Hi all. Just thought I would give you an update on my progress. As most of you know my SCT failed miserably and I had to be taken off the trial. I was put on maintenance therapy because despite the failure my protein levels were undetectable so it had done some good.
I am now on Daratumumtab. Dexamethasone. Lenolidomide.
My Neuropathy is improving slowly.
After I was taken off the trial I did start feeling abandoned. Cancelled appointments. Delayed treatments . Changed times and days. Was told I had gone from been in a group of a few to now been in a group of a thousand or more so such expect less. That did not help and sent me into a very down few days. After being on the forum I decided to treat myself and help myself more if the experts had given up on me. I started taking vitamins. Got some physio sorted. Took up more exercise. Did more housework. I am now starting to feel more like myself or at least a new version of me. My hair has even started to grow back. Still can't walk far. Can't stand for too long and am still on Morphine. Gabapentin. Paracetamol for back pain but this is probably the arthritis rather than MM.
Have other people felt really down after coming off a trial. The trial team kept me updated. Informed me every step of the way. Now I don't know from one day to the next what is happening.
