any peeps with BRAF mutation on here?

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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 » Tue Jan 09, 2018 7:51 am

I will definitely address it today along with kidneys.
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 » Tue Jan 09, 2018 9:36 am

They are keeping him on the trial! Yay! Doc said adenopathy stable, they’ll watch the nodules and their growth. If we see changes of course treatment will change but as of now we are still plugging along!
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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Robino1
Posts: 461
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 09, 2018 10:15 am

Yay on being able to stay on the trial (ever notice how just switching the a and i make a huge difference in that word?)

Thinking of trails, I guess we are all on our own personal trails towards a longer life. ;)
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

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

Re: any peeps with BRAF mutation on here?

Postby Zig2017 » Tue Jan 09, 2018 10:56 am

Yes Robino that is a very thoughtful take on it. We are on this trail together and I sincerely hope your 2018 is smooth and you continue to move forward and enjoy life. The highs and lows for anyone going through cancer can be extreme sometimes. Like a rollercoaster. Mr Ziggy has highs and lows as we hear and read things our doctor tells us. She said if anything goes south she would start something else for him chemo wise, but wants to do what’s best and give this a chance to work. The fact that CEA dropped 1600 points and his CA19-9 I just found out dropped 95,500 points (they said this one was actually at 138,000) is amazing. If you ever need a clinical trial, Dr Yaeger at Sloan in NYC is an awesome scientist and doctor. You can ask her anything and if she doesn’t know she will find out. They are all that way. Lovely people, can’t say enough about the NY campus. It’s a good trial Robino. Very thorough. Getting Brain MRI this afternoon since Mr Ziggy’s left eye is drooping. Looks smaller than the other one. Could just be infection or something but they have to check of course. I’m not worried.i noticed it yesterday and told Dr Yaeger. They are not worried about lung.
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: 461
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 09, 2018 11:14 am

Zig2017 wrote:Yes Robino that is a very thoughtful take on it. We are on this trail together and I sincerely hope your 2018 is smooth and you continue to move forward and enjoy life. The highs and lows for anyone going through cancer can be extreme sometimes. Like a rollercoaster. Mr Ziggy has highs and lows as we hear and read things our doctor tells us. She said if anything goes south she would start something else for him chemo wise, but wants to do what’s best and give this a chance to work. The fact that CEA dropped 1600 points and his CA19-9 I just found out dropped 95,500 points (they said this one was actually at 138,000) is amazing. If you ever need a clinical trial, Dr Yaeger at Sloan in NYC is an awesome scientist and doctor. You can ask her anything and if she doesn’t know she will find out. They are all that way. Lovely people, can’t say enough about the NY campus. It’s a good trial Robino. Very thorough. Getting Brain MRI this afternoon since Mr Ziggy’s left eye is drooping. Looks smaller than the other one. Could just be infection or something but they have to check of course. I’m not worried.i noticed it yesterday and told Dr Yaeger. They are not worried about lung.


Those number drops are amazing. That there are options is very heartening. As long as there are paths to travel on our trail, we keep going down them till we find our way out.

Ups and downs are to be expected. My CEA spiked a bit but did come down again. Why it spiked, I don't know but I could speculate. Dying cancer cells (I hope!) or a supplement that contained biotin (I've discontinued that one now). I don't know why but the downward progress is still in play. :)

Yep, we will have bumps on that trail but we keep walking and fighting. :D

I will certainly keep Dr. Yaeger on my list!
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

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

Re: any peeps with BRAF mutation on here?

Postby Zig2017 » Wed Jan 10, 2018 7:13 am

Robino yes cancer cells dying off I believe may show them in circulation from die off and CEA can rise as your going through chemo and then drop back down. At least that’s how I understand it from my breast cancer stint. Yes it is quite the winding road and cancer patients have my full heart due to all they go through. As for Dr Yaeger, she is an excellent doctor and is very proactive. She’s brilliant and a good part of her focus is on BRAF. We have been fortunate with kind care givers, our previous oncologist was a gem, too. She’d call me on the sly to give updates so I’d have a heads up and not be blind sided when we got in there. She’d also speak more frankly and technical to me then hubby and give him encouragement. But unfortunately I had to move him to Sloan because this was out of the scope of our local hospital and we needed this clinical trial. I’m so encouraged by your continued good news Robino! Blessings, Mrs Z.
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

NHMike
Posts: 1438
Joined: Fri Jul 21, 2017 3:43 am

Re: any peeps with BRAF mutation on here?

Postby NHMike » Wed Jan 10, 2018 8:58 am

Zig2017 wrote:Robino yes cancer cells dying off I believe may show them in circulation from die off and CEA can rise as your going through chemo and then drop back down. At least that’s how I understand it from my breast cancer stint. Yes it is quite the winding road and cancer patients have my full heart due to all they go through. As for Dr Yaeger, she is an excellent doctor and is very proactive. She’s brilliant and a good part of her focus is on BRAF. We have been fortunate with kind care givers, our previous oncologist was a gem, too. She’d call me on the sly to give updates so I’d have a heads up and not be blind sided when we got in there. She’d also speak more frankly and technical to me then hubby and give him encouragement. But unfortunately I had to move him to Sloan because this was out of the scope of our local hospital and we needed this clinical trial. I’m so encouraged by your continued good news Robino! Blessings, Mrs Z.


It looks like you've had a rough time recently but I do hope that things work out for Mr. Zig with your excellent team.
6/17: ER rectal bleeding; Colonoscopy
7/17: Stage 3B rectal. T3N1bM0. 5.2 x 4.5 x 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6, 5 x 5
7/17-9/17: Xeloda +radiation
7/5: CEA 2.7; 8/16: 1.9; 9/8: 1.8; 11/30: 0.6; 12/20 1.4; 1/10 1.8; 1/31 2.2; 2/28 2.6; 4/10 2.8
MSS, KRAS G12D
10/17: 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
10/17: LAR, Temp Ileostomy, Path Complete Response
CapeOx 8 cycles 12/17-6/18

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

Re: any peeps with BRAF mutation on here?

Postby Zig2017 » Wed Jan 10, 2018 1:28 pm

Hi NHMike, yes he’s having a rough go, but we are in good hands. I’m getting used to the ups and downs but more worried about hubs. He gets depressed and understandably so. It’s hard to not have control, but that’s what our Dr is here for. We have to let her help us, she studies this all day long! That’s what I try to tell him, besides we are in it together and i’ll Help anyway I can.
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 » Wed Jan 10, 2018 6:28 pm

Well found out this afternoon what the sunken eye was all about. Apparently a nodule is in the soft tissue by the eye and that’s causing the problem. He has 7-8 of them on his scalp, besides the subcutaneous abdominal ones and peritoneal and retroperitoneal. They will keep an eye on it. No pun intended... and rescan the head in a couple of weeks. He has unusual spread with this it seems. So I’m to watch him for symptoms. His brain is clear so that is good.
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

rp1954
Posts: 1326
Joined: Mon Jun 13, 2011 1:13 am

Re: any peeps with BRAF mutation on here?

Postby rp1954 » Wed Jan 10, 2018 6:54 pm

Zig2017 wrote:...She said if anything goes south she would start something else for him chemo wise, but wants to do what’s best and give this a chance to work

We add something(s) to the chemo.

The fact that CEA dropped 1600 points and his CA19-9 I just found out dropped 95,500 points (they said this one was actually at 138,000) is amazing.

Declining markers are nice but not necessarily "getting to clear" on the lymph nodes and mets. I've seen glimpses of this in our experience (e.g. marker down ~98% but x% tissue still viable, LN still full 2.3 cm; tissue 100% dead but not dissolved yet at 1-4 weeks and not enough samples/markers taken; no biopsy, 3-5 cm mass disappears and lots of markers over 1-2 years...)

If you could stack/list the time series of the CEA, CA199, ALP, LDH(LD) or GGTP(GGT), MCV, WBC, ESR or hsCRP etc, it'd be more effective and we'd have more to talk about. Some important steps are getting cells/masses to fully die AND dissolve, vs if they swell up and sit there. Cells in masses die at different rates, in different ways and places; zombies often need to be prodded in different ways to dissolve.
[date] CEA, CA199, ALP, LDH, MCV, WBC or differentials

Robino yes cancer cells dying off I believe may show them in circulation from die off and CEA can rise as your going through chemo and then drop back down....She’d call me on the sly to give updates so I’d have a heads up and not be blind sided when we got in there. She’d also speak more frankly and technical to me then hubby and give him encouragement.

Yes, this is a much better set up. My wife often prefers not to go.
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 » Wed Jan 10, 2018 7:52 pm

Rp1954 I like to see all his blood numbers and I compare each one. Oddly with all this going on including liver enzymes, NOTHING is out of range!!! I’m shocked by that but happy. Even before this biologics treatment they were normal range. Only weird one that hangs out at 16 or 17 is his RDW. LD was 583 dropped to normal. I’m sure he has some active disease left, nodules are progressing including to by his eye! Yet, adenopathy hasn’t grown. They are showing “stable”. Of course they haven’t biopsied anything yet, would love to see them inactive or dead, but they didn’t shrink either. All over 2 cm pretty much and after the November 29 scan didn’t grow. CT was January 2. It’s these damn nodules.
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 » Wed Jan 10, 2018 8:08 pm

CEA Over the summer was 39 before treatment. July 26. By November 1,807.

CA19-9 was 2700 in June, 3100 by August sometime, 132,458 by November, went up to 138,000 according to them, and then dropped to around 42,500 as of January 2.

All other numbers normal range, including creatine, bun, etc.

RBC, Hemo, platelets, mono MCV etc all normal
Only low numbers in June before surgery and FOLFOX when he was extremely ill.

Sugar non fasting hangs around 69-70 range pretty much always.

Red blood cell distribution width always between 15-17 which is a little high

So as far as his reports in blood CBC nothing to see here except obviously the tumor markers
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 » Wed Jan 10, 2018 8:20 pm

Yes they probably do die at different rates, but like you said I don’t want any viable cancer in there! So conflicting as this disease stabilizes and hopefully dies. Do you think he can be NED after this mess or is stable our best bet? I know you don’t cure metastatic disease always,but wondering if we can get to manage it. Until this Einstein level shit decides to use a different signaling pathway or mutate. How long would supplements work or does the cancer work around that eventually? Dunno. Above my pay grade. Question of the ages, I know.
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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Robino1
Posts: 461
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 10, 2018 8:50 pm

Zig2017 wrote:Yes they probably do die at different rates, but like you said I don’t want any viable cancer in there! So conflicting as this disease stabilizes and hopefully dies. Do you think he can be NED after this mess or is stable our best bet? I know you don’t cure metastatic disease always,but wondering if we can get to manage it. Until this Einstein level shit decides to use a different signaling pathway or mutate. How long would supplements work or does the cancer work around that eventually? Dunno. Above my pay grade. Question of the ages, I know.


I have those same questions. WAAAAAAAAAAAAAY above my pay grade too ;)

Sending you lots of hugs and love {{{{ hugs }}}}
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

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

Re: any peeps with BRAF mutation on here?

Postby Zig2017 » Wed Jan 10, 2018 8:59 pm

LOL! Robino we already know more than we should unfortunately!
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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