[DDstrong]

Re: Diagnosed with multiple myeloma at the young age of 31

by DDstrong on Sat Jul 21, 2018 2:38 am

Hi there,

I was also diagnosed at age 32 (last December). It's been a long 7-8 months to say the least.

I had hyperviscosity, acute kidney failure, anemia, and extramedullary plasmocytomas in my abdomen, as well as IgG levels of approx 6,000 mg/dL (at its highest, it was around 8,500) and kappa light chains at 2,700 mg/L.

3 months of Velcade, Revlimid, and dexamethasone (VRd) didn't work for me (though the kappa levels came down to 1,400), at which point we tried a regimen called CHOP (used in lymphoma), without the vincristine, alternated with VRd. When this wasn't effective either, I went to a specialist at Froedtert in Wisconsin.

We first tried a round of salvage therapy, KDP-PACE. That only brought the IgG levels down from 6,300 to about 5,600. The doctor decided that it was ineffective with such an aggressive regimen, and for a month I was on Kyprolis, Pomalyst and cyclophosphamide (with dex). This too was quite aggressive and really knocked me for a loop. IgG levels came down to about 5,000, and kappa at approx 1,000.

At this point, we decided that this was close enough to a partial response and that I couldn't continue to be bombarded by so many drugs. I did the stem cell transplant in early June; it was rough for 3 weeks. I'm now recovering quite well, feeling good, finally off all medication, and waiting to see the status in the next round of scans and tests.