Hi minimouse,
Thanks for your post.
Just to clarify, he had a cycle of Revlimid and his FLC's came down to 250. On holiday he had the second cycle, and then picked up a pneumonia so the cycle was paused. It was restarted, but the infection resurfaced back in UK, so Revlimid was paused again. The Revlimid was then started again (cycle 3) but it was no longer working so he was switched to Dex, Velc and Thalidomide.
I know what you mean – my dad looked and felt very well even as his FLC's were rising into the several thousands. In October he went on a mini-break and was full of energy and enthusiasm…he got back to find out the FLC's were on the up and up. He looks and feels a lot worse since treatment began!
I know the doctors worry about his kidneys as his FLC's go up, but so far they appear to be OK.
You're right – nursing staff don't have time to monitor nutrition, but I think he is now on Complan/related protein drinks, so I hope that helps. It's a real struggle to get him to eat anything, no wonder he feels weak and dizzy!