BRAF

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Hello everyone, I've message her recently but to update (I think I need to do my profile with more detail!) I have primary bowel cancer that's spread to my ovary (already had one removed in the past- my cancer was found in routine screening ) and liver- the current plan is I'm having Folfox to shrink the primary mass and hopefully other bits then have surgery to remove the bowel and ovarian stuff- then liver surgery to remove the liver mets (or poss the other way aroudnd surgically) we'd been awaiting the gene testing and yesterday the team updated me that I have a BRAF mutation which I understand 10% of people have- apparently being a younger woman (early 40s) and it being right sided is all quite classic (though I also read older women online so maybe it's just more women overall). I can find stuff about BRAF online but am obviously always wary of Dr google; I cannot find very much on the forum here about BRAF and bowel cancer- I see that there is quite a lot for BRAF and melanoma which is obviously not me. Does anyone have any experience of this? I understand it means chemo sometimes works less well, hence they are thinking of changing my cocktail of chemo and or it seemed like the previous mention of longer chemo for up to 6 months prior to surgery might be less likely. As ever the hospital have been wonderful and are ordering a CT to see how the chemo is working so far even though it's quite early (had 3 infusions so far). I have my next infusion this weekend so I'll have had 4 Folfox when I have the CT. Any personal experience or links gratefully received. Thank you in advance and I hope everyone is having a good week and doing okay in themselves. Kim 

  • Hi Court, 

    Had my heart set on Hipec but now read it is not as effective with BRAF mutation. It may help some, have to wait for the doctors advice. Braf is a challenge it seems. 

  • Hello, I just came across this board. I am from the US and I have MCRC that has spread to my Peritoneum and I have the BRAFv600e mutation. I went through CAPOX then Folfiri with Avastin and now Encorafenib with a Panitumumab infusion (Targeted Therapy)  This treatment worked really well CEA went from 178 to 5 in a couple months but it only lasted about 7-8 months. I am now enrolled in a clinical trial for a PIPAC procedure. This procedure is common in Europe for over a decade. I am hoping it reduces the tumors in my peritoneum. There is an interesting trial now on going for BRAF with MS-Stable patients. It combines  Encorafenib and Panitumumab with an immunotherapy (Optivo). They believe that the targeted therapy above makes BRAF MS Stable patients look like they are MS-I(Instable) and it "primes" it for immunotherapy. This could be a game changer for BRAF patients.    SWOG S2107: Randomized phase II trial of encorafenib and cetuximab with or without nivolumab for patients with previously treated, microsatellite stable, BRAFV600E metastatic and/or unresectable colorectal cancer. | Journal of Clinical Oncology (ascopubs.org)

    Good Luck!

  • This is really interstellar  . I have not seen this trial before .

    It’s interesting to see immunotherapy with microsatellite stable disease . 

    Hope it all goes well with your treatment. That’s an amazing CEA drop !

    Court 

    Helpline Number 0808 808 0000

  • Hi- this sounds amazing! I was not aware of this trial- I am MSS stable so this could be a game changer- I hope it moves forward quickly- thank you so much 

  • Thank you for sharing. If we can buy a little more time, then more options may become available.

    I am still well. Much to my oncologists surprise. They cannot be expert on everything so will try and get the doctor some evidence for down the track. So thanks for the lead. 

    I just recently heard of PIPAC.  Have not looked for results as yet. But sounds logical and promising. 

  • I had tumour removed from bowel and am currently on folfox chemo. My oncologist told me molecular profiling had identified rats wild type braf v600 mutant. I didn’t know what that meant. But reading this chat am I right in thinking it means chemo is less effective? Please advise 

  • Hi 100kt. 

    I am not familiar with wild type. I believe there are more treatment options for wild types. Don't quote me though. 

    Not having the wild type I tend to skim over references. So hopefully someone else can help. 

    Chemo is not as effective for secondary mets to peritoneal cavity. With or without a mutation. So add a mutation that also resists chemo makes for a real challenge. 

    Good luck and hope someone chimes in with more relevant information. 

  • Hi 100KT, you've probably found out by now but wild type is the normal gene, no mutation.