long term survival stories

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janderson
Posts: 679
Joined: Tue Mar 27, 2012 11:46 am

long term survival stories

Postby janderson » Thu Mar 06, 2014 8:06 am

How long have some of you who are stage IV been surviving primarily on chemo along with maybe an occasional RFA or SBRT thrown in but no surgeries for metastatic disease.
DX 10-05 stage IV
liver resection 12-05 Folfox1-05 to 7-06
Liver resection 8-07 Folfiri 9-07 to 3-08
Liver resection 12-11
Recurrence 2/7/2014, liver, chestwall mets, 16 rounds chemo
7/3/14, y90 radioembolization, steady shrinkage
12/8/14, cryoablation to liver and chest wall
6/1 to 6/26 SBRT radio surgery
7/2 more cryo ablation to right lung
7/16 lung infection drain tube installed
9/4 chest wall resection to remove 2 ribs

gfpiv
Posts: 156
Joined: Tue May 25, 2010 9:24 pm

Re: long term survival stories

Postby gfpiv » Thu Mar 06, 2014 12:20 pm

Not sure that I qualify as 'long-term' survival...but certainly longer than all my oncs expected at dx. I hesitate to share my story at times due to a bit of survivors' guilt, but I'm over 4 years since Stage IV dx, innumerable liver mets, and have never had liver resection. And I've been blessed to have been off all chemo for over 1.5 yrs now, in no small part due to this hockey puck souvenir I carry with me at all times (aka Hepatic Pump). Continued best wishes to all here for excellent results!
-Chip
Chip
DX stage IV CC Jan '10, numerous unresectable liver mets
FOLFOX + Avastin Feb-Jul '10
Colon resection, HAI install Aug '10
Systemic FOLFIRI and hepatic FUDR Dec'10-May'12
Chemo break May'12-pres (tumors calcified & stable, knock on wood)
Billiary bypass surgery and SBRT on pesky liver met in 2015

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betsydoglover
Posts: 939
Joined: Mon Aug 14, 2006 2:31 pm
Facebook Username: Betsy Lindh Williams
Location: Maryland - outside DC

Re: long term survival stories

Postby betsydoglover » Thu Mar 06, 2014 1:21 pm

I don't meet all your qualifications (have had surgery), but I'll be 9 years since diagnosis in the end of May and 5 years (NED again) next month. See my signature. Liver met resolved with chemo; lung recurrence; lung met resolved with surgery plus some follow-up chemo.

I hope this helps. I feel sort of guilty and so I don't often post here.

Take care,
Betsy
diag. Stage IV, 5/05, liver met
lap sigmoid colectomy, 6/05
6 cycles Xeloda/oxaliplatin/Avastin (NED after 2)
11/08 9x13mm right lower lobe lung nodule; removed via VATS 4/09
NED
6 cycles Xeloda + Avastin
Avastin only 10/09-5/11
Still NED 06/18

mjkelley
Posts: 131
Joined: Fri Jul 16, 2010 10:24 am
Location: Greater Sacramento area

Re: long term survival stories

Postby mjkelley » Thu Mar 06, 2014 3:28 pm

Chemo only for 4 years!
DX 1/30/10 @ 49
stage iv with In-numerable mets to Liver
Treatment plan: Chemo for life
40 rounds folfox Feb 2010 to October 2011
Dropped oxi October 2011
REDUCTION OR NO NEW GROWTH
July 2013 Growth
Back on oxi July 2013
More Growth
Folfori October 2013

Cb75
Posts: 1216
Joined: Sun Apr 22, 2012 3:52 pm
Location: Ontario, Canada

Re: long term survival stories

Postby Cb75 » Thu Mar 06, 2014 4:01 pm

Please don't feel guilty for positing if you are a long term survivor of any stage. It gives others hope and you should feel blessed that you have had long term remission. I understand survivors guilt, but like any of us guilt should have no place in our thoughts or feelings when dealing with this disease.

cb
39y female Stage IV
diagnosed April 2012
sigmoid resect May 2012
liver resect Aug 2012
Folfox Oct 2012
lungs Sep 2013
R and L laser lung resection Nov 2013/Feb 2014
FOLFIRI and Avastin Apr 2014 ongoing...

Mattie
Posts: 58
Joined: Fri Mar 07, 2014 1:06 am

Re: long term survival stories

Postby Mattie » Fri Mar 07, 2014 1:28 am

I'm another one with survivors guilt. Stage IV 4 years since diagnosis. No new progression beyond what was found at diagnosis.
4/10 debulk, DX stage IVb, 49yo
5/10-11/11 Folfox, then Xeloda/Avastin
4/13 Resect liver met + pelvic node
7/14 SBRT 15 mm Liver & node
12/14 SBRT 8 mm Liver met
3/16 4-5 pelvic nodes, Xeloda/Avastin again
12/16 NED, sticking with Xeloda/Avastin
8/17 still NED Dropping xeloda. Avastin only.
10/18 still NED sticking with Avastin only

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Cherie
Posts: 590
Joined: Fri Jul 12, 2013 11:20 am
Facebook Username: cherie
Location: New Zealand

Re: long term survival stories

Postby Cherie » Fri Mar 07, 2014 2:30 am

Wow those are some awesome stories. I hope none of you waste a minute on guilt. We are all happy that we have you as our hope. We all need stories like this for our own survival.
36Yo F
2000 UC
2013 Stage 4 CC 15/126 LN spread to the omentum
June Collectomy all visible cancer removed
July Folfox + Avastin
2/14 clean scan
8/14 Ileo-anal pouch surgery still NED
1/15 Emergency illeostomy spread to peritoneum and small bowel

janderson
Posts: 679
Joined: Tue Mar 27, 2012 11:46 am

Re: long term survival stories

Postby janderson » Fri Mar 07, 2014 8:24 am

Thanks for all of the stories. BTW survivors guilt is real but nonsense. I am nearly 8 1/2 years now and used to feel guilty but see how my story inspires others as I look for stories to inspire me. We all need a little help. I started this post because I have always been operable followed by mop up chemo. This time (3rd recurrence) is a different story. chemo, maybe some radiation, RFA and then see what happens so I might be at the point of managing my disease through methods other than surgery and really have to rely on the hope that I respond well to chemo. That is why I am looking for long term success stories without the benefit of surgery but with all other means through diseas management.
DX 10-05 stage IV
liver resection 12-05 Folfox1-05 to 7-06
Liver resection 8-07 Folfiri 9-07 to 3-08
Liver resection 12-11
Recurrence 2/7/2014, liver, chestwall mets, 16 rounds chemo
7/3/14, y90 radioembolization, steady shrinkage
12/8/14, cryoablation to liver and chest wall
6/1 to 6/26 SBRT radio surgery
7/2 more cryo ablation to right lung
7/16 lung infection drain tube installed
9/4 chest wall resection to remove 2 ribs

mymom
Posts: 1258
Joined: Fri Aug 12, 2011 11:07 pm
Location: Connecticut

Re: long term survival stories

Postby mymom » Fri Mar 07, 2014 2:44 pm

Agreed. I want to hear positive stories. I think there are more long term survivors with stage 4 but they either do not post because of survivors guilt or they go and live their lives and kind of put the board behind them. Stories give us hope. My mom will be 3 years in May.
Stage 4 CC DX 5/11
colon/livr rsct 5/11(1 met)
Folfox July-11/11
NED to 5/12
New Primry BC-4/12,Stage 1
2 livermet 5/2012
Liver rsct,HAI 6/12,Folfiri
NED to 10/13,1 liver met,ablation, Folfiri
NED to 12/14, another spot
3/15 NED
Ablation 1 liver met 10/15
1/16 NED

KWT
Posts: 3214
Joined: Thu Jul 11, 2013 7:22 pm

Re: long term survival stories

Postby KWT » Fri Mar 07, 2014 2:52 pm

I would think that positive stories are what most people come here looking for.

AngelaN
Posts: 206
Joined: Tue Jan 28, 2014 9:00 pm
Facebook Username: angelamnicholas

Re: long term survival stories

Postby AngelaN » Fri Mar 07, 2014 6:41 pm

I'll second and third what everyone else said....please don't have survivors guilt!!! Those of us supporting those with CRC love to be able to tell them "I just read about...." It gives us all a light at the end of the tunnel!
DH diagnosed with Stage 4 CRC Nov 2013
11 tx Folfox/Avastin; LAR/liver resection/introp RF of liver - May 2014
3 treatments FOLFIRI
Lung resection - Sept 2014
FOLFIRI + Avastin x 10 treatments
Avastin+5FU q3 weeks x 4
SBRT x 1 lung met
RFA for remaining 3 in Oct and Nov
SBRT for liver met Jan 16
lung mets growing
Enrolled in NIH TIL trial Oct 16
XRT for lung met 12/16
Cells didnt grow for TIL trial Feb 17
Waiting for NCT03085914 at Penn

pog451
Posts: 799
Joined: Thu Oct 13, 2011 6:11 am
Facebook Username: andrew.morgan

Re: long term survival stories

Postby pog451 » Mon Mar 10, 2014 8:23 am

Fourthed - I just logged in, having read the first few mails, but I see the last couple say what I wanted to say: As a newbie I wanted to see success stories. To heck with survivors guilt - Tell us how you are doing!

If you never see posts from StIV's, You always wonder if their journey has ended or continues away from the forum., Obviously, a large number people with StIV DONT make it, all the more valuable to hear from those that do.

Don't be strangers!
09.11 Dx @ 46, uT3uN1M0 G2
11.11 radio+Xeloda
01.12 LAR
03.12 Xeloda
09.12 Liver mets, 2 LN
09.12 Folfox+Avastin
02.13 Resection
04.13 Folfox & Avastin
11.13 Local recurrence
02-07.14 FOLFIRINOX
08.14 Re-rediation
Left us 28.05.2015

LKGower
Posts: 275
Joined: Fri Jan 11, 2013 4:23 pm
Location: Sydney, Australia

Re: long term survival stories

Postby LKGower » Mon Mar 10, 2014 8:46 am

Yes, please post!

I love hear survival stories..it gives us hope.
Dx 10/12 @ age 28 Stg. IV CRC spread to both ovaries, bladder and liver
Surgery 11/12 - 8/16 LN positive
9/13 Liver resection & RFA - 1/1 LN positive
10/13 boo its back already! Back to chemo

nkoske
Posts: 442
Joined: Fri Feb 22, 2013 2:00 pm
Location: California

Re: long term survival stories

Postby nkoske » Mon Mar 10, 2014 10:59 am

Cb75 wrote:Please don't feel guilty for positing if you are a long term survivor of any stage. It gives others hope and you should feel blessed that you have had long term remission. I understand survivors guilt, but like any of us guilt should have no place in our thoughts or feelings when dealing with this disease.

cb


This times 1000. Shout it from the roof tops.
Nick, DX @ age 34, IIIB Rectal Cancer 10/2012
ChemoRad IMRT 11/2012
Laparoscopic LAR 1/2013 (No Ileo)
Post Surgery Path IIIB (2/15 LN)
Chemo 2/2013 (XelOx)
Currently NED, Graduated from Med Onc 10/2017

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WorriedWife
Posts: 1125
Joined: Tue Jul 24, 2012 5:41 pm

Re: long term survival stories

Postby WorriedWife » Tue Mar 11, 2014 11:41 pm

I totally agree. Survivor stories, happy outcomes, NED for a long, long time is my VERY favorite thing to read in the whole wide world.

Bring them on!!!!!
Hubby
CC Stg. 2b
Dx 6/12
surgery & reconnect
opted out Folfox
Pet Scan Aug NED
abscess/fistula for over a year
ongoing Dec 2013
Praying for each and every one of you


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