Refusing folfox treatment after chemoradiation

Hi! Folfox is hard to handle. I was allergic to the oxaliplatin and only had 2 rounds of that and continued on with just the 5-FU. I had T3N2b colon. It was in my right side which makes a difference surprisingly. I was on treatment the 12 rounds, and 8 months later it showed up in my girly area. Sigh so I am back on treatment with folfiri instead and have been on that since Nov of 24. Had radiation. Its so far staying at bay. I am currently on a break to see what happens. But the Folfiri is wayyyyy easier to handle if you don’t care about your hair. What were your concerns with the folfox?

Thank you for sharing.
I am just debating, I wonder if I really need it. I had chemo radiation treatment for 5 weeks. I am on a break and the next step is Folfox if I decide to go for it. The chemo is supposed to kill the cancer cell who may have escaped yet it is attacking the good cells and weakening the immune system.
I have been so amazingly lucky in my life to never have been to doctors except when I was a kid. My body is my temple and has been very good to me up to my 64th year.
I am curious about other people experiences. It would be very valuable to me to hear about people stories. Thank you so much. Hope you will be fine.

@girafe I finished 6 wks of radiation and Xeludo on June 16th. I had surgery to remove a small part of a mass that was left over from a colonoscopy that couldn’t be removed. I was told most people don’t have surgery first before starting treatment so it was difficult in the end. I’m still recovering but am much better now. Folfox was suggested as a 4 month follow up to the treatment I had . I really don’t want it. I see my oncologist on Tuesday to review the CT scan and MRI and I’m hoping they’re clear.

I'm stage 3A. I had surgery to remove the tumor in my hepatic flexure. I started Folfox about a month after surgery. I did 2 of 6-12 rounds and decided to quit because it was causing severe stomach pain and neurological symptoms in my arms and legs. I'm now 70 and maybe cancer will be my cause of death but in the meantime, I'm back living life to the fullest extent possible instead of being medically tortured. I'm currently one year ned.

@115
Thank you. Please let us know what the oncologist says
Hope for the best for you.
Thank you so much.

I was 65 years old when I was diagnosed with stage 3B mid rectum cancer.I had concurrent 5FU and radiation for 28 days.After 10 weeks I underwent surgery.A descending colon J pouch was created after removing the sigmoid and rectum and it was attached to the anal canal. In pathology ,the lymph nodes were free of cancer. But the medical oncologist wanted me to take a three drug ,6 courses of chemo for 6 months.His arguement was the nodes were positive in PET scan.As the tumour was in the anterior wall of rectum,uterus and thee fourths of the vagina was also removed,so that the microscopic infiltration is not missed. Sigmoid was removed as it has a common lymphatic drainage.The oncologist said the chemo was meant for increasing the 5 year survival rate.Is it a 100% survival.No ,about 20% risk will remain.So I weighed all the options and decided when there is a 20 % risk why sacrifice my quality of life.Any day chemo or radiation do not destroy the cancer stem cells.So No chemo was my decision.It is 8 years now.Though post surgery challenges like frequency and fragmentation is there and post radiation pain in the anal area is there,I am having a reasonably good quality of life.If those small hindrances are not there,I might forget to be grateful.

All the best for you to decide on what you want in life,quality or quantity?

I did 8 folfox treatments, stopped the oxiplatin at the 8 treatment as I had a reaction during the 7th treatment.
Then completed 29 chemo radiation treatments.
Followed with surgery.
Cancer free currently!
Neuropathy in feet has been a consequential side effect though but managed.

@leeb123
Thank you so much. Has your immune system recovered? How long ago did you have treatment ?

@premi
Thank you so much. For me the oncologist want to do the Folfox chemo before the surgery. Apparently it may avoid the surgery, yet not one hundred % sure.
So glad you are well after 8 years.

@girafe treatments ended in the first week of January, then surgery end of March.
The wait was due to radiation still working and being compromised.
I went back to work May 15.
Overall im ok, I still get fatigue but try to push through those moments.
Focused on what I can versus can't.
It's a journey for sure!
Hope you're doing well.