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Re: any peeps with BRAF mutation on here?

Posted: Wed Jan 10, 2018 9:00 pm
by Zig2017
Hugs Robino keep me updated as to how you are doing. I’m in your corner! xo Mrs Z

Re: any peeps with BRAF mutation on here?

Posted: Wed Jan 10, 2018 9:16 pm
by Robino1
I hear you on that!! LOL :mrgreen:

Re: any peeps with BRAF mutation on here?

Posted: Thu Jan 11, 2018 1:34 pm
by Zig2017
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!

Re: any peeps with BRAF mutation on here?

Posted: Thu Jan 11, 2018 1:42 pm
by NHMike
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.

Re: any peeps with BRAF mutation on here?

Posted: Thu Jan 11, 2018 2:39 pm
by O Stoma Mia
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

Re: any peeps with BRAF mutation on here?

Posted: Thu Jan 11, 2018 2:56 pm
by Robino1
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 }}}

Re: any peeps with BRAF mutation on here?

Posted: Thu Jan 11, 2018 4:01 pm
by susie0915
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.

Re: any peeps with BRAF mutation on here?

Posted: Thu Jan 11, 2018 5:21 pm
by Zig2017
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....

Re: any peeps with BRAF mutation on here?

Posted: Thu Jan 11, 2018 5:27 pm
by Zig2017
Yikes! I better reassess. My score was in the shitter on that quiz. Spa day?

Re: any peeps with BRAF mutation on here?

Posted: Sat Jan 13, 2018 9:21 am
by Zig2017
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

Re: any peeps with BRAF mutation on here?

Posted: Sat Jan 13, 2018 9:25 am
by Zig2017
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!

Re: any peeps with BRAF mutation on here?

Posted: Sat Jan 13, 2018 1:25 pm
by Robino1
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.

Re: any peeps with BRAF mutation on here?

Posted: Sat Jan 13, 2018 2:17 pm
by Zig2017
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.

Re: any peeps with BRAF mutation on here?

Posted: Wed Jan 17, 2018 6:45 am
by Zig2017
Robino checking in on you this morning to see how you are doing. Hope you have a good day!

Re: any peeps with BRAF mutation on here?

Posted: Wed Jan 17, 2018 8:50 am
by Robino1
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.