[phil47Participant]

I started on R&V as maintenance treatment in Jan (13). My neutrophil count dropped over the first 4 week cycle (a known side effect) and by the end of it I was neutropenic. I had a weeks break before starting cycle 2 to allow my neutrophil count to recover and cycle 2 followed the same pattern. However, my neutrophils have failed to recover since the end of that cycle and i have now been neutropenic for 3 weeks. Worryingly last week my count dropped from 0.92 to 0.52 despite 2 GCSF injections. My consultant is not particularly concerned that the myeloma is returning but doesn't know what has caused it. I have another week to try more GCSF and if no improvement its another bone marrow biopsy. Very quirkily, my moustache growth has also ceased although beard growth is normal! I have also had 3 or 4 heat lump type irritations which have swollen when scratched and wept a clear pus slightly. I know there aren't many of us on this combination of drugs but has anyone had a similar experience and have you found a cause?
Thanks
Phil

[AliParticipant]

Hi Phil

Its my Mum on the Rev/Vorinostat maintenance. She started in December last year. You are right, theres not many people on it as yet so its hard to get an understanding of side effects etc. We dont really get any answers from Mums consultant about Vorinostat, things are so unknown, but I guess thats why its a trial.

Im sorry to hear you are having probs with you neutophils. My Mum is one of those patients who does not want to know the facts and figures, so each time we have been to see her consultant we have just been told everything is within "normal" range – I hope that if she were neutropenic we would have been told!

Will carry on later as she has just arrived for her tea!

Love Ali

[AliParticipant]

Im back 🙂

Month 2 Mum had an awful, kind of allergic reaction, silmilar to your heat lumps but on a larger scale – she was given cetirizine to help and it did. Thought it was a reaction to the Vorinostat but its not happened since. Mum says she can cope with the side effects she is getting, fatigue and tummy troubles mainly (the tummy troubles I think are due to the Revlimid, as she had this on her frontline treatment).

I do know that Babs on here was also on this treatment but she has been pulled off the Vorinostat as it did not agree with her – hopefully she will come along and add to this thread.

BMB at 6 months after commencing maintenance therapy isnt it?

Funny about your moustache growth – fortunately Mum does NOT have that problem:-)

Please keep us informed on how you are doing

Take care

Love Ali

[phil47Participant]

Hi Ali,
Thanks for the info. Yes, I have tried anti-histamines of one sort or another as my skin has generally been extra sensitive since my SCT and i think they do help a bit. Fortunately I've not had any physical side effects so its really frustrating about the neutrophils, I want to jet off somewehere for a holiday!
All the best
Phil

[BabsParticipant]

Hi Phil,
I used to come out in very dry blotches on my face which were very red and sore from the outset of starting on Revlimid and Vorinastat, then I had bad lung pains which were so bad I was admitted into hosp through A&E but all checked out with my health so we put it down to the pills, as it was only six weeks after my starting on the trial and I was feeling very unwell,also we were booked to go away for Christmas to a hotel with our daughter and daughter in law,we made decision to stop the pills and speak to the team after the Christmas break.(I would have rang them if it had not been the Christmas break)
After the break we spoke to the team, saw the consultant who said they could not tell which of the drugs was making me so unwell but asked would I consider going back on the Revlimid, the tried and tested maintenance drug, this we agreed to and I have been back on it since with little side effects, the odd one is cramp in my little toes on my left foot, very painful.
I saw the consultant last Friday, he wants me to try the Vorinastat again, as we have holiday booked in six weeks time he has agreed we should start after our return – SO WATCH THIS SPACE –
Love Babs

[Author]

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