Stage 4 bowel cancer

Elisa76

BRAF mutation

Hi everyone,
Today my husband had FOLFIRI-cycle 2 and we found out the biomarkers results: KRAS wild type
but
BRAF mutated.
:(
So goodbye to the option of Cetuximab and , despite having private care, unfortunately Avastin il also not an option because my husband has a blood clot in his right leg and Avastin increases the risks if blood clot even more.
I understand from literature that biomarkers really make a difference in terms of long term survival.
The oncologist said that the chances that FOLFIRI will work are 50/50.
I understand that hope start from inside so I must find somewhere inside me meanwhile I was wandering if anybody here is on FOLFIRI only and FOLFIRI only has worked well for him/her so far?
Thank you in advance.
Elisa

HH79

Hi @Elisa76 I’m the same KRAS wild & BRAF.
Couple options - I was told Oxilaplatin works particularly well with BRAF so I had Folfoxiri which is a triplet ie Folfiri & Folfox combo - Oxilaplatin, irinotecan & 5FU.
One thing to factor in- do you know if he’s MSS or MSI?? If he is MSI, Keytruda is an option..most are MSS.
(I’m sounding clever - I’m not! The v clever BRAF folk are @soph86 and @david watt!) they may be off at the most Christmas breaks etc

There is a trial at Hammersmith called Beacon 3 worth looking at.

Also a book, F&&& you csncer’ By Deborah James worry getting good advice and follow her ‘bowelbabe’ on Fb / insta. She is BRAF and just starting a brand new triplet via Marsden.
A few of us aren’t eligible for Beacon 3 as and when Folfox fails as we have had an injection for anti sickness as part of Folfox regimes ... I would defo hammer it with some trusty Oxilaplatin but look into the injection... I’m hoping @soph86 will remember the name! :x:

Polly 1

What fantastic information @HH79 This is where this forum is such a help. I read @Elisa76 's post and thought no sorry but I can't help here and then I read your post and I thought what a lovely helpful reply you were able to send.
We are all in this together arent we - sometimes I think we know more than the professionals!

soph86

Hi @Elisa76 yes I am braf. @HH79 covered a lot of it though. I was on folfoxiri but I didn’t have any anti sickness injections so can’t help there only neulesta injections to increase wbc count.

I couldn’t have Avastin to start with because I had a small bowel perforation so we had to wait six months. I was on folfoxiri to blast the bugger away. I started on folfox for six rounds but moved to the Marsden where they put me on folfoxiri as the intention was to do this with Avastin (folfoxiri plus Avastin is about as big and nuclear as it gets.). Anyway my bowel perforated after the first folfoxiri so it was time for plan b. Folfoxiri alone for 5 (didn’t need the 6th as had a complete metabolic response and it was breaking me).

Took a six week break over the summer but during that time my tumour markers started to rise and I don’t really like doing nothing (particularly with BRAF) so we decided on capcetabine with Avastin (six months since bowel perforation so now eligible). This is what I’m on now.

The triplet Deborah is on is pantitumumab, dabrafenib and trametinib. It’s sort of a makeshift beacon triplet option because the drugs on beacon are not available outside of the trial. The Marsden have been trying hard to get them but pharma won’t play ball. This is all done privately though. None of this is nice approved (you will sense my frustrations with this. Even though I’m private I hate the current system with a passion!).

Msi/mss status is important because as already said it may make you eligible for keytruda (again this isn’t nice approved yet so you will need insurance or a lot of money but imo this should be fast tracked through as there is an argument that msi patients should be having this as first line treatment.).

If your husband isn’t responding it could be because he is heavily mutated therefore a tumour mutation burden test could be useful. There is a lot of research out there which suggests they heavily mutated mss patients may also respond to immunotherapy.

Immunotherapy though is by and large only suitable for a very small minority of crc patients at present.

Hope this helps a bit
:x:

HH79

Thank you so much reply @soph86 and also clarifying the trial. Hope you’re ok Mrs :x::x:

soph86

Yeah I’m in better spirits thanks @HH79. Going back to work today left me with little option but to snap out of it!!!! :x:

Elisa76

@soph86
Thank you.. a lot to take in!
I got lost in regard of the anti-sickness drugs ( my husband had 2 cycles of FOLFIRI only and he was given anti-sickness injections too: does this mean that he cannot have FOLFOXIRI in the future?).
Anyway the oncologist did not mention MSI and MSII ( I was upset about the BRAF mutation and my mind got blank and I didn’t even think of asking about the other biomarkers).
Surely I will ask about them thank you.
How are you now?
Thank you for the advice.
Elisa

quote]Quote from @soph86:
Hi @Elisa76 yes I am braf. @HH79 covered a lot of it though. I was on folfoxiri but I didn’t have any anti sickness injections so can’t help there only neulesta injections to increase wbc count.

I couldn’t have Avastin to start with because I had a small bowel perforation so we had to wait six months. I was on folfoxiri to blast the bugger away. I started on folfox for six rounds but moved to the Marsden where they put me on folfoxiri as the intention was to do this with Avastin (folfoxiri plus Avastin is about as big and nuclear as it gets.). Anyway my bowel perforated after the first folfoxiri so it was time for plan b. Folfoxiri alone for 5 (didn’t need the 6th as had a complete metabolic response and it was breaking me).

Took a six week break over the summer but during that time my tumour markers started to rise and I don’t really like doing nothing (particularly with BRAF) so we decided on capcetabine with Avastin (six months since bowel perforation so now eligible). This is what I’m on now.

The triplet Deborah is on is pantitumumab, dabrafenib and trametinib. It’s sort of a makeshift beacon triplet option because the drugs on beacon are not available outside of the trial. The Marsden have been trying hard to get them but pharma won’t play ball. This is all done privately though. None of this is nice approved (you will sense my frustrations with this. Even though I’m private I hate the current system with a passion!).

Msi/mss status is important because as already said it may make you eligible for keytruda (again this isn’t nice approved yet so you will need insurance or a lot of money but imo this should be fast tracked through as there is an argument that msi patients should be having this as first line treatment.).

If your husband isn’t responding it could be because he is heavily mutated therefore a tumour mutation burden test could be useful. There is a lot of research out there which suggests they heavily mutated mss patients may also respond to immunotherapy.

Immunotherapy though is by and large only suitable for a very small minority of crc patients at present.

Hope this helps a bit[/quote]

soph86

Hi @Elisa76 no folfoxiri is still very much an option for him if his oncologist considers it appropriate. The injections do not affect this.

The injections may affect his eligibility to go on the beacon trial (targettes triplet therapy for braf) but im not sure. He wouldn’t be eligible for this now in any case as the patient needs to have failed first line treatment.

Trials can be very tricky to get on for a whole plethora of reasons so I wouldn’t worry about that at this stage. Right now I would say the focus should be on staying as healthy and active as possible so as to withstand the side effects of chemo. Msi mss status is def worth investigating though.

:x::x: