Guest guest Posted September 6, 2000 Report Share Posted September 6, 2000 Hi Lori and best of luck to you on your Hydroxyurea treatment and I have been taking it 3 years and there has been no Further growth in that type frame .Hopefully its the effect of the drug and not that it isnt slow growing ..Keep me informed how your treamtnet is going . Tevyen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 7, 2000 Report Share Posted September 7, 2000 Hi Greg good to hear from you and hope to see you and Jeanette in Santa Fe.Ill be coming down late Wednesday night and heard its a very nice place! About hydroxyurea I have too look up what the action ison meningiomas but these German doctors discovered that it shrunk or kept stable meningiomas in people and now they are doing clinical trials with it . As far as Schwanomas go I think it isnt known yet if ithas the same effect as on meningiomas . but from what you tell me the tumor you had radiated may have been a meningioma and A drug like Hydroxyurea could have been tried . you know we all get Bilateral Acoustic Neuromas but most of the other tumors are meningiomas that we get and Im not sure but if the drug has an effect on meningiomas of the head you would think it would have the same effect on spinal tumors ? hope to see you and Jenn at the con ! Keep in touch ,Tev Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 13, 2000 Report Share Posted September 13, 2000 Hey Tevyen, What it your dosage of Hydrox. and how often?? I think mine is high. I take 500mg twice a day. I just started about a week ago, have my first blood work done tomorrow. So far so good!! I haven't gotten sick from the drug so far either. So here is hoping:) -Lori Re: UCSF Docs > Hi Vicki and the kind of tumors they are measuring are meningiomas and > schwanomas and during the first 6 months that I was on Hydroxyurea I needed > one blood trnasfusion because my hemoglbin and red blood cell count had > become to low but since then my blood counts have been stable and I go every > 2 weeks for a blood test to measure my red blood cell, hemoglbin, white blood > cell, platlet and a few other counts and for the last 21/2 years they have > been stable and I never got nausau from the drug at all and I used to get > alittle constipated but not in a long time and as chemotheapeutic drugs go > the side effects have been minimal to this point . there are other durgs > being tried on meningimas such as octreotide,interferon alpha ,tamoxifen, > RU-486 which is only used in clinical trials for meningiomas in this country > andthe drugs that Barbara lin mentioned .any other questions good luck > ,Tevyen > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 13, 2000 Report Share Posted September 13, 2000 Hey Tevyen, What it your dosage of Hydrox. and how often?? I think mine is high. I take 500mg twice a day. I just started about a week ago, have my first blood work done tomorrow. So far so good!! I haven't gotten sick from the drug so far either. So here is hoping:) -Lori Re: UCSF Docs > Hi Vicki and the kind of tumors they are measuring are meningiomas and > schwanomas and during the first 6 months that I was on Hydroxyurea I needed > one blood trnasfusion because my hemoglbin and red blood cell count had > become to low but since then my blood counts have been stable and I go every > 2 weeks for a blood test to measure my red blood cell, hemoglbin, white blood > cell, platlet and a few other counts and for the last 21/2 years they have > been stable and I never got nausau from the drug at all and I used to get > alittle constipated but not in a long time and as chemotheapeutic drugs go > the side effects have been minimal to this point . there are other durgs > being tried on meningimas such as octreotide,interferon alpha ,tamoxifen, > RU-486 which is only used in clinical trials for meningiomas in this country > andthe drugs that Barbara lin mentioned .any other questions good luck > ,Tevyen > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 14, 2000 Report Share Posted September 14, 2000 Listen young lady, Ha Ha Ha. When are you going to leap tall buildings and eat atomic bombs. Ha Ha Ha ha as you have just about done everything else to belt NF2 for six......... BRI..........an... Re: UCSF Docs > > > > Hi Vicki and the kind of tumors they are measuring are meningiomas and > > schwanomas and during the first 6 months that I was on Hydroxyurea I > needed > > one blood trnasfusion because my hemoglbin and red blood cell count had > > become to low but since then my blood counts have been stable and I go > every > > 2 weeks for a blood test to measure my red blood cell, hemoglbin, white > blood > > cell, platlet and a few other counts and for the last 21/2 years they have > > been stable and I never got nausau from the drug at all and I used to > get > > alittle constipated but not in a long time and as chemotheapeutic drugs > go > > the side effects have been minimal to this point . there are other durgs > > being tried on meningimas such as octreotide,interferon alpha ,tamoxifen, > > RU-486 which is only used in clinical trials for meningiomas in this > country > > andthe drugs that Barbara lin mentioned .any other questions good > luck > > ,Tevyen > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 14, 2000 Report Share Posted September 14, 2000 Listen young lady, Ha Ha Ha. When are you going to leap tall buildings and eat atomic bombs. Ha Ha Ha ha as you have just about done everything else to belt NF2 for six......... BRI..........an... Re: UCSF Docs > > > > Hi Vicki and the kind of tumors they are measuring are meningiomas and > > schwanomas and during the first 6 months that I was on Hydroxyurea I > needed > > one blood trnasfusion because my hemoglbin and red blood cell count had > > become to low but since then my blood counts have been stable and I go > every > > 2 weeks for a blood test to measure my red blood cell, hemoglbin, white > blood > > cell, platlet and a few other counts and for the last 21/2 years they have > > been stable and I never got nausau from the drug at all and I used to > get > > alittle constipated but not in a long time and as chemotheapeutic drugs > go > > the side effects have been minimal to this point . there are other durgs > > being tried on meningimas such as octreotide,interferon alpha ,tamoxifen, > > RU-486 which is only used in clinical trials for meningiomas in this > country > > andthe drugs that Barbara lin mentioned .any other questions good > luck > > ,Tevyen > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 14, 2000 Report Share Posted September 14, 2000 Listen young lady, Ha Ha Ha. When are you going to leap tall buildings and eat atomic bombs. Ha Ha Ha ha as you have just about done everything else to belt NF2 for six......... BRI..........an... Re: UCSF Docs > > > > Hi Vicki and the kind of tumors they are measuring are meningiomas and > > schwanomas and during the first 6 months that I was on Hydroxyurea I > needed > > one blood trnasfusion because my hemoglbin and red blood cell count had > > become to low but since then my blood counts have been stable and I go > every > > 2 weeks for a blood test to measure my red blood cell, hemoglbin, white > blood > > cell, platlet and a few other counts and for the last 21/2 years they have > > been stable and I never got nausau from the drug at all and I used to > get > > alittle constipated but not in a long time and as chemotheapeutic drugs > go > > the side effects have been minimal to this point . there are other durgs > > being tried on meningimas such as octreotide,interferon alpha ,tamoxifen, > > RU-486 which is only used in clinical trials for meningiomas in this > country > > andthe drugs that Barbara lin mentioned .any other questions good > luck > > ,Tevyen > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
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