Good luck!  
Pam

Now on the hydroxyurea for over 3 weeks.  The light headed feeling and shortness of breath in the am is mostly gone.  I have noticed some stomach cramps followed by diarrhea.  More than normal and some flushing in late afternoon and evening.  More than normal.  Not sure what is up with that.  On the tryptase level,  before I started I was > 200.  Actually I had a reading of >400 last march from a different lab, different doctor.   I should have another reading after 3 weeks on this stuff by next week.  Then I go in again for another blood sample in 4 weeks.  Hope this works but it bothers me a bit that no one else on this forum seems to be trying this.  It was. Recommend to my doc by dr. Castell. I do not know here but from this forum she seems to be well known and well thought of.

Another update.   Not long after my last post I started flaring some, then worse.  So that was 4 days in row of evening flaring.  This is not typical unless something is triggering me.   So I got permission to stop the Hydroyurea for a few days to see what happens.  The day i stopped my intestinal cramping stopped but had a bad flare up.  Had to use all my  antihistamine tricks to keep up with it.   Talked to my allergist and she wants me to start what she calls a prednison drop down.   starting with 60mg/d for 3 days and then each subsequent 3 days dropping it down to 0 by 12 days.  Just took it this morning for the first time.   Interesting .....    Nervous energy and flushing cleared up within an hour.   I made the mistake of doing some research on prednisone.   Sounds like its effective but lots of side effects coming off of it....... I can hardly wait.  Not sure about restarting the hydroxyurea.   Will talk with Dr. Price tomorrow.

The hydroxyurea is not an official trail.  Its a recommendation by Dr. Castells to Dr. Price that i try it. Its a milder Chemo that has been around since the 1800s.   Many people with other diseases take it for decades but you do have to monitor blood count etc.   The Prednisone is used by other masto patients. It too has some nasty side effects and long term usage issues.  I am only taking it for a 12 day let down.  full dose 3 days, smaller does 3 days, etc. till no dose on day 13.  It clears up all of my symptoms for about 8 -10 hrs but last night I was flaring like crazy and sleeping was really not fun.  I guess its hard to sleep on Prednisone.   i am looking for another allergist and hematologist out here for another opinion.  I have found one hematologist, Dr Michael Mauro,  who has worked with Midostauren with DR. Gotlib.   And we have been trading emails.