International MPN News, Science & Opinion

Hope and doubt — June, 2012

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 erasedSome 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 disagreewhen standard diagnostics are unclearwhen bone marrow biopsies are subject to varying interpretationand 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 GouldCockiness and MF Dr. Arch On ascites and edema Dr. Michael Goldstein — On hearing Patricia Wagner — On affirmations Letters published this issue

Special on Subscription:  It’s Free!

We need you to subscribe to MPNforum MagazineIt’s fast, it’s free, and it helps us more than you’d believe. Plus it’s easy. The SUBSCRIBE box is at the top, right of every MPNforum page We’re swamped. All of us working on MPNforum are dealing with our own MPNs.  And struggling to keep it together in these months of fast-breaking news of revolutionary genetic breakthroughs. Taking time to post individual notices of publication to thousands of MPN patients and caregivers …and post to sites… takes days.   But it takes only seconds to send a notice to our subscribers. Some of you have helped with donations, Some of you have helped with volunteer time. Please, help us out by subscribing.   And you don’t even have to change your routine since you’re reading the Forum right now anyhow. (The Subscribe box is over to the right, way up top.)  Many thanks,   Tell your story, express yourself, share your experience in your MPN magazine. You can add your comments to MPNForum articles or write your own story .  We can help. 

Open a discussion with your own Letter to the Editor.

Contact: ourMPNforum@gmail.com

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s

%d bloggers like this: