any peeps with BRAF mutation on here?

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lkub
Posts: 21
Joined: Mon Mar 14, 2016 12:14 am

Re: any peeps with BRAF mutation on here?

Postby lkub » Sat Feb 17, 2018 10:33 am

Zig2017 wrote:Dear one,
I can’t imagine what you’re going through right now. I know it is so hard thinking about losing a life partner, and it must be even harder with children. My heart hurts for you but there is still hope and time if they are treating him. Your hubby sounds like a very strong man. The treatments aren’t easy I know. Please try to surround yourself with supportive family and friends and I hope you have someone close to share things on a spiritual level. Whether that be minister, rabbi, etc. I also think speaking openly and honestly with hubby as he goes through treatment is vital. Most of all love on him a lot. I wrote a long post here yesterday on the status of my husband’s journey, but it apparently didn’t post. My sincere love and prayers go out to you, and I’m hoping your family is trying to keep things as normal a routine as possible for the kids. I also learned if someone wants to help with kids, house, groceries and whatever, let them. They sincerely want to express love and want to help. All my love, Mrs Ziggy


Oh, the fact that you took the time to encourage me in the midst of your grief...you are a wonderful person. I didn't know he had passed when I wrote that last night. I'm so sorry.
DH-stage 3b rectal signet ring cell dx 11/15 age 41
rad/xeloda 12/15-1/16
total colectomy&ileo(jpouch) 3/16
4/16 CEA 0.6
oxali&xeloda 3/16-8/16
clean CT 9/16 NED
10/16 reversal
4/17 CEA 1.4
10/17 CEA 44.4
10/17 CT mets to nodes peritoneum pelvis-stage 4
10/17 biopsy KRAS/BRAF/NRAS wild
11/17 port
11/17 FOLFIRI+erb
1/18 Erb failed CT mets spine/pelvis
2/18 stent ureteral obst
2/18 FOLFIRI+Avastin
3/18 small bowel obstr
3/18 CEA 114
4/18 FOLFOX+Vbix FAILED
5/18 ascites
6/18 hospice
Lynch neg

User avatar
LPL
Posts: 626
Joined: Fri Apr 22, 2016 12:49 am
Location: Europe

Re: any peeps with BRAF mutation on here?

Postby LPL » Sat Feb 17, 2018 5:55 pm

Oh Dear Mrs Ziggy,
It has been a few days since I checked in here and
I’m SO SORRY to hear this news about your husband :cry:
My deepest condolences to you!
Warm Hug /L
DH @ 65 DX 4/11/16 CC recto-sigmoid junction
Adenocarcenoma pt 35x15x9mm G3(biopsi) G1(surgical)
Mets 3 Liver resectable
T4aN1bM1a Stage IVa 2/9 LN
MSS, KRAS-mut G13D
CEA & CA19-9: 5/18 2.5 78 8/17 1.4 48 2/14/17 1.8 29
4 Folfox 6/15-7/30 (b4 liver surgery) 8 after
CT: 8/8 no change 3/27/17 NED->Jan-19 mets to lung
:!: Steroid induced hyperglycemia dx after 3chemo
Surgeries 2016: 3/18 Emergency colostomy
5/23 Primary+gallbl+stoma reversal+port 9/1 Liver mets
RFA 2019: Feb lung met

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

Re: any peeps with BRAF mutation on here?

Postby Zig2017 » Sat Feb 17, 2018 6:04 pm

LPL,thank you.im just grateful he didn’t suffer. He left this world after he came home which is what he wanted. xoxo
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 » Sat Feb 17, 2018 6:07 pm

Ikub, I wanted to send love and encouragement because I know what you’re going through. It’s a tough time for people going through treatment and it’s life changing. Not just for the person that’s sick, but the whole family. xoxo
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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Shana
Posts: 401
Joined: Sun Jul 30, 2017 9:45 pm
Location: Sonoma, CA

Re: any peeps with BRAF mutation on here?

Postby Shana » Mon Feb 19, 2018 7:45 pm

Dear Mrs. Z,

i haven't been on here for a few days and just saw your post. I am so very sorry that your husband passed away. You're an incredibly strong woman to offer others comfort during this time of grieving. I'm glad that he didn't suffer and that he was home with you. Sending you warm hugs, may his memory be a blessing and you find comfort in those memories.

Keeping you in my thoughts.

Shana
DX - 12/16
MSS - KRAS wild
Well-differentiated adenocarcinoma at splenic flexure
Stage IV CC with liver mets
5FU - Failed twice - 1/17 and 3/17
Irinotecan + Cetuximab: 8/17
Irinotecan and Erbitux ran it's course. CEA rising
Primary tumor invaded tail of pancreas and spleen. Liver mets major concern
Y-90 radioembolization on 9/17/18, liver enzyymes have dropped. 10 Radiation treatments to primary tumor completed too. CT scan Nov to assess overall situation...

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

Re: any peeps with BRAF mutation on here?

Postby Zig2017 » Mon Feb 19, 2018 11:54 pm

Thank you Shana,
As I reflect on the last 3 days and all the business, I’m touched at how many people loved my husband. He was a thoughtful soul going above and beyond to help those around him. We didn’t have any children, just a cat. He was an only child with his mom still here. I’ve lost an aunt and my first cousin this year. But what we lacked in family members I’ve come to realize that we both had family in our friends. God has given me peace and sleep, and amazing help from coworkers and friends. I hope he knows how much he’s missed not only by me, but many people who were devasted by his passing and the help they’ve given his widow. Even shoveling my driveway and looking in on my mother in law while I took care of the tasks at hand. A door has closed on this part of my life but I know I will continue to love him and move forward with life. Even when I feel alone, I’m not alone. We feel sadness and grief with loss and that’s ok. Then I pick up and walk a few more steps. This will happen to everyone at some point, and as my friends husband said sometimes it sucks to be human. Love Mrs Ziggy xoxo
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

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

Re: any peeps with BRAF mutation on here?

Postby Steph20021 » Tue Sep 18, 2018 5:59 pm

I just learned I probably still have the brafv600e mutation and I’ll be starting the beacon trial soon in Toronto once my mutation is confirmed from my 2015 surgery sample. Not sure which arm I’ll get into since it’s random assignment. Apparently the mutation is rare, only 5-10% of people have it so finding people for the beacon study is hard.

I’ll be reading through this dialogue tonight and catching myself up. I am hopeful it helps me. I’m done with folfox and Folfiri now. I’ve had growth on both.

Zig2017 wrote: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
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

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

Re: any peeps with BRAF mutation on here?

Postby Steph20021 » Thu Jan 10, 2019 12:44 pm

I just wanted to update this thread that just before Christmas 2018 I had my first CT scan since starting the Beacon Trial (Brafv600e mutant) at the start of No ember 2018 and I’ve had small shrinkage in a couple areas and stability with the rest. My pain is almost non-existent in my abdominal wall met since starting the trial. No bad side effects but a bit of fatigue and face rash.
I’ll update as I go. Thanks to all who have left a legacy of information here for me to learn and benefit from.
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

Ruth234
Posts: 2
Joined: Sat Jan 12, 2019 11:24 pm

Re: any peeps with BRAF mutation on here?

Postby Ruth234 » Sun Jan 13, 2019 1:25 am

I am a 62 year old female diagnosed with colon cancer (adenocarcinoma) on 9 Sep 2017 and had an emergency right hemicolectemy due to intestinal blockage.

I am RAS wild, BRAF V600E positive, MSSI high with TMB of 42. I had Foundation One testing done on my tumor in March 2018.

I progressed after a first line chemo series of 6 rounds FOLFOX and Vectabix, and again after a second line therapy of 6 rounds of Opdivo with new nodules and groups each time.

In mid-May, I started the VIC (cetuximab, irinotecan and vemurafenib) regime from Dr Scott Kopetz's SWOG 1406 trial and after 5 cycles saw partial response with no new growth, shrinkage and several nodule groups that just disappeared. On Cycle 9, we reduced to 160 mg/m2 of irinotecan and vemurafenib 740 mg PO 2x to manage diarrhea. My last PET scan on 30 Oct after Cycle 12 showed NED, yeah! Vemurafenib is a BRAF inhibitor and it is an off label use for colon cancer - not yet FDA approved but updated in the NCCN guidelines as an approved 2nd or 3rd line of treatment for BRAF V600E based on results from the Stage II trial. The disease control rate was 67%.

Based on discussions with my oncologist, we are continuing maintenance with 8 cycles with full cetuximab and a reduced dose of 125 mg/m2 of irinotecan, vemurafenib 740 mg PO 2x and will do another PET scan at the end of February. I'm managing side effects of mild to moderate fatigue, moderate to severe diarrhea, and potassium, magnesium and fluid loss. Questions I'm researching are:
1. Is there any data on maintenance protocols being considered for this treatment regime? It is still ongoing in the Phase II trial so this is new kind of new ground.
2. Based on the potential over time for activating mutations in MEK or NRAS and prime resistance to MAPK inhibition resulting in activation of downstream ERK signaling, are there any monitoring tests for this? Is FoundationOne Liquid or other ctDNA liquid biopsies of any use?

So after a terrifying first year, I'm cautiously encouraged by the last 5 months. I do VIC Cycle 18 on Monday. I'll update progress as appropriate and would be happy to answer questions if anyone has them.
F, 62, CC
9/11/17: Right hemicolectemy, Stage IVB, Asc adenocarcinoma 7.5x6 cm, T4N2M2, G3, 19/38 LN +, peri mets
RAS wild, BRAF V600E, MSI High, TMB High, loss of exp MLH1/PMS2
10/17-1/18: 6 cyc FOLFOX+Vectabix; 1/18/18 PET progression/new nodules
1/25/1-4/25/18: 6 cyc Opdivo, 4/16 PET showed progression/2 new nodule groups
5/14/18-10/30/18: 12 cyc CIV (Cetuximab, Irinotecan, Vemurafenib); 7/17/18 CT no progression, some nodule shrinkage
10/30/17 PET NED, maint chemo C/70% I/75% V

User avatar
Jack&KatiesMommy
Posts: 582
Joined: Wed Dec 21, 2011 1:08 pm
Location: Columbus, OH

Re: any peeps with BRAF mutation on here?

Postby Jack&KatiesMommy » Tue Jan 15, 2019 2:19 pm

Ruth234:
First, I am soooo happy for you! This is wonderful news! You should post a new thread with your encouraging results!!!! There are a number of people who have just been diagnosed and whom have the BRAF mutation that would really benefit from this information but they will have a hard time finding it buried in this thread! It is wonderful!!!!
Cynthia
Cynthia
Mommy to Jack (8) now (16) and Katie (4) now (12)
(My Most Precious Things)
Dx 8/11 Stage IV CRC (liver mets) CEA 2,600+
9/11 Folfiri 2/12: Failed Liver Resection
5/12 HAI pump/removed primary
4/13 Liver Resection
8/13-12/15 (10) RFAs lungs
5/17: Upper Left Lobe of lung resected.
02/18: 3 new mets lymph nodes lung:
05/18: Keytruda (MSS w/Intermediate TMB): CEA: 66.4, 39.2, 23.8, 13, 3.5 1.8, 1.0, 2.8 3.9, 5.0, 5.6, 1.5, .8, .8, 1.1, 1.1, .7
7/18; 9/18; 11/18; 2/19 Clear CT scans

tigran.nl
Posts: 4
Joined: Sat Jan 12, 2019 4:04 am
Facebook Username: Tigran

Re: any peeps with BRAF mutation on here?

Postby tigran.nl » Mon Feb 04, 2019 2:58 pm

Hi Ruth. My father also starting VIC today. I need to get more information about side effects, benefits, etc., how can I contact you?

Ruth234 wrote:I am a 62 year old female diagnosed with colon cancer (adenocarcinoma) on 9 Sep 2017 and had an emergency right hemicolectemy due to intestinal blockage.

I am RAS wild, BRAF V600E positive, MSSI high with TMB of 42. I had Foundation One testing done on my tumor in March 2018.

I progressed after a first line chemo series of 6 rounds FOLFOX and Vectabix, and again after a second line therapy of 6 rounds of Opdivo with new nodules and groups each time.

In mid-May, I started the VIC (cetuximab, irinotecan and vemurafenib) regime from Dr Scott Kopetz's SWOG 1406 trial and after 5 cycles saw partial response with no new growth, shrinkage and several nodule groups that just disappeared. On Cycle 9, we reduced to 160 mg/m2 of irinotecan and vemurafenib 740 mg PO 2x to manage diarrhea. My last PET scan on 30 Oct after Cycle 12 showed NED, yeah! Vemurafenib is a BRAF inhibitor and it is an off label use for colon cancer - not yet FDA approved but updated in the NCCN guidelines as an approved 2nd or 3rd line of treatment for BRAF V600E based on results from the Stage II trial. The disease control rate was 67%.

Based on discussions with my oncologist, we are continuing maintenance with 8 cycles with full cetuximab and a reduced dose of 125 mg/m2 of irinotecan, vemurafenib 740 mg PO 2x and will do another PET scan at the end of February. I'm managing side effects of mild to moderate fatigue, moderate to severe diarrhea, and potassium, magnesium and fluid loss. Questions I'm researching are:
1. Is there any data on maintenance protocols being considered for this treatment regime? It is still ongoing in the Phase II trial so this is new kind of new ground.
2. Based on the potential over time for activating mutations in MEK or NRAS and prime resistance to MAPK inhibition resulting in activation of downstream ERK signaling, are there any monitoring tests for this? Is FoundationOne Liquid or other ctDNA liquid biopsies of any use?

So after a terrifying first year, I'm cautiously encouraged by the last 5 months. I do VIC Cycle 18 on Monday. I'll update progress as appropriate and would be happy to answer questions if anyone has them.

tigran.nl
Posts: 4
Joined: Sat Jan 12, 2019 4:04 am
Facebook Username: Tigran

Re: any peeps with BRAF mutation on here?

Postby tigran.nl » Wed Feb 06, 2019 7:09 am

Hi Steph20021, do you have any update from Beacon trial?
Steph20021 wrote:I just wanted to update this thread that just before Christmas 2018 I had my first CT scan since starting the Beacon Trial (Brafv600e mutant) at the start of No ember 2018 and I’ve had small shrinkage in a couple areas and stability with the rest. My pain is almost non-existent in my abdominal wall met since starting the trial. No bad side effects but a bit of fatigue and face rash.
I’ll update as I go. Thanks to all who have left a legacy of information here for me to learn and benefit from.
Last edited by tigran.nl on Sat Feb 09, 2019 4:59 pm, edited 1 time in total.

Ruth234
Posts: 2
Joined: Sat Jan 12, 2019 11:24 pm

Re: any peeps with BRAF mutation on here?

Postby Ruth234 » Tue Mar 26, 2019 11:14 pm

Tigran.nl,

What questions do you have? I record my chemo side effects daily using a PDF file I found online to be able to do analysis and that has helped me have evidence based data to discuss with my oncologist. My worst side effects were mostly irinotecan related:
1. Fatigue - 4 moderate days per two week cycle and 8 mild days, no fatigue on the day after treatment thanks to the Decadron steroid boost.
2. Diarrhea - by far the worst, leading to weight loss and difficulty keeping my electrolytes up. Added 800 mg of oral magnesium daily and 120 meq of oral slow release potassium daily and for a while had mid week infusions of both based on weekly bloodwork. Lomotil helps control the diarrhea. It has gotten less severe over the last 2 months and I haven't needed additional interim IV fluids/electrolytes in 2 months. Diarrhea frequency has reduced by 50-80% in the new year.
3. Nausea/vomiting - mild for a couple of days per cycle - Zofran works to control in about 30 minutes. Has gotten much less frequent during the last 2 months.
4. Light facial rash from Erbitux
5. Extended ST cycle on EKG from vemurafenib
6. Everything had a metallic taste for the early part of the treatments but since October, I'm hungry most of the time.

I'm on Cycle 22 and still NED based on my last PET Scan a month ago so we are continuing with the treatment but moving to 3 week cycles starting in April.

Ruth
F, 62, CC
9/11/17: Right hemicolectemy, Stage IVB, Asc adenocarcinoma 7.5x6 cm, T4N2M2, G3, 19/38 LN +, peri mets
RAS wild, BRAF V600E, MSI High, TMB High, loss of exp MLH1/PMS2
10/17-1/18: 6 cyc FOLFOX+Vectabix; 1/18/18 PET progression/new nodules
1/25/1-4/25/18: 6 cyc Opdivo, 4/16 PET showed progression/2 new nodule groups
5/14/18-10/30/18: 12 cyc CIV (Cetuximab, Irinotecan, Vemurafenib); 7/17/18 CT no progression, some nodule shrinkage
10/30/17 PET NED, maint chemo C/70% I/75% V

behconsult
Posts: 245
Joined: Fri Jul 04, 2014 4:53 pm

Re: any peeps with BRAF mutation on here?

Postby behconsult » Wed Mar 27, 2019 1:05 pm

Thanks for the update. May complete healing be yours!! Bob
Stage 4 Age 56 BrafV660E 5/14
spot on perit/ Right side tumor
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 four spots- Collapsed lung/chest tube 2x
Possible local recurrence in a spot or two on PET. Stable CT


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