Hey Maura - what a wonderful story about your childhood sweetheart!! I guess you are racking up the frequent flyer miles!:) OK, I went back to the MD Anderson website and their specialists are listed on this page: /diseases/mpd/display.cfm?id=7b2b96eb-ed46-4d10-bb71f64f02b62def&method=displayfull
for some reason this box won't let me put it all in (not sure about that but the address starts with mdanderson.org then add the rest). You'll need to read the bios to find the 3 ET specialists. Sorry, I saw them all on one page with their pictures before but can't find it now! Anyway, they are at least 5 yrs ahead of everyone else on their treatments so if there are options other than the few we are offered now, they would surely know.
My take on the general body of knowledge out there that the rest of the blood drs have is that since their approach to cancer is to nuke it out of the patient, they approach ET the same way. I don't think they know any better and they surely don't see many ET patients in their practice. I asked my dr for the lowest dose available to try first. So we started out with 500mg. I found out on the internet that Hydrea is also offered in 200mg doses but the 2 pharmacists I talked to about it said they'd never seen it lower than 500 and the 200 is probably available only in Canada. My dr explained that platelets are most sensitive to the medication so it works on them first. That's why we need to be monitored so that once our platelets are lowered, it will start working on the red or white blood cells. I had my CBC taken after the 1st & 2nd week of meds. Then the 4th and now I don't have to have it monitored until the first week of June. yea!! If all is going well then we are going to work on adjusting how often I take it so that I don't have to take it every day. I have to say Maura, I was really worried about losing my hair or getting sores around my mouth (both listed as side effects) but luckily the dose is so low that it hasn't been a problem. I also feel like these bulletin boards are my link to sanity. This is really hard to deal with since there is so little info out there. One question - have you noticed your friends reaction to ET? My friends either can't deal with it at all or have been pretty supportive. It has taught me alot about how I should approach friends with chronic disease.
take care
Barbara