Recommendations for recovery after FOLFOX: What helped you?

Posted by wku @wku, Aug 9 2:09pm

After two years on folfiri, and one on capecitabin, my cea numbers started to climb into the 30’s. I’ve now switched to folfox and after three treatments my numbers have finally started to drop. 🤞. I thought Folfiri was bad but the Folfox is pretty bad too. I get infused for three days but it takes 2-3 more before I start to feel human again. Is there some trick to shortening the recovery time?

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wku | @wku | Sep 13 10:57pm

In reply to @115 "@colleenyoung Hi, I’m having a port put in on Sept 28 and waiting on Signatera blood..." + (show)

@115 You will be so glad that you’ve gotten the port. I see people that week after week come in and have to take it in their arm. I don’t know how they do it.

115 | @115 | Sep 17 7:58am

In reply to @115 "@colleenyoung Hi, I’m having a port put in on Sept 28 and waiting on Signatera blood..." + (show)

@115 The Signatera test shows no cancer. I’m all set to start Folfox on October 5. Thank you everyone who shares their experiences here.

jojo1966 | @jojo1966 | Sep 21 11:39am

I have now had 2 FOLFOX cycles. The third day of each has knocked me to the curb. Nausea, intense fatigue. Yesterday they pumped me with IV, steroids, wbc booster, and zofran when they unhooked the pump. Not sure if I can do this 11 more times.

susanafc | @susanafc | Sep 22 8:14am

I had the same pattern. Days 3 and 4 were bad. My oncologist promised me he had enough drugs to keep me from being nauseous. I had 3 different prescriptions and used them as needed. Ask for more and different ones. I also watched a lot of junk TV and took naps on those days. Hang in there. Hugs!

jojo1966 | @jojo1966 | Sep 22 10:44am

In reply to @susanafc "I had the same pattern. Days 3 and 4 were bad. My oncologist promised me he..." + (show)

@susanafc Thank you. How many cycles have you had?

susanafc | @susanafc | Sep 23 6:40am

In reply to @jojo1966 "@susanafc Thank you. How many cycles have you had?" + (show)

@jojo1966 I had 8 cycles. Then stopped the oxaliplatin due to neuropathy. Finished the last 4 cycles of everything else. This was 4 years ago and I'm am happily cancer free so far.
I did end up in the hospital 2 times so make sure you advocate for yourself if you feel "worse" than the usual pattern. I kept a daily record of how I felt.

jojo1966 | @jojo1966 | Sep 23 11:31am

In reply to @susanafc "@jojo1966 I had 8 cycles. Then stopped the oxaliplatin due to neuropathy. Finished the last 4..." + (show)

@susanafc Hi Susan, What symptoms led you to hospitalization?
I am so glad to know you are cancer-free! Did you continue with the pump part after the first 8 cycles? Today is Day 6 and I feel pretty good and I am also keeping a daily record to give me hope on the rough days.
Please know that I appreciate your response very much.
With every good wish, Jo

Colleen Young, Connect Director | @colleenyoung | Sep 23 7:28pm

In reply to @wku "@colleenyoung I had a PET/MRI this week. It indicates that the activity in the lymph nodes..." + (show)

@wku, how did the next Folfox treatment go? Any word on the trial?

wku | @wku | Sep 23 8:08pm

Actually turns out there are two trials. Met with nurse coordinators today. Signed consents for them to sample some tumor cells that they had previously extracted. Apparently there are some narrow genetic requirements which I may not meet.

susanafc | @susanafc | Sep 24 7:59am

In reply to @jojo1966 "@susanafc Hi Susan, What symptoms led you to hospitalization? I am so glad to know you..." + (show)

@jojo1966 I was nauseous on a day I should have felt good, threw up, and was very weak. I ended up with sepsis and in ICU. Had to have a transfusion and loss of drugs.
I used the pump the whole time.
By day 6 I usually felt pretty good, just like you are. Then I felt good until it all started over. Good luck!