Well, things could have went better

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drebay
Posts: 220
Joined: Thu Mar 20, 2014 5:39 pm
Location: Oregon

Well, things could have went better

Postby drebay » Tue Aug 11, 2015 5:46 pm

Received scan and blood results. Numbers are up again and there are more tumors. Dr. is trying to get me into a clinical trial. If not, there is nothing else they can do. 6-12 months.
6/13 Age 45 mom of 11 and 13 yr old DX Stage IV liver mets
7/13 colon surgery
9/13 Folfox
11/13 Xeliri
3/14 more liver mets
4/14 Lung Met
4/14 Liver resect delayed;lung resect done
5/14 Surg not an option
9/14 Stivarga
3/15 Back to IV Chemo
6/15 Avastin
9/15 In Clinical Trial

canadiandaughter
Posts: 676
Joined: Sun Aug 17, 2014 11:19 am

Re: Well. things could have went better

Postby canadiandaughter » Tue Aug 11, 2015 5:48 pm

So sorry to hear this. Will swing chickens for you that they find you a clinical trial!!
DD to 81 year old father
dx 24/07/14 iv cc mets liver/lung
folifiri started 19/07/14
shrinkage of all mets
growth in the liver,started folfox/avastin 80% 13/01/16
reduced to 70% due to side effects 27/01/16
First scan on folfox shows shrinkage in lungs, but liver just stable
6 rounds of vectibix-fail. 3cm growth and new spots showing Waiting for panel recommendations
At peace January 8, 2017

Tanya
Posts: 116
Joined: Fri Jul 03, 2015 10:34 am
Location: Kings park NY

Re: Well, things could have went better

Postby Tanya » Tue Aug 11, 2015 5:54 pm

So sorry :(
Dx-32y.o. Anal cancer-stage 3.
Aug-Sep xeloda & radiation-30
November 12-MRI-bones clear
November 30-NED
Moms of two (3 & 12 y.o.)
Recurrence -01.19.2016
Colostomy and APR surgery - 01.27.2016
Possibly chemo - June

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DBF
Posts: 328
Joined: Fri Jun 07, 2013 1:44 pm
Facebook Username: https://www.facebook.com/#!/profile.php?id=1000008
Location: New York

Re: Well, things could have went better

Postby DBF » Tue Aug 11, 2015 6:24 pm

I'm so sorry to read this. I hope you and your doctor find a trial that is a good match for you.
6/13 Dx @ 29 Wks pregnant, 42 yo
Adenocarcinoma, mucinous
7/13 C-sec/col resec/part. hysterectomy
8/13 Pulm embolism
8/13 Spread to liver
9/13 Liver resection
FOLFOX
CEA UP
ADAPT: Xeloda/Celebrex
2/14 oopherectomy
10/15 obstruction surg
10/17 Scar tissue removal/vsg surg
2019: NED :)
2021: NED :D
2022: NED :)
Mom to 3 boys: 24, 13 & 9

jhocno197
Posts: 817
Joined: Mon May 11, 2015 9:33 pm

Re: Well, things could have went better

Postby jhocno197 » Tue Aug 11, 2015 7:44 pm

I'm so sorry.
DH - dx Dec 2014, stage IV with bladder & peritoneal involvement - non-resectable
Colostomy
FOLFOX failed
FOLFIRI failed
Tumor actually distending pelvic skin
Not a candidate for last-ditch pelvic exenteration
Stivarga finally begun 2/19/16
Tumor growing/fungating
Lonsurf started 11/18/16
Died 3/10/17

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ziggymonster
Posts: 538
Joined: Tue Feb 05, 2013 3:23 pm
Location: California

Re: Well, things could have went better

Postby ziggymonster » Tue Aug 11, 2015 7:53 pm

I am very sorry to hear this..I hope that you can find a trial.
DX advanced prostate cancer 2002
2014 still fighting mPca , failed surgery, radiation, hormone
DX Stage IIIa Rectal Cancer 12/12 1 of 12 nodes +
LAR permanent colostomy 1/13
Folfox 2/13 - 7/13 clear CT CEA 1.2
7/14 liver met chemo the resect in Oct
6/15 2 pos lung mets watching for now

lpas
Posts: 1010
Joined: Wed Nov 19, 2014 11:11 pm

Re: Well, things could have went better

Postby lpas » Tue Aug 11, 2015 8:04 pm

Debbie,

I'm so sorry the news isn't better. Have you thought at all about trying IV Vitamin C? If I were in your shoes I think that's what I would do. Cherie seems to be having some really good luck with it. See here:

http://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=51789&p=403828#p403828

Best of luck with whatever you decide.
Last edited by lpas on Fri Sep 18, 2015 8:50 am, edited 1 time in total.
11/14 Dx sigmoid CC @ 45yo
12/14 Colectomy + hysterectomy
Stage IIIB, T3N1bM0, 2/20 nodes, MSS, G2, KRAS(A146T), TP53, SMAD4, ERBB2, CEA 1.0
2/15-7/15 XELOX & celecoxib
2/19 clean scope
11/19 clean CT
Ongoing cimetidine & other targeted supplements
Mom to a 6 & 8yo

cathy123
Posts: 665
Joined: Sat Nov 08, 2014 3:36 pm

Re: Well, things could have went better

Postby cathy123 » Tue Aug 11, 2015 10:07 pm

So very sorry. I hope you find a trial that is a good fit.
Cathy

Diagnosed 10/14 low rectal cancer age 43
Clinical T2NXMX
Radiation/xeloda 12/14-1/15
LAR with temp Ileo 3/15
pT2N0M0, lymphatic invasion 0/37 nodes
4 xelox, 1 xeloda only
Reversal 9/15
Mom to 9&11 year olds

Nik Colon

Re: Well, things could have went better

Postby Nik Colon » Wed Aug 12, 2015 4:44 am

So sorry :( Best wishes and (((hugs)))

drebay
Posts: 220
Joined: Thu Mar 20, 2014 5:39 pm
Location: Oregon

Re: Well, things could have went better

Postby drebay » Wed Aug 12, 2015 3:26 pm

lpas wrote:Debbie,

I'm so sorry the news isn't better. Have you thought at all about trying IV Vitamin C? If I were in your shoes I think that's what I would do. Cherie seems to be having some really good luck with it. See here:

http://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=51789&p=403828#p403828

Best of luck with whatever you decide.

Julie



Julie,


I will look into that, thanks so much.
6/13 Age 45 mom of 11 and 13 yr old DX Stage IV liver mets
7/13 colon surgery
9/13 Folfox
11/13 Xeliri
3/14 more liver mets
4/14 Lung Met
4/14 Liver resect delayed;lung resect done
5/14 Surg not an option
9/14 Stivarga
3/15 Back to IV Chemo
6/15 Avastin
9/15 In Clinical Trial

DarknessEmbraced
Posts: 3817
Joined: Sat Nov 01, 2014 4:54 pm
Facebook Username: Riann Fletcher
Location: New Brunswick, Canada

Re: Well, things could have went better

Postby DarknessEmbraced » Wed Aug 12, 2015 4:15 pm

I'm so sorry. I hope that you can find a clinical trial. *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! :)

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Rob in PA
Posts: 2022
Joined: Wed Dec 09, 2009 9:16 pm
Location: Pennsylvania

Re: Well, things could have went better

Postby Rob in PA » Wed Aug 12, 2015 4:23 pm

So sorry for the news, I've participated in two clinical trials and am a believer in them as far as extending life and adding hope for others in the fight. Hope you find a trial that suits you.

Best,
Rob
dx 11/07 crc IIIb @ 39
Xelox/Rad/ temp colostomy
LAR/J-pouch/ temp ileo
Folfox-8
Failed reversal
2/09 liver mets; liver resect/ileo reversal
Folfiri/Avastin - 12
2/11 5 lung mets
Folfiri/Avastin 2011
SBRT 3/12
Lung met 5/13/ said NO to more chemo
SBRT 8/13
2 lung mets 5/14, VATS 8/14, NED

rp1954
Posts: 1857
Joined: Mon Jun 13, 2011 1:13 am

Re: Well, things could have went better

Postby rp1954 » Thu Aug 13, 2015 6:50 pm

If they can't do anything more for you, you might do what some have done, a heuristic self trial of n=1. Take several (or many) of the biomarkers and try to slow or drive them down with light oral chemo, some/several of the off label adjuvants, supplements, and IV vitamin C. It's really discrimination on insurance reimbursement that holds people back. Apparently stuff 'em with expensive opoids and hellish new molecular entities that might buy a miserable month or two, or maybe the reverse, for $xxx,xxx fits various 3rd parties' care & financial models better.

I've seen more months (or years) and much better, more ambulatory QoL the low tech way. Also some companies and states may have better reimbursement policies for integrative medicine. I will tell you point blank, a determined opposition can get more done from their kitchen than multimillion dollar efforts run by politics.
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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