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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