Chemotherapy or not? (bowel cancer)

Hi Dgh,   I had capecitabine for 5 weeks with radiotherapy before my operation and as part of Capox for 3 months after the op as mop up. I didn't have much in the way of side effects with the first lot and although I did get some with the second lot I think most of those came from the Oxaliplatin.   As it was mop up, when I had a problem the oncologist reduced the dose of both drugs.

I would, perhaps, in your case talk to the oncologist about the benefits and whether they would adjust the dose or even stop it if you had problems. I was given the choice of having it or not but, if having it was going to give me a better chance of surviving this cancer, I thought it was worth a shot.

So far I am one year 'clear'.   Whatever you decide I wish you all the best with it,

Cheers John

Thanks for your reply John,

The oncologist has said that I can stop the treatment if having problems. Interesting to know that potentially the dose can be reduced too.

Great to hear that you’ve been clear for a year.

All the best, dgh.

Hi Dgh

I had a tumour removed in April and was advised to have a course of chemo as they were concerned there were cancer cells in the microscopic blood vessels. I had 3 choices! Two lots that lasted 6 months or one that lasted 3 months! I opted for the 3 month one! This is capix infusion then 14 days of capecitabine. I've just finished my second lot which was far worse than the first!!! These included feeling very sick, shaking loads, neuropathy, loss of appetite and could only drink water. Tbh I'm not looking forward to the next lot but I think it's the infusion that affects me the most. It took me 8 days to get over the symptoms. I'm hoping it won't be so bad next time!

Pauline

Hello Pauline,

Thanks for your reply, your diagnosis sounds very similar to mine although the oncologist has only suggested the 6 month capecitabine with me. Maybe I should ask him if there are any alternatives as I’m still undecided whether to go ahead. It really sounds like you’ve had a tough time so wishing you all the best for the remaining cycles.

Best wishes, Dave 

Morning Dgh

The first one wasn't so bad! I chose to have both together because I wanted it over a shorter time and get back to work! From what I've read on here the Capecitabine on its own doesn't seem to give as many side effects but everyone is diff!!

Hope it goes well

Pauline

Hi Dgh

I had a bowel tumour removed in May '19. Like you, there was no lymph node involvement; however, I did have EMVI in the blood vessels near the tumour. My Oncologist at the time was adamant that I did not need follow up Chemo. because of the 'slightly better chance of the cancer not returning,' as you were also advised. I was a bit confused as to what to do....& my daughter asked her own GP...who said that if it was him, he would opt for the Chemo. However, like you, I was also wary of side effects, & as my Oncologist was so insistent at the time...I went with her expertise.

However, I had a CT Scan in March '20, which unfortunately showed up two very small mets. in my right lung lobe.Then - my Oncologist put me on 8 rounds of chemo. to hopefully shrink the nodules...so that I could have lung ablation. I was supposed to have the infusion of Oxyplatin plus capecitabine tabs....But, I was very dubious of the infusion, as I've heard it is notorious for causing Neuropathy in the hands & feet...& as I'm an artist, I decided that I only wanted the Capecitabine. She agreed with my decision. I ended up having only 6 rounds of the Tabs (instead of the 8,) as I developed bad palmar Plantar in my hands. However, the Tabs. had worked - in that the tiny tumours shrunk, & I had a successful Lung Ablation procedure in Oct. '20. I have recently had a CT scan...which shows that at the moment, shows I am free of cancer.

So....my advice to you, would be to give the Capecitabine a try. I can honestly say, that I suffered no side effects for 5 months, until the final cycle. If you do experience any side effects, keep a note of them...as they can reduce the dosage at any time.

Obviously, everyones' experience will be different....but from mine, I think I would definitely have opted for some Chemo following my Op.

Best wishes

Marianne 26

Snap! , 40 or so nodes were clear, but I had vascular invasion as they call it. I started on 30 weeks of 5FU  IV weekly. In that time they reduced it twice, and refused it 3 weeks, which got added onto the end. I decided to give it a go , and if it got too much to quit. In the end though I just said, 'one more week', and then there were no more weeks!!!

Side effects were cumulative but I did manage to do part time work throughout, working round the times I felt rough. Normally the 2 days after, increasing to 3.

I think you need to check what chemo you are going to have. It also might depend on bowel or rectal cancer, as the latter is more enclosed, and the thought is it might spread easier?? Mine was a low dose over a long time. It is supposed to be a common regime for rectal cancer, but I rarely find anyone who's had it! If this is your option, happy to give further info.

Thanks for your reply Gemmary,

Yes sounds a very similar diagnosis. I had 22 clear nodes. Mine was bowel, not rectal, cancer. I had high anterior resection surgery. I’ll ask my oncologist whether it will be a low dose over a long time which is what it sounds like.

best wishes, Dave

Hi Marianne,

Thanks very much for your reply. Pleased to hear that you’re currently cancer free. It sounds from the responses I’m getting, although everyone is different, that the side effects are potentially not as bad with Capecitabine only, compared to the infusion too. The oncologist did say that some people are able to carry on working during it. Especially pleasing to hear you had no side effects for 5 months.

Thanks again, Dave

Hi Dave. Like John, I had 5 weeks of Capacetibine along with radiotherapy before surgery with little or no side effects. I had 6 months of Capacetibine adjuvant chemo. The side effects were  hand and foot syndrome( palmar plantar). The skin peeled off my hands and feet and was very sore. I managed it by keeping my hands and feet well moisturised and wearing cotton gloves and socks at home, even in bed. I felt generally well otherwise though. I am almost 2 years clear. I have my 2 year CT scan on Friday 16th July. Saturday will be 2 years since my surgery so hoping for good news again this year. Good luck with whatever you decide.

All the best.

Kim x