Ogliodendroglioma Ii

hello. I'm just looking for some info on alternative therapies. My husband(37years old) has a golf ball sized oglio removed from his front left. huge scar and just started radiation therapy. I'm not understanding if this is necessary as radiation tends to be a poison not a good thing. Maybe I am wrong and need more infor. can anyone helP/

Tumors are graded on a scale of 1-4, with one ane two being considered 'benign' and three and four being considered 'malignant'. What type of radiation therapy is your husband undergoing? Is it external beam therapy or gamma knofe? Why did your doctors opt for radiation therapy? Was your husband's tumor completely resected? Typically, radiation is held until you have a malignant tumor. Glioma type brain tumors recur almost 100% of the time, and usually progress to a more malignant grade each time. By using radiation on a slower-growing grade two tumor you are using one of the best treatments when it will do the least amount of good. You can only have external beam radiation to the brain once, and then the brain has received its lifetime maximum dose. Strongly recommend you get a second (and even third) opinion on both the pathology and treatment options from a major brain tumor center such as UCSF, MD Anderson or Duke. Good luck!

thank you for your information. How do you know so much? Have you had a tumor also? Where is this center located? California? I just really don't know where to start and if we have time to get a second opinion. I will be meeting with the doctor tomorrow and I will be asking alot of question. Please help

My wife is the tumor patient. She has a GBM, a Grade IV tumor. She passed her one-year prognosis one month ago and is currently tumor-free. MD Anderson is in Houston, Duke is in Durham, NC, and UCSF is in San Francisco. They each have extensive websites where you can find their contact information. They will also review MRI's and pathology slides that you have sent to them. Where are you located? Brain tumor treatment is very highly specialized and I strongly recommend you get a second (and even a third) opinion on both the pathology and treatment options from a major brain tumor center before making any irreversible decisions (like starting radiation). Did you husband's pathologist perform a genetic analysis looking for the 1P 19Q deletion? That would tend to suggest your husband's tumor would be more responsive to chemotherapy. It is a common test when diagnosed with an Oligo and you should ask for the results or insist that testing be performed if it hasn't been already. Good luck

Thank you so much for answering my questions. Where is your wife being treated? We live in Oregon and the closest place for us to go is in San Francisco. I will try to contact someone there. In the meantime we have discontinued radiation as it did not make since to me either that my research was not good on radiation for this type of tumor.
I was amazed to hear your wife is tumor free especially because she had a glioblastoma. That is what they first thought my husband had in the emergency room after just the ct scan. Then after a MRI the neurologist said no he didnt think that is what it was and after surgery the pathologist said it was an Oglio II.
What kind and how long of treatment did your wife have? What is 1p19Q deletion? We are seeing the surgeon tomorrow for the first time since the surgery. I will ask for a referal for a second opinion. Thank for caring enough to help. Michelle

Hi-

I can really relate to your situation since my husband too has an ogliodendroglioma.  He is 39 years old and this March will mark 7 years since he was diagnosed with a brain tumor.  It wasn't until last December that he started to go downhill. 

Jason had surgery at UCLA on 7/6/06 and will be starting Temodar this Monday, 12/18.  The surgeon could only remove 50% of the tumor due to the nasty little "threads" that run through the brain making it more complicated to dissect.  The resection confirmed the type of tumor as a Grade II Ogliodendroglioma. He was originally diagnosed with an anaplastic astrocytoma and was under observation for the past 6 years. Three surgeons turned him down due to the risk of the surgery. Go figure. It wasn't until he was placed in hospice at the VA here in Arizona in February that we were able to meet Dr. Liau at UCLA.  She said, "That's all we do here...inoperable tumors."  This was our last and only hope.

 I don't really have any new information on brain tumors, but I thought I'd reply to your message for support. How old is your husband?  Do you have children?  My heart goes out to you. It's definitely an experience that no one can understand unless they've been where we are now.

God bless and please let me know where your husband is at now in his treatment.  It's been awhile since your last thread.  Hopefully you are still out there checking out this site.  I think it's great to find support.

Thank you and take care of you too.

Jenny

 

On 6/19/2006 Mfstamb wrote:

hello. I'm just looking for some info on alternative therapies. My husband(37years old) has a golf ball sized oglio removed from his front left. huge scar and just started radiation therapy. I'm not understanding if this is necessary as radiation tends to be a poison not a good thing. Maybe I am wrong and need more infor. can anyone helP/

Hello there.. I was wondering if your husband found some alternatives.. my husband is 55 and was diagnosed with Ogliodendroglioma ii 2 years ago.. since has had 3 tumor removals and Gamma knife surgery.. this last time we almost lost him..and he had to go through months of rehab to walk again..this time we are following a diet by a clinic called Hallelujah Acres.. they are tied in with the Tijauna Clinic that a lot of persons have been completely healed of all kinds of cancer.. so far on his last 3 MRI's no more growth and looks like shrinking... he is eating Latrile.. (that is the medical term) that was banned in The US by the AMA 30 year ago.. Latrile is also known as Nitrolisis or Vitamin B-17.. found in apricot kernals.. we purchase ours out of Californa by an organic grower..it has been studied out in different parts of the word where it is a part of daily diet.. such as the Huns Indians who live late into their 100's.. they grow and manufacture them and eat the whole fruit including the pits.. they have no histories of anyone having or getting cancer.. anyway if you would like to know more we can only testify it is working thus far for Mark.. we of course are following strict diets.. also.. sincerly Lizzie Theis 

Wow Elizabeth, you sound like you have been thru a lot and sending you lots of warm health giving sunshine. My brother-in-law (who has a 1 yr old daughter with my husbands sister) has a Ogliodendroglioma and Astrocytoma combined tumor. I am the 'alternative/complimentary' voice of the rather conventional family so I push for al complimentary medicine or lifestyle choices. Just hoping you could give me some direction as my in-laws are going to the States in Sept. maybe they could buy some of the Apricot Kernels for Mark? 50 - 75% of the tumor was removed and he had impaired speech and has rehabilitated his walking somewhat. Still can't use his right hand properly. Wishing you all the best and I'll get on and find out more about the info in your last post. Solarjuice x