Navigating the chemotherapy window between treatments: Your tips

Hi,
I am not sure that "one size fits all" regarding how to deal with chemo. Everyone is different. I recently finished 12 rounds of Folferinox, and my experience has been this: I eat several small portion meals a day. Try to keep a healthy diet and not challenge the digestive system. I try to exercise on days I feel good. That can be difficult when dealing with consistent fatigue. I take melatonin to help with sleep. If the day before had little activity, I find that I sleep poorly and need naps the next day. Trying to be as active as I can, when I can, also takes my mind off of things I cannot control. Fatigue and neuropathy are still every day conditions that I must deal with. I am waiting for scan results to see if chemo helped. I hope my experience provides some answers. Good luck and let me know if you have any questions.

My husband had 12 treatments. After the first day of each treatment, he had trouble moving his bowels-even with the stool softeners the oncologist gave him. Someone who had the same experience told us that her doctor told her to drink warmed prune juice and then hot, black coffee. A surgeon recommended Senokot Extra Strength natural laxative. The Amish use it. This regimen helped him more than anything, so it became the thing he did after each 1st day of treatment. He had no problems after that. We were also given a recipe for a mouth rinse that prevented mouth sores that people sometimes develop with chemo. Let me know if you need the recipe. You rinse your mouth with it after each meal. It’s easy to make, and he never got the dreaded sores. He took melatonin to help with sleep in the evenings. He found that during the days when he was not exhausted (usually after the 1st week of each treatment), he felt better when he used the elliptical machine. He found he could do that better than just walking due to the neuropathy in his feet and legs. He could use the handles for stability. To take his mind off of it all, he read a lot of books from the library during the day and watched a lot of Netflix in the evening. Visitors helped, although you need to be careful with germs. I hope you can sit outdoors with visitors. All the best to you. P.S. We have read that putting cold wraps on your hands and feet during treatment helps prevent or slow neuropathy. We didn’t know about that then and were not told to do so.

I worked with a naturopathic doctor (holistic health professional) and an acupuncturist and had one to two time per week acupuncture treatments during my entire course of Folfirinox chemotherapy.
I had virtually no neuropathy, minimal fatigue,very little nausea, a few mouth sores, some diarrhea, but in general very few side effects. The doctor prescribed certain supplements that would not conflict with the chemotherapy and which I cleared with my oncologist, and acupuncture was recommended by the oncological team also and was paid for by the insurance company when received from the hospital wellness staff.

I am also looking for an Acupuncturist to help with my husbands severe side effects during chemo. Any NJ recommendations would be greatly appreciated.

I posted the following on another thread and copied it here. I just finished my third chemo treatment Monday (5/22/23). What helped me most was reducing the chemo dosage for modified Folfirinox. My first round was 80 percent of the standard dose; the MD lowered it from 100 percent to 80 percent because I'm significantly older than the original test subjects for this regimen. Even at 80 percent, the first round was awful–nausea and vomiting for a week and a half, coupled with 6 days of diarrhea. For rounds two and three, I've received a dosage that's 60 percent of standard. This has really helped. The side effects were much more mild. I am not taking any supplements or seeing an acupuncturist; I'm working only with the meds prescribed by the oncologist and the palliative care MD. Re sleep, I occasionally take a Benadryl before I go to bed.

Other thoughts, FWIW: I have been eating/drinking things that sound good. As a result, my diet has switched from a very veg-based, balanced diet to one focused on starches and sweets. Calories are my goal–the heck with nutrition. We've acquired some really out-of-character foods in this house (gelatin, pudding, Pop-Tarts!). Some things that have worked for me are baked potatoes, scrambled eggs, rice, cream sauces, certain frozen dinners, pancakes with syrup, cookies, ice cream, sorbet, lemonade (I don't have much cold neuropathy yet). Once in a while, I have a fast-food craving, and I do indulge it. I eat much smaller quantities and I eat more often, maybe every 2-3 hours. I tried PowerAde for electrolytes but it didn't taste good. I'm pretty much avoiding meat but not completely. I can tell that my water intake has gone up in recent days, which is good. I got severely dehydrated after the first round.

Re meds, I was told to alternate Zofran and Compazine so I had one every four hours for at least three days. My chemo is on Monday, and I get all the nausea meds there, so I begin the Zofran/Compazine switcheroo on Wednesday a.m. I was also given dexamethasone (steroid) to take along with those meds to help fight nausea. Same approach with anti-diarrheal meds; I alternate Imodium and Lomotil every 3-4 hours.

I have had some chills but no fever. I stay wrapped up most of the time. It's been hitting 80 degrees here and I'm wearing a long-sleeved flannel shirt and long pants. Re neuropathy, my oncologist emphatically told me not to try icing during the oxaliplatin dose, so I didn't. After three rounds, I have occasional tingling in my fingertips and a little in my tongue and throat.

Sorry that rambles a bit. Hope there's something helpful in there for you!

Thank you for all the information, much appreciated. We hope things go smoothly for your remaking treatments.