MPNforum Magazine

T   Tomorrow MPNforum hits the newsstands but right now you can see Cliff Notes on ASH  by NINE of our top docs:  It’s all right here.

Crispino, Harrison, Mascarenhas, Mesa, Scherber, Silver, Spivak, Stein, Verstovsek

             
… Hydroxurea vs. Interferon

Finally…The moment of truth.

At the American Society of Hematology meeting in December, the results of three large clinical trials should help put an end to decades of argument. These trials compare the two most popular drugs for ET and PV: hydroxyurea (HU) and interferon (INF).

This Special Report on HU vs INF brings fresh input from patients and physicians to help us understand what’s at stake for us in these clinical  trials. 

These are the Special Report’s authors:

ET patient ELIZABETH GOLDSTEIN…When Pegasys failed.
ET patient BARBARA KURTZ … 30 year control of ET with hydroxyurea.
MF post-PV patient JEREMY SMITH…This can save your life. 

And the contributing specialists:

Drs. RUBEN MESA, JOHN MASCARENHAS, JERRY SPIVAK and BRADY STEIN weigh in with their combined heavy MPN experience from the clinics of the Mayo Clinic, Mt. Sinai, Johns Hopkins, and Northwestern. (Dr. HANS HASSELBALCH comments on Elizabeth Goldstein’s report. )  Their deep MPN knowledge as well as that of  many other specialists found in The Report’s Resource Section can help inform our discussions. There too you’ll find links to background scientific papers, clinical trial details and comparative pricing.

The full Special Report, “HU vs. Interferon, the Moment of Truth,”  is HERE.)

A pearl of rare and infinite value

You do not have to go up on the mountain to find it, or across the ocean to bring it back. The Word is very near,  in your mouth and in your heart that you may do it.

Dr. Archie McCallister had the great gift of bringing us peace and joy through the words in his mouth, words that touched our hearts, that made us smile and understand.  He was a good friend, a strong ally and a founder of MPNforum Magazine. He brought us hope and brought us together with his words and with his heart.

Dr. Arch, this physician, this writer of columns, creator of Pearls and Paste touched our minds and our hearts. He has passed from our world leaving a legacy of light and wit and love.

(Chris Harper remembers Arch here.)

From Oliver Sacks,  Gratitude… for Arch (here)

Ruben’s Raiders have already changed the way we look at MPNs.
Now they’re changing the way we treat MPNs.

Dr. Ruben Mesa demonstrating palpation technique

Quietly, in the past decade, the young scientists and physicians in Dr. Ruben Mesa’s unit at Mayo Clinic-Scottsdale have radically altered our view of myeloproliferative neoplasms.

By placing the MPN patient at the center of their work and converting patient reported assessments of their symptoms into  a scientifically validated instrument, a new view of MPN risk assessment has arisen.   As patients, without even realizing it, we now see ourselves differently because of their work.  Now they are taking direct aim at complementary and alternative therapies to relieve those symptoms.

(For the full story of this revolution that has already impacted our lives…and the radical new therapies on trial, click HERE.)

Jenny’s gone

Everything changes but when those changes sweep away someone we love  it takes a while to absorb the loss. In our MPN village we have lost more than our share of friends and family… but that never makes it easier to bear. Even so, when Jenny went down that cancer rabbit hole of weight loss, depression, pain and all the rest I was surprised at how badly.. (Read more here.)
 * Oil portrait of Jenny by Hilda Allred

Just updated… The List of  244 Patient-Recommended Hematologists –

The MPNclinics – 302 answers to 141 Patient questions… with Index

The MPN Genetics Network .. Report on CRISPR gene therapy

The Catalog of MPNforum Articles. ..

Subscribe to MPNforum