Relapses in Total Therapy give me the willies

With my return trip to Little Rock coming up in three weeks, I’ve been thinking a lot about what to do and upon the continued need for follow-up.  And I’ve heard this week from two people in my cohort (Total Therapy 4 Lite with standard/low risk disease) who had sustained remissions of several years and recently lost them.

This is not good news, obviously.

In both cases, the patients had unresolved formerly active lesions in their spines which were the only things that troubled Barlogie.  Both had tested negative for MRD in bone marrow, which speaks to the fallibility of that test.  MM is patchy in the marrow — what’s clean in one place isn’t clean in another.

So I want those lesions to go away, basically.  I’m trying to work the logistics so that my lesions (if they are still there) can be punctured with needles to assess the marrow in those particular spots.  Not sure if they are accessible or not.

Continued resolution would be a good sign, but I’m afraid until they are all gone I won’t be able to rest easy.  One of the patients who just lost remission had only a single remaining non-active lesion, clean blood and marrow for five years…and is now being treated with Carfilzomib.

The projected cure fraction from Total Therapy 3 — which is essentially the *heavy* version of Total Therapy 4 — has been adjusted down to 50%.  That probably means about 60% of low risk patients.  I will be a lower figure than that for Total Therapy 4.  50 percent?  40 percent?  30 percent?

I have to hope I’m one of the lucky ones.

This means that ongoing imaging studies are of vital importance to this disease.  As a patient, demand them.