Recommendations for recovery after FOLFOX: What helped you?

@susanafc Thanks. I am sorry to be a pest but...could you share with me how old you were when you began FOLFOX and what stage you had? I am 76 and have "low" stage3.
Thanks.
Jo

No problem ... I was 68 - just had my birthday! - and have stage 3b. Good luck. I would never put chemo on my bucket list but since I love to travel, I described it as another journey which wasn't much fun!

@susanafc Thanks, Susan. I thought I had 3a but my oncologist told me it is 3b. I appreciate your support.

I'm 72, Stage 4 with sigmoid tumor and liver mets. I just completed round #26 of Folfox (stopped oxliplatin after #9). I get my infusion(3 hours) and have 5FU on a pump for 48 hours. My side effects, as most folks realize, are sort of like options for a new car. Sometimes they come in a package deal but you may have some "pick and choose". Not two are exactly the same.

My side effects are mainly persistent, low grade chemo flu (drippy nose, inflamed nasal membranes and mild head congestion), occasional sweats/chills with no fever, neuropathy in the feet (better since stopping oxliplatin), never had nausea in my life and no hair loss. And then there is, drum roll,.......diarrhea preceded by gas, bloating and cramps. It can sometimes be really not fun and can come on anytime during the infusion cycle, though rarely in the first 72 hours but usually on the "recovery" week. Immodium and oxycodone do the best, for me, to settle down the events.

One thing, in my case, that does complicate matters is I was diagnosed with EPI (exocrine pancreatic insufficiency) during which they found the cancer and referred me to the cancer center. EPI means my pancreas doesn't produce enough digestive enzymes for the large intestine to properly digest and absorb food. I take 30-40 enzyme replacement capsules, always with food, daily.

So, I know that diet and the EPI are ancillary players in the diarrhea. I constantly adjust my diet, trying to get calories in with out upsetting Bubba (that's the name for my tumor. Bubba a bad man, but Folfox has his number. He and the liver tumors (the Bubbettes) are shrinking significantly. I may be able to have surgery to say "bye-bye to Bubba) by the first of the year.

This has been along way of saying recovery, as with every thing in chemo, is highly dependent on many things. For me it's attitude - to me, this is like floating down a wild river without a boat. There is calm water and then some Class 1/2/3 rapids - these are irritating, but unlikely to do much harm. Then comes Class 4 that will bruise and batter you. And the Class 5 can cause me to have the worst day of my life. But I know I will pass through and there will be calmer water ahead. I choose, during the Class 5s to allow the river to flow and me to just ride it out, doing whatever it takes, to get through. I hope my experience, in some small part, helps your dad navigate his river. In any case I wish him the best in his journey.🙏

@colleenyoung I had my first Folfox on Oct 5. I had a lot of pressure in my sinuses from the beginning of treatment. I mentioned it to the nurse she didn’t really offer a solution. Had the battery removed on the 7th. I didn’t feel too bad but I’m not able to sleep well. Yesterday the pressure was intense called the clinic they said I could take Tylenol. I looked it up online and found the solution saline nasal spray and cool mist vaporizer. Last night I experienced diarrhea and vomiting no sleep. Waiting for a call back from clinic.
I see the oncologist on Monday.

My oncologist said to use Imodium to get diarrhea under control. I asked about the limit of 4 in the directions. He told me to use more. Once in a while I had to use 7 or 8 in a day. It did control the diarrhea.
He also prescribed 3 different anti- nausea/vomiting drugs and how to use them all. He had more if these didn't work. Ask for more/different ones. I had to learn to advocate for myself, loudly at times.
Good luck!

I am amazed at the number of patients dealing and living with debilitating side affects from treatment.

@115 I saw my oncologist yesterday and she prescribed trazadone so I can sleep and something for nerve pain as having to have a bowel movement is painful. I’m still healing from radiation. I have 2 anti nausea meds. Imodium does help a lot. The day I get disconnected from the pump they’ll give me fluids so I feel more confident that the next treatment I’ll know what to do. Thanks to everyone who shares their experiences 🙏🏼