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Adult Medulloblastoma

fighter34
Posts: 2
Joined: Jan 2011

My husband was diagnosed in December of 2010 with a brain tumor. He had had symptoms of hand shaking, balance off, dizziness, nausea, and slurred speech. We then went down to Indianapolis, IN and had the tumor removed. It was located on his cerebellum and was the size of a ping pong ball. They said that there was a complete resection, but we were waiting for the pathology reports. About 3 days later it came back that it was cancerous. So he was sent to have a MRI of his entire spine, that came back that he did have the cancer all up and down his spine. He is currently doing radiation to the entire brain and spine. He has to have a total of 32 treatments and has 14 more to go. Then he will have a month off and start 4 to 6 months of chemo.
I am just looking for anymore information or stories that anyone can share. This cancer is so rare in adults that it is hard to find much.
Thank you

MaryCD
Posts: 2
Joined: Sep 2016

My husband was diagnosed in June 2014 with medulloblastoma (he was 36), and had a partial resection of tumor.  He had numerous tumors in his spine (also medulloblastoma)  He had 30 sessions of radiation as well as 6 rounds of chemo (cisplatin and etoposide).  We are 2 years out and the scans are coming back stable (and the tumors in spine have disappeared).

Despite the good tumor news, his quality of life is almost nil.  It could be because the doctors left him on dexamethasone for 2 years (we believe it was accidently, they just neglected to ever tell him to stop taking it). He now is trying to taper, but it's been proving very difficult to go below 1.25mg per day. Everytime he tries his fatigue is so bad he can hardly stand.  It's pretty awful.  If anyone has experience with severe fatigue this far out please get in touch.  

Thanks!

Mary (Washington DC)

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