any peeps with BRAF mutation on here?

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Robino1
Posts: 462
Joined: Fri Aug 11, 2017 12:09 pm
Facebook Username: Robin.lawthers
Location: Florida

Re: any peeps with BRAF mutation on here?

Postby Robino1 » Sat Jan 06, 2018 9:13 am

Don't apologize for flipping out. {{{{{hugs}}}}}

I wish I had some encouraging words to pull out of my back pocket but all I got right now is an ear and a shoulder to lean on.

Hubby told me the other day that he is so frustrated that HE can't do anything to help this crap leave my body. Caregivers are special people. They are our cheerleaders and our support system. Sometimes all we want is a hug and to be held when we cry.

I will keep praying for you both. Cancer sucks
At 54 2014 1st colonoscopy colon cancer detect
Colon resect margins clear. No chemo Stage II
2017
Distend abd, pain in intestines.
CT scan seeding & Ascites
Lap diag - cancer on the omentum
CEA 217; 219
FOLFOX started 6/17
CEA 202
8/29/17 CT melting of tumor.
Latest CT scan shows 2 new tumors and return of ascites.
CEA: (2017)9/30 -109; 10/12 -99.1; 11/4 -90.7; 11/30 -70.7; 12/14 -83.4; (2018)1/4 -73.3; 2/1-84.2; 89.2; 89.8; 88.5; 81.8: 93.5; 107; 119
BRAF V600e

Tim UK
Posts: 71
Joined: Fri Jun 12, 2015 1:05 am

Re: any peeps with BRAF mutation on here?

Postby Tim UK » Sat Jan 06, 2018 2:04 pm

Hi

I was on the same triplet combo (MEK / EGFR / BRAF) but with different drugs - see my footer. I got about 9 good months out of it in early '16 including a brief NED. When it seemed to stop working I was desperate ... but that was 18 months ago, and I've been on a new trial since Oct 16. I've been playing football (soccer ... I'm a Brit) with my 8 yo and his buddies today and give thanks for every day that I get to do stuff with my kids and family. There are other pathways out there. Unfortunately none of them seems to last as long as we'd like. Do you remember that 70s / 80s arcade game, Frogger? I feel like we're all that little frog, hopping from log to log ... before the current one sinks or gets to the edge of the screen. My trial is at the bottom ... of course it may not be right for you guys but perhaps worth a look.

My best wishes
Tim
https://youtu.be/qoQbY4A5RNA
05/15 L hemi-colectomy - robotic, laparoscopic
05/15 Dx st 3 T4N2M0 @43
kids: 11,7
BRAFm mucinous - KRASw
06/15 2 liver mets
06/15 CEA 9, CA19-9 400+
06/15 - 09/15 6 x FOLFOXIRI+Avastin
09/15 markers 4/50
10/15 drain-site met
11/15 CRS+HIPEC
1-8/16 BRAF therapy (dabrafenib, panitumumab, trametinib)
CEA;CA19-9: 1/16 16;650 | 2/16 3;690 | 3/16 1;36 | 4/16 2;46 | 5/16 1;29 | 6/16 1;42 | 7/16 2;44 | 8/16 3;72 and 4;135
8/16 progression (PET)
10/16 Trial: NCT02650713

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Robino1
Posts: 462
Joined: Fri Aug 11, 2017 12:09 pm
Facebook Username: Robin.lawthers
Location: Florida

Re: any peeps with BRAF mutation on here?

Postby Robino1 » Sat Jan 06, 2018 2:08 pm

Thank you for that :)

I have it bookmarked.

We should never give up and always continue to find a new path. Someday, one of these trials WILL work. That will be a day to celebrate :D
At 54 2014 1st colonoscopy colon cancer detect
Colon resect margins clear. No chemo Stage II
2017
Distend abd, pain in intestines.
CT scan seeding & Ascites
Lap diag - cancer on the omentum
CEA 217; 219
FOLFOX started 6/17
CEA 202
8/29/17 CT melting of tumor.
Latest CT scan shows 2 new tumors and return of ascites.
CEA: (2017)9/30 -109; 10/12 -99.1; 11/4 -90.7; 11/30 -70.7; 12/14 -83.4; (2018)1/4 -73.3; 2/1-84.2; 89.2; 89.8; 88.5; 81.8: 93.5; 107; 119
BRAF V600e

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O Stoma Mia
Posts: 1353
Joined: Sat Jun 22, 2013 6:29 am
Location: Traveling abroad

Re: any peeps with BRAF mutation on here?

Postby O Stoma Mia » Sat Jan 06, 2018 3:51 pm

Zig2017 wrote:... I’m asking a lot of questions because yes I’m thinking ahead for after treatment ... so I’m getting my “ducks in a row” since he obviously won’t be on the trial forever.

The way I read the study protocol, there is first a 28 day "Safety Lead In" phase followed then by six 28-day treatment cycles with the triplet combo regimen. In other words, there are about 7 months worth of treatment altogether, and after that point in time this particular trial will be over.

If treatment was started in late November, then the trial will be over by the time summer rolls around. Is that how you see it?

If so, what contingency plans do you have for continuing some sort of treatment after June, since your access to these two experimental study drugs (encorafenib, and binimetinib) may be cut off after your participation in the trial ends?

Have you discussed this with you doctor?
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Zig2017
Posts: 139
Joined: Tue Sep 26, 2017 12:26 pm

Re: any peeps with BRAF mutation on here?

Postby Zig2017 » Sat Jan 06, 2018 5:42 pm

Robino thanks as always!

TimUK I will ask about these drugs after I hear what she says. You never know!

As for contingency plan. That’s why I have you guys to bounce ideas off of or suggestions. Like Tim in UK. I plan on asking her her next plan of attack and I keep reading. Look at all rp1954 has written! You guys rock and make me ask questions of the doc where normally I wouldn’t. She’s the scientist and I’m going to find out next steps. I will let you know what she comes up with. Hope it’s goid.
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
1/30/18 off clinical trial
2/2/18 one dose of Irinotecan
2/5/18 Hospitalization and hospice
2/16/18 came home from hospital and went home to his Lord at 1:10 pm

mhf1986
Posts: 134
Joined: Sat Mar 11, 2017 8:30 pm
Location: near DC

Re: any peeps with BRAF mutation on here?

Postby mhf1986 » Sat Jan 06, 2018 7:28 pm

Sending hugs Mrs Ziggy!

DH had pleural effusions about 11 months ago, after his surgery. The new oncologist picked up the problem on the first visit, not the Dr. we'd been seeing for 7 weeks. They drained both lungs, 1 each day, fairly easy out patient procedures. Enormous bags of fluid. After the draining, his appetite and weight picked back up and the tiredness wasn't so evident. Maybe that's causing Mr. Zig's sleeping? They can test the fluid for infection and give him the right antibiotics then too.

More Hugs,

M
Caregiver to DH, dx @ 50, mets to liver/lungs/lymphs, MSS, quad wild
10/16: CEA 114, partial blockage, left hemi, perm. colostomy
11/16: port in, FOLFOX+Avastin
4/17: CEA 11
6/17: CEA 15, 5FU+A only due to neuropathy
11/17: CEA 38, CAPOX+A
12/17: CEA 29
1/18: CAPOX caused hi bilirubin/bad hfs, back to FOLFOX+A
5/18: growth + ascites; 6.4 bilirubin, change to Vectibex/Irinitecan
8/18: .9 bilirubin, CEA 31, shrinkage/no ascites

Zig2017
Posts: 139
Joined: Tue Sep 26, 2017 12:26 pm

Re: any peeps with BRAF mutation on here?

Postby Zig2017 » Sat Jan 06, 2018 9:06 pm

MHF!! Hi!!
Yes, that is a good thought. Maybe that's why he's tired. I'll ask on Tuesday how much is there, it wasn't there before and they are wondering if infection? But new nodules are there too. I'm happy to hear your husband felt better after the draining. I'm sure it's hard on the breathing as well as your heart must have to work harder. He had a lot more fluid than Mr. Ziggy, but I'm sure any fluid in lungs would make you tired. Funny thing though, if it was an infection he's been on antibiotics for his skin rash. (Which cleared up). We'll see! xoxoxo

In the meantime, I hope hubby is feeling better - how do they stop the pleural infusions? Does the chemo help dry it up? Sorry dumb question. xo
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
1/30/18 off clinical trial
2/2/18 one dose of Irinotecan
2/5/18 Hospitalization and hospice
2/16/18 came home from hospital and went home to his Lord at 1:10 pm

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O Stoma Mia
Posts: 1353
Joined: Sat Jun 22, 2013 6:29 am
Location: Traveling abroad

Re: any peeps with BRAF mutation on here?

Postby O Stoma Mia » Sun Jan 07, 2018 12:12 am

Zig2017 wrote:...- how do they stop the pleural infusions? Does the chemo help dry it up? Sorry dumb question. xo

In my opinion, the highest priority right now is to deal with the pleural effusions as soon as possible, before breathng becomes difficult. Maybe not wait until Tuesday, but call the doctor before then.

https://en.wikipedia.org/wiki/Pleural_effusion
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Zig2017
Posts: 139
Joined: Tue Sep 26, 2017 12:26 pm

Re: any peeps with BRAF mutation on here?

Postby Zig2017 » Sun Jan 07, 2018 8:34 am

O stoma mia, you’re right. Get it small get it all. I’ll call today. He’s already weak and doesn’t move around much. It’s these nodules that are popping up everywhere. Looked at report again it seems the nodes are kind of stable but the nodules are growing in different places and there’s more of them. Maybe she won’t kick us off the trial, that’s my fear. But if it’s not working properly, then changes need to be made.
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
1/30/18 off clinical trial
2/2/18 one dose of Irinotecan
2/5/18 Hospitalization and hospice
2/16/18 came home from hospital and went home to his Lord at 1:10 pm

Zig2017
Posts: 139
Joined: Tue Sep 26, 2017 12:26 pm

Re: any peeps with BRAF mutation on here?

Postby Zig2017 » Sun Jan 07, 2018 8:37 am

What’s new bilateral renal striations? Is the meds affecting kidneys somehow? I’ll have to ask about that one too.
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
1/30/18 off clinical trial
2/2/18 one dose of Irinotecan
2/5/18 Hospitalization and hospice
2/16/18 came home from hospital and went home to his Lord at 1:10 pm

mhf1986
Posts: 134
Joined: Sat Mar 11, 2017 8:30 pm
Location: near DC

Re: any peeps with BRAF mutation on here?

Postby mhf1986 » Sun Jan 07, 2018 3:50 pm

Mrs Z,

I think DH's fluid was caused by lack of protein for 6 weeks after surgery, sepsis, and too much IV fluid for 2 weeks in the hospital. His legs swelled up so badly he could barely walk and the fluid also escaped into the space around his lungs, one of which had collapsed during surgery. The local doctors said they doubted he would recover and had written him off due to all the liver mets. My theory was that he didn't have this fluid problem before surgery so let's try fixing it. I made an appointment with Hopkins, rented a van that he could get into, and off we went in mid-Nov 16. They started him on chemo in late Nov and identified the lung draining needed. I started tracking protein input, bought Gatorade protein shakes (tastier than Ensure), made super hot chocolate, did leg massages, and by Christmas 16, the leg fluid was gone. The CT scans haven't shown so far (fingers crossed, next scan is Jan 15) that the lung fluid is back.

Please call and see if you can get him in about the lungs. The draining procedure isn't bad, we had a PA do it bedside while I sat there watching.
Caregiver to DH, dx @ 50, mets to liver/lungs/lymphs, MSS, quad wild
10/16: CEA 114, partial blockage, left hemi, perm. colostomy
11/16: port in, FOLFOX+Avastin
4/17: CEA 11
6/17: CEA 15, 5FU+A only due to neuropathy
11/17: CEA 38, CAPOX+A
12/17: CEA 29
1/18: CAPOX caused hi bilirubin/bad hfs, back to FOLFOX+A
5/18: growth + ascites; 6.4 bilirubin, change to Vectibex/Irinitecan
8/18: .9 bilirubin, CEA 31, shrinkage/no ascites

rp1954
Posts: 1337
Joined: Mon Jun 13, 2011 1:13 am

Re: any peeps with BRAF mutation on here?

Postby rp1954 » Sun Jan 07, 2018 7:07 pm

Zig2017 wrote:...He’s already weak and doesn’t move around much. It’s these nodules that are popping up everywhere.... it seems the nodes are kind of stable but the nodules are growing in different places and there’s more of them.

For us, what happened with the distant lymph nodes is that they would blow up, one by one, from small mm's to about +- 2 cm +-0.3 cm in under 2 weeks, maybe stably sized by chemo dose (e.g. first, smallest closest to inlet, largest furtherest on the drainage - don't know for sure).

Elevated CA19-9 often is associated with metastatic nodes. In our particular experience, the CA19-9 rise (at an inadequate chemo level) was later than the nodes' expansion and discreet CEA jumps, like a subsequent stem cell "infection". The CA199 rises were still fast and then first to stop and drop on an adequate dose of (non standard) anti-mutant components. The thing was that CA19-9 was actually easiest on 5FU+IVC+everything to control when we had a somewhat mutant killing formula, CA19-9 going from peak to baseline in ~6 weeks, but we couldn't reduce CEA level with this earlier formulation. These ~15 metastatic nodes were all in a single site, still usually considered inoperable (refused by most surgeons), removed with a "salvage surgery" 6+ years ago. Later, adding celecoxib and bigger D3 to our entire immuno 5FU formula- we flattened small CEA rises. I am concerned that the fluid drainage of an IV vitamin C, an anti-mutant component, might be a problem but IV C has been used as a diuretic tx. Also IV vitamin C and some kinds of supplements are often a literal pick-me-up for cancer patients. e.g. a bedridden patient plays golf the next day for one good day.

An earlier Olymphian member, Blake (Buckwirth), battling full blown lymph node mets got some relief and time going back to Folfox that he "had not yet exhausted" previously but it was a rough time. Our response was add more oral 5FU-LV (tamed the side effects at lower dose) and add other nicer, off-label stuff for the mutants, swing for the fence. Regular oncology often tries Folfoxfiri+Avastin maybe +gemcitabine too, for some overtime. The central technical problems are QoL while turning 5FU "on" with enough stuff, and the mutants "off".
watchful, active caregiver for stage IVb CC since early 2010. immuno"Chemo forever," for mCRC

Zig2017
Posts: 139
Joined: Tue Sep 26, 2017 12:26 pm

Re: any peeps with BRAF mutation on here?

Postby Zig2017 » Mon Jan 08, 2018 4:13 pm

Rp1954 didn’t think of that. Maybe he would be re-sensitized to the 5FU etc, because it didn’t work in the first place. He progressed on it. Maybe now he wouldn’t. With the high CA19-9 I’m wondering about mutation or hypoxia inducible factor(s). I will read and re-read what you wrote take notes and ask questions. We meet with her tomorrow and in for treatment. So weird.... almost like two different pathologies going on at the same time. Adenopathy stable, but nodular infiltration happening. Can’t ignore it so it will be addressed along with persistent lung issue that they think might be an infection. I need a naturopath on his team to go over all that you’ve told me. Need unconventional help here! Like a Hail Mary! Like you said “swing for the fence”.
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
1/30/18 off clinical trial
2/2/18 one dose of Irinotecan
2/5/18 Hospitalization and hospice
2/16/18 came home from hospital and went home to his Lord at 1:10 pm

rachel2017
Posts: 33
Joined: Tue Oct 17, 2017 9:17 pm

Re: any peeps with BRAF mutation on here?

Postby rachel2017 » Mon Jan 08, 2018 8:34 pm

Zig2017 wrote:I just looked at Mr Ziggy’s CT results. Thoracic nodes same, left lung has some pleural effusion now, infection?
More nodes in abdominal and pelvic. More of them and a little larger on ones that were there. I could seriously vomit right now. CEA came down 1600 points, but they didn’t run CA-19-9 which always goes up first on him. I suppose clinically that doesn’t matter since the CA19-9 was 132,458. No wonder he’s been vomiting more and sleeping all the time.

Oh my God. I just can’t right now. WTF is this stuff?!?!? Sorry... I’m flipping the f$&@k out right now and will have to pull it together. Sorry for potty mouth. Next mode of attack...


Mrs Zig, I am sorry about the progression. My mom have perio met too. She had very very aggressive progression during the first 4 round of chemo. I am still very painful and also very confused what we need to do in the next step. Your husband is in the best cancer center, and wish his situation will become better in near future. Please keeping update more information. I wish my mom can be treat in MSK as well. However, we just can't afford the cost of the treatment.
DM 63. 11/16 colonoscopy (high dysplasia)
1/17 laparoscopic,6.5X4X3cm. Stage II. No chemo.
6/17 abdo pain. CEA 52. CT paracolic nodule 1.4X1.9cm
7/17 pet CT. Ascending colon 1.4X1.1cm SUV 2.4; midline scar 0.9cm SUV3.1
KRAS G12D
8/16/-9/26/17 Folfox 4 rounds
10/6/17 CT numorous perio seedings. ascending one 7cm; midline one 5.7cm.
10/16-1/5/2018 Folfox/avastin; 1/12/18 CT reviewed Slight progression
Stop chemo

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O Stoma Mia
Posts: 1353
Joined: Sat Jun 22, 2013 6:29 am
Location: Traveling abroad

Re: any peeps with BRAF mutation on here?

Postby O Stoma Mia » Tue Jan 09, 2018 4:43 am

Good luck on your meeting with the doctor today.

Please ask the doctor about the pleural effusion issue. I think that this is important because this particular side effect was not listed on the original safety report issued by the manufacturer. Thus, it appears to be an exceptional condition that would require immediate attention.

The manufacturer's safety report based on the first 30 patients in the BEACON trial is given in the link below (see Table 5 in the report).


Binimetinib / Cancer
09/09/2017
BEACON CRC: Safety Lead-In (SLI) for the Combination of Binimetinib (BINI), Encorafenib (ENCO), and Cetuximab (CTX) in Patients (Pts) with BRAFV600E Metastatic Colorectal Cancer (mCRC)
Huijberts, et al.

http://www.arraybiopharma.com/index.php/download_file/275/


PS - I hope you can manage to keep warm today in this very cold weather!
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