8-24-23

R saw Dr. Anna  Halpern at Fred Hutchinson Cancer Center (Hutch) this week. She specializes in Myeloproliferative Neoplasms (MPNs). “MPN” is the umbrella term for a specific group of blood cancers. There are seven types of MPNs. The primary three are Polycythemia Vera, Essential Thrombocythemia and Myelofibrosis – all of which are rare.

​R’s mother had Polycythemia Vera (incidence 1.5 per 100K people), and his father had Essential Thrombocythemia (incidence 1.5 per 100K people). R has Myelofibrosis (.04 per 100K people). One possible reason is exposure to the chemicals Toluene and Benzene, which are linked to MPNs. R moved from one Army base to another as a kid (including cities abroad). We may never know if one or more of the Army bases exposed R’s family to those chemicals, but it’s beyond suspicious that mother, father and son each wound up with one of the MPNs.

​Dr. Halpern agreed with the other hematologist we saw at Swedish/Providence and the transplant doctor we saw at Hutch. It’s not time for a stem cell transplant. R feels pretty well, all things considered, except for the enlarged spleen, which causes pressure in his abdomen, a reduced appetite, weight loss and a decline in energy. The bone marrow transplant (stem cells from the bone marrow instead of blood) is highly toxic and dangerous. Common side effects include:

• ​Graft-versus-host disease (when the donor’s stem cells attack the patient’s cells)
• Stem cell failure
• Organ damage
• Infections
• Cataracts
• Infertility
• New cancers
• Death

​There’s no way to know when R’s condition will worsen enough to warrant the transplant. Doctor Halpern said that based on R’s low level of scarred marrow and healthy blood cell counts (except for hemoglobin, which is high), it could be a while, maybe even years. See? Hope springs eternal. Let’s hope it’s years before the transplant becomes necessary.

R’s siblings have already submitted the Hutch DNA kits to see if one or both will be a good match when the time comes. There’s less chance of graft-vs-host disease if the donor and patient genders match, meaning the ideal match would be R’s brother.

​In the meantime, R will start a new medication–there are 2 possibilities (Jakafi and Interferon), and we haven’t decided which one is right for him yet. Both have pros and cons and address different aspects of the disease. We’ve got to do more research before R tells the doctor which route he wants to pursue.

​Thanks to everyone for their love and concern!