BRAF

Hi Court- Thank you so much- I'm having the surgery next week- I needed the gap from chemo to surgery x

Thank you so much for your kind words- it's in a week and half so not long to go now! thinking of you too x

Hi there, both of you. Hope all is well. I also have secondary in the peritoneum with BRAF. I have chemo lined up but was reading about studies that talk about trametinib, dabrafenib and cetuximab. 

Wondered if anyone had experience or heard anything of this treatment? Seems to have had good results in the case studies. 

I had wanted HIPEC but with BRAF maybe I should look at other options. 

Hi Cyclone, I’m very sorry about everything, but it’s good we have this community and can try and help each other but of course we all wish we weren’t here.

i actually didn’t know about trametinib and danrafenib, cetuximab seems to be used with other drugs too. Those 2 sound very promising and I can see from googling there are trials so thank you so much for bringing this to my attention but I’m sorry at the moment I don’t know more, like you I’m relatively new to this all. I’ll definitely do more research and I’m not seeing my team for 2 weeks- maybe you could ask your team too but I know sometimes it’s hard to get through all the questions I have! 

what are your current treatments? I’ve been on Folfox but changing to folfoxiri. 

I know Court’s Mum had hipec, I think the places that provide that surgery are expert and perhaps they can advise. I’m a member of the Breaking BRAF group on Facebook and I know people on there are all BRAF and many have had hipec. It might be good to join there, everyone is very nice and more knowledgeable than me at the moment- though I’m learning.

i know it’s really hard to stop your mind racing too, I had that a lot after my recent surgery, so hope you’re okay xx

Hello I wrote a long reply which seems not to have worked, so I’m testing this now!

Okay I’ve had the same issue that it won’t post a long reply, it must be a bug I will try tomorrow sorry! 

when they told me about Braf it went straight over my head. Then I saw the term here and it sounded familiar so confirmed it.  

I was going to have surgery but they said HIPEC surgery would be an option. Then the decision to have chemo first was made. Has taken time but finally going to start treatment 

Away from home atm so not sure exact ingredients of chemo but it is a long list. I remember it includes fluorouracil and Irinortecan. About to start it. Highly toxic brew so hopefully I can cope with it. 

Will be doing more research. Seems to be very poor prognosis but at the same time read there are rapid development in treatments. So worth trying to buy as much time as possible. 

Hope we are part of a miracle Club. 

Hello! Trying again- I see my post did work it just took ages to appear. It sounds like you might be starting folfori or folfoxiri chemo, I am just about to start folfoxiri having had folfix first then an operation just recently to take out my primary and a secondary. Having chemo first is often a good thing as it shrinks disease so I wouldn’t feel negative about it, though the constant changing is hard I know.

Yes I try to view it like that, amazing advances are happening all the time and meanwhile just do everything we can to keep as well as possible. Plus there are some really good stories out there.

but yes I hope we are in miracle club too.

Keep in touch xx

That is it. Folfoxiri modified. 

Sounds horrific. Hope is not as bad as the warnings suggest. 

Will update after it starts. 

Hi Cyclone 

When my mum was first diagnosed I used to be in touch with a young guy who just had Hipec surgery . He is going great fifteen years later and became a dad after surgery . Sent a lovely photo of himself hillclimbing and enjoying life .

Take care ,

Court