Bowel cancer treatment and side effects

Lee1974

Who has had the most chemo sessions?

Not a competition or dick waving contest, but I was just curious as to how far we can go with chemo treatments?

I only stared chemo in February and am about to have cycle #20 next week.

I wondered if there were people who were on cycle 50+ etc.

david watt

Is complicated as each cancer case is different and range of treatments is different. Some people have been on maintenance chemotherapy pills more than 5 years, some older people with slow growing bowel cancer survive 10 years without chemotherapy. Having the full whack 3 or 4 different drugs at the same time really takes its toll on you. I would imagine might be some on this kind of treatment 2 to 4 years but would have to have recovery breaks to allow body to heal.

Bear G

Hi @Lee1974
I stopped counting a while back but I’m way over the 50 cycle mark.
Ongoing chemo is becoming more standard as we’re able to live with cancer by controlling it.
In my opinion for this long term approach it’s really important to get a balance with any side effects
How’re you getting on with your treatment?
Big hugs
Bear
:x::x:

Polly 1

Hi @Lee1974 are you still on Folfiri/Cetuximab?
My husband has just had cycle number 18 and is growing a beard (for the first time in his life) as his skin gets very painful - particularly around days 5 to 7. I just wondered how you got on with shaving - although looking at your pic I now see that you too have a beard 😊 Also @Bear G also has his famous beard 😊
Anyone else dealing with Cetux and a beard/no beard dilemma?

Ernie 111

Hi Lee I am on folfori plus cetuximab fortnightly infusions and I have had 100+ come the end of July I will have been on it 4 years

Liriodendron345

@Ernie 111 - that is absolutely brilliant and makes my 53 treatments pale into insignificance (not really) ........ onwards and upwards 😀; of course my chemo buddy @Baxter2 is snapping at my heels 😂 ........ take very good care all, Kim :x::x::x:

Baxter2

Wow! 100+ @Ernie 111 That's amazing!

It's great to know that the treatment is still working for you.

Yes @Liriodendron345 I'm trying to catch you up having just had number 42! I'm following your lead guys!

K💚💛💜💙❤️

Highkaren

interesting...my oncologist only gives 6 to 8 rounds of chemo then watch and wait for typcally 4 months or so with scans in between .....she doesn't see any value in ongoing chemo........may change her in the future if necessary !

Gill

Fortnightly for just coming up to my 40th dose. FOLFIRI for the first 18 months, then FOLFOX (just on my third dose of that one). Having a week off next week to go on holiday! Yippee! (I've actually forgotten the number of treatments I've had!) :x::x:

Polly 1

Anyone just on Cetuximab and 5FU? Our oncologist was talking about the possibility of dropping Irinotecan after aprox 20 but I thought you had to have the full Folfiri to get NHS Cetuximab funding???

504Looby

My Mum is due to have number 53 tomorrow. She had 24 Oxiliaplatin + 5FU and then 24 5FU maintenance dose. She then had a period of time with no treatment but due to changes in the tumours has recently started again and is on dose 5 of 12 Irinotecan+5FU+Cetuximab, then will transition on to another 12 5FU hopefully.

Lee1974
Quote from @Polly 1:
Anyone just on Cetuximab and 5FU? Our oncologist was talking about the possibility of dropping Irinotecan after approx 20 but I thought you had to have the full Folfiri to get NHS Cetuximab funding???

I started off on Cetuximab, 5FU & Irinotecan. I wore the cold cap when having the Irinotecan and I kept my locks.

We dropped the Irinotecan after about 6 months and I have continued to make excellent progress as a Stage 4 patient whereby there is sod all left to be seen on the scans - I was colon cancer spread to peretenium and small intestine, which is why I remain inoperable and on palliative treatment.

My oncologist was happy to take the Irinotecan out so that we had some additional fire power to use if things ever start to slip.

I'm due to have cycle 32 of treatment next week. it has just become a way of life. I don't feel remotely unwell. The only side effects I get are skin related and I was able to continue working full time throughout.

Have relocated now and work from home, but there would be nothing stopping me from holding down a full time gig, apart from needing to attend for blood tests and chemo every 2 weeks.

Polly 1

Thanks very much for that @Lee1974 sounds like our Oncologist is thinking the same about Irinotecan then. I wasn't sure if you could still get Cetuximab under NHS rules without it.

C had a CT scan last week and we see the Oncologist in 3 weeks for the results and plan going forward.

This time his face was really very red and very sore and it didn't clear before yesterday's treatment so he asked if he could miss Cetux this time and just have the Folfiri which they did. He dosnt want to miss any more and now he is on Doxycycline all the time hopefully that will help with future cycles - do you take that as well?

Up to now apart from the skin problems the worse side effect is fatigue and for about a week he can't go long without a 2 hour nap. I'm not sure if this is a side effect of Dexamethasone steroids as he wasn't so tired on Folfox in 2013 after he changed from Dexys to Emend.

His magnesium levels keep dropping as well which I think is due to the Cetuximab. He is having a 1 hour magnesium infusion most cycles now to top him up.