We decided over the holidays to try to get a consultation with Dr. Ruben Mesa, hematologist/oncologist at Mayo Clinic Scottsdale. I really must thank my mother for making this happen. She prepared a concise yet thorough letter to Dr. Mesa explaining the changes in my symptoms and asked questions regarding my suitability for a clinical trial that we've been pursuing. All this before we had the BMB.
Dr. Mesa is one of the top experts in the world on Myeloproliferative Neoplasms (MPN), which includes Polycythemia Vera and Myelofibrosis.
Since Mayo Clinic Phoenix is hosting the Joyce Niblack Memorial Conference on Myeloproliferative Neoplasms this coming weekend, we wanted to schedule the consultation for the same trip. This conference is organized by the MPN Education Foundation and is rich in sharing the latest research in language patients and their loved ones can understand. This will be the 3rd such conference mom and I will have attended. I'll be reporting on the conference as it occurs.
So yesterday (Tuesday) I had the initial consult with Dr Mesa.
Unfortunately, the chronic leukemia has progressed from Polycythemia Vera (PV) to post-PV Myelofibrosis (MF). This means that my bone marrow has gone from producing too many red blood cells to producing not enough of any blood cells (eventually makes one transfusion-dependent).
Myelofibrosis (both primary and secondary), like the Polycythemia Vera, is a chronic leukemia -- meaning one can live for quite some time with appropriate medications and monitoring. (Acute leukemias are much more aggressive).
He needs more info to determine where my MF is in the DIPSS 4 stage range. It's likely somewhere in the middle -- not early and not severe. This is good news.
The 20+ pounds I've lost in the last 2 months is likely from increased calories that the cancer is burning. I'm still not to my Weight Watcher's goal weight, so no concern about it yet. I finally found an advantage to being chubby ~ it gives cancer more to chew on while the doctors prescribe more toxins to help you get better.
There are no medicines to cure secondary MF at this time; what is available can slow the progression of the disease and reduce the likelihood that it transforms to acute myeloid leukemia.
* I had lots of blood drawn that is on its way to Mayo Rochester for evaluation.
* I had a chest X-ray in part because he noticed my fingernails are "clubbing" which is a sign of pulmonary problems. It could also be a result of all the inflammation.
* I had an ultrasound on my big spleen and gut.
Dr. Mesa also wants to consult with a rheumatologist for the Behcet's and the other mystery inflammation (see my earlier posts). The inflammation is not related to the blood problems. While it may not be due to Behcet's, he wants the rheumatologist's opinions. The rheumatologist can't see me until next Tuesday morning, so I have to extend my trip.
Dr. Mesa also says that my "youth" is a big advantage (most are diagnosed around age 65).
I will know a lot more on Friday and will also learn a whole bunch about the state of MPNs and other patients' experiences at the symposium this weekend.