any peeps with BRAF mutation on here?

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Zig2017
Posts: 136
Joined: Tue Sep 26, 2017 12:26 pm

Re: any peeps with BRAF mutation on here?

Postby Zig2017 » Wed Jan 17, 2018 4:02 pm

I’m glad you’re doing well Robino!

No, they don’t do CEA every time, at least that’s been our experience, and quite frankly it’s good if they do it monthly or every other month. He’s on a clinical trial so they will check probably 4-6 weeks.

As for heart, they won’t leave me alone. Another echo to see if fluid around heart resolved, and they are not sure if I have a blockage so some kind of “nuclear” test will be done since I failed stress test and EKG was different. I know nothing about heart stuff, only cancer. So I’m kind of in the dark until this gets resolved. Not worried. I’m hard to kill!
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: 136
Joined: Tue Sep 26, 2017 12:26 pm

Re: any peeps with BRAF mutation on here?

Postby Zig2017 » Wed Jan 24, 2018 6:25 am

Hi everyone,
We had our follow up with oncologist yesterday. Bottom line is even though tumor markers dropped a lot, tests showed mixed bag. He looks good on paper, but the scans show new growth, stability in other areas. We will plug along for another month and if he still doesn’t show improvement, we will be moving on to Irinotecan with whatever else she feels would be appropriate. She doesnt want to risk him progressing if it’s not working well for him. She was saying maybe some of it doesn’t rely on EGFR, but maybe another pathway. Of course for an oncologist I’m sure it’s like looking for a needle in a haystack, so they have to try different things to find what works for each person. I’m hopeful we’ll get there, but the oncologist said he should be feeling good if it was working because tumor burden would be less and he’d have more energy, and he really feels so poorly. He is dizzy now too, lots of nausea difficult to feed him and he sleeps on average about 15 hours a day. Up for an hour or two, sleeping 3, etc. He tries to walk around but wiped out after that and sleeping. Only wants me around, doesn’t want to go out or socialize, it’s too tiring. Of course he is depressed too, so Ativan and compazine. We’ll see. Next three treatments at Basking Ridge location.
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

User avatar
Robino1
Posts: 343
Joined: Fri Aug 11, 2017 12:09 pm
Facebook Username: Robin.lawthers
Location: Florida

Re: any peeps with BRAF mutation on here?

Postby Robino1 » Wed Jan 24, 2018 8:08 am

Prayers that things get better!
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 CEA 219
FOLFOX started 6/17
CEA 202 Not genetic
8/29/17 CT excellent melting of tumor.
12/8/17 Markedly decr ant peritoneal nodularity since 8/29/17 compat w/ marked posi respns to therapy
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 Damnit
BRAF V600e

NHMike
Posts: 958
Joined: Fri Jul 21, 2017 3:43 am

Re: any peeps with BRAF mutation on here?

Postby NHMike » Wed Jan 24, 2018 9:44 am

This has been one rough process for you and I'm glad that you're keeping on with it.
6/23/17: ER rectal bleeding; Colonoscopy
7/13: Stage 3B rectal. T3N1bM0. 5.2 x 4.5 x 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6, 5 x 5
7/31-9/8: Xeloda 3,400 mg/day+radiation
7/5: CEA 2.7; 8/16: 1.9; 9/8: 1.8; 11/30: 0.6; 12/20 1.4
MSS, KRAS G12D
10/6: 2.7 x 2.2 x 1.6 cm (-90%). Lymphs: 3 x 3 mm (-62.5%), 4 x 3 (-75%), 5 x 3 (-40%). 5.1 CM from AV
10/30: LAR, Temp Ileostomy, Path Complete Response
12/20: Started CapeOx

Zig2017
Posts: 136
Joined: Tue Sep 26, 2017 12:26 pm

Re: any peeps with BRAF mutation on here?

Postby Zig2017 » Fri Jan 26, 2018 1:26 pm

Thanks Robino and NHMike. Been thinking about you both. It is a tough process, and I admire you both for going through so much in your lives. Everyone here really is a hero.

It is strange, he looks great on paper, but like I said before hopefully the meds will catch up with it. I’m glad his team is so on top of this, they really do watch everything on a trial. Cool heads prevail. Dealing with mom/nursing home stuff so I haven’t been on much, but want to correct that. You are in my thoughts and prayers and I want you to kick cancers butt! That pleases me when I see people succeeding, but also want to send love and support for the down times, too! We are in it together!
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: 96
Joined: Sat Mar 11, 2017 8:30 pm
Location: near DC

Re: any peeps with BRAF mutation on here?

Postby mhf1986 » Fri Jan 26, 2018 5:32 pm

Sending you hugs Mrs Z! There is no Smilies hug so sending some prayers too.

We've had a 4 week chemo break due to high bilirubin and low platelets. Makes me nervous as I don't like to think what's going on in there without the OX to pound on things. Probably back at it on Feb 6 if this Monday's test is OK. Last Monday's showed decent results so I still think it was the Xeloda. Sounds like your next step is FOLFIRI which is ours too after the FOLFOX quits.

Have you tried inviting someone over for a short visit? A friend of mine came to see me and her husband drove her here. DH and he had a nice quick chat that seemed to perk him up.

Good luck with your heart tests too. I need to get in for my eye tests, way overdue.

M
Caregiver to DH, dx age 50, mets to liver/lungs, MSS, quad wild
10/16: hemicolectomy (descending), perm. colostomy, CEA 114
11/16: port in, then FOLFOX + Avastin
4/17: CEA 11
6/17: CEA 15, OX discontinued for now due to neuropathy
11/17: CEA 38, change to CAPOX+A
12/17: CEA 29
2/18: CT scan stable, CAPOX no fun, back to FOLFOX+A

Zig2017
Posts: 136
Joined: Tue Sep 26, 2017 12:26 pm

Re: any peeps with BRAF mutation on here?

Postby Zig2017 » Sat Jan 27, 2018 9:39 am

MHF! Don’t be nervous, I know easier said than done. We do worry if their platelets are low and they can’t do treatment right away. 4 weeks is ok, he needs to have a little break so platelets can recover. Yes it sounds like FOLFIRI would be next, it’s kind of a waiting game for us too. I’m hoping the disease starts die off, at least get us to stable. Please keep your doctor appointments, with everything going on we both need to be in top shape. I’m kind of blowing off non-essential appointments. Heart I have to take care of, dentist... well that can wait. Sending you love prayers and hugs too. Trying to get Ziggy to socialize has been difficult. He really doesn’t feel well and it’s like pulling teeth. He does text cousins and friends, but not the same thing. Is your hubby eating well? I hope so. I’d rather see them a little chubby so they have some reserve, but cancer patients and their treatment kind of puts them off. It’s a balancing act for sure. 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

Zig2017
Posts: 136
Joined: Tue Sep 26, 2017 12:26 pm

Re: any peeps with BRAF mutation on here?

Postby Zig2017 » Tue Jan 30, 2018 7:52 pm

Well.... it hit the fan last night. I came home and Ziggy had thrown up eight or nine times. Then he tells me he gets nauseous if he twists to get something or crosses his legs or bends over. Weak, so I call his nurse at Sloan. Today was going to be treatment but instead a bag of fluid to hydrate. Plus CT scan. Progression in peritoneal and retroperitoneal. Nurse in doctors office also said increased disease in pelvis starting to obstruct lower ureter. He can pee though. Lungs are questionable now too. I think she felt bad calling...

Onward. We go to Irinotecan and maybe 5FU not sure calling doctor at 10:00 am tomorrow for consult back to Basking Ridge Sloan campus Thursday.

As ive said before. This cancer is Einstein level. Figured out how to mutate itself to survive these drugs. Never saw anything like it. Maybe Irinotecan is the answer. We’ll see! We are off the trial.
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

ppanamared
Posts: 8
Joined: Wed Jun 28, 2017 5:47 pm

Re: any peeps with BRAF mutation on here?

Postby ppanamared » Tue Jan 30, 2018 8:04 pm

Iri had slow but good results in my ab mets, cut them down to a third of so after a few months and really only had hicups as side effect. Yeah dont ask me lol...i hope you have good success with it:)

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Robino1
Posts: 343
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 Jan 30, 2018 8:53 pm

Zig2017 wrote:Well.... it hit the fan last night. I came home and Ziggy had thrown up eight or nine times. Then he tells me he gets nauseous if he twists to get something or crosses his legs or bends over. Weak, so I call his nurse at Sloan. Today was going to be treatment but instead a bag of fluid to hydrate. Plus CT scan. Progression in peritoneal and retroperitoneal. Nurse in doctors office also said increased disease in pelvis starting to obstruct lower ureter. He can pee though. Lungs are questionable now too. I think she felt bad calling...

Onward. We go to Irinotecan and maybe 5FU not sure calling doctor at 10:00 am tomorrow for consult back to Basking Ridge Sloan campus Thursday.

As ive said before. This cancer is Einstein level. Figured out how to mutate itself to survive these drugs. Never saw anything like it. Maybe Irinotecan is the answer. We’ll see! We are off the trial.


I'm seriously praying hard for your husband.
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 CEA 219
FOLFOX started 6/17
CEA 202 Not genetic
8/29/17 CT excellent melting of tumor.
12/8/17 Markedly decr ant peritoneal nodularity since 8/29/17 compat w/ marked posi respns to therapy
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 Damnit
BRAF V600e

Zig2017
Posts: 136
Joined: Tue Sep 26, 2017 12:26 pm

Re: any peeps with BRAF mutation on here?

Postby Zig2017 » Wed Jan 31, 2018 6:39 am

Thanks Robino. I definitely believe God is good no matter what is going on. As my friend’s husband once said “sometimes it sucks to be human”. They lost their daughter to a rare form of cancer. She was 34. I’m praying too for him and all of you lovely people. I do believe in this trial and Sloan. Perhaps if these drugs get to market they can be given earlier and help people. God I do hope the FDA approves them for colon cancer BRAF. I think they will. We’ll keep going forward and take the Irinotecan. I will take care of Mr Ziggy and be of encouragement to him. Every person needs that. 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

Zig2017
Posts: 136
Joined: Tue Sep 26, 2017 12:26 pm

Re: any peeps with BRAF mutation on here?

Postby Zig2017 » Wed Jan 31, 2018 6:42 am

PS - the other piece of this is he’s got a squamous cell component to his cancer which is unusual in itself. A perfect storm if you will. So I knew going in this was going to be a tough nut to crack.
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: 96
Joined: Sat Mar 11, 2017 8:30 pm
Location: near DC

Re: any peeps with BRAF mutation on here?

Postby mhf1986 » Wed Jan 31, 2018 7:42 pm

Mrs. Z, sending you hugs and prayers. Irinotecan may be an oldie but it's a goodie. Tough drug. Do watch out for the diarrhea and get some prescription strength help if needed.

My bible verse last night (great ap on the Ipad) was Ask and you shall receive, Seek and you shall find. I asked for a cure for us all...now, not next year.

Sending more hugs,
M
Caregiver to DH, dx age 50, mets to liver/lungs, MSS, quad wild
10/16: hemicolectomy (descending), perm. colostomy, CEA 114
11/16: port in, then FOLFOX + Avastin
4/17: CEA 11
6/17: CEA 15, OX discontinued for now due to neuropathy
11/17: CEA 38, change to CAPOX+A
12/17: CEA 29
2/18: CT scan stable, CAPOX no fun, back to FOLFOX+A

behconsult
Posts: 223
Joined: Fri Jul 04, 2014 4:53 pm

Re: any peeps with BRAF mutation on here?

Postby behconsult » Wed Jan 31, 2018 9:36 pm

Zig2017 wrote: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!


I think another variable involved is whether someone is MSS vs MSI with the Braf V600e. Each has different responses. 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.

Zig2017
Posts: 136
Joined: Tue Sep 26, 2017 12:26 pm

Re: any peeps with BRAF mutation on here?

Postby Zig2017 » Wed Jan 31, 2018 10:56 pm

Thank you MHF! You are right that is a perfect verse! I will continue to ask for my husbands life to be good and for cures for ALL! That’s perfect and I appreciate the encouragement so much!

Hi Bob my husband is MSS. Not MSI, I think MHF is right though Irinotecan is a goodie. I’m going to stock up on some Imodium and make sure he doesnt get dehydrated. MHF does your hubby drink enough fluids? These drugs make liver and kidneys work hard and I think about that a lot. 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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