FOR ALL ON CLINICAL TRIALS (edited name)

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dianne052506
Posts: 1651
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Location: North Carolina

Re: FOR ALL ON CLINICAL TRIALS (edited name)

Postby dianne052506 » Fri Jul 12, 2013 8:06 am

Gloria,
I have thought so much about you and Eli. It doesn't seem fair that things have worked out this way.

If Genentech comes to believe that the old tumor material is not good enough, I hope they will start allowing people on these trials without pre-testing. I'm sure a lot of patients are in the same position that I am in, with tumors and nodes that are too hard or too unsafe to biopsy.
Please know that you are in everyone's thoughts and prayers.
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

wireles99
Posts: 23
Joined: Fri Feb 22, 2013 4:39 pm
Location: Dallas TX

Re: FOR ALL ON CLINICAL TRIALS (edited name)

Postby wireles99 » Fri Jul 26, 2013 10:02 pm

Update on my clinical trial ...

http://clinicaltrials.gov/ct2/show/NCT0 ... 000&rank=1

I did get accepted on this trial ... hope it helps ... doing it at UT Southwestern ... starting it on this next week on Tuesday, and it will be every other week ...

So wish me luck ...
DX 09/04 Stage II rectal/Stage I colon
Chemo & Radiation 2005
NED till 2009
recurrence Stage IV colon cancer
FOLFOX & Avastin 2009, and 11/12-01/13
FOLFIRI & Avastin 2010-2012
Erbitux 2012
Several lung mets
04/13 to present on clinical trials

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

Re: FOR ALL ON CLINICAL TRIALS (edited name)

Postby skypup » Sat Jul 27, 2013 10:02 pm

I am indeed wishing you luck -- all the best luck!!!!

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

Re: FOR ALL ON CLINICAL TRIALS (edited name)

Postby skypup » Sat Jul 27, 2013 10:04 pm

Dianne, are you still stable on your trial drug?

I'm not sure yet, but I think mine is failing. I guess I've had a good run, but it may be time to move on soon. Am collecting info through August and will decide then...

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

Re: FOR ALL ON CLINICAL TRIALS (edited name)

Postby dianne052506 » Sun Jul 28, 2013 10:42 am

Skypup,

My last scan was in May, before round 13 of the 16-round trial. Things were still stable then. I have my first follow-up scan on August 1. I have an appointment for bloodwork later that day, but I don't know if I'll get the scan results then or if I have to wait until my next appt on August 8th.
Whenever I do see Dr. P., I'll ask again about the enrollment status for trials with this drug. Things seem to change on a regular basis, perhaps as they are getting more information back on each patient's results.
dge
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

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

Re: FOR ALL ON CLINICAL TRIALS (edited name)

Postby skypup » Sun Jul 28, 2013 11:17 am

dianne052506 wrote:Whenever I do see Dr. P., I'll ask again about the enrollment status for trials with this drug. Things seem to change on a regular basis, perhaps as they are getting more information back on each patient's results.

Thanks, Dianne, I'll be looking for a PD-1 or PD-L1 trial!

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

Re: FOR ALL ON CLINICAL TRIALS (edited name)

Postby dianne052506 » Fri Aug 02, 2013 3:50 pm

a
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

Felicia
Posts: 100
Joined: Sat Feb 18, 2012 3:44 pm
Facebook Username: Baddmom
Contact:

Re: FOR ALL ON CLINICAL TRIALS (edited name)

Postby Felicia » Sun Aug 04, 2013 9:05 am

Just wanted to give an update on my husband's trial. He is doing the HAI direct infusion at MD Anderson. Cycle is 28 days. Day 1 is HAI of irinotecan directly to the liver for 48 hours. He has to lie perfectly still during that time (inpatient). After they pull the line, he lies still for another 6 hours so it can heal up. Then Avastin through port for 1.5 hours. Whole thing lasts 4-5 days in hospital. We call this the "big one". Mid way through he does another Avastin systemically through his port. This is done either in Houston or home town. It's just regular clinic infusion, no hospital stay. We call this the "little one". Then do it all over again every month-ish. After 2 cycles they do a CT scan to evaluate if it is working.

He had the first Big One, but also caught some sort of chest cold at the end of it. This kept him down for a week. They decided to cancel the Little One that cycle due to his low WBC and RBC counts. For a while there he could barely walk to the bathroom, bedroom, living room and back. He was so worn out. He saw pulminologists and did all these lung scans to make sure it wasn't something horrible keeping him sick. THankfully it was determined that it was a simple cold. He had the 2nd Big One on July 25th. This time no illness with it, but he is pretty knocked down still. Not as bad as last time, but he has zero energy. Nausea is bad, too. This time he has had some blood in his stool which took us to the ER. That stopped and his blood counts seemed ok so they did not admit him. He follows up on Monday with his surgeon to do a scope and see what might have caused the bleeding. He is supposed to do his Little One this week, but I'm not sure if they will actually do it or not because of this issue. They don't run CEA until right before you are to do the 3rd cycle. They will do a CT scan then as well. So, you aren't supposed to have any data on whether or not it is working until then. Well, with all of this extra blood work, they did run his CEA. It is up (250 previously up to 309). Soooooooo, not sure if it's really working or not. Seems like it's not working and I hate him going through something that isn't doing anything. He wants to wait for the CT scan to know for sure. He will do that August 20th. We should know on the 21st the results.

Anyway, just wanted to send an update. We did learn from the doctor that many patients have done this 20+ cycles and a few have done it 40!!! So, it does work for some people which is encouraging.

I'm sure on the 21st we will learn of other studies that Michael can do and I will pass anything we learn along.

Felicia
DH age 48, dx 10/26/11 -cc stage4, liver mets
12/11 - 8/12 chemo
Liver resection 9/12 -- NED
12/12-its back
TACE, HAI chemo fail
tumors: lung,liver,LN,peri,bones
Hospice
http://www.caringbridge.org/visit/michaelfadams

andy21
Posts: 376
Joined: Tue Jun 26, 2012 4:07 pm
Location: N California

Re: FOR ALL ON CLINICAL TRIALS (edited name)

Postby andy21 » Mon Aug 05, 2013 9:14 am

T cells Trial at Roger Williams at Providence, RI

Based on my dad and other patients experience, I would advice against anyone enrolling in this trial.

The reason is IL2 makes one very weak and so any further treatment gets ruled out due to extreme weakness.
And it does not fully treat the liver lesions though it may have some beneficial effect which usually is not sufficient.
Caregiver: To 67 Yr father
diag. Stage IV, 5/12, liver mets
6 cycles Xelox/Avastin, Start 06/12
Stage 1 of Two Stage Resection Surgery in Dec, 12. 2nd line fails.
T Cell Trial May-Jul, 2013
Becomes a Heavenly Angel in August, 2013

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

Re: FOR ALL ON CLINICAL TRIALS (edited name)

Postby skypup » Mon Aug 05, 2013 10:37 am

Andy and Felicia,

Thank you for your updates! I will have one on my trial within a couple of weeks -- scan is next week. I think it's not working anymore, though... we'll see...

wireles99
Posts: 23
Joined: Fri Feb 22, 2013 4:39 pm
Location: Dallas TX

Re: FOR ALL ON CLINICAL TRIALS (edited name)

Postby wireles99 » Mon Aug 05, 2013 11:39 pm

Just thought I'd post the link from Cure Today magazine ... it's about PD-1

http://www.curetoday.com/index.cfm/fuse ... le_id/2132
DX 09/04 Stage II rectal/Stage I colon
Chemo & Radiation 2005
NED till 2009
recurrence Stage IV colon cancer
FOLFOX & Avastin 2009, and 11/12-01/13
FOLFIRI & Avastin 2010-2012
Erbitux 2012
Several lung mets
04/13 to present on clinical trials

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

Re: FOR ALL ON CLINICAL TRIALS (edited name)

Postby skypup » Mon Sep 02, 2013 11:38 pm

Dianne, I saw in your signature line that your trial was over and there was some progression. I'm sorry if I missed something, but the last I knew, I thought you were still stable. Can you fill me in if you feel like it? What is your plan now?

I had significant progression all of a sudden on my trial. It seemed to keep me stable for seven months or so, then wham! Liver mets grew fast and CEA rose fast. I'm off the trial, of course. Talked to the director of my research center and I am wait listed for three trials in case I want to move on one of them later. But because of my desire to alleviate the constant pain that has come with this latest progression, I plan on doing xelox plus avastin for a few months. My regular onc is thinking forever-ish, but I am thinking that hopefully stabilizing/shrinking and then doing another trial is more my style. We'll see in time...

Anyone else have a trial update?
Last edited by skypup on Tue Sep 03, 2013 7:59 am, edited 1 time in total.

jacekica
Posts: 733
Joined: Sun Aug 05, 2012 12:43 pm
Facebook Username: jasminka marout

Re: FOR ALL ON CLINICAL TRIALS (edited name)

Postby jacekica » Tue Sep 03, 2013 2:36 am

I am so sorry that trials didn't gave results, it seems all goes well in good direction and suddenly it reversed........
I hope it will be new better one to deal with mets.
Dx 2/11
surgery 5/11, T2N0MX, G2, SRC rectal ca, 22 cm removed
CT- numerous mets in abdomen - LN, 2 big ones on pancreas, one penetrated right urether. Surgery, they just take samples for PHD, 6 roundds 5FU, refuse further chemos

User avatar
sandrichelle
Posts: 396
Joined: Tue Feb 21, 2012 10:31 am
Location: Albany, NY

Re: FOR ALL ON CLINICAL TRIALS (edited name)

Postby sandrichelle » Tue Sep 03, 2013 8:50 am

Hi all
I am really far too early to know if this is working or not. The only thing we have to go by is my bloodwork. Day 15 showed a significant decrease in my cea with a lot of inflammation. Day 30 showed a significant rise back up and even higher than base but got a phone call from my doctor telling me that he wouldn't put too much emphasis on cea for many reasons but mostly because the lab used a different method so can't compare? Also the fact that all of my other numbers (liver, kidney, ect.) all look great so he said in his opinion I am doing fantastic! We will know for sure at day 90 on or around October 19thish...will keep you posted.
Dx Stage IV CC 02/12-56.1 CEA
Resection/Bye Bye Uterus 02/12
Folfox 03/12-08/12
05/01/12 3 TX CEA-6.5
07/23/12 10 TX CEA-5.0
09/18/12 PET shows 3 suspicious spots CEA -15.5
09/25/12 CEA- 23.8
10/23/12 CEA-51.8 1st of 6 FOLOFIRI
http://www.yeswecansir.com

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

Re: FOR ALL ON CLINICAL TRIALS (edited name)

Postby vickitwo » Wed Sep 04, 2013 9:48 am

Dianne,

If you wouldn't mind sharing, I would like to hear about how you are doing. I was also saddened to read that there was some progression. I was hoping that the trial that you were on might be an option for my DH if the Folfox/Zaltrap fails him. Anything that you are willing to share about the trial, results, next plan of action, etc. would be appreciated. You and all here continue to be in my thoughts and prayers. Praying for the scientists to come up with effective treatments to benefits us all.
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


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