Should you consider an MPN clinical trial? In this webinar, Dr. Ruben Mesa will provide an overview of clinical trials—including the phases—and define common trial terms and types. Dr. Mesa will also share advice for trial participation and give an update on the latest advances in MPN research.
Dr. Ruben Mesa is an international expert in the research and care of patients with myeloproliferative neoplasms (MPNs). He serves as executive director of UT Health San Antonio MD Anderson Cancer Center in San Antonio, Texas.
Watch online on Wednesday, March 30, 2022 at 1 PM Eastern (10 AM PT, 12 PM CT) for a 30-minutepowerfulpatients.org/event/...
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hunter5582
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Thank you Hunter! I am considering going to MD Anderson to obtain an MPN Specialist. I like their online information better than Hopkins and Mayo. I noticed that they are acknowledging an inherited possibility and the others are not. My grandfather helped build the atomic bomb and the family including my father were exposed to radiation. I am looking forward to listening to Dr Rueben Mesa.
MD Anderson has an excellent reputation. I go to Johns Hopkins MPN Center and the NF Center. The care there is outstanding.
Dr. Mesa is an interesting and knowledgeable speaker. I will get a chance to hear him live on April 15 at the MPN Patient/Caregiver Event in Washington DC. Angela Fleischman and other prominent MPN researchers will be there too.
BrookTowsend375 Diagnosis Polycythemia Vera Jak2 positive just confirmed. No BMB needed will get venesections for 6 weeks and see where we are. Platelets 913, RBC 6.59, HGB 17.0 HCT 56.1. Lymph 15.8 Neutr 77.6 . I never would have sought treatment without help from you guys. Will also seek help from Mass Gen or Dana Farber. Should I do it right away? Just taking baby aspirin 1 a day nos. Any comments welcomed.
Glad to hear that you got a clear answer to your diagnosis. Now you can plan out your treatment going forward. You absolutely want to involve a MPN Specialist immediately.
Just in case, here are two lists. Mass Gen and Dana Farber are both on the list.
Starting with venesections + aspirin is standard for PV patients. At age>60, most MPN Specialists would recommend cytoreduction as well. Some will look more specifically at more than just age before recommending cytoreduction. This evaluation can involve looking at actual symptoms and your cooccurring medical conditions. While there can be clear benefits to the medication used for cytoreduction, there are also inherent risks.
The venesections will help to reduce the erythrocytosis by inducing iron deficiency. Note that this is not the same thing as anemia. The goal is for your body to still make enough, but not too many red blood cells. This is usually measured by using hematocrit (HCT), with the goal being HCT<42/43% for females, HCT<45% males. It is a bit of a balancing act to figure out how to achieve this goal for you. There can also be side effects from the ongoing iron deficiency. These include increasing thrombocytosis. You may see an increase in your platelet levels.
I ultimately found the side effects from chronic iron deficiency too bothersome, so I opted to initiate treatment with PEGylated Interferon. I started on Pegasys then switched to Besremi when it was FDA approved. This has worked much better for me than the venesections. My erythrocytosis and thrombocytosis are well controlled. The only side effects have been mild lymphopenia and occasional mild itchiness (which may or may not be IFN-related). Note - I proved hydroxyurea-intolerant in the past, experiencing toxicity even at very low doses.
Going on the IFNs has proven to be the best approach for me. I am sure you will find the right approach to managing PV as well.
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platelets are in normal range
CHANGE OF DATE for the webinar for MPN patients relating to government guidance on COVID-19
