Wednesday, January 9, 2013

Blastic Plasmacytoid Dendritic Cell Neoplasm Study

A friend told me that Dr. Frankel asked if this could be posted on any Blastic Plasmacytoid Dendritic Cell Neoplasm (BPDCN) blogs. In the end my BPDCN diagnosis was retracted and changed to Acute Undifferentiated Neoplasm, but I know there are BPDCN patients who find and read this blog. So ...

Blastic Plasmacytoid Dendritic Cell Neoplasm Study

Arthur Frankel, cell number: 254-718-0781,
emails are and

The protein drug, DTIL3 or SL-401 is a fusion molecule containing the catalytic and translocation domains of diphtheria toxin and human interleukin-3. The drug was administered to close to 50 AML and MDS patients in a phase 1 trial at doses of 1-12.5ug/kg IV over 15 minutes daily for between five and fourteen days. There was a 10% remission rate and toxicities were vascular leak syndrome, acute infusion reaction, and transient transaminasemia. In a pilot study, two patients with BPDCN who were refractory to allogeneic stem cell transplants received DTIL3 at 11.5ug/kg for three to five doses over ten days and both patients achieved complete remission. Both remissions are ongoing at 2+ and 3+ months. Side effects were limited to the same toxicity profile previously seen in the AML/MDS phase 1 study.

We are actively seeking several more BPDCN patients to confirm this activity.

Quick Update on Me

I'm going to my one-year post transplant appointment tomorrow! That's actually exactly a week shy of one year.

I'm still alive, and still in complete remission, though they'll verify that tomorrow with my last scheduled bone marrow biopsy.

I'm having a lot of skin issues. I have dry skin, rashes, and a weird red color under the skin on my lower legs and sometimes my arms. The red color consists of spots that are sometimes so close together that they make one blanket color. Yesterday, those covered more than half of my lower legs, but they're a lot better today ... first time in a month that they look significantly improved.

Those spots don't hurt or itch. They're just they're, and a good massage clears up about half the red spots, sometimes for a couple hours, but they always come back.

They started up the day of my last appointment (in November). In fact, I didn't know my calves looked like that until the nurse practictioner asked to see them. She and the doctor were a little taken aback, so they increased my steroid dose for a week or two.

They really haven't changed since then no matter what I've tried. I've tried massage, steroid cream, a couple different lotions, and even rubbing down with an exfoliation pad in the bathtub. I've also been pretty faithful about exercise--walking, running a bit, and calisthenics--for the last couple months because I haven't had bizarre problems preventing me from exercising. I even played soccer with the warehouse guys, including two of my sons, yesterday and almost scored the first goal--missed by no more than six inches on a long shot. Bad miss, we lost 1-0.

That's it. More after the appointment.

Quick Update on Jennifer Sample

Jennifer was a doctor, manager of the cancer pharmacy at Vanderbilt, who contracted leukemia and had a bone marrow transplant just four days after mine. Her first chemotherapy was given in the same room at Vanderbilt that I received my first chemo in, and she went in the room no more than a week after I left it.

Jennifer relapsed in the fall, a fact that hit very close to home for me. Her leukemia was "biphenotypic," which means that it had signs of both ALL (Acute Lymphocytic Leukemia) and AML (Acute Myeloid Leukemia). Mine was "undifferentiated" and it, too, had signs of both ALL and AML, puzzling the doctors about what approach to take in treating me.

In December, she went to be with the Lord. I had posted on this blog that I was confident God was going to let her recover, but it appears the recovery was not what I expected.

The Scriptures say that to depart and be with Christ is "far better" (Php. 1:23). Her sister Lauren has a beautiful, if somewhat heart-breaking, post about Jennifer here.

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