Guest guest Posted April 11, 2002 Report Share Posted April 11, 2002 Má , que porra é essa de hydroxyurea ? Beijos, Bruno <no subject> > Hey Tev the drug man, just as well you got NF2... > > ummm. Well I think yes, if you needed it, you could get hydroxyurea here in > Australia. but for a child, you would be also considering the fact that it > is chemo, so weighing that up as well. > > Note it is being trialled in plexiform neurofibromas as well. Wasn't there a > problem with ru486. And what happened to the Sugen meningioma drug trial??? > Su---? Know anybody on that? > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 2, 2002 Report Share Posted June 2, 2002 Hi Rosemary, Sorry I am late on this - but I am way behind on emails due to the Klez.H virus.. - spent 5 days cleaning hard-drive formatting -re formatting blaa blaa blaa - IMART Peacock is a very accurate multi-leaf configuration system that gets as close to the tumour shape as possible. This system can deliver 1 dosage or can do multi-sessions (FSR). This is their website www.nomos.com you will have to search the site to gather all the information. There are 46 sites around the world who use this system, most being in the USA. I would first see, Dr Smee Department of Oncology Prince of Wales Hospital Randwick I know he has a new machine - but don't know what type - he also uses the multi-leaf configuration. As for the MRI machines - do you remember some time back there was an influx of new MRI machines???? Well most of those machines went to private hospitals - so you are going to have to do some Sherlock Holmes work and find a hospital that has the latest machine in Sydney. Ask your GP as a starting point..... ... <no subject> > > It has not grown for several years (23) if it starts to grow ill > > look into peacock I think because the site is very iffy for > > erability > > Lori, don't understand...how many years has it remained stable, since you > were 23?? Don't know old you are now... > > Also why peacock as opposed to FSR? Is it more safe,targetted? What is it > about the site of your tumor? is it around nerve? > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 3, 2002 Report Share Posted June 3, 2002 im 37 so its been stable at least 23 yrs?? abouts:) Also with Peacock, its like Bri said. It is so specific on tumor location it can be used on the spine. This is a cool technology:)~~Lori <no subject> > > It has not grown for several years (23) if it starts to grow ill > > look into peacock I think because the site is very iffy for > > erability > > Lori, don't understand...how many years has it remained stable, since you > were 23?? Don't know old you are now... > > Also why peacock as opposed to FSR? Is it more safe,targetted? What is it > about the site of your tumor? is it around nerve? > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 3, 2002 Report Share Posted June 3, 2002 Hi, Did you say peacock can be used on tumors on the spine? What is the difference between peacock and gamma knife anyway? I have had ten tumors in my head treated with gamma knife, and those tumors have been stable. I have an MRI about every six months, so the doctors are keeping a very close eye on things. Diane Original Message ----- To: <NF2_Crew > Sent: Monday, June 03, 2002 6:25 AM Subject: Re: <no subject> im 37 so its been stable at least 23 yrs?? abouts:) Also with Peacock, its like Bri said. It is so specific on tumor location it can be used on the spine. This is a cool technology:)~~Lori <no subject> > > It has not grown for several years (23) if it starts to grow ill > > look into peacock I think because the site is very iffy for > > erability > > Lori, don't understand...how many years has it remained stable, since you > were 23?? Don't know old you are now... > > Also why peacock as opposed to FSR? Is it more safe,targetted? What is it > about the site of your tumor? is it around nerve? > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 3, 2002 Report Share Posted June 3, 2002 Hi Diane:) Yes, i looked into this and gamma cannot be used on the spine yet. Although it does a great job of tumor mapping the frame to stablize the back is not perfected and a blast of rads could really do mage:( There is a crewbette that has had Peacock on her spine done at Stanford Univ. in California. It is a more 'modewrn' radiosurgery then gamma. Although i feel BOTH are exeedingly effective in the hands of a Dr with experience. Radiation therapies have 'grown-up' and i think we have more options now then even 10 years ago. I say, what ever works!! <no subject> > > > > > It has not grown for several years (23) if it starts to grow ill > > > look into peacock I think because the site is very iffy for > > > erability > > > > Lori, don't understand...how many years has it remained stable, since you > > were 23?? Don't know old you are now... > > > > Also why peacock as opposed to FSR? Is it more safe,targetted? What is it > > about the site of your tumor? is it around nerve? > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 3, 2002 Report Share Posted June 3, 2002 Hi Lori, Thanks for the information. That is just what my doctors have told me -- the gamma knife is not yet perfected for the spine, but they are working on it. Thank goodness! My first gamma knife was in 1991. They treated a left acoustic neuroma, and I can still hear a little out of that ear. (Of course, I do need to wear a hearing aid on that side.) They have treated nine other tumors in my head since then. I am very thankful for the gamma knife option! Diane --- Original Message ----- To: <NF2_Crew > Sent: Monday, June 03, 2002 10:44 AM Subject: Re: <no subject> Hi Diane:) Yes, i looked into this and gamma cannot be used on the spine yet. Although it does a great job of tumor mapping the frame to stablize the back is not perfected and a blast of rads could really do mage:( There is a crewbette that has had Peacock on her spine done at Stanford Univ. in California. It is a more 'modewrn' radiosurgery then gamma. Although i feel BOTH are exeedingly effective in the hands of a Dr with experience. Radiation therapies have 'grown-up' and i think we have more options now then even 10 years ago. I say, what ever works!! <no subject> > > > > > It has not grown for several years (23) if it starts to grow ill > > > look into peacock I think because the site is very iffy for > > > erability > > > > Lori, don't understand...how many years has it remained stable, since you > > were 23?? Don't know old you are now... > > > > Also why peacock as opposed to FSR? Is it more safe,targetted? What is it > > about the site of your tumor? is it around nerve? > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 5, 2002 Report Share Posted June 5, 2002 Hi Rosemary well I once saw in the SWOG trials that 72 percent of the meningiomas were stabilized or shrunk with RU- 486 .Actually this was another persons quote who had been taking the drug and mentioned the results so far of the SWOG clinilcal trials SW means South Western . Tev Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 5, 2002 Report Share Posted June 5, 2002 Rosemary this results was meningiomas in general and not specificaly for the NF2 type . Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 5, 2002 Report Share Posted June 5, 2002 Anybody taken Ru486 for meningiomas? or know of any results of this drug with NF2 tumors? This is what oncology here recommends for us....because they have to go with a track record. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 18, 2002 Report Share Posted June 18, 2002 Oh no ! !!!! Emm is from South Australia, I'll mail you Emese's mothers phone number. Will also send you an invite to view my OZ pics. I'll get al lthe real film pics put on disk and post those soon too. Was wonderful to meet you ine M <no subject> > > > > Hey can someone tell me what op Emese had? Am I right in thinking she is > in > > Aus, or is Nz? > > > > > > Quote Link to comment Share on other sites More sharing options...
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