• From: Melbourne, FL, USA
  • Registered: Tue, 08 May 2012
  • Posts: 9

Topic: Any experience or suggestions regarding belinostat clinical trials?

Hi! everybody, I want to first thank the moderators of this forum, as well as everyone on it for sharing their experiences.

I'm posting for the first time, on behalf of a friend who's recently been diagnosed with cholangiocarcinoma. He is seeing doctors at Moffitt and was told that since the tumor had affected both sides of the liver, and was impinging on the secondary ducts, resection is ruled out.

They have re-stented him once, then placed external drains on both sides twice, in an attempt to get his bilirubin count down, but no luck yet.

Now, they are considering enrolling him in the active clinical trial with belinostat. I was wondering - does anyone on this forum have experience with this trial or opinions about it. Any information will be very welcome, since we are quite worried about the implications of signing up for it.

thank you very much
venkat

  • Lainy
  • Lainy
  • Moderator
  • Offline
  • From: Phoenix AZ
  • Registered: Fri, 13 Jan 2006
  • Posts: 8,213

Re: Any experience or suggestions regarding belinostat clinical trials?

Dear venkat, welcome to our extraordinary family but sorry you had to find us. You are some kind of friend to step up to this journey that no o9ne wants to take!
I have not heard of that trrial but until others come forward you might try our Search engine at the top. Type the trial in and see if anything comes up.  Mmm stenting usually helps for the Billie Ruben, have they checked him for an infection. Blood infections are common with stents and can cause counts to go haywire. Can you tell us where the CC is located  and the Stage he is at? Weekends are a tad slow here, but I hope someone may have your answer sooner than later. Good friend, please kjeep us posted.

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.
  • From: Melbourne, FL, USA
  • Registered: Tue, 08 May 2012
  • Posts: 9

Re: Any experience or suggestions regarding belinostat clinical trials?

Hi! Lainy,

Thank you so much for replying. This is an extraordinary family indeed, and a very inspiring one!

I have done some research, which indicates that HDAC inhibitors such as Belinostat are in very early stage clinical trials for CC, but have been in trials for other cancers in recent years.

As for my friend's CC, he was diagnosed in April 2012, he has a single tumor that is impinging on the bile ducts, including secondary ducts, on the left and right sides of the liver (which is why the doctors at Moffitt Cancer Center have presently ruled out resection). It has not metastasized.

He did have an infection in the early days, but not any more. Just slight fevers in the evening, that he controls with ice packs and the occasional motrin.

The initial internal stents seemed to work for a week or so, but their the doctors deemed the stent to have slipped, and inserted two internal stents, one each on the left and right sides. That didn't help much either, and now my friend has two external drains. With the drains in place, we are still waiting for the bilirubin levels to drop from 13 (or 13000), no luck yet. That's where the possibility of the belinostat trials was raised.

As you correctly indicated, there is not much by way of experiences with CC and belinostat. That is why I was hoping there was someone here on the forum that could shed some light or share their experiences with it.

Also, anyone willing to share their experience about care at the Moffitt Cancer center at Tampa, FL will be very welcome. Perhaps this is not the right discussion board for that, though?

Thank you
venkat

  • Lainy
  • Lainy
  • Moderator
  • Offline
  • From: Phoenix AZ
  • Registered: Fri, 13 Jan 2006
  • Posts: 8,213

Re: Any experience or suggestions regarding belinostat clinical trials?

Venkat, you can post anything you want here, we are a unique open forum. On our Home Page is a category of Hospitals, many that qre recommended have had extensive experience with CC. You want to be with a major Cancer Center to fight this one. In our search engine at the top of the page type in Moffitt and see if anything comes up in posts. If not give our Hospital list a try. Best of luck and don't hold back!

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.