[bikesteveParticipant]

Hi just interested to know of any others that have had experience of using Farydak.

I was put on this in October in combination of Velcade & Dexamethasone and only managed 1 and 1/2 cycles [3 weeks]  before I was taken off it as the side effects mainly the Atrial fibrillation were in danger  of causing permanent damage. The neuropathy to y hands & feet is severe [little sensation so drop things]I lost the mucus membrane from my mouth all the way through my body so eating became painful. I still now cannot smell or taste. The fatigue was extreme, to the extent I stumble going up the stairs and tore the meniscus in my knee. My body is still trying to recover but, I have now been hospitalised twice in 5 weeks with a Fungal lung infection & chest infection. I am now hoping I can remain relatively well to get Cardioverted in March. My thinking is how did a drug with such severe side effects get approval as instead of helping me cope with MM it has made my life a whole lot worse, as none of these problems have gone 3 months on.

[peterlParticipant]

Hi B/Steve,

I’ve just finished the first cycle (3 weeks) of VFD (20mg Farydak, 6 times, over the three week period).  I had ECGs to check the Farydak’s heart effects – all ok.  But I did have serious bleed problems, after the 6th (last) capsule, which meant a visit to A&E.  I had a mtg with my excellent haematology consultant a couple of days ago, and she told me my blood platelets (that provide clotting) had reduced from a count of 140 down to 20!  Which explains the bleeds.  All bloods are being closely monitored, and I’ll post any new information in weeks month or so.  Good luck to you, and regards,

Peter

[andygParticipant]

Hi Bikesteve,

I know a lot will have changed since your original post but I thought I’d give you my experience of Panobinostat(Farydak) Velcade and Dex.
I’m now on my last cycle, cycle 16, and have had a reasonable response.
Before I started I had my heart checked over by cardiology, ultrasound and Echocardiogram, and before every cycle I’ve had an ECG and Blood tests. I can’t remember the name of the side effects they were looking for, thanks chemo brain, but I couldn’t have Ondansetron for nausea because of the possibility that it can cause the same problems.
Side effects were mainly nausea, fatigue and of course the usual Dex problems. My Panobinostat was reduced from 20mg to 15mg about halfway through my treatment and that helped with my nausea.
I’m now hoping for a break from chemo before I have to restart treatment. Even a few months would be nice after nearly seven years of constant pill popping.

Every day is a gift.

Andy

[Author]

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