NEW THREAD FOR LOVED ONES LEFT BEHIND ONGOING

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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: 100
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
48 F Jan 17 2 sons
tumor appendix/colon
Muc Adeno 4cm
mod diff G2 T4aN2
nodes 8/50
CEA 4.6 after surgery <.05
KRAS G12D MSS
FOLFOX Apr-sep 17
Clean CT Jul 2017, oct 17, CEA 3.4, 8.1. May 18 2.3,1.0,1.3, 1.3, 1.0, 2.3, 2.2, 2.1,2.2,1.6,1.4,1.5,2.8,2.2
Oct 2017 clean CT
Nov 17 PET para aortic nodes Stage IV
Folfori w/avastin Dec 17
May 18- surgery on nodes xeloda continues
Aug 18-CT NED Clear CT's Nov 18-May 20
July 20- it’s back! Rt ovary Full hysterectomy CEA 1.7 chemo break

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: 6202
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 - 16 years and counting!


Kellythewarrior
Posts: 3
Joined: Tue Apr 24, 2018 1:16 am
Facebook Username: Kelly.huffmanneal

Re: NEW THREAD FOR LOVED ONES LEFT BEHIND ONGOING

Postby Kellythewarrior » Tue Jul 07, 2020 2:26 am

I lost Bruce last week. He was fine. Dancing and OK. His markers had been climbing. But he was good. Then he had some constipation. The pain got worse, called 911 when he felt short of breathe. Perforated bowel. They waited hours to CT and COULDNT find a surgeon who would do it. Finally hours and hours later I found one who would try. But, it was already too late. The self blame I am going through is beyond anything i can take. Anyone have any advice for me?
My husband Bruce age 41 when Dx 9/17
Stage IV CC mets to liver CEA 106 CA19-9 2500.
10/17 BRAF mutation found
10/17-12/17 FOLFOXIRI plus Avastin.
Stopped breathing from Oxali dec 2017 switched to FOLFIRI
5/18 CEA 3.0 CA19-9 48. Guardant testing showed low mutation load in cell free DNA.
6/18-1-19 5FU plus Avastin every 3-4w.
Cea around 4. Jan 19 scans show everything has shrunk!!!
Round 23 chemo coming up!

brokenwings
Posts: 127
Joined: Mon Jan 07, 2019 1:50 am

Re: NEW THREAD FOR LOVED ONES LEFT BEHIND ONGOING

Postby brokenwings » Mon Jul 13, 2020 5:38 am

Hi Kelly,

I'm so terribly sorry for what you're going through... There are really no words for making it better.

I'll just say that Avastin is a nasty drug. I know it's a very popular drug in the US and continental Europe but its side effects can be devastating. I personally developped a fistula thanks to Avastin. I could have died. My bowel tore and poop started coming out of my laparotomy scar. A terrifying experience. Unfortunately, I'll keep this fistula for the rest of my life.

I spoke to a colo-rectal surgeon from a very reputable American facility. He hates Avastin (his words literally). He told me that when he's on call he has at least one perforated bowel a week that he has to repair. He said that oncologists prescribe Avastin because it's the surgeons who have to deal with its side effects, not the oncs.

The benefit of Avastin is very modest. If you check the Bevacizumab website you'll see how little effect it has compared to chemo alone...

Again, I'm really sorry for your tragic loss. There are some private Facebook groups for those who lost a loved one...
If I can be of any help, send me a PM.

Lots of hugs.

Paola
DX 2019 Adenocarcinoma Sigmoid colon. PC + ovarian met.
Obstruction. Temporary colostomy.
Folfirinox + Avastin: 6 cycles. Scans: partial response.
Surgery (CRS + HIPEC) 04/29: too much disease, surgery cancelled. Right ovary removed.
2nd ptotocol: IP chemo (oxaliplatin) + IV chemo (Folfiri + Avastin). 8 cycles
10/31/2019: 11 hour-long Hipec + 6 weeks in hospital
12/30/2019: liver met
02/05/2020: reversal surgery. New peri mets discovered
March 2020: 5fu+Avastin
May 2020: fistula
Back to 1957: 5fu.

bitchslapped
Posts: 1534
Joined: Tue Sep 09, 2014 3:23 pm
Location: PNW/USA

Re: NEW THREAD FOR LOVED ONES LEFT BEHIND ONGOING

Postby bitchslapped » Thu Jul 16, 2020 1:03 pm

I call that the caregiver curse. Have it myself & is really tough to shake. Some things are just out of our control & not possible to anticipate all & any scenarios. You tried to help your DH best you could. Your grief so fresh, strong right now & probably still in shock & your DH way too young.
Sending you my deepest sympathies for your great loss & your pain.

BS

Paola: I have never heard that about Avastin before.
DSS,35YO,unresect mCRC DX 7/'14,lvr,LN,peri,rib
FOLFOX+Avstn 4 Rnds d/c 10/'14
Stent 9/'14
FOLFIRI+Avstn 10/'14
Gone From My Sight 2/20/15
Me:garden variety polyps + precancerous polyp, diverticulitis
Carergver x2 DH,DM dbl occupancy,'03-'10
DH dx 47YO mCRC,'04-'07 fried x HAI
DM dx CC 85YO,CC,CHF,stroke,dementia,aphasia

brokenwings
Posts: 127
Joined: Mon Jan 07, 2019 1:50 am

Re: NEW THREAD FOR LOVED ONES LEFT BEHIND ONGOING

Postby brokenwings » Sun Jul 19, 2020 4:45 am

Hi BS,

I know. It's terrible that doctors don't disclose this type of information and the little benefit this (very expensive) drug has.

We should be aware of the risks...
DX 2019 Adenocarcinoma Sigmoid colon. PC + ovarian met.
Obstruction. Temporary colostomy.
Folfirinox + Avastin: 6 cycles. Scans: partial response.
Surgery (CRS + HIPEC) 04/29: too much disease, surgery cancelled. Right ovary removed.
2nd ptotocol: IP chemo (oxaliplatin) + IV chemo (Folfiri + Avastin). 8 cycles
10/31/2019: 11 hour-long Hipec + 6 weeks in hospital
12/30/2019: liver met
02/05/2020: reversal surgery. New peri mets discovered
March 2020: 5fu+Avastin
May 2020: fistula
Back to 1957: 5fu.


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