The Dr. Does not say anything about the cost of the medications.

The side effects of meds. I always have to research them myself.

I totally agree Ellen that it’s a emotional roller coaster dealing with MM.plus the side effects of the big chemo you get before a SCT. It takes a long time too recuperate after a SCT.

The absolute necessity of advocating for yourself or getting someone who can.

Hi all - I am 68 [U.K. resident] and was diagnosed with MM stage three 6 years ago - had the stem cell treatment in year 1 - grueling preparation pre infusion and 5 month recovery period gave me 6 months only of post treatment "improvement".
5.5 years on put on Line 4 treatment which has improved my condition considerably.
I still suffer from re-occurring chest infections [pneumonia in year 2]and my mobility
isn't great - on a whole cocktail of meds...happy to share the details if anyone wants.
Plus a fortnightly visit to my local hospital for infusions including a 3 month infusion of Zometa - a calcium supplement.
I count myself so fortunate to have access to the best healthcare system in the world
The British NHS - I came close to moving to the Gulf Coast 10 years ago - My bank balance would have been decimated with the high cost of treatment in America.

Guess I am just lucky to still be here and self sufficient heading into year 7 but I still get down thinking of all of the activities and travelling I am unable to partake of.

Good luck to all of you out there

Andrew