Hairy Cell Leukemia (HCL) vs Systemic Mastocytosis

[AKJK406]

My mom (68 yrs) has been exhibiting all the symptoms of Hairy Cell Leukemia (HCL) - but the blood tests seem to point in another direction.  One doctor suspects she may have Systemic Mastocytosis.  Are there any definitive tests that will prove one way or another?

Someone mentioned that there is a Dr. Jeff Clark up in New England, who is a specialist in Hairy Cell Leukemia.  Does anyone have information on Dr. Clark?

Any help or suggestions will be greatly appreciated.

AKJK

[Connie 1]

From a quick google search, he's a Colon and Rectal Cancer specialist:
JEFF CLARK, MD
Massachusetts General Hospital
Dana Farber Cancer Institute
Assistant Professor in Medicine
Harvard Medical School
Boston, Massachusetts
There's more on him online:
http://www.google.com/search?hl=en&safe=off&q=%22Jeff+Clark%22+%22dana+farber%22

[panuge1028]

Hairy cell leukemia can usually be verified by Flow cytometry and/or a TRAP stain in a Hematology lab. Sometimes the "hairy cells" are rare, but a good laboratory can still pick it up on a slide or by the above mentioned methods. What are some symptoms of HCL? An enlarged spllen and pancytopenia are, I believe, the most common. Please let me know on this forum how your mom is.

[jimswoman]

New to this venue so a little late getting back to you.  I have hairy cell,and the most definitive way to confirm the diagnosis is with a bone marrow biopsy.  That can seem pretty dramatic, but when done by a doctor who knows what he is doing, it really is not that bad.  My hematology/oncologist is great and I would highly recommend him if he is taking new patients.  Dr. David Kutter at MGH in Boston.  I had symptoms for more than a year before I saw him, and he diagnosed me in 2 days.  HCL is pretty rare (less than 700 cases a year) and usually seen in men over 65, so not what they expected me to have being that I was a woman just turning 50!  I had a round of chemo, a drug called cladrabine (sp?) which I took through a pic line which ran 24 hrs a day for 7 days.  Not many side effects, I even worked every day while I was having it!  Let me know if you have more questions I may be able to help with.  It can be scary to hear this diagnosis, but most people can expect to live a pretty long life, even after the diagnosis,so I figure in the 10 yrs they said I had, they have plenty of time to come up with a cure!!

Best wishes to your mom as she goes through the process of figuring out what she has.