Stage 4 bowel cancer

determinedjoan

How to access Immunotherapy ?

Have read on the Forum that some patients have been taking Cetuximab along with Folfiri chemo ; how can I find out if I have/haven't got the KRAS mutation and whether I would be a suitable candidate for immunotherapy - seems to be so much in the news recently about its benefits to some patients with breast and prostate cancer.
With thanks
Joan.

Polly 1

Hi @determinedjoan - your Oncologist should be able to tell you if your original tumour was tested or not. My hubby had his bowel resection in 2012 and I'm not sure if they did it then.
When he had his liver resection in 2016 that tumour was tested and when we asked for a copy of the histology report it included the results of the KRAS test.
As the liver resection had been done at Birmingham our local oncologist hadnt got the report and when I showed him he immediately copied it for his file and said hubby would be able to have Cetuximab alongside Folfiri. He has been on it now since August last year.

determinedjoan

Polly that is so v helpful, thank you.
Delighted to hear that your husband is doing well.
Every good wish
Joan

Baxter2

Hi @determinedjoan and welcome to the forum!

Ask your oncologist about the KRAS test on your tumour. I'm not 100% certain they always test initially but your tumour sample will be stored somewhere and can be tested. If your wild type (like me) you can have a biologic such as Cetuximab along with perhaps Folfiri. I'm on this regimen and just had my 42nd cycle of it this week.

Good luck!

K💛💜💙💚❤️

Polly 1

Hi @determinedjoan

As you may be aware there are NHS funding issues with Cetuximab so you have to keep going with it otherwise you lose funding. You also have to have it 'at the right time' otherwise it is also not available on the NHS. So something to ask your Oncologist about before you start further chemo.

determinedjoan

42nd cycle Baxter 2 ! Wow - respect!
Thank u all for ur immensely informative & helpful responses.
Saw Oncologist today & asked about Cetuximab with Folfiri; sadly, because of KRAS status, this wouldn’t help me & might actually make things worse for me, but so grateful to this community for enabling me to at least ask the question, thank u.
Every good wish Joan

Baxter2

Sorry to hear that @determinedjoan

As you say, at least you're informed and aware of this now. There are many alternative treatments around so keep up the research! The forum has a wealth of information, advice and shared experiences and hopefully will help you navigate your way forward.

Lots of love and very best wishes,

K💛💜💙💚❤️

sophia

Hi @determinedjoan it sounds like they have done all tests if your oncologist mentioned your KRAS status. Do you know what this is? Are you braf? most important thing to find out for immunotherapy treatment is your mss/msi status. If you are msi or mmr deficient (which is only a very small percentage of colon cancer patients - I think around 10-15%) you could consider keytruda however this isn’t nhs approved at the moment I don’t think and it only works in about 30-40% of that subgroup of people. I would be speaking to my oncologist to push for trying it though somehow if you are msi because it has yielded some amazing results for the few people it does work for.

Jo

Hi @sophia. What is the mss/msi status? I am newly diagnosed and trying to understand as such info as possible. Thanks Jo

Quote from @sophia:
Hi @determinedjoan it sounds like they have done all tests if your oncologist mentioned your KRAS status. Do you know what this is? Are you braf? most important thing to find out for immunotherapy treatment is your mss/msi status. If you are msi or mmr deficient (which is only a very small percentage of colon cancer patients - I think around 10-15%) you could consider keytruda however this isn’t nhs approved at the moment I don’t think and it only works in about 30-40% of that subgroup of people. I would be speaking to my oncologist to push for trying it though somehow if you are msi because it has yielded some amazing results for the few people it does work for.

sophia

Hi @Jo. I think this should be on your histology report if not ask your oncologist. The challenge with immunotherapy is it that at the moment it only seems to work best on highly mutated tumors. For colon cancer that is people who are micro satalite instable or mmr deficient (which is only a very small subgroup of patients). Lots of research being done to try to improve this therapy and make it more widely available but at the moment the science still isn’t quite there for most cancer patients.

determinedjoan

Thank u sooo much for these incredibly informative & helpful replies - greatly appreciated :x:

Smu2

hi, my mum is kras mutated rather than kras wildfire and so she also cannot take Cetuximab as it will not work for her.

we have had a test done by Oncologica on mums tumour to check for PD - L1 levels and this has come back saying immunotherapy is a potentially a very good option for our mum. you need over 1% of the tumour mass to show levels of PD-L1 to be considered (apparently) and our mum is 3%. the next step for us is to have the mss / msi status checked to build 'further evidence' as to why our mum should be prescribed immunotherapy.

i thought you might be interested in having this done or looking into Oncologica and so i've linked the test below -the oncologists at the lab talk you through the results and really give you their all in explaining what to do next in terms of approaching your oncologist. they have told us to build 'evidence' to put a case forward as to why mum should be on immunotherapy - sounds mad doesn't it, but you really do have to fight for everything.

www.oncologica.com/immunofocus/

we did the oncofocus test, which included the immunofocus test and this was €1750 :( its not cheap but its given us some good information and a 'toolkit' to try get our oncologist onside.....

good luck!! :x: