Rare form of brain cancer - Malignant mixed Glioneuronal Neoplasm

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Rare form of brain cancer - Malignant mixed Glioneuronal Neoplasm

by rudeestar on Fri Aug 13, 2010 03:43 AM

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Any one else been diagnosed with a rare form of brain cancer? My husband has been diagnosed with stage 3 malignant mixed glioneuronal neoplasm. It's so rare that there isn't much info. about it in books or on the internet. My husband suffered a stroke back in January 2010 which was caused by the tumor growing in the cerebellum portion of his brain. He underwent two resections, 6 weeks of radiation and chemo (Temodar). The left side of his body has been affected, he can't walk without assistance, he studders sometimes and his short term memory comes and goes. I have never been given a prognosis nor do I want it. I believe my husband will live and will live an abundant life. He just needs some time to get through all of these hurdles. Is there anyone out there going through this type of cancer or even stage 3 cancer? Any input about your progress will be beneficial.

RE: Rare form of brain cancer - Malignant mixed Glioneuronal Neoplasm

by hopen on Fri Aug 13, 2010 04:48 AM

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You probably want to post this on the brain cancer page....Sorry to hear about your husband.  My prayers are with your family.

RE: Rare form of brain cancer - Malignant mixed Glioneuronal Neoplasm

by Mallory on Thu Aug 26, 2010 07:43 PM

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Hi I actually was recently diagnosed with the same type of tumor. I had the tumor removed and im awaitng treatment. I was wondering if the treatment caused the memory loss and how his body was effected? or was it the stroke? Also is he still reciving chemo?

RE: Rare form of brain cancer - Malignant mixed Glioneuronal Neoplasm

by Mallory on Thu Aug 26, 2010 07:44 PM

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Hi I actually was recently diagnosed with the same type of tumor. I had the tumor removed and im awaitng treatment. I was wondering if the treatment caused the memory loss and how his body was effected? or was it the stroke? Also is he still reciving chemo?

RE: Rare form of brain cancer - Malignant mixed Glioneuronal Neoplasm

by stacie7 on Sat Sep 11, 2010 05:53 AM

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my 11 year old son was diagnosed at age 7 with a malignant glioneuronal. he also had surgery that has left him with weekness in his left leg, 6 weeks of radiation and chemo (temodar). we have mri's every 3 months. In jan of 2010 they found a 2nd tumor, this one we did not have surgery, only radiation. the mri's we have had since jan have all come back clear of tumors. we also have never been given a prognosis nor been able to find much information on his type of cancer. our son does an amazing job in school and does not show any learning problems. although his short term memory does come and go.

RE: Rare form of brain cancer - Malignant mixed Glioneuronal Neoplasm

by rudeestar on Sun Sep 12, 2010 03:04 AM

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Thanks. I just did. I thought I did post on the brain cancer page...Oops!

 

Thanks for your prayers. I really appreciate them.

RE: Rare form of brain cancer - Malignant mixed Glioneuronal Neoplasm

by rudeestar on Sun Sep 12, 2010 03:13 AM

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OMG! I can't believe there is someone else out there with the same diagnosis as my husband. The stroke caused the memory and left side weakness but the stroke was caused by the tumor. My husband is 34 years old and only complained about head aches and dizziness.

He has completed 6 weeks of radiation and is on Temodar pills for 5 days on and 3 weeks off every month for a year. He was diagnosed in Jan. 2010. He is home now but is undergoing physical, occupational and speech therapy. He has many deficits due to the stroke but he is young, strong and determined. What stage have they diagnosed you with? How are you feeling? What is your treatment plan? I would really like to keep in touch. I will keep you in my prayers as well.

RE: Rare form of brain cancer - Malignant mixed Glioneuronal Neoplasm

by rudeestar on Sun Sep 12, 2010 03:24 AM

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On Sep 11, 2010 5:53 AM stacie7 wrote:

my 11 year old son was diagnosed at age 7 with a malignant glioneuronal. he also had surgery that has left him with weekness in his left leg, 6 weeks of radiation and chemo (temodar). we have mri's every 3 months. In jan of 2010 they found a 2nd tumor, this one we did not have surgery, only radiation. the mri's we have had since jan have all come back clear of tumors. we also have never been given a prognosis nor been able to find much information on his type of cancer. our son does an amazing job in school and does not show any learning problems. although his short term memory does come and go.

I am so glad to read that your son is responsing well to treatment. It gives me hope for my husband. We are both caregivers and I would really like to keep in touch with you. I am so new at this and sometimes I feel so overwhelmed with grief and sadness. It hurts so bad to see him go through this battle and in addition he is recovering from a stroke.

Doctors will like to try Avastin if the Temodar doesn't work and in addition insert a permanent port in his chest to administer drugs and take blood. Did your little boy have this procedure done? I really appreciate your input.

RE: Rare form of brain cancer - Malignant mixed Glioneuronal Neoplasm

by Mallory on Mon Sep 13, 2010 01:21 AM

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Ha, ye it is hard to find a lot about this tumor. Is he doing better now that he is home? I haven't started treatmnet; I've been having trouble with the insurance company and my primay care provider becaseu I want to see a specialist for trreatment. But they tell me I will have the same type of treatment. For me its a mixture of anaplastic astrocytoma. I dont know is it the same for your husband?

RE: Rare form of brain cancer - Malignant mixed Glioneuronal Neoplasm

by kturbeville on Fri Nov 18, 2011 05:45 PM

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On Sep 11, 2010 5:53 AM stacie7 wrote:

my 11 year old son was diagnosed at age 7 with a malignant glioneuronal. he also had surgery that has left him with weekness in his left leg, 6 weeks of radiation and chemo (temodar). we have mri's every 3 months. In jan of 2010 they found a 2nd tumor, this one we did not have surgery, only radiation. the mri's we have had since jan have all come back clear of tumors. we also have never been given a prognosis nor been able to find much information on his type of cancer. our son does an amazing job in school and does not show any learning problems. although his short term memory does come and go.

How is your son? I hope well.  My daughter age 15 was just diagnosed with this. It is her brain and spot on spine.  They say she will start radiation and chemo.  Where was your some treated?

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