing psych drugs at you, so why do they have a problem throwing something that might actually help?

      almost 4 years ago
    • tuckercat2's Avatar
      tuckercat2

      moonmaiden, I'm sorry, please don't cry! I feel frustrated and to tired to cook and all that and I have some support. You have done an awesome job just waking up and getting through the day! You are a survivor and with all that has happened that is just beyond what I could handle. You have every right to be tired and want them to really listen. This is NOT a reflection on you! The hot flashes are so awful and the pain in the hands? Wakes me up at night. I want to cry, but it would just give me a headache and do nothing else, and I am beyond crying.

      It is a very rough road you are on and I am impressed you are still trucking on, even if it is slow motion, you are still here.

      HUGS!!!!

      almost 4 years ago
    • Elephant's Avatar
      Elephant

      moonmaiden
      I just read you also have Lyme. This a whole lot to carry. No wonder you are beat. Do not feel embarrassed re talking to your Oncologist. I too am composing a letter to mine, I see him June 1st. I am learning he is more interested in physical maladies, ie muscle and joint pain. The expression "walk a mile in my shoes", try "spend a week in my head." I do not think he will get it, but I will try. I am so fortunate to have received my diagnoses at a senior age. I feel for all the ladies and the few men who are struck at a much younger age. Having Crohn's from a young age, gives me a better appreciation for the young Breast Cancer patients. It too, when active, saps your energy like crazy. Steroids also sent me too a place I do not want to visit again. Take care moonmaiden, sending healing hugs your way. Elephant

      almost 4 years ago
    • moonmaiden's Avatar
      moonmaiden

      Smiling at tuckercat.... (((((((hugs to tuckercat and elephant)))))

      almost 4 years ago
    • Robbi's Avatar
      Robbi

      Moonmaiden I don't get on this enough so please can you email me, your the first person whom has the same as me Omg sometimes I wish the cancer killed me if someone tells me to go for a walk it will make me feel better I might hit them. Before cancer I was healthy due to radiation chemo Herceptin and double mastectomy in 2013. I have radiation burns to my left eye and need glasses, radiation burns to left lung, fibromyalgia syndrome ( from taxol) osteoarthritis, tendinitis in both shoulders, fatigue like I have never felt pain all day everyday and clinical depression I think that is it, can't work house a mess etc
      If you have time please email me [email redacted]

      over 3 years ago
    • Robbi's Avatar
      Robbi

      Oh I forgot to mention neuropathy in my feet and hands, the bones in my feet feel broken but they aren't, my back is always painful nobody want to think chemo can ruin your life, yeah I'm happy to be alive but I can't live
      Ps think they censored my email so will check hear later in case you replied xo

      over 3 years ago
    • Robbi's Avatar
      Robbi

      Pss forgot also have early menopause and can't take hormone replacement because I was ER/PR negative I have had enough sorry about punctuation also have chemo brain

      over 3 years ago
    • Robbi's Avatar
      Robbi

      Pss forgot also have early menopause and can't take hormone replacement because I was ER/PR negative I have had enough sorry about punctuation also have chemo brain

      over 3 years ago
    • moonmaiden's Avatar
      moonmaiden

      (((((Hugs to Robbi))))))) I'm sorry you are feeling so bad, I'm also er+ pr+ and I'm also her2+.
      I can certainly understand wanting to deck someone who's telling you to just get up and get some exercise when just getting out of be some days is exercise. What hormone blocker are you on? I went through all of them before I settled on one that I can halfway tolerate, and I have concerns about the long term effects, but at least the joint pain isn't as bad on the one I'm on now. If you have only been taking the one your onc started you with, you may want to try talking to your onc about trying a different one and see if you can find a better fit. They won't let you email me directly from here. I'm certainly glad to have started this thread, as it seems to have really hit a chord in the community. I seem to have a problem communicating with my providers about my needs, but if you go through the whole thread, you will see that some of the others have been able to come up with some stuff that helps them, and also have oncs that can help them in some ways. If you have a problem talking with your onc due to the chemo brain, maybe you can get a family member to help you. I have also posted in this thread a couple of things that I have been doing to help with the chemo brain, and I'm starting to feel a bit more lucid mentally, but the fatigue and aches are still bothering me. There's a lot of good information being posted out here though, and a community of others who know exactly how you feel as this thread has brought out a number of posts from others who thought they were alone in this struggle and thought they were supposed to feel better than this after several years. It's especially nice to find out you're not the only one struggling like this after so much time. Good luck Robbi, I hope you find some things here that will help you!
      Have to quit typing for now, as my fingers have gone numb from too much typing today....

      over 3 years ago
    • tuckercat2's Avatar
      tuckercat2

      Hey guys! Hope all had a fun and safe Memorial Day. I have had a rough weekend trying to sleep. One night it seemed as if every joint I had hurt no matter what I tried or what pain medication I took. Hands and feet hurt almost continuously. I am a Cadd tech, I use my hands all day to move a mouse to do my job. For now I can just deal with it. My concern is what happens when I can't move my fingers anymore? I never thought that after cancer would be so difficult. I am tired, I can work but that is about it for my energy. Cooking? Nope, same for cleaning or doing much of anything else.

      I did have a good Monday! Spent it with my son and his family. Grandchildren are the best! I have 3 grandsons and they have an awesome Mom. She just handles all the chaos with a smile and a hug.

      HUGS to all!!!

      over 3 years ago
    • moonmaiden's Avatar
      moonmaiden

      (((((((((((((Tuckercat))))))))) Hope your joints feel better soon! As for me, I'm discouraged, feeling let down by the cancer industry.... You aren't the only one having these struggles, my house is a wreck and I live and rest up for work all week for the most part....been reading an article that leaves me even more discouraged about the cancer industry....http://healinglifeisnatural.com/berkeley-doctor-claims-that-people-die-from-chemotherapy-not-cancer/

      over 3 years ago
    • tuckercat2's Avatar
      tuckercat2

      I know and it is so discouraging! I just want to live a normal life and enjoy my grandkids. My mother had a radical mastectomy and never had any other cancer treatment. She is turning 83 this year. It makes me wonder if what I am doing with the awful hormone therapy is just a money making deal for the drug companies.

      I am so tired today that I am having a difficult time working. I do have great bosses! they are paying for a two night stay at a nice hotel near the Riverwalk in San Antonio, Texas. I added a night so that hubby and I can have all day Friday, Saturday and most of the day Sunday to relax. It is suppose to rain so I am going to take IPad, laptop and chargers for both of us, along with the Keurig we have for traveling. Relax is what this is all about!

      over 3 years ago
    • Sharlie's Avatar
      Sharlie

      Thanks for sharing the link moonmaiden, it was an interesting read and one that I agree with. I know it's so discouraging to go through all of this and feel worse off because of it. Fortunately, I did not need chemo and chose not to do radiation and knowing what I know now about all of the toxins, I would not choose it for me. I have even rejected the hormone-blocking drugs because of the side effects they caused and have chosen a more natural route. I am 69 and figured that I am probably more like to die from some other cause than cancer, but I'll deal with whatever comes at the time. I am fighting hard the best that I can with what I have learned from a whole lot of research. They get people on the cancer treadmill before they have enough time to learn anything about what they are doing and it is a huge money-making business. My heart goes out to each and everyone when I read all of the stories in this thread and others on What Next. I know that we all do the best we can with what we know and believe at any given time and I judge no one for their decisions. Wishing you the best as you continue along your journey.

      over 3 years ago
    • moonmaiden's Avatar
      moonmaiden

      ((((((((Tuckercat)))))) ((((((((((((Sharlie)))))))))

      over 3 years ago
    • rachelarmom's Avatar
      rachelarmom

      I too have struggled with depression. Unfortunately all I could do is keep trying and I followed the old adage to fake it till I make it. I forced myself to exercise and pretended to be a normal human being. Pretty soon, I starting feeling better. Then my medications started making a difference. Then I started looking forward to getting out of the house and even exercising. I wish I had a better answer, but all these things take time, a great deal of time. Every positive step leads to that positive outcome.

      over 3 years ago
    • tuckercat2's Avatar
      tuckercat2

      Went to the OC and all my numbers are good. I was relieved. I was getting headaches every day and started to worry. Also I am on a new anti hormone prescription. It was $143 out of pocket for thirty days and that was with a coupon and insurance. Don't think I will be able to afford that one.

      Hubby's plant is closing down between 6-9 months from now. More fun times. Third time one of us has had a company close its doors on us.

      over 3 years ago
    • moonmaiden's Avatar
      moonmaiden

      Rachelarmom, I wish I had that kind of time, but I don't. I don't have anyone here but myself, I have to be able to support myself, and can't find anyone who understands or studies chemo brain or chemo fatigue to treat me for it. Throwing antidepressants and tranquilizers at me only makes me apathetic, I decided to quit taking that stuff because it was just making my whole life worse.

      over 3 years ago
    • moonmaiden's Avatar
      moonmaiden

      (((Tuckercat)))) I'm sorry that you're having financial struggles. My insurance pays for mine, but it was a struggle getting past the deductible. When I am struggling with the cost of my script, there is a local cancer fund that I can turn to through my local non profit hospital. The social workers help to hook me up with stuff like that, maybe there is a fund where you live? Glad your numbers are good!

      over 3 years ago
    • tuckercat2's Avatar
      tuckercat2

      Thanks Moonmaiden! The insurance we have is my husband's, not sure if we can afford to keep it after the plant closes. I will talk to my oncologist, she is very good about finding ways for her patients pay for their medications and treatments. Maybe talk about going every 6 months and going back to the less expensive med. It had worse side effects but I am not sure I am ready to stop. I worry quite a bit about recurrence, like most of us do.

      I am very afraid, so much going wrong and I don't know how to cope with all of this.

      over 3 years ago
    • moonmaiden's Avatar
      moonmaiden

      Yeah, I know, the possibility of recurrence looms in the back of the minds of all of us, a scary companion through the day. You might find some help here:http://www.cancer.net/navigating-cancer-care/financial-considerations/financial-resources Try calling 211, they may be able to help you find resources as well. It's definitely worth a visit with a social worker, not only am I hooked into an opportunity to get help for treatment from a local fund, I'm approved through my hospital for uncompensated care which helps with some of the copays for tests and such, but doesn't pay my doctors. There are also charities which may be available in TX, or there may be other charities in your local area. One charity that is local to me paid some to help me with my heating bill last year. If the plant closes and your husband can't find a job, there are so many things you can apply for. However, there are a lot of things I could have applied for by now, and haven't yet, so I can dig it. Obamacare does help with the insurance premiums if you meet certain income requirements. Medicaid may be an option. Food stamps, heating assistance, I know it's a bit overwhelming, but I may be applying for some of those things soon myself. Good luck, I hope you can find some resources!

      over 3 years ago
    • moonmaiden's Avatar
      moonmaiden

      Is anyone having trouble with their hair thinning out on the hormone blockers?
      Has anyone here stopped the hormone blockers and felt better?
      Has anyone here stopped the hormone blockers for a good length of time and still cancer free?

      over 3 years ago
    • gingerb's Avatar
      gingerb

      My hair is thinning..can't lose weight..

      over 3 years ago
    • moonmaiden's Avatar
      moonmaiden

      Hi Ginger, thanks for answering, I'm having trouble with my weight as well.....

      over 3 years ago
    • tuckercat2's Avatar
      tuckercat2

      I have the same problem with weight. My hair is the same. I have acne and oily hair and can't get it under control.

      over 3 years ago
    • seo's Avatar
      seo

      Hello Web Admin, I noticed that your On-Page SEO is is missing a few factors, for one you do not use all three H tags in your post, also I notice that you are not using bold or italics properly in your SEO optimization. On-Page SEO means more now than ever since the new Google update: Panda. No longer are backlinks and simply pinging or sending out a RSS feed the key to getting Google PageRank or Alexa Rankings, You now NEED On-Page SEO. So what is good On-Page SEO?First your keyword must appear in the title.Then it must appear in the URL.You have to optimize your keyword and make sure that it has a nice keyword density of 3-5% in your article with relevant LSI (Latent Semantic Indexing). Then you should spread all H1,H2,H3 tags in your article.Your Keyword should appear in your first paragraph and in the last sentence of the page. You should have relevant usage of Bold and italics of your keyword.There should be one internal link to a page on your blog and you should have one image with an alt tag that has your keyword....wait there's even more Now what if i told you there was a simple Wordpress plugin that does all the On-Page SEO, and automatically for you? That's right AUTOMATICALLY, just watch this 4minute video for more information at. Seo Plugin
      seo http://www.SEORankingLinks.us/

      over 3 years ago
    • moonmaiden's Avatar
      moonmaiden

      I'm really blue today, trying to pull out of it....I've met a guy I want to get to know better, but worry about the cancer. My hair is falling out again, I think it's the hormone blockers, it's getting really thin in spots...I quit taking the hormone blockers a week or so ago, my primary told me she wants me to consult my onc, but how can I? All he'll do is try to talk me into sticking with it while my life gets ruined! I hope you guys are doing well today.....

      over 3 years ago
    • tuckercat2's Avatar
      tuckercat2

      I am considering doing the same thing. I am tired of waking up in the middle of the night by the pain in my joints, the headache I have and feeling cold because of the sweat. I have been feeling down. I am overweight, my face is breaking out like a teenager, I have less than zero sex drive and I feel ugly. I know I should be grateful for being alive but sometimes it doesn't feel all that much like living.

      over 3 years ago
    • moonmaiden's Avatar
      moonmaiden

      I don't know what to do. I've been living by myself for 5 years of going through a divorce and breast cancer all at the same time. He asked me about the compression sleeve I was wearing a couple days ago, and I told him it was to keep my arm from swelling in the heat because I'd had a couple lymph nodes removed. When is an appropriate time to tell someone about the breast cancer? I'm wondering if I should just send him on his way, but I need to get a life and establish a sense of normalcy, there's no point in continuing if all I'm going to do is just keep existing instead of living. I was seeing someone when I was diagnosed, but he bailed as soon as my hair started falling out. Then I was seeing someone else for a couple years, and he left, in part because I've been so tired all the time, and all the things that go with that. I'm at least feeling a bit more alert and lucid since quitting the antidepressants and tranquilizers, but how can I pursue a decent life in this situation?

      over 3 years ago
    • tuckercat2's Avatar
      tuckercat2

      I don't have any answers. I am married and my husband has and is supportive. I am amazed at how well you are handling it! I am struggling and I have support.

      I started taking an over the counter drug - DHA. It is given to pregnant women to help with brain development in the baby. This is just DHA, and not all the vitamins found in the prenatal version. I believe that it has helped me. I thinking is clearer and I can remember what I am talking about. Maybe the placebo effect, but if it works, who cares why.

      over 3 years ago
    • moonmaiden's Avatar
      moonmaiden

      Tuckercat, quality of life is so important. I'm glad for you that you have a supportive husband.
      On another question on this board someone posted a link :http://www.predict.nhs.uk/predict.html I typed in my info as best I know it, and the results were not really encouraging me to continue on the hormone blockers.... This is how it came out for 100 women surviving 5 or 10 years with various regimens based on similar situations to my own assuming that I have all the info entered right....
      PREDICT Tool: Breast Cancer Survival; Results
      Five year survival
      96 out of 100 women are alive at 5 years with no adjuvant therapy after surgery
      An extra 1 out of 100 women treated are alive because of hormone therapy
      An extra 1 out of 100 women treated are alive because of hormone therapy & chemotherapy
      An extra 1 out of 100 women treated are alive because of hormone therapy, chemotherapy & Trastuzumab
      Ten year survival
      92 out of 100 women are alive at 10 years with no adjuvant therapy after surgery
      An extra 1 out of 100 women treated are alive because of hormone therapy
      An extra 2 out of 100 women treated are alive because of hormone therapy & chemotherapy
      An extra 2 out of 100 women treated are alive because of hormone therapy, chemotherapy & Trastuzumab

      Disclaimer: PREDICT can only provide a general guide to possible outcomes in any individual case. As we are all different, for the more complete picture in your case, you should speak to your own specialist. You may wish to print this page out and share it with your specialist.
      © Eastern Cancer Registry and Information Centre and Cambridge University
      Contact: [email redacted]

      Why the XXX are they so anxious to keep me taking that awful stuff if only 1 woman survives the 5 year mark because of it and only 1 more woman survives the 10 year mark? What are the odds I'm going to be that one woman? And what are the odd I'm going to be one of the 6 who didn't make it to 10 years with no adjuvant treatment? I don't want what's left of my life to be ruined just to be an onco experiment.....:(

      over 3 years ago
    • moonmaiden's Avatar
      moonmaiden

      *sigh*.... I feel taken advantage of and exploited by the industry, and I shouldn't have to feel like that.....

      over 3 years ago
    • Elephant's Avatar
      Elephant

      Hello moonmaiden, it is Elephant.
      I have not checked this posting for awhile. My Oncologist gave me a one month reprieve from Anti-E med. I have felt sooo much better. Still not functioning 100%, but the difference is remarkable. I see my O Dr. again July 4th. I know he will want me back on the anti-E, and am dreading it.Thankfully we have in our province, Blue Cross coverage for medications. So this med will cost around 14$ Canadian. I am so thankful, I can at least afford the med.
      The more reading I do about Big Pharma, the more angry I get There are alternatives, but because they will not make money for the Pharma's. they are not studied. I have a few links if you are interested. Also one of the other ladies who has posted on your blog, has also given me good advice.

      Hang in there moonmaiden , this whole thing sucks, but if we can find alternatives, and then have quality of life improvement, there is reason to be optimistic I just re read tuckercat's posting, and I will look into that as well..
      lots of hugs, Elephant.

      over 3 years ago
    • tuckercat2's Avatar
      tuckercat2

      I agree that quality of life is the most important factor in the equation. I am just so darn depressed! Yesterday my husband told me how much he liked the breasts. I was so angry! I hate them. They are huge and I can NOT feel anything. How could that be beautiful! I was trying so hard not to cry. I hadn't realized how much I hate them. They look like an old woman's breasts, not mine! After all this time it is hitting me how much I miss feeling in the breast area! I hug my grandsons and since they are still small, I only feel with my arms. Cuddling doesn't work all the well since the breasts don't feel, and the area where they removed the fat is still numb also. I didn't realize the feeling in the breasts would be gone forever. Should have I guess, but I had 4 weeks between the CALL and the OPERATION that I could barely think. I promise I am not a whiny person, I just am so tired of being tired, depressed and fat.

      I will get over this as I have with all the other bumps, hills, and mountains in my life. I just never took the time to grieve. Anyone else feeling this way?

      over 3 years ago
    • moonmaiden's Avatar
      moonmaiden

      Thanks Elephant, yes please post the links you're referring to, as it may help others. Hugs to you....
      Oooooh....((((((((Tuckercat)))))))! Of course you are grieving, and of course you feel depressed, and well you should! After all you've gone through it will take time, I almost didn't post here out of fear that others would think I was being a whiney XXX! Grief over the inability to overcome what's been done to me so far is what has driven me to quit taking to hormone blockers recently. It's ok, really, that's what we're here for. I hope you give your hubby a good hug, he's trying to be supportive, I expect he probably misses the real thing also, but wants to be strong and console you.... of course you have something to grieve, you have plenty of things to grieve, one of the things that brought me here in the first place was grief. Feel the way you feel, if there is some real, good reason why you think your feelings aren't appropriate, then try to do something about it, but get a reality check first, your feelings are reasonable for your situation.... (((((((Tuckercat)))))))))

      over 3 years ago
    • tuckercat2's Avatar
      tuckercat2

      (((((((((moonmaiden)))))))))) My husband is supportive and so is my niece and my boss, they are actively supportive, my children are inactive, they listen to me but have little to no reaction or conversation, the rest aren't interested. But I do have three very strong supporters.

      I am 2 years and 7 months from the original surgery which seems like a long time to avoid the grieving process. I have been so busy getting back to work and trying to get back to "normal" that I haven't taken the time to feel. I continued to work up to the day before I went in for surgery. 6 weeks later I am back at work part time. That was for two to three weeks and then I was back full time. I am a cad tech/office manager for a small engineering company which is in the process of growing so I have stayed busy since that time. My boss is great, he was the first to know about the cancer and he called me and visited my while I was recovering.

      Does this get easier?

      Moonmaiden I am so very thankful that you wrote that post. We understand that it isn't whining but anger, bewilderment, pain, depression and all the other emotions we feel while we are on the cancer roller coaster.

      over 3 years ago
    • moonmaiden's Avatar
      moonmaiden

      ((((Tuckercat)))) I am going on 4 years since my original surgery, it will be 4 years in September. You said it yourself why you couldn't take the time to grieve. The first thing first is fighting to stay alive, there isn't any room for grieving until the dust settles. And if your onc did what mine did and prescribed a whole lot of tranqs, there is another reason. As you said, you haven't had time to feel anything for yourself, you were fighting to stay alive, and feeling things on behalf of others and their comfort. Because we're women. That's what we do. I sure hope it gets easier, because I don't know what I will do if it doesn't. I have an appointment with my therapist tomorrow, then in the afternoon I have one with my onc. My primary asked me to set one with him to talk about it, but I don't know what she thinks he can do for me, I've been unable to obtain meaningful help for the side effects of the blockers, and the overall impact from the chemo etc. I just found out awhile ago that aromasin makes changes that are irreversible, I don't think they told me that, did they tell anyone else who is on aromasin here? Shouldn't they tell you that before they give it to you?

      over 3 years ago
    • Sharlie's Avatar
      Sharlie

      I've been reading through this thread with much interest. I wish someone would print it and take it to their oncologist and tell them...."see, it's not all in my head...I'm not the only one." Every time I see more comments here my thought is always the same, they don't really treat the side effects because that would mean admitting that there are real and sometimes severe side effects. Sending you all positive energy.

      over 3 years ago
    • tuckercat2's Avatar
      tuckercat2

      I wasn't told that. Hmmm, my onc said long term effects haven't been found since this is a relative newer drug. I hate being a guinea pig.

      Last visit my onc told me about a test that is done around the 5 year mark to see if I would need to continue with the medication for 5 more years. She said I could take it early. I think I am going to do that. My next visit is September.

      Do you know which changes are irreversible?

      over 3 years ago
    • moonmaiden's Avatar
      moonmaiden

      ((((Sharlie))))))), thanks for the good wishes, I believe that was the game of the onc I fired, he would rather make it out to be something wrong with me rather than admit this stuff can have negative effects. I'm overall a lot happier with my current onc, but don't want to be talked into continuing a "therapy" that is leaving me with diminished quality of life and with questionable long term effects on other aspects of my health and well being...I may just do what you've suggested, I have an apt with onc tomorrow.

      over 3 years ago
    • moonmaiden's Avatar
      moonmaiden

      Tuckercat, that's a good question. I'm having a hard time finding out about it, since I am one of the uninitiated, but as near as I can find out, the drug company claims the side effects can be reversed once treatment is over, but the receptors that are bound are bound permanently? I also didn't know that Aromasin is a steroid, that is worrisome as well.... If the side effects leave when the meds are stopped or not, if it makes permanent changes in my cells, what are the long term effects of it? It was apparently only approved by the fda in 05, that the patients have hardly had a chance to try it for more than 5 years only reinforces my concerns that I'm being experimented on, rather than treated, and if that's the case, I should be told that, especially when you consider they are starting to recommend 10 years, how can they recommend 10 years without a history? If a woman was treated in 06, maybe she doesn't know the long term impact in 2026, and has no way of knowing if she did the right thing, or did she make a trade off to keep cancer at bay only to wind up with emphysema or heart problems because of the treatment instead, what kind of a deal is that?

      over 3 years ago
    • moonmaiden's Avatar
      moonmaiden

      If I have to wait until the 5 year mark before finding out if it's ok to stop, I won't make it.

      over 3 years ago
    • Ruthgreen's Avatar
      Ruthgreen

      Moonmaiden. I just logged on to this site and I not read all your discussion. I had a lumpectomy and radiation and just at a year out from last treatment. Have any of your Drs talked to about supplements. Has your vitamin D levels been checked. I take arimedex. Had fatigue also and joint pain. Already on Vitamin d prior to cancer. Added B12, omega3 and turmeric. Friends who are being treated by MD Anderson were referred to a naturopathic and that was there recommendations. Asked my Dr. He said try it. Has helped me greatly. Feel like myself again energy level really good most days brain fog gone. Still have some joint pain but once I get going for the day it is better and can do most anything I want. Good luck to you.

      over 3 years ago
    • moonmaiden's Avatar
      moonmaiden

      Hi Ruth,
      I have been doing a lot of things to try and overcome the fatigue etc. I am off the hormone blockers for the time being. Had it out with my onc the other day, his response was that it takes courage to come forward and say that I just can't do this. I made an apt just to talk to him about it after having a physical with my primary, she asked me to discuss it with him. So for now I'm getting a break from it "for a few months". I am doing a lot of things, vitamin d, just added geritol liquid to the multivitamins I was already taking, drinking vitamin water, and a number of more unorthodox therapies that you can read about here such as karaoke and lapidary to improve my attention span, memory, and patience. I wish I only had a lumpectomy and rads, that is what they told me at first, but now I'm also trying to overcome chemo and herceptin as well. It's only a few months ago my hands stopped shaking so much and I stopped falling so much. I never got to have a break to recover before they started throwing the hormone blockers at me too. Now I am being given a chance to try and recover a little better. I'm feeling more lucid and alert now that I am no longer taking xanax and antidepressants, there was a time when that was appropriate, but not anymore. Today I am feeling better than I have in the past five years, and that is way to long to feel that crappy. Still get tired too easily and have trouble with focus, but working on it.

      over 3 years ago
    • moonmaiden's Avatar
      moonmaiden

      I've been supplementing with d, levels were checked just a couple weeks ago, and very good.

      over 3 years ago
    • Larae55's Avatar
      Larae55

      The side effects should be addressed. I am with you, I still suffer after three years of my surgery. I can't work I'm tired. Still brain fog. And the worst part is there is nothing out there for help. If someone knows of organizations that help once your out of active treatment please let me know.

      over 3 years ago
    • moonmaiden's Avatar
      moonmaiden

      I'm sorry to hear that you're still suffering too, it's awful, and I really don't understand the attitude of doctors who don't want to help their patients get back on their feet after all that, what is the medical profession or the cancer industry getting out of leaving so many women disabled after treatment? And what do they get out of just throwing antidepressants at them when depression is only part of the problem and a lot of it is because of physical effects of treatment? I just don't get it, I wish some care providers would read this thread and explain it.
      I pretty much just had enough, I have taken it down from 3 different scripts for anxiety / depression down to one, and I had a long talk with my onc the other day about the hormone blockers because I never got a chance to get better from the treatments before they kept pushing the hormone blockers on me, and I want to know how I would do without them. He calls it a break for a few months and then we'll see. I call it I don't want to become permanently disabled and no one is offering me enough reason to do so! I'm still not 100%, but I have improved and my life has improved a lot since getting off all that.

      over 3 years ago
    • tuckercat2's Avatar
      tuckercat2

      I have been considering doing the same thing. I am tired of all this and just want to get on with my life. Next appointment with onc is September. At this time I am feeling better. Still tired and working to lose weight. I am working full time but have little to no energy for anything else. I will re-evaluate once I lose weight and see if that is contributing to the lack of energy.

      Glad things are some better for you moonmaiden. I wish they would read this thread and give us the information we need. We fight cancer to live, not to barely make it through.

      over 3 years ago
    • moonmaiden's Avatar
      moonmaiden

      Amen (((((Tuckercat))))))! Yeah, my former onc kept pushing them on me, tried all of them, and then wanted me to try off label uses of some that are for metastasized breast cancer. Kept telling me that I had a 50% better chance of survival with them than without. I'm skeptical about it though, I think they may very well lump together the women who have been past menopause with the 30 somethings, and really, if I were that young a hormone blocker and removal of ovaries may very well be the thing to do, but I'm not really so sure of the need for that in my situation after looking at that predict tool that I posted farther up the thread, and I'm pretty sure that living a happy life is way more likely to keep me healthy than being a professional cancer patient on disability. I want to lose weight too, according to my primary I've lost 14 lbs. in the past 6 months, but I'm still way more than the optimum weight for my age and height, and still need to lose another 15 to 20 lbs to get where I think I should be. Working on it. Not 100%, but using the inhaler way less than I was, and up and doing things way more than I was. Somewhat overwhelmed when i look around at the million things that have been neglected the last 4 years, it's tough to get started, but it sure does make me happy to see some progress! All you can do is make the best decision you can for your situation.

      over 3 years ago
    • Elephant's Avatar
      Elephant

      Hello moonmaiden, it is Elephant. Sorry I did not get back to you with links. The more I read the more confused I become. I saw my Oncologist July 4. I am back on Anti-E medication. This time I am on the original, not the generic. Still somewhat wonky, but not nearly as bad as before. All Drs. except my Oncologist said it would not make a difference. But it has made a significant difference. I have to watch my fatigue level. When tired I become fogged in again.
      Not really sleeping well, so take siestas during the day. One bonus of being past the golden yrs. and into the rusting years. I would still like to try Cannibus oil. Just have to be very careful re supplier. All MD's nix this. Not surprising./ re-links-- try Medscape, anyone can join. You just have to sign up. I also find the British sites helpful. Then when I go on natural medicine sites, I become even more confused again. My goal at the moment is to be around and "reasonably healthy " til July 2017. Hopefully longer than that, but that is my current goal. I do firmly believe all of this is harder on you women who are much younger than myself. I did go off of my initial Tamoxifen, due to side effects. Rolled the dice, and lost 3 yrs. latter with almost certain mets. of breast cancer to my lungs. Still wonder if they had left the original very small malignant lesion alone, what the outcome would have been???? Not sure if anything I have said makes any sense, or is of any help to you or other ladies. However, "I am presently signed. "Very confused" I will update if I lean anything more definite. Hugs, Elephant.

      over 3 years ago
    • moonmaiden's Avatar
      moonmaiden

      ((((((Elephant))))) Thanks for your answer, I sure hope it hasn't metastasized, and hope that you make your goal and beyond. It is certainly a worry to me that I'm "taking a break" after all the stuff that has been pushed on me, I hope I don't met I'm still not on top but feeling way better than I have in 4 years.... It is very confusing indeed, and yeah, you're right, the Brits seem to be offering way more attention to helping patients with the long term after effects than what is available in this country, and it's really kind of bothersome that American providers should give so little attention to their patient's comfort and support.... all I can do is the best I can with what I've got, for now that means trying to stay away from those vicious meds.....

      over 3 years ago
    • moonmaiden's Avatar
      moonmaiden

      It kind of amazes me how long this thread has become and what a chord it has struck..... I really appreciate the support from all of you and the knowledge that it isn't just me and I'm not mentally ill for feeling this way.....:)

      over 3 years ago
    • tuckercat2's Avatar
      tuckercat2

      I was surprised to find out the so many were going through the same things I was. I had stage 1A - lobular carcinoma and find it confusing that I have to go through this long period of time with the hormone killer pills.

      I am doing better and I think some of it is because I am taking an OC med for memory - DHA. This is also found in the vitamins that pregnant women take to help develop the brain in their babies. Might be just wishful thinking, but I seem to remember better now.

      over 3 years ago
    • moonmaiden's Avatar
      moonmaiden

      Good for you tuckercat, great to hear!

      over 3 years ago
    • DebbieI's Avatar
      DebbieI

      I would recommend seeing a naturapathic doctor. Mine worked at Cancer Center of America for 5 years so she knows both sides-medical and naturapathic. Great improvement in my quality of life - for neuropathy, chemo brain and fatigue.

      over 3 years ago
    • moonmaiden's Avatar
      moonmaiden

      Good to hear Debbie! I'm not sure we have anyone qualified within a couple hours of here though.....I'm trying to get up the energy to eat better, I think that would help a lot.....

      over 3 years ago
    • tuckercat2's Avatar
      tuckercat2

      Eating better helps, I think. I am still trying to do that. I have stopped eating white bread and cut down on all bread.

      I hope everyone has a great weekend. I am so glad for all of you here! I'm not crazy, or if I am, I have a lot of people just like me!!!

      HUGS!!

      over 3 years ago
    • moonmaiden's Avatar
      moonmaiden

      ((((tuckercat!)))))))))

      over 3 years ago
    • Rin's Avatar
      Rin

      What works for some doesn't work for others. I too have no umph...I also deal with chemo brain, among other things. I finally found adderall as an aide to get me off the couch every day. It is used for people with ADD, it also helps with energy. It isn't for everyone but I found it also helps my mood swings. Consider discussing this with your regular physician, it works for me, although it isn't a complete fix it helps a ton. Good luck.

      over 3 years ago
    • tuckercat2's Avatar
      tuckercat2

      I am unable to take adderall since I have difficulty in sleeping. I wish I could, I tried it before by PC vetoed it and it was great to have energy. I am sleeping better with help from a drug for Bi-polar disorder. I find it strange that we are using drugs that are primarily used for another illness or disease. I have been asked if I had been diagnosed as bi-polar. I tell them, nope just cancer! Gotta have fun where you can!

      over 3 years ago
    • moonmaiden's Avatar
      moonmaiden

      Rin, I wish I could discuss it with my physician, when I brought it up to my former onc, his response was "I'm not going to prescribe something just to make you feel good" and generally made me feel like I should be ashamed to even ask for such a thing. I also asked my primary and she also didn't want to prescribe it. The shame has been such that I have been unwilling to take it up with my current onc. I don't know why they want to act like they are in the stone age around here, I have looked up about it, and there are some physicians trying that or ritalin or a variety of other things to help the patients, but none of mine seem to know anything about it, or just don't care, I don't know what the answer is, but that sort of stuff is what prompted my original post to this thread. I make do with a combination of sudafed and vivarin, and would really rather be trying an actual prescription that they can monitor instead of feeling that I have to go it alone. I have high blood pressure and would really rather not feel compelled to treat myself because my physicians *WON'T* treat me for these issues.

      over 3 years ago
    • moonmaiden's Avatar
      moonmaiden

      You would think it would be in our physician's best interest to help us get back into our lives instead of more cancer, but they all seem intent on leaving us all disabled and more likely to get cancer again. I'm so disgusted with the cancer industry as I've experienced it.

      over 3 years ago
    • pinklady's Avatar
      pinklady

      I am with you Moonmaiden.. I am now battling lymphedema, gained 50 lbs , tired all the time, neuropathy in fingers and toes that I got while getting chemo. Now an uncontrolled diabetic!! It seems like I take one step forward and get knocked 10 back. I stopped anti depress pills.. joined our local cancer support group and it has helped alone with a cancer dr who listens and understands.. I am a fighter AND refuse to let this rule me.. BE POSITIVE

      over 3 years ago
    • Elephant's Avatar
      Elephant

      Hello again moonmaiden it is Elephant,
      I have been thinking of you and wondering how you are making out, now that you are off the Anti-Estrogen medication? Reading this thread it appears you are feeling better. I am presently taking a one week break from the Anti-E. I have a wedding next weekend and would like to feel somewhat "with-it". Certainly do relate to trying to catch up from all the time on treatment.
      My new to me Anti-E is not as bad, if I have nothing pressing to accomplish. However the longer I am on it, the worse the symptoms seem to become. (again)! Hoping you are still feeling better. hugs, Elephant

      over 3 years ago
    • moonmaiden's Avatar
      moonmaiden

      (((pinklady))) (((((Elephant)))) Hi everybody. Physically I am feeling a lot better, but still somewhat limited in my energy, I'm good to go for a day or two and then need to rest but over all feeling better and getting more done. So now my car died. And with all the issues I have been having the last two years trying to feel better, I don't have any money to buy a new one in part because of feeling to crappy to work much, and the cancer and divorce taking all the money I would have used to buy stuff to sell. So I'm a bit overwhelmed today, but at least doing better physically than I was....

      over 3 years ago
    • Elephant's Avatar
      Elephant

      Well that certainly sucks !! It is three steps forward then two back. No wonder you are overwhelmed today. I think most women would feel overwhelmed, and most of the general population have not gone through what you have in the last number of years. I am glad to know you are feeling physically stronger. That is a big positive. Hopefully the mental strength will improve with time. My understanding is there is a long wash out period for the Anti-E meds.
      You will also be adjusting to a new normal re hormones. Financial stress will also take its toll.We are presently suffering cash flow difficulties, for different reasons. So I can truly relate to your problem. I hope you will be able to resolve this stress issue. Sending you huge virtual hugs. Please know you are not alone.hugs Elephant

      over 3 years ago
    • moonmaiden's Avatar
      moonmaiden

      Thanks Elephant, back atcha!

      over 3 years ago
    • Cotton's Avatar
      Cotton

      Just the looks at the many many comments is proof positive that women experience their diagnosis treatment and return to life without treatment in their own unique way. This is in part due to our own genetic make up and our character. I hope that this overwhelming ordeal will bring some positiveness and good will into your life so that you can meet your every day challenges feeling empowered.

      over 3 years ago
    • moonmaiden's Avatar
      moonmaiden

      Hi everybody, I'm here to offer an update, and some thoughts. I have decided that I really don't have the wherewithal or the help medically or otherwise to try and hold down a full time job. The past couple of weeks I have had to work full time for 6 hours or more per day all week. After only a few days of it, it got to a point where I was way too fatigued, and came in to work really hardly doing anything, not being able to think, dropping things, breaking things, and otherwise really not able to keep up. I have decided to discuss going on disability with my doctor today. The trouble keeping up all week had a part in it, and the election clinched it, as I would not have any insurance at all today if it weren't for the subsidies in Obamacare helping me to afford it. I am working on some things at the moment in the way of trying to find other less taxing ways to earn income, but it will take time. If I'm unable to make a very large difference in my income next year, I will quit business altogether so I can apply for things like medicaid while I still have one more year of alimony to come. I also have a question for you guys. What do you think about charity XXX? Do you think it affects the way everyone around you perceives the way you should be after cancer treatment? Do you think it affects the way your doctors think about you after cancer treatment? The thought I was following today is this: When I got out of the treatment chair, I was supposed to trot my skinny bald XXX out there and run a 5k to support my sistahs who were just being diagnosed, mostly by charities that have never done much of anything for me to speak of, but who have tried to sell me expensive stuff. Local charities that don't use charity XXX to advertise have done way more to help me, I can't thank them enough, and I am more than willing to do anything I can to try and help raise funds for them or simply promote them. One in particular I would like to thank most profusely is the Red Devils inc., so if you are anywhere in the vicinity and have some cash to spare, please do! I think I might ask this as a separate question too. But that is what is on my mind today, our doctors are people too, do they buy in to charity XXX that portrays us as heroes running marathons, and does that affect their treatment decisions when a patient asks for help to get back on her feet?

      over 3 years ago
    • moonmaiden's Avatar
      moonmaiden

      The word that is xxxx out is charity p to the o to the r to the n..............

      over 3 years ago
    • moonmaiden's Avatar
      moonmaiden

      Cotton: This character prior to chemo, owned a small business, routinely worked four 10-12 hour days or more in the course of that business, kept the house, not in ideal shape, but in good shape, routinely lifted 50 pounds without a problem, and did that for 18 years at the time. Part of the reason I am having a problem getting medical help is because of the idea that it's a character flaw that I don't just suck it up, get over it, etc instead of an ongoing fallout from poison being run through my body.

      over 3 years ago
    • geminitonia's Avatar
      geminitonia

      How are u doing today might I ask after all these emotions? I went through the same emotional roller coaster ride also and sometimes still allow it to get n my way but I have finally allowed God to take over bc see breast cancer fd me up n so many ways some people will never understand so I just had to finally hand it to Our God All Mighty himself. Please get back with me on how ur feeling today❤

      almost 3 years ago
    • moonmaiden's Avatar
      moonmaiden

      Hi Geminitonia, Well thank you for asking, I hope you're doing well :) I'm still nowhere where I want to be at the present time, and some of my friends have told me anywhere from 4 to 6 years after treatment before they started to feel "normal" again. At the present time, if I complain that I feel tired, they tell me I'm not really tired, I'm depressed, and medicate me for depression. Otherwise, I'm working very hard to bring my energy back up, but I view the lack of sufficient rehab to be a set back. I've come to this conclusion: That the various specialists on my treatment team just plain don't know what to do next. That they are wrapped up in their specific area of specialty, and didn't really know where to send me for rehab, or in what ways I should get rehab that I could pay for with my insurance. Now I don't have insurance that will pay for it, only a bare bones policy that is all I can afford with a history of breast cancer. I needed them to know what to do to help me with rehab back when I had decent insurance. I have pretty much had to see to my own rehabilitation without the proper knowledge or guidance, because I, as a patient don't know what specialists would really be of help to rehab me, and I expected my treatment team to know what was next, because I think just telling me to eat better and join a gym I can't afford when I can't even get up off of the floor unassisted falls way short of appropriate advice. (I can get up unassisted now, but I couldn't two years ago, and couldn't put together two brain cells to know what to do...) It took me all this time to even find the right search terms for what I was actually looking for, and now that I have finally found the right search terms, I don't have sufficient insurance to get that sort of help.
      To anyone who may need physical rehabilitation after cancer treatment, don't bother with search terms like "treatment for chemo brain" it will be a huge waste of your time, and when you try to bring it up to your onc you will just find embarrassment.
      Use the search term "specialists who provide physical rehabilitation after cancer treatment". You will get better results to find what sort of specialists you need to look for.
      I truly don't understand why such specialists are not at the places I have had to go for treatment, but I was never referred for anything of the sort.
      If I had a sufficient background to put out a shingle as a therapist, I would work a niche market helping patients to get back on their feet after treatment, either through whatever therapies I'm able to provide, or in the form of being able to connect with the patient after treatment to evaluate the patient and to know what sort of services the patient could or should be referred for, whether those services are for physical therapy, lymphatic therapy, which was the only pt my onc referred me for, behavioral therapy, psych medication, endocrine specialists, etc. There is no such person at the facility I go to, or if there is, I was never referred to such a navigator. If I had the right background, I would become such a navigator, and do whatever I could to get hooked up with a treatment facility. Somebody out there does have a background in therapy, and is missing out on a wide open business opportunity, because the oncs don't seem to be able to look beyond their area of specialty. So, eh, I'm doing better than I was, and working hard to get better on my own, but it just makes me upset that sort of help hasn't been available to me, and should be available to all cancer patients. I'm still thinking about applying for disability, I don't want to, but now that I keep getting thrown into a box marked depression, I think I should. I also try to hand it over to God, but am mindful that God leaves some things up to us to take care of. I just wish I were a licensed therapist who could do that sort of navigation work. So, that's how I'm feeling today, still tired, and in a box marked depression instead of getting help after chemo and lyme disease. I just keep plugging away at it on my own mostly....

      almost 3 years ago
    • tuckercat2's Avatar
      tuckercat2

      Hey Moonmaiden! I wish you lived close to Houston, Texas. My onc was so upset that you could not find one to treat the side effects. Anyone around Houston my oncologist believes in quality of life as much as quantity of life. Her name is Dr. Naqvi @ Premier Oncology. She has worked hard to give me a good life - after I told her my gynecologist gave me a new script for hot flashes, but now i was wanting to sit and cry she asked if she could call them to get more info on this new medication. She then called my gynecologist to see what he gave me and then fixed the problem, the new stuff was a very low dose and I needed a higher one. So she gave me the script I need and it much better! Hot flashes almost gone and no more crying. I am praying for you Moonmaiden. I wish I could do more~

      almost 3 years ago
    • moonmaiden's Avatar
      moonmaiden

      (((((Tuckercat))))) Nice to hear from you girl, I've been wondering how you're doing! I'm glad to hear that your onc takes an interest beyond pumping chemicals. I wish that mine would think beyond their specialties to what comes after. And I still hold a gut full of anger toward my surgeon for not listening to what I was telling her about my life, and sending me to the for profit place instead of sending me to the non profit place where I would have gotten a lot more help and support for my situation. I don't know what to do about that, just gotta keep trying to get over it, but my surgeon, the only voice she hears is her own, and I am all the more impoverished because of it. I wish I lived in Houston too. Thanks for the good thoughts, I appreciate it, and send some your way as well....

      almost 3 years ago
    • Bengal's Avatar
      Bengal

      Wondering why this string just stopped over 2years ago? This is SO depressing to read but I am sharing this nightmare. Part of me wants to stop all medication right now. Another part of me is terrified if I don't continue with the hormone inhibitors the cancer may return and I NEVER want to have to repeat that little adventure. One doctor told me I just need to be grateful to be alive. There's a huge difference between being alive and living. I haven't read all the comments; just to many (and too depressing) but one physical activity I have found that is wonderful is swimming and water exercise in a warm water pool. When I am in the water I miraculously do not hurt. Unfortunately, I can't live in the pool!

      7 months ago
    • ChildOfGod4570's Avatar
      ChildOfGod4570

      Oh yes, I am with you, Bengal. I wish I didn't have to be in Tamoxifen for 10 years, but the cancer I hd was aggressive, and I don't want it to come back. Side effects aren't so bad; I can keep hot flashes under control, and I sleep on a shcedule. The only thing I still hate is the wieght gain. I exercise like a fiend ... most of the time in the pool ... but can't seem to drop the weight. When the pool isn'e an option, I have a mini-eliptical trainer in the corner, and I use in thirty minute sessions, 2 a day or 1 time if the day is too full of other stuff. I have osteopenia, thanks to cancer treatments and am trying to exercise in ways that will keep my bones from getting worse. I already take calcium+D3, Calcium, and D3 pills per my oncologist's advice. Not only do too many doctors fail to meet patients' emotional needs before and after treatment; they also don't always warn us what could happen to us such as getting osteopenia or needing other surgeries you wouldn'thave considered otherwise. It's been a year since my hysterectomy now, and I'm doing fine in that department. HUGS and God bless.

      7 months ago
    • Bengal's Avatar
      Bengal

      Yes, my oncologist said I have a very aggressive HER2+ type of cancer. Treatments and testing were a year+ of tortures I never want to repeat. but I cannot live like this for NINE more years. I have gone from being a strong, active and fun loving person to one who now struggles to get through the day functioning at a rudimentary level. I live for my time in the pool which is the only time I don't hurt everywhere. I was told anastrozole would give me the best chance to avoid a repeat tumor or , god help me, mestastisis. I have researched alternative drugs but they all sound pretty much the same as far as side effects. I am reaching wits end. I have been diagnosed with PTSD and see a mental health counselor. It does help me cope but it doesn't change anything. My hospital has just hired a new oncologist whose specialty is BC. I hope she proved to be more sympathetic to the need for post treatment follow-up understanding that just because the treatment stage is over I am not "done" as I was told at the time!

      7 months ago
    • ChildOfGod4570's Avatar
      ChildOfGod4570

      I think too many doctors think the journey is over just because active treatment stops. We have milestones for when we finish chemo, come out of a successful surgery, or leave the radiation center for the last time; however, the pills carry on for years and years, and so does the stress. For a long time, I was like a little girl, fearing every doctor's appointment because I didn't know what they were going to diagnose me with next and what unpleasant thing they were going to do to me. Many of us feel like we were left on Gilligan's Island once active treatment was over and we stopped being the center of their attention. Yes, we went to check-ups, but there was always that nibbling in the back of our heads "What if it comes back?" "Why am I suddenly fighting this alone?" "Why turn me loose now; I don't feel like my old self yet?" If you want my humble opinion, the active treatment is the most aggressive part of the cancer journey, but it's the survivorship part that's the hardest because of all the unknown variables, both physical and emotional. HUGS and God bless.

      7 months ago
    • Bengal's Avatar
      Bengal

      I think the one thing oncology providers need to catch up on is just what you've said, a huge part of their job needs to happen after treatment is over. Treatment is an intensive immersion in stopping this crap in it 's track but the real journey starts once we walk out that door. That door needs to remain open to us. I don't like the term survivor. Can't really articulate why but I don't. I guess to me "survivor" means you've been through something and out the other side. I feel more like a traveler on an ungoing, neverending journey. A very difficult journey with many hills and valleys, obsticals, pitfalls and, yes, the occasional oasis. So, call me a traveler.

      I stopped taking my anastrozole two days ago. When I went to take my morning handful of meds and supplements I just couldn't take it. I am so tired of feeling like a zombie and hurting everywhere. I have spoken to a nurse at my oncology center and am waiting for a return call for an appointment to speak with a provider to try and figure something out . I am terrified of the thought of recurrence but I cannot live like this for NINE more years!.

      7 months ago

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