do doctors share there trial data with new candidates ?

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ieowi
Posts: 202
Joined: Mon Jul 27, 2015 1:27 am

do doctors share there trial data with new candidates ?

Postby ieowi » Sun Oct 25, 2015 10:26 pm

I am wondering if physicians share the trail data results with new patients? Are they allowed to do that. Do new patients have the right to know what happened with previous patients ?
Father 58 yo , Colon cancer IV + 4 Lymph. 7/2015
K-ras Mutant,GNAS,FBXW7,PIK3CA, MSI-low
4 cycles irinotecan+FU5
developed abdominal met + lung met...Failed
4 cycle Oxaliplatin+folfox. peri met growing...Failed
unofficial trial !!!

behconsult
Posts: 264
Joined: Fri Jul 04, 2014 4:53 pm

Re: do doctors share there trial data with new candidates ?

Postby behconsult » Mon Oct 26, 2015 8:36 am

I would say no based upon being a researcher. They may know of individual cases but don't know the big picture until data crunch time. Unless a robust pattern has emerged, there are ethical issues related to what you propose. This is especially so based upon the study design as well if a placebo is also part of the arm.
Stage 4 Age 56 BrafV660E 5/14
spot on perit/ Right side tumor
Resctn 6/9/2014
Folfox strt 7/2014. 6 of 12 tx
Chemo induced DM2
Pet 4 mets to lung (1 cm, 6 mm) Xeloda/Avastin 9/16 to present.
Cryo-ablation to four spots- Collapsed lung/chest tube 2x
Possible local recurrence in a spot or two on PET. Stable CT

JFrog
Posts: 21
Joined: Wed Aug 26, 2015 7:55 am

Re: do doctors share there trial data with new candidates ?

Postby JFrog » Mon Oct 26, 2015 9:25 am

In my personal experience the doctors and the research nurses have been very open with what they have seen in their particular facility in general terms. They have told us the side effects they have seen and generally if there have been responses. This was the case at several facilities. One researcher even told us the mPFS on the early part of a PH. I trial. It does not hurt to ask!
DW dx 5/2012 Stage II @ age 45; MSS;
Emergency colostomy
5FU radiation
Resection 10/2012 and FOLFOX
Recurrence local and liver 5/2013
FOLFIRI 8 rds, Xeloda and repeat radiation
Liver res. 3/2014, repeat pelvic res. 7/2014
Liver(2) and lung recurrence(1) 9/2014, Iri w/ pan until progression then FOLFOX w/ Avastin until progression
MDA Targeted Therapy Clinical Trial 8/2015, Progressed10/15-off trial
Iri and pan. 11/2015
SBO 2/16 with successful resection 3/9/16
Clinical Trial AZD1775, 4/21/16

StephenWinsToday
Posts: 39
Joined: Mon Jun 22, 2015 12:08 pm
Facebook Username: Stephen Savage-Estrada

Re: do doctors share there trial data with new candidates ?

Postby StephenWinsToday » Mon Oct 26, 2015 11:24 am

I routinely ask my onc about the other patients on the trial I am on. Obviously no names are ever shared, but they update me on how certain people are doing, if the drug is still working, side effects, etc.
7/15 DX'd at age 28 w/stage 4 crc. Met to mesentery. Also lynch+
7/15 right hemicolectomy
8/15 started 12 rounds FOLFOX.
2/15 Nanoknife. Gallbladder removal. resections. Complications landed me in ICU for 1 week. 8 blood transfusions.
5/15 Nanoknife failed. Enrolled in phase 1 trial of MPDL3280a (Atezolizumab) & Avastin.
7/15 CT shows I am responding to trial drug. All tumors and nodules shrinking.
8/15 CT scan shows stability of all nodules and target tumor
10/15 CT scan shows continued stability.

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

Re: do doctors share there trial data with new candidates ?

Postby KWT » Mon Oct 26, 2015 11:47 am

StephenWinsToday wrote:I routinely ask my onc about the other patients on the trial I am on. Obviously no names are ever shared, but they update me on how certain people are doing, if the drug is still working, side effects, etc.


Well, what do the say?

StephenWinsToday
Posts: 39
Joined: Mon Jun 22, 2015 12:08 pm
Facebook Username: Stephen Savage-Estrada

Re: do doctors share there trial data with new candidates ?

Postby StephenWinsToday » Tue Oct 27, 2015 12:16 am

The last time I asked was last month. I was told everyone on my arm of the trial is still doing well, with one guy hitting month 18 of stable disease with the study drug. I'll be asking again this Thursday when I get my infusion.
7/15 DX'd at age 28 w/stage 4 crc. Met to mesentery. Also lynch+
7/15 right hemicolectomy
8/15 started 12 rounds FOLFOX.
2/15 Nanoknife. Gallbladder removal. resections. Complications landed me in ICU for 1 week. 8 blood transfusions.
5/15 Nanoknife failed. Enrolled in phase 1 trial of MPDL3280a (Atezolizumab) & Avastin.
7/15 CT shows I am responding to trial drug. All tumors and nodules shrinking.
8/15 CT scan shows stability of all nodules and target tumor
10/15 CT scan shows continued stability.

Nik Colon

Re: do doctors share there trial data with new candidates ?

Postby Nik Colon » Tue Oct 27, 2015 12:18 am

StephenWinsToday wrote:The last time I asked was last month. I was told everyone on my arm of the trial is still doing well, with one guy hitting month 18 of stable disease with the study drug. I'll be asking again this Thursday when I get my infusion.

That's awesome Stephen! Best wishes :)


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