[Ang287Participant]

My husband is on the myeloma XI trial and is now nearly 4 years in remission following his stem cell transplant. The maintenance he was randomised for after the transplant were Revlimid and Vorinostat. We saw his Consultant yesterday as he is now stopping the Vorinostat. Apparently it has already been proven on this trial that the Vorinostat is not adding any benefits to the Revlimid so there is no point in taking it any longer. This is a nice present for his 60th which is in 2 weeks as now only one medication to have to deal with and I am hoping that he now has less side effects. He always seemed to be more irritable on weeks 1 and 3 when taking the Vorinostat so let’s see what happens now. Is anyone else on this trial and on these two drugs?
Angela

[debbiegParticipant]

Dear Angela

Thank you for posting on the Discussion Forum.  I am sorry that you haven’t received any replies to date.  My name is Debbie and I am one of the Myeloma Information Specialists here at Myeloma UK.

We understand from the Myeloma XI Trial Office that all patients who were receiving vorinostat (Zolinza®) within this trial have recently been asked to stop taking it as data collected to date has identified that some patients were experiencing side-effects beyond the acceptable threshold on this drug.  We have additionally been informed that a letter from the trial office with further explanation will be forwarded to all participating patients via their hospitals.

I hope your husband is feeling better, and if you have any questions, or would like to talk things through, please feel free to call the Myeloma Infoline on 0800 980 3332, or alternatively you can email directly to askthenurse@myeloma.org.uk

With best wishes

Debbie Gardiner
Myeloma Information Specialist

[Ang287Participant]

Thank you so much Debbie for posting this. It is so helpful and reassuring. My husband was a bit upset at first as he thought this might be the cure! He was very irritable and difficult to live with when he was on the Vorinostat. I definitely knew it was week 1 or 3 of every month so I am very happy he has been taken off it, especially as the side effects are not acceptable. It’s still early days but I think he is a lot happier. We will await the letter. Onwards and Upwards xx
Angela

[LollyParticipant]

Hello Debbie
My husband steve is also on the XL trial
The vorinstat also was stopped , with no notice
Very little information from hospital

We have never received s letter from the trial office

Steve really struggled when it was stopped , mentally he found it really difficult

Lorraine.

[ellenModerator]

Good morning Lorraine

Its Ellen here – I work with Debbie at Myeloma UK.

As far as we know, the trials office were going to issue letters to the consultants for them to pass on to patients so it may be an idea for your husband to get back to his consultant to query this.

I hope that is helpful but please do contact us if you have any questions. You can speak to Debbie or Jude or myself on the Myeloma Infoline on 0800 980 3332 or email directly to askthenurse@myeloma.org.uk

With best wishes

Ellen Watters
Myeloma Information Specialist

[Author]

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