I started relapsing biochemically in December 2012 (ie without symptoms), some 15 months after my stem cell transplant. Of course I was disappointed that it didnt last very long. Treatment options were discussed with my consultant who initally suggested Revlimid and Dexamethasone followed by another autologous stem cell transplant but I wanted to give Velcade another try so as to keep Revlimid as an option for later on. At the time of this consultation having Velcade again was not approved by NICE but after April it was added to the Cancer Drug Fund list as a treatment for relapsed patients. I asked for a second opinion on the best treatment options for me especially the value of a second stem cell transplant when the first one didnt last very long. It is reckoned that you only get half the time on a second transplant. In June still not having started any treatment even though my light chains were rising quite fast, I went to see Professor Gordon Cook at Leeds Hospital who suggested I have Velcade or Carfilzomib (the latter only an option on a trial) in combination with Dex and Cyclosphamide ( a triplet approach) for the maximum number of cycles (usually 8) followed by a second stem cell transplant and then possibly a donor transplant (a reduced intensity allograft). I discussed this with my own consultant who suggested that I might go on the Onyx Trial which was due to start soon. This would randomize me to Velcade or Carfilzomib (the newer drug) with Dexamethasone.
You will see from my post Trials and Tribulations and the Myeloma Trilogy about my frustration of waiting for the trial to open at my hospital and how I became symptomatic with Myleoma. I started treatment on 12 August having been randomized to Velcade and Dex. The annoyance was that I could have started Velcade at any time off trial but there was the 50/50 chance of getting Carfilzomib. So far I have had a great response to the treatment and my light chains were 50 at the end of the cycle with fairly minimal side effects.
I will update this page as and when.
Update April 2014
Well here I am on my 11th cycle of Velcade which since the 10th cycle I am now having once weekly at a low dose together with low dose delcade. My light chains went from 6000 at their peak to normal range by the end of the fifth cycle in November and since then as I have tolerated it so well the idea is of a low dose almost a maintenance dose to keep me stable perhaps for another few months and then I will have a second stem cell transplant. I have minimal side effects now although it was a bit heavy going the first few cycles with dizziness and problems from the steroids but so far no peripheral neuropathy and blood counts good.
Wendy's World 