For those following Steve's story UPDATE 10/20 :-0

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Bev G
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Location: Quechee, VT

For those following Steve's story UPDATE 10/20 :-0

Postby Bev G » Thu Sep 26, 2013 2:52 pm

From my Facebook (very exhausted, very, very beyond it, have to try to sleep, can't type now)

Hi kids,

I can't even put a funny spin on today. I had to get my port flushed and blood taken from it---it was plugged up with a blood clot at the end of the tube in my right atrium. They shot some "clot buster" in and eventually it cleared. Looked for a bit like I was going to have to have the port pulled, but it seems to be OK now.

Now, just about the worst news ever, I guess. Steve had PET/CT. In two months his cancer has spread everywhere: lungs, bone marrow, pelvis, throughout abdomen, up his paraceliac lymph chain, the lesion previously identified on his kidney has grown 4-5x bigger in 2 months, and the "avidity" has gone from ~3 to >10 (how malignant the tumors are, and an FDG >5 is usually very malignant) So, this is just a huge boatload of bad news. Quite a lot worse than we figured it would be.Unless there is a quick and marked improvement with the chemo, which will start next week, he will not be able to get a bone marrow transplant (which is his only possibility of a cure). Very sad and bad news indeed.


Love to you all,

Bev

PS Gwen, I hope you got/get good news from today. xox
Last edited by Bev G on Sun Oct 20, 2013 11:35 am, edited 6 times in total.
58 yo Type1 DM 48 years
12/09 Stage IV 2/22 nodes + liver met, colon resec
3 tx FOLFIRI, liver resec 4/10
9/10 6 mos off chemo, Neg PET&CTC CEA nl
2/11 finished total 10 rounds chemo

9/13 ^17th clean PET/CT NED for now

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Rob in PA
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Location: Pennsylvania

Re: For those following Steve's story

Postby Rob in PA » Thu Sep 26, 2013 3:04 pm

Bev, I don't even know how to respond....I'm so, so sorry to hear your news and continue to pray for you and Steve.

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

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CRguy
Posts: 10474
Joined: Sun Feb 10, 2008 6:00 pm

Re: For those following Steve's story

Postby CRguy » Thu Sep 26, 2013 3:10 pm

Sending prayers and strong positive energies your way Bev.
The sucknitude is major with this news but remember that you also need to take care of yourself in the caregiver role.

Harmony, my friend
CRguy
Caregiver x 4
Stage IV A rectal cancer/lung met
17 Year survivor
my life is an ongoing totally randomized UNcontrolled experiment with N=1 !
Review of my Journey so far

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Maia
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Joined: Fri Aug 24, 2012 8:00 am

Re: For those following Steve's story

Postby Maia » Thu Sep 26, 2013 3:33 pm

Sending strong thoughts your way, ((Bev and Steve))

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Voxx66
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Joined: Wed Jul 24, 2013 10:22 pm
Facebook Username: Michael Void Ward

Re: For those following Steve's story

Postby Voxx66 » Thu Sep 26, 2013 3:54 pm

keeping you both in my thoughts and prayers.
DX and resect 10/2012 age 46
Stage IIa CRC
liver mets both lobes 8/2013
CEA 28
FOLFOX + Avastin 8/26/13 3 rounds
Folfox only 3 rds + rd 8
platelets low round 7,9,10 5FU only
1/14 CEA 1.0 y90
5fu
10/14 mets lung and peri
1/15 Folfiri

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tchan8888
Posts: 208
Joined: Mon Mar 25, 2013 8:41 pm
Location: San Francisco Bay Area

Re: For those following Steve's story

Postby tchan8888 » Thu Sep 26, 2013 4:00 pm

Praying for super effective chemotherapy treatment. You are a pillar of strength!

Blessings,

Tom
Tom, 49 now
12/12 Right Hemicolectomy 2X (29 days in hospital)
12/12 Stage IV: multiple distant LN; no organs
20X: FOLFIRI (stopped working)
8X: 5FU
8X: FOLFOX and Avastin
2016: Clinical trial pembrozilumab MSI high

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Icesk8tr
Posts: 1068
Joined: Sat Apr 30, 2011 11:37 am

Re: For those following Steve's story

Postby Icesk8tr » Thu Sep 26, 2013 4:30 pm

Dear Bev,
I am so sad to hear this news. Hoping Steve has a good response to chemo.

Hugs,
Christine
Stage IV CC 2010

vickitwo
Posts: 696
Joined: Thu Apr 26, 2012 9:56 am
Location: USA

Re: For those following Steve's story

Postby vickitwo » Thu Sep 26, 2013 4:53 pm

Bev, This cancer thing sucks so bad. I am so sorry to hear this news. I am praying that the chemo works well for Steve. Please take care of yourself, you have so much on your plate right now. I was concerned when you said that you had not taken your antidepressants in four days. I know that would make me feel awful. I hope that you are back on track with that. Hope that you can get some good restful sleep . (((((HUGS))))))
Vicki

DH Dx 1/2012 @ age 52
stage IV CC
transverse colon,omentum, cecum,liver,lungs,L5
9 rounds of Folfox, Avastin,
5FU/Leucovorin/Avastin
radiation tx to L5 and hips
Folfiri/Zaltrap
12/13/13 Folfox/Avastin
1/4/2014 passed away @ Hospice House- age 54

tammylayne
Posts: 2177
Joined: Fri Jul 16, 2010 9:24 am

Re: For those following Steve's story

Postby tammylayne » Thu Sep 26, 2013 4:58 pm

Bev...I wish I had words to comfort you...fairy dust to help you sleep...but above all...the magic to take this all away...

So many gentle hugs to you...so, so many....take care of yourself my friend...
51 F
'06 Stage 1 CC,
'10 Stage 3 Rectal

"You never know how strong you are until you have to become your own hero."

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Rockovage
Posts: 128
Joined: Wed Apr 24, 2013 10:38 pm
Location: Cali

Re: For those following Steve's story

Postby Rockovage » Thu Sep 26, 2013 5:15 pm

Sorry for all the bad news , sending positive vibes your way

Mark
52 M
Colonscopy 2/13, DX stage 1 rectal cancer
open LAR 3/13 12in. colon / rectum removed
temp ileo
reversal 7 /13

Great day to be alive

bldblu_2
Posts: 113
Joined: Mon Jul 01, 2013 12:19 pm

Re: For those following Steve's story

Postby bldblu_2 » Thu Sep 26, 2013 5:20 pm

I hate reading stuff like this. Makes me think of the day when we hear things have progressed. :( Praying for you both and hope the chemo does the trick so the transplants can happen.
My husband dx 12/2/2011 Colon
Folfox 2/2012-8/2012
March 2013 ~~ it's back
Mets to liver & peritoneum
Folfiri & avastin 4/2013
November 2013 stable scan
4/29/14 last Folfiri/Avastin
5/15/14 scan, new liver mets
6/4/14 Vectibix irenotecan

kpjpmom
Posts: 197
Joined: Sat Nov 26, 2011 10:27 pm

Re: For those following Steve's story

Postby kpjpmom » Thu Sep 26, 2013 5:23 pm

Bev,
I am so sorry to hear this news. Praying for strength for you both. :cry:
DX March 2011 stg 3 cc
Kidney cancer May 2011
Folfox 6months (12 rnds)
It's Back! October 2012 colon resection, kidney removed.FOLFIRI/Erbitux starts Jan.2013
Completed FOLFIRI June 2013, Erbitux continues
March 2015 Met to spine. Radiation 15 treatments
Folfri, 5fu dropped after 3x, Erbitux and Iri continued CEA rising. Moved to
Folfox, Xeloda,Avastin until Feb. 2016 oxilap. Neuropathy returns.
Xeloda,Avastin continues.

skypup
Posts: 2598
Joined: Mon Dec 17, 2012 12:12 pm

Re: For those following Steve's story

Postby skypup » Thu Sep 26, 2013 6:12 pm

Ah, Bev, sweet sister... I am so sorry for Steve's news. I know the road ahead is such a hard one for both of you, together and individually. We'll all be looking forward to a good response to chemo. Get some sleep, angel.

Love you,
Skypuppy

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edinaman
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Joined: Wed Oct 26, 2005 10:15 pm
Location: Minnesota

Re: For those following Steve's story

Postby edinaman » Thu Sep 26, 2013 6:28 pm

Bev, I am so sorry about the news. I am thinking of you and Steve, and wishing you all the best.
Jeff
Went in for surgery for a cyst on my bladder, and they found colon cancer growing on the outside of the colon. Got to have two surgeries at the same time! Stage 3, one node involved.

gep
Posts: 418
Joined: Wed Aug 19, 2009 6:21 pm
Location: Chicago, IL

Re: For those following Steve's story

Postby gep » Thu Sep 26, 2013 6:41 pm

I, too, am thinking of you both.
Gloria
caregiver to Eli
dx 8/07 3B
7/09 - liver & celiac lym node
1/10 Liver Res & Lym nodes out
7/10 Back - Liver & other lym nodes
12/12 hit chemo wall
1/12 Clin Trial - MEK & AKT inhibitors
3/12 Trial failed/ spheres 4/12
7/30/13 Eli died.


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