My Doctor seems bound and determined to make me better.   I was diagnosed about 7 years ago and probably have had minor symptoms of systemic Masto going back 30yrs.  Right now I take Zantac, Zyrtec, gastrocrom, and accolade.  I have never had an event of Anaphylaxis (knock on wood).  But about once a year I flair bad enough (vomiting, diarhea, faint) that I cannot handle it and have to go to the hospital for 24-48 hrs of IV antihistamines, fluid and anti vomit drugs.   I have some symptoms most every day but they pass and do not affect about 90% of what I want to do.   But my Trypase is high (>400).  I tested positive for the c-kit mutation 7 years ago but a test a few months ago showed negative for it.  I can't do anything that will make me get hot (aerobic exercise, hot summer days, any fever).

My doctor, Dr. Kursteen Price, in Portland OR is familiar with the disease and knows and is in contact with Dr. Marianna Castell.   They are suggesting that I switch from the accolade to Zytol and then try some aspirin.  The zytol is suppose to desensitize me from the aspirin.  I know that I react to ibuprofen but am not sure about aspirin.

She also prescribed some prednisone for my next major flair up.  I used to take benedryl but it has become very ineffective lately.  I have had more luck with ketotifen and/or hyroxizine.  But some times that is not enough.

She said that Dr. Castell said that I should also consider taking some Hydroxyurea.   The thought is that it would lower the risk of the disease progressing to leukemia (no sign of that now) and that it would reduce the number of mutated mast cells and therefore improve my symptoms.  But a little google research by me shows that hydroxyurea has lots of side effects and is basically chemo.   And I still feel pretty good 95% of the time right now without that.  

So..... any experience or thoughts on Zyflo, Aspirin, Prednisone, and hydroxyurea?

Note that I did get a lot of good response when I asked about just the aspirin a while ago.

Thanks

So m

prednisone is a happy pill...boy will it make you feel better but be sure and research the effect on a long term basis before you commit yourself to a long term ...I have taken the prednisone pkg when necessary and feel really good during that time...
but just my opinion only.....I would never go on it without an exit plan
redbird

Joan wrote on 09/14/12 at 18:02:46:


Thanks for the reply.   It's zyflo not zytol and I was told that is was a luekotreine inhibitor?

As to the hydroxyurea.... I think because I tested positive for c-kit 7 years ago and my tryptase has doubled, that my allergist does not believe the current negative results.  So she wants to send a blood test to the mayo clinic.  I always thought you needed a bone marrow  test for c-kit but she claims that they can do it from a blood test?

I saw Dr. Gotlib about 7 years ago when he was first starting his drug study.  He said he wanted to include me on it but he had only used it on two patients and both were too advanced with leukemia for positive results.   My allergist then in Sacramento, Dr. Romary Halllet, and I decided that that my Masto was indolent and not agressive so I passed.

My hematologist in Portland, Dr. Soo,  says that chemo would do no good without a positive c-kit.  I have communicated with another hematologist up here, Dr. Mauro, who knows Dr. Gotlib.   He is familiar with the chemo that Gotlib is working on and is willing to talk to me.

So..... I think I will not do this till I do this blood sample with Mayo and see the results because I manage this disease fairly well and only have to go to the ER about once or twice a year.  Those times are not very fun..... But any long term chemo.....

Bob,
I agree with you.  Unless I am misunderstanding this...Why bring out the "big guns" for just a few weeks out of the year!  I mean if I were in your shoes I think I would wait until chemo was the ONLY/NEEDED option.
(I don't like being a guinea pig) Even though all of us mast cell people kind of are!
Good Luck,
Pam

PamH wrote on 09/15/12 at 09:26:36:


Yes I think I will wait till after I get new blood test.  Dr. Price says that the Mayo clinic can get the same results as a biopsy ( c-kit results) in a new blood test???   Anyhow if its bad then I will get a second opinion.

Sounds like a hematologist question.  If I had to guess, I'd think there would be places in the bones without abnormal mast cells.  

Bob;
I agree with Red: I'd be very careful with aspirin. It is guaranteed to make my face swell up so bad I can hardly see
& takes up to two weeks to go down, & body aches  badly for days. Tylenol is safe. Prednisone has a lot of negative effects longterm- but yes, sometimes your doc.s may feel the good outweighs the bad.  The "medical world" is always making advances, and maybe in 7 yr.s they do know more (let's hope so).
I will keep you in my thoughts  & hope your doctors can put their heads together to treat you correctly  
lori