What other therapies are recommended with folfiri chemo - Stage 4 CRC

mogwa823: I saw your post. I just don't have any advice for you. I've been getting chemo with the 48 hour pump every 2 weeks for over a year now. I also have an HAI pump implanted in me which shoots chemo directly into my liver. It's no fun. I also had chronic diarrhea, but mine was from gall bladder surgery, not chemo. I take something called cholestryamine (sp?) which removes excess bile from my digestive tract and slows down the diarrhea. I doubt that would help you bc your diarrhea is due to chemo drugs. But I do understand how awful that chronic diarrhea is. I dealt with it for a few months after my surgery before I got the cholestryamine. My weight kept dropping and I was unbelievably weak and tired from it. You can't go anywhere or do anything. You have no energy and so you can't get any exercise. I couldn't recover from my surgery at all. (Colon resection, gall badder removal, and HAI pump implantation). I wish I had some idea that could help you. Well, there is one thing that helped me: When I cut gluten out of my diet my diarrhea slows down precipitously. I'm more of a gluten avoider than an absolute no gluten person. But when I have gotten off track and had quite a but of gluten, the diarrhea gets much worse and I have to take more doses of the cholestyramine than I had been taking previously. (I hate the stuff, so I try to take it as little as possible.) I have also noticed that I get acid reflux sometimes after I've eaten gluten. So maybe there's a chance that cutting out gluten would help you. It might be worth a shot...Many Drs pooh pooh the gluten intolerance thing, but lots of them believe it's a thing too. Good luck! I hope you find a solution. I know it's hard to go through treatment when the treatment is taking away your quality of life in big chunks. I just don't see any other way. I want to live!!! Fingers crossed that you find something that helps....

Been on chemo w/figuring for 10 weeks. After infusion I wear a computerized pump for 48 hours. I need to find something that will help me get back on my feet after the pump is removed. Suffer from chronic diarrhea, fatigue and heartburn. I’ve lost 20 pounds since this last March and am having difficulty maintaining my weight. By the time I do feel functional I have 4-5 days before my next infusion. The treatment seems to be working. My markers have fallen from 20.2 to 4.4 over the 5 sessions of chemo I’ve had. Hard to believe I will be doing this for the rest of my life.

mogwa823: I saw your post. I just don't have any advice for you. I've been getting chemo with the 48 hour pump every 2 weeks for over a year now. I also have an HAI pump implanted in me which shoots chemo directly into my liver. It's no fun. I also had chronic diarrhea, but mine was from gall bladder surgery, not chemo. I take something called cholestryamine (sp?) which removes excess bile from my digestive tract and slows down the diarrhea. I doubt that would help you bc your diarrhea is due to chemo drugs. But I do understand how awful that chronic diarrhea is. I dealt with it for a few months after my surgery before I got the cholestryamine. My weight kept dropping and I was unbelievably weak and tired from it. You can't go anywhere or do anything. You have no energy and so you can't get any exercise. I couldn't recover from my surgery at all. (Colon resection, gall badder removal, and HAI pump implantation). I wish I had some idea that could help you. Well, there is one thing that helped me: When I cut gluten out of my diet my diarrhea slows down precipitously. I'm more of a gluten avoider than an absolute no gluten person. But when I have gotten off track and had quite a but of gluten, the diarrhea gets much worse and I have to take more doses of the cholestyramine than I had been taking previously. (I hate the stuff, so I try to take it as little as possible.) I have also noticed that I get acid reflux sometimes after I've eaten gluten. So maybe there's a chance that cutting out gluten would help you. It might be worth a shot...Many Drs pooh pooh the gluten intolerance thing, but lots of them believe it's a thing too. Good luck! I hope you find a solution. I know it's hard to go through treatment when the treatment is taking away your quality of life in big chunks. I just don't see any other way. I want to live!!! Fingers crossed that you find something that helps....

Is there a support group at the hospital? Maybe talk with them and get some more help. I did have chemo every 2 weeks and carried a pump home for 48 hours when I was getting my chemo in 2019. I remember it was such a pain in the ---. My chemo was Folfox. But I had Chemo for what seemed like about 3 or 4 months if I remember. I still am experiencing the peripheral neuropathy in my fingers but not as bad as it was during the chemo. I also have peripheral neuropathy in my feet and legs although I had that before due to my diabetes but it has gotten worse. I guess I can live with this because I am living without the rectal Cancer I had. Then I had radiation therapy for a month. Check with the hospital though. They might be able to help.

I feel your boyfriends pain. I’m living on Imodium pills and don’t want to leave the house most days.
I’m suppose to have my next infusion this coming Tuesday but I’m going to ask for a break. I want to feel human again.
The Folfiri+bev has made the skin on my fingertips crack and it feels like my tongue has been shredded by razor blades. My oncologist prescribed Magic Mouthwash for me but I haven’t been able to get it filled because there is a shortage of lidocaine.
I’m am so looking forward to not having chemo this coming week. Also going to ask my oncologist about chemo every 3rd week. My makers have gone from 21.4 down to single digits. Hoping the lymph nodes show regression in my next scan. By the way I was cancer free for 8 years then diagnosed with advanced colo/rectal cancer in May. Best of luck to you both!

I can't imagine all the things you've went through and going through still. Your mental strength is inspiring!! I will also try the gluten-avoiding diet for my boyfriend. He also gets acid reflux these days, but I wasn't sure where that's from since we had to stop chemo for the surgery and recovery. Thank you for sharing! Keep fighting! Let's all come out winners!

Thanks Iris0106. Gluten free isn't as hard as it sounds. Trader Joes has some good (in the fridge section) gluten free fettuccine. The gluten free breads are not great and I think you always have to toast them. But as long as you put something on them (jam, cheese, peanut butter), they are passable. You can bake stuff with gluten free substitute flours and mostly it turns out OK. But I find that baked goods made with gluten free flour are only good for 2 or 3 days. So I try to make things that don't require any flour naturally. For instance, I eat macaroons for my cookies and I found a recipe for corn bread that is made with only cornmeal, no flour. I hope it helps. I know how awful it is to feel like you don't dare leave your house. Good luck and thanks for your kind words.

We can do macaroons and corn bread! Thank you so much for sharing. I'll also share if I come across anything that my boyfriend has positive reaction to =)