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nursnis (@nursnis)

Glioblastoma Multiforme and Cognitive Loss

Brain Tumor | Last Active: Mar 10, 2020 | Replies (37)

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Hello @nursnis I am Scott while I do not have this diagnosis, my wife did have this. She survived for 14+ years after her surgery. I'd be willing to discuss how she was effected both in the areas of cognition and physically. They were very different from each other and were not always consistent over time.

That said, I do realize that each individual's journey in thier diagnosis and prognosis is unique, but I am always willing to share what I observed and learned along my wife's journey.

Strength, courage, and peace!

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Replies to "Hello @nursnis I am Scott while I do not have this diagnosis, my wife did have..."

wow – 14 yrs is a long time for that diagnosis. My sis in law had her tumor removed this past July and woke up with lost of cognitive ability. Hers was R temporal lobe and frankly we didn't expect that to happen. The Dr. said to take her home and live before surgery. The family has chosen no treatment since she isn't able to take care of herself. She moves OK – eats well – is told what to do and does it, but doesn't shower etc on her own. She talks to us all, but it is gibberish. Sometimes comes up with a reaonable statement, but nothing that continues along a reasonable conversation. She wears diapers, but hasn't had to so far. It's just cautionary for hubby now – he cares for her with the help of daytime sitters. She is not alone for fear of falling. We are wondering – how much does she understand if at all? Does she know how sick she is? 3 Drs. agreed with us – no treatment due to her needing care and not being her brilliant self. She doesn't seem to have quality of life. Is this understandable?

Scott, this is Linda. My husband was fiagnised with gbm in April 2018. The tumor was removed on May 9. We are on vacation currently because when John was diagnosed and they gave him 6 mos – 18 mos he wanted to hear the elk bugle in CO. We will be going home on Saturdsy. I too am very surprised with your wife’s outcome of 14 + Years. I would like to learn and talk more. My husband is 66 and we have done rad and chemo and are doing a clinical trial and more chemo once a month currently. Any advice or info you’d like to provide would be greatly appreciated. TY