How Can I Beat the Itchies? contributed by Paul Jaeger I was suffering from itching (pruritis) almost 10 years before my Polycythemia Vera was diagnosed. It’s the worst symptom my disease/condition has brought so far, although the doctor promises death at some point in my future. I had to give her $150 to tell me […]
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 […]
From our www.mpdsupport.org archives from 1995, pearls of wisdom by the late Dr. Gilbert Dear Members: For your information re bone and joint pains in MPD. 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 […]
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 […]
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. […]
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
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 rare and complex, incidence 1 or 2 out of 100,000 (of course, we know that). PV is predominately found in men, while ET […]
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. Richard Silver delivers a stellar presentation – On the “Curability” of Polycythemia Vera with Interferon. Presented February 2013, Mayo Clinic, Scottsdale, Arizona. Richard Silver PV
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 […]
Definition of Myeloproliferative Neoplasm
by David Wallace Fedratinib by Celgene, offered on Expanded Access Program … [Read More...]
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