No chemo today: UPDATE 3/2

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Kathleen808
Posts: 1761
Joined: Sun Feb 08, 2009 12:49 am
Location: Hawaii

Re: No chemo today :(....NEW INFO!!!!

Postby Kathleen808 » Tue Mar 01, 2011 2:50 pm

Elissa,
Prayers and aloha coming to you from Hawaii. I think everyone has given you good advice. Breathe and put one foot in front of the other. Many things can make CEA rise. Your vacation was a huge blessing to ALL of you. Those family times are precious.
I'm thinking of you.

Aloha,
Kathleen
Kathleen
DH 1/09 3c 51yr rsct
Folfx 3/09
1 l nd 9/09 Flfri Avstn
PET clr 6/10
Folfri Avstn 7/10
ND 10/10
1/11 lng mets Flfri Avastn
ND 2/12
9/12 Flfri Avastn
10/12 grwth lng mts Erbtx Avstn Irintcn
1/13 stabl
9/13 grwth
8/16/14 passed into eternal peace

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elissa
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Joined: Mon Sep 20, 2010 1:52 pm
Facebook Username: elissa fenster cazassus

Re: No chemo today :(....NEW INFO!!!!...Really bad news

Postby elissa » Tue Mar 01, 2011 5:52 pm

Really, really bad day! I called the onc this morning and he got back to me quickly. He suggested that we not play the wait and see game, and he scheduled my husband for for a CT scan of the abdomen this afternoon. He was thinking that it was probably some kind of infection, or possibly an absess from the fistula. Well, I just got off the phone with the onc, and believe it or not in the one extra week off the chemo he had cancer regrowth in all areas (lymph nodes, liver, colon). He had a freakin better chance of winning the lotto than having regrowth in one week. The onc said he has never seen this happen. The surgeon had originally warned me that his cancer was aggressive, but how the he** could it be this aggressive. This cannot bode well for the future. So, tomorrow we go back in and meet with the onc and make a new plan and get him back on chemo. I totally feel like I'm going to throw up. And I feel sick to my stomach that we went away on vacation....how unfair is that!!! I feel like I am at a total loss.
Wife of John, 52
Dx cc 9/3/10; Stage IV
14/25 LN; 2 liver mets
Lynch: MSH2; KRAS mutant
Colon resection 9/9
Various complications
12 rounds of FOLFOX/FOLFIRI
was called home on 4/30/11

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jgall
Posts: 814
Joined: Wed Jan 05, 2011 9:44 pm
Location: New York City

Re: No chemo today :(....NEW INFO!!!!...Really bad news

Postby jgall » Tue Mar 01, 2011 6:02 pm

Oh my dear Elissa - my heart aches for you. I'm going to go throw up in sympathy with you. I'm so very sorry to hear that. Let's keep a positive focus that they get him back on chemo asap and you start shrinking those nasty buggers.

Hugs...
Julia
DH Chris, 50, Dx Nov '10 Stg 4
cardiac arrest from 5-FU
Iri/Erbi, RFA, liver/colon resection, more Iri/Erbi
Oct14-Feb15 clinical trial
SIRT Apr15-unsuccessful
Stopped treatment May15
Hospice July15
Passed 8/15/15
http://www.caringbridge.org/visit/chrisandjulia

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Russian27
Posts: 490
Joined: Sun May 17, 2009 9:47 am

Re: No chemo today :(....NEW INFO!!!!...Really bad news

Postby Russian27 » Tue Mar 01, 2011 6:21 pm

Lots of prayers going your way Elissa
Dx at 39(12/2008), Stage IV, omentum mets,
0/16 lymph nodes positive,
right colectomy 1/2009,
FOLFOX + avastin 2/2009-7/2009
Thank You Colonclub! 2015

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juliej
Posts: 3098
Joined: Thu Aug 05, 2010 12:59 pm

Re: No chemo today :(....NEW INFO!!!!...Really bad news

Postby juliej » Tue Mar 01, 2011 6:51 pm

Oh, Elissa, you're so right about it being unfair, but don't beat yourself up about the vacation. No one - not even our oncs, radiologists, surgeons, etc. - quite know the "right" or "wrong" thing to do with cancer treatment. So much of it is up to things that no one can know.

elissa wrote:So, tomorrow we go back in and meet with the onc and make a new plan and get him back on chemo.

Concentrate on the fight, girl! I'll be sending you tons of prayers, light, and love.

Julie
Stage IVb, liver/lung mets 8/4/2010
Xelox+Avastin 8/18/10 to 10/21/2011
LAR, liver resec, HAI pump 11/2011
Adjuvant Irinotecan + FUDR
Double lung surgery + ileo reversal 2/2012
Adjuvant FUDR + Xeloda
VATS rt. lung 12/2012 - benign granuloma!
VATS left lung 11/2013
NED 11/22/13 to 12/18/2019, CEA<1

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Kathleen808
Posts: 1761
Joined: Sun Feb 08, 2009 12:49 am
Location: Hawaii

Re: No chemo today :(....NEW INFO!!!!...Really bad news

Postby Kathleen808 » Tue Mar 01, 2011 6:53 pm

Oh Elissa,
My hearts just hurts for you right now. I am sorry that the cancer is so aggressive right now. Praying that the chemo will beat the hell out of it. Please do not berate yourself or anyone for that lovely vacation. We really don't ever know what the cancer will do but we do know that time with family is very, very precious. I send my love and prayers to you and John and your kids.

Aloha,
Kathleen
Kathleen
DH 1/09 3c 51yr rsct
Folfx 3/09
1 l nd 9/09 Flfri Avstn
PET clr 6/10
Folfri Avstn 7/10
ND 10/10
1/11 lng mets Flfri Avastn
ND 2/12
9/12 Flfri Avastn
10/12 grwth lng mts Erbtx Avstn Irintcn
1/13 stabl
9/13 grwth
8/16/14 passed into eternal peace

dianne052506
Posts: 1651
Joined: Sun Nov 02, 2008 11:57 pm
Location: North Carolina

Re: No chemo today :(....NEW INFO!!!!...Really bad news

Postby dianne052506 » Tue Mar 01, 2011 7:22 pm

Elissa,

Prayers for you and your husband. I can't believe that the one week off chemo made that kind of difference. Your family needed that vacation. You'll use the strength you got from that to continue the fight ahead.
Wishing the very best for you both.
Dianne
May 06 Stage IV CC: liver,ovarian mets
Oct 07 inoperable lung mets
Feb 08 - Apr'12 chemo
allergic to oxaliplatin, irinotecan
Aug '12-Feb'14 Genentech PD-L1/Avastin trial
Mar '14 -radiation to largest lung nodule
still recovering; looking at trials again

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blakeswife
Posts: 540
Joined: Sun Jul 26, 2009 5:55 pm
Facebook Username: kathy.mair
Location: Utah

Re: No chemo today :(....NEW INFO!!!!...Really bad news

Postby blakeswife » Tue Mar 01, 2011 7:44 pm

Elissa,

I am so very sorry to read this! That IS awfully fast after only 1 week!

Here's some food for thought - maybe that particular chemo just wasn't working? You could have possibly gone this same route even if there wasn't a vacation. I agree with Dianne, you needed the vacation & will use the strength to fight the battle.

Again, I'm really sorry....

Kathy
DH Stage IV 10/07
Colectomy, Liver resection & RFA, 1/13 LN
12/07-5/08 Folfox/Avastin
7/09 recurrence-Peritoneum
9/09-12/09 Folfiri/Avastin
1/10-5/10 Xeloda/Avastin
9/10-current w/built in breaks

Mona
Posts: 910
Joined: Wed Jan 19, 2011 10:27 am
Facebook Username: maria kucharek
Location: NY

Re: No chemo today :(....NEW INFO!!!!...Really bad news

Postby Mona » Tue Mar 01, 2011 8:01 pm

Elissa,

Positive energy and lot of prayers going your way.

Mona
At age 46 DX 7/21/10 Stage 4 colon cancer with mets to the liver.
8/10 Folfox 6 tx
11/10 Colon/liver resection 1/29 nodes
12/10 Folfox 6 tx, NED
3/11 chemo done
11/11 recurance liver
12/11 liver resection/Hai pump
01/12-07/12 Fudor/Folfiri

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Terry
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Facebook Username: Terry Minor
Location: Silver Cliff, Wisconsin

Re: No chemo today :(....NEW INFO!!!!...Really bad news

Postby Terry » Tue Mar 01, 2011 8:17 pm

I'm so sorry Elissa, this isn't right. Please try and not beat yourself up about taking a vacation. Honestly, it most likely wasn't responding to the chemo and would have grown regardless. I didn't miss any infusions with ironetican and had growth anyway, it just happens.

I'm so sorry for your husband and you and your family. I know the sick feeling your having right now. Take it a minute, hour, day at a time.

We're here for you.
Terry
DX 7/3/07
Chemo, radiation, 20 mo. chemo, IMRT, cyberknife, 6/11 lobectomy.
1/16 resection perm. colostomy intraop. rad.
PET 2/12 nose, thyroid, liver, lngs
Folfox 3/12
Lord I know You'll keep me here until
you know I cannot suffer any longer!

xharryx

Re: No chemo today :(....NEW INFO!!!!...Really bad news

Postby xharryx » Tue Mar 01, 2011 8:20 pm

prayers coming your way that they come up with a good plan for him and less stress for you. believe in god

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LeeT
Posts: 178
Joined: Mon Jun 14, 2010 11:33 am
Location: Ontario

Re: No chemo today :(....NEW INFO!!!!...Really bad news

Postby LeeT » Tue Mar 01, 2011 8:25 pm

Oh Elissa, I can feel your pain and sense of anguish. My tumors seem to be of the aggressive nature too and together with my Onc we are trying to miss an appointment. When I did miss one I was in bed and on drugs for a good week with excrutiating liver pain. But then when I did have chemo the pain persisted..this is how they figured that FOLFIRI had run its course. I am glad that they discovered this sooner than later- no use continuing a treatment that is not working anymore.
Please don't regret a holiday...I would gladly miss a chemo for a week away even if it sent me to bed for the next week. I am sure your onc will come up with Plan B and will get the cancer under control.
Virtual hugs and thoughts to you and your hubby
LeeT
Age31
Proud mamma of Rhys and wifey to Grant
Dx 29 April Stage IV mCRC cancer with mets on liver
18/05- Started FOLFIRI with Avastin

Seriously, WTF?
Posts: 602
Joined: Wed Nov 17, 2010 10:48 pm

Re: No chemo today :(....NEW INFO!!!!...Really bad news

Postby Seriously, WTF? » Tue Mar 01, 2011 8:29 pm

You know me with PUKESVILLE!!! OMG!! WTF!!! I am at a loss for words...honestly it just plain sucks. The best thing you did was go on that vacation. Timing wise I don't think it was the missed chemo. The doctor told you to go and enjoy yourself..and I hope you did with many memories. 2mro is a new day , as baffled as the doctors may be, their goal will be to try to help John fight this. I just said a prayer for you and your family, and I am sending you so many hugs and prayers from NJ. hang in there pal! xoxo
ALWAYS IN MY HEART!
5/7/2013

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Jayna
Posts: 333
Joined: Tue Oct 05, 2010 8:32 am
Facebook Username: jayna.mason
Location: Gainesville, FL
Contact:

Re: No chemo today :(....NEW INFO!!!!...Really bad news

Postby Jayna » Tue Mar 01, 2011 9:21 pm

Elissa,
My heart aches for you and John. I am so sorry that the onc did not give you good news. Take the time to let it sink in- then get ready to plan a new course. You and John had a wonderful vacation that gave you a chance to step out of your everyday lives and enjoy yourselves. I am sure you made some great memories.
Nothing you did or did not do could have made this any different. The thing to concentrate on now is 'how and what is the next plan to help John'. Please know I will be keeping you in my prayers and am sending many many positive thoughts your way.
As you already know - we are here for you at any time and any moment.
Jayna
Jayna
48, married with grown children
Aug '10 colonoscopy- 2.3 cm tmr in sig. colon
Sept '10 lap. sig. colect.- stage IIIa T2,N1,M0
Nov '10 FOLFOX 6:12 rds/6mo (FINISHED 4 /11 9tx: oxi 12tx: 5FU/leco.)
Feb '11 clear scans-NED'ville!

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elissa
Posts: 591
Joined: Mon Sep 20, 2010 1:52 pm
Facebook Username: elissa fenster cazassus

Re: No chemo today :(....NEW INFO!!!!...Really bad news

Postby elissa » Tue Mar 01, 2011 9:34 pm

Thank you, thank you so much all of you for the love and support. I truly feel it and I really needed it. This is why this group is so incredibly important to me, and right now I feel like I could not live without it. I am trying to mentally regroup for tomorrow so that we can get back to kicking some cancer a**. I think hubby might even be doing a better job than I am....he's with my older son at basketball practice tonight. He is the coach.
A few of you had mentioned that the chemo probably was not working, but the strange thing is that it absolutely was. He actually had his most recent CT scan just a week before we left for vacation and it showed significant shrinkage in everything. I can't imagine that his cancer is so aggressive that it would grow in a week, but it did.
Ok, on to bigger and better things!
THanks again.
XOXO,
Elissa
Wife of John, 52
Dx cc 9/3/10; Stage IV
14/25 LN; 2 liver mets
Lynch: MSH2; KRAS mutant
Colon resection 9/9
Various complications
12 rounds of FOLFOX/FOLFIRI
was called home on 4/30/11


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