Stage IV 2 years later... keeping the HOPE

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HopeForJesse
Posts: 249
Joined: Wed Feb 24, 2016 9:39 am
Location: Philadelphia

Stage IV 2 years later... keeping the HOPE

Postby HopeForJesse » Thu Dec 07, 2017 9:50 pm

It's been awhile since I posted but just wanted to add HOPE for any newbies.

2years post diagnosis for DH
Surgeries all over 1 year ago
Chemo rounds - too many to count- pretty much every 2 weeks for 2 years with longest break of 3 months a year ago
At least a dozen fun trips both home and abroad since diagnosis
Another new puppy
Son graduated college and daughter graduating in May

We are in a new norm. Yes, still scared for what lies ahead but hopeful to somehow still remain a few steps ahead of this dreadful disease and live In the present. Original prognosis was 2 years, if lucky. Still defying that!

Thankful for our doctors and for this group and many others!!!

I am borrowing this from a Facebook support site and hope that is okay. Just found it to be an extremely helpful and encouraging post listing the MANY options available. Hope it helps others as it helped us.

Credits to JD:
Chemo- 2 to 3 main lines, Folfox, Folfiri, Folfoxiri.
Erbitux/Vecitibix depending on Kras status.
Xeloda (maintenance) and Xeliri
Avastin ( not chemo)
Post-chemo oral lines- Lonsurf and Stivarga ( not great, but buy time)
Open surgery
VATS surgery
Laser assisted surgery (lungs)
Open ablation (during surgery)
Non surgical ablation
y90 (liver mets)
HAI pump (liver mets)
SBRT/Cyberknife
Proton Therapy
Off-label immunotherapy
Various clinical trials
Off-label drugs (prescription)
Off-label chemo ( for other cancer, active against CRC)
Supplements
DH DX 01/16 49 YO inop RC stage IV liver mets
MSS TP53 APC,BRCA2
12/15 CEA 241, FOLFOX to 11/16
LAR/ileo 5/16 Clear margins 1/29 nodes
HAI, reversal, liver resections7/16
FUDR 8/16 -NED 3 mos
Rising CEA 3/17 Xeloda, 5/17 -12/17 Erbitux & Iri stable but lung/lymph mets CEA 2.7
5/18 5 days SBRT radiation to sternum 10/22/18 surgery to remove zyphoid process met
6/11/19 5FU added to cetuximab and irinotecan CEA 16
Ephesians 3:20 Our God is able to do immeasurably more than we can ask or imagine!

Lee
Posts: 6207
Joined: Sun Apr 16, 2006 4:09 pm

Re: Stage IV 2 years later... keeping the HOPE

Postby Lee » Sun Dec 10, 2017 5:56 pm

Thank you for the updated, so sorry this thread was over looked. Two years is a VERY good sign. Here's hoping, DH always resides in NEDville.

Bumping this back up to the top for I know we have a few new people.

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!

stu
Posts: 1613
Joined: Sat Aug 17, 2013 5:46 pm

Re: Stage IV 2 years later... keeping the HOPE

Postby stu » Sun Dec 10, 2017 6:26 pm

Great to hear you are having lots of good times enjoying your family together . My mum has taken that approach and we firmly believe today matters as much as tomorrow .
Here’s to many more good days . Sending our love to you and thank you for updating . It means so much to us .
Stu
supporter to my mum who lives a great life despite a difficult diagnosis
stage4 2009 significant spread to liver
2010 colon /liver resection
chemo following recurrence
73% of liver removed
enjoying life treatment free
2016 lung resection
Oct 2017 nice clear scan . Two lung nodules disappeared
Oct 2018. Another clear scan .

DarknessEmbraced
Posts: 3816
Joined: Sat Nov 01, 2014 4:54 pm
Facebook Username: Riann Fletcher
Location: New Brunswick, Canada

Re: Stage IV 2 years later... keeping the HOPE

Postby DarknessEmbraced » Sun Dec 10, 2017 6:53 pm

I'm glad you are having many fun trips and hope his chemo 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
NED 12/21/18
Clear colonoscopy 09/23/19
Clear 5 year scans 11/21/19- Considered cured! :)

mariane
Posts: 704
Joined: Sun Sep 13, 2015 6:16 pm

Re: Stage IV 2 years later... keeping the HOPE

Postby mariane » Sun Dec 10, 2017 9:49 pm

Mary,
Thank you for your message. I think about you and Jesse every day.
Who knows, maybe one of this new trials will be able to open the door to cure wider.
It is so good to see little snow flake stars on this cool winter day. So many beautiful, little things each day.
I keep you in my prayers.
mom of now 14 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!

User avatar
henry123
Posts: 218
Joined: Sun Oct 08, 2017 3:25 am

Re: Stage IV 2 years later... keeping the HOPE

Postby henry123 » Sun Dec 10, 2017 11:24 pm

Stay the course. Enjoy every moment.

Miracles do happen. I believe that now.

Best wishes.
46yo M msi-high Lynch +ve
5/16 lap AR 14/21 L nodes +ve
T4N2M1
7/16 Capox 9 cyc
9/16 cea 2
1/17 550
PET CT mets in lung & peri
iri+ avast fail
3/17 10577
4/17 regro fail
5/17 cea 28800
5/17 CT inc in size of mes nodes ,onset of multi nodules in liver
6/17 Opdivo start
7/17 26754
8/17 5623
9/17 497
10/17 52
CT all clear exc a nodule in Lung. liver norm
1/18 3.6
Aspirin start
6/18 1.5 CT clear
12/18 1.1 NED
1/20 NED Opdivo stop
8/23 1.0 All ok


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