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Caregiver for mom with glioblastoma

Posted by whunter88 @whunter88, Feb 26 11:55am

Hi all, I’m new to this support group and just wanted some insight on my mom’s current condition.
My mom was diagnosed with glioblastoma Jan 2024. She had surgery to remove her 6cm tumor in the right side and did 6 weeks of radiation and chemo.
The tumor came back in Oct 2024 on the left side which is non operable. Currently she does Avastin infusion every 2 weeks and Lomustine every 6 weeks.
I tried to do as much research as possible, but hearing other experiences might help me understand my mom’s current situation better.
She started to decline in Nov where she need assistance to walk and shower. She can’t get in bed on her own, she can’t have any kind of convo and have dementia behaviors.
I was not prepared for this when the Oncologist shared that it will come back. I guess when it was on the right side she only had balance issues and now it grew back on the left side which is more cognitive functions.
I get really emotional when I see how she is now…just blank stares and clueless. She sleeps all day and only up for breakfast, lunch and dinner.
I was hoping she would have some improvements when she started her treatment, but no change.
Is this the norm and my mom won’t get her cognitive functions back with treatment?
Thank you guys for taking time out to read this long post.
I wake up every day being as positive as possible, but there are days that I break down a little. I’m grateful for my husband’s support as we moved my parents in after her first diagnosis.

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royce | @royce | Feb 26 4:21pm

Welcome, my wife had Avistin and had side effects. Everyone is different, but her side effects were high blood pressure, pain in feet and hands, frozen shoulders, and tiredness. That makes it hard for sleeping due to shoulder and other pains. She continues on Avistin until September one infusion every three weeks. We went to the Orthology clinic and will do another Scan to see if she can receive cortisone shots in her shoulders. Physical therapy sessions will follow and we have been to two sessions already. We do some physical therapy at home based upon what the PT said. She stays as active as she can stand in order to get over the pain and stiffness. It will also speed up recovery after the Avistin is over. Hope this helps.

REPLY
1 reply
markymarkfl | @markymarkfl | Feb 26 7:33pm

My mom was diagnosed w/ grade-IV ("lemon-sized?") glioblastoma at age 72 in 2009, and passed away 3 months later. She already had myasthenia gravis, and was treated at a small-town hospital, so I can't say she got world-class care and she was already a patient with a challenging co-morbidity. 🙁

Her tumor was primarily located in a region of the brain known as "Broca's area" (left frontal lobe), which "plays a crucial role in language production and comprehension. "

The surgeon who performed her biopsy was not able to remove much tumor, but he also picked away a pieces of it, leaving what I later heard described as "wounded tumor syndrome."

She was treated with chemo (Temodar) and radiation (CyberKnife), which only provided very modest tumor response, definitely not worth the side effects. As far as radiation side effects, if radiation is recommended, I was ask if a newer, more focused type such as proton beam is appropriate and available. I'm not up to date on glioblastoma treatments, but you might inquire if clinical trials or other modern treatments (minimally-invasive laser ablation?) are available. I remember reading this or a similar encouraging article while my mom was undergoing treatment: https://healthexec.com/topics/patient-care/precision-medicine/new-mrilaser-probe-may-help-pinpoint-kill-brain-tumors
Other info that may be helpful:
https://case.edu/medicine/neurosurgery/news-events/news-releases/new-minimally-invasive-mri-guided-laser-treatment-brain-tumor-found-be-promising-study
https://my.clevelandclinic.org/staff/531-gene-barnett
Because of the impact to her Broca's area, there was a lot of difficulty in communicating. In hindsight, I wish there had been a lot more input from a speech therapist and other neurologists who could have help her communicate with the rest of the family.

A lot of times it was not clear to us if she was simply misinterpreting what we said, or struggling to get out words that made a sensible response. I would hope that in the year 2025 her hospital, doctors, and therapists are able to use technology like iPad tablets and so on in a multi-modal approach to facilitate communication; e.g., providing read/written, tapped (on tablet), and other visual means (even blinking eyes or nodding/shaking head for yes/no answers) as redundant methods to verify important communications.

As someone who helped care for a late-stage glioblastoma patient, I can honestly say I'm happy to only have stage-IV pancreatic cancer. Glioblastoma is a tough road, and my most fervent and sincere prayers are being lifted up on your behalf.

REPLY
1 reply
whunter88 | @whunter88 | Feb 27 6:25am
In reply to @royce "Welcome, my wife had Avistin and had side effects. Everyone is different, but her side effects..." + (show)
@royce

Welcome, my wife had Avistin and had side effects. Everyone is different, but her side effects were high blood pressure, pain in feet and hands, frozen shoulders, and tiredness. That makes it hard for sleeping due to shoulder and other pains. She continues on Avistin until September one infusion every three weeks. We went to the Orthology clinic and will do another Scan to see if she can receive cortisone shots in her shoulders. Physical therapy sessions will follow and we have been to two sessions already. We do some physical therapy at home based upon what the PT said. She stays as active as she can stand in order to get over the pain and stiffness. It will also speed up recovery after the Avistin is over. Hope this helps.

Jump to this post

My mom has no side affects from Avastin, but wished that it would help with her cognitive functions.
She’s had 4 doses already and she’s the same.
Thank you for sharing your story.

REPLY
whunter88 | @whunter88 | Feb 27 6:32am
In reply to @markymarkfl "My mom was diagnosed w/ grade-IV ("lemon-sized?") glioblastoma at age 72 in 2009, and passed away..." + (show)
@markymarkfl

My mom was diagnosed w/ grade-IV ("lemon-sized?") glioblastoma at age 72 in 2009, and passed away 3 months later. She already had myasthenia gravis, and was treated at a small-town hospital, so I can't say she got world-class care and she was already a patient with a challenging co-morbidity. 🙁

Her tumor was primarily located in a region of the brain known as "Broca's area" (left frontal lobe), which "plays a crucial role in language production and comprehension. "

The surgeon who performed her biopsy was not able to remove much tumor, but he also picked away a pieces of it, leaving what I later heard described as "wounded tumor syndrome."

She was treated with chemo (Temodar) and radiation (CyberKnife), which only provided very modest tumor response, definitely not worth the side effects. As far as radiation side effects, if radiation is recommended, I was ask if a newer, more focused type such as proton beam is appropriate and available. I'm not up to date on glioblastoma treatments, but you might inquire if clinical trials or other modern treatments (minimally-invasive laser ablation?) are available. I remember reading this or a similar encouraging article while my mom was undergoing treatment: https://healthexec.com/topics/patient-care/precision-medicine/new-mrilaser-probe-may-help-pinpoint-kill-brain-tumors
Other info that may be helpful:
https://case.edu/medicine/neurosurgery/news-events/news-releases/new-minimally-invasive-mri-guided-laser-treatment-brain-tumor-found-be-promising-study
https://my.clevelandclinic.org/staff/531-gene-barnett
Because of the impact to her Broca's area, there was a lot of difficulty in communicating. In hindsight, I wish there had been a lot more input from a speech therapist and other neurologists who could have help her communicate with the rest of the family.

A lot of times it was not clear to us if she was simply misinterpreting what we said, or struggling to get out words that made a sensible response. I would hope that in the year 2025 her hospital, doctors, and therapists are able to use technology like iPad tablets and so on in a multi-modal approach to facilitate communication; e.g., providing read/written, tapped (on tablet), and other visual means (even blinking eyes or nodding/shaking head for yes/no answers) as redundant methods to verify important communications.

As someone who helped care for a late-stage glioblastoma patient, I can honestly say I'm happy to only have stage-IV pancreatic cancer. Glioblastoma is a tough road, and my most fervent and sincere prayers are being lifted up on your behalf.

Jump to this post

I’m sorry for the passing of your mom.
My mom had the same treatment but when it came back we did 5 sessions of Palliative radiation which is more targeted.
It came back on the left back lobe which is also cognitive functions.
She’s starting to be less alert and takes longer to get her attention.
Thank you for sharing.

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