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Doctor insights on: Adult Onset Systemic Mastocytosis

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What do you know about systemic mastocytosis.?

What do you know about systemic mastocytosis.?

See below: Systemic mastocytosis, often termed systemic mast cell disease (smcd), is a heterogeneous clonal disorder of the mast cell and its precursor cells. It is now classified as a myeloproliferative neoplasm. It is characterized by mast cell infiltration of extracutaneous (not skin) organs. ...Read more

Dr. Brant Ward
43 doctors shared insights

Mastocytosis (Definition)

Mastocytosis is a condition in which the body produces too many mast cells. These overgrown mast cells can be confined to the skin (cutaneous mastocytosis), or can be located in the bone marrow and throughout the body (systemic mastocytosis). Symptoms of these disorders vary by location and type, but are thought to be caused by the release of chemical mediators like histamine ...Read more


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Help! I have aggressive systemic mastocytosis. What do I do?

Help! I have aggressive systemic mastocytosis. What do I do?

See a specialist!: Treatment of aggressive systemic mastocytosis can be extremely complex. If at all possible, you should see a specialist with experience treating this disorder. The mastocytosis society maintains a list of specialists, which can be viewed at http://tmsforacure.Org/patients/research_centers_1.Php. There are ongoing clinical trials for treatments that may help slow the progression of the disease. ...Read more

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Survival rate with systemic mastocytosis?

Survival rate with systemic mastocytosis?

Usually normal: Most people with a systemic mastocytosis have the 'indolent' variey, in which case their life span is the same as anyone else's (provided they get appropriate treatment for any anaphylactic reactions). There are very rare cases that we call 'aggressive.' in this case, it may shorten expected lifespan depending on just how 'aggressive' it is, but some of these may be amenable to treatment. ...Read more

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Is systemic mastocytosis life-threatening?

Usually not: Most people with systemic mastocytosis (sm) have a normal lifespan. Episodes of anaphylaxis with sm can be dangerous if not treated properly, so it's important to use Epipen (epinephrine) and lay flat with the feet elevated slightly. Rarely, sm can be aggressive or associated with a leukemia. In these cases, lifespan may be shortened, but the sm may respond to chemo. See a specialist in masto for more info. ...Read more

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What is the survival rate of patients with systemic mastocytosis?

What is the survival rate of patients with systemic mastocytosis?

Usually normal: Most people with a systemic mastocytosis have the 'indolent' variey, in which case their life span is the same as anyone else's (provided they get appropriate treatment for any anaphylactic reactions). There are very rare cases that we call 'aggressive.' in this case, it may shorten expected lifespan depending on just how 'aggressive' it is, but some of these may be amenable to treatment. ...Read more

Dr. Liawaty Ho Dr. Ho
2 doctors agreed:
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Is treatment necessary for systemic mastocytosis? I am taking gleevec (imatinib). What would happen if i stopped taking it?

Dr. Liawaty Ho Dr. Ho
2 doctors agreed:

D/w oncologist: There are indolent systemic masto, and agressive systemic mastocytosis (asm). Many times, with indolent disease- therapy will be aimed only to control the symptoms- itching, diarrhea etc. If you have an asm- then usually treatment is started. Asm can manifest from slowly progressive to rapid fatal disease.Organ involvement , transformation to other blood DX including acute leukemia can happen. ...Read more

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What is done for systemic mastocytosis?

What is done for  systemic mastocytosis?

Control of symptoms: After diagnosis, treatment is mostly focused on controlling symptoms. Flushing, itching, and (to some extent) GI symptoms are helped by antihistamines +/- leukotriene antagonsists (e.g. Monteleukast). More severe GI symptoms are treated with cromolyn. Cromolyn mixed with lotion can sometimes help severe itching. Epipen (epinephrine) is used for anaphylactic episodes. See a specialist in masto for more info. ...Read more

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Please please tell me everything about systemic mastocytosis.?

Please please tell me everything about systemic mastocytosis.?

Skin problem: This is a skin disorder. I recommend asking a dermatologist this question. ...Read more

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How much time does the average person with systemic mastocytosis live?

How much time does the average person with systemic mastocytosis live?

Widely variable: Overall about 60% are dead in ten years, 80% on 20 years but 10% are long-term survivors; there are no cures. A lot depends on the genetics of your lesion. Here's the best article http://bloodjournal.hematologylibrary.org/content/113/23/5727?sso-checked=1 ...Read more

Systemic (Definition)

A condition that involves the whole body as compared to a part of the body. For example diabetes ...Read more


Young Health (Definition)

Young Health ...Read more