1 Topic by kathyb (edited by kathyb Sat, 10 Mar 2012 10:01:48)

  • From: Iowa
  • Registered: Mon, 15 Feb 2010
  • Posts: 373

Topic: Phase I Clinical Trial Working for me

Great MRI report!  Original tumor stable.  Three new tumors on liver can't be seen.  Spot by stomach shrinking.  Enlarged lymph node on spine shrinking.  Tumor markers went down 60 some points.

This is a phase I clinical trial.  There have been 55 people nation wide (at all three Mayo sites) on it and they have extended it to 55-65 more people.  I have been on this trial longer than anyone (since July 11) and it's working for me.

http://clinicaltrials.mayo.edu/clinical … _id=100871

Thanks be to God!


(Original diagnosis July 09 - inoperable Klatskin tumor, cholangiocarcinoma, stage IV, prognosis 3-14 months)

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  • From: Phoenix AZ
  • Registered: Fri, 13 Jan 2006
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Re: Phase I Clinical Trial Working for me

Kathy, another MIRACLE HERO! This is such great news! What a way to Spring in to Spring so full of HOPE. Keep up the good work, you are much loved and we are looking for more good news!

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
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  • Registered: Fri, 12 May 2006
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Re: Phase I Clinical Trial Working for me

Kathy....great, great, news.  Are you in the control group receiving Gemcitabine also?

http://clinicaltrials.gov/ct2/show/NCT00878163

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
  • From: Iowa
  • Registered: Mon, 15 Feb 2010
  • Posts: 373

Re: Phase I Clinical Trial Working for me

Marion,

Yes, I receive Gemcitabine once a week for three weeks in a row.  Then a week off.  The oral drugs are taken daily.

Kathy

  • Registered: Fri, 12 May 2006
  • Posts: 8,311

Re: Phase I Clinical Trial Working for me

Thanks Kathy, nice to know which control group you are in.  I wonder how the other group is fairing? Guess, we will have to wait for the report to come out.
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
  • Gavin
  • Gavin
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  • From: Scotland - Dundee
  • Registered: Tue, 23 Sep 2008
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Re: Phase I Clinical Trial Working for me

Hi Kathy,

What great news! Thanks so much for sharing and I hope that the good news continues to roll for you! Looking forward to hearing more good news from you!

Hugs,

Gavin

  • From: Kungsbacka, Sweden
  • Registered: Mon, 10 Jan 2011
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Re: Phase I Clinical Trial Working for me

WOW this is wonderful!! Hope!!!!!

No matter whether you think that you can, or that you can´t, you´re right
//Henry Ford

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  • From: Alabama
  • Registered: Thu, 15 Dec 2011
  • Posts: 368

Re: Phase I Clinical Trial Working for me

Good news!! What is the GDC-0449? I'm already on Erlotinib.

~Tiffany~ 31 years young wink Fighting CC since 10-27-2011
Wife to Brian; Mommy to Carter (7) and Madison (4)
http://tiffanyschwantes.wordpress.com/
I balance my life with my breath.

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  • From: Iowa
  • Registered: Mon, 15 Feb 2010
  • Posts: 373

Re: Phase I Clinical Trial Working for me

Tiffany,

GDC-0449 is also called vismodegib - brand name: Erivedge.  It was just approved for "metastatic or recurrent locally advanced basal cell carcinoma in adults who cannot be treated with surgery or radiation."  That's not what I have so it is not FDA approved for cc.  The National Cancer Institute pays for this drug on my trial.

http://www.cancer.gov/cancertopics/drug … vismodegib

Kathy

  • From: Alabama
  • Registered: Thu, 15 Dec 2011
  • Posts: 368

Re: Phase I Clinical Trial Working for me

Thanks for the info!!

Are you having a face rash due to Traceva? I do, and I can't get it under control!

~Tiffany~ 31 years young wink Fighting CC since 10-27-2011
Wife to Brian; Mommy to Carter (7) and Madison (4)
http://tiffanyschwantes.wordpress.com/
I balance my life with my breath.

tiff1496's Website

  • From: Indiana
  • Registered: Mon, 10 Oct 2011
  • Posts: 140

Re: Phase I Clinical Trial Working for me

My Oncologist was hinting on Friday that at some point I might have to be in a clinical trial.  He is running out of chemo options to treat me  :-(

Cindy

  • From: Iowa
  • Registered: Mon, 15 Feb 2010
  • Posts: 373

Re: Phase I Clinical Trial Working for me

Tiffany,

I got the terrible face "rash".  It actually looked like the worse case of acne a teenage boy could have.  My oncologist put me on Minocycline HCL 100 mg caps twice daily.  I think it's an antibiotic, but evidently not a really strong one because it doesn't work for other infections I might get.    This med has worked wonders for me in keeping my face clear and it doesn't affect my stomach as other antibiotics do.

Cindy,

My view is that a clinical trial is a great hope.  Right now I would rather be on a clinical trial than standard chemo for cc.  Maybe I have to think this way since I'm on a clinical trial smile

God bless all of you,
Kathy

  • From: Uniontown, Ohio
  • Registered: Fri, 23 Sep 2011
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Re: Phase I Clinical Trial Working for me

Kathy,

Happy to hear the great news. Keep up the great work.

Love, -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.

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  • Gavin
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  • From: Scotland - Dundee
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Re: Phase I Clinical Trial Working for me

Hi Kathy,

More great news! Great stuff and thanks for sharing it with us all! Love hearing these good news stories and I hope that they continue for you!

Hugs,

Gavin