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Brainstem Glioma

Posts: 1
Joined: Apr 2017

Are there any brainstem glioma survivors out there?  My son-in-law in 31, and was diagnosed in September.  He has done radiation, chemo, and natural supplements.  What else can we try?  We have been told this is a death sentence.  He and my daughter have a 1 1/2  year old and a 4 year old.

zyxa's picture
Posts: 1
Joined: Sep 2017

My husband was diagnosed with low grade glioma back in Feburary 2017. He is being treated at U of M. He did the rad therapy and chemo(temadar) and now at the end of September they are saying that it is more aggressive than what they first thought and is still growing. please if there is anyone out there that can give us other options that can help prolong his life it will be much appreciated for we are running out of time and insurance.. My husband is 48 years old and we need him so much!

Posts: 1
Joined: Sep 2017

My beloved wife was diagnosed with glioblastoma brain tumor in June doctors said she would be ok me and family really believe them.She had to  do chemotherapy and radiation she just kept getting worse finally the doctors put her back in hospital said it grown from 2 centimeters to 6 and said there was nothing they could do.they gave her 1 week to a month to live.they brought in hospice I brought her home and 2weeks later she died on August 11 . When she died I felt like I died all I wanted to do was die. But I have 19 year old autistic son that I got to take care of and he give me strength. She was only 53 all she wanted was to see him finish college andthat he ok my heart is rip into have no motivation at all but I know I have to keep going for him she was my world and heart and miss her so much

Posts: 1
Joined: Oct 2017

My boyfriend has been diagnosed with Gliosarcoma and we just started the chemo and radiation.  

I am so sorry that you went through this.  

Will keep you in my thoughts


Posts: 3
Joined: Oct 2017

Hi. My husband is 35 and is also battling a brainstem glioma. He had a biopsy when diagnosed and it came back with a H3K27M. We are currently staying in Michigan with his family as recovery from radiation has been challenging. How are is your son-in-law doing? My husband has also visited U of M.

Athena568's picture
Posts: 6
Joined: Dec 2017

Hi there, I was recently diagnosed with the sane tumor and mutation. I'm starting treatment at U of M next week, pease private message me if you would like to chat!

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