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

Kareno62 3 months ago

Hi KimLondon I’ve attached a link to a post from a couple of weeks ago

RE: Stage 4 Ascending Colon Cancer

If you comment on the post then it will bump it up the board or you could tag someone in by typing a ‘@‘ followed by the persons name (no space)

Take care

Karen x

Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm

KimLondon 3 months ago in reply to Kareno62

Oh thank you very much!

court 3 months ago in reply to KimLondon

https://www.bowelcanceruk.org.uk/about-bowel-cancer/advanced-bowel-cancer/treating-advanced-bowel-cancer/targeted-therapy/

It’s always good to know the targeted treatment options that are useful in Braf mutations . Interesting to see they are now mentioning immunotherapy. How things are changing .

Take care ,

Court

Helpline Number 0808 808 0000

KimLondon 3 months ago in reply to court

Hi Court, yes it is, the Oncologist mentioned that there were options down the line that were available on the NHS so I will read this, thank you so much. I feel like I am not a straightforward patient but I try very hard with everything and I hope that will help me!

court 3 months ago in reply to KimLondon

Plus if you can get surgical options that is a big plus !

Keep chasing the windows of opportunity that come to you .

Things are changing in cancer care and it is great to see .

Take care ,

Court

Helpline Number 0808 808 0000

Coffeeapple 2 months ago

Hi Kim I have just joined this forum so forgive me if I say anything you have already seen x I have stage 4 colon cancer I had a bowel resection and Oxaliplatin and capcitabine chemotherapy but then spread to my peritoneum and I was found to have the BRAF mutation. I had extensive surgery at a specialist centre in Basingstoke last year but unfortunately it has spread again to my lymph nodes. Because of the BRAF mutation I have been told chemo will not work for me so I have started immunotherapy which I have every 3 weeks I have had 8 so far and it seems to be keeping things at bay x unfortunately we BRAF babes are in a special club no one wants to join ! but we will be ok. Keep fighting x

KimLondon 2 months ago in reply to Coffeeapple

Hi Coffeeapple, great name! thank you for your message! I'm going to do an update on the post. Wow you had the HIPEC that's meant to be a big operation. I'm very sorry you have spread to the lymph nodes, it's an ongoing chess situation isn't it. How are you finding the immunotherapy? they were going to swap me to that but I'm now having an operation first- I'll update the post as I said. It's good to meet you though we wish it was in another situation but everyone is so nice, you keep fighting too x

KimLondon 2 months ago

I thought I would just update this. I'm now having surgery very soon on the bowel and ovarian stuff- very lucky to be able to have surgery. My team have been wonderful. The chemo had appeared on the CT to be working on the liver well and the bowel quite well but not the ovary/ krukenberg which has doubled in size so hence surgery. Next steps after that. One thing at a time.

Coffeeapple 2 months ago in reply to KimLondon

Hi Kim the cytoreductive surgery and HIPEC were hard but the team were amazing they removed my tubes and ovaries as the felt it would spread there next x I hope your surgery goes well. Will be sending healing thoughts. Immunotherapy is a breeze compared to chemo little or no side effects just hope it keeps things at bay x will be thinking of you x

court 2 months ago in reply to KimLondon

Great to hear this KimLondon . Reducing the tumour burden through surgery then dealing with the liver sounds a good plan .

I take it they will get you in as soon as a theatre slot / recovery bed is available.

Wishing you every success and a smooth recovery .

Court x

Helpline Number 0808 808 0000