[Joe]

Panobinostat - anyone with experience with it?

by Joe on Sat Oct 25, 2014 11:37 pm

I will be doing a trial with the new drug panobinostat (Farydak). Has anyone else been on it? And what is your opinion of it?

[Multibilly]

Re: Panobinostat - anyone with experience with it?

by Multibilly on Sun Oct 26, 2014 8:28 am

Joe,

I can't see your earlier posts given the way you are logged in, so I'm not sure what your history is. It would be helpful if you put your question in the context of what treatments you've had and if you are newly diagnosed, high risk or relapsed/refractory, etc.

Also, which specific panobinostat trial are you looking at?

[joe]

Re: Panobinostat - anyone with experience with it?

by joe on Sat Jan 30, 2016 9:19 am

Hi,

I have been on panobinostat trial drug with Revlimid and dex. Working great for me. Prior nothing worked. Stem cell transplant lasted 2 weeks. Nothing was working, Today I have 0 M-spike spike. 11 months feeling better, so there is always hope. My 5th year with myeloma.

Is anyone else on panobinostat? Please advise.

Thank you. Peace love to all. Let's get a cure. Joe.

[Sun45]

Re: Panobinostat - anyone with experience with it?

by Sun45 on Thu Feb 16, 2017 9:32 pm

Hi Joe,

My dad is on Year 5. Similar story as yours. He'll start the panobinostat (Farydak) Monday. Will post how he does with it. He's the first patient they've had try it, so they're all kind of building up side effects, especially diarrhea. From what I can tell, you didn't experience any?

Sending strength to you!