Need Support - Told today I'm on Palliative Care

Please feel free to read, share your thoughts, your stories and connect with others!
mariane
Posts: 675
Joined: Sun Sep 13, 2015 6:16 pm

Re: Need Support - Told today I'm on Palliative Care

Postby mariane » Mon Jul 29, 2019 2:28 pm

Good luck! I signed palliative care papers 4 years ago. My twins were 6 and I was 40. I am still here, doing good. I wish you best of luck!
mom of now 10 years old twins, dx @ 40 in 6/2015 with upper rectal cancer, 10+ liver mets, CEA 140
chemo: 8/2015 - 10/2016 - 4xFOLFIRINOX, 2xFOLFOX, 8xFOLFIRI, 10x5FU, HAI pump -12xFUDR
4 surgeries, complete pathological response
CEA<2 since 10/2015
NED since May 2016

I praise God for every day with my family!

tbt4snow
Posts: 26
Joined: Sat Oct 27, 2018 3:16 pm
Facebook Username: Tina tran

Re: Need Support - Told today I'm on Palliative Care

Postby tbt4snow » Wed Aug 21, 2019 5:57 am

Hi Nynessie,
You under went a huge surgery, I Hope all is well for you. Let us know how you are doing when you are up to it.
Take care.
DX: CC stage 4/w ovaries & omentum mets in 12/17 49/F
High grade pT3N1bM1b sigmoid Adenocarcinoma colon
MSS-h TMB=16, NRAS-mutant
Lymph nodes: 1/2 left colic; 3/8 regional
12/2017: Exploratory laparotomy & resect of sigmoid & ovaries
Folfox/avastin 12 sessions from 1/8-6/18. 6/18 CEA 2.1
1/19: CT shows peri mets;
CEA: 12/18 5.1, 1/7/19 7.9; 1/15/19 9.1; 1/30/19: 10.6
4/3/2019 CRS/HIPEC after 4 Folfiry sessions...

nynessie
Posts: 17
Joined: Mon Jun 25, 2018 1:39 pm

Re: Need Support - Told today I'm on Palliative Care

Postby nynessie » Sat Sep 07, 2019 7:34 am

One month ago I had my CRS-HIPEC surgery. Cannot believe it's been a month already.

So far nothing to report, except that my husband tells me that when the surgeon came out to see him afterward, he said things went well and he was positive he'd gotten 99% of it. It was a long surgery - I went in at 8am, and my husband said the doctor came out around 8-8:30pm. Paul was able to see me once I got into the ICU at 10:30pm. He deserves a medal. He said the hardest part was the lack of progress reports all day.

I am looking forward to seeing Dr. Cusack on Monday, and will also see my oncologist Dr Jeff Clark. I'm not sure about everything that was done - though know it included sigmoid, liver, small intestine, diaphragm resections with a complete hysterectomy. I've an incision a little longer than 13 inches with about 48 staples.

I am doing well, at least with the PT and napping parts. :)

Thanks for everyone's support, and I will update next week.
06/2018 KRAS negative for mutation; PDL1 negative, CEA 22.7
07/2018 - 07/2019 -- 5 rounds FOLFOX; 19 rounds FOLFIRI
08/05/2019 CEA 2.9; CA125 13; CA19-9 113
** 08/07/2019 CRS/HIPEC surgery (PCI 25 pre-op; 4 post-op)
09/09/2019 CA19-9 13 :)

User avatar
juliej
Posts: 3036
Joined: Thu Aug 05, 2010 12:59 pm

Re: Need Support - Told today I'm on Palliative Care

Postby juliej » Mon Sep 09, 2019 4:44 pm

nynessie wrote:One month ago I had my CRS-HIPEC surgery. Cannot believe it's been a month already.

So far nothing to report, except that my husband tells me that when the surgeon came out to see him afterward, he said things went well and he was positive he'd gotten 99% of it. It was a long surgery - I went in at 8am, and my husband said the doctor came out around 8-8:30pm. Paul was able to see me once I got into the ICU at 10:30pm. He deserves a medal. He said the hardest part was the lack of progress reports all day.

I am looking forward to seeing Dr. Cusack on Monday, and will also see my oncologist Dr Jeff Clark. I'm not sure about everything that was done - though know it included sigmoid, liver, small intestine, diaphragm resections with a complete hysterectomy. I've an incision a little longer than 13 inches with about 48 staples.

I am doing well, at least with the PT and napping parts. :)

Thanks for everyone's support, and I will update next week.

Thinking about you today and hoping you get a good report from your surgeon and oncologist. You might ask for a copy of the pathology report so you can see what all was removed, extent of clear margins, etc.

I had 54 staples so I know how you feel! It looked like I had a giant zipper going from my breastbone to my pubic bone! :D

Eat lots of protein to speed up the healing process. You are right about your husband deserving a medal. I think it's hardest on the ones in the waiting room. We sleep through the whole thing! :D

Juliej
Stage IV, liver/lung mets 8/4/2010
Xelox+Avastin 8/18/10 to 10/21/11
LAR, liver resec, HAI pump 11/11
Double lung surgery + ileo reversal 2/12
Adjuvant Xeloda 3-9/12
VATS rt. lung 12/21/12 - benign granuloma!
NED 3/17/12 to 6/13/2019, CEA<1


Return to “Colon Talk - Colon cancer (colorectal cancer) support forum”



Who is online

Users browsing this forum: No registered users and 13 guests