Bowel cancer treatment and side effects

Sam61

Folfox, just 5FU or take my chances?

So after my APR, the histology showed 3 out of 18 lymph nodes affected. The oncologist says there’s a 65% chance I’m already cured and don’t need any further treatment but is offering mop up chemo to increase chances by around another 20%.

He’s given me the choice of 6 cycles of Folfox, 12 cycles of just the 5FU or I can decide not to have any further chemo.

I know what the sensible option is but having struggled so much with side effects and panic attacks during my chemo radiation, I don’t know whether I’m brave enough to do it. And many people seem to have such bad experiences of Oxyplatin.

Does anyone have more ‘positive’ or doable experiences of Folfox? Is there anything you can do to reduce the risks of permanent neuropathy?

DianeS

Hi @Sam61, personally I would do all I can to ensure my chances were as high as possible. I had 12 cycles of Folfox, and I was so scared in the beginning, but I told myself this was going to be my way of helping my body get rid of any stray cells. Like you I worried about the possibility of long term neuropathy. I’m 4 years post treatment, and so pleased I gave it my best shot. Everyone reacts differently to any type of medication, and most people don’t have all the side effects. There are ways of helping reduce the side effects, and you are monitored regarding neuropathy. I had reflexology and I’m sure this helped. I hope you come to a decision, and it’s what you want (which is very important). Best of luck to you, Diane :x::x::x::x:

ch7091

I do have some nerve damage now, but that only appeared aftwr chemo. I generally found FOLFOX very doable, it didn't really stop us doing anything as a family. It was scary at first, but once you get to know all the nurses it really wont be. And you don't have to suffer side effects, they should all be managed by medication 😊

Stillme

@Sam61 I had four out of 38 LN affected and where I thought I was such a brave girl to have gone through the surgery and ready to get on with life, that news completely floored me and I was so so scared of chemo. I won’t pretend it was easy but you get in your own routine for dealing with it. However, someone I knew only had stage 1 and therefore didn’t need chemo, one year later they found it in his lung and it then made me so grateful that I had had the chemo. Take every chance you can to get rid of this for good :x::x:

1234annie

Folfox all day long!! I had 8 cycles of folfox and 3 of just 5fu. It was ok up to cycle 6 and I would go to Tesco with my pump on and out 4 dinner. I wish I could of carried on with the folfox to 12 but my body wasn't happy. I had 1 node and I didn't get to choose, my consultant said it will come back if I didn't have it! :x: :x: :x:

jinnyp

I had 12 Folfox cycles, during the winter which is not a good time for the effects of cold weather and enhanced sensitivity but it was ok. It’s very doable and although I had my last two doses of Oxy reduced because of neuropathy I would do it again in a heartbeat. Doses can be adjusted for side effects, reflexology helped a lot with neuropathy.
If it was me I would go for the chemo and maximise your chances ....
Good luck, Jane :x::x:

Catt79

Like @Stillme's friend, I was initially stage 1 so offered no chemo. It came back in my bowel and liver two years later, so my advice would be take the chemo, as doctors really don't know everything when it comes to risk of recurrence.

I did six months of Folfox and it was fine (though my dose was reduced after initially making me too ill). I do have some potentially permanent neuropathy but I personally think it's worth it.

I think it's pretty hard that your onc has given you the choice- I just did what I was told 😂 I honestly actually enjoyed going for chemo after a couple of cycles as it's really friendly and I felt like I was a member of the family!

Hope I don't come across as bossy, but if this choice was being given to someone I loved I would want them to take the Folfox to give them the best chance :x::x::x::x:

Jomo9

@Sam61 I was the same as @Catt79 and just did as I was advised. To be honest I’ve said from the beginning that the Oncologist is the expert so I would go along with their recommendation. I had three FOLFOX before and nine FOLFOX after surgery. They adjusted the treatment with length of infusion and ratios to deal with the neuropathy. My suggestion is to make sure you wear a hat, scarf, gloves and warm shoes plus drink a hot drink after the chemo. I still suffer now and have joint pain, but feel much safer in the knowledge that the cancer has been targeted! :x::x:

Clancy

@Sam61 , I agree with Annie, FOLFOX every time, good stuff, and if you can’t cope with it ask for a step down to 5fu. :x::x:

Colin Oscar Pea

Just remember chemo has an end point for you. Short term pain and discomfort is going to be worth it if the cancer does not come back. I had a lot of bad side effects from oxaliplatin and capecitabine but always looked to the end. Now, I know it was worth it.