Guest guest Posted June 3, 2002 Report Share Posted June 3, 2002 GK machine can only treat the head - all other machines can do just one treatment or multi- treatments - multi treatments are called Fractionated Stereotactic Radiosurgery/therapy or FSR for short. If you want to learn more about FSR - then type in to your favorite search engine - " Fractionated Stereotactic Radiosurgery " - this will bring up a number of sites in the USA for you to research. . <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 4, 2002 Report Share Posted June 4, 2002 Hi , Thanks for the information. I will check it out when I get home from the health club today. Diane ---- Original Message ----- To: <NF2_Crew > Sent: Monday, June 03, 2002 8:04 AM Subject: Re: <no subject> GK machine can only treat the head - all other machines can do just one treatment or multi- treatments - multi treatments are called Fractionated Stereotactic Radiosurgery/therapy or FSR for short. If you want to learn more about FSR - then type in to your favorite search engine - " Fractionated Stereotactic Radiosurgery " - this will bring up a number of sites in the USA for you to research. . <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 13, 2002 Report Share Posted June 13, 2002 Hi Rosemary and So far my tumors both schwanoomas and Meningiomas have remained stalbel over a 3 year period and I will be havingmy next CAT scan in October which will make it five years. At first I needed a blood tranfusion after 6 months because my hemoglbin count got too low but for the last 4 years my blood count WBC,RBC Hemoglobin ,Platelets HCV MRV have remained relatively stable and somehwat lower than normal levels but not by alot . I use to have constipation but no more and the actualside effects are minimal.If I didnt know I was takinthe drug Id never know it . I have bllod tests every three weeks now it usaed to be once a week in the beggining then twice aweek but since i see itsa stable and stablenow i go once every 3 weeks and they prickmy finger and take alittleblood . Rosemary what is your source and why do they think Hydroxyurea combined with Lovastatin may be the way to go for NF2 ? Please let me know . Have a nice weekend ,Tev Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 18, 2002 Report Share Posted June 18, 2002 If I'm right, Em is from WA. I'd also like her Mum's phone number or an address to send a card. ine <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...
Guest guest Posted June 23, 2002 Report Share Posted June 23, 2002 Dear crew, sorry to be bothersome, but would REALLLLLLLy appreciate responses. Does anybody take anti-histamines regularly? Anybody on long-term asthma medication? If so , which ones? How long? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 11, 2002 Report Share Posted August 11, 2002 --- Rosemary Lee wrote: > Actually ,here is another way of asking about the > seeding/mets question. > Last week oncology described Louis' tumor as > evidence of 'active disease'. > > My question to crew>>>>>> has anybody had any > periods with no > tumors??????(of course I mean after tumors have > started appearing, and you > have had them all excised, not the bit before they > start appearing). > > In other words, after a period of active disease, > and you have all tumors > removed, then you have a period of no active > disease.???? > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 11, 2002 Report Share Posted August 11, 2002 A better question may be, has ANYBODY had " all tumors removed " after they had first appeared? If this has happened, I'd bet it's someone that's only dealing with head or spinal tumors, but not both! I guess it's just my scans over the years, but I can't imagine " getting them all out " and then still being alive to tell about it! Anyhow, I think the description of " active disease " when speaking of a tumor means that the tumor is currently inflicting damage to healthy tissue/nerves and compromising function, and perhaps on a path to do even more. Rosemary Lee wrote: > Actually ,here is another way of asking about the seeding/mets question. > Last week oncology described Louis' tumor as evidence of 'active disease'. > > My question to crew>>>>>> has anybody had any periods with no > tumors??????(of course I mean after tumors have started appearing, and you > have had them all excised, not the bit before they start appearing). > > In other words, after a period of active disease, and you have all tumors > removed, then you have a period of no active disease.???? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 12, 2002 Report Share Posted August 12, 2002 Damn, shows you what a mindset does...I am wandering around thinking does Nf2 metastasise, and that is how I interpreted him.... Hate to say it, but I still think I might be right though. > A better question may be, has ANYBODY had " all tumors removed " after they had > first appeared? If this has happened, I'd bet it's someone that's only > dealing > with head or spinal tumors, but not both! I guess it's just my scans over the > years, but I can't imagine " getting them all out " and then still being alive > to > tell about it! Anyhow, I think the description of " active disease " when > speaking of a tumor means that the tumor is currently inflicting damage to > healthy tissue/nerves and compromising function, and perhaps on a path to do > even more. > > Rosemary Lee wrote: > >> Actually ,here is another way of asking about the seeding/mets question. >> Last week oncology described Louis' tumor as evidence of 'active disease'. >> >> My question to crew>>>>>> has anybody had any periods with no >> tumors??????(of course I mean after tumors have started appearing, and you >> have had them all excised, not the bit before they start appearing). >> >> In other words, after a period of active disease, and you have all tumors >> removed, then you have a period of no active disease.???? > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 12, 2002 Report Share Posted August 12, 2002 My husband, 62, had thyroid cancer at 19. Diagnosed with NF2 at 57 on either side of his cochlear and brainstem, we went nuts thinking, the big C. retrospect, he wouldn't have decided to have the largest removed because of all of the side effects now, but Virginia Mason Dr.s told us NF isn't malignant. ??? My husbands wasn't, but had we any way of knowing that before surgery, he wouldn't have had the tumor removed. Darmcy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 12, 2002 Report Share Posted August 12, 2002 My husband, 62, had thyroid cancer at 19. Diagnosed with NF2 at 57 on either side of his cochlear and brainstem, we went nuts thinking, the big C. retrospect, he wouldn't have decided to have the largest removed because of all of the side effects now, but Virginia Mason Dr.s told us NF isn't malignant. ??? My husbands wasn't, but had we any way of knowing that before surgery, he wouldn't have had the tumor removed. Darmcy My husband, 62, had thyroid cancer at 19. Diagnosed with NF2 at 57 on either side of his cochlear and brainstem, we went nuts thinking, the big C. retrospect, he wouldn't have decided to have the largest removed because of all of the side effects now, but Virginia Mason Dr.s told us NF isn't malignant. ??? My husbands wasn't, but had we any way of knowing that before surgery, he wouldn't have had the tumor removed. Darmcy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 12, 2002 Report Share Posted August 12, 2002 Subject: <no subject> My MRI's are reviewed by a local NSurgeon and the group at HEI annually.My left AN was removed by HEI in FEB '97 and still no sign of it. My NS here was very gung ho the first few years , to follow it , he has a hard time believing they have successfully removed it, as he puts it " they don't have a monopoly on this disease. " But its doing well, touch wood, nothing there in Feb this year either. Sheryn ________________________________________ > My question to crew>>>>>> has anybody had any periods with no > tumors??????(of course I mean after tumors have started appearing, and you > have had them all excised, not the bit before they start appearing). > > In other words, after a period of active disease, and you have all tumors > removed, then you have a period of no active disease.???? > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 12, 2002 Report Share Posted August 12, 2002 --- Sheryn wrote: > Subject: <no subject> > > My MRI's are reviewed by a local NSurgeon and the > group at HEI annually.My > left AN was removed by HEI in FEB '97 and still no > sign of it. My NS here > was very gung ho the first few years , to follow it > , he has a hard time > believing they have successfully removed it, as he > puts it " they don't have > a monopoly on this disease. " But its doing well, > touch wood, nothing there > in Feb this year either. > Sheryn > ________________________________________ > > > > My question to crew>>>>>> has anybody had any > periods with no > > tumors??????(of course I mean after tumors have > started appearing, and > you > > have had them all excised, not the bit before they > start appearing). > > > > In other words, after a period of active disease, > and you have all tumors > > removed, then you have a period of no active > disease.???? > > > > > >Hi! I'm sooo.. happy for you Sheryn! You good news is like music to one's (ears!?) Hmn.. Re: No active disease; Who really knows what 'active' is unless one can have a total body MRI. But then, there still would be that chromsome 22 anomaly. Have a good eve all! Russ > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 12, 2002 Report Share Posted August 12, 2002 But Sheryn, are you saying you have NO tumours ANYWHERE???? You have dealt with them all, and you are TUMOR-FREE. This is what I was asking. > Subject: <no subject> > > My MRI's are reviewed by a local NSurgeon and the group at HEI annually.My > left AN was removed by HEI in FEB '97 and still no sign of it. My NS here > was very gung ho the first few years , to follow it , he has a hard time > believing they have successfully removed it, as he puts it " they don't have > a monopoly on this disease. " But its doing well, touch wood, nothing there > in Feb this year either. > Sheryn > ________________________________________ > > >> My question to crew>>>>>> has anybody had any periods with no >> tumors??????(of course I mean after tumors have started appearing, and > you >> have had them all excised, not the bit before they start appearing). >> >> In other words, after a period of active disease, and you have all tumors >> removed, then you have a period of no active disease.???? >> >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 13, 2002 Report Share Posted August 13, 2002 Subject: Re: <no subject> OH No, Sorry Rosemary, I thought you meant none that had returned yet. I have one in the lower brainstem, several around my neck, most quite large, many in the head and spine, like many crewbies. Sheryn ___________________ > But Sheryn, are you saying you have NO tumours ANYWHERE???? You have dealt > with them all, and you are TUMOR-FREE. This is what I was asking. > > > > Subject: <no subject> > > > > My MRI's are reviewed by a local NSurgeon and the group at HEI annually.My > > left AN was removed by HEI in FEB '97 and still no sign of it. My NS here > > was very gung ho the first few years , to follow it , he has a hard time > > believing they have successfully removed it, as he puts it " they don't have > > a monopoly on this disease. " But its doing well, touch wood, nothing there > > in Feb this year either. > > Sheryn > > ________________________________________ > > > > > >> My question to crew>>>>>> has anybody had any periods with no > >> tumors??????(of course I mean after tumors have started appearing, and > > you > >> have had them all excised, not the bit before they start appearing). > >> > >> In other words, after a period of active disease, and you have all tumors > >> removed, then you have a period of no active disease.???? > >> > >> > >> Quote Link to comment Share on other sites More sharing options...
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