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Doctor insights on: Alternative Treatments For Systemic Mastocytosis

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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:
Is treatment necessary for systemic mastocytosis? I am taking gleevec (imatinib). What would happen if i stopped taking it?

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

Dr. Brant Ward
44 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

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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

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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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What is the survival rate of patients with systemic mastocytosis?

What is the survival rate of patients with systemic mastocytosis?

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

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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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Is systemic mastocytosis life-threatening?

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 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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How can I find a physician that is an expert in systemic mastocytosis in portland or? I have been to many drs, but none knowledgeable about masto.

How can I find a physician that is an expert in systemic mastocytosis in portland or? I have been to many drs, but none knowledgeable about masto.

Mastocytosis: http://www.tmsforacure.org/welcome.php i would start with this website and call them to recommend people in your community who provide therapy for mastocytosis. The university of michigan is the leader in mastocytosis, so they can be used as another resource to get the help you need. ...Read more

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Which genetic test is performed in diagnostic workup of systemic mastocytosis? Apart from trypsine and IgE, which allergo-tests would you recommend?

Codon 816: A mutation of A to T at codon 816 of c-kit can be tested for but is not widely available. Other tests are 24 hour urine for histamine metabolites, abnormal mast cell membrane Immunophenotype, and of course studies of mast cells in bone marrow, alpha form of tryptase levels. ...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

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Agg. systemic mastocytosis. This mean my anaphylaxis food/drug allergies will now end since on Cromolyn? Could ITP dx be part of ASM or can have both?

Agg. systemic mastocytosis. This mean my anaphylaxis food/drug allergies will now end since on Cromolyn? Could ITP dx be part of ASM or can have both?

No, and No: cromolyn will not end probability of anaphylaxis, and if it happens needs to be treated, ITP isn't part of the disease, yes a patient can have both as separate diseases, aggressive severe mastocytosis is a rare disease, much rare than systemic mastocytosis, which is already a rare disease, diagnosis / management need to be in a tertiary care facility, need to adhere to treatment well & follow up ...Read more

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22yr female. Experience the following symptoms: angioedema, chronic urticaria, anaphylaxis, bone/muscle pain etc, is this systemic mastocytosis?

22yr female. Experience the following symptoms: angioedema, chronic urticaria, anaphylaxis, bone/muscle pain etc, is this systemic mastocytosis?

Serum tryptase level: You're certainly describing an entity that sounds histamine mediated but of course can be due to other causes and mediators. Does she have urticaria pigmentosa? Have you done a serum tryptase level? To my knowledge the one definitive diagnostic is a bone marrow bx. The other lab i look at to asses a histamine mediated process is anti high affinityfc epsilon receptor antibodies. Any meds? ...Read more

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What are the side effects of treatment for mastocytosis?

What are the side effects of treatment for mastocytosis?

Minimal: Antihistamines are the mainstay of treatment. Older antihistamines may cause sedation and should be used with caution in the elderly, but newer one are generally tolerated well. For systemic mastocytosis with diarrhea, some people use cromolyn. This also has relative few side effects, with a few people experiencing GI upset. Always consult your doctor before taking any new medications. ...Read more

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Anyone know treatment of mastocytosis?

Anyone know treatment of mastocytosis?

Topical steriods: If your mastocytosis is symptomatic, then prescription strength topical steriods are beneficial. ...Read more

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Can you suggest any alternative treatments to reduce cysts?

Can you suggest any alternative treatments to reduce cysts?

Where?: Cystic change in the breasts is very common. Of course if you have a dominant breast mass, it needs to be seen as a possible cancer. Mainstream medicine has little to offer. I've had colleagues tell me that evening primrose oil is the first herbal to try for painful / lumpy breasts. An evidence-based holist in your community may be able to offer more. ...Read more

Systemic (Definition)

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