Drug trial

Can anyone advise if they are taking the drug Panobinistat along with Ruxolitnib?  I was diagnosed with MF 7 years ago and started on a trial 3 1/2 years ago. My spleen was 23cm and is now 17cm and not budging!!! The panobinistat has very unpleasant side affects (bathroom related)!! I take 25 mg of Pan every other week,every other day for 3 days. I take lots of Imodeum to assist with the cramps etc but lately it's not working as well as it used to.I've asked at the hospital on several occasions if any results have been released as they do not know if Rux on its own is as good as these 2 drugs together. The trial is with Novartis but the hospital has not received any reports. I'm due back to the hosp at the beginning of April and am soooooo very tempted to come off this trial. Thanks for reading and letting me have a moan!!!!

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  • I have MF for 91/2 yrs now taking Rux was in the trial 2008-2011. I was taking 20mg twice a day until 6wks ago hematologist lowered my Rux to 10mg twice a day. I fear my spleen will enlarge causing pain as it did after 2 yrs on Hydroxyurea when diagnosed in2006. My rux was decreased because of low platelets,transfusions every 4wks for 2 yrs now. I was debating about doing another trial.

    I am sorry I can't answer your questions about your drug ,but wish you the best of luck. It seems the dr could address your concerns as all meds do have lots of side effects. I have been very fortunate only low rbc,just recently low platelets.

    Praying all goes well for you

  • Many thanks for replying. When I first started the trial I was having weekly trans which very gradually reduced - the last one I had was 9th Feb my bloods were at 8.9. I'm due in for another trans next Tuesday but this is the longest I've ever gone!!! My spleen did go down to 13cm at one stage but I was taken off all meds for a couple of weeks and the spleen went up to 17cm and has never budged. I've never had spleen pain which sounds very uncomfortable I so hope yours won't increase and you are in a position to have regular monitoring. I'd rather have the trans than a more enlarged spleen but we have to be guided by our haems. Wishing you the best of luck also and would definitely look into any new trials that maybe out there. 

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