Answer Summary
Members shared deeply personal experiences navigating multiple myeloma treatment, with many expressing gratitude for strong medical teams and... Read more
It's unfortunate I have an aggressive myeloma and have tried 9 different combinations of treatment over the past 8 years.
I underwent CAR T Cell therapy March 2023 and achieved remission up until now. I will be looking at a bispecific treatment soon. I just keep fighting back, in Jesus' name, until it's time to go.
If it weren't for my hope in God, I think I would've died from the sadness and struggle a long time ago.
IMF has a great book that explains your blood lab results. And with myeloma you really need to understand your blood lab results and follow them carefully. The blood lab results is like a map as to where in the heck you are on this crazy journey. Or I suppose you could forgo everything and just live one day to the next enjoying the trip. Suppose the results might be about the same.
So far I have been blessed with a great MM Specialist team at Emory and my local oncologist who have provided excellent guidance in changing my meds when necessary. I was diagnosed almost seven years ago and have experienced all the peaks and valleys of living with MM but I continue to enjoy my life.
Truer words were never posted my friend!
Somewhat frustrated - imagine how many people could be helped if the mark-up of the drugs we take was fair. Thalidomide made in the 60s cost pennies per capsule, today a 21 day regimen (21 capsules) costs many thousands of dollars. Medicare or insurance pays for it so we don't seem to mind. Something is very wrong!