[Wordy Diva]

MGUS to multiple myeloma in 3 months

by Wordy Diva on Mon Apr 10, 2017 1:05 pm

Hello all from Hal (now multiple myeloma) and Terry (wife and advocate) in Michigan, USA!

Hal's journey so far has been frustrating because his symptoms did not (and still don't) fit neatly into the diagnostic boxes: multiple lytic lesions in spine, but no renal, calcium, or anemia issues; bone marrow 3%; no M-spike.

Before all this started, he was a healthy and active retired 75 year old. Lytic lesions in his spine were discovered in a routine CT scan for something else in January, 2017. He was referred to the hematologist-oncologist and has been tested in ways we never imagined since then. The oncologist diagnosed him with MGUS in January, 2017, with a "wait and see" approach. We asked for a needle biopsy of the lesions and it showed that there were lots of plasma cells in the largest lytic lesion in spine, so she altered his diagnosis to smoldering in February 2017. Then in late March, we got the results of a PET scan that lit up like a Christmas tree (both iliac crests, right femur, both shoulders, and another previously-undetected lesion in the spine). He is now formally diagnosed with multiple myeloma. sigh.

He has had 9 (daily) radiation treatments for the spine; 5 more to go, and they are starting radiation on the femur and shoulder for these last 5 zaps as well. Radiation should end Friday of this week. So far, Hal's side effects have been manageable, and his spirits are good. Tiredness the first week, moving to exhaustion this week. He had a 3 and 3/4 hour nap this afternoon.

Current plan is to start Revlimid and dexamethasone the following Monday (April 17). We are, however, going today to see a myeloma specialist for a second opinion at the Karmanos Cancer Center in Detroit to get confirmation before we launch into chemo.

I am surprised how fast this cancer has become so central to our lives. We plan everything around naps and doctor appointments.

[Ron Harvot]

Re: MGUS to multiple myeloma in 3 months

by Ron Harvot on Tue May 30, 2017 1:27 pm

Terri,

Welcome to the Beacon.

Seeing a myeloma specialist is probably the best thing any patient can do. I would not be sur­prised that your husband is started on a triplet such as Velcade, Revlimid, and dexa­metha­sone. (VRD). That, or substituting Kyprolis for Velcade, appears to be the most prescribed induction (beginning) type treatments. Both Velcade and Kyprolis are proteasome inhibitors that are powerful anti-myeloma agents. When combined with Revlimid and dex, they are even more efficient at killing myeloma cells. All myeloma drugs have potential side effects, but the triplets are generally tolerated fairly well by most patients.