Wednesday, April 20, 2011

Another example of why I love my doctor

A fellow traveller -- well, actually, we're going to call this guy a warrior...BB are his initials, and he's not related to my marvelous doctor -- has been through hell, and today was a neat example of why I love BB (both of them, really, but the doctor for purposes of this story).

This is gonna get confusing so we'll call the patient BrB and the doctor BB.

You have read a lot in my blog about low-risk versus high-risk disease.  About 85% of patients, according to the 70- and 80-gene studies at UAMS that are by far the most advanced in the world for this disease, are classified as low-risk disease and they are eligible for the TT4 protocol for low-risk disease.  This is what I underwent.  I had some bad characteristics within this 85%, such as cytogeneic abnormalities and a "proliferation" subtype that meant my disease was more aggressive than some, but I was still low risk.  And BB believe he is curing about 65% of newly-diagnosed low-risk disease patients through the TT4 protocol.

The results and prognosis for high-risk candidates are considerably more dire.  The treatment protocol is more aggressive even than the already-aggressive TT4 protocol (I believe there are five or six additional chemo agents used, on top of the four used in TT4 -- and note this excludes "pseudo" chemo like thalidomide, Velcade, etc.  - I'm talking real, old-school mustard gas chemo).  And cure / survival rates are much lower.  Only about 20%, if memory serves, are cured, and most people live only 3-4 years with high risk disease.

My wife and I met BrB and his lovely wife as we were in the middle of therapy.  They are delightful, warm people and it pains us to know all that BrB has had to go through.  On top of it being high-risk, he is also non-secretory, which means his disease does not show up in his blood (M-spike) or his urine (Bence Jones Protein).  It is only through PET Scans and bone marrow biopsies that it is revealed.

BrB enjoyed one year of remission after this brutal regimen, and about six months ago it came back.  I'll spare the details, but he's been through extremely aggressive chemo, has had to deal with horrible respiratory complications, hospital stays for that where he's contracted opportunistic infections, etc.  Throughout this, his lovely wife J has been so supportive and tried to keep his spirits up.  BrB, understandably, has had some real challenges but he manages to soldier on with dignity even if his spirit and body is exhausted.

Several days ago, BB demanded to know where some test results were.  They hadn't been done.  BB went ballistic and the tests were done.  And then he saw that there was some residual myeloma.  BrB was saddened, obviously, until -- and this is where it gets cool almost like a scene in a movie, BB called the lab.

"How close are we with the killer cells?"

"One week."

"I want BrB to be the first to receive them."

In addition to the existing Total Therapy regiments, BB and his colleagues have been working on killer cells for myeloma.  This has been done successfully in leukemia in London, and it has been demonstrated to be highly effective in myeloma-stricken mice at UAMS. 

BrB will be put on Pomalidomide (next-gen Revlimid) to keep the myeloma in check until May, when he can get enrolled as the second (there's one other guy, turns out) patient in this trial that has shown tremendous promise.

My thoughts and prayers go out to BrB and J, both for their own individual sakes and as hopefully an example of another important breakthrough driven by BB's steadfast desire to cure this disease.

8 comments:

  1. Nick, thanks for posting this information. I hope it works out well for your friend. This could give a lot of other myeloma patients hope.

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  2. From reading your blog I can see that BB is a warrior for his patients, and that is truly wonderful. Hearing about these 'killer cells' is indeed hopeful.

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  3. Nick, I join you in praying and wishing the very best for J & B. They are indeed very special people.

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  4. Very exciting news since my husband has high-risk. And can't wait to hear how good B (and J) does with this!!!

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  5. And BB of course! The one you will always pick to be in your fox hole!

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  6. Awaiting word of good news!

    It's time for something good to happen in this Myeloma World!

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