Hi All,
I’m new to the forum but having read the ongoing discussion about Dvd started by David I thought people may be interested in our experiences.
My husband, Ray, was diagnosed with myeloma in 2015. Ctd treatment did not get his paraprotein levels down low enough for a SCT but a couple of cycles of Velcade did the trick & he had the SCT in September 2016.
I was very concerned about the side effects from such aggressive treatment but, thanks to the brilliant medical team, he sailed through the SCT. The result was 4 years of remission.
His relapse coincided with the start of the covid pandemic (not good timing) & by June 2020 his paraprotein levels had risen to a level where further treatment had to be considered. By August his paraprotein levels were at 26 & his free light chains were 700. His haematology consultant at our local hospital recommended a second SCT but did not suggest any alternative. However, after much research we found out about the Dvd option.
After much soul searching, several telephone discussions with Sarah at Myeloma UK (who was brilliant at providing information & answering our many questions) & several with consultants at St James Hospital in Leeds we decided that Ray would go down the Dvd route.
Our final decision was based on Ray’s age – he was 74 at the time of relapse (fit & healthy apart from myeloma); the added risk if he contracted covid before his immune system recovered ; uncertainty around when the SCT would be available to him and the ways in which treatments were developing which, in turn, seemed to be influencing ideas about treating myeloma.
Ray has now completed 21 cycles of treatment. His paraprotein levels are so low as to be undetectable & his light chains are normal. There are side effects. During the early stages of treatment he had to have a transfusion of platelets. He has some nerve damage to his hands & feet but not to the extent that it prevents him doing everyday activities. There is some tiredness for a couple of days after treatment & he is slightly anaemic.
All-in-all, we think that the Dvd route was the best option for us.
