I just turned 41. I was diagnosed with masto in 1994 when I started getting the UP spots all over. I had no other symptoms then except the spots and they didn't even itch then. The doc then told me its very rare and its rare to progress. Guess he was totally wrong. In 1998 I started getting massive headaches so they did a ct scan and found a brain tumor. Had brain surgury and they removed part of it and said it was either coming from the brain stem or too close to it to remover it all. The surgeon must of been an ego maniac because he didn't even test what he removed from my head so we don't even no if it was caused from the masto. After the surgury it took about 6 months to fully recover (although I no longer had a sense of smell). Then the headaches started coming back and the masto symptoms took off like wildfire. I was on all the masto meds and had to keep switching the cocktails til we found the ones that helped and even then once I was on them for a few months had to switch again because they weren't helping. I have headaches all the time but recently they are getting so bad I want to die. I have dealt with severe bone pain in my legs and joints for about 3 years now. Anyway by 2004 my doc was at a loss of what else to do since we couldn't get it under control. He sent me to MD Anderson Cancer Hospital in Houston, TX where they were doing clinical trials for Gleevec for systemic masto. They said they would have to do another bone marrow biopsy and if my mast cells were atypical and had the cd2 or cd25 markers it would show my masto cells were not normal mast cells but malignant and I would be in the trial. Well my mast cells were positive for both cd2 and cd25. At the time they hadn't done the test for the ckit mutation. They said once they got enough masto patients they would do the test for all of us at once. But they started me on Gleevec. I had to have blood work every week and return to the hospital every 3 months for a bmb. The mast cell #'s were going up not down. About 5 months after being on the chemo I started to get even sicker if you can imagine that. My liver was really bad. They finally did a liver biopsy and I had
a very sick liver with alot of necrosis. They stopped the Gleevec since it wasn't working anyway. It took quite a while for my liver to get better and the side effects from a bad liver are awful, worse than being a masto or on chemo. After a few months they wanted me to try another chemo 17-AAG or a SuperGleevec (which is suppose to work for masto's with the ckit 816 mutation or so they say) and my local doc said I would wait on that since they wouldn't tell him what the toxicity would be on my liver since it was already damaged. So here I am just waiting. I don't have anymore good days. I do take anti inflammatory naproxin sodium and lots of liquid benedryl daily. I think I forgot to mention that earlier. I buy the childrens liquid benedryl and take lots of it because it works faster than the pills. I also have epi pens because I am a "shocker". I also pass out but usually feel it coming on and sometimes can lay down before I fall down. I just got my latest blood work back today and it looks like my wbc is high, segmented neutrophils is high (that's always high) and lymphocytes is very low. I am sure my doc will call me friday and go over it like he always does.
I can only imagine how bad it must be to have a brain tumor as well as SM, I hope it isn't the brain tumor causing your headaches. You don't appear to be on any anti-inflammatory meds, I didn't get any relief from my headaches until I was put on anti-inflammatory meds (Brufen & Pyralin) even when on both H1 & H2 antihistamines and sodium cromoglycate. There's often an increase in Prostaglandin d2 with SM which causes vasodilation, vasodilation in the brain causes pain. Anti-inflammatories can help to decrease or inhibit vasodilation.
I'm sorry Gleevec didn't work for you, did your doctors know you had ckit 816 before putting you on it? Gleevec (Glivic in Australia) was only approved for use in Systemic Mastocytosis last year in Australia & only for SM without D816V ckit mutation. From what I understand there are several different 816 mutations each with different letters. I asked my doctor about the ckit mutations about 6 months ago & he admitted that he didn't know anything about it. So I don't know if I have 816 or not. Last time I saw him he still acted like he didn't know what I was talking about. I'm seeing him next week & have printed out a pile of research articles to give him so he'll have no more excuses! From what I've read recently there seems to be a lot of research going on & trials of treatments designed to target specific ckit mutations, in one trial they had 100% remission so I'm optimistic that in time there may be a cure for SM.
Just curious, how old are you? How long have you had SM? Do you have skin lesions? I'm 39, I was suspected of having SM at the end of 1999 but that was at least 10 years after I first started having some symptoms. Things got drastically worse around 1997 & I was tested for hundreds of things, changed doctors a few times and finally an endocrinologist decided to test tryptase and histamine. I didn't have any skin lesions until about 2 years ago which I think hindered the diagnosis a bit. I now have quite a lot of Telangiectasia Macularis Erruptiva Perstans and some Urticaria Pigmentosa.
I'm sorry that I'm probably not much help for your headaches but would like to keep chatting (writing) if you do.