Multiple reoccurrence survival stories

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hopeful1
Posts: 9
Joined: Wed Jan 21, 2015 5:39 am

Multiple reoccurrence survival stories

Postby hopeful1 » Sat Feb 02, 2019 6:24 am

Hi everyone. Have been feeling very nervous since my husband had his third reoccurrence diagnosed in November last year. It feels sometimes like we are fighting a losing battle. If there is anyone who'd like to share their multiple reoccurrence survival story I would love to hear it.
Husband diagnosed with stage III a 2013.
Bowel resection and Folfox 2013/14. CEA less than 3.
Rev ileostomy 2014.
6 monthly CT's NED 3 monthly CEA's slow increase to 5's.
PET scan NED for bowel cancer. Early stage thyroid cancer.
Thyroidectomy 2015. CEA's still in 5's. NED on CT.
2017 small liver mass. CEA 35.Liver res'n + Folfox CEA less than 3.
November 2018 CEA 18. PET scan: +ve lymph node near liver. Node resection
2019 Jan CEA 9 PET NAD, April CEA 15 - PET NAD, July CEA 21 awaiting PET

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

Re: Multiple reoccurrence survival stories

Postby stu » Sat Feb 02, 2019 8:21 am

My mum has recurred twice . Once after a liver resection then a few years later a lung resection . She is doing great . Keeps healthy and I make her walk . She does say I am becoming very bossy!
Sounds as though his recurrence was need the first liver met so many just revealing what was already there .
It has been three years since her last recurrence!!
Keep going ,
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 .

User avatar
Jack&KatiesMommy
Posts: 640
Joined: Wed Dec 21, 2011 1:08 pm
Location: Columbus, OH

Re: Multiple reoccurrence survival stories

Postby Jack&KatiesMommy » Sat Feb 02, 2019 10:43 pm

Me! I was diagnosed Stage IV in August 2011 and I have had a number or recurrences (lungs and then lymph nodes). Happily NED with immunotherapy!
Cynthia
Cynthia
Mommy to Jack (8) now (18) and Katie (4) now (14)
(My Most Precious Things)
Dx 8/11 Stage IV CRC (liver mets) CEA 2,600+
9/11 Folfiri 2/12: Failed Liver Resection
5/12 HAI pump/removed primary
4/13 Liver Resection
8/13-12/15 (10) RFAs lungs
5/17: Upper Left Lobe of lung resected.
02/18: 3 new lymph mets lung
05/18: Keytruda (MSS w/Intermediate TMB): NED CEA: 66.4, 39.2, 23.8, 13, 3.5 1.8, 1.0, 2.8 3.9, 5.0, 5.6, 1.5, .8,

hopeful1
Posts: 9
Joined: Wed Jan 21, 2015 5:39 am

Re: Multiple reoccurrence survival stories

Postby hopeful1 » Tue Feb 05, 2019 2:31 am

Thanks for posting your stories. :D
Husband diagnosed with stage III a 2013.
Bowel resection and Folfox 2013/14. CEA less than 3.
Rev ileostomy 2014.
6 monthly CT's NED 3 monthly CEA's slow increase to 5's.
PET scan NED for bowel cancer. Early stage thyroid cancer.
Thyroidectomy 2015. CEA's still in 5's. NED on CT.
2017 small liver mass. CEA 35.Liver res'n + Folfox CEA less than 3.
November 2018 CEA 18. PET scan: +ve lymph node near liver. Node resection
2019 Jan CEA 9 PET NAD, April CEA 15 - PET NAD, July CEA 21 awaiting PET

plastikos
Posts: 351
Joined: Wed Jan 14, 2015 6:09 am

Re: Multiple reoccurrence survival stories

Postby plastikos » Tue Feb 05, 2019 8:41 am

I’ve had 2 since my initial diagnosis and surgery in 2014. I am NED now. Don’t lose hope.
St. IV Colon CA @ 37, male, Kras wild, MSI-high (2014)
11/2014 Right Hemicolectomy + Liver Resection
12/2014 - 6/2015 FOLFOX + Cetuximab
10/2015 - Recurrence liver
Liver resection 10/2015
FOLFIRI 11/2015 - 5/2016
Recurrence liver, nodes 11/2016
Pembrolizumab started 12/2016 -> pseudoprogression(?) -> biliary obstruction -> biliary stenting
Chemo 4x: most mets inactive and smaller on PET-CT
March 2017 - Back on Pembrolizumab again
Sept 2017 - SIRT - > NED
2019 NED

rp1954
Posts: 1853
Joined: Mon Jun 13, 2011 1:13 am

Re: Multiple reoccurrence survival stories

Postby rp1954 » Sun Feb 10, 2019 4:08 pm

Not exactly multiple recurrences, because we couldn't get rid of it all, no one anywhere expected us to get rid of all the micromets - "chemo forever". Our backstory. The imaged masses and the markers do change and we changed the supplemental chemistry, a la whack-a-mole. After 8 years immunochemo, my wife has been off chemo for over 7 months, she's pretty low on other chemistry too. This week she brought home her lowest CEA ever, 1.3, down from 1.8 several months ago. Her lowest, steady, previous baseline was 2.1 back in 2011 while on chemo.

Treat the markers, nicely, chemistry-wise. If you can see it, snip it, and if you can't, still treat the (extra) markers, augment the immune processes, and remove immune stresses. Since she came off chemo and a lot of the supplements, an old, crowned and root canaled tooth blew up with a big abscess, and was removed days before this last CEA. One more immune stressor gone.
watchful, active researcher and caregiver for stage IVb/c CC. surgeries 4/10 sigmoid etc & 5/11 para-aortic LN cluster; 8 yrs immuno-Chemo for mCRC; now no chemo
most of 2010 Life Extension recommendations and possibilities + more, some (much) higher, peaking ~2011-12, taper chemo to almost nothing mid 2018, IV C-->2021. Now supplements


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