• From: Ontario, Canada
  • Registered: Fri, 01 Mar 2013
  • Posts: 5

Topic: Clinical Trials

Hi...My name is Laura and I am new here. I am writing today requesting to hear some positive stories about member participation in clinical trials.

I myself have been invited to participate in a phase 1 trial--I don't know all the details yet, just that it involves examining my blood and tumour samples for genetic markers that will allow me to be more closely matched to a trial drug to fight my cc.

I guess I am looking to hear some real life stories of participation in trials--including what exactly is involved--for example, my dr indicated  it required more visits to the hospital to stay on top of progress. I have been feeling really kind of down in the dumps lately and would love to hear any positive stories you feel like sharing where trials are concerned.

Thanks in advance, Laura

  • Registered: Fri, 12 May 2006
  • Posts: 8,312

Re: Clinical Trials

Laura....great question.  If I may ask, which trial has been recommended to you?
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
  • Registered: Thu, 09 Sep 2010
  • Posts: 539

Re: Clinical Trials

Laura, Welcome and sorry you had to find us. I am glad to tell you I was in a clinical trial involving a liver transpalnt, I am even more excited to tell you I am starting my 4th year of cancer free. I have an amazing story to share, there is HOPE! Please read my story at www.catherinedunnagan.com under the telegraph link.
Lots of prayers and HOPE-Cathy

4 Reply by Pamela (edited by Pamela Sun, 03 Mar 2013 21:20:48)

  • From: Uniontown, Ohio
  • Registered: Fri, 23 Sep 2011
  • Posts: 1,500

Re: Clinical Trials

Hi Laura,

I've told you a few things before about my daughter, but I don't think I am repeating myself. If I am, I apologize. My daughter participated in a trial that sounds similar to what you are talking about. It was at the University of Michigan Cancer Center. My daughter had to give blood, saliva, cheek swab, and have another liver biopsy for this study. We haven't heard any results yet, probably because she is in the process of having surgery at the end of this month. When she was first diagnosed back in Aug. 2011, she took part in a clinical study where she received Gem/Cis and 5FU all together. It did cause a lot of shrinkage in her tumors. She had to quit the Cisplatin after a long time because her platelets kept going too low and her doctor was afraid that she might develop kidney problems from being on that particular chemo too long. She has done well on all of her chemos and has also had Theraspheres one time. The verdict is still out as to how well that worked. She is still doing very well and like I said is going to have surgery #1 of 2 on March 26th to make sure she has no tumors outside of her liver, remove some small tumors on the left side of her liver, and cut off the blood supply to the right side for a liver resection to be done 6 weeks later. I hope this helps some. Take care.

Hugs,
-Pam

My beautiful daughter, Lauren Patrice, will live on in my heart forever.

My comments, suggestions, and opinions are based on my experience as a caretaker for my daughter, Lauren and from reading anything I can get my hands on about Cholangiocarcinoma. Please consult a physician for professional guidance.

Pamela's Website

  • From: New Jersey
  • Registered: Tue, 04 Dec 2012
  • Posts: 19

Re: Clinical Trials

Hi Laura. A similar protocol was recommended to my husband by Sloan in NY and we intend to pursue it. It is called cell path. It is not covered by insurance so I'm not sure even if they find a drug that is compatible it will be covered by insurance but the system may be different in Canada. Ask that question.
Does anyone have experience with this situation and what was the result? We certainly will fight the insurance company but wondering if anyone has gone down this path.

  • From: Ontario, Canada
  • Registered: Fri, 01 Mar 2013
  • Posts: 5

Re: Clinical Trials

Hi everyone...thanks for your feedback so far. I still don't know the actual name of the trial. The dr just presented it to me in general terms at our  last meeting and I am due to see them again within the month so that's when I will get all the paperwork with details. As far as I know, it falls under our public insurance system here, so thanks to heavens I shouldn't have to pay...for this alone I am eternally grateful. Keep the stories coming...it cheers me!

Take care, Laura

  • From: Fenton, MO
  • Registered: Fri, 18 Jan 2013
  • Posts: 29

Re: Clinical Trials

I did a Phase 1 study drug at Sarah Cannon Research Center in Nashville, TN. I had an unknown primary to start and I did a study that matched up to one of my tumor markers. I live 5 hours away and drove there 3 out 4 weeks a month. To start I was there Day 1,2,3,8,9. Then did blood tests at home on Day 15. Then returned to TN the following week to start Day 1 all over. I was on 2 chemos plus study drug and as time went on they dropped other 2 chemos and I only had to be there Day's 1 and 8. Initially we saw improvement in my tumors but after chemo drop we realized the dropped did better than study drug and we had a probable primary cancer of CC by then. I did the study for about 6 months. I was also one of the last people they let in so most of the figuring out dosage part had been done.
So I'm now doing SOC chemo of Cisplatin and Gemzar. If you have any more questions please ask.
Cathy

  • From: Germantown, Maryland
  • Registered: Sat, 16 Mar 2013
  • Posts: 2

Re: Clinical Trials

I was diagnosed of stage IV Cholangiocarcinoma ( Bile Duct) in Jan 2012. It spread to liver and a few lymp nodes. I had Chemo (Gemzar and Oxaliplatin) from Feb 2012 thru Aug 2012. In the beginning the tumor marker decreased, but this combination stopped working after Jun 2012. My oncologist put me on the Xeloda. It had some effect for a while, but it, too, stopped working in Dec 2012. I had bad side effects ( low platelets, discoloring of nails, peeling of feet and hand skins, numbness and tingling of fingers and toes, etc). I also had a radiation of one section of liver. During the radition, the cancer invaded a couple of ribs). Now, I am looking for a clinical trial. Can anyone sugest an effective clinical trial.  Thanks for you help.

William Lawrence
Maryland

9 Reply by PCL1029 (edited by PCL1029 Sat, 16 Mar 2013 17:53:41)

  • Registered: Fri, 15 Oct 2010
  • Posts: 1,777

Re: Clinical Trials

Hi,
It is impossible to suggest an effective clinical trial without knowing of what kind of cholangiocarcinoma (CCA) that you may have.
Below is our web site informational link  onclinical trials available to different types of CCA.
Since you are living in Maryland, clinical trial # 46 TIL conducted by NIH may be worth investigating. we have a member on this trial not long ago and you can look it up for further info.

http://www.cholangiocarcinoma.org/punbb … 794#p70794

http://www.cholangiocarcinoma.org/clinicaltrials.htm

God bless.

Please know that my personal opinion is not intended nor implied to be a substitute for professional medical advice. If  provided, information are for educational purposes.Consult doctor is a MUST for changing of treatment plans.
  • Gavin
  • Gavin
  • Moderator
  • Offline
  • From: Scotland - Dundee
  • Registered: Tue, 23 Sep 2008
  • Posts: 5,048

Re: Clinical Trials

Hi William,

Welcome to the site. Sorry that you had to find us all and I am sorry to hear what you are going through right now. But I am glad that you've joined us all as you are in the right place for support and help, and I know you will get loads of both from everyone here.

In addition to the links that Percy has given you about clinical trials we also have a clinical trials board here that may be of use to you -

http://www.cholangiocarcinoma.org/punbb … .php?id=14

I do hope that you will find a trial that will be of great use to you and I wish you every success with that. And please, keep coming back here and let us know how you get on with everything. We are here for you and we care.

Best wishes,

Gavin