Glioblastoma Multiforme and Cognitive Loss

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!

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.

Hi @johns66 She was initially diagnosed with a grade III malignant glioma and it went to grade IV at some point. I recall they also called it diffusely infused.

Ok thank you and sorry for your loss.

Thanks @johns66 In this forum, the sorrow is understood. I, too, am sorry for the journey your husband is on and yours as a caregiver.

Thank you.

Bain Tumors What is the likely lifespan of someone with glioblastoma who does not take chemo and radiation after surgery?

Hi, @coachconnors - welcome to Mayo Clinic Connect. I've merged your post here so that you could meet others familiar with glioblastoma. I'm not able to provide any medical advice, not being a medical professional, but I'm thinking that other members in this discussion may have some thoughts about what you asked about the potential lifespan of someone with this disease who does not take chemo or radiation after surgery, as well as on experiencing glioblastoma in general.

@coachconnors, is this your personal diagnosis, or a loved one's? Have you or this loved one recently had surgery and are contemplating this decision?

In our case with our relative we were told about 6 months. It's been 3 months and so far so good altho we think we might be seeing a small bit of deterioration at this time.

Hello @coachconnors Nice to e-meet you here on Mayo Connect. I am Scott and my wife had surgery for her brain tumor and due to its location and the complications from surgery she made the decision not to have any chemo or radiation.

She fought her war for over 14 years, but I fully realize each patient and each tumor is very different.

Are you just asking out of general interest?

Strength, courage, and peace!