Vol. 11. No.5
Hope, doubt…and hematology
Doubt is not an official MPN symptom. And yet, few of us are spared its dark visitations spreading shadows over our plans and dreams, our everyday activities. Hope, on the other hand, is our MPN stock in trade. We hope for relief, for a good night’s sleep, recovery. We hope for more quality time, an end to itching, burning, cramping, hope for an extended future. Some doubt will never be erased. Some hope will be miraculously realized.
But as the stories, reviews, columns and poetry in this June issue reveal, the secret life of hematology remains largely a deep mystery. We cannot blindly turn ourselves over for treatment in the hope all MPN roads lead to the same diagnosis, the same treatment, the same outcomes.
To negotiate the MPN medical chaos, we need a trusted partner, a knowledgeable, caring hematologist. Despite astonishing discoveries, the myeloproliferative world is still largely unknown, its processes and pathways hidden from medical professionals as well as patients and caregivers. There are few pat answers. When high-level clinical oncologists and researchers strongly disagree…when standard diagnostics are unclear…when bone marrow biopsies are subject to varying interpretation…and when argument over the very definition of our diseases and treatments is played out in statistic-laden papers in learned journals, we are reminded how new and fragile MPN science is. We are reminded how much we need a trusted partner along this way.
Of one thing, there is little doubt. Ultimately, sooner rather than late, MPNs will be managed and then cured. Finally, fibrosis will be reversed. There has been an explosion of findings, and there are enough bright scientists working in well-equipped labs, with libraries of genetic data at their fingertips, for us to believe our hopes are well-founded.
To help us find our way to the emerging therapies, to monitor us as we start new treatment, we need a hematologist on our side. If you need to locate a hematologist, check The List. Many fellow MPN patients who made these recommendations are available to talk about their experiences. If you have a hematologist, please pass the good news along here. Contents: Enjoying every morning, Beatrice Larroque Rethinking bone marrow biopsies, Zhenya Senyak The newest MPN — controversy and confusion The list of hematologists, Ellen Jacquart, Ed. The catalog of MPNforum articles Poetry Corner: Out of the dark, Janice Creed News Brief: Powerhouse Bay Area Patient Conference Columns: Harvey Gould — Cockiness and MF Dr. Arch — On ascites and edema Dr. Michael Goldstein — On hearing Patricia Wagner — On affirmations Letters published this issue
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