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

Re: Sorafenib Tosylate and Erlotinib Hydrochloride in Treating Patients Wi

Sidig.....You should have been referred to another oncologist willing to search for another clinical trial.  In fact, you may just want to search out someone else.
In the meantime you might want to take a look at our clinical trial listing:
http://www.cholangiocarcinoma.org/clinicaltrials.htm
Sidig....you need to take a look at the criteria as previous chemotherapy treatments may exclude your Mom's participation in a specific trial. 
Contact numbers are included in each of the listed recruiting or upcoming clinical trials. 
Let me know if you need help with all of this. sharpeilover had mentioned that we should have something available for those searching for clinical trials.  I will make sure to prepare it within the next few weeks. 
Good luck and remember the next treatments very well may attack the non-responsive tumor. 
Hang in there.
All my best wishes,
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
  • Sidig
  • New Member
  • Offline
  • Registered: Tue, 18 Jan 2011
  • Posts: 12

Re: Sorafenib Tosylate and Erlotinib Hydrochloride in Treating Patients Wi

Marion, thank you for the help, it has been a daunting task looking searchin through the trial information, so the link you gave me is helpful.  She had a 2nd opinion with Mayo in Jax and honestly we really liked them...spent a lot of time with her covered all option (at the time), so we are going for a consult with them as well.  We have also already followed with the cancer center at Emory in Atlanta, just a slow process, everything is 2 weeks, 2 weeks!  We will have to have all our t's crossed when we go in next time with all our questions....I'll let you and the community know how it goes. Getting bounced from the first trial is depressing because it is seemingly working on existing tumors (they were shrinking) but with another one popping up they took her out.....we support as much as we can, but of course she was really hoping the first one was the ticket!

Thank you again, Sidig

  • mn
  • Senior Member
  • Offline
  • Registered: Tue, 19 Jul 2011
  • Posts: 93

Re: Sorafenib Tosylate and Erlotinib Hydrochloride in Treating Patients Wi

I know with the clinical trial they wanted my mother to start, if the cancer came back anywhere, you would be taken out of the clinical trial.  My mom opted for not doing the trial, however, they did the exact same treatment as the trial on her.  This treatment did not work.  I feel she would have been more disappointed being taken out of the clinical trial.  Best of luck with the next chemo regimen.

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

Re: Sorafenib Tosylate and Erlotinib Hydrochloride in Treating Patients Wi

Sidig....This cancer is quite resistant to chemotherapy. You are doing everything right by continuing to search out other options.  You

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, 21 Oct 2010
  • Posts: 20

Re: Sorafenib Tosylate and Erlotinib Hydrochloride in Treating Patients Wi

I would like to give you an update on my Dad.  He is still receiving ,the Sorafenib & Erlotinib, although the study has been suspended.  He received the results from his CT scan on Tuesday.  His tumors are the same size and there is no change.  Good news in my book!  In October, my Dad will have been on this study for 1 year.  He is still playing golf, planning vacations, working out at the health club and watching his grandchildren.

  • Lainy
  • Lainy
  • Moderator
  • Offline
  • From: Phoenix AZ
  • Registered: Fri, 13 Jan 2006
  • Posts: 8,315

Re: Sorafenib Tosylate and Erlotinib Hydrochloride in Treating Patients Wi

Dear Thirdone, that is excellent news on your Dad. Wishing him continued success. No growth is good in any book! So is golf, working out and vacations!

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.
  • Gavin
  • Gavin
  • Moderator
  • Offline
  • From: Scotland - Dundee
  • Registered: Tue, 23 Sep 2008
  • Posts: 5,057

Re: Sorafenib Tosylate and Erlotinib Hydrochloride in Treating Patients Wi

Hi Thirdone,

Thank you so much for letting us know how your dad is doing. This is great to hear that your dads CT scan has shown no tumour growth, good news as you say! Golfing, planning vacations and working out too, I love that! And I know that your dad watching his grandchildren will bring many smiles to his face, and will also keep him very busy as well!!

Best wishes to you and your dad,

Gavin

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

Re: Sorafenib Tosylate and Erlotinib Hydrochloride in Treating Patients Wi

thirdone....Stable has taken on a new meaning when dealing with this disease.  Congratulations.  Your Dad is doing so well especially with the Erlotinib, which can be quite harsh and difficult to tolerate.  Thanks for sharing the great news with us.
All my best wishes,
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