Dear Mavis,
I had CDT the first time round (cyclophosphamide, dexamethasone and thalidomide)I reacted badly to the thalidomide – throat, mouth and lips went numb and I was covered in a rash – so that was stopped. The rest made me feel dreadful, extremely weak so that it was a struggle to look after myself. I'm a widow and live on my own so being able to look after myself is very important.
My pps were extremely high when I was diagnosed: 76. CDT brought them down to 16 but that lasted just a few months. They were in the 40's when I was put on Velcade which brought them down to 3, a much better result. They've been low for a year but have suddenly shot up to 28, which is why we are discussing treatment. However, my consultant did say that he would consider everything as a whole, i.e. the fact that I feel quite well, before he puts me back on treatment.
Hope this helps and that you can put off having treatment for as long as possible.
Jen