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Doctor insights on: Treatments For Systemic Mastocytosis

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Dr. Brant Ward
42 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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Can Sandostatin (octreotide) LAR be used as treatment of elevated 5-HIAA in aggressive type of systemic mastocytosis? Thank you. (repeated question)

Possibly: Possibly for symtomatic management. However, malignant GI diseases can be mistaken for systemic mastocytosis. Whereas 5HIAA is elevated in carcinoid syndrome, it usually is normal in SM. Aggressive systemic mastocytosis usually requires chemotherapy or imatinib. ...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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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

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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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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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In systemic mastocytosis, what is the difference between whole blood and peripheral blood tryptase test? Thank you.

In systemic mastocytosis, what is the difference between whole blood and peripheral blood tryptase test? Thank you.

Same test: Please forgive me. From what you've listed -- "light dengue symptoms" 9 years after, expecting an overpriced oral B12 to help, concern over perfectly healthy blood pressures, mastocytosis w/u without any clear reason -- I suspect you are symptomatic partly due to some serious situational stress in your life. Focus on any help with this even though you do need to continue the mastocytosis workup. ...Read more

Systemic (Definition)

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