Living with Mastocytosis

Still kicking

Published on 2008-01-29 18:52:00

I have not died, I only have dial-up connection to the internet just now.Healthwise, I am about the same as I have been since I've been receiving treatment by the oncologist and he has me on the mastocytosis protocol. Altogether, I take about 14 pills a day. Unless I take more.AMDoxepinNexiumTagametWellbutrinCymbaltaClaritenPMDoxepinTagametSingulairLevsinAtavan (2 or more)Darvocet (pain is worse at night)GABAGABA is an amino acid that really helps to calm and to sleep, which is important since

Government: FUBAR

Published on 2007-07-09 23:11:00

I had my blood tested last Thursday. I'd started having some stomach problems and the rashes and itching had gotten so bad I could not tolerate it anymore. My rashes had turned into sores, they had gotten so bad.They took about a quart, it seemed, so I hope it shows something.I see the oncologist again on the 18th and I'm hoping he will have found some way for me to get the tryptase levels tested.My internist heard from Dr. Robyn at the NIH and her office is telling me that I have to have the

Kinases? Oncogenesis? Tyrosine? What language is this?

Published on 2007-07-01 01:28:00

Here it is:For example, the NIAD researchers recently discovered that patients with a particularly aggressive form of the disease have a mutation in c-kit tyrosine kinase; such patients respond spectacularly well to the cancer ‘wonder drug’: imatinib mesylate (Gleevec). However, the most frequent mutations—those in c-kit D816—are relatively resistant to imatinib. “If you don’t find the 816 mutation you can tell parents that their child’s chances are pretty good,” says Metcalfe. T