I was declared officially relapsed from Velcade on January 9th and put onto Rev and Dex. I was then contacted that afternoon to tell me not to start the treatment because of the possibility of inclusion in a trial for Carfilzomib + Rev + Dex.
We met with my consultant the next day and she went through the ins and outs of the trial after which I wanted in. I was given a 24 hour urine test to be completed by Thursday 12th because the trial insists that I must have myeloma (only 0.5) present in my urine to qualify (plus a shed load of other qualifications but my consultant said I should be okay with them). If/when the urine shows positive then I will undergo a battery of tests (full body scan/Bloods/ECG etc., etc..
My urine results came back yesterday showing a blank. Although there is protein in my blood and my kappa light chains are shooting up it must show in my urine before I can be considered for the trial. 😐
Fortunately my consultant had a plan and had supplied me with 2 3-litre urine test bottles. She phoned me yesterday and said we would try again in 2/3 weeks… 3 if I can hold out until then – the longer the better to give the myeloma the chance to show in my urine.
So a 3 week wait it is then. I was given my Rev & Dex and anti-biotics but I have to hold off until I am given the green-light for the trial. The thing is even if I qualify and all the tests say yes it is still a randomised trial… 50/50. I have started getting rib pain (especially if I bend, twist or stretch) and everything else is rising… so the sooner I start treatment the better… be it Rev & Dex or the trio combo.
I want the latter… badly – but I am going to have to wait and see.
Complicated? Typical? Oh yes indeedy.:-)
Dai.
