Topic: NIH trial - still working!

I returned last week from NIH with stable results. No change from scans done two months ago. I am happy with stable! I am even more happy that stable came without chemo!! They say as long as there is not growth - the cells are still doing their job. I go back in March for next checkup and will keep everyone posted.

I have really enjoyed talking with so many of you over the past few months, it has been great to put voices to names. It helps to share our stories, and I want to be able to help answer any questions that I can. My prayers are with each and everyone of you...stay strong, keep the faith and God Bless you!!

Lots of Love,

Re: NIH trial - still working!

Hi Melinda,

I was adding your data to my cholangiocarcinoma database and your posts on your participation in the NIH trial really got my attention.  Thank you so much for being a pioneer in this clinical trial and posting your results to the discussion boards.

Similar to you, my wife has intrahepatic cc and had a resection (72% of liver removed for a 6.4 cm tumor) with clear margins.  Unlike you, however, she had a single positive lymph node and adjuvant therapy.  The therapy consisted of 4 cycles (rounds) of GemCis, GemCis on both days 1 and 8 and a Neulasta shot for low WBC count on day 9, and the 3rd week off.  Also, she is scheduled to have 3D radiation therapy with 5FU starting next Monday, which will be every M-F for the next five weeks.

She had an enhanced CT scan on 2/15/13, which was 0.43 years after her surgery, and it showed no signs of cc.  I suspect recurrence will occur within the first year after her surgery, since that is the case for 19 out of the 24 patients (79%) in my cc database who have intrahepatic cc and have had a resection.  Maybe she'll fair better because only three of the 24 had radiation with chemo and for two of those the chemo was cut short. When, and if, this occurs, this clinical trial will definitely be a possible course of action.


Please be advised that any advice or information in my posts is my personal opinion only and is not intended nor implied to be a substitute for professional medical advice.  ALWAYS seek the advice of your physician or other qualified health care provider.