NEW THREAD FOR LOVED ONES LEFT BEHIND ONGOING

Please feel free to read, share your thoughts, your stories and connect with others!
Zig2017
Posts: 139
Joined: Tue Sep 26, 2017 12:26 pm

Re: NEW THREAD FOR LOVED ONES LEFT BEHIND ONGOING

Postby Zig2017 » Sat Feb 17, 2018 11:13 pm

Hi everyone, Lee recommended this thread as my husband passed yesterday from this lousy disease. He’s free and with his Lord now. I’m shocked at the range of emotions I’ve experienced in 24 hours, but after 7 months trying to get ahead of this thing my beautiful, handsome husband just had to go. He’d been through a lot in a short time. I had started the “Any Peeps with BRAF mutation” thread and was so touched by the love and support. I wasn’t on here long, but appreciate all of your help during this time. It’s going to be an adjustment and I’ll have my moments, but I’m here and will have to start again. Word of advice I said to myself, no rash decisions for the first year. I will have to move though. I miss him already!
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

Brearmstrong
Posts: 51
Joined: Sun Mar 26, 2017 3:24 pm
Location: CT

Re: NEW THREAD FOR LOVED ONES LEFT BEHIND ONGOING

Postby Brearmstrong » Tue Feb 20, 2018 3:32 pm

My heart is breaking for you. I'm so sorry but words don't really help with this. I find myself visualizing my family when I'm gone and what they will do and if my husband will remarry and how I will never get to spend my retirement money or grow old with him. It's just so hard and now you are doing what all our caregivers dread doing. I know everyone tells me to stay positive but it's hard with a bad mutation and aggressive cancer. I see survivors long term tend to have "easier mutations" or just one lung or liver met that can be removed. I'm so happy for them but likely I will never see NED again and will be on chemo until it stops working. I feel for you, you didn't get enough time. I hope each day is a little brighter and know that he is never truly leaving you.

-Brenda
45 F Jan 17 Mom to two boys
tumor in appendix, through colon wall
Mucinous Adenocarcinoma 4cm
mod diff G2 T4aN2
nodes 8/50
CEA 4.6 after surgery < .05
margins clear
KRAS G12D
FOLFOX Apr-sep 17
Clean CT scan Jul 2017 watching one small lung nodule 4mm, clean CT oct 17, CEA 3.4, nov 17 CEA 8.1.
Oct 2017 clean CT 4mm lung nodule stable, new 2 mm nodule.
Nov 17 PET para aortic nodes uptake. Stage IV
Folfori w/avastin Dec 17 CEA 7.1
May 18- surgery to remove para aortic nodes- 5 positive

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

Re: NEW THREAD FOR LOVED ONES LEFT BEHIND ONGOING

Postby Zig2017 » Wed Feb 21, 2018 12:38 pm

Hi Brenda,
My husband of course had feelings of anger and sorrow. He wanted to someday retire with me and go to Arizona or someplace warm. It is very hard on someone going through treatment. I see that you are KRAS. We went to Sloan Kettering because he had the BRAF and honestly can’t say enough about the compassion, professional care he received. I will be praying for your treatment to keep your beast at bay, and to get to stable or better yet NED! It is discouraging for people going through treatment and hear of a progression. They are coming out fast and furious with targeted therapies. I have to go back and see, but if you are MSI there’s therapies for that also. I’m sending warmest wishes and hugs to you as I know it’s hard to keep these thoughts away. I used to tell my husband one step at a time, that’s all we can do! I have to add he had an unusual andenosquamous cancer which was also aggressive so he had a couple of things going on that made it difficult to treat. Please try to take care of yourself and allow others to help. People want to show their love that way. All my best, 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

Lee
Posts: 5557
Joined: Sun Apr 16, 2006 4:09 pm

Re: NEW THREAD FOR LOVED ONES LEFT BEHIND ONGOING

Postby Lee » Wed Feb 21, 2018 1:10 pm

Hi Brenda,

I am so sorry to read your post. Have you checked out immunotherapies? Don't know if you know much about Beansmama. Every chemo failed her, Keytruda was the only thing that worked for her. Got her to surgery, and Larry was dead thanks to Keytruda. Yes she died from a blood clot, butt as Writer Girl put it, she was NED.

There is another thread about Celine who had months to live and is NED today thanks to immunotherapy. Here is her on going thread

viewtopic.php?f=1&t=49736

Hugs to you and Mrs. Ziggy

Lee
rectal cancer - April 2004
46 yrs old at diagnoses
stage III C - 6/13 lymph positive
radiation - 6 weeks
surgery - August 2004/hernia repair 2014
permanent colostomy
chemo - FOLFOX
NED - 10 years and counting!


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