Guest guest Posted November 29, 2000 Report Share Posted November 29, 2000 I have a question....For those of you on the crew who are currently using these medications like hydroxurea or thalomide, how do you get the drs. to like prescribe it for nf2 purposes. The reason i ask is because my drs. here in ny never once even suggested trying these for my daughter. These medications could be prescribed if i just request it or what? And the second question is if they are not sure of the affects with nf2 patients then are you in a clinical trial? Thnaks for the help, in ny Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 29, 2000 Report Share Posted November 29, 2000 ,I started the drug Hydroxyurea because MY las surgery in which an ABI was put in They did not get the whole tumor and I have one of those Jugular Foreman tumors bewhind the ABIplus other meningiomas and schwanomas.So I went o see Dr.Allan stein at Mt Sinai about possible drug treatment and he mentioned Hydroxyurea and sent me to Dr lieberman who was at Mt sinai at the time but is now in Pittsburg. And you want to eventually see a Neurooncologist like Dr.Lieberman .Tevyen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 29, 2000 Report Share Posted November 29, 2000 ,I started the drug Hydroxyurea because MY las surgery in which an ABI was put in They did not get the whole tumor and I have one of those Jugular Foreman tumors bewhind the ABIplus other meningiomas and schwanomas.So I went o see Dr.Allan stein at Mt Sinai about possible drug treatment and he mentioned Hydroxyurea and sent me to Dr lieberman who was at Mt sinai at the time but is now in Pittsburg. And you want to eventually see a Neurooncologist like Dr.Lieberman .Tevyen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 29, 2000 Report Share Posted November 29, 2000 ,I started the drug Hydroxyurea because MY las surgery in which an ABI was put in They did not get the whole tumor and I have one of those Jugular Foreman tumors bewhind the ABIplus other meningiomas and schwanomas.So I went o see Dr.Allan stein at Mt Sinai about possible drug treatment and he mentioned Hydroxyurea and sent me to Dr lieberman who was at Mt sinai at the time but is now in Pittsburg. And you want to eventually see a Neurooncologist like Dr.Lieberman .Tevyen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 30, 2000 Report Share Posted November 30, 2000 Thanks Tevyn actually depending on my daughters next set of mris (january) results that will be my next move. I mean for the last 2 years my daughter has been stable clinically (exams) however her tumors are continuing to grow. I just feel so helpless and im sick of heaing we will just watch her. Thank you again for the reply, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 30, 2000 Report Share Posted November 30, 2000 Thanks Tevyn actually depending on my daughters next set of mris (january) results that will be my next move. I mean for the last 2 years my daughter has been stable clinically (exams) however her tumors are continuing to grow. I just feel so helpless and im sick of heaing we will just watch her. Thank you again for the reply, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 30, 2000 Report Share Posted November 30, 2000 Thanks Tevyn actually depending on my daughters next set of mris (january) results that will be my next move. I mean for the last 2 years my daughter has been stable clinically (exams) however her tumors are continuing to grow. I just feel so helpless and im sick of heaing we will just watch her. Thank you again for the reply, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 30, 2000 Report Share Posted November 30, 2000 Never give up... if theres a will theres a way... Never take NO for an answer, don't let some doctor tell u its inoperable ( it means that THEY can not take it out) there is porabley a better doctor out there that can do what you want those people at HEI are the best. and if ur in the hospital and theya re not moving at your speed ( in my moms work kick them in the butt) to get them moving. sorry if this sounds retarted Bruder Re: Hydroxyurea Thanks Tevyn actually depending on my daughters next set of mris (january) results that will be my next move. I mean for the last 2 years my daughter has been stable clinically (exams) however her tumors are continuing to grow. I just feel so helpless and im sick of heaing we will just watch her. Thank you again for the reply, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 30, 2000 Report Share Posted November 30, 2000 Never give up... if theres a will theres a way... Never take NO for an answer, don't let some doctor tell u its inoperable ( it means that THEY can not take it out) there is porabley a better doctor out there that can do what you want those people at HEI are the best. and if ur in the hospital and theya re not moving at your speed ( in my moms work kick them in the butt) to get them moving. sorry if this sounds retarted Bruder Re: Hydroxyurea Thanks Tevyn actually depending on my daughters next set of mris (january) results that will be my next move. I mean for the last 2 years my daughter has been stable clinically (exams) however her tumors are continuing to grow. I just feel so helpless and im sick of heaing we will just watch her. Thank you again for the reply, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 30, 2000 Report Share Posted November 30, 2000 Never give up... if theres a will theres a way... Never take NO for an answer, don't let some doctor tell u its inoperable ( it means that THEY can not take it out) there is porabley a better doctor out there that can do what you want those people at HEI are the best. and if ur in the hospital and theya re not moving at your speed ( in my moms work kick them in the butt) to get them moving. sorry if this sounds retarted Bruder Re: Hydroxyurea Thanks Tevyn actually depending on my daughters next set of mris (january) results that will be my next move. I mean for the last 2 years my daughter has been stable clinically (exams) however her tumors are continuing to grow. I just feel so helpless and im sick of heaing we will just watch her. Thank you again for the reply, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 30, 2000 Report Share Posted November 30, 2000 - That didn't sound retarded. You are exactly right. I had the head neurosurgeon at that time in the hospital in 1970 tell me to go home and to live with it (double vision caused by tumor growing on vision nerve). If I had listened to him I would not be writing to you!!!!!! Another neurosurgeon did accomplish what he could not!!! Jane Re: Hydroxyurea Never give up... if theres a will theres a way... Never take NO for an answer, don't let some doctor tell u its inoperable ( it means that THEY can not take it out) there is porabley a better doctor out there that can do what you want those people at HEI are the best. and if ur in the hospital and theya re not moving at your speed ( in my moms work kick them in the butt) to get them moving. sorry if this sounds retarted Bruder Re: Hydroxyurea Thanks Tevyn actually depending on my daughters next set of mris (january) results that will be my next move. I mean for the last 2 years my daughter has been stable clinically (exams) however her tumors are continuing to grow. I just feel so helpless and im sick of heaing we will just watch her. Thank you again for the reply, Quote Link to comment Share on other sites More sharing options...
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