Guest guest Posted May 25, 1999 Report Share Posted May 25, 1999 Hey Sandi, Tell Dr. DeSalles I said 'hello'. Also if you meet , Rueben, or , tell them I said 'hello' as well. I recently had the X Knife done at UCLA also and it seems to be working so far. Mark ----Original Message Follows---- From: Sandfarms@... Reply-To: NF2_Crewonelist To: NF2_Crewonelist Subject: radiation Date: Tue, 25 May 1999 11:15:21 EDT From: Sandfarms@... Hi guys! Sorry I can't remember who asked about radiation, I accidentally deleted the message. It was I think? Anyway, as some of you already know I'll be leaving for L.A. next week for 5 weeks of radiation treatments for my left AN. Dr. DeSalles at UCLA is supposed to be cutting edge, and I went to him specifically for the reason that he treats tumors traditionally thought of as too large, which is over 3 cm I think. (I don't know my AN's exact size, just that it's bigger than my eyeballs. <g>) Anyway, I would highly recommend the UCLA radiation/oncology department for anyone considering this option, regardless of tumor size. Even my neurosurgeon had good things to say about them! Sandi ------------------------------------------------------------------------ ONElist: bringing the world together. http://www.onelist.com Join a new list today! _______________________________________________________________ Get Free Email and Do More On The Web. Visit http://www.msn.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 25, 1999 Report Share Posted May 25, 1999 In a message dated 5/25/99 7:35:49 PM Central Daylight Time, mcdrew@... writes: > Can I ask if this is your first AN or if you are deaf on the other side ? I > am > deaf on one side, and have a 2-3 cm tumor on other; only thing that keeps me > from > radiation is wanting to have the ABI. Marie > I'm deaf as a stone and not even considering the ABI, so this looks pretty darn good to me. :-) Sandi Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 25, 1999 Report Share Posted May 25, 1999 Can I ask if this is your first AN or if you are deaf on the other side ? I am deaf on one side, and have a 2-3 cm tumor on other; only thing that keeps me from radiation is wanting to have the ABI. Marie Sandfarms@... wrote: > From: Sandfarms@... > > Hi guys! > > Sorry I can't remember who asked about radiation, I accidentally deleted the > message. It was I think? Anyway, as some of you already know I'll > be leaving for L.A. next week for 5 weeks of radiation treatments for my left > AN. Dr. DeSalles at UCLA is supposed to be cutting edge, and I went to him > specifically for the reason that he treats tumors traditionally thought of as > too large, which is over 3 cm I think. (I don't know my AN's exact size, > just that it's bigger than my eyeballs. <g>) Anyway, I would highly > recommend the UCLA radiation/oncology department for anyone considering this > option, regardless of tumor size. Even my neurosurgeon had good things to > say about them! > > Sandi > > ------------------------------------------------------------------------ > ONElist: bringing the world together. > http://www.onelist.com > Join a new list today! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 25, 1999 Report Share Posted May 25, 1999 Sandy, It was me who asked about the treatment...and I'm curious about the treatment you are having for your AN. Is the goal with radiation with a larger AN to preserve some hearing? Or is the goal just to be not as invasive as the surgery? Better question (smile), how did you decide to do the radiation vs. surgery? Craig also has a larger AN left on his left side, and we've never known about the idea of removing it other than surgically- his hearing is deteriorating on that side, and he has no hearing on his right side. I'd welcome any comments from your experience, and wish you well during your treatment. Where are you coming from to LA? I'm here in the northern LA area (Thousand Oaks). Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 26, 1999 Report Share Posted May 26, 1999 Whoa Sandi, you're just like I am. I guess I burned the bridge to have an ABI when I chose radiation on the other AN also. Do you know how to Sign or even fingerspell? If not, how do you communicate with others? Mark ----Original Message Follows---- From: Sandfarms@... I'm deaf as a stone and not even considering the ABI, so this looks pretty darn good to me. :-) Sandi ------------------------------------------------------------------------ How many communities do you think join ONElist each day? http://www.onelist.com More than 1,000! Create yours now! _______________________________________________________________ Get Free Email and Do More On The Web. Visit http://www.msn.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 26, 1999 Report Share Posted May 26, 1999 Hey Sandi, Whoa, I got the samething with Dr. DeSalles but it was over a 7week period? Mark ----Original Message Follows---- From: Sandfarms@... Reply-To: NF2_Crewonelist To: NF2_Crewonelist Subject: Re: radiation Date: Wed, 26 May 1999 09:57:06 EDT From: Sandfarms@... , I'm using radiation to avoid surgery. The chance of side ieffects (affecting balance, facial nerve, etc.) is about one percent or less and with surgery that's much hgher. I have no hearing left, so I suppose that made my choice a little simpler. I do know that DeSalles and the radiation team at UCLA are exceedingly approachable, and if you wanted to just send them some scans and get their opinion, they'd be very helpful. If anyone would like that phone number or address, I can send that privately. I'll be having 25 small doses of radiation over a 5 week period, as opposed to proton beam, which is one big " zap " . :-) The hope is to kill the tumor so that it never grows again. It'll always be there, just dead. Good luck, Sandi ------------------------------------------------------------------------ ONElist: where the world talks! http://www.onelist.com Join a new list today. _______________________________________________________________ Get Free Email and Do More On The Web. Visit http://www.msn.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 26, 1999 Report Share Posted May 26, 1999 , I'm using radiation to avoid surgery. The chance of side ieffects (affecting balance, facial nerve, etc.) is about one percent or less and with surgery that's much hgher. I have no hearing left, so I suppose that made my choice a little simpler. I do know that DeSalles and the radiation team at UCLA are exceedingly approachable, and if you wanted to just send them some scans and get their opinion, they'd be very helpful. If anyone would like that phone number or address, I can send that privately. I'll be having 25 small doses of radiation over a 5 week period, as opposed to proton beam, which is one big " zap " . :-) The hope is to kill the tumor so that it never grows again. It'll always be there, just dead. Good luck, Sandi Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 26, 1999 Report Share Posted May 26, 1999 In a message dated 5/26/99 10:50:51 AM Central Daylight Time, mark_sarmac@... writes: > Do you know how to Sign or even fingerspell? If not, how do you communicate > with others? > I can sign and I read lips very well. People I spend a great deal of time with are very easy for me to lipread, so I guess I'm lucky in that respect. The joke around here is that my husband has big lips that are easy to read. har har If I'm out in public (which isn't often, I've always been something of a hermit) I try to read lips or make them write it down. Sandi Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 26, 1999 Report Share Posted May 26, 1999 In a message dated 5/26/99 11:16:37 AM Central Daylight Time, mark_sarmac@... writes: > Whoa, I got the samething with Dr. DeSalles but it was over a 7week period? > ??? You got me, Mark. <g> No idea what the difference is. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 26, 1999 Report Share Posted May 26, 1999 Kim, Dr. De Salles uses the Novalis system that you mentioned Houston wants. I know of one other person who has preserved hearing with this (in fact he used De Salles), but he is recently no longer a member of the Crew. Maybe proton beam can be fractionated, I don't know. All I know is they mentioned it to me as a single dose, and I am trying to preserve facial movement on that side and the risks of paralysis were much greater with single dose. So I rather quickly dismissed it. Sandi Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 26, 1999 Report Share Posted May 26, 1999 Kim, Preservation of the hearing has to do with the size of the tumor also. The smaller it is, the more chance that hearing will be saved. I'm not sure of any other radiation procedures out there but Dr. DeSalles at UCLA gave me radiation therapy for 7 weeks. Positron radiation sounds like the Gamma knife radiation because when I had that, it only took like a couple of hours. But, don't quote me on that though. Gamma Knife maybe totally different from positron. Mark ----Original Message Follows---- Reply-To: NF2_Crewonelist To: NF2_Crewonelist Subject: Re: radiation Date: Wed, 26 May 1999 11:07:50 -0700 (PDT) This has been interesting, Sandi. I wonder if anyone on here besides me has preserved hearing with radiation? I am sure someone has I just can't remember now and maybe my results were different because 1. I did mine before I had lost any hearing and 2. my AN was very small. Also, what technology/system is your guy using? Proton is only single dose as a norm? I thought you could get it in fractionated doses too? I feel like I am getting behind in the old radiation arena. Thanks! Good luck, Kim _________________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 26, 1999 Report Share Posted May 26, 1999 Hi , I had radiation therapy done to me the first time when I was 22 and I didn't have any side effects. The reason why I had it was because it was invasive like Sandi pointed out. Another good reason that Sandi pointed out was that it preserved my facial nerve. I guess the thing that totally scared me was someone cracking my head open and taking the AN out. It's up to you though, whatever you choose is your choice. Mark ----Original Message Follows---- From: Misha64@... Reply-To: NF2_Crewonelist To: NF2_Crewonelist Subject: Re: radiation Date: Wed, 26 May 1999 17:20:20 EDT From: Misha64@... Crew, Okay now I have a quick question. I looked into radiotherapy too, but I decided against it because of my age. I'm only 21, and I have the BI AN, and tumors on the spine, all the " usual stuff. " I read Kim's transcripts, talked with three different DR's and they all did say that since I am so young, I should be a little hesitant with this. Obviously there is always a chance that tumors will come back with any type of treatment, but all of the DR's (some were DR's in this field) said that the scar tissue left from radiotherapy is much harder to deal with then invasive surgery. Basically if I was 40 or older I would have jumped on Gamma Knife, Proton Beam or Peacock (and whatever else is out there). I'm just so hesitant that the end effects of radiation will be more damaging than anything. I'm not looking to preserve hearing because that's all but gone now anyway, but I would like to keep my face. Anyway has any DR's ever told any of you about the age factor??? in BLISTERING 99 DEGREES AZ ------------------------------------------------------------------------ Campaign 2000 is here! http://www.onelist.com Discuss your thoughts; get informed at ONElist. See our homepage. _______________________________________________________________ Get Free Email and Do More On The Web. Visit http://www.msn.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 26, 1999 Report Share Posted May 26, 1999 Crew, Okay now I have a quick question. I looked into radiotherapy too, but I decided against it because of my age. I'm only 21, and I have the BI AN, and tumors on the spine, all the " usual stuff. " I read Kim's transcripts, talked with three different DR's and they all did say that since I am so young, I should be a little hesitant with this. Obviously there is always a chance that tumors will come back with any type of treatment, but all of the DR's (some were DR's in this field) said that the scar tissue left from radiotherapy is much harder to deal with then invasive surgery. Basically if I was 40 or older I would have jumped on Gamma Knife, Proton Beam or Peacock (and whatever else is out there). I'm just so hesitant that the end effects of radiation will be more damaging than anything. I'm not looking to preserve hearing because that's all but gone now anyway, but I would like to keep my face. Anyway has any DR's ever told any of you about the age factor??? in BLISTERING 99 DEGREES AZ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 26, 1999 Report Share Posted May 26, 1999 This has been interesting, Sandi. I wonder if anyone on here besides me has preserved hearing with radiation? I am sure someone has I just can't remember now and maybe my results were different because 1. I did mine before I had lost any hearing and 2. my AN was very small. Also, what technology/system is your guy using? Proton is only single dose as a norm? I thought you could get it in fractionated doses too? I feel like I am getting behind in the old radiation arena. Thanks! Good luck, Kim _________________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 26, 1999 Report Share Posted May 26, 1999 Sandi, One more question! So Novalis is the latest technology from NOMOS? That was what I was referring to but did not know the name. This is so educational! Also, I can certainly relate to your choice to go many treatments. That seems to be the standard approach for any nerve preservation. Good luck! Kim --- Sandfarms@... wrote: > From: Sandfarms@... > > Kim, > > Dr. De Salles uses the Novalis system that you mentioned Houston wants. I > know of one other person who has preserved hearing with this (in fact he used > De Salles), but he is recently no longer a member of the Crew. Maybe proton > beam can be fractionated, I don't know. All I know is they mentioned it to > me as a single dose, and I am trying to preserve facial movement on that side > and the risks of paralysis were much greater with single dose. So I rather > quickly dismissed it. > > Sandi _________________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 26, 1999 Report Share Posted May 26, 1999 Kim, Since we know that Reagan will probably get ANs, we want to catch them as soon as possible. Am I to understand that you successfully preserved your hearing by having radiation before the tumors grew too large? Have the tumors grown back? To what degree was the radiation a success? Thanks, Re: radiation > > >This has been interesting, Sandi. I wonder if anyone on here besides me has preserved hearing >with radiation? I am sure someone has I just can't remember now and maybe my results were >different because 1. I did mine before I had lost any hearing and 2. my AN was very small. Also, >what technology/system is your guy using? Proton is only single dose as a norm? I thought you >could get it in fractionated doses too? I feel like I am getting behind in the old radiation >arena. Thanks! > >Good luck, >Kim > >_________________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 27, 1999 Report Share Posted May 27, 1999 Donna, Do you still have to go get an MRI every six months though? Or do they discontinue that after like 9 years with no re-growth? Mark ----Original Message Follows---- From: DonnaHut@... From: DonnaHut@... Mark and Sandi, I did the same thing, I had me left AN treated by Gamma Knife in 1990, so no ABI! The good news? The tumor has not grown in 9 years! DonnaHut ------------------------------------------------------------------------ ONElist: where the world talks! http://www.onelist.com Join a new list today. _______________________________________________________________ Get Free Email and Do More On The Web. Visit http://www.msn.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 27, 1999 Report Share Posted May 27, 1999 Kim, Did I say Novalis? I meant NOMOS, where's my brain? <g> The equipment at UCLA is the very latest, so I have great hopes that this will work for me. Sandi Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 27, 1999 Report Share Posted May 27, 1999 Mark and Sandi, I did the same thing, I had me left AN treated by Gamma Knife in 1990, so no ABI! The good news? The tumor has not grown in 9 years! DonnaHut Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 27, 1999 Report Share Posted May 27, 1999 Thanks, Sandi! That is wonderful. Dr. Woo says the new technology blows what I had in 96 out of the water. I hope it gets here soon. Good luck and I am sure it will work for you. Kim --- Sandfarms@... wrote: > From: Sandfarms@... > > Kim, > > Did I say Novalis? I meant NOMOS, where's my brain? <g> The equipment at > UCLA is the very latest, so I have great hopes that this will work for me. _________________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 27, 1999 Report Share Posted May 27, 1999 Sandi, Thanks for the info. I'd like the address/phone number of the doctor if you have a chance to send it. No hurry. Thanks again and hope all goes well. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 28, 1999 Report Share Posted May 28, 1999 Hello Vicki, Since Sandi is going to Dr. DeSalles like I did his address is as follows: Antionio A.F. De Salles M.D, PH.D 300 UCLA Medical Plaza, Suite B212 Box 956975 Los Angeles, CA 90095-6975 Email: desalles@... Office Phone: FAX: or Good luck and I hope this information helps. Mark ----Original Message Follows---- From: VMTucker@... Reply-To: NF2_Crewonelist To: NF2_Crewonelist Subject: Re: radiation Date: Fri, 28 May 1999 01:44:52 EDT From: VMTucker@... Sandi, Thanks for the info. I'd like the address/phone number of the doctor if you have a chance to send it. No hurry. Thanks again and hope all goes well. ------------------------------------------------------------------------ ONElist: where the world talks! http://www.onelist.com Join a new list today. _______________________________________________________________ Get Free Email and Do More On The Web. Visit http://www.msn.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 30, 1999 Report Share Posted May 30, 1999 MARK, I AM " SUPPOSED " TO GET AN MRI ONCE A YEAR. I AM IN THE PROCESS OF CHANGING MY DOCTORS THOUGH, SO AM DUE! I HAD ONE LAST YEAR AND THEY TOLD ME THE SAME OLE " NO SIGNIFICANT CHANGES " ! DONNAHUT Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 25, 1999 Report Share Posted September 25, 1999 Uh well, from MY own experience Jeanette, I had GAmma Knife done to my right AN 3 years ago and it hasn't grown since. It actually has gone into necrosis (molecular death). There hasn't been any regrowth and many of my doctors highly doubt that it will regrow. Mark ----Original Message Follows---- Reply-To: NF2_Crewonelist To: " nf2 crew " <NF2_Crewonelist> Subject: radiation Date: Fri, 24 Sep 1999 22:33:32 -0400 I have been out of town for a week and am trying to wade through 300 emails that piled up while I was gone so forgive me if this was asked and answered already. I obviously have not gotten to it yet. Has anyone ever had radiation on a regrowth? Any complications if so? AND this I seriously doubt but will ask anyway... a regrowth of a tumor that was radiated once and then surgically removed because that radiation failed to stop it from growing? Basically how can radiation deal with enormous amounts of scar tissue? Jennette Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 28, 1999 Report Share Posted September 28, 1999 Hmmm??? Thought I sent this last night, but I don't see it in the mail. I'll try to remember what I wrote... Roscoe, I didn't mean to say oldest as in age because I'm only 35. I meant oldest as in " we did it when the gizmo was still a wee little baby from Sweden still. Um, if mine was in '84, that's 16 years come Feb I think. Then Jim was zapped 21 yrs ago. That's what I meant, and what I meant about the study too. How far back can we go in NF2 tumors, and what has happened to those people re: regrowths, successes, failures, etc. Jennette [Oregon] Quote Link to comment Share on other sites More sharing options...
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