any peeps with BRAF mutation on here?

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lkub
Posts: 18
Joined: Mon Mar 14, 2016 12:14 am

Re: any peeps with BRAF mutation on here?

Postby lkub » Sat Feb 17, 2018 10:33 am

Zig2017 wrote:Dear one,
I can’t imagine what you’re going through right now. I know it is so hard thinking about losing a life partner, and it must be even harder with children. My heart hurts for you but there is still hope and time if they are treating him. Your hubby sounds like a very strong man. The treatments aren’t easy I know. Please try to surround yourself with supportive family and friends and I hope you have someone close to share things on a spiritual level. Whether that be minister, rabbi, etc. I also think speaking openly and honestly with hubby as he goes through treatment is vital. Most of all love on him a lot. I wrote a long post here yesterday on the status of my husband’s journey, but it apparently didn’t post. My sincere love and prayers go out to you, and I’m hoping your family is trying to keep things as normal a routine as possible for the kids. I also learned if someone wants to help with kids, house, groceries and whatever, let them. They sincerely want to express love and want to help. All my love, Mrs Ziggy


Oh, the fact that you took the time to encourage me in the midst of your grief...you are a wonderful person. I didn't know he had passed when I wrote that last night. I'm so sorry.
DH-stage 3b rectal signet ring cell dx 11/15 age 41
rad/xeloda 12/15-1/16
total colectomy&ileo(jpouch created) 3/16
4/16 CEA 0.6
oxali&xeloda 3/16-8/16
clean CT 9/16 NED
10/16 reversal
4/17 CEA 1.4
10/17 CEA 44.4
10/17 CT mets to nodes peritoneum pelvis-stage 4
10/17 biopsy KRAS/BRAF/NRAS wild
11/17 port
11/17 FOLFIRI+Erbitux
1/18 Erb failed CT growth and spread,mets spine/pelvis
2/18 kidney stent ureteral obstruction
2/18 FOLFIRI+Avastin
3/18 small bowel obstruction
3/18 CEA 114
Lynch neg

User avatar
LPL
Posts: 343
Joined: Fri Apr 22, 2016 12:49 am
Location: Europe

Re: any peeps with BRAF mutation on here?

Postby LPL » Sat Feb 17, 2018 5:55 pm

Oh Dear Mrs Ziggy,
It has been a few days since I checked in here and
I’m SO SORRY to hear this news about your husband :cry:
My deepest condolences to you!
Warm Hug /L
DH @ 65 DX 4/11/16 CC recto-sigmoid junction
Adenocarcenoma pt 35x15x9mm G3(biopsi) G1(surgical)
Mets 3 Liver resectable
T4aN1bM1a Stage IVa 2/9 LN
MSS, KRAS-mut G13D
CEA & CA19-9: 5/18 2.5 78 8/17 1.4 48 2/14/17 1.8 29
4 Folfox 6/15-7/30 (b4 liver surgery) 8 after
CT: 8/8 no change 3/27/17 NED for now :D
:!: Steroid induced hyperglycemia dx after 3chemo .. hospitalized, insulin -> Metformin
Surgeries (open):
3/18 Emergency colostomy 5/23 Primary+gallbl+colostomy reversal (+port) 9/01 Liver mets

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

Re: any peeps with BRAF mutation on here?

Postby Zig2017 » Sat Feb 17, 2018 6:04 pm

LPL,thank you.im just grateful he didn’t suffer. He left this world after he came home which is what he wanted. 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 Feb 17, 2018 6:07 pm

Ikub, I wanted to send love and encouragement because I know what you’re going through. It’s a tough time for people going through treatment and it’s life changing. Not just for the person that’s sick, but the whole family. 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

User avatar
Shana
Posts: 300
Joined: Sun Jul 30, 2017 9:45 pm
Location: Sonoma, CA

Re: any peeps with BRAF mutation on here?

Postby Shana » Mon Feb 19, 2018 7:45 pm

Dear Mrs. Z,

i haven't been on here for a few days and just saw your post. I am so very sorry that your husband passed away. You're an incredibly strong woman to offer others comfort during this time of grieving. I'm glad that he didn't suffer and that he was home with you. Sending you warm hugs, may his memory be a blessing and you find comfort in those memories.

Keeping you in my thoughts.

Shana
DX - 12/16
MSS - KRAS wild
Well-differentiated adenocarcinoma at splenic flexure
Stage IV CC with liver mets
5FU - Failed twice - 1/17 and 3/17
Irinotecan + Cetuximab: 8/17
CEA 12/17 - 38.7! 1/18 - 33! 2/18-36.5 3/18-39.8
CT-Scan 9/17, 12/17, 3/18 Shrinkage of liver mets continues, no blockage
Irinotecan increased from 100 to 150 mg with tolerable side effects
Reoval & resection still on hold. Have to be stable enough to be OFF chemo one month prior and after surgery.

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

Re: any peeps with BRAF mutation on here?

Postby Zig2017 » Mon Feb 19, 2018 11:54 pm

Thank you Shana,
As I reflect on the last 3 days and all the business, I’m touched at how many people loved my husband. He was a thoughtful soul going above and beyond to help those around him. We didn’t have any children, just a cat. He was an only child with his mom still here. I’ve lost an aunt and my first cousin this year. But what we lacked in family members I’ve come to realize that we both had family in our friends. God has given me peace and sleep, and amazing help from coworkers and friends. I hope he knows how much he’s missed not only by me, but many people who were devasted by his passing and the help they’ve given his widow. Even shoveling my driveway and looking in on my mother in law while I took care of the tasks at hand. A door has closed on this part of my life but I know I will continue to love him and move forward with life. Even when I feel alone, I’m not alone. We feel sadness and grief with loss and that’s ok. Then I pick up and walk a few more steps. This will happen to everyone at some point, and as my friends husband said sometimes it sucks to be human. 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


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