Joan wrote on 09/14/12 at 18:02:46:Hi Bob,
I'm confused about your post. Some of it doesn't seem right for systemic mastocytosis, which you appear to have. Why would hydroxyurea be recommended to reduce the number of mutated mast cells when you test negative for mutation? Have you already been diagnosed with another myeloproliferative disorder? I'm not saying you shouldn't take it, just wondering why it would be prescribed under the circumstances you described.
Zytol is a medicine for lowering uric acid, so I don't know why that would be a substitute for Accolate (similar to Singulair) which blocks leukotrienes.
Have you consulted a hematologist? You are not far from Palo Alto, where Dr. Jason Gotlib is a hematologist at Stanford University Medical Center. He is an expert on mast cell disease and other hematological diseases, including leukemias. Dr. Gotlib is also very familiar with a new medicine, midostaurin, which is currently in trials to treat both ASM and Mast Cell Leukemia. It has low side effects and is showing promise in both diseases. I posted his contact information under the doctors heading on this forum, if you want to contact him. Your doctor could call him, too, to see what his recommendation might be. He is in close contact with the SM experts in Boston, too, so can confer with them if needed.
If there's any possible way, I would encourage you to see Dr. Gotlib or another hematologist who is an expert in mast cell diseases for another opinion before you begin chemotherapy.
If you don't mind posting what else you find out, there are several of us with SM who are interested in possible new treatments.
Thanks for the reply. It's zyflo not zytol and I was told that is was a luekotreine inhibitor?
As to the hydroxyurea.... I think because I tested positive for c-kit 7 years ago and my tryptase has doubled, that my allergist does not believe the current negative results. So she wants to send a blood test to the mayo clinic. I always thought you needed a bone marrow test for c-kit but she claims that they can do it from a blood test?
I saw Dr. Gotlib about 7 years ago when he was first starting his drug study. He said he wanted to include me on it but he had only used it on two patients and both were too advanced with leukemia for positive results. My allergist then in Sacramento, Dr. Romary Halllet, and I decided that that my Masto was indolent and not agressive so I passed.
My hematologist in Portland, Dr. Soo, says that chemo would do no good without a positive c-kit. I have communicated with another hematologist up here, Dr. Mauro, who knows Dr. Gotlib. He is familiar with the chemo that Gotlib is working on and is willing to talk to me.
So..... I think I will not do this till I do this blood sample with Mayo and see the results because I manage this disease fairly well and only have to go to the ER about once or twice a year. Those times are not very fun..... But any long term chemo.....