Guest guest Posted April 16, 2002 Report Share Posted April 16, 2002 Can anyone suggest ways I can help treat some benign tumors (neurofibromas) that my five year old son. His seems to be responding to the alternate treatment I give him for his optic hypothalamic glioma, but the other ones have not changed. I would be grateful for any info. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 19, 2002 Report Share Posted April 19, 2002 Dear Member, Could you tell us more about your son's condition. The glioma and what alternate treatment you are using for example and then about the neurofibromas. Some history too. I don't know if any on this list can recommend anything but if we know more we might be able to help more. Thanks, Gettingwell, " kelly713713 " <alcornsuejim@b...> wrote: > Can anyone suggest ways I can help treat some benign tumors > (neurofibromas) that my five year old son. His seems to be responding > to the alternate treatment I give him for his optic hypothalamic > glioma, but the other ones have not changed. I would be grateful for > any info. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 22, 2002 Report Share Posted April 22, 2002 I am on a FlaxOil list for tumors and cancer. Flaxoil and cottage cheese reduces my breast tumors. I don't know if it would help you, but you might want to learn about it. BonnieB In a message dated 4/21/2002 10:51:57 PM Eastern Daylight Time, alcornsuejim writes: << More info on my son. He is 4 years old and has a condition called neurofibromatosis type 1. He is covered in cafe au lait marks (coffee stained marks) all over his body, as well as the optic hypothalamic low grade malignant glioma. If this continues to grow it will affect his eye sight as well as major centres of the brain. We have been treating him alternately for this glioma and have had regression on the last two MRIs. However, we have just found out that he has another growth in his cervical spine on last MRI. I believe that this growth is not malignant as it would also respond to the treatment I am giving him. (It is only a gut feeling, I could be wrong) He also has a lump on either side of his neck. It is possible that they are enlarged lymph glands, but more likely to be neurofibromas. With NF a tumor can grow any where on any nerve inside and outside the body. As he gets older (puberty) he will develop more neurofibromas on his skin. There are many symptoms people with NF can get, it varies from person to person. It is such an unpredictable condition - it can be anywhere from very mild to very servere and life threatening. The lumps in his neck have been there for quite a long time, they do not change in size so I can assume anything I have given him so far is not making a difference to them. Any suggestions? >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 22, 2002 Report Share Posted April 22, 2002 More info on my son. He is 4 years old and has a condition called neurofibromatosis type 1. He is covered in cafe au lait marks (coffee stained marks) all over his body, as well as the optic hypothalamic low grade malignant glioma. If this continues to grow it will affect his eye sight as well as major centres of the brain. We have been treating him alternately for this glioma and have had regression on the last two MRIs. However, we have just found out that he has another growth in his cervical spine on last MRI. I believe that this growth is not malignant as it would also respond to the treatment I am giving him. (It is only a gut feeling, I could be wrong) He also has a lump on either side of his neck. It is possible that they are enlarged lymph glands, but more likely to be neurofibromas. With NF a tumor can grow any where on any nerve inside and outside the body. As he gets older (puberty) he will develop more neurofibromas on his skin. There are many symptoms people with NF can get, it varies from person to person. It is such an unpredictable condition - it can be anywhere from very mild to very servere and life threatening. The lumps in his neck have been there for quite a long time, they do not change in size so I can assume anything I have given him so far is not making a difference to them. Any suggestions? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 22, 2002 Report Share Posted April 22, 2002 There is a good group run by Cliff Beckwith at: FlaxSeedOil2/ He was diagnosed 11 years ago with prostate cancerand firmly believes that the flax seed oiled saved him. Frank Gettingwell, BonnieBar@a... wrote: > I am on a FlaxOil list for tumors and cancer. Flaxoil and cottage cheese > reduces my breast tumors. I don't know if it would help you, but you might > want to learn about it. BonnieB > > In a message dated 4/21/2002 10:51:57 PM Eastern Daylight Time, > alcornsuejim@b... writes: > > << > More info on my son. He is 4 years old and has a condition called > neurofibromatosis type 1. He is covered in cafe au lait marks (coffee > stained marks) all over his body, as well as the optic hypothalamic > low grade malignant glioma. If this continues to grow it will affect > his eye sight as well as major centres of the brain. We have been > treating him alternately for this glioma and have had regression on > the last two MRIs. However, we have just found out that he has > another growth in his cervical spine on last MRI. I believe that this > growth is not malignant as it would also respond to the treatment I > am giving him. (It is only a gut feeling, I could be wrong) He also > has a lump on either side of his neck. It is possible that they are > enlarged lymph glands, but more likely to be neurofibromas. With NF a > tumor can grow any where on any nerve inside and outside the body. As > he gets older (puberty) he will develop more neurofibromas on his > skin. There are many symptoms people with NF can get, it varies from > person to person. It is such an unpredictable condition - it can be > anywhere from very mild to very servere and life threatening. The > lumps in his neck have been there for quite a long time, they do not > change in size so I can assume anything I have given him so far is > not making a difference to them. Any suggestions? > > >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 22, 2002 Report Share Posted April 22, 2002 Gettingwell, " kelly713713 " <alcornsuejim@b...> wrote: > More info on my son. He is 4 years old and has a condition called > neurofibromatosis type 1. He is covered in cafe au lait marks (coffee > stained marks) My most heart felt warmth to you and your son. Regarding the cafe au lait marks. Without seeing it that sounds like petachia. If you look that up it will say red spot. By no means are they usually red first but when they are they always turn to a coffee colored stain. That is to say they simply show up as a coffee colored stain from the start. Very common in liver disease if that is what they are. Three subjects you may want to look into Wobenzyme made by MUCOS, that have a good amount of research for the use of enzyme therapy on the MUCOS website. That is the most common used Brand of enzymes and most famous. I have seen some very good testimony on the net. Most recently a internet poster resolved a tumor on his shepards (dog) neck after I had suggested it. A good list to check out is the Paracleasus (sp?.. the healer) list. Many good alternative oriented Docs. show up from time to time on that list. PSP is widely used in Japan and China for tumors. The name is a bit elusive in some cases strickly referring to colorius versicolor in other cases a two or three mushroom combination with that as one of the ing. I had a fried resolve a liver tumor with that one. You can find several good websites with research articles from google.com by putting in PSP, and you may want to add tumor to the search line. And I will assume you familar with Burzinsky, and actinoplastin (sp?) therapy. If your not familar do a search on goggle.com (Burzinsky cancer) the first hit will take you to his website. If your not familar, I suggest checking this last link out. As an added side note actinoplastins (sp?) are derived from urine. I hope you get a chance to talk with him. I am not sure where his research is now but he should have concluded some trials and that infomation should be up on his website. Funded trials frequently are at no cost to a research subject. I don't know in this case. Please excuse spelling errors. I am very tired and a little ill and do not have spell check when I am posting through this list archives. Very best of luck to you and your son. all over his body, as well as the optic hypothalamic > low grade malignant glioma. If this continues to grow it will affect > his eye sight as well as major centres of the brain. We have been > treating him alternately for this glioma and have had regression on > the last two MRIs. However, we have just found out that he has > another growth in his cervical spine on last MRI. I believe that this > growth is not malignant as it would also respond to the treatment I > am giving him. (It is only a gut feeling, I could be wrong) He also > has a lump on either side of his neck. It is possible that they are > enlarged lymph glands, but more likely to be neurofibromas. With NF a > tumor can grow any where on any nerve inside and outside the body. As > he gets older (puberty) he will develop more neurofibromas on his > skin. There are many symptoms people with NF can get, it varies from > person to person. It is such an unpredictable condition - it can be > anywhere from very mild to very servere and life threatening. The > lumps in his neck have been there for quite a long time, they do not > change in size so I can assume anything I have given him so far is > not making a difference to them. Any suggestions? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 22, 2002 Report Share Posted April 22, 2002 > And I will assume you familar with Burzinsky, and actinoplastin (sp?) > therapy. Just to make it easier, the spelling is Burzynski. --- Outgoing mail is certified Virus Free. Checked by AVG anti-virus system (http://www.grisoft.com). Version: 6.0.350 / Virus Database: 196 - Release 4/18/02 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 23, 2002 Report Share Posted April 23, 2002 I also wated to mention it should not be to hard to reach Ralph Moss formerly of Sloan Kittering This site offers specific monographs on a variety of therapies called the Moss Reports. It also has an excellent link page to a variety of other cancer web sites, both conventional and complementary. Raph Moss, Ph. D. is the author of eleven books and three documentaries on cancer-related topics. He is or has been an advisor on alternative cancer treatments to the National Institutes of Health, the National Cancer Institute, the American Urological Association, Columbia University, the University of Texas, and the German Society of Oncology. http://www.cancerdecisions.com/ One other thing on the petechia. I talked with a pediatric nurse today and she did confirm to me that in children the spots will occur all over as opposed to in an adult usually local legs and arms. If there is any congestion around the liver, determined by palpatation, as swollen, or symtomatic complaint of pain in upper right quad or a complaint of right shoulder pain. I strongly suggest hot castor oil packs. There is info all over the web on this. I belong to various liver disease list and have gotten a few to use it and it most certainly does work. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 1, 2002 Report Share Posted May 1, 2002 ---Kelly, There is a supplement that has been known to shrink benign tumors over a period of time. It goes by the name IP-6. This substance also exists in Brown Rice. Cheers, JoAnn Guest joguest Friendsforhealthnaturally http://canceranswer.homestead.com/AIM.html In Gettingwell, " kelly713713 " <alcornsuejim@b...> wrote: > Can anyone suggest ways I can help treat some benign tumors > (neurofibromas) that my five year old son. His seems to be responding > to the alternate treatment I give him for his optic hypothalamic > glioma, but the other ones have not changed. I would be grateful for > any info. Quote Link to comment Share on other sites More sharing options...
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