BRAF V600E MSS status-Am I screwed? I feel it-

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behconsult
Posts: 205
Joined: Fri Jul 04, 2014 4:53 pm

BRAF V600E MSS status-Am I screwed? I feel it-

Postby behconsult » Thu Mar 16, 2017 1:49 pm

I am getting a second opinion at Cleveland Clinic next Tuesday and just got my records from James Cancer in Columbus. I just discovered via my paperwork I am BRAF V600E MSS. I have been pushing my onc for RFA for a couple lung nodules and headed up. I didn't know this piece of information.

I am still able to work and need to as I am self-employed. The info I have on this particularly genetic piece is not good. Anyone have any good survival/longevity stories for this piece. I am emotionally drained at the moment as I went from hoping for RFA to being NED to discovering, I'm kinda screwed. Bob
Stage 3B Age 52
T4; 2/16; spot on perit
Resctn 6/9/2014
Folfox strt 7/2014. 6 of 12 tx
Chemo induced DM2
Pet 4 mets to lung (1 cm, 6 mm) Xeloda/Avastin 9/16 to present.
Cryo-ablation to three spots- Collapsed lung/chest tube 5/17. One more spot to go.

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GrouseMan
Posts: 714
Joined: Mon Aug 12, 2013 12:30 pm
Location: SE Michigan USA

Re: BRAF V600E MSS status-Am I screwed? I feel it-

Postby GrouseMan » Thu Mar 16, 2017 5:10 pm

Don't despair, there are things that you may be able to do. This particular mutation can be found in colon cancer, but is also well know in melanoma. See the following link.

https://www.mycancergenome.org/content/ ... ma/braf/54

and

https://www.mycancergenome.org/content/ ... r/braf/54/

If your oncologist is a forward thinking doctor, and he can talk your insurance into it, they may be able to treat you with a drug that works well with melanoma's, having this same mutation. Perhaps a combination of one of those drugs and maybe a checkpoint inhibitor to make it go from MSS to more MSI like, might do the trick..

Good Luck

GrouseMan
DW 53 dx Jun 13
CT mets Liver Spleen lung. IVb CEA~110
Jul13 Sig Resct
8/13 FolFox + Avastin 12Tx mild sfx
Ongoing 5-FU Avastin every 3 wks.
CEA: 9/23/13 53 10/21/13 22 12/2/13 8 1/13/14 3.7 8/12/14 2.3 7/2/15 4.0 8/21/15 5.9
7/7/14 CT Can't see the spleen Mets Stable until... CEA up
8/16/15 CT new abdominal spots. Now Iri, 5-FU, Avastin every other week.
1/16 Iri, Erbitux and likely Avastin (Trial) CEA going >.
1/17 CEA up again dropped from Trial, Mets growth 4-6 mm in abdomen


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