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 » Wed Jan 10, 2018 9:00 pm

Hugs Robino keep me updated as to how you are doing. I’m in your corner! xo 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

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Robino1
Posts: 463
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 9:16 pm

I hear you on that!! LOL :mrgreen:
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 » Thu Jan 11, 2018 1:34 pm

Cardiologist has been trying to get me but of corse I ignore, you know like you do... so get this one. I thought I had a heart attack November 29. Figured I was just being a girl or anxiety attack. That was some chest crusher let me tell you. Next day weak couldn’t walk. So finally went for stress, EKG, ECHO. CT of chest. Well... they finally get a hold of me at work today and I finally answer to get them off my back. All abnormal on the 3 tests and fluid around the heart and nodules in lungs (both). Lady flipped out on me, no strenuous activity and have to go back to them January 15. I don’t have time for this nonsense. Obviously recovered from whatever happened that night, because I’m still here and running around with hubby stuff. Should I blow off? Obviously not dropping dead anytime soon. God the drama queen on the phone! Gotta find out who that was... her panties all up in knots! LOL!
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: 1723
Joined: Fri Jul 21, 2017 3:43 am

Re: any peeps with BRAF mutation on here?

Postby NHMike » Thu Jan 11, 2018 1:42 pm

Zig2017 wrote:Cardiologist has been trying to get me but of corse I ignore, you know like you do... so get this one. I thought I had a heart attack November 29. Figured I was just being a girl or anxiety attack. That was some chest crusher let me tell you. Next day weak couldn’t walk. So finally went for stress, EKG, ECHO. CT of chest. Well... they finally get a hold of me at work today and I finally answer to get them off my back. All abnormal on the 3 tests and fluid around the heart and nodules in lungs (both). Lady flipped out on me, no strenuous activity and have to go back to them January 15. I don’t have time for this nonsense. Obviously recovered from whatever happened that night, because I’m still here and running around with hubby stuff. Should I blow off? Obviously not dropping dead anytime soon. God the drama queen on the phone! Gotta find out who that was... her panties all up in knots! LOL!


Caretakers have to take care of their own health first.
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; 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; 5/1 2.8; 5/29 3.2; 7/13 4.5; 8/9 2.8
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

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O Stoma Mia
Posts: 1450
Joined: Sat Jun 22, 2013 6:29 am

Re: any peeps with BRAF mutation on here?

Postby O Stoma Mia » Thu Jan 11, 2018 2:39 pm

NHMike wrote:Caretakers have to take care of their own health first.

I agree with the above statement. Mr. Z is incredibly lucky to have you as a loyal supporter, but for you to continue on effectively in this role you need to take care of yourself first. I think you need to keep track of how you are doing along the way and watch out for any danger signals that might appear.


Are you Heading for Caregiver Burnout?
https://www.caring.com/articles/caregiver-burnout-quiz

Caregiver Burnout Quiz
http://homecareassistance.com/blog/caregiver-burnout-quiz

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

Re: any peeps with BRAF mutation on here?

Postby Robino1 » Thu Jan 11, 2018 2:56 pm

Zig2017 wrote:Cardiologist has been trying to get me but of corse I ignore, you know like you do... so get this one. I thought I had a heart attack November 29. Figured I was just being a girl or anxiety attack. That was some chest crusher let me tell you. Next day weak couldn’t walk. So finally went for stress, EKG, ECHO. CT of chest. Well... they finally get a hold of me at work today and I finally answer to get them off my back. All abnormal on the 3 tests and fluid around the heart and nodules in lungs (both). Lady flipped out on me, no strenuous activity and have to go back to them January 15. I don’t have time for this nonsense. Obviously recovered from whatever happened that night, because I’m still here and running around with hubby stuff. Should I blow off? Obviously not dropping dead anytime soon. God the drama queen on the phone! Gotta find out who that was... her panties all up in knots! LOL!


Hate to tell you this but it sounds serious. I KNOW that is not what you want to hear on top of all the issues you are dealing with now. Mr. Zig needs you healthy. Yes, you have recovered from what happened earlier. It IS a sign that things are not right. Listen to your body when it gives you signals. It's when we ignore those signals that we get into the most trouble health wise.

You won't be doing Mr. Zig any good if you keel over from a heart attack. You should Not blow it off. {{{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

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susie0915
Posts: 847
Joined: Wed Aug 02, 2017 8:17 am
Facebook Username: Susan DeGrazia Hostetter
Location: Michigan

Re: any peeps with BRAF mutation on here?

Postby susie0915 » Thu Jan 11, 2018 4:01 pm

Robino1 wrote:
Zig2017 wrote:Cardiologist has been trying to get me but of corse I ignore, you know like you do... so get this one. I thought I had a heart attack November 29. Figured I was just being a girl or anxiety attack. That was some chest crusher let me tell you. Next day weak couldn’t walk. So finally went for stress, EKG, ECHO. CT of chest. Well... they finally get a hold of me at work today and I finally answer to get them off my back. All abnormal on the 3 tests and fluid around the heart and nodules in lungs (both). Lady flipped out on me, no strenuous activity and have to go back to them January 15. I don’t have time for this nonsense. Obviously recovered from whatever happened that night, because I’m still here and running around with hubby stuff. Should I blow off? Obviously not dropping dead anytime soon. God the drama queen on the phone! Gotta find out who that was... her panties all up in knots! LOL!


Hate to tell you this but it sounds serious. I KNOW that is not what you want to hear on top of all the issues you are dealing with now. Mr. Zig needs you healthy. Yes, you have recovered from what happened earlier. It IS a sign that things are not right. Listen to your body when it gives you signals. It's when we ignore those signals that we get into the most trouble health wise.

You won't be doing Mr. Zig any good if you keel over from a heart attack. You should Not blow it off. {{{hugs }}}

Agreed. Don't blow this off. Go talk to the doctor and at least hear what they would like you to do, and exactly what is going on.
58 yrs old Dx @ 55
5/15 DX T3N0MO
6/15 5 wks chemo/rad
7/15 sigmoid/scar tissue left
8/15 Pet scan NED
9/15 LAR
0/24 nodes
10/15 Bowel blockage. surgery,early ileo rev, c-diff inf :(
12/15 6 rds of xelox
5/16 Clear CT lung scarring/inflammation
9/16 clear colonoscopy
4/17 CT 4mm lung nod
7/17 no change lung nod
10/17 Clear pel/abd CT
11/17 CEA<.5
1/18 CT/Lung no change in 4mm nodule
5/18 CEA<.5, clear CT pel/abd/lung nod no change

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

Re: any peeps with BRAF mutation on here?

Postby Zig2017 » Thu Jan 11, 2018 5:21 pm

Ok I’ll keep the appointment. Got to look at the caregiver links o stoma Mia sent. My family has had a rough ride since 2008 and unfortunately I’m the caregiver for mom, brother, and now hubby. Won’t get into boring details here, but it all hit the fan one year out from Breast cancer, chemo, mastectomy. No break for 9 going on 10 years. I’m tired for sure. But want to be here for Mr Z! He’s a good man! Back to cardiologist I go! Onward....
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 » Thu Jan 11, 2018 5:27 pm

Yikes! I better reassess. My score was in the shitter on that quiz. Spa day?
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 Jan 13, 2018 9:21 am

Mr Ziggy’s brain scan report is up. It says several nodules in left orbit tissue, which they told me. Brain is fine. However several lesions in cervical spine now and base of skull. Not treatment related, they are osseous lesions. He is vomiting more easily now, sleeping A LOT. Starting with some discomfort on right side.

Please anyone reading this DONT LET IT DISCOURAGE YOU!!! Every single person is different and so is their disease.

I told you I would tell the truth on this, good, bad and the ugly. I’m sending all my love to you, and again, this is his particular path and doesn’t reflect others outcomes or situations. I suspect he was stage IV from the get go and it probably didn’t show up right away. 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 Jan 13, 2018 9:25 am

He is helping by being on this trial as is others. It is promising for a lot of people and hopefully will be standard of care along with BRAF, KRAS testing so that people in the future will be treated at earlier stages. This is my hope and it’s coming! Hang on people there are great things coming down the pike!
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: 463
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 13, 2018 1:25 pm

Even if bad news, I still want to hear how Mr. Zig AND You are doing. I'm so sorry for all that he is going through. You are handling it all very well. I wish I could hug you in person.
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 » Sat Jan 13, 2018 2:17 pm

I wish I could hug you too Robino! Virtual hugs to you! We will definitely discuss when we see her again, and i’ll Ask if bisphosphanate would be appropriate for bone lesions. I know they use it for breast cancer to bone lesions and it helps not only strengthen and heal but against lesions as well. We’ll see what doctor says, there’s plenty in the tool box. It wasn’t what I wanted to see, but thankfully no brain involvement. Mr Ziggy knows about eye, but not the other “stuff”. He asked about the nodules again last night, even though he’s been told by doctors first and then myself what they are. Maybe he forgets because he wants too, can’t blame him. We’ll move forward. I love him and will support and help where 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 17, 2018 6:45 am

Robino checking in on you this morning to see how you are doing. Hope you have a good day!
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: 463
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 17, 2018 8:50 am

Zig2017 wrote:Robino checking in on you this morning to see how you are doing. Hope you have a good day!


Still doing great. Chemo tomorrow then the pump for 48 hours. No CEA test. That's done every other session. I almost wish it was done every time but I understand that would be costly. I'm just glad that all of this is covered (after deductible was met) and don't pay anything out of pocket.

Thank you for asking!!


How are YOU doing? I worry about your heart.
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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