Bowel cancer treatment and side effects

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rockandhardplace

Undecided about having adjuvant chemo (CAPOX) following surgery

I was diagnosed with bowel cancer in April and had surgery in May. I have been offered adjuvant chemotherapy as cancer was found in 2/6 lymph nodes. But I REALLY don't know whether to have it or not. I am very worried about long term as well as short term side effects. My oncologist has advised that chemo can increase the 5 year survival rate from 70% to 80%. But he has also advised that it is possible that I am cancer free after the surgery so chemo may not be needed at all. But there is no way of knowing. Has anyone else in this situation decided NOT to go ahead with the chemo. And if so, what helped you decide?

Ninatoo

Hi @rockandhardplace . I didn’t have chemo following removal of my tumour but I was part of two studies. In one I received an immunotherapy course over eight weeks which flared up my asthma very badly. It has settled back to normal but it did take a very long time. The other was a study investigating circulating tumour dna (ctdna). The idea was that if I had some I would receive chemo but if i had none, I would not, and just be monitored through scans and blood tests. I had no ctdna so no chemo. A bit scary but I was in good hands. The aim of the study was to determine whether some patients might be over medicated when there is no need. I would have had standard chemo treatment following surgery if I had not been part of this study. It’s been two years now next month and so far, so good. I don’t know if the blood test for ctdna is available to everyone yet.

rockandhardplace

Thank you all and especially kawa909 who has given me lots of extra info. I have finally decided to go ahead with the chemo after much research and mind changing .Now putting a plan in place to try and get through it as best as possible. .

Forum user

Hi @rockandhardplace I totally think you have made the right decision, wishing you well with your treatment take care cheers John,:x::x::x:

Liz Blakelands

@rockandhardplace Well done for making the decision and being in the driving seat. All best wishes that the treatment goes well :x::x:

rockandhardplace

Thank you for all your good wishes. It is so helpful to have people here to chat through that are in/have been in similar situation. It all makes it so much less overwhelming. The good and positive outcomes that some people share are very encouraging. and even those of you where things are not going so well, it is so helpful to see that even when times are really tough, you can just get on with it and get through it as best as possible. I am still early on in the journey and at the moment it feels like a full time job. So having this forum is super helpful.

kitti

Hi,
So I had chemo radio then surgery then more chemo. My tumour hadnt shrank with chemo radio so was still 6cm at resection. Despite there being concerns 3 lymphs were involved at resection I had none, but I was EMVI positive. I was given the option of mop up chemo and I took it. I'm 3 years post now and doing ok with my recent blood fine. Good luck with whatever you decide :x::x:

jotty

I had recital surgery and one out of 10 nodes were active, it was touch and go about CAPOX but the extra 10% was worth the risks. Been hard work but I was always borderline, my CSA is 2,7 (under 3 is good) but my Oncologist wanted me to have best chance possible.

rockandhardplace

UPDATE. So had my first infusion of Oxaliplatin on Friday 23 July. It did not go well. Big reaction to it and masses of side effects that have only just gone away. Still a bit of peripheral neuropathy but nothing unmanageable now. Did not even start the Capecitabine. Bottom line is I have been very unlucky and one of the very rare cases that does not tolerate it. My brother said trust me to be special! Had review with oncologist today who has advised not to continue with the Oxal. Phew what a massive relief. I thought I was going to have to make the decision. So glad I did not have to. And such a surprise - I really expected him to say they would adjust the treatment. But apparently my reaction was quite severe - so I feel a bit better that I am not just a wimp! So glad the decision is out of my hands. I now have two options - proceed with Cape only or nothing at all. He said on balance he would recommend to give the Cape a go as I can stop at any time and the side effects much less than Oxal overall. But totally my decision. He said that he would 'not lose sleep' if I chose not to proceed with any further chemo at this stage. He said Cape on its own was about 2/3 as effective as the CAPOX but would need 8 cycles overall instead of 4. But if I wanted to give it a go then we can just take it day by day. If I get side effects they will help me manage more effectively but also I can just stop at anytime. If all goes well we will review at 4 weeks with a view to continuing for another 4 weeks but everything is flexible. I am SO relieved. I can't start the Cape before 13th August so still have some breathing space. I have put a provisional plan in place to start the Cape on Monday 23 August and have until then to make a firm decision. Blood test all set up just in case I do go ahead. Phew! I can have 2 weeks of normality and have some fun.

Gypsy

What a rollercoaster @rockandhardplace but I'm glad that a new plan is in place. I've heard before that the cap does the 'heavy lifting' in the circumstances you are in. Enjoy the next couple of weeks and do have lots of fun! Cathxx

Joshua A

Hello there, i was where you are now about 15 months ago when i had surgery for Col can. Was told it was early stage 3.
So chemo recommended for 3 months. Oxy and capacetabine. The worst was the oxy because it caused the cold sensitivity and foot neuropathy. I tolerated both very well. Im not sure about Capox cannot say yay or nay. Anyways was given 80 to 85% chances. All was well up until last month when my cea started to raise. Went for scan and now i have a spot on my liver. So the chemo didint really work.
But it may for you so if they say an extra 5 or 10% i would take it again because why not? The choice is yours so if you feel like that percentage is not really worth it then dont. I wanted my best possible chances so i took the chemo...and it came back anyway. They need more personal treatment for this crap cause everyone is different and reacts differently. How can they say if it works for 1 in 10 that it will work for you or me?? They can't. But if your anything like me and you want best chances you'll take the chemo. If you have any more questions feel free. Wish you all the best in your journey. Take care

rockandhardplace

Hi Joshua A. Thank you for your post. I am really sorry to hear that you have a spot on my liver. That is really bad news for you. I do hope that the next lot of treatment that you receive is beneficial and puts you in remission. I think that we all have to have in the back of our heads that we can all live years and years even with cancer. My gut feeling is to take the opportunity to try the Capecitabine on its own. I will be much more in control of it and can stop at anytime so I do not have quite so many reservations. Maybe that is being naïve but I think it is probably worth giving it a go. If I react badly to that too then I can stop and at least I can tell myself that I tried. That is sort of how I feel about the Oxy. It was dreadful and I had an awful week, but at least if the cancer returns at any point I won't have that nagging 'what if I had the chemo' . Best of luck to you Joshua A

Joshua A
Quote from @rockandhardplace:
Hi Joshua A. Thank you for your post. I am really sorry to hear that you have a spot on my liver. That is really bad news for you. I do hope that the next lot of treatment that you receive is beneficial and puts you in remission. I think that we all have to have in the back of our heads that we can all live years and years even with cancer. My gut feeling is to take the opportunity to try the Capecitabine on its own. I will be much more in control of it and can stop at anytime so I do not have quite so many reservations. Maybe that is being naïve but I think it is probably worth giving it a go. If I react badly to that too then I can stop and at least I can tell myself that I tried. That is sort of how I feel about the Oxy. It was dreadful and I had an awful week, but at least if the cancer returns at any point I won't have that nagging 'what if I had the chemo' . Best of luck to you Joshua A

Sorry i did not know you had a reaction to the oxy. I forgot to say that i had neuropathy in my feet which is now completely gone. Just wish the chemo had worked better. Good luck with the capec.
Best wishes in your treatment.

Freya84
Quote from @kawa909:
Hi @rockandhardplace one other option might be just to have the capecitabine tablets and not the oxaliplatin. These are the two drugs that make up CAPOX and oxaliplatin provides about one third of the benefit of CAPOX and capecitabine two-thirds.....but oxaliplatin tends to have the bigger risk of long term side effects particularly neuropathy. I decided to go with the full CAPOX (I had 2 of 28 positive nodes but several other high risk factors such as T4, poorly differentiated, BRAF V600E, EMVI+ve) but based on the new guidance of only 4 cycles (3 months) - versus prior standard practice of 8 cycles - thus reducing probability of getting long term neuropathy.

I think I have the exact chart that you might be looking for - shows 5 year DFS for each stage 3 category and breaks down between how much benefit from surgery only, capecitabine, oxaliplatin and 3m v 6m duration.....can message it to you if you like?

@kawa909 is there any chance you could share this chart with me please? Take care :x:

kawa909
Quote from @Freya84:
@kawa909 is there any chance you could share this chart with me please? Take care

@Freya84 yep will do this weekend.

rockandhardplace
Quote from @Freya84:
@kawa909 is there any chance you could share this chart with me please? Take care

Thank you for your suggestion. Yes I did start just the Capecitabine but have now stopped that too. I will not be having any more chemotherapy. It is a huge relief to be honest. I am now focusing on other options.

Peter Crowe

I discided not to in 2019 having 2/22 lymph nodes with cells, but I could not get a DPD test done plus some other nonsense.
18 months later when I had my first post-operative scan ( much later than it should have been) I had a 10CM growth on my liver which has been resected.
Would I have had this if I had taken the treatment, who knows but I still feel that in the situation that I was in it was a valid choice?
Take care :x:

rockandhardplace

HI @Peter Crowe. So sorry to hear that they found a growth in your liver. It is impossible to know if that would have happened if you had opted for the treatment. That is the big dilemma. I feel happy that I have made the right decision for me now. I gave it a shot and I felt this was not the right way forward for me. If the cancer returns then I will deal with it then. In the meantime I am trying to keep as fit and healthy and strong as possible so if it does return I am in the best possible place to fight it. Many best wishes to you.

Molly2me

One of life’s conundrums @Peter Crowe and there isn’t one person who would be able to give you a definitive answer either. I’m sorry to read it raised its ugly head again in your liver. How are you now? Was this some time ago?

@rockandhardplace that decision I had to take too, it’s by no means a cop out and yours words reiterate what my surgeon said to me after I tried for a second time. It’s all mentally and physically draining and takes some recovering from too :x::x:

Quote from @Peter Crowe:
I discided not to in 2019 having 2/22 lymph nodes with cells, but I could not get a DPD test done plus some other nonsense.
18 months later when I had my first post-operative scan ( much later than it should have been) I had a 10CM growth on my liver which has been resected.
Would I have had this if I had taken the treatment, who knows but I still feel that in the situation that I was in it was a valid choice?
Take care