Mayo Clinic Connect
Has anyone experienced removal of a temporal lobe Glio with cognitive loss at surgery – not to recover cognitively, but better physically? Would like to discuss that aspect of that diagnosis
Liked by Scott, Volunteer Mentor, Dawn, Alumna Mentor, Leonard
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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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.
Liked by Colleen Young, Connect Director, Scott, Volunteer Mentor, Lisa Lucier
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?
Liked by Scott, Volunteer Mentor
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
Liked by Colleen Young, Connect Director
Unfortunately, this methylated GMB blog journey for me has not been shared with my family yet. I want to be positive 100% with my family and friends and don't want to bring anyone down, including myself. Life is too short to be depressed with the real world! It has made me so sad and a little depressed to communicate with this site. I have spend most of the day just watching tv until 5pm when I joined friends at the pool.
To be fair this may be the perfect communication for caregivers but I am not sure it's for me. I am far from perfect but if you think I am wrong please set me straight. I would like to share my experiences with other methylated GMB patients or how to help my carrgiver who is great but occassionally frustrated with pure miscommunications. Sometimes we argue when it's totally avoidable.
I will take anyone's advise to help me and my caregiver. I love him more than my life! Honestly I would forfeit my life if it would ease his future. We are 65/62.
Hi @tanyabaust As a longtime caregiver I can attest to those times of frustration and arguments. They can arise at anytime in our lives, but especially when one is chronically ill or being a caregiver. It happened to me many times. None of us can be cheerful all the time.
What do you worry about easing for uour husband in the future?
Hi @tanyabaust, I'd like to add my welcome. We have many patients living with cancer taking part in discussions on Connect, as well as caregivers. Your sharing your experiences about living with methylated GMB will be welcomed by other patients and caregivers alike.
I think you might also appreciate this discussion in the Cancer group:
– Talking Frankly about Living with Advanced Cancer https://connect.mayoclinic.org/discussion/talking-frankly-about-living-with-advanced-cancer/
Thanks for asking Colleen. She is back in a home and her left side is immobile – we think she may have had a TIA last week and that is what caused the stroke like symptoms. She sleeps about 18 hrs/day now. Doesn't talk a lot, but still knows us all. Has to be totally cared for – does eat, but makes a huge mess and always needs help. It is so very sad to see her like this. I guess it's all the normal progression. I hope peace will come to her sooner rather than later.. Very tough to see her husband and siblings watch her also.
Hi, @nursnis – thinking of you and your sister today. Wondering how she is doing?
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