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nursnis (@nursnis)

Glioblastoma Multiforme and Cognitive Loss

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

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@IndianaScott

Hi @johns66 I'm sorry my posts have been confusing.

My wife, at age 49, was diagnosed with her tumor. She had a resection then, which also incurred a significant brain bleed. At that time the doctors gave her a prognosis of 7 years to live. She lived for over 14 years total. In the 12th year of her journey her neuro-oncologist prescribed hospice care for her. At that time he said she may live for six months, but to expect it to be only a matter of weeks. She chose home hospice care over a hospice care facility. We were able to do that, but I also know this is not possible for everyone. She lived in home hospice care for just over 14 months before she finally lost her war.

I hope this is clearer. We always looked at her war in two pieces. The first years and then the hospice months.

Her doctors suggested to us the location of her tumor would have been less compromising to her had she been right handed. Our first indication of the tumor's presence was when she began having olfactory and visual hallucinations. The tumor damaged her physical condition at first with complete left side paralysis and a loss of abilities such as walking, talking, swallowing, eating, etc. These came back after about a year and half of OT and PT. She also had significant cognitive losses such as losing her ability to speak, read, write, do math, control her emotions, control her impulses, and lost all ability to focus for longer than a few seconds at a time. She was able to relearn to speak, read, and write, but never to do math. She also never recovered her abilities to control her impulses and ability to focus.

Her changes/declines during hospice is a different topic.

Strength, courage, and peace!

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Replies to "Hi @johns66 I'm sorry my posts have been confusing. My wife, at age 49, was diagnosed..."

Ok thank you that is much clearer. Hers must not have been a gbm. Is that correct? Johns is a gbm and has been given 6 mos to 1.5 yrs. I’m not sure if I mentioned that he is also wearing the Optune device. Thank you so much.