• Bloodproblems' Avatar

    Bloodproblems asked a questionMultiple Myeloma

    Do you keep your cancer to yourself or do you wear it on your sleeve?

    10 answers
    • Bengal's Avatar
      Bengal

      I kept it to myself and closest family at first; until I had time to process the diagnosis myself (still not sure I've successfully done that. I'm almost three years out). I don't advertise it but I've learned not to flinch every time I hear the word "cancer" and I will talk about it if anyone wants that conversation.

      4 days ago
    • Created07's Avatar
      Created07

      I didn't talk about the first three much. The first one, endometrial, is a very private one. Thank goodness for 'What Next' because I have never felt so alone. The next one, breast, has a whole sisterhood. But still it was mostly between the 'sisters', family and 'this' family. The last 'non-hodgkins', the hair was gone. My sweet son-in-law bought me a lovely (expensive) wig. When I wore it out, people would look, turn and whisper. While in the hospital the first time, a precious little nurse ordered me a $20.00 pale pink bob. That changed Everything. everywhere I went it opened conversations. That was wonderful. I had no idea how many cancer patients were hungry just to be able to talk to someone who understood. Each one now knows about one of my greatest blessings....What Next. Oh, I said the first three. The third one was found by my plastic surgeon and cut out by my dermatologist..malignant melanoma...end of story:)

      3 days ago
    • MiriamMarino's Avatar
      MiriamMarino

      When I speak with my family and friends, I tell them I don't wish to speak about my cancer and the treatment for it, and that I wish to hear about what's happening in their life.

      about 8 hours ago
  • Bloodproblems' Avatar

    Bloodproblems asked a questionMultiple Myeloma

    I've read about chemo brain and I've heard the term chemo-fog.

    6 answers
    • Bengal's Avatar
      Bengal

      I did read in an article that some are trying to attach chemobrain to PTSD as another side effect of psychological trauma. I don't buy it. I believe that all the poison they pump into us to try to kill the cancer has got to have an effect on brain cells. That in itself is, of course, a type of trauma but physiological like brain injury. We need to work to retrain our brain to focus.

      5 days ago
    • GregP_WN's Avatar
      GregP_WN

      I have dealt with this for 32 years, that's how long it has been since I've had chemo. 32 and 31 ago. Since then I've been put to sleep with anesthesia so many times I can't remember. That also has an effect on it. As far as the question, generally, they are considered the same thing.

      4 days ago
    • andreacha's Avatar
      andreacha

      For this reason I subscribed to and just received my "Brain & Life" magazine. It covers all info about your brain and has some good advice to help our situations. It is published by the American Brain Association and the American Academy of Neurology. There's no charge.

      4 days ago
  • Bloodproblems' Avatar

    Bloodproblems asked a questionMultiple Myeloma

    I am being treated at the major health facility near where I live, and they accept my insurance.

    5 answers
    • JaneA's Avatar
      JaneA

      Many facilities now treat doctors and or their practices as subcontractors. I'm guessing that is what is going on.

      24 days ago
    • Bengal's Avatar
      Bengal

      Just one thing that universal health care would fix. My eye care center just dropped all of it's patients covered by a particular insurer. Just informed them they were no longer welcome, find somebody else. Up here there are not that many choices but it was either find another doctor or change your insurer. Seems strange though that this could happen within the same facility but apparently it does. And, as I 've said before, people who are dealing with serious illness (or any illness) DON'T need to be dealing with this crap. Sorry you have to.

      24 days ago
    • BuckeyeShelby's Avatar
      BuckeyeShelby

      I'm the one who works for a medical TPA. We aren't insurance; we just administer claims. We work w/a LOT of different networks from the big guys, like Cigna, UHC, Aetna. In a lot of cases, the contract with the insurance company is with the physician, not with the facility. So one doctor could be in network, but the guy across the hall in not. Now, most of our plans have what is called an "ology" benefit. That means if you go to an in network ER, it doesn't matter if a dr in is in or out of network. Or if you are in surgery, your anesthesiologist doesn't need to be in network, since you can't generally choose that specialist.

      24 days ago
  • Bloodproblems' Avatar

    Bloodproblems asked a questionMultiple Myeloma

    Has anyone started taking antidepressants after you were diagnosed?

    8 answers
    • DJS's Avatar
      DJS

      Absolutely. They made a world of difference for me, and I am so grateful I had them. Remembering that they help restore your chemical imbalance at a time when chemo, added medications, and personal stress are likely to knock it off its usual even keel may make it easier for you to decide to let this help you get you back to center yourself. That’s all a good antidepressant should do - let you be you; not plaster a fake smile on your face. Anti anxiety meds are great, too, if you need just temporary boosts. Get help if/when you need it.

      about 1 month ago
    • PaulineJ's Avatar
      PaulineJ

      I've never taken anything with reason.And I've survived with a reason.

      about 1 month ago
    • po18guy's Avatar
      po18guy

      Sorry to hear this. Withdrawing into the self is a natural, but not very beneficial reaction. Counseling of other psychological assistance might be worth looking into. If you are able,some form of helping others, from volunteer work to online interaction will expand your horizon, exposing you to others who share your situation, or are actually in worse shape. Focusing on them takes your focus off of yourself, and your self-worth will gain from the knowledge that you have helped.

      Balance this with keeping up with doctor's recommendations as to activity and medication. But, you are reaching out here, and so there are others that may also benefit from contact with you.

      Lastly, there is an anti-depression/anti-anxiety drug called Trazodone which can be very effective. Non-addicting, it is available in low-cost generic form. It is a 'clean drug' in that side effects are mild and actually beneficial (they help you to sleep soundly). You may start and stop as you need to. Consider asking doctor about it.

      If you do take it, do so as you are lying down to sleep. It is metabolized quickly and best to be close to your pillow when you take it. Otherwise, you'll be stumbling around like a drunk - don't ask me how I know!

      about 1 month ago
  • Bloodproblems' Avatar

    Bloodproblems asked a questionMultiple Myeloma

    Trouble with sleep, how do you cope with it?

    7 answers
    • Leuky's Avatar
      Leuky

      Thank you all for your responses, I will try some of these too.

      about 1 month ago
    • po18guy's Avatar
      po18guy

      ^ What cllinda said. My hematologist recommends, and one of the oncology nurses uses Trazodone for sleep. It is intended for anti-anxiety and anti-depression (both applicable to cancer patients!), but its immediate effect is the production of sleep. According to my hematologist, it is a "clean drug" in that its side effects are low, it is not addicting and you may start and stop it at will. It is generic and affordable. I normally take 25mg, as 50 has me stumbling around even worse than usual! So, if you do decide to try some, take it right at bedtime. I have found that my body metabolizes it very quickly, seemingly within 15-20 minutes.

      about 1 month ago
    • JazzQueen's Avatar
      JazzQueen

      A SIMPLE, NON-TOXIC, INEXPENSIVE SOLUTION TO NOT SLEEPING IS BENADRYL. It is a benign medication, used for allergies, it doesn't interfere with any of your meds and is non-habit forming. I use the caplets, and normally don't even take a whole one. Half to a third usually is enough .. I get ready for bed, take the caplet with hot tea an 20 minutes later I feel the drowsiness .. aaahh. :-) Discuss the use with your medical team.

      about 1 month ago
  • Bloodproblems' Avatar

    Bloodproblems asked a questionMultiple Myeloma

    I have developed shingles due to nerve damage from treatments, they say.

    9 answers
    • MiriamMarino's Avatar
      MiriamMarino

      Was anyone taking Acyclovir medication during chemo treatment?

      about 1 month ago
    • JazzQueen's Avatar
      JazzQueen

      I did have shingles once due to stress. Be gentle with it!
      However, a daily dose of the amino acid L-Lysine should reduce the length of time your shingles is "active". And a daily dose should keep you from having a recurrence. There is a medication the doctor can give you .. Acyclovir, which also has a generic. Discuss supplements with your medical team. CBD oil has seems to have great results for leukemic cancers. Hope this helps you!!

      about 1 month ago
    • JazzQueen's Avatar
      JazzQueen

      Another supplement that should help is MSM. Keeps the cell walls free of plaque. Get it in the canister and add a scoop into your drinks. And then increase your water intake for the first 4-6 weeks as it removes toxins from your system.

      about 1 month ago
  • Bloodproblems' Avatar

    Bloodproblems asked a questionMultiple Myeloma

    Is it common to have treatment delayed while you are being sent to a variety of doctors?

    4 answers
    • po18guy's Avatar
      po18guy

      Where are you going? "All the options" are normally presented in one or two visits to a National Cancer Institute designated comprehensive cancer center. if you are not at such a facility, and diagnosed with Myeloma, I would head to one without delay. Find the nearest center here. It is worth traveling, if need be.
      https://www.cancer.gov/research/nci-role/cancer-centers/find

      about 1 month ago
    • GregP_WN's Avatar
      GregP_WN

      I have a little of that going on now. There was some question about if I can have any more radiation after already having it twice in my lifetime. Also, there was questions about if I could have chemo and whether it would be effective if I couldn't have radiation in combination. So I have been to both of those in addition to my surgeon, all of this was after the tumor board at my facility met and discussed my case. I go Monday to see the radiation oncologist to get his view on what they can do for me. I have been on hold since Dec 3rd. Yes, the waiting is a killer.

      about 1 month ago
    • NeckCancer's Avatar
      NeckCancer

      I had to wait for a month and a half to see my oncologist after I was having a biopsy and got the diagnosis. It's hard to wait for sure but I couldn't get in to see him any sooner. I even tried other oncologists but the better reputation they have the longer you have to wait. Your doctors are probably just covering all the bases for you.

      about 1 month ago
  • Bloodproblems' Avatar

    Bloodproblems asked a questionMultiple Myeloma

    Do you get anxious about leaving home and traveling to relative's homes while in treatment?

    5 answers
    • MiriamMarino's Avatar
      MiriamMarino

      I ask for a break in treatment if I wish to travel.

      3 months ago
    • annetteOR's Avatar
      annetteOR

      We're all taking different chemo and at different places in our treatment, so your mileage may vary. I wear a mask for all air travel, from the time I get out of my car at the airport until I get in a car at my destination. Per my doctor's advice, I change them every two hours. I make sure to take my vitamins, including extra vitamin C, in advance of travel. I get a flu shot at least two weeks prior to holiday travel. In spite of my precautions, when I travel every holiday season I typically get a cold/sinus infection/upper respiratory infection at some point during or after the trip. I'm a multiple myeloma (chronic blood cancer) patient and will never be over this, so it's worth it to me. (And I don't get sick if I travel during summer.) Ask your doctor for advice; should you or shouldn't you, what precautions you should take, and what to do if you need assistance while away. I'm a stem cell transplant patient, and have an emergency number for the transplant center that I was able to give to an urgent care center for a consult about next steps given my situation. If, after having precautions and plans in place, it still doesn't feel like you'll be able to enjoy yourself, maybe skip it until another time. Best of luck!

      3 months ago
    • DeborahSue's Avatar
      DeborahSue

      Yes. Always.

      about 1 month ago
  • Bloodproblems' Avatar

    Bloodproblems asked a questionMultiple Myeloma

    Has your Christmas list changed since diagnosis?

    5 answers
    • Charlieb's Avatar
      Charlieb

      Being Jewish I grew up appreciating the Holiday Season more than actually celebrating Christmas. The Holiday Season started the day AFTER Thanksgiving so I was always in a festive mood through out December. Our family exchanged gifts usually sometime during Chanukah. My husband is Presbyterian (mixed marriages do work) and we have exchanged gifts on Christmas. Stores setting up Christmas displays before Halloween, commercials for "the perfect Christmas Gift before Thanksgiving and stores open with Christmas deals has put a damper on my holiday season this year. After 35 years of marriage I don't even know what I want this year. Along with me starting treatment two days ago, My diagnosis 7 years ago did not change anything, the world did. I choose to celebrate life even if I am living with cancer but the world is making that more difficult each year.

      Charles

      2 months ago
    • JaneA's Avatar
      JaneA

      It's difficult to want "things" when facing cancer treatments. Your family just wants to help. Although I'm out of treatment, I don't want stuff anymore. But I'm learning to watercolor so my husband told me to order the lightpad that I wanted and a couple of books. Not the traditional Christmas or Hanukkah present but I'm a happy gal right now.

      My other favorite thing is a fleecy top for winter weather. No one ever goes wrong giving fleece unless the person lives in Hawaii.

      2 months ago
    • Lynne-I-Am's Avatar
      Lynne-I-Am

      @Kp2018, the suggestion of a family photo was spot on. My daughter gave me a locket necklace when I went through chemo. Inside the locket was a photo of my son in-law, my grandchild and my daughter. I wore that necklace to every chemo treatment and still cherish both the necklace and the thought behind it. Another suggestion might be for your family to donate to your favorite charity . My family too, insists on something wrapped to put beneath the tree so I keep it simple, this year it is a pair of slippers. I do appreciate the thoughtfulness and the loving behind the giving.

      about 1 month ago
  • Bloodproblems' Avatar

    Bloodproblems asked a questionMultiple Myeloma

    I'm getting this metal taste in my mouth from treatments, nothing tastes good.

    6 answers
    • MiriamMarino's Avatar
      MiriamMarino

      I understand. It's awful. How about juicing fruits or vegetables and drinking them with a straw? Maybe adding organic protein powder? I'm not saying the taste will change but you will receive nourishment while bypassing the chewing.

      2 months ago
    • DeniseD's Avatar
      DeniseD

      I remember well. I lived on milkshakes made with ensure, icecream and frozen fruit. Banana popsicle tasted good and fudgecicle tasted good too.

      2 months ago
    • Ashera's Avatar
      Ashera

      Ate Kozy Shack? Tapioca Pudding all the time. Watered down lemonade, plastic utensils. Ice cream was awful for me - pudding about as sweet as I could stand. Muscle Milk with 35g protein ordered from Amazon - son gifted me with this...it's pricey but I've also heard of Carnation Instant Breakfast. I switched to 'plain' salt instead of iodized as someone said it helped with metal mouth - and I found I could not tolerate any sea salt or mineralized salt. Most spices tasted like ground up pennies so plain salt was it. It's egg nog time, perhaps that would be soothing? All of this ends. Feels like forever now, I know. MiriamMarino's suggestion of juicing and using a straw to drink fast and not have to chew is a good one!

      2 months ago
  • Bloodproblems' Avatar

    Bloodproblems asked a questionMultiple Myeloma

    After your diagnosis did you ever stand looking at yourself in the mirror and think about the fact there's cancer in you?

    4 answers
    • alivenwell's Avatar
      alivenwell

      If it is any consolation, it is possible for others to have cancer and not detect it. I was diagnosed with no symptoms. I promised a stranger that I would get checked. I knew cancer was there after getting a test.

      2 months ago
    • Molly72's Avatar
      Molly72

      I look in the mirror and see a huge hole in my nose and several other lesser facial scars and wonder what will come next year.

      You are so correct, Bloodproblems, something is trying to eat its way out.

      2 months ago
    • annetteOR's Avatar
      annetteOR

      Not standing before a mirror looking at my body as a whole, but similarly, as a blood cancer patient, I watch the test tubes fill up during blood draws and marvel that the cancer is in there. That too feels like an out of body experience. All the best to you.

      2 months ago
  • Bloodproblems' Avatar

    Bloodproblems asked a questionMultiple Myeloma

    How would you handle being at a family member's house for a Christmas dinner.....

    9 answers
    • cards7up's Avatar
      cards7up

      If you don't think you'll enjoy yourself at all, why go? We just answered a similar question here. If you don't want to go, then don't!

      2 months ago
    • MerryMaid's Avatar
      MerryMaid

      yeah, I don't do that anymore. Those people that come to your house and never so much as say hi to you or thank you for hosting a dinner or family get together. We have a niece that's that way. It used to bother me but anymore I just treat her like she doesn't exist. I won't worry myself with whether or not someone talks to me, likes me, hates me, I just don't care anymore, I have bigger fish to fry.

      2 months ago
    • Bloodproblems' Avatar
      Bloodproblems

      Thanks for your input. I'm feeling much better about this dinner than I was.

      2 months ago
  • Bloodproblems' Avatar

    Bloodproblems asked a questionMultiple Myeloma

    Hello, I'm new here and looking to jiust talk with someone about all of this

    14 answers
    • LiveWithCancer's Avatar
      LiveWithCancer

      Things will probably calm down for you sooner than you would expect and life settles into a routine. Or, that's what happened with me. At the beginning, it was a whirlwind of tests and biopsies and new doctors that had to be seen. It wasn't long before there was a schedule and there was far less uncertainty about "what's next."

      Good luck! We've all been where you are now ... and I imagine that most all of us can relate to that feeling of uncertainty and fear and confusion. We're here for you.

      3 months ago
    • Bloodproblems' Avatar
      Bloodproblems

      Thank you again for your feedback and comments. It's good to have a place to come and talk to someone who gets it for what we are going through.

      3 months ago
    • meyati's Avatar
      meyati

      Hi, I just saw your question. You can talk to me anytime--about any thing--- What are you interested in---I bought jigsaw puzzles and worked them non-stop. That helped me focus. I did that for the first year. Find something that causes you to focus. I also like to make model airplanes.

      Good luck

      2 months ago
  • Bloodproblems' Avatar

    Bloodproblems asked a questionMultiple Myeloma

    My family and I wish all of the WhatNext family a happy thanksgiving!

    4 answers
    • JaneA's Avatar
      JaneA

      I'm a day late, but I hope that everyone had a nice Thanksgiving day and will have a wonderful weekend.

      3 months ago
    • andreacha's Avatar
      andreacha

      To All --- I too am late. I wish for everyone to have wonderful Holidays and, hopefully, have family and friends close. It's that time almost to reflect on all we have been through for this year and thank Him for his generosity. We are here and hope and pray that 2020 will be a better year for our entire Community.

      3 months ago
    • GregP_WN's Avatar
      GregP_WN

      Thank you from Donna and me, and the whole WhatNext team, we appreciate you being a part of our community.

      I'm two days late on this but still I hope everyone has a great extended weekend!

      3 months ago
  • Bloodproblems' Avatar

    Bloodproblems asked a questionMultiple Myeloma

    Just curious how available has your doctor or someone at your treatment facility been through Holidays?

    7 answers
    • BuckeyeShelby's Avatar
      BuckeyeShelby

      All medical providers have someone on-call. I had to call the on-call oncologist the Saturday after my first chemo treatment. He was a total moron. Had me convinced that the severe lower leg pain I was experiencing would be for the entire scope of my treatment. Didn't tell me it should start subsiding in a couple days. Told me to take advil. Yeah, my own oncologist had me on narcotics for a couple days after each subsequent chemo. But at least someone answered...

      3 months ago
    • Molly72's Avatar
      Molly72

      Had surgery for Angiosarcoma at U. of MI during the week before Xmas, A big mistake. Most of the "good" staff was off on vacation, no doubt on a beach in the Bahamas! What staff and services that were left was pitiful.
      Nurses were unhappy to be working, supplies---including toilet paper were missing, Xmas dinner was an ancient, hard orange & a cold piece of processed turkey. No happy volunteers spreading joy either.
      If you don't have to be in a hospital during some holiday,--- don't!!

      3 months ago
    • LiveWithCancer's Avatar
      LiveWithCancer

      I was sick one Thanksgiving. I called the emergency number and they told me to go to the ER. That was a terrible experience. Like Molly72 says, only the lowest people on the totem pole were still at the hospital and they were not at all interested in having to work.

      I vowed that I would have to be nearly dying before I would ever do that again. Fortunately, that's the only time I have been sick around the holidays.

      3 months ago
  • Bloodproblems' Avatar

    Bloodproblems asked a questionMultiple Myeloma

    Do you get anxious about leaving home and traveling to relative