KRAS positive gene mutation

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Hi all

I was wondering if anyone here has had this biomarker detected in their cancer cells and what have they experienced since diagnosis and treatment.

I was diagnosed with upper left lobe lung cancer in August 2023, after subsequent tests it was staged as 3cm T2a N0 M0 and I began treatment of SABR radiotherapy, having had my last treatment on 15 December 2023. First follow up in March 2024 was good, with an almost 50% reduction in size, which the Oncologist said was a good quick response and follow ups need only be six monthly, second follow up in September 2024 showed a further reduction. I will have my third follow up in March.

What was discovered in tests on the cancer cells after a lung biopsy was that I was positive for the KRAS mutant gene. None of this was mentioned to me at the time, I just saw it in my copies of correspondence to my GP.  After researching, the KRAS positive result, which is present in a small amount of lung cancers, means I have a mutant gene which is a driver for lung cancer, pancreatic cancer and bowel cancer.  At my follow up in September 2024 I had a discussion with my Oncologist as I felt, with it being an important finding, these things should be disclosed and discussed with patients.  Unfortunately my Oncologist is "old school" and didn't think discussing things like biomarkers etc. was important and was surprised at my interest in the matter, I am one of those people who likes to know anything and everything.

Anyway, after a long discussion I asked about the new drug Sotorasib, this is a new drug taken orally at home, prescribed only for patients with the KRAS mutant gene who have a recurrence after initial treatment has failed.  It has been used in the USA for over ten years with a very good success rate, and, thankfully, it was given the go ahead by NICE here in the UK in 2022 for use on cancer patients in the NHS.  Sotorasib is in tablet form and is taken daily at home, therefore eliminating the need for hospital attendances and invasive treatments.  Apparently Sotorasib breaks down the walls of the cancer cells that KRAS has built and destroys the cells from within.  I found this very reassuring that if, god forbid, this cancer starts growing again I can have this new treatment and all it takes is one tablet every morning in the comfort of my own home.

Best wishes to all Two hearts

  • Hi  Sotorasib is a relatively new drug, I know I don’t need to tell you that, as I know you have posted about it before, but I think your post is very important to keep sharing news and experiences with these new drugs. What I have found shocking is the response of your oncologist! Of course it is important for you to know about the KRAS mutation! It is your body after all, so well done you for standing your ground and doing your own research.

    If you are not happy with the way your consultant has handled your diagnoses, then you can complain to PALS (Patient Advice and Liaison Service) there will be an office located at your hospital, or you can find it online. You can also ask to be referred to another on if you feel that you are not getting the adequate support from your current oncologist. 

    I wonder as well, if you have seen the Roy castle foundation. You can find some really great information there, and after doing a search myself I have seen a great blog about Sotorasib. Worth a look. 

    “Try to be a rainbow, in somebody else's cloud” ~ Maya Angelou
    Chelle 

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  • Hi, thanks for your reply.  Since I last saw that Oncologist last September I have found out he has left the cancer centre I go to for another cancer centre, apparently much to the delight of the rest of the staff because, I believe, he wasn't that nice to work with. I think the Oncologist just saw me as a women of a certain age and just talked over me rather than with me. On my first follow up with him after my treatment I had my son with me and, to be frank, all the results where given to my son, even when I asked questions, answers where given, but he was looking at my son when giving them.....that wound me up a bit. After we left my son said to me that he thought the Oncologist came across as a bit "anti women", which gave me a giggle. The nurse who chaperoned me said he was the same with the nurses, but fine with male registrars. 

    I do know about PALS, I was a personal secretary to two consultant surgeons in the NHS for 20 years, and all in all I worked in the NHS on a secretarial level for 30 years. Also my daughter in law is a Patient Services Manager in the NHS with involvement in PALS, but thanks for the advice anyway.

    Yes, I know I have posted about this before, but just thought maybe someone else on here may have the same, also I wanted to make people aware that a lung biopsy does not just detect what type of cancer it is, but the tissue sample is also tested for biomarkers.  Also thanks for info about the Roy Castle Foundation and the blog, I will look at that.

    Regards. Thumbsup

  • Thank you for posting, I believe knowledge is power, and the more we know about our condition, and treatment the better. It is good to highlight these things for people who are at the start of their journey. 

    I am glad to hear the consultant has moved on! I hope you have a better relationship with your new oncologist. 

    “Try to be a rainbow, in somebody else's cloud” ~ Maya Angelou
    Chelle 

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  • Not been on here for quiet a while. I am, in the incurable group, just thought i would pop in and I see the thread.

    I have KRAS positive ALK and EGF negative.

    Had to find my paper to check, i am just about to start Sotorasib  after Brain Radiotherapy.  So found the thread interesting. 

    Thank You.

  • Nice to see your name pop up here in the lung group  

    I hadn’t realised you had the KRAS mutation, I shall remember that as not many people in the group have it x 

    “Try to be a rainbow, in somebody else's cloud” ~ Maya Angelou
    Chelle 

    Community Champion badge
  • LOL I had forgotten I had it,  picked the right day to pop back in the lung group and I read that thread.

  • Hi, thanks for your reply. Along with being KRAS positive, I am also PDL-1 positive, although low at 5%, thankfully all my other drivers/biomarkers are negative.

    I am sorry to hear that you are about to start Sotorasib, as I'm assuming you have a recurrence, although I don't know your history, however, it is good to know that it is now available to patients here in the UK. 

    Please let us know how you get on regarding side effects etc., and very best wishes.

    PS....I am age 75 and this is a second cancer diagnosis, my first was breast cancer in 1991 treated with surgery and radiotherapy. Heart

  • Thanks for your reply, yes tumours have started to grow again,  in the lungs, i have been on no treatment since 2021,lung cancer can go to the brain, I had a tumour out September 2024 though scans show a tiny bit left, hence radiotherapy.

    I am glad I read your thread, i had forgot i had the mutation I was first diagnosed Marth 2016 so not done bad, and I am not going any where YET.

  • Hi there 

    my mum has nslc stage 4. She tested positive for kras 12c. She had tecentriq for 3 rounds but had to stop due to acute side effects. 1 year later she had brain Mets and was put on sororasib. 
    it has worked well for 12 months until recently. 
    there is a Facebook group called kras kickers and also one specifically for kras 12c- if that’s you. I found these to be useful. Good luck x