Guest guest Posted October 7, 2000 Report Share Posted October 7, 2000 Dear Crew, I've been contacting several neuro-oncologists and have these updates to provide: 1. Celebrex--Apparently alot of patients are beginning to use Celebrex. There may be a better product -- Apoptosyn, which is an analog of Celebrex but produces better cellular death. There may actually be some lab work on this one soon. 2. Exisulind--also known as CP461--may actually be an NF2 study on this product coming up 3. STI 571--for meningiomas--oral agent. There may be a phase a study of NF patients -- but I think NF1. 4. SU5416--also for meningiomas. There may also be a pediatric arm to this study as well 5. Temodal--still being tried by various patients Ask your doctors what they know about these drugs and their implications for NF2 tumors. We should start comparing notes and getting our doctors to do some of this research and request research be initiated. Barbara lin Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 10, 2000 Report Share Posted October 10, 2000 I sent the list of New drug therapies, with the questions that Barbara lin sent to the Crew recently, to Dr. Jackler at UCSF. He replied to me with, " Let me look into this - I'll see what I can find out from reputable sources. " Below is reply #1 that he has received. I'm not quite sure who Mike is. ----- Original Message ----- Rob, As far as I know, no drugs are even close to being proven effective in vivo for NF2-associated meningiomas and schwannomas. At the U.K. meeting in July, Bill Slattery discussed in vitro research that was being done at HEI in concert with a drug company. Those results are extremely encouraging, and they are applying for funding for a phase I clinical trial. However, there are some difficult issues involved, such as passage through the blood-brain barrier and measurement of effect in slow-growing tumors. I think Gareth is involved in research on an apoptotic agent with another drug company (Xeneca). I would encourage you to contact Bill or Gareth for more specific information about their research or the drugs that your patient is interested in. Mike Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 10, 2000 Report Share Posted October 10, 2000 I sent the list of New drug therapies, with the questions that Barbara lin sent to the Crew recently, to Dr. Jackler at UCSF. He replied to me with, " Let me look into this - I'll see what I can find out from reputable sources. " Below is reply #1 that he has received. I'm not quite sure who Mike is. ----- Original Message ----- Rob, As far as I know, no drugs are even close to being proven effective in vivo for NF2-associated meningiomas and schwannomas. At the U.K. meeting in July, Bill Slattery discussed in vitro research that was being done at HEI in concert with a drug company. Those results are extremely encouraging, and they are applying for funding for a phase I clinical trial. However, there are some difficult issues involved, such as passage through the blood-brain barrier and measurement of effect in slow-growing tumors. I think Gareth is involved in research on an apoptotic agent with another drug company (Xeneca). I would encourage you to contact Bill or Gareth for more specific information about their research or the drugs that your patient is interested in. Mike Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 10, 2000 Report Share Posted October 10, 2000 wow. Whats the celebrex for? i didnt know there were any drug therapies yet. bfrank4fr@... wrote: > Dear Crew, > I've been contacting several neuro-oncologists and have these updates to > provide: > 1. Celebrex--Apparently alot of patients are beginning to use Celebrex. > There may be a better product -- Apoptosyn, which is an analog of Celebrex > but produces better cellular death. There may actually be some lab work on > this one soon. > > 2. Exisulind--also known as CP461--may actually be an NF2 study on this > product coming up > > 3. STI 571--for meningiomas--oral agent. There may be a phase a study of NF > patients -- but I think NF1. > > 4. SU5416--also for meningiomas. There may also be a pediatric arm to this > study as well > > 5. Temodal--still being tried by various patients > > Ask your doctors what they know about these drugs and their implications for > NF2 tumors. We should start comparing notes and getting our doctors to do > some of this research and request research be initiated. > > Barbara lin Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 10, 2000 Report Share Posted October 10, 2000 wow. Whats the celebrex for? i didnt know there were any drug therapies yet. bfrank4fr@... wrote: > Dear Crew, > I've been contacting several neuro-oncologists and have these updates to > provide: > 1. Celebrex--Apparently alot of patients are beginning to use Celebrex. > There may be a better product -- Apoptosyn, which is an analog of Celebrex > but produces better cellular death. There may actually be some lab work on > this one soon. > > 2. Exisulind--also known as CP461--may actually be an NF2 study on this > product coming up > > 3. STI 571--for meningiomas--oral agent. There may be a phase a study of NF > patients -- but I think NF1. > > 4. SU5416--also for meningiomas. There may also be a pediatric arm to this > study as well > > 5. Temodal--still being tried by various patients > > Ask your doctors what they know about these drugs and their implications for > NF2 tumors. We should start comparing notes and getting our doctors to do > some of this research and request research be initiated. > > Barbara lin Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 10, 2000 Report Share Posted October 10, 2000 wow. Whats the celebrex for? i didnt know there were any drug therapies yet. bfrank4fr@... wrote: > Dear Crew, > I've been contacting several neuro-oncologists and have these updates to > provide: > 1. Celebrex--Apparently alot of patients are beginning to use Celebrex. > There may be a better product -- Apoptosyn, which is an analog of Celebrex > but produces better cellular death. There may actually be some lab work on > this one soon. > > 2. Exisulind--also known as CP461--may actually be an NF2 study on this > product coming up > > 3. STI 571--for meningiomas--oral agent. There may be a phase a study of NF > patients -- but I think NF1. > > 4. SU5416--also for meningiomas. There may also be a pediatric arm to this > study as well > > 5. Temodal--still being tried by various patients > > Ask your doctors what they know about these drugs and their implications for > NF2 tumors. We should start comparing notes and getting our doctors to do > some of this research and request research be initiated. > > Barbara lin Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 10, 2000 Report Share Posted October 10, 2000 In Australia they are prescribing Celebrex as the new wonder drug " anti-inflammatory " because it doesn't cause the usual stomach problems, ulcers etc. ine Re: New drug therapies > wow. Whats the celebrex for? i didnt know there were any drug therapies yet. > > bfrank4fr@... wrote: > > > Dear Crew, > > I've been contacting several neuro-oncologists and have these updates to > > provide: > > 1. Celebrex--Apparently alot of patients are beginning to use Celebrex. > > There may be a better product -- Apoptosyn, which is an analog of Celebrex > > but produces better cellular death. There may actually be some lab work on > > this one soon. > > > > 2. Exisulind--also known as CP461--may actually be an NF2 study on this > > product coming up > > > > 3. STI 571--for meningiomas--oral agent. There may be a phase a study of NF > > patients -- but I think NF1. > > > > 4. SU5416--also for meningiomas. There may also be a pediatric arm to this > > study as well > > > > 5. Temodal--still being tried by various patients > > > > Ask your doctors what they know about these drugs and their implications for > > NF2 tumors. We should start comparing notes and getting our doctors to do > > some of this research and request research be initiated. > > > > Barbara lin > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 10, 2000 Report Share Posted October 10, 2000 In Australia they are prescribing Celebrex as the new wonder drug " anti-inflammatory " because it doesn't cause the usual stomach problems, ulcers etc. ine Re: New drug therapies > wow. Whats the celebrex for? i didnt know there were any drug therapies yet. > > bfrank4fr@... wrote: > > > Dear Crew, > > I've been contacting several neuro-oncologists and have these updates to > > provide: > > 1. Celebrex--Apparently alot of patients are beginning to use Celebrex. > > There may be a better product -- Apoptosyn, which is an analog of Celebrex > > but produces better cellular death. There may actually be some lab work on > > this one soon. > > > > 2. Exisulind--also known as CP461--may actually be an NF2 study on this > > product coming up > > > > 3. STI 571--for meningiomas--oral agent. There may be a phase a study of NF > > patients -- but I think NF1. > > > > 4. SU5416--also for meningiomas. There may also be a pediatric arm to this > > study as well > > > > 5. Temodal--still being tried by various patients > > > > Ask your doctors what they know about these drugs and their implications for > > NF2 tumors. We should start comparing notes and getting our doctors to do > > some of this research and request research be initiated. > > > > Barbara lin > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 10, 2000 Report Share Posted October 10, 2000 In Australia they are prescribing Celebrex as the new wonder drug " anti-inflammatory " because it doesn't cause the usual stomach problems, ulcers etc. ine Re: New drug therapies > wow. Whats the celebrex for? i didnt know there were any drug therapies yet. > > bfrank4fr@... wrote: > > > Dear Crew, > > I've been contacting several neuro-oncologists and have these updates to > > provide: > > 1. Celebrex--Apparently alot of patients are beginning to use Celebrex. > > There may be a better product -- Apoptosyn, which is an analog of Celebrex > > but produces better cellular death. There may actually be some lab work on > > this one soon. > > > > 2. Exisulind--also known as CP461--may actually be an NF2 study on this > > product coming up > > > > 3. STI 571--for meningiomas--oral agent. There may be a phase a study of NF > > patients -- but I think NF1. > > > > 4. SU5416--also for meningiomas. There may also be a pediatric arm to this > > study as well > > > > 5. Temodal--still being tried by various patients > > > > Ask your doctors what they know about these drugs and their implications for > > NF2 tumors. We should start comparing notes and getting our doctors to do > > some of this research and request research be initiated. > > > > Barbara lin > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 10, 2000 Report Share Posted October 10, 2000 on 10/10/00 11:46 PM, Jennette Braaten at jennette@... wrote: > I sent the list of New drug therapies, with the questions that Barbara > lin sent to the Crew recently, to Dr. Jackler at UCSF. He > replied to me with, " Let me look into this - I'll see what I can find out > from reputable sources. " Below is reply #1 that he has received. I'm not > quite sure who Mike is. > > ----- Original Message ----- > Rob, > > As far as I know, no drugs are even close to being proven effective in vivo > for NF2-associated meningiomas and schwannomas. > > At the U.K. meeting in July, Bill Slattery discussed in vitro research that > was being done at HEI in concert with a drug company. Those results are > extremely encouraging, and they are applying for funding for a phase I > clinical trial. However, there are some difficult issues involved, such as > passage through the blood-brain barrier and measurement of effect in > slow-growing tumors. I think Gareth is involved in research on an > apoptotic agent with another drug company (Xeneca). > > I would encourage you to contact Bill or Gareth for more specific > information about their research or the drugs that your patient is > interested in. > > Mike > > > > Dear Jeannette, I have already enlisted the help of a good friend in targeting Gareth . She is based in London, presently, and her work and background is in philanthropic N.G.O's. She is formidable and has a brain like a steel trap. I have been trying to bring her up to speed on NF2 and I know she will help me in anyway possible. She rang a few days ago and said that Gareth is away for 2 weeks, but will call her on return. She thinks he is very accessible, and in the meantime she is contacting 2 other Clinics in the UK. I will keep all informed, but the more people asking questions, applying pressure, making contact the better! Rosemary. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 10, 2000 Report Share Posted October 10, 2000 on 10/10/00 11:46 PM, Jennette Braaten at jennette@... wrote: > I sent the list of New drug therapies, with the questions that Barbara > lin sent to the Crew recently, to Dr. Jackler at UCSF. He > replied to me with, " Let me look into this - I'll see what I can find out > from reputable sources. " Below is reply #1 that he has received. I'm not > quite sure who Mike is. > > ----- Original Message ----- > Rob, > > As far as I know, no drugs are even close to being proven effective in vivo > for NF2-associated meningiomas and schwannomas. > > At the U.K. meeting in July, Bill Slattery discussed in vitro research that > was being done at HEI in concert with a drug company. Those results are > extremely encouraging, and they are applying for funding for a phase I > clinical trial. However, there are some difficult issues involved, such as > passage through the blood-brain barrier and measurement of effect in > slow-growing tumors. I think Gareth is involved in research on an > apoptotic agent with another drug company (Xeneca). > > I would encourage you to contact Bill or Gareth for more specific > information about their research or the drugs that your patient is > interested in. > > Mike > > > > Dear Jeannette, I have already enlisted the help of a good friend in targeting Gareth . She is based in London, presently, and her work and background is in philanthropic N.G.O's. She is formidable and has a brain like a steel trap. I have been trying to bring her up to speed on NF2 and I know she will help me in anyway possible. She rang a few days ago and said that Gareth is away for 2 weeks, but will call her on return. She thinks he is very accessible, and in the meantime she is contacting 2 other Clinics in the UK. I will keep all informed, but the more people asking questions, applying pressure, making contact the better! Rosemary. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 10, 2000 Report Share Posted October 10, 2000 on 10/10/00 11:46 PM, Jennette Braaten at jennette@... wrote: > I sent the list of New drug therapies, with the questions that Barbara > lin sent to the Crew recently, to Dr. Jackler at UCSF. He > replied to me with, " Let me look into this - I'll see what I can find out > from reputable sources. " Below is reply #1 that he has received. I'm not > quite sure who Mike is. > > ----- Original Message ----- > Rob, > > As far as I know, no drugs are even close to being proven effective in vivo > for NF2-associated meningiomas and schwannomas. > > At the U.K. meeting in July, Bill Slattery discussed in vitro research that > was being done at HEI in concert with a drug company. Those results are > extremely encouraging, and they are applying for funding for a phase I > clinical trial. However, there are some difficult issues involved, such as > passage through the blood-brain barrier and measurement of effect in > slow-growing tumors. I think Gareth is involved in research on an > apoptotic agent with another drug company (Xeneca). > > I would encourage you to contact Bill or Gareth for more specific > information about their research or the drugs that your patient is > interested in. > > Mike > > > > Dear Jeannette, I have already enlisted the help of a good friend in targeting Gareth . She is based in London, presently, and her work and background is in philanthropic N.G.O's. She is formidable and has a brain like a steel trap. I have been trying to bring her up to speed on NF2 and I know she will help me in anyway possible. She rang a few days ago and said that Gareth is away for 2 weeks, but will call her on return. She thinks he is very accessible, and in the meantime she is contacting 2 other Clinics in the UK. I will keep all informed, but the more people asking questions, applying pressure, making contact the better! Rosemary. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 10, 2000 Report Share Posted October 10, 2000 why wud nf2 use it then? brain swelling? chronic pain? ine Stanton wrote: > In Australia they are prescribing Celebrex as the new wonder drug > " anti-inflammatory " because it doesn't cause the usual stomach problems, > ulcers etc. > ine > Re: New drug therapies > > > wow. Whats the celebrex for? i didnt know there were any drug therapies > yet. > > > > bfrank4fr@... wrote: > > > > > Dear Crew, > > > I've been contacting several neuro-oncologists and have these updates to > > > provide: > > > 1. Celebrex--Apparently alot of patients are beginning to use Celebrex. > > > There may be a better product -- Apoptosyn, which is an analog of > Celebrex > > > but produces better cellular death. There may actually be some lab work > on > > > this one soon. > > > > > > 2. Exisulind--also known as CP461--may actually be an NF2 study on this > > > product coming up > > > > > > 3. STI 571--for meningiomas--oral agent. There may be a phase a study > of NF > > > patients -- but I think NF1. > > > > > > 4. SU5416--also for meningiomas. There may also be a pediatric arm to > this > > > study as well > > > > > > 5. Temodal--still being tried by various patients > > > > > > Ask your doctors what they know about these drugs and their implications > for > > > NF2 tumors. We should start comparing notes and getting our doctors to > do > > > some of this research and request research be initiated. > > > > > > Barbara lin > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 10, 2000 Report Share Posted October 10, 2000 why wud nf2 use it then? brain swelling? chronic pain? ine Stanton wrote: > In Australia they are prescribing Celebrex as the new wonder drug > " anti-inflammatory " because it doesn't cause the usual stomach problems, > ulcers etc. > ine > Re: New drug therapies > > > wow. Whats the celebrex for? i didnt know there were any drug therapies > yet. > > > > bfrank4fr@... wrote: > > > > > Dear Crew, > > > I've been contacting several neuro-oncologists and have these updates to > > > provide: > > > 1. Celebrex--Apparently alot of patients are beginning to use Celebrex. > > > There may be a better product -- Apoptosyn, which is an analog of > Celebrex > > > but produces better cellular death. There may actually be some lab work > on > > > this one soon. > > > > > > 2. Exisulind--also known as CP461--may actually be an NF2 study on this > > > product coming up > > > > > > 3. STI 571--for meningiomas--oral agent. There may be a phase a study > of NF > > > patients -- but I think NF1. > > > > > > 4. SU5416--also for meningiomas. There may also be a pediatric arm to > this > > > study as well > > > > > > 5. Temodal--still being tried by various patients > > > > > > Ask your doctors what they know about these drugs and their implications > for > > > NF2 tumors. We should start comparing notes and getting our doctors to > do > > > some of this research and request research be initiated. > > > > > > Barbara lin > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 10, 2000 Report Share Posted October 10, 2000 why wud nf2 use it then? brain swelling? chronic pain? ine Stanton wrote: > In Australia they are prescribing Celebrex as the new wonder drug > " anti-inflammatory " because it doesn't cause the usual stomach problems, > ulcers etc. > ine > Re: New drug therapies > > > wow. Whats the celebrex for? i didnt know there were any drug therapies > yet. > > > > bfrank4fr@... wrote: > > > > > Dear Crew, > > > I've been contacting several neuro-oncologists and have these updates to > > > provide: > > > 1. Celebrex--Apparently alot of patients are beginning to use Celebrex. > > > There may be a better product -- Apoptosyn, which is an analog of > Celebrex > > > but produces better cellular death. There may actually be some lab work > on > > > this one soon. > > > > > > 2. Exisulind--also known as CP461--may actually be an NF2 study on this > > > product coming up > > > > > > 3. STI 571--for meningiomas--oral agent. There may be a phase a study > of NF > > > patients -- but I think NF1. > > > > > > 4. SU5416--also for meningiomas. There may also be a pediatric arm to > this > > > study as well > > > > > > 5. Temodal--still being tried by various patients > > > > > > Ask your doctors what they know about these drugs and their implications > for > > > NF2 tumors. We should start comparing notes and getting our doctors to > do > > > some of this research and request research be initiated. > > > > > > Barbara lin > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 11, 2000 Report Share Posted October 11, 2000 In my case it was PRE DIAGNOSIS when I was supposed to have a pinched nerve in my neck and tendonitis of the shoulder. ine Re: New drug therapies > > > > > wow. Whats the celebrex for? i didnt know there were any drug therapies > > yet. > > > > > > bfrank4fr@... wrote: > > > > > > > Dear Crew, > > > > I've been contacting several neuro-oncologists and have these updates to > > > > provide: > > > > 1. Celebrex--Apparently alot of patients are beginning to use Celebrex. > > > > There may be a better product -- Apoptosyn, which is an analog of > > Celebrex > > > > but produces better cellular death. There may actually be some lab work > > on > > > > this one soon. > > > > > > > > 2. Exisulind--also known as CP461--may actually be an NF2 study on this > > > > product coming up > > > > > > > > 3. STI 571--for meningiomas--oral agent. There may be a phase a study > > of NF > > > > patients -- but I think NF1. > > > > > > > > 4. SU5416--also for meningiomas. There may also be a pediatric arm to > > this > > > > study as well > > > > > > > > 5. Temodal--still being tried by various patients > > > > > > > > Ask your doctors what they know about these drugs and their implications > > for > > > > NF2 tumors. We should start comparing notes and getting our doctors to > > do > > > > some of this research and request research be initiated. > > > > > > > > Barbara lin > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 11, 2000 Report Share Posted October 11, 2000 In my case it was PRE DIAGNOSIS when I was supposed to have a pinched nerve in my neck and tendonitis of the shoulder. ine Re: New drug therapies > > > > > wow. Whats the celebrex for? i didnt know there were any drug therapies > > yet. > > > > > > bfrank4fr@... wrote: > > > > > > > Dear Crew, > > > > I've been contacting several neuro-oncologists and have these updates to > > > > provide: > > > > 1. Celebrex--Apparently alot of patients are beginning to use Celebrex. > > > > There may be a better product -- Apoptosyn, which is an analog of > > Celebrex > > > > but produces better cellular death. There may actually be some lab work > > on > > > > this one soon. > > > > > > > > 2. Exisulind--also known as CP461--may actually be an NF2 study on this > > > > product coming up > > > > > > > > 3. STI 571--for meningiomas--oral agent. There may be a phase a study > > of NF > > > > patients -- but I think NF1. > > > > > > > > 4. SU5416--also for meningiomas. There may also be a pediatric arm to > > this > > > > study as well > > > > > > > > 5. Temodal--still being tried by various patients > > > > > > > > Ask your doctors what they know about these drugs and their implications > > for > > > > NF2 tumors. We should start comparing notes and getting our doctors to > > do > > > > some of this research and request research be initiated. > > > > > > > > Barbara lin > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 11, 2000 Report Share Posted October 11, 2000 In my case it was PRE DIAGNOSIS when I was supposed to have a pinched nerve in my neck and tendonitis of the shoulder. ine Re: New drug therapies > > > > > wow. Whats the celebrex for? i didnt know there were any drug therapies > > yet. > > > > > > bfrank4fr@... wrote: > > > > > > > Dear Crew, > > > > I've been contacting several neuro-oncologists and have these updates to > > > > provide: > > > > 1. Celebrex--Apparently alot of patients are beginning to use Celebrex. > > > > There may be a better product -- Apoptosyn, which is an analog of > > Celebrex > > > > but produces better cellular death. There may actually be some lab work > > on > > > > this one soon. > > > > > > > > 2. Exisulind--also known as CP461--may actually be an NF2 study on this > > > > product coming up > > > > > > > > 3. STI 571--for meningiomas--oral agent. There may be a phase a study > > of NF > > > > patients -- but I think NF1. > > > > > > > > 4. SU5416--also for meningiomas. There may also be a pediatric arm to > > this > > > > study as well > > > > > > > > 5. Temodal--still being tried by various patients > > > > > > > > Ask your doctors what they know about these drugs and their implications > > for > > > > NF2 tumors. We should start comparing notes and getting our doctors to > > do > > > > some of this research and request research be initiated. > > > > > > > > Barbara lin > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 11, 2000 Report Share Posted October 11, 2000 Rosemary, Good work on behalf of all of us. We should make an impact with more and more of us asking questions, spreading the word, and perhaps even compiling our anecdotal experiences. Thanks so much, Vicki Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 12, 2000 Report Share Posted October 12, 2000 So does it work like a strong aspirin then?? With an analgesic? I sympathize with you ine, it was my neck that was the tip off for me too, very painful.-Lori Re: New drug therapies > > > > > > > wow. Whats the celebrex for? i didnt know there were any drug > therapies > > > yet. > > > > > > > > bfrank4fr@... wrote: > > > > > > > > > Dear Crew, > > > > > I've been contacting several neuro-oncologists and have these > updates to > > > > > provide: > > > > > 1. Celebrex--Apparently alot of patients are beginning to use > Celebrex. > > > > > There may be a better product -- Apoptosyn, which is an analog of > > > Celebrex > > > > > but produces better cellular death. There may actually be some lab > work > > > on > > > > > this one soon. > > > > > > > > > > 2. Exisulind--also known as CP461--may actually be an NF2 study on > this > > > > > product coming up > > > > > > > > > > 3. STI 571--for meningiomas--oral agent. There may be a phase a > study > > > of NF > > > > > patients -- but I think NF1. > > > > > > > > > > 4. SU5416--also for meningiomas. There may also be a pediatric arm > to > > > this > > > > > study as well > > > > > > > > > > 5. Temodal--still being tried by various patients > > > > > > > > > > Ask your doctors what they know about these drugs and their > implications > > > for > > > > > NF2 tumors. We should start comparing notes and getting our doctors > to > > > do > > > > > some of this research and request research be initiated. > > > > > > > > > > Barbara lin > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 12, 2000 Report Share Posted October 12, 2000 So does it work like a strong aspirin then?? With an analgesic? I sympathize with you ine, it was my neck that was the tip off for me too, very painful.-Lori Re: New drug therapies > > > > > > > wow. Whats the celebrex for? i didnt know there were any drug > therapies > > > yet. > > > > > > > > bfrank4fr@... wrote: > > > > > > > > > Dear Crew, > > > > > I've been contacting several neuro-oncologists and have these > updates to > > > > > provide: > > > > > 1. Celebrex--Apparently alot of patients are beginning to use > Celebrex. > > > > > There may be a better product -- Apoptosyn, which is an analog of > > > Celebrex > > > > > but produces better cellular death. There may actually be some lab > work > > > on > > > > > this one soon. > > > > > > > > > > 2. Exisulind--also known as CP461--may actually be an NF2 study on > this > > > > > product coming up > > > > > > > > > > 3. STI 571--for meningiomas--oral agent. There may be a phase a > study > > > of NF > > > > > patients -- but I think NF1. > > > > > > > > > > 4. SU5416--also for meningiomas. There may also be a pediatric arm > to > > > this > > > > > study as well > > > > > > > > > > 5. Temodal--still being tried by various patients > > > > > > > > > > Ask your doctors what they know about these drugs and their > implications > > > for > > > > > NF2 tumors. We should start comparing notes and getting our doctors > to > > > do > > > > > some of this research and request research be initiated. > > > > > > > > > > Barbara lin > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 13, 2000 Report Share Posted October 13, 2000 Lori It never worked. Because they believed I had some sort of inflammation, causing the trapped nerves (ha ha) they prescribed Celebrex. You understand fully the neck symptoms, from your previous description of yourself. It's so much fun and getting worse. Also having trouble swallowing, do you have that Lori? Par for the course, I suppose. Anyway as the symptoms progress, it assures me that the decision I made to have the surgery was a necessity, not choice, which I have since discussed with my Neurologist and he agrees. Talk to you soon, from a wet and very cool, Sydney, Australia ine Re: New drug therapies > > > > > > > > > wow. Whats the celebrex for? i didnt know there were any drug > > therapies > > > > yet. > > > > > > > > > > bfrank4fr@... wrote: > > > > > > > > > > > Dear Crew, > > > > > > I've been contacting several neuro-oncologists and have these > > updates to > > > > > > provide: > > > > > > 1. Celebrex--Apparently alot of patients are beginning to use > > Celebrex. > > > > > > There may be a better product -- Apoptosyn, which is an analog of > > > > Celebrex > > > > > > but produces better cellular death. There may actually be some > lab > > work > > > > on > > > > > > this one soon. > > > > > > > > > > > > 2. Exisulind--also known as CP461--may actually be an NF2 study > on > > this > > > > > > product coming up > > > > > > > > > > > > 3. STI 571--for meningiomas--oral agent. There may be a phase a > > study > > > > of NF > > > > > > patients -- but I think NF1. > > > > > > > > > > > > 4. SU5416--also for meningiomas. There may also be a pediatric > arm > > to > > > > this > > > > > > study as well > > > > > > > > > > > > 5. Temodal--still being tried by various patients > > > > > > > > > > > > Ask your doctors what they know about these drugs and their > > implications > > > > for > > > > > > NF2 tumors. We should start comparing notes and getting our > doctors > > to > > > > do > > > > > > some of this research and request research be initiated. > > > > > > > > > > > > Barbara lin > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 13, 2000 Report Share Posted October 13, 2000 ine...have you choked on your food? Since my surgery in Jan, I find swallowing a little more difficult and lately I am choking on food and DON'T know how I am doing it!!!! Carol ine Stanton wrote: > Lori > It never worked. Because they believed I had some sort of inflammation, > causing the trapped nerves (ha ha) they prescribed Celebrex. You understand > fully the neck symptoms, from your previous description of yourself. It's > so much fun and getting worse. Also having trouble swallowing, do you have > that Lori? Par for the course, I suppose. Anyway as the symptoms progress, > it assures me that the decision I made to have the surgery was a necessity, > not choice, which I have since discussed with my Neurologist and he agrees. > Talk to you soon, from a wet and very cool, Sydney, Australia > ine > > Re: New drug therapies > > > > > > > > > > > wow. Whats the celebrex for? i didnt know there were any drug > > > therapies > > > > > yet. > > > > > > > > > > > > bfrank4fr@... wrote: > > > > > > > > > > > > > Dear Crew, > > > > > > > I've been contacting several neuro-oncologists and have these > > > updates to > > > > > > > provide: > > > > > > > 1. Celebrex--Apparently alot of patients are beginning to use > > > Celebrex. > > > > > > > There may be a better product -- Apoptosyn, which is an analog > of > > > > > Celebrex > > > > > > > but produces better cellular death. There may actually be some > > lab > > > work > > > > > on > > > > > > > this one soon. > > > > > > > > > > > > > > 2. Exisulind--also known as CP461--may actually be an NF2 study > > on > > > this > > > > > > > product coming up > > > > > > > > > > > > > > 3. STI 571--for meningiomas--oral agent. There may be a phase > a > > > study > > > > > of NF > > > > > > > patients -- but I think NF1. > > > > > > > > > > > > > > 4. SU5416--also for meningiomas. There may also be a pediatric > > arm > > > to > > > > > this > > > > > > > study as well > > > > > > > > > > > > > > 5. Temodal--still being tried by various patients > > > > > > > > > > > > > > Ask your doctors what they know about these drugs and their > > > implications > > > > > for > > > > > > > NF2 tumors. We should start comparing notes and getting our > > doctors > > > to > > > > > do > > > > > > > some of this research and request research be initiated. > > > > > > > > > > > > > > Barbara lin > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 13, 2000 Report Share Posted October 13, 2000 ine...have you choked on your food? Since my surgery in Jan, I find swallowing a little more difficult and lately I am choking on food and DON'T know how I am doing it!!!! Carol ine Stanton wrote: > Lori > It never worked. Because they believed I had some sort of inflammation, > causing the trapped nerves (ha ha) they prescribed Celebrex. You understand > fully the neck symptoms, from your previous description of yourself. It's > so much fun and getting worse. Also having trouble swallowing, do you have > that Lori? Par for the course, I suppose. Anyway as the symptoms progress, > it assures me that the decision I made to have the surgery was a necessity, > not choice, which I have since discussed with my Neurologist and he agrees. > Talk to you soon, from a wet and very cool, Sydney, Australia > ine > > Re: New drug therapies > > > > > > > > > > > wow. Whats the celebrex for? i didnt know there were any drug > > > therapies > > > > > yet. > > > > > > > > > > > > bfrank4fr@... wrote: > > > > > > > > > > > > > Dear Crew, > > > > > > > I've been contacting several neuro-oncologists and have these > > > updates to > > > > > > > provide: > > > > > > > 1. Celebrex--Apparently alot of patients are beginning to use > > > Celebrex. > > > > > > > There may be a better product -- Apoptosyn, which is an analog > of > > > > > Celebrex > > > > > > > but produces better cellular death. There may actually be some > > lab > > > work > > > > > on > > > > > > > this one soon. > > > > > > > > > > > > > > 2. Exisulind--also known as CP461--may actually be an NF2 study > > on > > > this > > > > > > > product coming up > > > > > > > > > > > > > > 3. STI 571--for meningiomas--oral agent. There may be a phase > a > > > study > > > > > of NF > > > > > > > patients -- but I think NF1. > > > > > > > > > > > > > > 4. SU5416--also for meningiomas. There may also be a pediatric > > arm > > > to > > > > > this > > > > > > > study as well > > > > > > > > > > > > > > 5. Temodal--still being tried by various patients > > > > > > > > > > > > > > Ask your doctors what they know about these drugs and their > > > implications > > > > > for > > > > > > > NF2 tumors. We should start comparing notes and getting our > > doctors > > > to > > > > > do > > > > > > > some of this research and request research be initiated. > > > > > > > > > > > > > > Barbara lin > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 15, 2000 Report Share Posted October 15, 2000 Carol Others will be probably be best able to advise on food. As Jane said in an earlier e-mail, there are certain foods she doesn't eat and funnily enough I find I haven't been able to eat them for years. My difficulty with swallowing is not when eating, although I am a slow eater, always last to finish. But as the symptoms increase in my neck, I'm finding the swallowing problem is becoming more noticeable. My bottle of water and strong peppermints are with me always. It's not nerves, as it's something I've had for the past couple of years, but only on occasion, now it's regular. It can be a bit scary. Don't even want to think of the chances of it increasing with surgery. ine Re: New drug therapies > > > > > > > > > > > > > wow. Whats the celebrex for? i didnt know there were any drug > > > > therapies > > > > > > yet. > > > > > > > > > > > > > > bfrank4fr@... wrote: > > > > > > > > > > > > > > > Dear Crew, > > > > > > > > I've been contacting several neuro-oncologists and have these > > > > updates to > > > > > > > > provide: > > > > > > > > 1. Celebrex--Apparently alot of patients are beginning to use > > > > Celebrex. > > > > > > > > There may be a better product -- Apoptosyn, which is an analog > > of > > > > > > Celebrex > > > > > > > > but produces better cellular death. There may actually be some > > > lab > > > > work > > > > > > on > > > > > > > > this one soon. > > > > > > > > > > > > > > > > 2. Exisulind--also known as CP461--may actually be an NF2 study > > > on > > > > this > > > > > > > > product coming up > > > > > > > > > > > > > > > > 3. STI 571--for meningiomas--oral agent. There may be a phase > > a > > > > study > > > > > > of NF > > > > > > > > patients -- but I think NF1. > > > > > > > > > > > > > > > > 4. SU5416--also for meningiomas. There may also be a pediatric > > > arm > > > > to > > > > > > this > > > > > > > > study as well > > > > > > > > > > > > > > > > 5. Temodal--still being tried by various patients > > > > > > > > > > > > > > > > Ask your doctors what they know about these drugs and their > > > > implications > > > > > > for > > > > > > > > NF2 tumors. We should start comparing notes and getting our > > > doctors > > > > to > > > > > > do > > > > > > > > some of this research and request research be initiated. > > > > > > > > > > > > > > > > Barbara lin > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
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