Well You Don’t Look Sick

A Phrase Commonly Heard by MPN Patients by David Wallace Isn’t it amazing how well we look?  In a group gathering of MPN patients you will see very few wheelchairs, walkers, canes, portable oxygen tanks or other medical devices required for daily living.  Behind the facade of  “well-appearing” individuals, we silently suffer from a long […]

MPN Clinical Trials Moving Forward

Two MPN Clinical Trials Progress – Phase 3 Polycythemia Vera Study and Phase 2 Myelofibrosis Study There are dozens of clinical trials at various stages of progression for Polycythemia Vera, Essential Thrombocythemia and Myelofibrosis.  Some are in the recruiting stage, others still active and the balance have been completed.  Both of these trials will be […]

Bone & Joint Pain in MPN Patients Explained

Pearls of wisdom (1995) by the late Dr. Gilbert Dear Members:  For your information re bone and joint pains in MPN.  Several of you have mentioned that you suffer from bone and/or joint pains – sometimes attributed to arthritis.  I have seen a number of patients who have this complaint and it has been related […]

Jane Murray’s MPN Story

A Moving Video Account of Jane’s Pre-diagnosis MPN Medical Mishaps After listening to Jane’s video presentation, I was deeply moved by her story and asked if I could post it, along with her comments from an online forum.  Thankfully, she accepted the post invite graciously and without hesitation.  She presented at the MPN Awareness day on […]

Thank you for a most successful launch and join the PV Reporter mailing list!

For those who have yet to sign up for the PV Reporter mailing list, please consider doing so.  I want to share our First Newsletter Update. Here is the Newsletter in it’s entirety:     Successful Launch! Introduction: PV Reporter was created by David Wallace, an aspiring web designer, publisher, writer, and chief bottle washer. […]

JAK2 p.V617F detection and allele burden measurement in peripheral blood and bone marrow aspirates in patients with myeloproliferative neoplasms

Key points The sensitivity and specificity of detecting the JAK2 p.V617F mutation in peripheral blood are both 100% compared to bone marrow. The JAK2 p.V617F allele burden measured in peripheral blood is equivalent to that in bone marrow aspirate (R2=0.991; P<0.0001). See the Abstract Here

Living With MPN

Interview about Living with MPN – click here Some key take away points: See an MPN Specialist and have him work with your local doctor on an appropriate treatment plan. MPNs are uncommon and complex, incidence 1 or 2 out of 100,000 in 2019, we know that number is exponentially higher) PV is predominately found […]

Understanding Your CBC

Understanding Your CBC by Dr Sinclair This presentation breaks down the CBC (Complete Blood Count) into bite size morsels that are easy to digest and focused on MPNs. Now what do you have to learn? The Complete Blood Count and Associated Tests This presentation provides more detailed explanation of terms and is more generic in […]

Dr Silver on the Curability of Polycythemia Vera with Interferon

Dr. Richard Silver delivers a stellar presentation – On the “Curability” of Polycythemia Vera with Interferon. Presented February 2013, Mayo Clinic, Scottsdale, Arizona.   Richard Silver PV

Blood Centers That Polycythemia Vera Patients Can Use

Where to go for Therapeutic Phlebotomy As a Polycythemia Vera patient, you can not give blood to the Red Cross.  You can go to blood centers where they will accept blood from a PV patient for what is referred to as “therapeutic phlebotomy”.  You will need to check with the respective blood center in your […]

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