Adjuvant chemo?

Hi Richard21 and good to hear that you’ve recovered well from the op and there is no lymph nodes affected. I’m also a little surprised that you’re being offered chemo - is there some vascular invasion/ EMVI positive? Has he advised what % benefit the chemo would add?

The decision is obviously yours but I will say that 5FU seems to be fairly tolerable - it’s the oxaliplatin that causes the main side effects. If you type 5FU in the search box at the top of the screen then filter it for Bowel cancer then you’ll see some previous posts. I think both @Crumpetsortoast and  Gemmary  have had 5FU so hopefully they’ll pop in.

My friend advised me to accept everything I was offered to treat my cancer which I did. If you decide to not have the chemo then you must be happy with the decision and have no ‘what ifs’ if anything were to crop up in the future. You could start the chemo and then tell them that you want to stop if you start to struggle with any side effects - that would be your decision. 

Here’s a link to the Macmillan page about 5FU and I hope you are able to come to a decision that you’re happy with. Good luck with the reversal too when it comes to if - lots of help on here if you need it 

www.macmillan.org.uk/.../fluorouracil-5fu

Take care

Karen x

Thanks Karen.

He didn't say there was any vascular invasion or that I was EMVI positive.

He said although the lymph nodes were clear, one had some mucus in it. But that's all.

I am not sure if this is why he wants me to have more chemo as he said he generally offers it to most patients.

The additional benefit would be 5-10% of curing although I may have nothing to cure!!

I think my main concern is any lasting side effects (few from Cape earlier this year) and pushing my stoma reversal down the road. My surgeon has already told me to contact him via colorectal nurses if I'm not needing chemo so we can get things moving on the reversal.

I'm good with decisions, I won't regret either way, so thanks so much for your reply.

Rich X

Hi,  Richard21 , yes I had 5FU /FA after my LAR /TME, but I went straight to surgery. They suspected nodes, but they were clear (all 40!) but I had vascular invasion. My chemo was over 30 weeks, weekly, though it took 34, and was by IV. I alternated hands each week to give them a small break. Day 1 you can feel rough, don't plan anything strenuous. Day 2 getting there. Day 3 was ok, but after 15 or so starting to feel it, likewise day 4 . Day 5,6,7 generally ok, though nerves kick in on day 7! I drove myself to the hospital (35mile round trip) except for the last 4 when I thought it best not too. Initially bloods were every week, then monthly, which I could do at the GP's 

My opinion would be to try. You don't say your regime, but they will start you on the highest dose for your weight. If the first is terrible they can reduce it. Mine got reduced  twice (see bio) then I told myself 'just one more' .... and then there were none! It gets tougher the further through, but my thought at the beginning was to try it, some is better than none if I stop it. It is generally doable on my low dose/long time cycle, and I worked throughout with modifications and slowing down. Yours may be a higher dose for a shorter time, in which case ask. But also it means even one cycle may help. It is very much a guessing game on our part, but the oncologist has been there before. It depends if you want to belt and brace, so to speak! 

I do have some neuropathy in my fingers which has increased over time, but am now 3 years clear. I'm generally happy o did it, but the oncologist did say I wouldn't get the neuropathy!!! But I wasn't screened for markers (name escapes me, chemo and long covid combined!) which may explain it.

Happy to answer anything I can. Happy thinking!!! Take care

Hi Richard21

Earlier this year, I finished 6 months of high dose 5FU. I did and still do have toxicity side effects, so while tolerable in some ways, quite life limiting in other ways.

Decision can be a challenging balance between hoped survival time and quality of life.

I'd suggest a further discussion with your oncologist to look at your specific health conditions and lifestyle preferences, risk likelihood, and weigh all up against gains that they forecast for you in your latest state.

And, as you point out, the mentioned 5-10% needs to be marked against something.

Thanks Crumpets! 

I will be having a second consultation next Thursday. 

He certainly wasn't pushing it on me and conceded that in all liklihood there wasn't any thing to cure. It's the not knowing! 

I am somewhat tempted to go for the 5FU with folinic acid for 4 months on the basis that I could stop it if side effects are bad. But really annoying that I would have to postpone the stoma reversal for that extra amount of time. 

I had tingles in fingers with Capecitabine but the cold sensitive neuropathy I've read about sounds horrible.

He also had concern about diarrhea with an ileostomy.

Oh well a few more days to think about it yet. 

Good luck and thank you. 

Rich. 

My late husband was not given the option of any post op chemotherapy although I asked should he have it as a precautionary measure incase anything was missed. Got told if its not necessary they don't do it. He got his operation in January 2022 and everything as far as they were concerned was clear. Five months later in May of the same year it was back. Which meant he had to go through more chemo which made him very ill and had to to be stopped it was CAPOX (Capecitabine and Oxipalatin) he went back on which worked to reduce his tumour for surgery. He completed 4 sessions before becoming very ill and had a break for a couple of months and then he was put back on 5FU which unfortunately he could only complete one session of before they found out the chemo had caused kidney damage so had to be withdrawn completely. Four bouts of sepsis followed and it was the 4th one along with the progression on the cancer which took him on the 23rd June this year. I would say to anyone being offered post surgery chemo to take it but then that it up to the individual. I feel if my husband got it when I asked he may still be here but then again his is just maybe one of a few isolated cases this can happen to and not everyone will experience it. I am just very bitter that because I asked was told no things may have been different if he had got it even in a low dose as a precautionary measure. Best wishes to you on your decision. 

Vicky x

Hi Richard21  I like gemmary did 30 weeks of 5FU plus folinic acid the worst for me was the weekly dig around to get the cannula in. I had no lasting effects although my liver enyzmes weren’t too happy so I had a couple of dose reductions. But very doable especially in your case 4mo rather than  6-7 months. 
I  would always grab whatever they offer ( see my bio) 

You  will make the best decision for you I am sure. 

Thanks for all the comments.

I have written a pros and cons list together with about 8 questions for the consultant.

I think the key things I am thinking are that this is not primary cancer treatment and that I had all that back in Feb/March for what was described as a small localised tumour that had been caught early and that the subsequent scans and histology showed a complete eradication of it. The 3 biopsies I required to get a positive cancer diagnosis all but removed it.

It's true that I may tolerate the 5FU/FA quite well as I did the Capecitabine  (which I've read converts to 5FU in the body)  but the doses will be higher fortnightly than the Cape. I can also stop the treatment if not tolerable which is a luxury I wouldn't have considered with my primary treatment.

Next is the ilestomy and pushing the stoma reversal down the road an extra 4 months plus recovery time before getting listed for the op. I am not getting on too well due to leakage and rash. The stoma team are brilliant and I know with tweaking bag types and seals we will get there, but I really want done with it sooner the better..

At the moment I'm 70/30 for not doing it but got 3 more sleeps and people to talk to.

Thankyou, Richard.

Hi, Richard21 , hope your meeting went well, and you have found a way forward.

Hi Vicky I’m so sorry that you’re going through that awful thing of “what if”. I can understand a little of that feeling from a personal perspective. I had a liver resection last September and was told they’d got all the cancer that they could see. Less than six months and it had spread. I asked why I wasn’t given mop up chemo, and was told it wasn’t appropriate! Now having had chemo I’m waiting for scan results to see where I’m at. I was given 6-12 months if I didn’t have the chemo. Not much of a choice. I hope you are getting support through this incredibly difficult time. Have you contacted your hospital PALS? I emailed mine to query something in my hospital records which mentioned retrospective sight of my liver lesion back in 2020. Take care of yourself.