Guest guest Posted July 9, 2002 Report Share Posted July 9, 2002 Read your post with interest. We are considering Temodar, too, but awaiting info on some other drugs from the geneticist. It does have significant side-effects. Anne, my daughter, has several spinal tumors but the one in the lumbar (1 year ago at 4.8cm in the cord) is affecting her walking and some bladder. So we are scurrying for alternatives. Let's keep informed together and perhaps we can beat this thing 'cuz I'm sure the results of the surgery have you feeling as I do, rather dumpy. Vicki Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 9, 2002 Report Share Posted July 9, 2002 Vicki Lets talk tumour in spine affecting walking where in the spine? I am affected severly. I have trouble walking Test leg strength. The bladder problem is what????????? Mine will not empty. Learn to go to washroom at certain times. Regardless of anything else, establish habit Learn to wear those grownup diapers. Embarrassing, yes but not as bad as wetting yourself. I do not take any drugs. I learn to cope with pain and discomfort. Drugs ruined to much of my body. Randy Re: Temodar/Elaine > Read your post with interest. We are considering Temodar, too, but awaiting > info on some other drugs from the geneticist. It does have significant > side-effects. Anne, my daughter, has several spinal tumors but the one in > the lumbar (1 year ago at 4.8cm in the cord) is affecting her walking and > some bladder. So we are scurrying for alternatives. Let's keep informed > together and perhaps we can beat this thing 'cuz I'm sure the results of the > surgery have you feeling as I do, rather dumpy. > > Vicki > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 10, 2002 Report Share Posted July 10, 2002 Vicki We went to the surgeon yesterday to have the sutures out and he is suggesting proton beam. His reasoning is if that if the chemo doesn't work and the tumor grows he will have to debulk again before we can try the beam.........Our neurologist is not for radiation......we're just going to sit tight and see what happens after they conference.... The pro side of the temador is that if it works it should work on all the tumors....done side are the side effects....... Proton has pros.too.........localizing the treatment...... just waiting for now...............Elaine Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 10, 2002 Report Share Posted July 10, 2002 Randy, Boy are you right about those drugs Keep up the good work >.. Re: Temodar/Elaine > > > > Read your post with interest. We are considering Temodar, too, but > awaiting > > info on some other drugs from the geneticist. It does have significant > > side-effects. Anne, my daughter, has several spinal tumors but the one in > > the lumbar (1 year ago at 4.8cm in the cord) is affecting her walking and > > some bladder. So we are scurrying for alternatives. Let's keep informed > > together and perhaps we can beat this thing 'cuz I'm sure the results of > the > > surgery have you feeling as I do, rather dumpy. > > > > Vicki > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 10, 2002 Report Share Posted July 10, 2002 Elaine, I am not familiar with Proton Beam. Who is the doc and where will this be done if you choose it? Waiting is tough isn't it? Let's hope we can get to the core of this stuff very soon. vicki Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 10, 2002 Report Share Posted July 10, 2002 Randy, The tumor affecting Anne's walking is in the lumbar spine L1-2. She has multiple other spine tumors but we think it is that one. She has lots of swelling in her ankles and legs. She has lost the flixibility and the bend of her ankles. But she gets around soso. I think she has occasional leakage but otherwise bladder is good. She has no pain from the spine tumors. I, on the other had, have severe scoliosis, no NF, and have lots of pain and nerve involvement in my whole body with sciatica, burning and numbness in legs, spine very weak. It is the pits. I do not like to take meds either but I've had to take muscle relaxant and lots of Advil. I find the pool is very helpful if I can find the time. Thanks, Randy, for your interest. I love this group. It is the best for immediate answers to h ealth challenges. Have a good day. Good night. Vicki Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 11, 2002 Report Share Posted July 11, 2002 vicki We go to Mass. General Hospital in Boston for all NF2 treatment. Elaine Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 11, 2002 Report Share Posted July 11, 2002 Vicki Check upper thighs for tumours. If it is only one leg this may be the place to look I had to have one removed from high up in my inner thigh on my left leg and it helped. Recovery is more complicated than you would think I did surgery, went home, next day had to change door on car, between kneeling and strain on muscles had problems I had to go to hospital every day for a month. The incision had to heal from the inside out so they had to keep it open at all times. It was annoying. If tumour is in back it is important to remember that go as long as possible before operation. Second thing, when at doctors ask about tumours. Are they individual for each vertebrae or are they one continuous? Mine are individual for each vertebrae so I am lucky. Easier to pinpoint, treat, operate Keep in touch Randy Re: Temodar/Elaine > Randy, > The tumor affecting Anne's walking is in the lumbar spine L1-2. She has > multiple other spine tumors but we think it is that one. She has lots of > swelling in her ankles and legs. She has lost the flixibility and the bend > of her ankles. But she gets around soso. I think she has occasional leakage > but otherwise bladder is good. She has no pain from the spine tumors. I, on > the other had, have severe scoliosis, no NF, and have lots of pain and nerve > involvement in my whole body with sciatica, burning and numbness in legs, > spine very weak. It is the pits. I do not like to take meds either but I've > had to take muscle relaxant and lots of Advil. I find the pool is very > helpful if I can find the time. Thanks, Randy, for your interest. I love > this group. It is the best for immediate answers to h ealth challenges. > Have a good day. Good night. Vicki > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 11, 2002 Report Share Posted July 11, 2002 Vicki, You mentioned you had burning. Just this past week I have had a horrible burning sensation in my left calf and lower back. I was at the gym doing squats and I fell with the weights. I think this may have something to do with my burning. It is getting better but It sure makes me walk worse since I have drop foot in my left foot. I am hoping it is not NF related. Re: Temodar/Elaine Vicki Check upper thighs for tumours. If it is only one leg this may be the place to look I had to have one removed from high up in my inner thigh on my left leg and it helped. Recovery is more complicated than you would think I did surgery, went home, next day had to change door on car, between kneeling and strain on muscles had problems I had to go to hospital every day for a month. The incision had to heal from the inside out so they had to keep it open at all times. It was annoying. If tumour is in back it is important to remember that go as long as possible before operation. Second thing, when at doctors ask about tumours. Are they individual for each vertebrae or are they one continuous? Mine are individual for each vertebrae so I am lucky. Easier to pinpoint, treat, operate Keep in touch Randy Re: Temodar/Elaine > Randy, > The tumor affecting Anne's walking is in the lumbar spine L1-2. She has > multiple other spine tumors but we think it is that one. She has lots of > swelling in her ankles and legs. She has lost the flixibility and the bend > of her ankles. But she gets around soso. I think she has occasional leakage > but otherwise bladder is good. She has no pain from the spine tumors. I, on > the other had, have severe scoliosis, no NF, and have lots of pain and nerve > involvement in my whole body with sciatica, burning and numbness in legs, > spine very weak. It is the pits. I do not like to take meds either but I've > had to take muscle relaxant and lots of Advil. I find the pool is very > helpful if I can find the time. Thanks, Randy, for your interest. I love > this group. It is the best for immediate answers to h ealth challenges. > Have a good day. Good night. Vicki > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 11, 2002 Report Share Posted July 11, 2002 Proton Beam is only done at Harvard/mass Gen or Loma Linde in California. Marie Re: Temodar/Elaine > Elaine, > I am not familiar with Proton Beam. Who is the doc and where will this be > done if you choose it? Waiting is tough isn't it? Let's hope we can get to > the core of this stuff very soon. vicki > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 12, 2002 Report Share Posted July 12, 2002 Proton beam is very expensive, and that is why there are only two centers. Don't hold me on this, but I think a lot has to do with the fact that the beam/protons whatever, STOP at the tumor site, and do not " go through " and thereby cause possible damage in more tissue. Jay Loeffler is the man at Harvard/MGH. Marie Re: Temodar/Elaine > > > > > >> Elaine, > >> I am not familiar with Proton Beam. Who is the doc and where will > >> this be > >> done if you choose it? Waiting is tough isn't it? Let's hope we can > >> get > > to > >> the core of this stuff very soon. vicki > >> > >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 12, 2002 Report Share Posted July 12, 2002 Marie what is a proton beam? Lois Re: Temodar/Elaine > > > > Elaine, > > I am not familiar with Proton Beam. Who is the doc and where will this be > > done if you choose it? Waiting is tough isn't it? Let's hope we can get > to > > the core of this stuff very soon. vicki > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 12, 2002 Report Share Posted July 12, 2002 Hi Rosemary,Did you ever Recive the information I sent to you on the 2 inhibotrs and lovastatin combination ?I sent it to you snail mail a few weeks ago .Please let me know ?Tev Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 12, 2002 Report Share Posted July 12, 2002 Well it is another form of radiation/radiotherapy; very expensive. Has been around for a long time, but do to the cost, not that common. I am no chemist/phyicist, but I think it uses protons, where as the other radiotherapy use ?? It is non-invasive of course. I think the main deal is the protons stop at the tumor, rather than continuing on thru and exiting out the other side. Pls don't quote me here, I am far from an expert. I know of two people on the Crew who had proton beam YEARS ago. One did very well, one did not do well at all. Marie Re: Temodar/Elaine > > > > > > > Elaine, > > > I am not familiar with Proton Beam. Who is the doc and where will this > be > > > done if you choose it? Waiting is tough isn't it? Let's hope we can > get > > to > > > the core of this stuff very soon. vicki > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 13, 2002 Report Share Posted July 13, 2002 hi tev, just back. i wrote back to you this morning to what i thought was your address..and got a mail undelivered ...have a new computer, can you write me privately and i will save your address and write back. rosemary. > Hi Rosemary,Did you ever Recive the information I sent to you on the > 2 > inhibotrs and lovastatin combination ?I sent it to you snail mail a few > weeks ago .Please let me know ?Tev > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 13, 2002 Report Share Posted July 13, 2002 thanks Marie, but why did one not do so well?/ did the tumor grow back, did they have side effects from therapy?proton beam was mentioned to me as an option. but considering they are now saying that this tumro has always been there(!!!!!!!!!) not picked up in about 8mri's......we are sitting tight for a bit. am very appreciative of all your radiation info. I am very ignorant on this, and we may well have to go that way, so i do need to learn . will contact that person when the time comes. but my brain does not retain info for too long, so best wait. > Well it is another form of radiation/radiotherapy; very expensive. Has > been > around for a long time, but do to the cost, not that common. I am no > chemist/phyicist, but I think it uses protons, where as the other > radiotherapy use ?? > It is non-invasive of course. I think the main deal is the protons > stop at > the tumor, rather than continuing on thru and exiting out the other > side. > Pls don't quote me here, I am far from an expert. I know of two people > on > the Crew who had proton beam YEARS ago. One did very well, one did not > do > well at all. Marie > Re: Temodar/Elaine >>> >>> >>>> Elaine, >>>> I am not familiar with Proton Beam. Who is the doc and where will > this >> be >>>> done if you choose it? Waiting is tough isn't it? Let's hope we can >> get >>> to >>>> the core of this stuff very soon. vicki >>>> >>>> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 13, 2002 Report Share Posted July 13, 2002 Jennette Braaten is the person who had a bad response; VERY bad. Jim Heath is the person who did well; tho he is now deaf, he has never had ANY surgery; Jen's Mom is a nurse and not dumb. She had severe reaction several months after treatment; I am not sure of details and hate to give you wrong info, but I am sure she would be happy to provide details. But again this was a long time ago. Marie Re: Temodar/Elaine > >>> > >>> > >>>> Elaine, > >>>> I am not familiar with Proton Beam. Who is the doc and where will > > this > >> be > >>>> done if you choose it? Waiting is tough isn't it? Let's hope we can > >> get > >>> to > >>>> the core of this stuff very soon. vicki > >>>> > >>>> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 13, 2002 Report Share Posted July 13, 2002 Yes, it was a very long time ago, Marie, Feb.1984. I had the same doctor Jim had, I think Helen M., maybe one of the Skyer girls too (not sure?!) also had proton. Jim was the only one of us with success. I believe we all, except Jim had to have the tumors removed the conventional way, as well as deal with the aftermath. Numerous problems " kicked in " (in a matter of minutes) 6 months after the radiation and never went away. The proton made it a very difficult removal as well, which I think is when HEI became very anti-radiation. They had the honors of cleaning up the mess. I was their first a.n. to have been radiated I think. But again this was many many years ago and I'm sure doses have changed alot. My understanding is proton is a huge one target dose too. I saw Boston when I could still walk though. Jennette ----- Original Message ----- Jennette Braaten is the person who had a bad response; VERY bad. Jim Heath is the person who did well; tho he is now deaf, he has never had ANY surgery; Jen's Mom is a nurse and not dumb. She had severe reaction several months after treatment; I am not sure of details and hate to give you wrong info, but I am sure she would be happy to provide details. But again this was a long time ago. Marie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 14, 2002 Report Share Posted July 14, 2002 I recall seeing the web site of a place in Cleveland that did all RS.... including Proton Beam. Re: Temodar/Elaine > > > > Elaine, > > I am not familiar with Proton Beam. Who is the doc and where will this be > > done if you choose it? Waiting is tough isn't it? Let's hope we can get > to > > the core of this stuff very soon. vicki > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 14, 2002 Report Share Posted July 14, 2002 I think the late Helen Mendelsohn also had proton beam with results being not favorable. Did you know that GK was originally designed to use proton beams instead of gamma rays? The problem was that protons would make to machine to difficult and expensive to produce. If things went as planned, we may have had the Proton Knife (PK)! Re: Temodar/Elaine > > >>> > > >>> > > >>>> Elaine, > > >>>> I am not familiar with Proton Beam. Who is the doc and where will > > > this > > >> be > > >>>> done if you choose it? Waiting is tough isn't it? Let's hope we can > > >> get > > >>> to > > >>>> the core of this stuff very soon. vicki > > >>>> > > >>>> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 14, 2002 Report Share Posted July 14, 2002 Well that would be Cleveland Clinic, they do three types of radiosurgery, but I did not think Proton Beam was one of them; however, I would be interested if someone finds it really is available there? marie Re: Temodar/Elaine > > > > > > > Elaine, > > > I am not familiar with Proton Beam. Who is the doc and where will this > be > > > done if you choose it? Waiting is tough isn't it? Let's hope we can > get > > to > > > the core of this stuff very soon. vicki > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 15, 2002 Report Share Posted July 15, 2002 Jennette, can you tell me what wer the post radiation problems? And has anybody used the proton beam more recently? How long ago did Helen Mendelsohn use it? and what was her outcome from the radiation? on 7/14/02 8:55 AM, Jennette Braaten at jennette@... wrote: > Yes, it was a very long time ago, Marie, Feb.1984. I had the same doctor Jim > had, I think Helen M., maybe one of the Skyer girls too (not sure?!) also > had proton. Jim was the only one of us with success. I believe we all, > except Jim had to have the tumors removed the conventional way, as well as > deal with the aftermath. Numerous problems " kicked in " (in a matter of > minutes) 6 months after the radiation and never went away. The proton made > it a very difficult removal as well, which I think is when HEI became very > anti-radiation. They had the honors of cleaning up the mess. I was their > first a.n. to have been radiated I think. But again this was many many years > ago and I'm sure doses have changed alot. My understanding is proton is a > huge one target dose too. > > I saw Boston when I could still walk though. > > Jennette > > ----- Original Message ----- > > > Jennette Braaten is the person who had a bad response; VERY bad. Jim Heath > is the person who did well; tho he is now deaf, he has never had ANY > surgery; Jen's Mom is a nurse and not dumb. She had severe reaction several > months after treatment; I am not sure of details and hate to give you wrong > info, but I am sure she would be happy to provide details. But again this > was a long time ago. Marie > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 16, 2002 Report Share Posted July 16, 2002 helen M and mary (??) skyer both died, not directly from what you are talking about, jus the whole nf2 things. wow jenn, I didnt realize you had those probs. Jennette, can you tell me what wer the post radiation problems? And has > anybody used the proton beam more recently? How long ago did Helen > Mendelsohn use it? and what was her outcome from the radiation? > > on 7/14/02 8:55 AM, Jennette Braaten at jennette@... wrote: > > > Yes, it was a very long time ago, Marie, Feb.1984. I had the same doctor Jim > > had, I think Helen M., maybe one of the Skyer girls too (not sure?!) also > > had proton. Jim was the only one of us with success. I believe we all, > > except Jim had to have the tumors removed the conventional way, as well as > > deal with the aftermath. Numerous problems " kicked in " (in a matter of > > minutes) 6 months after the radiation and never went away. The proton made > > it a very difficult removal as well, which I think is when HEI became very > > anti-radiation. They had the honors of cleaning up the mess. I was their > > first a.n. to have been radiated I think. But again this was many many years > > ago and I'm sure doses have changed alot. My understanding is proton is a > > huge one target dose too. > > > > I saw Boston when I could still walk though. > > > > Jennette > > > > ----- Original Message ----- > > > > > > Jennette Braaten is the person who had a bad response; VERY bad. Jim Heath > > is the person who did well; tho he is now deaf, he has never had ANY > > surgery; Jen's Mom is a nurse and not dumb. She had severe reaction several > > months after treatment; I am not sure of details and hate to give you wrong > > info, but I am sure she would be happy to provide details. But again this > > was a long time ago. Marie > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 16, 2002 Report Share Posted July 16, 2002 Mar\\y Skyer died ?? When? Wow! I knew Maureen did (one of the first " 2's " I ever met)... but thought and were still alive. doing How is Rick doing? Re: Temodar/Elaine helen M and mary (??) skyer both died, not directly from what you are talking about, jus the whole nf2 things. wow jenn, I didnt realize you had those probs. Quote Link to comment Share on other sites More sharing options...
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