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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Human Embryonic Stem Cells Derived by Somatic Cell Nuclear Transfer

Human Embryonic Stem Cells Derived by Somatic Cell Nuclear Transfer }:{ My August 2007 stem cell transplant (SCT) was done with adult cells from an unrelated donor.  While the procedure is fraught with risks, mortality, and morbidity factors for the recipient, an SCT or the BMT (bone marrow) equivalent is virtually harmless to the adult donor.
 }:{  alt@search  }:{  alt@story   }:{ 

Because I was the recipient of life-saving stem cells 5.8 years ago, I am naturally more than a casual observer of the science.  But everyone who seriously follows this story line and these tweets, realizes that society and medicine at large both face certain ethical questions regarding transplants using embryonic cells.  While the adult cells issue is largely resolved, I am not sure that this “breakthrough” cloning of embryonic cells solves the larger ethical issue, but it does bring the science to an important threshold, thanks to the work of:

Shoukhrat Mitalipov is an associate scientist in the Division of Reproductive & Developmental Sciences of ONPRC, Oregon Stem Cell Center and Departments of Obstetrics & Gynecology and Molecular & Medical Genetics, and co-director of the ART/ESC core at the Center. He earned his Ph.D. degree in Developmental & Stem Cell Biology at the Research Center for Medical Genetics in Moscow, Russia. He came to Utah State University in 1995 to conduct his postdoctoral research in stem cell and developmental biology. Dr. Mitalipov moved to the Oregon center in 1998.

In summary, the research by Dr. Mitalipov deals with totipotent and pluripotent stem cells that are important as a unique research tool that allows investigation of the mechanisms regulating early primate development and differentiation. Human stem cells also provide the far-reaching foundation for the field of regenerative medicine and offer hope for the treatment of a wide range of clinical conditions that can be attributed to the loss or malfunction of specific cell types. Translational research in the clinically relevant nonhuman primate model is highly desirable to evaluate the safety, feasibility and efficacy of cell-based therapies. The basic research conducted in the Mitalipov lab provides new insights into the generation, maintenance and developmental potential of primate totipotent and pluripotent stem cells.

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6 years since our SCT at COH

This coming Friday, May 10, will mark our return to City of Hope, Durate, CA, for the sixth reunion of SCT (stem cell transplant) patients like me. Not surprising is the fact that this is actually the 37th such reunion at the internationally-renowned cancer treatment and research center.

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When you change the way you look at things, the things you look at change

6 years since our SCT at COH