I'm not a doctor. I'm just giving my thoughts for what they are worth.

If it was me and I had had a 2nd serious reaction to the oxaliplatin, like your husband has had, I think i would choose not to have the oxaliplatin again.

I believe if you take away the oxaliplatin, that it just makes sense if you take away 1/3 of your army (one of the 3 drugs in FULFIRINOX) to fight the battle, you are reducing your chances of winning the battle.

You and your husband are the ones paying for the treatment. It should be your husband's decision. We have to balance quality of life and attacking the cancer.
My experience: I'm stage 2b (not sure if still am), with most common type of pan cancer. Diagnosed 6/7/23. I now have encasement around my duodenal artery and main hepatic artery (did not have this at beginning).
I had 7 treatments with FULFIRINOX (surgery planned for after chemo).
The last 5 of those treatments were only 50% oxaliplatin, because of jaw pain.
Before my 8th treatment, I told my oncologist I couldn't do the oxali unless it was reduced (because of jaw pain a week of tingling in my left toes)-she didn't think it would kill any cancer cells if we reduced it, and thought I would still have the side effects- I told her if she couldn't cut it in half, I wouldn't take it-so she didn't give it to me.
When my surgeon found out I didn't take the oxali with the 8th treatment, she was very disappointed. She thought any amount of oxali would have helped me. She said there have been no studies done on taking FULFIRINOX without the oxali, (When she said this, I think she was referring to my situation of being 2b stage) so her and the oncologist discussed it and they thought it best not to stay on the FULFIRINOX without the oxali (which I had been hoping they would let me do).
They switched me to gemzar/abraxane, so I took gemzar/abraxane for my 9th chemo, for the first time yesterday, and will continue to have it every two weeks until I've had 12 chemo treatments total. (which means 3 more gemzar/abraxane treatments and then planned surgery, unless something else comes up)
My 9th chemo was delayed a week, because insurance needed more time to approve the new chemo plan.
I get my CA19 tested every 2 weeks before each chemo. Since I stopped the oxali, my CA19 had gone up 5 points- I believe for me, it is because I stopped the oxali.
I have a friend who went through chemo for her pan cancer years ago. She is now taking an anti-seizure pill, twice a day, for the neuropathy in her hands and feet. I don't want to have to do that in the future-that is the reason I said no to any more oxaliplatin. I believe for me, stopping the oxaliplatin means I am not fighting the cancer as well as I could with the oxali, but I made the decision to stop it because my quality of life is more important to me, and I'm not a person to take chances. I don't know if I made the right choice, but it's a choice I felt was right at the time, and for now I'm okay with my choice. I'm doing the best I can with my decision making-all I can do is my best.
You are doing the right thing to ask other's veiwpoints.

Jump to this post