New Treatment and Research 2016

Having a rare cancer means, the possibility of living out your life, with no cure.  Sometimes this is very overwhelming for me; I have periods of despair and sadness.  If I put my mind to good thoughts, and the prospect of new research and clinical trials, I leave the sadness and apprehension behind, and focus on finding one for me!

I am learning so much about this disorder, and the ways in which it has developed.  For me, they have discovered one genetic defect, MTHFR c677t.  I am in the process of having more genetic testing done, because it has been discovered that there are many genetic abnormalities that are associated with myeloproliferative disorders.  In order to receive the best treatment option available, it is necessary to obtain more genetic testing.  This is in part due to the function of the genes involved; for example, MTHFR involves the process of homocysteine. This is caused by a reduction of folate and vitamins B, in the blood.  As with any form of deficit, if one part of the body is out of whack, the whole body goes with it~

I am sharing the following links to assist people in understanding the process of myeloproliferative disorders, and their treatment options and advancement.  One of my favorite websites is called, Patient Power.  What I have learned, you have to be an advocate for yourself, as a patient, especially when dealing with a rare disease.  Not only to keep yourself informed, but for your doctor as well.  Let's face it, doctors are fallible, including mine.  In fact, even though I do have a fondness for my hematologist, he has a very narrow understanding of this disorder.  It took nearly one year to reach a final diagnosis and in that time, he did not do all the necessary work-ups, because my disease is so rare, how could I have it??  I suggest anyone with any type of cancer, to look into Patient Power, it has helped me tremendously!
http://www.patientpower.info

For MPN's specifically, the newest updates are found here:
http://www.patientpower.info/video/ash-coverage-mpn-research-updates-from-a-panel-of-experts