scared--failed trial, cea soaring, CAT scan today

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scared--failed trial, cea soaring, CAT scan today

Postby keepcalmcarryon » Fri Aug 12, 2011 8:48 am

Hindsight is terrible. I wish I hadn't entered the trial. I think it was just 4 months of letting my cancer grow unchecked. Before my proton therapy my cea was 120, then it went down to 75 and now it's 136!
So CAT scan today. I'm so afraid of what it will find. Is it back in the pelvis? I think so because of my sudden incontinence. Or did the lung things 'explode'? Or did it grow into the bone?
Or, or, I sound like a seal
Anyway, I'd appreciate good luck wishes. And good luck to all of you.
9/07 t3 n2
exc. biop, Xelox, Rad
06/08 NED
03/09 PET-pelvic LN
06/09 rad tx
10/09 exp.lap; can't find LN
05/10 Stage IV, lung nodes
04/10 Xeliri, Avastin
06/10 PET-lung ok
11/ 10 failed surg ln
02/11 Proton tx
7/11 failed clin. Trial
10/11- xelox

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Re: scared--failed trial, cea soaring, CAT scan today

Postby jmarie » Fri Aug 12, 2011 8:56 am

I am so sorry, I have been there and no that feeling of dread. I pray that there wasn't any major progression and that you are able to get it under control quickly. Good luck and some swing chickens for good measure :wink: , let us know how it goes.
DX Stage IV 11/25/08
mets liver lung, kras mutant
Baby 2yrs old! I am 32yrs
Too many chemo txs to count
trying to find a clinical trial
"You can't stop the waves, but you can learn to surf"

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Re: scared--failed trial, cea soaring, CAT scan today

Postby Bev G » Fri Aug 12, 2011 10:10 am

Hi Keepcalm:

I am really sorry you are going through this. Thank you for giving the trial a shot. I know you must be mortified by the possibility of progression while you were on the trial. I'm not at the point of clinical trials yet, but I'm sure when that time comes I will hang a lot of hope on a trial and would be hard pressed to take the possibility of it not helping. Try to "keep calm and carry on" (love that, and you) while you are waiting for results of you scan. I'll say and prayer and throw some chickens your way.

Love, Bev
Last edited by Bev G on Fri Aug 12, 2011 2:44 pm, edited 1 time 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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Re: scared--failed trial, cea soaring, CAT scan today

Postby Lee » Fri Aug 12, 2011 10:15 am

Good luck, this is a very stressful time for you, I've been there and I hate it. I hope you get good news.

While I'm not up on proton therapy, my CEA numbers went up when I was on chemo. I was told this could happen. My CEA numbers went down following chemo but it did take about 6 months following chemo. I hope it is that way for you also.

You will be in my thoughts and prayers for good news.

rectal cancer - April 2004
46 yrs old at diagnoses
stage III C - 6/13 lymph positive
radiation - 6 weeks
surgery - August 2004/hernia repair 2014
permanent colostomy
chemo - FOLFOX
NED - 10 years and counting!

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Re: scared--failed trial, cea soaring, CAT scan today

Postby beth568 » Fri Aug 12, 2011 11:03 am

I hope your scan results give you some answers, good news, and peace of mind. On behalf of everyone who might benefit from a clinical trial, thank you for being part of research that can help all of us (and has helped you, too, I hope). The CEA numbers may well be skewed because of the chemo - I hope that's all it is.

Please keep us updated. Strong thoughts coming your way.
dx @age 42, Jan '11 RC, T2or3NxM0 (stage IIIA/IIIB)
6 wks chemorad Feb - Mar '11
LAR 5/23/11, staged T2N1bM0 (2 of 15 nodes positive)
8 rounds FOLFOX, June-Oct. 2011
clear scans Nov '11, May '12, Nov '12, May '13

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Re: scared--failed trial, cea soaring, CAT scan today

Postby hopeful » Fri Aug 12, 2011 11:14 am

Sending prayers and positive thoughts that the CT scan shows good news. Apparently lots of things can affect CEA so hoping that things look better.
Caregiver to husband diagnosed 11/09 stage IIIb colon cancer
Surgery 11/5/09
12 rounds FOLFOX beginning 12/18/09
Folfox finished 6/3/10
Last scan Jan 2015
NED since Dec. 2009

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Re: scared--failed trial, cea soaring, CAT scan today

Postby CRguy » Fri Aug 12, 2011 11:48 am

Sending positron +++ vibes good wishes and chickens swinging...
for good scannin'

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

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Re: scared--failed trial, cea soaring, CAT scan today

Postby Terry » Fri Aug 12, 2011 11:52 am

Oh I know so much how you feel about hindset and regrets, I'm SOOOO sorry your going through this!

Your in my prayers.
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!

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Re: scared--failed trial, cea soaring, CAT scan today

Postby blakeswife » Fri Aug 12, 2011 1:10 pm

Hang in there! Sending positive thoughts & well wishes from Utah!
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

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Re: scared--failed trial, cea soaring, CAT scan today

Postby Marilina24 » Fri Aug 12, 2011 1:11 pm

Sorry your clinical trial did not help. My husband has started a clinical trial and will have his first CT scan on Aug. 26 and we will know if it helped. If there is no sign of stability or shrinkage, he will be taken out immediately. I wanted to know if you had a CT scan before 4 months and if so, did the trial work first and then after the first scan the drug lost its effect. If that is the case, what a bummer. Filled with highs and lows.

My husbands trial combines Iranitican and the trial drug. What trial were you on?

Husband Steve: Colos, resection, rev. 04
RFA liver 05,07, 09
Prostatectomy 05
VAT 2's, SIRT 2009
Ongoing chemo 04-10; clinical trial ends--disease progression; began trial Fox Chase 7/19/11.
Died Dec. 2, 2011, following 7 1/2 year battle

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Re: scared--failed trial, cea soaring, CAT scan today

Postby SkiFletch » Fri Aug 12, 2011 1:28 pm

Hoping, praying, and swinging chickens for good news
11/13/09 5cm Stage IV 9/25 lymph nodes w/2cm peritoneal met at 29 YoA
12/15/09 LA right hemi-colectomy
6/16/10 Folfox FINISHED
8/10/10 Prophylactic HIPEC
10/9/10 got Married :D
Still NED and living life to the fullest

"Can any one of you by worrying add a single hour to your life."

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Re: scared--failed trial, cea soaring, CAT scan today

Postby tammylayne » Fri Aug 12, 2011 6:41 pm

Sending you lots and lots of positive energies for a clean scan.

And as all the others have said....thank you for taking part in the trial. It is because of warriors like you that there is hope in the battle.

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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Re: scared--failed trial, cea soaring, CAT scan today

Postby CheeseHead » Sat Aug 13, 2011 4:04 am


Hope your scan went well and that you will get good results.

Also: thank you for taking part in the trial!

Hang in there,
    10 Stg 4 colon srgry
    12 Xelox/Avast
    05 Liver srgry
    -12 Xelox
    05 Xelox
    08 Iri/Vect
    11 Liver srgry
    01-05 Iri,Vect,Xeloda
    09 CyberKnife
    03-07 Ph I trial
    08-11 Regorafenib

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Re: scared--failed trial, cea soaring, CAT scan today

Postby KarMel » Sat Aug 13, 2011 6:43 am

Hindsight is 20-20....lots of things I wished I'd done different, but no use worrying about it now.
Now I take the info I have, and move on. It's all I can do.
I did a trial , too. It didn't help and I think I have some permanent lung damage from it. At the time, the infomation I had, I thought it was a very reasonable, good plan, that would possibly lead me to a better chance of cure.

But, for now, you just keep going as long as you can or want to. Know that many prayers have been said, many chickens have been swung, and you are in our thoughts. Let us know how your CT went.

Stage IV, April 2009.
Treatments...multiple .
Currently none
"It is well, with my soul"

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