Surgery after Chemoradiotherapy & Capox regime

Bella,

I'm pleased to hear your husband has completed chemo. 

I had 6 weeks chemo/radiation followed by 12 cycles of Folfox chemo. So I think we had a similar treatment path so far. 

1) my peripheral neuropathy got worse after completing chemo. Tell him to try exercises for his feet and hands (as appropriate) to increase circulation. These can be simple things like ankle rolls that he can do while otherwise resting. I don't know for a fact that it helps but I think it helps me. 

2) I had my follow up scan in early April of 2024 and could not get to surgery until early August 2024. I doubt you will have to wait so long. I live in the US and specialist surgery intakes take forever to schedule. And I need to go to 3 surgeons (we ended up going with only 2 surgeons because of how challenging the logistics were). Your healhcare system seems a tad faster and he will only need 1 surgeon and you only need to find an opening in 1 schedule. 

I won't comment on recovery time. The surgeries were simply too different. 

Keep us posted on his progress. 

Thank you Susan, 

thats reassuring - we were hoping we could get a visit to the states in before surgery to see our son and attend a family wedding. It would give him such a boost before surgery I’m convinced it would do him the world of good mentally. 

Where in the USA are you ?? 
B x 

I'm in Michigan. That's next to the Canadian border sort of in the middle and nestled between the Great Lakes. Detroit is here if that helps (sometimes people know cities instead of states). Sorry if that's overly descriptive or simply confusing. I never know how to describe geography. Lol

I think a trip would be marvelous if he is up to it. Like you said, it would really lift the spirits.

When I was in chemo and and waiting for surgery, I developed a brand new habit (for me). I started getting my nails done. I've never been a girly sort but I was so sick I couldn't do much else and I just needed something! It had a remarkable effect on my mood and I think it helped pull me through. So much so that I am continuing the habit a year later. 

Aww fab xxx son is in Boston x 

Hello.

I'm in CAPOX therapy at the moment. Almost half way...

I had surgery first, and then lymph nodes were found, hence the chemo.

I recovered incredibly well (and fast) from the surgery. Very grateful, of course but I believe it's partly due to my stubbornness to keep going, both mentally and physically. So far, I've not spent a single full day in bed and only treatment days not walking, at least a little bit every day.

I've had a range of side effects, expected and unexpected but the neuropathy has been the biggest surprise. It's one thing to read about but completely different to experience it.

I'm pleased to hear I'm not alone in that. My journey is not over but it helps to chat with others experiencing similar things.

Thanks,

M

Hi MMO...I´m in exactly the same position, and about to start 4th round of 8 with infusion on Friday. So far so good. Only real side effects were a couple of days of painful sore feet on each of the first 2 rounds (interestingly, both times, on days 13 and 14 of the CAP tabs. So for 3rd round my CAP dosage was reduced from 8000 a day to 6000 a day, and no problems this time. I had hoped that they would let me adopt the 3 month protocol instead of 6 month, but since they found 5 lymph nodes (out of 45) they still recommend the full caboodle. Continuing good experiences on your journey

Surgery seems to usually be scheduled around 6-8 weeks after completion of treatment. I didn't go straight to surgery myself (as was originslly planned) due to having a good response to chemoradiation and chemo. However, after only 6 months on 'watch and wait' the tumour returned and I had an AP resection in Jan'25. It is a big surgery so recovery takes time and patience but definitely worth it.  I feel I have my life back now and have just returned to work.

Thank you for sharing xx I guess we will find out next week - the waiting for appointments is torture though xx 

Bx

Hi MMo 

thank you for sharing xx 

He's coped with the treatment really well so far so hoping that trend continues. 
He described it to me as like you’ve waved your arm on a bush of stinging nettles and the stinging effect doesn’t go away!! 
he had it bad in his infusion arm one cycle but now when last Oxaliplatin infusion was on 30/5 hes getting it on his feet mostly. 

Good luck with the rest of your treatment you sound like you have a great mindset to deal with it 

Bx 

Hi ChrisVLC 

Thank you for sharing  x

Hoping the reduced dose will help.

OH had a 25% reduction in the oxaliplatin on the last (4/4) infusion but they didn’t reduce his capecitabine at all. 
The feet neuropathy seems to have developed after the last one & has not eased as times passes so I’m hoping it will soon 

wishing you well 

Bx