Hi everyone,
I was diagnosed in feb2017, my light chains were very high and I had paraprotein of 9.7, extensive lessions on my spine and a few on my hip and ribs. I had 5 cycles of VTD which I responded to very well with few side effects, followed by a short break before an auto SCT in sept 2017.
I achieved a very good partial response by day 100 (Jan 2018) but had achieved a complete remission by may 2018. I have been taking 10mg Lenalidomide as maintenance from April 2018 (sourced from India with my consultants approval). Obviously I was really pleased with the complete remission status and have had a great summer feeling like things are improving and life is not so bad. However, at my clinic appointment this week I have been told my light chains are rising quite quickly (200 at the moment) and my para protein level is up to 3 (it was only 9 on diagnosis). My consultant seemed very negative about the whole situation and says it is very bad news to have had such a short remission, not good for my prognosis at all. I am really devastated about this news and need some advice! The suggestion is that I have more VTD (or something similar) to bring the levels down followed by a auto and allo SCT. I’m not at all sure about this as the risks seem so high but then I know it’s only being suggested as they don’t think my chances are great without it (the double SCT). I think my best option is to get on the CAR T therapy trail but I may not even be eligible, and I know I definitely wont be eligible if I have the allo SCT. However, I know that an allo SCT could be a good option if it works. It seems that most people who have had the allo SCT are in the younger (under 50) age category and maybe have not had failed auto SCT, but I’m not sure. I am 56 and have no kidney problems, heart problems or anything else really, although I do have non symptomatic Multiple Sclerosis.
Sorry this is such an outpouring but I think I am in shock still and don’t know where to turn to for help.
