Topic: Discussion of specific trials?

Discussion of specific trials?

Is there a place where patients undergoing specific trials can compare notes? See what's working what's not?  For example my mother is undergoing the agio phase 3 clinical trial at Sloan? I'm wondering how many on this forum have participated in that trial? Their experiences? Also on the topic of Keytruda doctors have said that it does not work on all patients? Wondering how many of you on this forum are currently taking Keytruda and having success? Anyone out there have negative outcomes with Keytruda? There is a woman in town who is having great success with it I do not believe she is on this forum.

Re: Discussion of specific trials?

Daisy,

My wife is meeting with a doctor tomorrow to see whether she can get into the phase 3 study of ag-120. We expect her to qualify, so I'm happy to compare notes.

I also was wondering about Keytruda and similar drugs. Do you need a specific marker from the genomic testing to qualify. I'm wondering why not everyone tries it?

I'll post again after we meet with the doctor. She's being moved to this trial because the first line and second line chemo regimens did not stop the progression of the disease.

Lou

3 (edited by marions Mon, 19 Jun 2017 20:47:32)

Re: Discussion of specific trials?

Daisy....so nice to hear from you. 

We encourage  patients and caregivers participating in clinical trials to communicate via the threads specifically provided for this purpose.
http://www.cholangiocarcinoma.org/punbb … .php?id=14

As the Phase III  AG-120 only recently has started the recruitment process, it's likely you are the first to begin the new thread.
The study is highlighted on our website: http://cholangiocarcinoma.org/claridhy- … receiving/
This is the study ID:  NCT02989857
Patients with advanced cholangiocarcinoma and an IDH1 gene mutation.  This mutation is likely to occur in 20 - 40 percent of "intrahepatic" cholangiocarcinoma patients

Daisy, we will watch for your entry in the above mentioned thread, Gavin will highight it with what we call a "sticky.

We don't yet have conclusive data regarding the efficacy of Keytruda, but the trials are ongoing and from what I have seen some have excellent results whereas others do not quite as well.  Hoping for our experts (those with personal experience or those sharing on behalf of their loved one’s) to chime in and help us out.

Best of luck to your Mom and please keep us posted.

Hugs
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

4 (edited by Daisy Sun, 09 Jul 2017 20:21:37)

Re: Discussion of specific trials?

So do I start a new thread under sticky or add to where the agio 120 trial has already been introduced?  Where do I go specifically to start a new thread :-)

Re: Discussion of specific trials?

Hi Daisy,

If you go here - http://www.cholangiocarcinoma.org/punbb … .php?id=14

Then you can start your thread with a headline so that everyone knows what the thread is about etc then just post away and hopefully others will then join in with discussing anything and everything about that trial!

And like Marion says, once you have started your thread I will then "stick" it so that it will always stay close to the top of the front page of the trials board so that as the board grows and gets bigger your thread will always stay near the top and on the front page of the board. I hope that makes sense to you!!

I hope that the trail goes well for your mum and I will be looking forward to hearing all about it.

Hugs,

Gavin

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.