Hi Vicki.
Just been catching up on the forum as it’s my DEX night! Though recently I’ve been managing to sleep on my Tuesday Dex nights not tonight though.
I find it strange your consultant seems to work in isolation. My consultant regularly has meetings, probably conference calls, to discuss her patients and treatment options with other local consultants and involved clinicians. When she alters my treatment she explains why and what to expect and this is usually with the agreement with a Professor at the Freeman Hospital in Newcastle.
Blood tests can tell a lot even if PPs are not detectable. All my results were down whilst on Revlimid they were all hammered and I was neutropenic for most of the 22 cycles I was on it.
At our last support group meeting we were told by the Professor that BMBs aren’t an effective tool to gauge myeloma activity due to irregular way myeloma is spread through your bone marrow! PPs aren’t the be all and end all of tests either. That’s why it’s important to take the blood test results as a whole and work from there. Ironically falling PPs can be a bad sign too in that the bone marrow is failing and can no longer produce PPs. Who knew that? Not me till a few months ago.
I still can’t understand why Colin went on to Bendamustine without being tried on Pomalidomide first. I was told that Bendamustine was an option for me but Pomalidomide came alone just in time. Still if Bendamustine does the trick Colin has Pom in the cupboard if needed later. Hopefully a long time later.
SCT has been ruled out again for me. Same reason given as last time my poor old battered bone marrow wouldn’t be up to the job of producing the required stem cells. I’ll have to wait till I see my consultant to get the full story.
Ok time for me to try for some sleep or is it movie time?
Every day is a gift.
Andy xxx
