• mtnraindancer's Avatar

    mtnraindancer asked a questionColorectal (Colon) Cancer

    Overcoming Fear

    11 answers
    • Jayne's Avatar
      Jayne

      I was very nervous leading up to my surgery for sure - the fear of the unknown. I ended up asking for meds to help calm me down, I think it was Xanax but it's been so long now. What can I say...I'm a wimp! But I still think it was the best thing for me - don't be afraid to ask for something if you need it!

      5 days ago
    • BoiseB's Avatar
      BoiseB

      It seems that I always have fear even to the point of panic attacks (I still have panic attacks from pre-cancer trauma). But my fears are more phobias than real fears. But cancer fear didn't raise its ugly head until after I had had clean scans for 4 years. I had a surgery site hernia my colon had pushed through the surgery site and was pushing against my lungs. My oncologist made an appointment with a lung specialist which I canceled because of a pending snowstorm. My oncologist called my PCP and both called me on a conference call and said that they had rescheduled the appointment and I was not to cancel period. The lung Dr. reviewed the CT-scan as said I had a hernia and scheduled me with a surgeon ASAP. Later that afternoon my PCP called to make sure I made the appointment. OK I should have been getting serious by now but that is not my style I did go to my appointment. The surgeon said he had reviewed my CT-scans and said he had scheduled surgery in 10 days. I thought hernia repair was no big deal just a little out-patient procedure. So I asked him can we put this off until next month. Well that changed this kindly reassuring Dr. into a Dr. Doom. He showed me the CT-scan pointed out my colon and my lung. He said my lung could collapse and my colon could twist and burst. He told me to move about as little as possible and he scheduled me for an EKG and X-rays. That put me into full panic mode. Now I am not one to take medication for anything but what is necessary to extend my life. But these panic attacks were like the symptoms of a collapsed lung or a twisted colon so I had to see my PCP. She was very helpful and showed me several anti-anxiety medications and we chose a very mild and old medication. It looks like your fear may be short term so I do suggest that you talk to your PCP about a short term medication for anxiety
      Will remember you in my prayers on the 19th

      5 days ago
    • Bug's Avatar
      Bug

      Jayne, you aren't a wimp! : ) It's okay to ask for help.

      5 days ago
  • mtnraindancer's Avatar

    mtnraindancer asked a questionColorectal (Colon) Cancer

    Still On The Fence With Mop-up Chemo

    9 answers
    • Kbaarch's Avatar
      Kbaarch

      Three months after my major colon and liver resection the ct scan showed unknown spots on the liver which worried oncologist and surgical team. Very disappointing. Three months later I had nonstop Xeloda with Avastin every two weeks for three months. It took a toll. Now two scans later I seem to be in remission with NED. Next scan in March. CEA was under 2. Blood tests good. Did the chemo help or hurt- who knows. Did the surgeon get it all? Time will tell. I trust my Oncologist who is always optimistic but focused on treatment with minimal disruption to quality of life.

      26 days ago
    • KB2013's Avatar
      KB2013

      GregP_WN, you are a marvel to behold, great strength, great personality, a genuine inspiration,

      grateful for you and the effort you put in to WhatNext, thank you and stay strong.

      14 days ago
    • KB2013's Avatar
      KB2013

      I don't like the phrase 'mop up chemo' because it is misleading.

      14 days ago
  • mtnraindancer's Avatar

    mtnraindancer asked a questionColorectal (Colon) Cancer

    Cravings and Guilt

    18 answers
    • meyati's Avatar
      meyati

      I was told to gain at least 20 lbs, 30 would be better. and to keep it on

      2 months ago
    • po18guy's Avatar
      po18guy

      @meyati The best way I've found to gain weight is to go on a diet and try to lose weight. Works every darned time!

      2 months ago
    • glam's Avatar
      glam

      When I was in treatment I used to eat whatever I wanted,,, I had lost too much weight so I needed to put anything I had tolerance and desire inside so I was able to continue treatment. When I finished chemo cycles and my tolerance to different foods improved I started choosing healthier foods and juices.... when years went by I relaxed a bit and I guess nowadays my formula is 80/20 ...

      2 months ago
  • mtnraindancer's Avatar

    mtnraindancer asked a questionColorectal (Colon) Cancer

    Chemo Dread..Mouth Soreness

    5 answers
    • myb's Avatar
      myb

      I tried the ice chips during oxali infusion with no luck. I had horrible mouth sores at 1st infusion, so that at my 2nd infusion, my Oncologist stopped the Leucovorin and bolis infusion. I then used to rinse with Biotene Dry Mouth wash like 5 times a day which helped to avoid mouth sores. To deal with the dread, I started taking Ativan the night before and morning of chemo. My husband used to drive me the 2 hours to chemo treatments in Philly as I could not do it.

      about 1 month ago
    • JaneA's Avatar
      JaneA

      I didn't have mouth sores - sorry that I can't help. But I have heard that ice chips during the infusion do help some people - also Magic Mouthwash. The best thing is to ask your oncologist or the chemo nurses for what they suggest. Best wishes - keep your faith - you're doing great.

      about 1 month ago
    • Jayne's Avatar
      Jayne

      I read somewhere (maybe this site?) that coconut oil swished and rinsed out helps, but I'd take the advice above since it sounds like Magic Mouthwash could help. Are you able to get any food down or is it just too painful? I know, who feels like eating, right?.....

      about 1 month ago
  • mtnraindancer's Avatar

    mtnraindancer asked a questionColorectal (Colon) Cancer

    Low Platelets

    5 answers
    • JaneA's Avatar
      JaneA (Best Answer!)

      lo15, Neulasta shots are to help with our neutrophil counts and don't help the platelet counts.

      about 1 month ago
    • lo15's Avatar
      lo15

      Nuelasta is used to build up your white blood cells. All I know is if I were she, I would ask about it. In SC we had the same issues as her, once in Massachusetts with Neuelasta, we have had great blood counts

      about 1 month ago
    • Jayne's Avatar
      Jayne

      I'll be thinking about you with the surgical app't tomorrow. It may sound scary but you can do it! One day at a time.....

      about 1 month ago
  • mtnraindancer's Avatar

    mtnraindancer asked a questionColorectal (Colon) Cancer

    Foods and Fagigue After Folfox Pump Disconnect

    5 answers
    • allier4's Avatar
      allier4

      I had two rounds of Folfox with the pump (2013 -10 sessions and 2017 - 12 sessions). I always planned for the day after my disconnect to be a down day - I would usually sleep. The tiredness can be cumulative. Definitely talk with your oncologist to get their input.

      about 1 month ago
    • JaneA's Avatar
      JaneA

      I always found that the third and fourth day of FOLFOX was the worst for fatigue and appetite.

      The effects of chemo are cumulative, and it does seems to get a little worse - which means we have to try harder to eat. My oncologist told me to eat "anything" that appealed to me. I confess that I ate warm brownies with vanilla ice cream, once the ice cream had melted on top of the brownie. Once you're done with treatment, you can eat healthy.

      Best wishes - do this one day at a time.

      about 1 month ago
    • IKickedIt's Avatar
      IKickedIt

      Extreme fatigue...yes! I would have about a 2-hour window after I was disconnected from the pump and then I would literally sleep for about 12-15 hours straight. I literally could not keep my eyes open. I would always plan to be disconnected Friday afternoon and then that was my "down" weekend with no plans. I worked a half-day Monday, and then was fine by Tuesday. I don't think that it had a cumulative effect like other problems. I think it was pretty consistent throughout the 12 cycles.

      I had severe first-bite jaw pain so that took away my appetite for about 4 or 5 days since it just wasn't worth the pain to even try to eat. And yes, my taste buds were messed up. My family couldn't believe that this chocoholic was spitting it out. I drank Ensure until I was able to eat. Or mushy foods, like scrambled eggs. It was a struggle since I wasn't interested in eating. But you know you have to stay hydrated and get the proteins somehow.

      Be grateful that the neuropathy resolves. Keep a very, very close watch on that since that can result in permanent damage. Most of the other problems resolve over time. My fatigue resolved fairly quickly after I finished treatments, although I know for others it lasted longer.

      I found that keeping a detailed journal throughout and documenting all the problems and things that exacerbated the issues (i.e. tired going into chemo, constipated going into chemo, drinking coffee or alcohol beforehand or not being dressed warmly enough, etc.) was very helpful. You might be able to prepare before or eliminate something from your routine or diet that might lessen the severity of the side effects.

      Good luck...this is doable!

      about 1 month ago
  • mtnraindancer's Avatar

    mtnraindancer asked a questionColorectal (Colon) Cancer

    Size of tumors with resection...

    7 answers
    • Kbaarch's Avatar
      Kbaarch

      I was diagnosed stage 4 colon cancer April 2015 Mets to liver (all 8 sections) and lymph nodes. Surgeon told me that I was incurable and inoperable- to go see an oncologist. Eight folfox treatments later plus gall bladder surgery I was again declared incurable and inoperable by another surgeon. Then 10 more Xeloda treatments. Finally - surgery in May 2017 with a different surgeon. Liver and colon resections- 8 or 9 hours worth. Liver resections, ablation etc.- +\_ 16 locations.

      Next scan had some questionable spots on liver. More Xeloda w/ Avastin this time- did not feel good. Stopped after 3 months. All subsequent scans have been clear, NED!
      Go to gym 3 times s week, walk dog 4 times a day. Still have neuropathy and a little chemo brain but feeling OK. Next scan 3/2019. I’ll be 69.

      about 1 month ago
    • LiveWithCancer's Avatar
      LiveWithCancer

      Thankfully, i haven't had any tumors metastasize ro my liver, but i have done a fair amount of reading. From what I understand, you can have fairly large amounts of your liver removed and it will regenerate. I have found that news comforting.

      What does your oncologist / surgeon say / recommend?

      about 1 month ago
    • Jayne's Avatar
      Jayne

      Hi, I did not, but my husband had mets to his liver. The docs told us at the time if there were less than a certain number (5 maybe) and if they were far enough apart, there would be a good shot at surgery. But his were all clustered together and far too many to operate. I would not take no for an answer (what a fool) and drug him around to different cancer centers until I found one that would try. They ended up just closing him back up. His major complication from that was a wound healing problem due to being on coumadin. Sound like you are in a much better position to fight this and win!

      about 1 month ago
  • mtnraindancer's Avatar

    mtnraindancer asked a questionColorectal (Colon) Cancer

    Mistletoe Therapy/Fermented Wheat Germ(Avemar/Metatrol)

    • po18guy's Avatar
      po18guy

      Beware, as the world is absolutely saturated with quacks and those without cancer who always seem to know what YOU should take! Demand to see survivors, not stories. Most such "holistic" methods fail clinical trials, so that fact should inform your decision. The world is also filled with this or that trend of the week. Where are the survivors? You would be far better off in a clinical trial of something which will advance medical science.

      Toxic? What about the cancer??? If your house is on fire, do you care if the fire department puts it out with polluted water?

      I am now on my 20th anti-cancer drug. I am alive, delighted to be anywhere and there has been no sign of either lymphoma for 3+ years. Besides, many natural/orgcanic/holistic substances may impair the effectiveness of science-based treatment and have the potential to decrease the effectiveness of your immune system - despite your blood numbers.

      When my life was on the line, I stuck with what was known to work. I know of not a single person using alternative/holistic/homeopathic regimens who has survived - including my dad, actor Steve McQueen or Apple CEO Steve Jobs. 'Nuff said.

      2 months ago
    • JustForToday's Avatar
      JustForToday

      I chose to ask the opinion of my oncologist before using alternatives. As an example, she suggested I stop using supplements that included antioxidants while receiving chemo. She said they could reduce the effectiveness of the chemo against the cancer. In another example, she looked at a tea that I was given as a present. She said she was aware of the tea and that there were no scientific studies about its effectiveness. However, she said she was fine with my using the tea after the chemo was complete. I felt if I was going to submit myself to chemo I should give it every chance to do its job. You might want to ask your oncologist to be sure your alternative therapies will not reduce the effectiveness of your chemotherapy.

      2 months ago
    • carm's Avatar
      carm

      @mtnraindancer,
      Hello, I'm an oncology nurse and I have patients abroad that I counsel and mistletoe extract (Iscador) is incorporated in their chemotherapy regimen. It is also available at Memorial Sloane Kettering cancer center. It is one of two widely used... The other is Ukrain. As a longtime oncology nurse I wish these were available here. Best of luck to you.

      2 months ago
  • mtnraindancer's Avatar

    mtnraindancer asked a questionColorectal (Colon) Cancer

    Any experience with L-Glutamine for Tingling/Neuropathy?

    • carm's Avatar
      carm

      @ntnraindancer,
      I can only respond as an oncology nurse who has been recommending L-glutamine for years. It is widely used overseas as well. When I first started recommending it, it was a tasteless powder but now you can buy the tablets at a Walmart. Best of luck if you want to try it. Another recommendation is Outback Pain Relief which is just 4 essential oils and available on Amazon.

      2 months ago
    • BruceB's Avatar
      BruceB

      My oncologist recommended this. I find it tastes TERRIBLE and it upsets my stomach, making me feel worse throughout the day, so much so that I stopped taking it. I felt better. The neuropathy did not get worse. Told the Dr and she was a little miffed --- basically said take it anyway; so I did. Now that they have stopped giving me Oxaliplatin because I'm moving to radiation, she said I don't have to take it any more. I'm glad.

      She also recommended vitamins B6 and B12, also to reduce neuropathy. You might ask your doc about those.

      2 months ago
  • mtnraindancer's Avatar

    mtnraindancer asked a questionColorectal (Colon) Cancer

    Is losing your grip strength and hand weakness normal with Folfox?

    5 answers
    • mtnraindancer's Avatar
      mtnraindancer

      I am on FOLFOX with Avastin...I am given IV steroids along with Emend for nausea and then two days of steroids orally when I come home with the pump. The tingling and "pins and needles" sensation were pretty strong this time. My grip was definitely affected but didn't last long. My mouth also seemed to draw inward a couple of times. Very strange sensations but from what I've read, others have had the same. I guess all of us are individual beings and respond differently. I started taking L-Glutamine powder and like everything else, you will find 100 studies to support it and another 100 that won't. It so helps to share with others who are in the trenches with you. Big hug to all!

      2 months ago
    • myb's Avatar
      myb

      I would report this to your oncologist. When I finished 12 rounds of folfox, i noticed I lost hand grip strength. During chemo I got hand cramps, so started taking alpha lipoic acid which helped. I got 24/7 hand and feet tingling 1 week after I finished the 12 rounds. During chemo it was just the reaction to cold items that had me tingling. I did the free Livestrong program after I finished chemo at a local YMCA and it helped to get my strength back and the balance issues from neuropathy that I got after chemo too. I suggest looking to see if one is near you but maybe wait till you are done chemo. (https://www.livestrong.org/what-we-do/program/livestrong-at-the-ymca)

      2 months ago
    • Skyemberr's Avatar
      Skyemberr

      In my case the tingling during FOLFOX indicated that it was acting as a neurotoxin in my system. I have permanent numbness in some areas and numbness in my left hand that occurs several times a day.
      Peripheral neuropathy can be an extremely serious sign of a complication, so you should be very very clear with your nurse and doctor that you have it so they know to assess you for having the neurotoxin complication, which can be fatal if it is allowed to progress long enough..

      2 months ago
  • mtnraindancer's Avatar

    mtnraindancer asked a questionColorectal (Colon) Cancer

    Chemo after liver resection?

    4 answers
    • JaneA's Avatar
      JaneA

      I had mop-up chemo after my rectal cancer surgery - APR surgery which is a complex surgery and results in a permanent colostomy. My pathology report showed six positive lymph nodes so I had six more cycles of FOLFOX with Avastin.

      My side effects were the same as before surgery - fatigue for a few days - and diarrhea on the 4th day after infusion.

      Best wishes - don't borrow trouble - whether you have mop up chemo is usually based on the pathology report. I had a lung met and nothing in my liver. But I wanted to LIVE so I pledged to myself that I would "endure the cure."

      2 months ago
    • Kbaarch's Avatar
      Kbaarch

      I had Avastin and Xeloda for three months, eight months after colon and liver resection. It was harder than I expected (fatigue) but nothing major.
      In remission from stage 4 colon cancer.

      2 months ago
    • Skyemberr's Avatar
      Skyemberr

      I had Xeloda chemo with 29 days of radiation, then I went straight to a major surgery where I had part of my colon removed, my vaginal wall removed and replaced with a transplanted muscle taken from my chest, an appendectomy, ileostomy and anastomosis. The surgery was very hard on my body and I almost died due to the complications and infections.

      I was told I had to start FOLFOX chemo within 8 weeks of the surgery. This was tough because the incision had burst at the bottom due to infection, and I was on a wound-vac for a month trying to get that incision to close up enough.

      I dragged my heels as much as I could because I felt really under the weather and was concerned about taking a hit from the chemo so soon after the major surgery. It is a very valid concern! I started my chemo at about 10 weeks from surgery.

      I had very big complications that landed me in the hospital in between each round of folfox, even with the dosage cut in half. We found out later that part of the reason why is because my body reacts to FOLFOX as if it is a neurotoxin. That actually isn't too typical, thankfully.

      You are correct to be very concerned about how your body could react. Complications can be very serious. Then you have people like my mom who has the same cancer that I do, and is on round 11 of FOLFOX with barely any complications. Everyone is different.

      Unfortunately, at this point FOLFOX and FOLFIRI are the two most effective tools the docs have to do the mop up chemo and give you a shot at getting rid of the cancer, or at least getting it under control. I wish I had been able to continue my FOLFOX for a few more rounds, or at a full dosage because if I had there is a chance I would not be metastatic now.

      It was worth doing it even though it gave me complications and didn't end up curing me. It has still prolonged my life enough to give me a chance to wait for the study or treatment that will save me. Hopefully in your case at the very least, it will get you to NED.

      Please keep coming back in if you have questions or need support. We want to help you fight.

      2 months ago
  • mtnraindancer's Avatar

    mtnraindancer asked a questionColorectal (Colon) Cancer

    Advice For First Treatment

    7 answers
    • knightwingfire's Avatar
      knightwingfire

      SKYMEMBER MENTIONED PINS AND NEEDLES. Yes a topic I am now Familiar with.
      I have for years been taking Gabapentin a medication that is often given for Peripheral Neuropathy. Which is what he is describing . I have taken the highest dose allowed. And I started feeling this dreaded Problem. IF your on Gabapentin or other Drug of this type that will control seizures or the Flow of Pain Chemistry within Nerves ASK your doctor. You may have to omit this from your overall therapy. As it DELAYS the ONSET of these symptoms and Drives the Neuropathy to such an extent it cannot be helped by MORE MEDICATIONS . Ive tried some topical ointments that I and MY Dr. have developed and had compounded to some help . This is a message that is meant to be a WATCH OUT FOR re the medication . Peripheral Neuropathy is NOT a welcome Side effect and You have to stop Chemo immediately. ABOVE ALL be on the alert for the First PINN Strike I Believe he is On board with me in saying SPEAK UP ASAP. Ive had mine for a year now which means it has worsened sine I stopped chemo. I first showed signs at month 8 of treatments. OF 12 Planned. I still have a 2 year NO cancer Found report. Despite the early stoppage but the Problem has not been treatable for the past 18 months since surgery. the Gabapentin was covering up the Actual PINS and NEEDLES but not the spasms they also produced DURING treatment "8" . For me the 12 treatments would have been overkill. Despite the panic that set in when they woke me from my pleasant I thought sleep but scary for them watching my Spasm more than a foot from the bed I requested. These ARE NOT IN MOST CASES AN ISSUE BUT IN SOME PLEASE DO NOT GET SCARED BY my graphic descriptions . I expect them to begin declining form this point on. I m noting some decline and the p[eaks are despite very bad for me getting lower. than a month ago .Its just be patient . and know this will GO away unlike Diabetic Neuropathies .

      4 months ago
    • alivenwell's Avatar
      alivenwell

      You will feel exhausted. For me, I had extreme sensitivity to any light. I remember sitting in the dark. But, I also had glaucoma prior to treatment. Have eye pressure checked. My pressure went very high.
      Other than that, a nurse advised me to eat white foods prior to chemo. And combat nausea and the metallic taste with mints and ginger. My diet consisted of oatmeal, white rice, white bread, white half inch thick cookies, cream of wheat....pretty much anything mild. I added dark chocolate. For neuropathy, post treatment should include almonds, dark leafy greens, vitamin B6, vitamin D3.
      I exercised between treatments at a private gym. Get a juicer to get micronutrients after treatment. It takes patience and time. It took me several months to feel normal. Wear Ove gloves when going into the refrigerator or near anything hot.

      4 months ago
    • Skyemberr's Avatar
      Skyemberr

      @knightwingfire You are describing oxaliplatin neurotoxicity! Yes it is very dangerous and builds up in series of treatments over time. it can kill you. I am happy you are here with us today. It is somewhat rare though, so hopefully not something the person who has asked this question will get, but they need to stay on the lookout for those pins as you said!
      You are lucky you reported it and they caught it! I thought it was one more thing to be tolerated and they had to stop me at round 5 with only leucovorin and 5fu in the cocktail for the next round. Then I got c.diff colitis and nearly died so the oncologist stopped, stating that with the presurgery pill chemo and radiation they gave me I had met the standard and he was worried complications were going to get me.

      4 months ago
  • mtnraindancer's Avatar

    mtnraindancer asked a questionColorectal (Colon) Cancer

    Bowel Cancer

    7 answers
    • LiveWithCancer's Avatar
      LiveWithCancer

      I am so sorry to read this update, @mtnraindancer. I have a different cancer so can't offer any advice, but wanted to say (1) how sorry I am that you lost your husband and (2) that you might now be facing your own journey with cancer.

      Please know that we're all here for you. You are in my prayers.

      5 months ago
    • Jayne's Avatar
      Jayne

      Hi, I too lost my husband to rectal cancer and then was diagnosed with it myself. I did radiation, then chemo, then surgery, then more chemo. I had 4 reocurrences to my lungs at different times. After 10 years of this, I was declared No Evidence of Disease (NED), the holy grail of words to cancer patients, in 2017. I know how distraught you must feel and wish I had a magic answer, but it's a really tough situation (or as my brother says, a sh*t sandwich). In retrospect, I wish I had gone for some counseling - they should offer that right at your facility so it's easy and convenient. Sometimes we just need more support than we can muster on our own, especially with a double whammy like this. I compartmentalized things just to survive but boy, does it come back and haunt me at times! As others have said, hope is never lost....we just need some help finding it. Know that there are many caring and loving folks on this site, along with professionals such as Carm. Reach out and let us be your village who can help you get through this because you can! As my favorite saying goes: "in the midst of winter, i found there was, within me, an invincible summer." Also, you might try to connect with nature in some way - walking, hiking, sitting on a beach, it is a great healer and always gave me strength when I felt I had none. - J

      5 months ago
    • BeckyTice's Avatar
      BeckyTice

      Well, I'm sorry to hear you are joining our numbers. You are starting out ahead of most of us.... most of us didn't know a doctor they could trust. You've been working with a care team while caring with your husband... so that part of the puzzle is in place. Lucky you! AND you already have this website. A lot of us stumbled on to this site after being laid out by bad news... you are so lucky. Hey look... I know the news sucks... but you have the rest of your life to deal with sucky stuff.... today... count the couple things in you day that say you are lucky.... you have good team members and good information.... and we can't smack you if you cuss!

      4 months ago
  • mtnraindancer's Avatar

    mtnraindancer asked a questionColorectal (Colon) Cancer

    Simultaneous liver and colon resection

    9 answers
    • biga17133's Avatar
      biga17133

      Just wanted to say Praise GOD and I hope all goes well with this doctor and you get to be a NED soon ,,Enjoy being closer to your love ones,,Praying for you,,marven

      4 months ago
    • BoiseB's Avatar
      BoiseB

      I haven't had experiance with two resections in one operation but I have had experiance with prayer. I will join the others here in prayer

      4 months ago
    • catlillie's Avatar
      catlillie

      I was diagnosed in 2014 with stage 4 colo/rectal cancer with mets to liver and lymph nodes. This talented surgeon at the Alaska Native Medical Center yarded it all out at once. He managed to prevent my having a colostomy despite the location. Then it was on to Xeloda during radiation and Oxiplatin infusions. Had a recurrence in my lung which, once again, was removed. They had me on Xeloda while Irinotican and Avastan were infused. So far all is well.. and I hope the same for you.

      4 months ago