• 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 days 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.

      1 day 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.

      1 day 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.

      4 days ago
  • mtnraindancer's Avatar

    mtnraindancer asked a questionColorectal (Colon) Cancer

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

    4 answers
    • po18guy's Avatar
      po18guy

      Is it just FOLFOX, or are steroids involved? Prednisone, for one, causes muscle wasting. As to grip strength, some drugs may have that effect, either througfh muscle decrease or neuropathy. I was in a trial of Arzerra (Ofatumumab) and grip strength was one of the follow-up tests. I would call and ask doctor/nurse about it and peruse the various drug makers' websites.

      5 days ago
    • 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!

      5 days 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)

      5 days 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 .

      about 1 month 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.

      about 1 month 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.

      about 1 month 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.

      3 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

      3 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!

      about 1 month 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

      2 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

      2 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.

      2 months ago