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e-Patient Perspective on ASH Conference Highlights

An e-Patient perspective on some Highlights of ASH Conference.

What’s the best way to pick up the most relevant blood cancer info from the American Society for Hematology (ASH) without attending the full mega-conference in Atlanta?  There are several “Highlights of ASH” conferences underway in North America this month.  I attended the one-day ASH 2012 Highlights conference sponsored by Dana Farber/Brigham & Women’s, Harvard Medical School and the Leukemia & Lymphoma Society this weekend.  This was a well-managed smooth, engaging conference for Oncologists, Hematologists, Fellows/Trainees and nurse professionals.  As a late registrant, I got a handwritten badge, promptly secured it to my lapel and joined a small group at a breakfast table.  I knew this conference targeted a knowledgeable physician audience.  But I was surprised that everyone assumed I was a doctor.  The courtesies are nice.  Ok, so I look the part.  It was later that I discovered my badge included the venerable ,MD following my name.  

I thought about greeting the doctors gave each other, Doctor, Doctor, Doctor, Doctor,  in the 1985 comedy movie Spies Like Us when after getting away with it Dan Aykroyd says to Chevy Chase, “we’re not doctors”.   I got away with it until the last session of the day when each was asked to raise your hand and pick the best multiple choice answer.  Needless to say, it was fun playing God for a few hours. 

This was a great educational opportunity, for this e-Patient.  And it provided the much-needed Continuing Medical Education (CME) credits for physicians.  I’m generally not afraid to speak up in the healthcare arena, but as I was a paying guest, I participated in listen-only mode, a courtesy I think e-Patients should embrace at these types of technical proceedings when you are clearly in over your head.  My note taking skills have dramatically improved recently as I’m constantly writing down new terms or abbreviations that come up during the presentations so I can study and explore later.

The faculty giving the presentations represent the home team for me. Each physician is associated with Dana Farber Cancer Institute and Brigham & Women’s Hospital where I’ve been treated exceptionally well for the past six years. Dr. Robert Soiffer Chief, Hematologic Malignancies launched the program at 8AM and kept the pace moving smoothly throughout the day; he is a strong advocate and driving force with the sponsors of this program.  With a little gentle arm twisting from my dear friend Lynne Graziano Morin of Leukemia & Lymphoma Society  one of the sponsors of this proceeding, who enlisted Dr. Soiffer’s help getting the Oral Parity Chemo bill passed on the last day of the 2012 Massachusetts legislative session, Dr. Soiffer gave a quick update on passage of this bill which will become even more important for blood cancer patients that are relying on pill form treatment options.  

He introduced Dr. Ann LaCasce, a bright oncologist who presented a list of current and latest Lymphoma treatment options including Brentuximab, Lenaldomide, ASCT (Transplant) commentary from European Study Groups and the latest chatter about  “Ibrutinib” for Lymphoma which made a Big Splash at ASH.  I was particularly interested in her comments about MYD88 mutations which for me is personal because this mutating gene is found in 90% of patients fighting my type of blood cancer, a rare lymphoplasmacytic lymphoma, Waldenstrom’s Macroglobulinemia.  The results of early clinical trials of Ibrutinib are encouraging with ”remarkable” response rates, much higher than anything described for this class of Lymphoma last year. 

The next physician Dr. Dan De Angelo is not only one of the brightest oncologist in Myeloma circles, I believe he gives the best bone marrow biopsy in the business.  What’s a best bone marrow biopsy? Fast!  Ok, it’s not as bad as getting run over by a truck, but if you must get run over, pleeeese make it fast.  I’m told that I have notoriously strong bones.  Unfortunately, many Myeloma patients have particularly weak, fragile bones as the bone marrow/blood system factory floor weakens. So I’m thankful for my problematic bones. Count blessings.   At DFCI several BMB teams have described my “bones of steel” when they have had repeated difficulty getting the biopsy sample which always includes a research donation for DFCI’s labs. I’m happy to give those very bright investigators and researcher my cells.   The corkscrew just won’t penetrate easily. 

About a year ago, the team was having a very hard time, as I tried to mentally zone out, I was aware of the frustration each of practitioners was having.  After the third practitioner’s attempt, about the 9th  for me that day,  Dr. Dan was summoned.  He quickly got it done.  Pain free? No, but fast.   As I couldn’t see his face and he could see mostly my butt, I asked him to come around front where I could see him. I wanted to be able to thank him as we might pass each other in the halls of DFCI or BWH.  He gave a great update on Acute Lymphoblastic Leukemia (ALL) and Chronic Myeloid Leukemia (CML) including exciting outcomes of Pediatric Regimens of Young Adults.   Interesting that “Young Adult” is someone who is less than 50 years of age, sadly I no longer qualify.  Dr. Dan celebrating on his birthday this day is also no longer a Young Adult too.  

The Mechanisms of Action of Inotuzumab which Dr. Dan described and dose options particularly for Refractory-Relapsed ALL patients is of keen interested to me, because I’m a repeatedly, refractory relapsing patient.   The only benefit of relapsing is the door to clinical trials seems to be wide open.   I think his comments about Bispecific T-cell Engager (BiTE) described as a possible “game changer” were gripping.  Blinatumomab MT103 is a BiTE specific Antibody, which sort of reminds me how Rituximab comes along, marks the potential malignant B cell that expresses the CD20 marker so that our Natural Killer (NK) cells then comes along and kills that B cell.   But in this case the agent is a T-cell (Thymus cell) rather than B-cell (Bone marrow cell).   I was eager to learn more about the current treatment options for CML, a nasty blood cancer, a Leukemia that killed a young college intern who worked for me 20 years ago, 1994 BG, Before Gleevec.  New CML agents in 2012 include Bosutinib, Omacetasine Mepesuccinate and Ponatinib; very techie but look them up if you’re interested.  These agents effect Major Cytogenic Remission and Complete Cytogenic Remission, terms which previously were not generally associated with this CML blood cancer.  Had these agents been available 20 years ago, my buddy Tony and thousands of others would likely have survived this previous killer.    During Dr. Dan’s closing remarks, he summarized by saying the field has exploded with new options.

Richard Stone, MD at the Adult Leukemia Program at DFCI described many ways to get Long Term, Disease Free Survival (LT DFT) from Acute Promyelocytic Leukemia and Acute Myeloid Leukemia. Look up APL 0406 Trial.  The only humorous tidbit that came up, no pun intended was clarification of the term ED, in this case Early Death.  It is clear that younger patients (under the age of 60) also a group into which I no longer fit have a much greater survivor outcome than older AML patients.  It appears that FLT3  pronounced “flit three” which is expressed in hematopoietic progenitor cells is being recognized as an AML target also worth exploring more under the name Quizartinib, very promising.  Dr. Stone’s comments about the effects of mTOR inhibitors, specifically Sirolimus +MEC Chemo were also of keen interest because I have been treated with an mTOR inhibitor, Everolimus (RAD001) a targeted therapy called mammalian target of rapamycin which affect the signals to regulate cell growth. 

David Steensma, MD FACP, Associate Professor at Harvard Medical and on the DFCI Adult Leukemia Program presentation on Myeloproliferative Neoplams and Myelodyplastic Syndrome included several patient presenting profiles that showed IPSS and IPSS-R scores and WPSS patient prognosis survival scores which included a interesting MDS mutation landscape and for me some understanding of risk modeling conducted in research labs.  When meeting one of the researchers focused on my blood cancer at DFCI, I asked him about the patient survival models he had produced, specifically asking, based on my info, how much time to I have?  Of course I knew he wouldn’t and couldn’t answer.     Just then my Dr. Ghobrial joined us.  I asked the question in another way. Hey Doc, I’m thinking about getting a second mortgage but I want to have it paid off by the time… Well,  what do you suggest, should I go for the 5 year or 10 year mortgage term?  Laughs.

Dr. Steensma presented Genetic Predictor of Response, honestly this was way over my head perhaps because he described a variety of molecular level predictors.  The take home messages are MDS mutation assays may improve risk stratification, Romiplostim, eltrombopag can improve platelet count (Yeah, I think the more we understand platelet counts and what affects them, the better. I’ve had a few “platelet crashes” so I’m told).    Dr. Steensma reiterated the Hematocrit (HCT) which is the ratio of red blood cells to your total volume of blood, an important measurement for blood cancer patients, the ideal is < 45% for men and < 42% for women, still the standard for PV (look up polycythemia vera).

Dr. Jacob Laubach, Multiple Myeloma Update presented a well defined Myeloma Treatment Algorithm, essentially pathways to follow in care of Multiple Myeloma patients. His talk included a description of Induction Therapy, a Phase I/II Study of MLN9708 and investigational oral proteasome inhibitor in combination with Lenalodomide and dexamethasone, again of keen interest to me because I had been treated with a proteasome inhibitor, bortezomib (Velcade).   Sadly there are many patients who suffer from the effects of these chemos that bring on Peripheral Neuropathy (PN) which for me has been one of the worst of many blood cancer symptoms.  PN often manifests as numbness, tingling, sharp pains like electrical shocks, hot and cold feeling, to a simple feeling of walking with a wrinkle in your sock, most of the time in one’s feet but often affects fingers too.   Dr. Jacob’s presentation included much study and research data surrounding Progression Free Survival (PFS) Time to Next Therapy (TNT), Overall Survival (OS) Overall Survival from relapse, Adverse Effects and Relapsed and Refractory Disease.  I think the highlight was his commentary on Daratumumab, a human (not mouse) CD38 monoclonal antibody with a broad spectrum killing activity.    A more specific Elotuzumab is a humanized (again, not mouse) monoclonal antibody designed to treat Multiple Myeloma.

Dr. Jennifer Brown, Director of the Chronic Lymphocytic Leukemia (CLL) center at DFCI gave perhaps the most complex of the presentations, but for an oncologist this might be the most useful information given this day.  Her updates included descriptions of somatic mutation and prognostic impact, updates on chemoimmunotherapy, aka CIT, use of Ofatumumab for upfront therapy for CLL patients.  She described 25 drivers in CLL, “genetic lesions” and cytogenetic abnormalities.    Really upper end of the bell curve stuff, at least for me.  I began to get comfortable when she described Novel Targeted Agents (my bet on my future) the BCL2 Family of inhibitors, BCR Pathway Inhibitors and some technology about which my oncologist has been researching for a long time, PI3K inhibitors and BTK inhibitors.  I’ve been trying to understand more about targeting kinases for a while; Dr. Brown’s presentation helped it sink in.  She reiterated that Ibrutinib (PCI-32765) the BTK inhibitor has emerged and 2012 is “the year of Ibrutinab”.   I wonder if this drug which give such positive results for relapsed refractory blood cancer patients could become the Gleevec of this period.  The response rates of patients studied are incredible, the PFS, OS and sustained inhibitation of proliferation are exciting.  

The final presentation of the day on Stem Cell Transplantation came from Dr. Corey Cutler. He described advances for older individuals with Acute Leukemia, Myelodysplastic Syndrome which I previously remember hearing described at preleukemia, essentially ineffective production of myeloid class of blood cells and Graft Versus Host Disease (GVHD) prevention.  I’m no expert on GVHD or any of this, but I well remember a good friend suffering with GVHD (before Gleevec was available), he didn’t survive.  I later learned that patients with GHVD survive.  During my many plasmapheresis (plasma exchange) to lower my IgM, GVHD patients were regularly being treated in the same facility.  We know so much more today about the GVHD prophylaxis that Dr. Cutler described.    Transplantation options are clearer today.  We have better Appropriate Patient Selection criteria, Pre-Transplantation Therapy, Timing of Transplantation and Post-Transplantation Therapy.   

Summary:  This is a brief overview of topics in which I have an interest and hopefully will help trigger some research you might want to do.  As most readers of this are “e-Patients”, I’m willing to risk providing my personal layman’s commentary, color and some comedy about what I saw and heard at this conference because e-Patients are more willing to dig deeper and do research that is more appropriate for their circumstances.    For the few, better informed physicians and other medical professionals that read this, I’d appreciate any commentary or corrections or amplification that might help my dear readers.  Thanks.

If you'd rather a .pdf copy of my comments click DFCI-LLS-ASH-Highlights 

Jack Whelan

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