any peeps with BRAF mutation on here?

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Zig2017
Posts: 59
Joined: Tue Sep 26, 2017 12:26 pm

any peeps with BRAF mutation on here?

Postby Zig2017 » Thu Nov 23, 2017 2:13 pm

Hi - was just wondering if there are any BRAF mutation colon cancer patients on this forum. My husband is currently enrolled in the BEACON trial Phase III at Sloan Kettering. It has 3 arms to the trial - one is a control arm, one has two drugs used to target BRAF and MEK inhibitor, and another arm has the three drug combo used to target EGFR, BRAF and the MEK signaling pathway. He starts Tuesday Nov. 28th and was randomized to get the 3 drugs Encorafenab, Binimetinib, Cetux (spelling might be wrong, sorry). Dr. Rona Yaeger is heading it up. I will keep updating this line so people can see how it goes.

Would love to hear from anyone who has been dealing with this particular mutation, and what therapies are working for you. Standard chemo (FOLFOX) didn't help him, but we are very hopeful about this clinical trial he is on. They've come a long way with this, and the trial sounds like a game changer.

I hope all of you are well, and that your therapies are keeping your cancer in check. Doesn't seem like there are a lot of people with this mutation.

All The Best,
Mrs. Ziggy
Hubby stage 3C June 2017
MSS BRAF Mutation
18 LN positive
Adenosquamous CC
12 FOLFOX
Right Hemicolectomy
11/08/17 numerous nodules and lymph nodes throughout chest and abdomen. Stage IV.
11/2017 moved care to Sloan clinical trial for BRAF mutation

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Robino1
Posts: 227
Joined: Fri Aug 11, 2017 12:09 pm
Facebook Username: Robin.lawthers
Location: Florida

Re: any peeps with BRAF mutation on here?

Postby Robino1 » Thu Nov 23, 2017 3:07 pm

At my consultation with the oncologist team at Penn Presbyterian Tuesday, I found out I have the BRAF V600E mutation. So far my regular chemo is working well. I've done 9 sessions.

I will be following your husbands progress closely. My team at Penn know that I am willing to travel to get on a trial. As of now, no trial since it is responding to chemo so well.

Please do keep this thread updated. I am extremely interested.

I wish all the best for your husband.
Last edited by Robino1 on Thu Nov 23, 2017 3:58 pm, edited 1 time in total.
At 54 2014 1st colonoscopy colon cancer detected.
Colon resect right ascending
margins clear. No chemo Stage II
2017
Distended abd, pain in intestines.
CT scan shows seeding
Ascites
Lap diag - cancer on the omentum
CEA 217
CEA 219
PET cancer on the omentum, susp activ right abdomen
FOLFOX started 6/17
CEA 202
Not genetic
8/29/17 CT scan showed excellent melting of the tumor. Chemo is working!
Ascites is gone
CEA: 9/30/17 -109; 10/12/17 - 99.1; 11/4/17 - 90.7; 11/30/17 - 70.7
BRAF V600e mutation :(

Zig2017
Posts: 59
Joined: Tue Sep 26, 2017 12:26 pm

Re: any peeps with BRAF mutation on here?

Postby Zig2017 » Thu Nov 23, 2017 3:36 pm

Thanks Robino I wish the best for you as well. I will keep the post up with what’s happening S/E wise and any reports of how Mr. Ziggy is responding. I want to help others out there who might have this BRAFV600e mutation. I’m beyond thrilled your chemo is working!
Hubby stage 3C June 2017
MSS BRAF Mutation
18 LN positive
Adenosquamous CC
12 FOLFOX
Right Hemicolectomy
11/08/17 numerous nodules and lymph nodes throughout chest and abdomen. Stage IV.
11/2017 moved care to Sloan clinical trial for BRAF mutation

Zig2017
Posts: 59
Joined: Tue Sep 26, 2017 12:26 pm

Re: any peeps with BRAF mutation on here?

Postby Zig2017 » Thu Nov 23, 2017 3:41 pm

Before we start the trial let me put in current tumor markers. I will then put in side affects from his chemo after Tuesday. The two drugs, ENCO and BINI are pill form I believe and the CETUXAMAB is infusion. More info to come as I have it.
CEA: 1,807.7
CA19-9: 132,458 (not a typo, checked w/onc)
Be well,
Mrs. Ziggy
Hubby stage 3C June 2017
MSS BRAF Mutation
18 LN positive
Adenosquamous CC
12 FOLFOX
Right Hemicolectomy
11/08/17 numerous nodules and lymph nodes throughout chest and abdomen. Stage IV.
11/2017 moved care to Sloan clinical trial for BRAF mutation

Pat
Posts: 21
Joined: Fri Jan 15, 2016 6:21 pm
Facebook Username: Pat Henderson Sins
Location: Southern California

Re: any peeps with BRAF mutation on here?

Postby Pat » Sat Nov 25, 2017 9:51 pm

I too am BRAF V600e. I finished FOLFOX Aug 2016 and so far have been NED. I am interested in your adventure and appreciate your willingness to share. Thanks
57 yr old. Dx 9/2015, Stage IIIc T4aN2bM0 BRAF/V600e
10/2015 Right Hemicolectomy
High Grade, poorly differentiated Adenocarcinoma of the Hepatic Flexure
25 of 30 lymph nodes cancerous extranodal extension
Barrett's Esophagus
11/2015 Folfox 12 cycles stopped 3x for month each due to low blood counts
7/30/2016 - finally finished Folfox
9/15/2016 - Clear colonoscopy, 1 sessile polyp
9/7/2017 - clear colonoscopy, next due in 3 yrs

Zig2017
Posts: 59
Joined: Tue Sep 26, 2017 12:26 pm

Re: any peeps with BRAF mutation on here?

Postby Zig2017 » Sun Nov 26, 2017 11:18 am

Hi Pat! I’m happy that your treatment worked that is encouraging! I wanted to share his experience on this trial so people can see side effects etc. please keep in mind that this is one individuals experience and each person is different. I hope all the best for you and continued success! Mr. Ziggy and I are very encouraged with the strides they are making on this subset of colon cancer, and we are hopeful! Love and blessings to you, Mrs. Ziggy.
Hubby stage 3C June 2017
MSS BRAF Mutation
18 LN positive
Adenosquamous CC
12 FOLFOX
Right Hemicolectomy
11/08/17 numerous nodules and lymph nodes throughout chest and abdomen. Stage IV.
11/2017 moved care to Sloan clinical trial for BRAF mutation

Zig2017
Posts: 59
Joined: Tue Sep 26, 2017 12:26 pm

Re: any peeps with BRAF mutation on here?

Postby Zig2017 » Tue Nov 28, 2017 4:25 pm

Interesting day. Mr. Ziggy and I got here at 7:30 am for labs ekg and such. He got his pills. He will be taking 4 encorafenib in the morning, with 3 binimetinib. Evening he takes binimetinib again (3). So far he’s had multiple blood draws before and after drugs are administered. They want to see how body metabolizes the drugs. Side effects aren’t bad (yet). We will see tonight. Be well! Mrs. Ziggy.
Hubby stage 3C June 2017
MSS BRAF Mutation
18 LN positive
Adenosquamous CC
12 FOLFOX
Right Hemicolectomy
11/08/17 numerous nodules and lymph nodes throughout chest and abdomen. Stage IV.
11/2017 moved care to Sloan clinical trial for BRAF mutation

User avatar
Robino1
Posts: 227
Joined: Fri Aug 11, 2017 12:09 pm
Facebook Username: Robin.lawthers
Location: Florida

Re: any peeps with BRAF mutation on here?

Postby Robino1 » Tue Nov 28, 2017 6:22 pm

I am sooo rooting for a positive response for your husband! Keep on keeping us posted on his progress. {{{ Hugs and love }}}
At 54 2014 1st colonoscopy colon cancer detected.
Colon resect right ascending
margins clear. No chemo Stage II
2017
Distended abd, pain in intestines.
CT scan shows seeding
Ascites
Lap diag - cancer on the omentum
CEA 217
CEA 219
PET cancer on the omentum, susp activ right abdomen
FOLFOX started 6/17
CEA 202
Not genetic
8/29/17 CT scan showed excellent melting of the tumor. Chemo is working!
Ascites is gone
CEA: 9/30/17 -109; 10/12/17 - 99.1; 11/4/17 - 90.7; 11/30/17 - 70.7
BRAF V600e mutation :(

Zig2017
Posts: 59
Joined: Tue Sep 26, 2017 12:26 pm

Re: any peeps with BRAF mutation on here?

Postby Zig2017 » Tue Nov 28, 2017 6:44 pm

Thanks Robino! I wish only the best for you as well! We’re exhausted and still here at 6:45pm but once this is done he’s good to go. Just a lot of tests and blood draws for first time. We can go once a week to Basking Ridge location for infusion, then monthly to city for check up and chemo drugs. I will keep you posted. This is a commitment!
Hubby stage 3C June 2017
MSS BRAF Mutation
18 LN positive
Adenosquamous CC
12 FOLFOX
Right Hemicolectomy
11/08/17 numerous nodules and lymph nodes throughout chest and abdomen. Stage IV.
11/2017 moved care to Sloan clinical trial for BRAF mutation

Alessandria
Posts: 37
Joined: Wed Apr 06, 2016 3:18 am

Re: any peeps with BRAF mutation on here?

Postby Alessandria » Fri Dec 01, 2017 2:11 pm

Hi there, wishing you all the best with the trial. I’ll keep an eye out for your updates.

I’m stage 4 braf, para-aortic nodes. I had folfoxiri and avastin, then chemo-rad to the node area. All finished Oct 2016 and so far no recurrence...

Keeping everything crossed it stays that way!!

Zig2017
Posts: 59
Joined: Tue Sep 26, 2017 12:26 pm

Re: any peeps with BRAF mutation on here?

Postby Zig2017 » Sun Dec 03, 2017 9:43 am

Welcome Alessandra! Sorry I’ve been MIA for a couple of days, I wanted to see first how Mr Ziggy is responding to meds. Alessandra that is an awesome combo and I’m beyond thrilled it’s working!! Keep it going!

Mr. Ziggy takes 3 of the BINI and 4 of the ENCO drugs in the morning, symptoms are being a little whoozy but by afternoon he’s ok. He takes 3 of the BINI at 9:45 at night, there’s a 10-14 hour time frame with these drugs so he is on a schedule. He goes for his Cetuximab infusion on Monday at Basking Ridge location. Outside of the first day with some vomiting, he’s been ok on it. It’s a matter of tweaking his meds for nausea, heartburn, etc. we are getting there on those. A little more loose stool, but he’s eating ok and taking smaller, more frequent meals. We go for another CT in January to see response. I want to add that one of the drugs can cause skin rash, so oncologist prescribed an antibiotic to take prophylacticly to avoid it. Also very dry skin so drinking more water. In the meantime, he’s got more tumor burden, with sub-cutaneous mets on stomach area that can be felt. Also on scalp. Hopefully this knocks it back quickly, but drugs take time to work. He’s been a real trooper in all of this. I will say so far Sloan has been excellent in his care, and I’m glad we’ve gotten on the trial. Strict protocol for a trial obviously and it is a commitment. Blessings to all, and more to follow! My love to all, Mrs Ziggy.
Hubby stage 3C June 2017
MSS BRAF Mutation
18 LN positive
Adenosquamous CC
12 FOLFOX
Right Hemicolectomy
11/08/17 numerous nodules and lymph nodes throughout chest and abdomen. Stage IV.
11/2017 moved care to Sloan clinical trial for BRAF mutation

Zig2017
Posts: 59
Joined: Tue Sep 26, 2017 12:26 pm

Re: any peeps with BRAF mutation on here?

Postby Zig2017 » Sun Dec 03, 2017 9:50 am

Robino and Pat I’m also thinking of you and praying you’re both doing great today. As a wise lady once said to me, “make it a great day”! Love, Mrs Ziggy
Hubby stage 3C June 2017
MSS BRAF Mutation
18 LN positive
Adenosquamous CC
12 FOLFOX
Right Hemicolectomy
11/08/17 numerous nodules and lymph nodes throughout chest and abdomen. Stage IV.
11/2017 moved care to Sloan clinical trial for BRAF mutation

Zig2017
Posts: 59
Joined: Tue Sep 26, 2017 12:26 pm

Re: any peeps with BRAF mutation on here?

Postby Zig2017 » Wed Dec 06, 2017 8:23 pm

Hi everyone just wanted to give an update. Second infusion and the pills seem to be going well with little side affects except for some eye blurring and occasional heartburn. Pepcid helps with that. Back to Sloan on Tuesday for infusion and EKG stuff. Hope everyone is having a good week! Love, Mrs Ziggy
Hubby stage 3C June 2017
MSS BRAF Mutation
18 LN positive
Adenosquamous CC
12 FOLFOX
Right Hemicolectomy
11/08/17 numerous nodules and lymph nodes throughout chest and abdomen. Stage IV.
11/2017 moved care to Sloan clinical trial for BRAF mutation

User avatar
Robino1
Posts: 227
Joined: Fri Aug 11, 2017 12:09 pm
Facebook Username: Robin.lawthers
Location: Florida

Re: any peeps with BRAF mutation on here?

Postby Robino1 » Thu Dec 07, 2017 8:21 am

Thank you for the update. I've been thinking of you both. :)
At 54 2014 1st colonoscopy colon cancer detected.
Colon resect right ascending
margins clear. No chemo Stage II
2017
Distended abd, pain in intestines.
CT scan shows seeding
Ascites
Lap diag - cancer on the omentum
CEA 217
CEA 219
PET cancer on the omentum, susp activ right abdomen
FOLFOX started 6/17
CEA 202
Not genetic
8/29/17 CT scan showed excellent melting of the tumor. Chemo is working!
Ascites is gone
CEA: 9/30/17 -109; 10/12/17 - 99.1; 11/4/17 - 90.7; 11/30/17 - 70.7
BRAF V600e mutation :(

Zig2017
Posts: 59
Joined: Tue Sep 26, 2017 12:26 pm

Re: any peeps with BRAF mutation on here?

Postby Zig2017 » Thu Dec 07, 2017 1:08 pm

Hi Robino how are you doing? Since there’s few of you, I think of you frequently and hope your still doing well with your own treatments. All my best, Mrs Ziggy
Hubby stage 3C June 2017
MSS BRAF Mutation
18 LN positive
Adenosquamous CC
12 FOLFOX
Right Hemicolectomy
11/08/17 numerous nodules and lymph nodes throughout chest and abdomen. Stage IV.
11/2017 moved care to Sloan clinical trial for BRAF mutation


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