Stage 4, FOLFIRI and Cetuximab, enforced 6 month break? Is that correct?

FormerMember over 3 years ago

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Hi, perforated bowel and diagnosed Stage 4 colorectal cancer, also in omentum and lymph nodes.

12 sessions, final CT scan showed no visible signs, so Oncologist decided 6 month break, after which CT scan showed back with a vengeance, peritoneal malignant mets!

Then told no more Cetuximab, as cancer had probably developed resistance to it, now on FolFox with Oxaliplatin.

Just read about NICE rules, if off Cetuximab for 6 weeks, cannot be put on it again, which disturbs me as I responded so well first time round!

My question, did oncologist get it wrong? Is it all about costs and funding, might a different hospital/oncologist put me back on Cetuximab after just a 6 week break, feeling confused, do I now need to challenge oncologist decision, if I can not now get Cetuximab, can cancer become resistant to Cetuximab, or was that just a line to keep me quiet?

As I'm 70, is age also a consideration, at some hospitals, feeling potentially let down by NHS funding and politics, be good to hear if anybody had first line Cetuximab and us continuing with it?

Thanks in advance

Ian

court over 3 years ago

https://www.bowelcanceruk.org.uk/news-and-blogs/research-blog/what-are-the-changes-to-the-treatment-break-rule-during-the-coronavirus-pandemic/

I have enclosed the link to bowel cancer U.K. on the extended rules of Cetuximab due to covid which is replacing the previous guidelines . I am not sure what the rules are on when you move from first line to second line . However to put your situation into context my mum had Oxaliplatin and capecitabine . And immediate recurrence after surgery but her oncologist mentioned that since she had six months between chemo she was allowed to use the same chemo again . She responded well to it again the second time . So I am always confused when they say someone fails . My understanding is if microdisease is still present then a regrowth is expected however I don’t see how they conclude the same chemo would not be possible to reduce it again like my mum did . That was ten years ago and I accept research and protocol changes . I totally understand if you get disease progression on chemo ! That’s different but I really don’t understand.

Age is not a factor in the NHS and there is legislation to ensure it ! However frailty is but then they would not be considering other chemo in that instance .

Oncologists work very much on clinical judgements in a stage 4 setting with research as a frame of reference but you will see different oncologist using different approaches for the same issues . Getting that to line up with your own goals can be tricky that’s why I am a big believer in second opinions ! It’s not to say your oncologist is not using an acceptable protocol but another may be more aggressive in their approach.

Is surgery a possibility? Are your organs clear ?

You will see some people using maintenance chemo . Another oncologist may use a different approach so might be worthwhile looking into this aspect . One thing for sure you are clearly a big responder to chemo so that is very important.

Our helpline staff might be able you give you more information as this is just my own opinions but we did have an oncologist initially who wished to use that approach with my mum and we did seek surgical opinions . Not ever one is suitable for surgery as you are aware but the reason I mention it is was good to hear what others were using to treat it .

Sorry you feel let down . I think it would be a common approach for some oncologists but again others would possibly use a different approach.

Does any of that make sense ?

Court

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