Chemo as a Precaution and Some Questions!

FormerMember
FormerMember
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Hey all.  I hope you're all doing well and living as best you can.

So my surgery was back on 22/12/22 and all went really well (left hemicolectomy). I’m back to full health and eating better than I ever have before. Loads of nutrition and all that good stuff 

But it ain’t over yet .. that would be too simple!

i’ve been advised that I should start 6 months of chemo to make sure that any nasty cancer has gone.  My cancer was T4A/B N2A with 5 surrounding lymph nodes involved.  I also have been told I have Lynch Syndrome.  So the oncologists recommended 6 months (as I mentioned) of both tablets in the form capecitabine and Xerol/Capox (oxaliplatin) in the form of IV.

I've made the personal decision to go for the tablets and NOT to take the IV for so many reasons that I won't go into here.

I'm just curious who here has had experience with these drugs and did you suffer many / any side affects and if anyone else has refused certain treatments?  I seem to be the anomaly with all my surgeons and oncologists in how I question things :-)

Big love to you all, Ebbs xXx

  • without understanding your reasons for refusing the I/V, it is hard to comment further. But with a T4 diagnosis and 5 nodes involved i would take everything they offer you

    cancer SHOULD NOT / CANNOT  be treated/prevented with diet and some hefty lifestyle changes only.

    Do not mess with it or think you know better than the medico's.  That is a high stake decision and it is your life you  are risking. 

    Im sorry if that sounds harsh but i have known a number of people who thought they could beat their cancer naturally.... all either failed or left it too late for conventional intervention that may have altered the course of their disease  

  • FormerMember
    FormerMember in reply to Parky2170

    Hi Parky,

    Thanks for your reply. I don’t think it’s harsh but I do see it as purely an opinion. I am taking the chemo tablets but opted against the IV which I was told only offers me a 7% “benefit”. Those odds balanced against side affects are just not something I’m prepared to gamble on. 

    As far as my cancer goes the surgery (as far as they can tell) got it all. I won’t live in fear of cancer and have made my decision based on what I believe is the best action for me. 

    I also think it’s an absolute shame that nutrition and lifestyle is totally ignored. There is some VERY strong evidence and studies that have proven the benefit of nutrition and lifestyle changes that work WITH chemo. 

    Cancer is a loaded topic and I get that and again I appreciate your comment. No decision I have made has been done so lightly. 

    we’re all on our own path xXx 

  • Hi . I had a higher anterior resection in July 2022 with final staging T3N1M0, my oncologist then recommended 4 rounds of CAPOX to get rid of any stray cells which I wanted to do. The chemo was doable, I will agree that the oxaliplatin was the hardest part of the treatment but I personally wanted to throw everything I could to minimise a reoccurrence, belt and braces approach. I also would not be able to cope with any regrets at not undergoing the full treatment regime if I did have a further episode. I got through the chemo, with no breaks in treatment and managed to maintain my normal daily routines which include walking my dog and working full time, albeit from home. There are many publicised side effects and you would be really unfortunate to suffer them all. I was very lucky, mild neuropathy on hands and feet, feeling sick which I managed with sucking boiled sweets but that was all. I  am a very positive person and this helped a lot. You need to do what is right for you xx

  • It’s your choice, of course, but personally, I don’t think 7% is a small benefit.  For me, with numbers like this, it helps to think to how many children in a school class they correspond.  Seven percent is about two or three children in an average class. That’s not negligible.  
    Why did you choose to not even start the oxaliplatin? Side effects in the first cycle would give you an idea of what to expect later: starting oxaliplatin doesn’t mean you have to complete it, certainly not at full dose.  

    Since you mention lifestyle: that  likely has an effect on chemo side effects. There are strong indications that patients who exercise during chemo have fewer side effects, and that the relationship is causal.  

  • FormerMember
    FormerMember in reply to Vis

    Hi Vis,

    i do find it fascinating how people respond when someone turns down a particular treatment. 7% is not negligible but for me a person who is technically cancer free after surgery is not something I see huge benefit in putting my body through again. I’m opting for an extremely rigid nutritional programme together with the chemo tablets.

    I’m not giving anyone advice here but it’s my body and my belief down to my core is that my cancer was born out of some pretty horrific life stresses and not taking care of myself. We always have a choice in life and kine has always been to question and be curious. 

    strong evidence around exercise, food, supplements and mental health xXx

  • The 7% improvement in survival that you mention with adding IV Oxaliplatin could just be the difference between life and death for you. 

    As others have said, take everything you are offered. Oxaliplatin toxicity is easily spotted and adjustments can be made.

  • Firstly, Im glad you dont see it as harsh, 

    Re nutrition and lifestyle, certainly nutrition has a massive effect on avoiding getting cancer in the first place, i am a firm believer that excessive anything from fats to alcohol to a sedentary lifestyle  are all very important initial factors in prevention. However once the beast has reared its ugly head, other dynamics come into play and  is entirely correct there is great data on exercise benefits for both minimising chemo  effects and also prognosis. 

    tbh Pretty sure alcohol has been my downfall for developing cancer. 

    Re 7% everyone has their own thoughts on % and ratio's and it is a personal decision for everyone ( but you did invite the responses ;) ......  i didnt have to do oxaliplatin and i dont envy anyone having to do it, usually it is a 3 month course so the Drs obviously feel with your diagnosis the longer course is warranted, maybe you could find a middle ground and start off with the shorter course and keep going after that if you feel able. 

    Another factor is age .... and family circumstances  etc etc  

    i am sure you will make the right decision for you. xx

  • What do you mean when you write that you are ‘technically cancer free’? And why do you not reject chemo altogether, but only the oxi? 
    You’re not the only one who likes to ask questions Grinning?

  • FormerMember
    FormerMember in reply to Vis

    Ha ha, ask away ...

    So I'm "cancer free" in as much as all the cancer was removed during surgery with part of my colon.  It hadn't spread (other than a few lymph nodes that were also removed) to any other part of my body.  The only reason chemo is offered is for adjuvant therapy, to try and make sure it doesn't come back.  Something I believe can be done through many lifestyle changes.  

    It's like when I had surgery, their advice was for me to have my entire colon removed even though it was healthy.  So I told them 'no'!  I just want you to remove the part that was cancerous (left hemicolectomy).  The reason I'm not fully 'against' all the chemo is that I have Lynch Syndrome which adds a layer of complexity and higher percentage risk of recurrence.  

    I'm also a big fan of doing my own research outside of the traditional medical model Slight smile

  • FormerMember
    FormerMember in reply to Mel M

    Hi Mel, thanks for sharing your experience and not trying to 'persuade' me either way Slight smile.  I hope that you've seen the back of cancer and so glad to hear that you managed to get through chemo without sacrificing your usual routines.  And thank you, I only ever try and do what's right for me even if others disagree or think I'm insane xXx