Guest guest Posted October 5, 2000 Report Share Posted October 5, 2000 I've never had a consistant growth rate with tumors, I think that is why many of us are monitored regularly with MRI's. Recently I had an acoustic neuroma debulked in the first 6 months after surgery.. There was no change at all. In the second 6 months after surgery it had grown 2.5cm. In the 3rd 6 months the growth had dropped to .1 cm This kind of erratic growth seems to be the norm for all my tumors. I have some that haven't grown in years. Pete Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 28, 2000 Report Share Posted October 28, 2000 Hi vicki, Funny story about Sugen. When I was obsessing about that CAM's article (cell adhesion molecules), I took it to the hairdresser with me and finally understood it. Rationale being, I'm stuck in a chair for two hours and I'm just going to read and reread it till I get it. Came back and was all excited about cell transduction and a possible pathway of intervention that was very specific. Looked up cell transduction and found Sugen, probably leading the world in developing this kind of therapy (I " m guessing). So I emailed them and asked them how about developing something for us.... They have emailed back and have passed my suggestion on to their clinical trials person, which I can give you contact name and email. Later I went through the whole site and recognised a drug that B. lin had mentioned (I think Su154). Even later I note that a Sugen Representative was at the Aspen Nf2 meeting. So, yes, I think this drug has been developed with meningiomas in mind. Firstly, I'm not clear on what the pressing issues are with Anne at the moment. Is it spinal tumors, brain, or I have noted you have mentioned oncologists. If you give me some idea of which area is the immediate concern, I will happily spend tonight's evening on the net, seeing what I can find for you. It s just another pair of hands helping. There are millions of cancer trials, some meningioma trials, and I wonder if you could get Anne onto that trial of G. coming up in UK. a?? I m getting a sense of urgency from you and firmly believe you can ask to be included in trials if time is an issue. To check out Sugen, just type into a search, have a good look through their site. Also, Wistar Institute, have a look at them. I liked the look of where these two were heading . I don't know of any trials for specifically Nf2 (except the apoptic UK one coming up) tumors. that's what makes me so cross!!! rosemary. on 28/10/00 4:04 PM, vjpcook@... at vjpcook@... wrote: > Dear Crew Friends: > We are in the process of researching options for Anne. The neurologist is > really being helpful. She had some questions. Can anyone out there help? > > 1. What experience has anyone had with Dr. Riccardi as of late? How > reliable is his opinion? We saw him 13 years ago at Houston. Since we > haven't seen him. > > 2. Someone, I think it was Rosemary but I could be wrong, mentioned a drug > called Sugen. The doctor's medline search shows up no use in relation to NF > tumors. Other tumors yes. > > Thanks for your help. Vicki > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 28, 2000 Report Share Posted October 28, 2000 Hi vicki, Funny story about Sugen. When I was obsessing about that CAM's article (cell adhesion molecules), I took it to the hairdresser with me and finally understood it. Rationale being, I'm stuck in a chair for two hours and I'm just going to read and reread it till I get it. Came back and was all excited about cell transduction and a possible pathway of intervention that was very specific. Looked up cell transduction and found Sugen, probably leading the world in developing this kind of therapy (I " m guessing). So I emailed them and asked them how about developing something for us.... They have emailed back and have passed my suggestion on to their clinical trials person, which I can give you contact name and email. Later I went through the whole site and recognised a drug that B. lin had mentioned (I think Su154). Even later I note that a Sugen Representative was at the Aspen Nf2 meeting. So, yes, I think this drug has been developed with meningiomas in mind. Firstly, I'm not clear on what the pressing issues are with Anne at the moment. Is it spinal tumors, brain, or I have noted you have mentioned oncologists. If you give me some idea of which area is the immediate concern, I will happily spend tonight's evening on the net, seeing what I can find for you. It s just another pair of hands helping. There are millions of cancer trials, some meningioma trials, and I wonder if you could get Anne onto that trial of G. coming up in UK. a?? I m getting a sense of urgency from you and firmly believe you can ask to be included in trials if time is an issue. To check out Sugen, just type into a search, have a good look through their site. Also, Wistar Institute, have a look at them. I liked the look of where these two were heading . I don't know of any trials for specifically Nf2 (except the apoptic UK one coming up) tumors. that's what makes me so cross!!! rosemary. on 28/10/00 4:04 PM, vjpcook@... at vjpcook@... wrote: > Dear Crew Friends: > We are in the process of researching options for Anne. The neurologist is > really being helpful. She had some questions. Can anyone out there help? > > 1. What experience has anyone had with Dr. Riccardi as of late? How > reliable is his opinion? We saw him 13 years ago at Houston. Since we > haven't seen him. > > 2. Someone, I think it was Rosemary but I could be wrong, mentioned a drug > called Sugen. The doctor's medline search shows up no use in relation to NF > tumors. Other tumors yes. > > Thanks for your help. Vicki > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 28, 2000 Report Share Posted October 28, 2000 Dr Riccardi was a big name in NF at one time; I think I saw his name on research recently from NNFF or NF Inc. You might check with those organizations? marie Help >Dear Crew Friends: >We are in the process of researching options for Anne. The neurologist is >really being helpful. She had some questions. Can anyone out there help? > >1. What experience has anyone had with Dr. Riccardi as of late? How >reliable is his opinion? We saw him 13 years ago at Houston. Since we >haven't seen him. > >2. Someone, I think it was Rosemary but I could be wrong, mentioned a drug >called Sugen. The doctor's medline search shows up no use in relation to NF >tumors. Other tumors yes. > >Thanks for your help. Vicki > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 28, 2000 Report Share Posted October 28, 2000 Dr Riccardi was a big name in NF at one time; I think I saw his name on research recently from NNFF or NF Inc. You might check with those organizations? marie Help >Dear Crew Friends: >We are in the process of researching options for Anne. The neurologist is >really being helpful. She had some questions. Can anyone out there help? > >1. What experience has anyone had with Dr. Riccardi as of late? How >reliable is his opinion? We saw him 13 years ago at Houston. Since we >haven't seen him. > >2. Someone, I think it was Rosemary but I could be wrong, mentioned a drug >called Sugen. The doctor's medline search shows up no use in relation to NF >tumors. Other tumors yes. > >Thanks for your help. Vicki > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 28, 2000 Report Share Posted October 28, 2000 Dr Riccardi was a big name in NF at one time; I think I saw his name on research recently from NNFF or NF Inc. You might check with those organizations? marie Help >Dear Crew Friends: >We are in the process of researching options for Anne. The neurologist is >really being helpful. She had some questions. Can anyone out there help? > >1. What experience has anyone had with Dr. Riccardi as of late? How >reliable is his opinion? We saw him 13 years ago at Houston. Since we >haven't seen him. > >2. Someone, I think it was Rosemary but I could be wrong, mentioned a drug >called Sugen. The doctor's medline search shows up no use in relation to NF >tumors. Other tumors yes. > >Thanks for your help. Vicki > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 28, 2000 Report Share Posted October 28, 2000 Rosemary, Thanks for offering to do research in Anne's behalf. No, she does not have Cancer but when an experimental drug is being considered, oncology usually handles it because it requires protocol etc and because NF is tumors. I would say her most serious is in the lumbar spine, but this is a preliminary guess because the radiology comparative report of the last 4 years of MRI's hasn't been completed yet. You know, I looked at my little 16-month old grandson today and thought how terrific life was when we had no knowledge of NF in our life. So I say to you, if Louis's health is good, just enjoy the heck out of him. He is definitely God's gift to you and to this world. If you should find anything interesting on your Search, I will appreciate knowing. Thanks. Vicki Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 12, 2000 Report Share Posted December 12, 2000 I talked to him several times carol, the guy just sent me a few racey jokes:) He will have to be on social. Is he alright?? I just heard from him this morning.-Lori:) Help > Who was it that talked to Mike Mailahn about getting on the crew??....I > need to talk to you soon as possible...Please e-mail me! or call me > > Carol > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 18, 2001 Report Share Posted January 18, 2001 Hi Tim, My daughter was diagnosed at the age of 11 two years ago. Since then she has had surgery to remove 1 AN. It was a success in every way. To be honest I think at her level and luck it is easier to live with than a newly become teenager. I can only advise that you do the research and know what you are dealing with. Don't close any doors. You have come to an outstanding group of people that have knowledge and resources within themseves to help you. Good Luck Anita Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 18, 2001 Report Share Posted January 18, 2001 Carol Thankyou for reply, In answer to your question I like watching the tele and stuff but i am not into reading, I have my family given me lots of support but they cant start to understand how i am feeling, I have a lack off motivation at the moment. Please keep in touch, Thanks Again Tim Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 18, 2001 Report Share Posted January 18, 2001 Carol Thankyou for reply, In answer to your question I like watching the tele and stuff but i am not into reading, I have my family given me lots of support but they cant start to understand how i am feeling, I have a lack off motivation at the moment. Please keep in touch, Thanks Again Tim Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 18, 2001 Report Share Posted January 18, 2001 Hi I am sorry to hear about your daughter, I hope she will be O.K Thanks for you reply Tim Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 18, 2001 Report Share Posted January 18, 2001 Hi I am sorry to hear about your daughter, I hope she will be O.K Thanks for you reply Tim Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 18, 2001 Report Share Posted January 18, 2001 Carol, how beautiful was your response to Tim. It is frightening no matter how you slice it or how big a serving of NF2 you have. the best to you, Vicki Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 18, 2001 Report Share Posted January 18, 2001 Carol, how beautiful was your response to Tim. It is frightening no matter how you slice it or how big a serving of NF2 you have. the best to you, Vicki Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 18, 2001 Report Share Posted January 18, 2001 Hi Tim....Coping.......I think each one of us deal with it in a different way. For me, I try to use my mindset as the main one. Not denying that I have it. I do meditation which helps to a point, then I take my motrin too. I keep busy when I can, BUT rest when I have to. I do not push myself anymore and I have learned to say no to others. Do you have quiet intersts, like reading or a craft that you can do when you are being "quiet"? A relaxing interest? I pray a lot.....and I pray for others. I cry...I cry for others. I am two hours away from my doctor, though yesterday an accident caused us to take 3.5 hours!!! I get frustrated, but then talk to myself and relax and know I will be there soon or see them in awhile. The main thing is education...ask questions, ask questions!!! The more you know and understand, the better it is. The unknown is scary. Get a notebook and write down what you learn here and it makes it easier. When you are feeling down...come here! No question, no feeling is stupid. There is the chat room, and I am sure someone would meet you there if you need to talk directly..... Do you have family and friends around? My prayers are with you... and Hugs galore!!! ((((((())))))) Carol Tim West wrote: Hi, My name Tim and i am 21 years old, I have recently been diagnosed as having NF2, and have two AN's above the ears as well as another four tumours. I would like hear from people similar to my age, how they are coping with life, their location etc Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 18, 2001 Report Share Posted January 18, 2001 How are you feeling Tim? Feel free to e-mail me personally if you like.... Carol horizons@... totalwest@... wrote: > Carol > > Thankyou for reply, > > In answer to your question I like watching the tele and stuff but i am not > into reading, I have my family given me lots of support but they cant start > to understand how i am feeling, I have a lack off motivation at the moment. > > Please keep in touch, > > Thanks Again > > Tim Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 18, 2001 Report Share Posted January 18, 2001 How are you feeling Tim? Feel free to e-mail me personally if you like.... Carol horizons@... totalwest@... wrote: > Carol > > Thankyou for reply, > > In answer to your question I like watching the tele and stuff but i am not > into reading, I have my family given me lots of support but they cant start > to understand how i am feeling, I have a lack off motivation at the moment. > > Please keep in touch, > > Thanks Again > > Tim Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 18, 2001 Report Share Posted January 18, 2001 How are you feeling Tim? Feel free to e-mail me personally if you like.... Carol horizons@... totalwest@... wrote: > Carol > > Thankyou for reply, > > In answer to your question I like watching the tele and stuff but i am not > into reading, I have my family given me lots of support but they cant start > to understand how i am feeling, I have a lack off motivation at the moment. > > Please keep in touch, > > Thanks Again > > Tim Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 19, 2001 Report Share Posted January 19, 2001 In a message dated 1/18/01 11:32:59 AM Pacific Standard Time, totalwest@... writes: << My name Tim and i am 21 years old, >> Hi Tim! I am Lori Jo and I live in MI. I am 36 and married and have 3 kids. Welcome to the crew Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 19, 2001 Report Share Posted January 19, 2001 In a message dated 1/18/01 11:32:59 AM Pacific Standard Time, totalwest@... writes: << My name Tim and i am 21 years old, >> Hi Tim! I am Lori Jo and I live in MI. I am 36 and married and have 3 kids. Welcome to the crew Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 19, 2001 Report Share Posted January 19, 2001 To All Thanks everybody who replied to me, You have all been very kind. I will take a few days to contemplate my next course of action, I do not feel any better regarding NF2 however receiving all your kind emails have cheered me up alot. Please keep in touch Please send any messages to TOTALWEST@... - the reason i used TOTAL is because nothing else would work and i got stressed ot so i used the first thing that came in to my head and i happened to be wearing a Total Oil T Shirt at the time. Thanks Tim Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 19, 2001 Report Share Posted January 19, 2001 HI TIM,MY NAME IS PAM,AND MY SON JAMES WAS DIAGONSED AT THE AGE OF 12.HE'S NOW 21 AND HAS HAD 3 LEFT ACOUSTIC NEUROMAS REMOVED .PLUS MANY OTHER TUMORS.AT 1ST HE WAS VERY ANGRY THAT THIS WAS HAPPENING TO HIM.NOW HE HAS DECIDED TO NOT LET IT GET TO HIM.HE'S LOST A FEW JOBS BEACUSE OF HEARING LOSSS AND BALANCE,BUT IT DOESN'T STOP HIM.HE JUST THINKS SOME PEOPLE ARE NARROW MINDED.HE JUST KEEPS TRUCKING ON.THE ONLY THING HE WORRY'S ABOUT IS PASSING IT ON TO HIS KIDS.HE'S CONSIDERING A VASECTOMY.LAST FEB THEY FOUND 3 TUMORS ON THE BRAIN STEM,9TH 10TH AND 11TH NERVES.HE HAS HIS WEAK MOMENTS,BUT HE WONT LET THIS BEAT HIM.I WONT EITHER. WE WISH YOU ALL THE LUCK IN THE WORLD TIM. PAM AND JAMES LAKEMAN Help > Hi, > > My name Tim and i am 21 years old, I have recently been diagnosed as > having NF2, and have two AN's above the ears as well as another four > tumours. I would like hear from people similar to my age, how they > are coping with life, their location etc > > Briefly - I work for a forklift truck manufacturer and am currently > going through possible redundancy, my interests include Football and > a wide range of Motor Sports. > > I am finding it fairly hard to deal with at the moment and would like > some ideas about living with NF2, and coping generally, it is all > very new to me and my family and I guess it will get easier. > How did you find it? > > Thanks > > Bye Bye > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 19, 2001 Report Share Posted January 19, 2001 HI TIM,MY NAME IS PAM,AND MY SON JAMES WAS DIAGONSED AT THE AGE OF 12.HE'S NOW 21 AND HAS HAD 3 LEFT ACOUSTIC NEUROMAS REMOVED .PLUS MANY OTHER TUMORS.AT 1ST HE WAS VERY ANGRY THAT THIS WAS HAPPENING TO HIM.NOW HE HAS DECIDED TO NOT LET IT GET TO HIM.HE'S LOST A FEW JOBS BEACUSE OF HEARING LOSSS AND BALANCE,BUT IT DOESN'T STOP HIM.HE JUST THINKS SOME PEOPLE ARE NARROW MINDED.HE JUST KEEPS TRUCKING ON.THE ONLY THING HE WORRY'S ABOUT IS PASSING IT ON TO HIS KIDS.HE'S CONSIDERING A VASECTOMY.LAST FEB THEY FOUND 3 TUMORS ON THE BRAIN STEM,9TH 10TH AND 11TH NERVES.HE HAS HIS WEAK MOMENTS,BUT HE WONT LET THIS BEAT HIM.I WONT EITHER. WE WISH YOU ALL THE LUCK IN THE WORLD TIM. PAM AND JAMES LAKEMAN Help > Hi, > > My name Tim and i am 21 years old, I have recently been diagnosed as > having NF2, and have two AN's above the ears as well as another four > tumours. I would like hear from people similar to my age, how they > are coping with life, their location etc > > Briefly - I work for a forklift truck manufacturer and am currently > going through possible redundancy, my interests include Football and > a wide range of Motor Sports. > > I am finding it fairly hard to deal with at the moment and would like > some ideas about living with NF2, and coping generally, it is all > very new to me and my family and I guess it will get easier. > How did you find it? > > Thanks > > Bye Bye > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 19, 2001 Report Share Posted January 19, 2001 HI TIM,MY NAME IS PAM,AND MY SON JAMES WAS DIAGONSED AT THE AGE OF 12.HE'S NOW 21 AND HAS HAD 3 LEFT ACOUSTIC NEUROMAS REMOVED .PLUS MANY OTHER TUMORS.AT 1ST HE WAS VERY ANGRY THAT THIS WAS HAPPENING TO HIM.NOW HE HAS DECIDED TO NOT LET IT GET TO HIM.HE'S LOST A FEW JOBS BEACUSE OF HEARING LOSSS AND BALANCE,BUT IT DOESN'T STOP HIM.HE JUST THINKS SOME PEOPLE ARE NARROW MINDED.HE JUST KEEPS TRUCKING ON.THE ONLY THING HE WORRY'S ABOUT IS PASSING IT ON TO HIS KIDS.HE'S CONSIDERING A VASECTOMY.LAST FEB THEY FOUND 3 TUMORS ON THE BRAIN STEM,9TH 10TH AND 11TH NERVES.HE HAS HIS WEAK MOMENTS,BUT HE WONT LET THIS BEAT HIM.I WONT EITHER. WE WISH YOU ALL THE LUCK IN THE WORLD TIM. PAM AND JAMES LAKEMAN Help > Hi, > > My name Tim and i am 21 years old, I have recently been diagnosed as > having NF2, and have two AN's above the ears as well as another four > tumours. I would like hear from people similar to my age, how they > are coping with life, their location etc > > Briefly - I work for a forklift truck manufacturer and am currently > going through possible redundancy, my interests include Football and > a wide range of Motor Sports. > > I am finding it fairly hard to deal with at the moment and would like > some ideas about living with NF2, and coping generally, it is all > very new to me and my family and I guess it will get easier. > How did you find it? > > Thanks > > Bye Bye > > > > > Quote Link to comment Share on other sites More sharing options...
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