The Colon Club

Hi,

I don’t know if anyone can help or give at advice. I’m 24years old and was diagnosed with Familal Adentomys Polyposis 2 years ago. I have had my rectum and colon removed and they found a 7mm poly with cancer which spread to one of my lymph nodes.
I am now on 12 cycles of Folfox, I have just had #2 and already want to stop!
I know I won’t manage the full 12 cycles but I was just wondering if anyone knows anything about stopping at #6 or anything?

Hi ,
That sounds really rough . Have you spoken to your team yet ? My mum had a dose reduction which made her side effects much more manageable. She only ever did six at a time .
Take care,
Stu

Hi Stu,

Thank you for replying. I spoke to my oncologist and they said that 12 cycles is the least I can do? I can’t move to tablet form because it will affect my stoma and cause other problems!

I spoke to my mum today and said I’ll probably try 6 cycles if I can because these side effects are dreadful! I’ve barely eaten anything for 4 days now!

Agree with above comment. .

What issues "exactly" are you having with the chemo? Side effects, etc. Maybe we can help here.

Lee

Thank you

My throat is very sore, can barely eat and drink. My feet are agony to walk on and I worry the more sessions I have the worse it will get! My mouth is very sore too!

The low mood/depression is awful too, having no quality of life and not being able to move out of bed or go to work!

I have read that 6 would be enough cycles but my oncologist doesn’t seem that understanding about it!

Thank you for replies

I would do whatever the oncologists recommend you do. I also have FAP, the only one in my family so it is a muatation that caused it during birth. I didn’t find out until I was 35 years old and had my colon and recum removed. I was diagnosed at Stage 3B and did 12 rounds of Folfox. After that they found cancer in a para aortic lymph node and I started on Folfiri + Avastin for life. The cancer then spread to my lungs and after more genetic testing it was determined that there weren’t many types of chemo that would help the lung Mets. Those have since spread to my brain and I have had SRT radiation to help those spots for a few months.

My advice would be to do whatever the oncologist tells you. Chemo sucks but it does help and it may be the thing that prevents the cancer from moving someplace else. Between all the different chemos I’ve had over the years it’s more than 65 treatments.

I had mouth sores for my first and second round but then they never came back again. I've realized each round came with different side effects and I just have to be proactive about managing whatever comes.

I also had a chemo break after about five cycles. It wasn't planned, they had to do it because I had an infection and needed to heal. But I will say that my chemo was WAY easier once I restarted. I have GI issues, but almost none of the fatigue that plagued me my first five cycles. I think because the cancer was lessened by then, and my body had a chance to recover from the chemo. So a break halfway in is something you could ask about.

You can get though it!!