I have less than a year to live

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Joecool1983
Posts: 40
Joined: Sat Jun 11, 2016 12:45 pm
Facebook Username: Joseph Piazzola

I have less than a year to live

Postby Joecool1983 » Wed Jul 18, 2018 12:31 am

So, I met with my surgeon yesterday. 4 months after having Liver Resection Surgery and thinking I was in the clear, I got the news that the Cancer is back. I have new metastatic activity/tumors in my peritoneum and diaphragm. My surgeon said without any further treatment, I probably have less than a year to live. He immediately got me seen by the Medical Oncologist who works down the hall from him. Starting next week, my new Medical Oncologist has me starting on Stivarga. Anyone have any experience with Stivarga they could share with me?
Diagnosed 12/17/15- 32 years old- Tumor 3"x1.5" at the Rectosigmoid Colon
Stage IIIA T3N1M0
Radiation and chemotherapy(Xeloda pill form) January 2016- February 2016
4/11/16- Surgery to remove the tumor/colon resection. Robotic LAR/Dissection of Lymph Node. 1/19 showed any involvement
5/16-10/16- Follow up chemotherapy- FOLFOX, 8 Treatments
1/17- Routine CT scan found 3 Metastases on my Liver
4/17-8/17- 5 Treatments Avastin/Irinotecan

User avatar
CRguy
Posts: 9565
Joined: Sun Feb 10, 2008 6:00 pm

Re: I have less than a year to live

Postby CRguy » Wed Jul 18, 2018 12:46 am

Sorry for the new challenges my friend
this search should have some info which may help you

search.php?keywords=stivarga&fid%5B0%5D=1

Best wishes
CRguy
Caregiver x 3
Stage IV A rectal cancer/lung met
11 Year survivor
my life is an ongoing totally randomized UNcontrolled experiment with N=1 !
Review of my Journey so far

DAS43
Posts: 49
Joined: Thu Aug 18, 2016 8:10 pm

Re: I have less than a year to live

Postby DAS43 » Wed Jul 18, 2018 1:36 pm

Please consider a trial at NIH. I am a partial responder and sleen is NED. We both did the TIL trial there. U can find lots of information on here about it.
11/13 total blockage DX colon cancer IV, colostomy
1/14 folfox
3/14 liver resection NED
8/14 last chemo
12/14 colostomy reversal
8/16 3mets to lungs
10/16 trial at NIH TIL
9/17 partial responder to TIL protocol

DAS43
Posts: 49
Joined: Thu Aug 18, 2016 8:10 pm

Re: I have less than a year to live

Postby DAS43 » Wed Jul 18, 2018 1:38 pm

Here is the link to sleen post. viewtopic.php?t=49736
11/13 total blockage DX colon cancer IV, colostomy
1/14 folfox
3/14 liver resection NED
8/14 last chemo
12/14 colostomy reversal
8/16 3mets to lungs
10/16 trial at NIH TIL
9/17 partial responder to TIL protocol

mhf1986
Posts: 134
Joined: Sat Mar 11, 2017 8:30 pm
Location: near DC

Re: I have less than a year to live

Postby mhf1986 » Wed Jul 18, 2018 4:26 pm

DH is on Vectabix and getting a great response...I don't see that in your sig...did you try it?
Caregiver to DH, dx @ 50, mets to liver/lungs/lymphs, MSS, quad wild
10/16: CEA 114, partial blockage, left hemi, perm. colostomy
11/16: port in, FOLFOX+Avastin
4/17: CEA 11
6/17: CEA 15, 5FU+A only due to neuropathy
11/17: CEA 38, CAPOX+A
12/17: CEA 29
1/18: CAPOX caused hi bilirubin/bad hfs, back to FOLFOX+A
5/18: growth + ascites; 6.4 bilirubin, change to Vectibex/Irinitecan
8/18: .9 bilirubin, CEA 31, shrinkage/no ascites

Capri
Posts: 62
Joined: Thu Apr 19, 2018 5:59 pm

Re: I have less than a year to live

Postby Capri » Wed Jul 18, 2018 5:03 pm

I'm sorry to hear this rough news. I am sending good vibes and prayers your way.
Mom to son 46 yo at Dx (2017)
9/17 rectal bleeding
12/17 colonoscopy sigmoid tumor; CT & MRI chest, abd,& pelvis clear; CEA normal
1/18 Robotic resection, Path: adenocarcinoma, Stg. IIIA T3 N1 MX, mod. differentiated, margins clear
2/18 Port placed; 2/26/18 Begins FOLFOX
6/18 On Early surveillance CT 2 liver hemangiomas, PET scan-nothing "lit up"
Neuropathy has started.
7/30/18 Completed 12 cycles of FOLFOX.

DarknessEmbraced
Posts: 3080
Joined: Sat Nov 01, 2014 4:54 pm
Facebook Username: Riann Fletcher
Location: New Brunswick, Canada

Re: I have less than a year to live

Postby DarknessEmbraced » Sat Jul 21, 2018 11:01 am

I'm sorry it wasn't better news and hope your treatment goes well!*hugs*
Diagnosed 10/28/14, age 36
Colon Resection 11/20/14, LAR (no illeo)
Stage 2a colon cancer, T3NOMO
Lymph-vascular invasion undetermined
0/22 lymph nodes
No chemo, no radiation
Clear Colonoscopy 04/29/15
NED 10/20/15
Ischemic Colitis 01/21/16
NED 11/10/16
CT Scan moved up due to high CEA 08/21/17
NED 09/25/17

Joecool1983
Posts: 40
Joined: Sat Jun 11, 2016 12:45 pm
Facebook Username: Joseph Piazzola

Re: I have less than a year to live

Postby Joecool1983 » Mon Jul 23, 2018 1:21 am

mhf1986 wrote:DH is on Vectabix and getting a great response...I don't see that in your sig...did you try it?


Haven't been on anything since I quit the Irinotecan last August. I was having severe nausea, vomiting, and diarrhea, even at half the dose. It was extremely toxic to me. I chose to quit because it was making my quality of life horrible. What's the point in taking chemotherapy if you are going to be extremely ill and not be able to enjoy life and it's not having any effect on the Cancer at all? You know? I just wanted to not be sick and enjoy my life.
Diagnosed 12/17/15- 32 years old- Tumor 3"x1.5" at the Rectosigmoid Colon
Stage IIIA T3N1M0
Radiation and chemotherapy(Xeloda pill form) January 2016- February 2016
4/11/16- Surgery to remove the tumor/colon resection. Robotic LAR/Dissection of Lymph Node. 1/19 showed any involvement
5/16-10/16- Follow up chemotherapy- FOLFOX, 8 Treatments
1/17- Routine CT scan found 3 Metastases on my Liver
4/17-8/17- 5 Treatments Avastin/Irinotecan

Nextgen
Posts: 26
Joined: Sun Aug 07, 2016 12:38 pm

Re: I have less than a year to live

Postby Nextgen » Tue Jul 24, 2018 1:03 pm

May God bless you with hope everyday. My prayers always with you. God mercy cure and heal on you!
My mum 55yr on first diagnosis
Dx cc T3N2bM0 on Dec2011 CEA5.0, extended right hemicolectomy Dec2011, 12x Folfox CEA1.9,
Liver mets on Feb2014 CEA6.4, liver resection on May2014, 8x xeloda+cetuximab CEA2.8,
CT scan shows eccentric bowel wall thickening of rectosigmoid region Jul2016 CEA1.8
Colonoscopy on Aug2016 NED
CT on Mar2018 NED
CEA 1.4 Nov2016
CEA 1.5 Mar2017
CEA 2.1 Jun2017
CEA 1.1 Aug2017
CEA 2.7 Nov2017
CEA 1.3 Dec2017
CEA 1.8 Mar2018
CEA 1.8 Jun2018
God have mercy, bless & save mum! Amen!

mhf1986
Posts: 134
Joined: Sat Mar 11, 2017 8:30 pm
Location: near DC

Re: I have less than a year to live

Postby mhf1986 » Tue Jul 24, 2018 7:33 pm

Totally get not wanting to be ill all the time. FOLFOX was a chore for DH, bone tired, ill feeling, diarrhea, etc. He started Vectabix aka p-mab (an EGFR therapy) in May and the only side effect is the face/chest rash. He looks like he's 16 again with zits but I don't care what he looks like. The nurse called the rash "stable" today. He coats everything with Eucerin lotion twice a day, takes an antibiotic, and wears a fedora when outside. The liver tumors grew from January to May scan and the July scan showed they have now shrunk to January size again.

We went out to dinner Saturday night and are headed out of town for a long weekend Thursday. He works every day but treatment day. P-mab is soooooo much easier than FOLFOX. There's no go-home bag and it only takes an hour infusion. DH doesn't even take pre-meds with it. He is doing 66% irinitican 1x a month (with premeds) with p-mab 2x a month.

He has also discussed proton therapy with his dr which they may employ on the liver tumors later...idea? There's another gent on this forum who has used that with success.

But as I always say to DH...what FEELS right to YOU?
Caregiver to DH, dx @ 50, mets to liver/lungs/lymphs, MSS, quad wild
10/16: CEA 114, partial blockage, left hemi, perm. colostomy
11/16: port in, FOLFOX+Avastin
4/17: CEA 11
6/17: CEA 15, 5FU+A only due to neuropathy
11/17: CEA 38, CAPOX+A
12/17: CEA 29
1/18: CAPOX caused hi bilirubin/bad hfs, back to FOLFOX+A
5/18: growth + ascites; 6.4 bilirubin, change to Vectibex/Irinitecan
8/18: .9 bilirubin, CEA 31, shrinkage/no ascites


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