Pontine Glioma Vs. Avm

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Pontine Glioma Vs. Avm

by Nomster on Fri Jun 03, 2005 12:00 AM

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My son was diagnosed with a possible pontine glioma vs. a vascular abnormality a year ago at the age of 2 1/2. The abnormality was originally measured at 1.5 cm x 1.1 cm x 1.1 cm. We were told that if it is a tumor it is one of the slowest growing, yet when I researched it does not appear that gliomas grow slowly. I have researched the gamma knife and have asked the oncologist if it would be a viable option if the tumor should grow. My son just had his third MRI and the physician has told us that that the tumor has now grown 1 mm. I am trying not to get upset about it and wait out until the physician tells us if it now can be treated. We were told that until the abnormality became unstable we could not treat it. I am wondering if I should seek another opinion to find out if more aggressive treatment should be pursued or if we should just continue playing this waiting game. If anyone has any information, please let me know. Unfortunately this will be a long weekend until I can call the children's hospital and talk to my son's physician. Thank you to anyone that answers this email.

Pontine Glioma

by Carsusie on Wed Jun 08, 2005 12:00 AM

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I am so sorry to hear about your son's diagnosis. I don't know anything about this particular type of tumor, but would definitely recommend a second opinion (or two.)as others encouraged me to do so My husband has a GBM; he had surgery and opinion from Moffitt, Tampa, which has a very good Brain Tumor center; also Duke University seems to be the most "popular" choice for cutting edge treatments; on web sites have also heard of MD Anderson in Texas being recommended. It seems that all of these places will review information and give a consulation--generally without you're having to go there. I'm sure there are others, but it seems to be the consensus to consult with major brain tumor centers. Good luck.

Pontine Glioma

by Thenley on Thu Jun 30, 2005 12:00 AM

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Hello, I have a nephew with pontine glioma and he underwent radiation and chemo at Ste Jude. We have reaally researched the options and found a very interesting treatment that not even the oncolgists discourage. This was studied at MD Anderson and Dr Prasanta Banerji is the spearhead on this. You can find study results in the international Journal of Oncology. The treatment consists of Ruta 6c in conjunction with calcera (Calcium Phosfate) My nephew is doing great. This is the only treatment I've found that has cured Pontine Glioma. I'll be happy to fax anyone the information I have. I actually called the research Dr's at MD Anderson and they gave me the number to Dr. Banerji who filled us in on how much and often. The facinating thing is that its a natural suppliment and has no side effects. The MD anderson study was funded by the National Institutes of Health and found that Ruta has an effect of strengthening the telemeres on our DNA Ladder I can only guess but I think that this makes the good cells recognize the bad and detroy them. After much prayer and research we finally found something that works. Pontine Glioma has no survivors that I can find except through this. I believe our little fella will grow up happy healthy and someday I'll be a great Aunt and all because we found out about Ruta and Brain Tumors. The sad thing is that because it's a natural suppliment it can't be called a cancer treatment drug so you don't see much about it. I hope that this helps you... T

Pontine Glioma Vs. Avm

by Nomster on Sat Jul 23, 2005 12:00 AM

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We were told that the pontine glioma would effectively be treated with chemotherapy due to the slow growth pattern of the cancer type. I am starting to wonder if we don't need to get a second opinion. Right now he is discussed in a group of oncologists at the Milwaukee Children's Hospital. We were not sure if this was sufficient as secondary opinion. He has yet to have any more symptoms. The symptoms they told us to watch for are common to a 3-year-old child such as mood swings etc. How do you determine what is normal child growth and what is disease progression? Thank you for everyone that has given feedback. Naomi

Ruta and Calc

by Angelonearth on Mon Jul 25, 2005 12:00 AM

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Hi, you posted in June about your nephew being on Ruta and Calcarea. My 5 year old is on that and has been for about 1 month. How is your nephew doing? Does he have a website? Also, can you please share the number to MD Anderson and Dr. Banerji? I want to know as much as I can about this treatment. Thanks bunches.

Ruta and Calcarea

by Angelonearth on Mon Jul 25, 2005 12:00 AM

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Hi, I need to know more about the Ruta 6C and Calcarea. My 5 year old is on it. How is your nephew doing? Please let me know. Thanks.

Info on Ruta-6 and Calcera

by Saddad01 on Tue Aug 09, 2005 12:00 AM

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Hi, Thank you for your information. At last some positive information! My daughter was just diagnosed and we are franticly looking for additional opinions. I would like more info on this treatment(i.e. where to get it and how much does it cost(not that it would matter if it would save my little girl)). I have heard about it thru someone else, but they said we could not get it in the US? Please help!

Pontine Glioma and Ruta 6

by Christinems on Thu Aug 11, 2005 12:00 AM

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My daughter is almost 7 years old. We just found out last week that she has been diagnosed with pontine glioma. Every doctor I have spoken to only gives her a 12 to 18 month survival rate. I am looking and hoping for a miracle. I have researched Ruta 6. But I was hoping I could get some information from a parent or family member of someone who already tried it. I would like to know if there were any side effect? If it was taken at the same time as chemo and radiation? And most important how long did it keep the cancer away? If you have any information that can help us please respond. Thank you! ChristineMS

Taking Ruta 6

by Christinems on Fri Aug 12, 2005 12:00 AM

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My daughter is almost 7 years old and has been diagnosed with pontine glioma. I was wondering if you had any info. on Ruta 6. I am most interested in how children who have already taken it are doing. Please respond we are desperate. Thank you, ChristineMS

Glioblastoma

by Kimberly47 on Sat Aug 13, 2005 12:00 AM

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I would like to contact M.D. Anderson to discuss this treatment, could you e-mail the telephone number of MD Anderson and Dr. Banerjiand and any additional information. this is my e-mail: LourdesMadrid@hotmail.com
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