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...
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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