As clinical trials show Imatinib (Glivec, Gleevec) is not effective in most mastocytosis patients with C-Kit D816V mutation. But in other forms of mast cell activation syndrome it seems to relieve the symptoms as some cases show.
As I suffer badly from MCAS without D816V I am wondering why my doctors are unwilling to give it a try. Is it only because of the immense price of almost 30$ per 100mg pill?
Novartis just lost its case against Indian manufacturers of Imatinib, so I am considering going there and giving it a try. It sells there for about 2$ per pill.  http://en.wikipedia.org/wiki/Novartis_v._Union_of_India_%26_Others
In my understanding improvement should show pretty fast. Of course I am scared of serious side effects but I am not willing to life much longer with all that fatigue and pain.

Another ray of hope is Masitinib: Phase III should end in June 2013.
http://clinicaltrials.gov/ct2/show/NCT00814073
Approval then may need another 6 months.

What I found at pubmed regarding MCAS and TKIs:
Mast cell activation syndrome masquerading as agranulocytosis.
Afrin LB.
http://www.ncbi.nlm.nih.gov/pubmed/22338992
Quote:

Polycythemia from mast cell activation syndrome: lessons learned.
Afrin LB.
http://www.ncbi.nlm.nih.gov/pubmed/21642812
Quote:

Mast cell activation disease: a concise practical guide for diagnostic workup and therapeutic options
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3069946/
Quote:

Dr. Afrin's presentation. He tells about 4 cases of MCAS where imatinib showed immense efficacy.
With slides: http://www.mastocytosis.ca/2011%20MSC%20Medical%20Lecture%20with%20Slides.pdf
Without slides: http://www.mastocytosis.ca/2011%20MSC%20Medical%20Lecture%20without%20slides.pdf...

I am a healthy 64-year old woman with systemic masto.  I am kitC negative but have bone marrow involvement and serious cutaneous involvement, my last trypto was 500.  Aside from sporatic itching, I feel fine.  My oncologist suggested I start on Gleevec, and his staff is searching for financial help.  I've read case studies of Dr. Afrin's, and I've read of the side effects.  Should I get a second opinion before starting this med?  Might it prevent future problems?  I'd appreciate any advice or comments.