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by Zig2017
Tue Feb 13, 2018 8:26 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: any peeps with BRAF mutation on here?
Replies: 193
Views: 66179

Re: any peeps with BRAF mutation on here?

Robino you’re not hijacking the thread! I want to hear about grand babies, visits, family and Florida! You sound like you have a very full life with activity and lots of grand kids! So much fun! I wanted to ask, is Florida warm right now? Just wondering how it is in the winter. I’ve been there a few...
by Zig2017
Mon Feb 12, 2018 6:29 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: any peeps with BRAF mutation on here?
Replies: 193
Views: 66179

Re: any peeps with BRAF mutation on here?

Mr Ziggy and all of you are hero’s. He puts up with a lot from medicine and side affects which I don’t know I could do. I’ve had chemo and it’s tough. But for people with metastatic disease it’s ongoing they don’t get a break. With doctors trying this or that, trying to figure out what will work. Ev...
by Zig2017
Sat Feb 10, 2018 6:11 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: any peeps with BRAF mutation on here?
Replies: 193
Views: 66179

Re: any peeps with BRAF mutation on here?

Thanks everyone, I do share sometimes in the hope someone can relate. I wish everyone the best! We learn from each other.
by Zig2017
Sat Feb 10, 2018 9:02 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: any peeps with BRAF mutation on here?
Replies: 193
Views: 66179

Re: any peeps with BRAF mutation on here?

NH Mike how are you doing? You’ve been through so much too. I’m only strong because I’m in crisis mode and don’t have a choice I just pray and leave it in Gods hands and do what I can. Maybe I should hold back on what’s happening, I really don’t want to upset anyone. Everyone here is going through t...
by Zig2017
Fri Feb 09, 2018 8:34 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: any peeps with BRAF mutation on here?
Replies: 193
Views: 66179

Re: any peeps with BRAF mutation on here?

MHF you are an amazing wife. We don’t realize how much of our time is spent as patient advocates to our hubs and loved ones. So much can be mistaken info in a hospital or clinic setting but we keep all the records etc. in order. Behind the scenes, but right next to our loved ones. My mother in law m...
by Zig2017
Tue Feb 06, 2018 12:51 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: any peeps with BRAF mutation on here?
Replies: 193
Views: 66179

Re: any peeps with BRAF mutation on here?

Rubbing legs toward heart... god I hate auto correct!!!
by Zig2017
Tue Feb 06, 2018 12:50 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: any peeps with BRAF mutation on here?
Replies: 193
Views: 66179

Re: any peeps with BRAF mutation on here?

MHF good suggestions all! I have been lightly tubing legs up toward heart. Oddly right now not a lot of carbs, he gets chicken with rice or a bit of Mac and cheese which he loves. He also loves yogurt so that as well. He’s also drinking tons of water but don’t know if that hurts the situation or not...
by Zig2017
Mon Feb 05, 2018 1:22 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: any peeps with BRAF mutation on here?
Replies: 193
Views: 66179

Re: any peeps with BRAF mutation on here?

Hi Orlar, Thank you for the prayers. I definitely hope and pray good ol’ Irinotecan will help for those of you on it and Mr Ziggy. Glad you got out, I’m hoping he will start socializing a bit soon. We have to get the feet and leg swelling under control, and I have to ask about the obstructed ureter ...
by Zig2017
Sat Feb 03, 2018 8:20 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: any peeps with BRAF mutation on here?
Replies: 193
Views: 66179

Re: any peeps with BRAF mutation on here?

Get past it you will Robino. We have to take it one step at a time. Right now I’m going day by day and so is Mr Ziggy. It is peaks and valleys we celebrate when he feels good and call the doctor when he doesn’t. Right now with everything a mess and financial worries I pray a lot and then do what I c...
by Zig2017
Fri Feb 02, 2018 10:17 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: any peeps with BRAF mutation on here?
Replies: 193
Views: 66179

Re: any peeps with BRAF mutation on here?

Robino, don’t be disheartened, did they go up a lot? What is doctor saying? Sometimes I just hate those markers! They’ve gone down on Mr Ziggy but obviously it didn’t correspond with what was happening. I’m praying they start dropping like a rock for you Robino, please let me know what happens!
by Zig2017
Fri Feb 02, 2018 7:07 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: any peeps with BRAF mutation on here?
Replies: 193
Views: 66179

Re: any peeps with BRAF mutation on here?

Thank you for the well wishes LPL! All my best to you also! He had the Irinotecan yesterday and did very well. He is too weak to walk far so they always have a wheel chair for us. Such great staff. No vomiting! I’m hoping he tolerates it well and is able to see results. We meet with his doctor Tuesd...
by Zig2017
Wed Jan 31, 2018 10:56 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: any peeps with BRAF mutation on here?
Replies: 193
Views: 66179

Re: any peeps with BRAF mutation on here?

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 ...
by Zig2017
Wed Jan 31, 2018 6:42 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: any peeps with BRAF mutation on here?
Replies: 193
Views: 66179

Re: any peeps with BRAF mutation on here?

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.
by Zig2017
Wed Jan 31, 2018 6:39 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: any peeps with BRAF mutation on here?
Replies: 193
Views: 66179

Re: any peeps with BRAF mutation on here?

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. Pe...
by Zig2017
Tue Jan 30, 2018 7:52 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: any peeps with BRAF mutation on here?
Replies: 193
Views: 66179

Re: any peeps with BRAF mutation on here?

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. P...

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