New hope for BRAF mutation?

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Lele88
Posts: 10
Joined: Sun Mar 04, 2018 12:53 pm

New hope for BRAF mutation?

Postby Lele88 » Fri Mar 23, 2018 7:59 am

Hi all,

My mum was diagnosed with colon cancer stage 4 2 months ago and yesterday we have been told that she is a BRAF mutant.

Reading in the internet freaks me out completely .."most aggressive one" .."short survival".. etc I have read that there is a lot of Research going on for this small group of patients, but in Germany, where we are based, there is nothing on the market yet + only in studies certain medications is tested.

Has anyone any experience with the braf mutuation with recent knowledge? Any help on this topic highly appreciated.

She currently gets Folfoxiri with Panitumumab.

I want to ask the doctor on Monday as well whether Panitumumab is still the right choice considering she is braf mutated.

Regards,
Lea

NHMike
Posts: 2515
Joined: Fri Jul 21, 2017 3:43 am

Re: New hope for BRAF mutation?

Postby NHMike » Fri Mar 23, 2018 9:41 am

I think that many articles get our hopes up for our loved ones.

One of the forum members, Mrs. Ziggy, lost her husband recently to BRAF V600E at MSK with a clinical trial of a couple of drugs.
6/17: ER rectal bleeding; Colonoscopy
7/17: 3B rectal. T3N1bM0. 5.2 4.5 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6, 5 x 5
7/17-9/17: Xeloda radiation
7/5: CEA 2.7; 8/16: 1.9; 11/30: 0.6; 12/20 1.4; 1/10 1.8; 1/31 2.2; 2/28 2.6; 4/10 2.8; 5/1 2.8; 5/29 3.2; 7/13 4.5; 8/9 2.8, 2/12 1.2
MSS, KRAS G12D
10/17: 2.7 2.2 1.6 cm (-90%). Lymphs: 3 x 3 mm (-62.5%), 4 x 3 (-75%), 5 x 3 (-40%). 5.1 CM from AV
10/17: LAR, Temp Ileostomy, Path Complete Response
CapeOx (8) 12/17-6/18
7/18: Reversal, Port Removal
2/19: Clean CT

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Robino1
Posts: 463
Joined: Fri Aug 11, 2017 12:09 pm
Facebook Username: Robin.lawthers
Location: Florida

Re: New hope for BRAF mutation?

Postby Robino1 » Fri Mar 23, 2018 10:22 am

I am BRAF V600e

Mine is still responding well to chemo. Statistics are only stats. Who's to say that I can't be one of those that defy the stats?

I was scared and in a dark place a few weeks ago. My CEA was doing a gentle climb and I was scared that it was the beginning of the end. I turned my thinking back around and gave myself a pep talk with the why NOT me that CAN get through this alive.

I had some skin cancer taken off my arm and my CEA dropped. Could be that the skin cancer was causing the rise? Dunno, but I'm thrilled that the CEA declined a bit.

One day at a time, one step at a time. All while never letting the goal line get out of sight.

Celebrate the successes, fight through the setbacks.

{{{{hugs}}}}. This is a journey none of us wanted to take.
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

rp1954
Posts: 1538
Joined: Mon Jun 13, 2011 1:13 am

Re: New hope for BRAF mutation?

Postby rp1954 » Sat Mar 24, 2018 10:14 am

If no one offers you anything else, I'd look into trying to slow the cancer down, stomp some sites, improve immune functions, and hit more of their likely molecular roots. You can look at my previous comments on better bloodwork and milder adjuvants in the archive. Although I'm directly concerned with KRAS, it's hard to avoid both in any given paper and necessarily needs to be teased apart and both compared for best understanding. One of the problems of current oncology for mutant mCRCs is that they don't treat fast growing mutants and stem cells spreading mCRC, every day.

One of the molecular keys is/was probably cimetidine added to daily 5FU (e.g. UFT or Xeloda), based on Matsumoto's and others work. However, this far along with previously treated CRC, 5FU will need more intensifiers for immune improvements (e.g. PSK, megavitamin D3, astragulus, WGP) and molecular attacks (e.g. resveratrol, celecoxib, curcumin, boswellia, quercetin, EGCG, MK4) as of high doses as one can get down safely. High dose IV vitamin C is both an immune modulator and a direct molecular attack. Again, a lot of important hints are in expanded, cumulative blood and tissue work.
Last edited by rp1954 on Sat Mar 24, 2018 10:28 am, edited 1 time in total.
watchful, active researcher and caregiver for stage IVb/c CC. surgeries 4/10 sigmoid etc & 5/11 para-aortic LN cluster; 8 yrs immuno-Chemo for mCRC; now no chemo
most of 2010 Life Extension recommendations and possibilities + more, some (much) higher, peaking ~2011-12, taper to almost nothing mid 2018, mostly IV C

NHMike
Posts: 2515
Joined: Fri Jul 21, 2017 3:43 am

Re: New hope for BRAF mutation?

Postby NHMike » Sat Mar 24, 2018 10:26 am

rp1954 wrote:If no one offers you anything else, I'd look into trying to slow the cancer down, stomp some sites, improve immune functions, and hit more of their likely molecular roots. You can look at my previous comments on better bloodwork and milder adjuvants in the archive. Although I'm directly concerned with KRAS, it's hard to avoid both in any given paper and necessarily needs to be teased apart and compared for best understanding. One of the problems of current oncology for mutant mCRCs is that they don't treat fast growing mutants and stem cells spreading mCRC, every day.

One of the molecular keys is/was probably cimetidine added to daily 5FU (e.g. UFT or Xeloda), based on Matsumoto's and others work. However, this far along, 5FU will need more intensifiers for immune improvements (e.g. PSK, megavitamin D3, astragulus, WGP) and molecular attacks (e.g. resveratrol, celecoxib, curcumin, boswellia, quercetin, EGCG, MK4) as of high doses as one can get down safely. High dose IV vitamin C is both an immune modulator and a direct molecular attack. Again, a lot of important hints are in the expanded, cumulative bloodwork.


One of the shocking things as I got into this stuff - genomic tumor testing isn't routinely done (it's likely uncommon) so how do you know that you have an aggressive mutation?

I think that the TIL therapy is a good direction to go in but it will take a long time to work through the long list of gene mutations.
6/17: ER rectal bleeding; Colonoscopy
7/17: 3B rectal. T3N1bM0. 5.2 4.5 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6, 5 x 5
7/17-9/17: Xeloda radiation
7/5: CEA 2.7; 8/16: 1.9; 11/30: 0.6; 12/20 1.4; 1/10 1.8; 1/31 2.2; 2/28 2.6; 4/10 2.8; 5/1 2.8; 5/29 3.2; 7/13 4.5; 8/9 2.8, 2/12 1.2
MSS, KRAS G12D
10/17: 2.7 2.2 1.6 cm (-90%). Lymphs: 3 x 3 mm (-62.5%), 4 x 3 (-75%), 5 x 3 (-40%). 5.1 CM from AV
10/17: LAR, Temp Ileostomy, Path Complete Response
CapeOx (8) 12/17-6/18
7/18: Reversal, Port Removal
2/19: Clean CT

rp1954
Posts: 1538
Joined: Mon Jun 13, 2011 1:13 am

Re: New hope for BRAF mutation?

Postby rp1954 » Sat Mar 24, 2018 10:33 am

Partly by pathology - locations and markers, partly by doubling times, partly soft indicators. Nothing is 100%, but with all the normal information and a little extra blood work, someone really expert could get a pretty good idea even in the opening days and be close enough to improve the prognosis.

I think many KRAS/BRAF mutant patients lose years during the first weeks or month, post diagnosis, because of less than optimal approaches to data collection, interpretation, and treatment. How decisions change your life, from Mr Destiny

I might point out, that for many BRAF/KRAS mutant patients, especially advanced stage BRAF mutant CRC, the extra blood tests done initially for minor costs on the first day, might be intelligently used to get genetic testing started on the 2nd day after diagnosis. There's a lot of wasted potential there.
watchful, active researcher and caregiver for stage IVb/c CC. surgeries 4/10 sigmoid etc & 5/11 para-aortic LN cluster; 8 yrs immuno-Chemo for mCRC; now no chemo
most of 2010 Life Extension recommendations and possibilities + more, some (much) higher, peaking ~2011-12, taper to almost nothing mid 2018, mostly IV C

Lele88
Posts: 10
Joined: Sun Mar 04, 2018 12:53 pm

Re: New hope for BRAF mutation?

Postby Lele88 » Sun Mar 25, 2018 2:02 am

Hey Guys,

Thanks for your responses.

I have an appointment with the onc tomorrow and I also read about extended blood tests. I want to ask for a liquid biopsy to get the braf v600 fraction. I have been told it is important to find out the percentage in the blood (meaning between 0 and 50). In case of a high percentage targeting the braf mutation directly seems to be the way to go.in case of a low percentage the standard therapy Folfoxiri and Avastin might work.

Anyone has experience with this?

Regards,
Lea

Steph20021
Posts: 553
Joined: Sat Dec 27, 2014 4:58 pm
Location: Ontario, Canada

Re: New hope for BRAF mutation?

Postby Steph20021 » Mon Sep 24, 2018 8:19 pm

I’ve never heard of getting the fraction before. I thought we either had the mutation or we didn’t. I’ll have to ask about this and do some research. They haven’t asked me for a liquid biopsy to do the trial I’m going through the prep for, just whether I have the mutation or not. I’m curious to know more.

Lele88 wrote:Hey Guys,

Thanks for your responses.

I have an appointment with the onc tomorrow and I also read about extended blood tests. I want to ask for a liquid biopsy to get the braf v600 fraction. I have been told it is important to find out the percentage in the blood (meaning between 0 and 50). In case of a high percentage targeting the braf mutation directly seems to be the way to go.in case of a low percentage the standard therapy Folfoxiri and Avastin might work.

Anyone has experience with this?

Regards,
Lea
DX 1/31/14 @ 33- SPS-T4a(invades visceral peri), N2a(6/106 LN), M1a(ovary) (Stage 4a) MSS; BRAF V600E
2/1/14-subtotal col, lost R ovary, temp ileo
3/14-9/14- folfox; sepsis
11/14-CT/PET: L ovary met, pelvic met, (?)ghost liver met(?)
12/14-folfiri -13 rds kept me stable from 3/15-6/15
8/15-HIPEC, NED
09/15- cea 0.9
05/16- recurrence in abdo wall and lymph nodes
01/17- pulmonary embolism
02/17- 1 wk radiation to abdo wall
08/16- on folfiri
01/18-folfox
11/18- Beacon trial-encorafenib & cetuximab


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