The MPN Research Foundation just released its roundtable on MPN Awareness on Facebook. You can access it on the foundation's FB page
here.
As I listened, I took a few notes that some of you might find helpful. But please watch the program yourself. The sound is a little wonky at times, but generally all the information is intelligible.
1. MPNs are cancers in the leukemia family. In my encounters with other ET patients, I hear too many patients say that their doctors do not consider ET a cancer. This should be a red flag for patients. Either the doctor is not up-to-date enough to know that in 2006, the World Health Organization reclassified MPNs as "cancers" rather than "disorders." Or the doctor objects to calling MPNs "cancers," which means he may not take your ET seriously.
2. ET and PV have less affect on life expectancy and quality than MF. Only a small number of patients with ET and PV will see their diseases progress to MF or to AML. However, ET and PV do require management and monitoring to get the best quality of life possible. Sometimes this involves oral or injectable chemotherapy. It's not a fun prospect, but oral and injectable chemos have fewer side effects than the infused chemos for acute cancer patients.
3. The cause of the mutation for MPNs is not known. A few people with ET have high platelet counts but do not show one of three mutations associated with ET (JAK2, CALR, or MPL). Dr. Srdan Verstovsek in the video notes that the mutation might be caused by something inside the body (perhaps a genetic trigger) or something outside the body (possibly an environmental cause). More research is needed.
4. The severity of an MPN ranges from the relatively benign to the life-threatening. Most of us with ET can live relatively normal lives, especially if we stay well-informed.
5. The American Society of Hematology can help patients find a hematologist in their area who is knowledgeable about MPNs
here. I was happy to see my hematologist on the list!
6. Info on MPNs has proliferated tremendously in the past 10 years. More research on effectiveness of treatment and disease progression has helped doctors better understand MPNs and care for patients. However, the biology of MPNs still needs more research, particularly to find out why some people with ET and PV will progress to MF or leukemia and others will not.
7. Patients should be part of their own care team. Doctors should be willing to answer questions about MPNs and to consider information that patients bring to them about their cancers.
8. MPN patients can help the MPN community. Sharing information on forums and blogs can help, just by helping patients feeling less alone. Because our disease is rare, it's easy to feel like a hypochondriac, so participating on forums reassures other patients that, no, they're not crazy.
9. MPN Foundation will roll out a patient registry to increase the amount of information available about patients with MPN. That registry is expected to go live sometime around the end of this year. (Watch this blog for more info!)
10. No two ET patients are the same. Disease progression is different for different people, even with the same diagnosis. Patients with ET will also respond differently to different treatments. Information from other patients is good, but when it comes to your treatment, your doctor should have the final say.
Be well!
