When the diagnosis is certain, but the path is unclear

MYELOFIBROSIS : Just learned in the last few days that a close friend has been diagnosed with myelofibrosis, a serious bone marrow disorder that disrupts the body’s normal production of blood cells. The result is extensive scarring in bone marrow, leading to severe anemia, weakness, fatigue, and often, an enlarged spleen and liver.  The news was shocking to hear and a flashback to the time seven years ago when I was diagnosed with MCL (mantle cell lymphoma).

Given that fact that I did not know about myelofibrosis, nor that the disease is a type of chronic leukemia — a cancer that affects the blood-forming tissues in the body, I am on a web search for facts. Myelofibrosis can occur on its own (primary myelofibrosis) or it can occur as a result of another bone marrow disorder (secondary myelofibrosis), according to the Mayo Clinic.

An ‘orphan disease’ is one that has not been adopted by the pharmaceutical industry because it provides little financial incentive for the private sector to make and market new medications to treat or prevent it. An orphan disease may be a rare disease (according to US criteria, a disease that affects fewer than 200,000 people) or a common disease that has been ignored (such as tuberculosis, cholera, typhoid, and malaria) because it is far more prevalent in developing countries than in the developed world.

Needless to say, I have now exchanged multiple emails and made phone calls to potential sources of help and treatment for my friend, Randy W., who is about my same age, far too young to face the possible morbidity and the shortened mortality that I faced seven years ago before my August 2007 stem cell transplant from an unrelated donor.

Yes, my friend is in good care with a primary physician who made the diagnosis, but also, he has found that the physician is limited in knowledge about treatment for the disease.  Hence, I made a call on his behalf to City of Hope to arrange for a consultation that will happen shortly.  Lesson #1 :  Never wait for well-meaning medical systems to grant referrals to specialists, if that can be hastened.  By their nature, doctors study subjects literally to death; you just don’t want that outcome to prematurely become your own.

If interested in this topic further, you may want to read this deeply clinical blogger on the subject:
Perspectives on Hematology, Health Care, and The Profession of Pharmacy
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