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Glioblastoma Multiforme and Cognitive Loss

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

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@tanyabaust

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.

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Replies to "Hi Scott, I just joined this group. It is interesting to read your posts especially about..."

Hi, @tanyabaust. Welcome to Mayo Clinic Connect. Thanks for sharing about your diagnosis and your treatment experiences with glioblastoma.

Hoping that members like @IndianaScott @nursnis @johns66 @coachconnors will return to this conversation and share about their journeys personally or with a loved one with this cancer, and offer some support. They may also have seen the loss of language and sluggish movements you've mentioned when you feel you've done too much.

You talked about being very positive regardless of what is expected. Will you share more about how you do that?

Hi @tanyabaust Welcome to Mayo Connect. I am sorry to read of your difficult healthcare journey. I sincerely respect your ability to maintain that critical level of Positive Mental Attitude!

That PMA can add so much quality to the days! Congrats!

That is so very cool you continue to visit friends! Chronic illness can be so isolating that friendships, near, far, and e-friends can be more valuable than gold!

Please also extend my hello to your husband!

I look forward to your next post!

Strength, Courage, and Peace