Guest guest Posted March 9, 2000 Report Share Posted March 9, 2000 Hi Marie and yes i have been on hydroxyurea for more then two years now and the meningiomas have not grown but it is hard to tell if its because of the drug or because they are slow growing. Well im not going to take chances and will continue to take this drug until further meningioma growth shows up or a new and more poweful drug is found and is available.but for me Hydroxyurea is the way to go at this point ! I used to have blood tests every week and now it is every two weeks because my hemoglobin,Red blood cell,white blood cell, and Hct and platelet count are stable .In the first 6 months of taking the drug i need a blood transfusion .Barbara F. could you please tell me who is the other Crew member taking hydroxyurea so we can share our experiences with the drug . hope I filled you in Marie .Tev Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 9, 2000 Report Share Posted March 9, 2000 HI Gareth It's Alan here from good old Manchester, it's good to see you on the crew. I don't know if you know or are interested, but I am a member of the NFA in England and it's a group that meet now and again, have local support workers and information in the UK. they have a website at http://www.nfa.znet.co.uk and you can E-mail them at nfa@... just thought i'd mention it cheers Alan.Gordon.Manchester.UK (alan.gordon@...) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 9, 2000 Report Share Posted March 9, 2000 Thanks , I will be watching with interest. ... FW: NF2 Pill ? > > > , > > FRS may not be as new as '93/'94. I've been reading a book published in the mid-80's that describes FRS rather well. Perhaps it only got popular in the 90's?? > > I don't know the dose I'll be getting. The University of Pittsburgh (U of P) internet site says they have treated 512 AN patients there and " the mean dose to the margin of the tumor was 15 Gy " . I think 'margin' is a doctor's way of saying 'edge'. The symbol Gy is a 'Gray' which is the new symbol for dose (100 Rad = 1 Gy). So the mean dose they gave was 1500 Rad. I hope I will not be getting much more than that but I will find out. I suspect the bulk of the patients were Unilateral AN people. They treated 412 patients with meningiomas and the mean dose was 15 Gy (perhaps everyone gets 15 Gy??). > > I'm not sure how they deliver the dose either. The U of P internet site talks about multiple 'isocenters " . It appears these isocenters are the focal points of the gamma rays. I think they give the dose in a few short bursts rather than a single big one. Each burst may have a different focal point on the tumour. This would be particularly important when the tumour has an irregular shape. Kinda like FRS done at one sitting. > > Hey Brain, I can tell you are not a mathematician.... 3000/200 = 15 ) > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 9, 2000 Report Share Posted March 9, 2000 I was asking for someone else, tho I don't remember who, but hopefully they read this and got their answer. Thanks Tev. Marie Re: NF2 Pill ? >From: dorft@... > >Hi Marie and yes i have been on hydroxyurea for more then two years now and >the meningiomas have not grown Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 10, 2000 Report Share Posted March 10, 2000 Hi and to answer your question as to why I take hydroxyurea ?I have multiple meningiomas in areas that are very dangerous to operate on and surgery would be very risky as well as radiation. Also I dont mean to frighten you but I should be honest that many of the people in the crew who have had major complications and have even died were in many cases caused by these meningiomas. So if this drug can possibly control the growth it is well worth the try for me .Hope I help answer your question look forward to seeing you in Santa Fe,Tev Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 12, 2000 Report Share Posted March 12, 2000 Hi Sheryn, Thanks for your note. I'll send a post when it's all over. The treatment date is April 18th and I should be home on the 20th. The treatment is all the same day. I hope to send a note on the 21st or 22nd to say how it all went. ============= Hello , I wish you well on your GK treatment. You'll have to tell us about when you are finished. How many treatments do you have and for how long, or is that known yet. Thanks for the information . Sheryn Quote Link to comment Share on other sites More sharing options...
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