I was diagnosed with Systemic Masto about 6 years ago with a tryptase level of 200 and I think the % of mutated cells in my bone marrow biopsy was about 1.5%.

I had a bad flare up and had to go to the hospital before new years.  I do not get anaphlactic but I get flushed, then shakes, then uncontrolled vomit and D.   It took them a while to get me under control this time.  

Anyhow after that visit.... a couple week later they took a tryptase reading and it was 400.... yikes.   So they are going to rebaseline me with a new bone marrow biopsy and bone density.  

What scares me a bit is that my Doctor is talking about chemo.   She said she won't know if this thing has turned malignant till the biopsy but she was try to make me feel better that if it does turn out bad that there is a good chemo treatment.  Yuck.

This is a new doctor for me.  Kursteen Price, in Portland OR.   She has worked at the NIH and has had or seen many masto patients.

I saw a recent post that tryptase can be high after an episode.   Anybody with tryptase that high or having it be high for at least 2 weeks after an attack.

Hi Bob,

  I also have SM, and the doctor who is following my case is Jason Gotlib, a hematologist and SM expert at Stanford U. Cancer Center in Palo Alto.  He regularly treats SM patients, is a close friend of Dr. Akin, who recommended that I ask him to follow my case after my doctor here suddenly passed away.  Dr. Gotlib only sees patients who already have an SM diagnosis, and I'm positive he's up on the latest diagnostics, genetic testing, and treatments.  I was very impressed with his knowledge of mastocytosis.  I'm also very glad the did my BMB!  Dr. Stephen Coutre' did it, and it was completely and totally painless.  A lot of specialized tests were done, and I was uncertain whether those all could have been run just anywhere.

  Your doctor may or may not be correct about some sort of chemo.  I was told here that I would need chemo, and instead, I'm just being watched closely for now.   BTW, Dr. Gotlib was involved in the last TMS For A Cure national meeting, and has been involved in research into new drug treatments.

  I don't know anything about your doctor, but at the very least, please do get a second opinion from a mast cell disease expert before you undergo any kind of treatment more serious than daily meds.  If your CBCs are still normal, you might find that you need only an increase in antihistamines or an additional medicine or two, like Singulair for example, to get control of your symptoms.

  There is a new treatment called Midostaurin (PKC412) that you might want to read about.  I don't know if the clinical trials are complete yet, but it was in Stage III Trials the last I heard.  It's a daily pill or two and is having great results in the few people I know who've been taking it.

  Chemo doesn't mean what it used to mean in many cases.  There are very specific markers and defects that determine which medicine is used, but only if you need it.  I  felt very confident that Dr. Gotlib could figure that out, and that I could rely on the results.  An alternative would be to go to the researchers in Boston.

  BTW, there's a new drug for SM that was in Phase III trials about a year ago.  That may be finished by now.  I'm not sure if it was developed or just tested at Stanford, but they seem knowledgeable about it.  It kills mast cells at a certain stage of their growth and had few side effects the last time I talked with someone who was on it about a year ago.  One person said that before it (Midostaurin/PKC412) he was very, very ill, and now his liver and spleen have reverted to normal, his bloodwork is good, and he was out chopping wood!

  So, there's reason to be hopeful.  Try to ignore the terminology (I HATE the words "chemo" and "malignant"   )   Let us know how you're doing!

Have you joined the Pacific Northwest Mast Cell Support Group? If you haven't yet there is some other patients in your area that might be great resources. Pm me if you want to join the group.
Melissa