Poor appetite, pain when you go to the toilet, anaemia, stomach problems such as feeling sick, being sick or the runs, anaphylactic shock, low blood pressure, low platelet count, low levels of albumin and too many bone marrow blasts2,5,6.
Tests for AdvSM
Tests for AdvSM may include a combination of4:
Full blood count and blood tryptase levels
Bone marrow test (biopsy)
DEXA scan (bone scan)
Other tests may include7:
Samples taken from areas such as your spleen or lymph nodes to check for the number or shape of mast cells in other parts of the body.
Questions to ask your doctor
What type of mastocytosis do I have?
Is my mastocytosis a type of cancer?
Should I carry an EpiPen?
How will advanced SM affect me?
What things can I no longer do?
What are my treatment options?
Are there any risks to the treatment?
What are the side effects of the treatment?
Will my symptoms go away after I start treatment?
How will I know if my treatment is working?
If treatment is not helping, what are my options?
Should I take part in a clinical trial?
How long do people with this disease live?
Are there support groups I can join?
Treatments for AdvSM
There is no cure for AdvSM but there are treatments available5.
There are two types of treatment approaches for AdvSM:
Treatments to treat the symptoms, also known as supportive treatments. These reduce the symptoms that can cause quality of life issues.
Treatments to stop the mast cells from growing and spreading. When mast cells grow too fast, they can stop some of the body’s organs from working properly. Although treatment can’t reduce the number of mast cells in your body, the treatments can try to stop them spreading.
Novartis would like to acknowledge the invaluable contribution of Leukemia Care in the development of this educational material.