[davidjParticipant]

I was diagnosed with lgG kappa multiple myeloma in June 2008. I had CDT treatment starting in August, followed by an autograft stem cell transplant early 2009. Since then I have been on the MUK5 Trial for Cyclophosphamide, Velcade and Dexamethasone (CVD) (v +Carfilzomib) in April 2013. Following my recent relapse, in early March 2015, I have started a new Phase 3 Study for Lenalidomide and Dexamethasone (Rd) v Daratumumab +Rd.

I would be interested to hear  of the experiences of any other patients who might be on this trial at UCLH or elsewhere, and in particular if there is anyone going up to London from Worthing or the south coast each week.

David

[janwParticipant]

Hi David,

I hope your new treatment works well. I’ve read such good reports on the Myeloma Beacon site about Daratumumab. My consultant in Birmingham is also quite excited about this new drug, which is supposed to have a good response rate and well tolerated, but only available in the UK on the clinical trial which you are undertaking. If you find any other myeloma patients undergoing this clinical trial, please keep us posted about your experiences. Fingers crossed, it’s a new drug which will provide myeloma patients with good periods of remission.

Regards Jan

[meganjaneParticipant]

Hi David,

My husband Phil is on the Pollux trial at Bart’s, he was randomised to the Daratumumab/Rev/Dex arm of the trial. Phil has just finished his second cycle. Things did not start well as he had a reaction to the first infusion of Daratumumab – a bronchospasm that resulted in difficulty breathing and also a rash. He had to stay the night in hospital for observation but he was told that it is common to have a reaction to the first Daratumumab as the body reacts to the monoclonal antibodies. Phil has not had any further reactions to it. The main side effect Phil has is tiredness, we are not sure which drug is causing this (maybe the Rev?) or if it is due to having to travel into the hospital twice a week, one day for blood tests and then the next day for treatment. Starting on cycle 3 the Daratumumab is once every two weeks instead of weekly so he will see if this helps with the tiredness.

The results from the first cycle were amazing, Phil’s paraproteins dropped by 60% from 15 to 6, we will find out the results of the 2nd cycle next week.

This is Phil’s 2nd line of treatment. He was diagnosed in May 2012 and had velcade/dox/dex and then a SCT over Christmas 2012.

Megan

[Author]

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