How many rounds of mop up chemo?

Hi Rochelle19, Michelle, I had 4 rounds of Capox for mop up and, as you say, my oncologist said there was only a slight benefit in having more in my case, though it might be different for other people. Has your oncologist said what the criteria would be for them to recommend more, or is it just the 2% that they will base it on? 

I finished Feb 2020 and didn't have any noticeable long term after effects.

All the best, whichever route you go for.

John

Hi Rochelle19,

I had 4 rounds of Capox. The oncologist more or less said research had shown the side effects started to outweigh the benefits for any further treatment. (Not in those exact words but that’s what I picked up from the conversation)

Best of luck in whatever you decide to do

(I had 2 out of 19 lymph nodes affected if that makes any difference)

Suzy

Hi John, thanks for your reply. Oncologist didn't give any specific info, just the 2% benefit, which to be honest she didn't seem very enthusiastic about. If you don't  mind me asking what stage were you? I was initially 3 but they found a microscopic dot on a bit of the peritoneal which was removed with the lymph nodes, so that pushed me to stage 4. Many thanks.                                   Michelle x

Thanks Suzy, yeah my oncologist didn't seem very enthusiastic about the extra 4 rounds either. I had 3 lymph nodes affected, but when they were examined they found a microscopic dot on the peritoneal. Everything was removed, I'm just worried that if they missed that bit, they might have missed other tiny bits?How long did you have to wait for a scan after you finished the chemo?                     Many thanks.                                                 Michelle 

I finished chemo mid-May & they said I’d be due a scan in January (2022) they said it was because it would be one year after my surgery

Hi Rochelle19. I had 6 rounds of capox then 2 of just capecitabine. They didn’t let me have the last one as they said my feet were getting red and they actually got worse after stopping - peripheral neuropathy/palmar plantar. My feet still feel sunburnt ie. hot and tingly with reduced sensation 5 years on. It’s not hugely debilitating  just annoying and I often sleep with my feet out of the covers! Maybe you could just take each one as it comes and make sure you refer any issues to the nurses? x

ps I had 2/17 lymph nodes affected. The recent scot trial showed that 3 months are as effective as 6 but I’m not sure if that’s just for lymph nodes whereas you might be having more to make sure the peritoneal bit is zapped?

Hi Karen, thank you for your reply. You did really well to get through so many rounds. I had a reaction on my last round, which has terrified me incase it happens again. I think you're right, I'll just take each one as it comes and speak to the oncologist after the 4. How long did you wait for a scan after your treatment was finished?   Thank you.                           Michelle xx

Rochelle19. They stopped the oxaliplatin because I said that my tongue felt numb - like I’d eaten a full bag of aniseed sweets in one go! The capecitabine on its own is a lot easier. I had a scan about 2/3 weeks after finishing x

Thanks Karen, I was thinking maybe the capecitabine on its own could be an option, after the 4 rounds of capox. I'll mention that at my next meeting. Thanks xx

Oh, I meant to say I also took a throat spasm after round 2 & they increased my infusion time to over 4 hours (instead of 2 which helped) the doc did give me the option of stopping the oxaliplatin cpletely but it would have meant a further 12 weeks if the capecitabine so I chose to keep going