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.
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Do you know where Dr barlogie is practicing
ReplyDeleteI've heard rumors, Jeff, but I don't know yet. I'll be visiting with Dr. Barlogie later in June and will report what I learn.
ReplyDeleteThanks for the update Nick. How were the relapses detected? I get more an more nervous as time passes as I still have unresolved lesions too.
ReplyDeleteJody -
ReplyDeleteM spikes re-occured in both patients (small ones, in the 0.2 to 0.4 range). One patient shared his chart with me, and the marrow was still clean and tested negative under MRD. The pathologist's note was something along the lines of "despite qualifying for MRD negativity, patient has experienced a recurrence of the disease."
Thanks Nick. This really gives me the willies, I am hypo-secretory and never had an M-spike. Going to have to keep an eagle eye on my light chains. Hopefully we will hear something concrete on Dr. B soon, it's going to be a tough decision. He seemed to have things nearly finalized when I saw him in April, wonder when an official announcement will come.
ReplyDeleteNick, we just attended an IMF Regional Workshop in Charlotte, NC where one of the speakers was Dr. Saad Z. Usmani, now at the Levine Cancer Institute there. Dr. Barlogie was his mentor, as you probably know, and he stated that Barlogie, though officially "retiring", is headed to Mr. Sinai in NY to continue working with/following patients. To many, that is great news I'm sure!
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