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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 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!

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Replies to "Hi @johns66 Sorry for the delayed response. Spent the day on airplanes, none of which were..."

Was our wife a survivor for months or years. I’m seeing both listed. Also, my husband is a lefty so if you have any advice on that it would be greatly appreciated.

Hi Scott, I just joined this group. It is interesting to read your posts especially about you lefty wife like me. I am on a similar journey. I had a glioblastoma (with a methylated marker) diagnosed and removed 9/25/2017. My original diagnosis was 12-15 months however once my methylated marker was discovered my longevity was extended to 23 – 25 months (8/2019-10/2019). Right around the corner! Ugh!

I did Radiation & Chemo following with a double blinded clinical trial (nivolumab) with an infusion every 28 days without an end for the infusions. I get very fatigued after the infusion and typically sleep for 10 – 20 hours after. Once I am rested I begin my "new normal" days which includes Bridge with girlfriends, gardening (can't do more than 2-3 hours without becoming over fatigued. When I start experiencing loss of language and my movements become sluggish I realize I've done too much. I was 60 when diagnosed and worked full time. Not feeling like I can contribute and communicate effectively is the hardest for me.

I am thankful to be healthy, at least what we call my "new healthy". I am happy and fortunate to still be here. My husband and I travel alot and do the things we failed to do in the past. While I have some cognitive loss I can communicate and function at 90%. I still drive and meet friends at various places within a 6 hour location.

I am very positive regardless of what is expected.