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nursnis (@nursnis)

Glioblastoma Multiforme and Cognitive Loss

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

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@johns66

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

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Replies to "Scott, this is Linda. My husband was fiagnised with gbm in April 2018. The tumor was..."

Hi @johns66 Sorry for the delayed response. Spent the day on airplanes, none of which were of a mind to arrive/depart on time!

It is nice to e-meet you here you here, Linda. I am so sorry to learn of your husband's diagnosis. However, I was cheered to read you are somewhere listening to the bugle of the elk! What a thrill! I live summers in northern Minnesota and wish we had elk up here! Love the summer sounds here — especially the loons in the mornings and evenings! I am glad you are able to do what you are doing!

My wife was initially given 7 years post-op and she doubled that! When she was given the prescription for home hospice she was given 'six months, but probably weeks', and she fought on for just over 14 months. I guess that part of medicine falls under the art of medicine, rather than the science of medicine. Somethings are simply unknown in our lives. As one of my wife's neuro docs said to me: "Scott, there is so much about the brain that is still unknown and when it's broken there is even more we don't understand."

I applaud your husband's decision to enter a clinical trial! That is so great for him and possibly untold thousands in the future! Please tell him some dude he doesn't know is a fan and pulling for him big time!

I'm happy to provide whatever information I can. I'm not any kind of medical professional, so I can only speak from the personal experiences of my wife and me, as a well-seasoned caregiver.

Advice is hard to give since I'm a firm believer in the fact each patient is unique as is their cancer and their journey. For instance, my wife was lefthanded, so the location of her tumor caused her issues that a righty would not have had. That said, I am more than willing to share all I know! Over time I learned a lot of pretty simple tips and tricks to help us manage.

Cheers to you and may the elk be noisy and plentiful!

Strength, courage, and peace!

Please ask any questions you might have!