I was diagnosed in 95 w/ cutaneous masto.  No symptoms except spots. Then in 98 underwent brain surgery for a brain tumor (removed only part of it) then my symptoms really started with the masto.  By 2004 nothing was relieving the symptoms.  Went to MD Anderson in Houston and started on Gleevec.  My bone marrow biopsies (6 all together) showed the Gleevec wasn't working but caused alot of liver damage so we had to stop it.  Then found out its because I have the mutation in CKIT 816.  Had to take a medical retirement.  About a year ago a friend that has MS turned me onto LDN (Low Dose Naltrexone).  I read alot about it and glad to see there was no side effects so I discussed it with my doctor and he said may as well try it.  So I was on LDN for a year.  Right away it eased my severe masto migraines which I had all the time.  It cleared the masto fog and I could actually concentrate on reading a book.  It didn't help with all my other symptoms but I was happy with it helping the head pain since there was absolutely nothing but ice packs that would help.  So for some reason last January I stopped taking all my masto meds.  I just got so tired of being on meds and wanted to give my body a rest.  Big mistake, anyway went back to the doctor after about a month.  I went back on H1, H2 blockers and Cymbalta for the bone pain since I refuse any strong pain meds because they set off the anaphylaxis.  Well the cymbalta eased some of the bone pain but the masto migraines were killing me.  Went back to the doc yesterday and he put me back on the LDN since we know it eased the head pain before.  He told me this time he will not allow me to stop taking it.    To me quality of life and more important than quantity of life.  with LDN my quality is much more improved.  

Ramona,

Actually I shocked less when I was on the LDN before so I am hoping being back on it I will have less anaphylaxis.  It didn't effect anything in my blood work and there are no side effects and it really did help w/the masto migraines, masto fog and confusion.  I am back on it now its only been a day but I am sure in a few days I will feel a difference.  You can't go wrong trying it.  I also have an enlarged liver and spleen but they are still working although I have a ton of scarring on my liver.  I don't do all the yearly testing anymore ie: full body bone scan, ct scans or bmb.  My doc does bloodwork a few times a year and that is it.  I can't see spending all that money on tests when there is no treatment.  I use to get them done all the time but even my doc agreed.  After going thru 6 bmb's I refuse to do anymore.

Joan I have not heard of that.  I will google it and see what I find.  If its a chemo I will probably pass on it.  Now that I live in a little town in Utah I have a new doc who didn't really know about masto so that last 2 yrs he has been all over the internet learning about it.