Glioblastoma: Anyone have difficulty walking, use of legs and arms?

Posted by rachel2025 @rachel2025, Mar 15 9:27am

My husband was diagnosed with Glioblastoma last August, affecting both hemispheres of his brain. He underwent surgery to remove 90% of the cancerous cells from a 5cm section in his right brain. The cancerous cells in his left brain were smaller, but due to their location being too deep, surgery was not possible. He subsequently underwent radiotherapy and chemotherapy. Later, due to cerebral edema, his right leg and right hand became completely weak, he had difficulty maintaining his balance, walking became extremely difficult, and he became very weak, constantly tired and sleepy. Therefore, his chemotherapy was paused for almost three months. His doctor prescribed dexamethasone, currently 6mg daily, and he has also undergone two Mvasi infusions, but there has been no improvement. He still has difficulty walking with his right leg and cannot use his right hand. Has anyone experienced similar problems? What methods can help improve his condition? Is this common issue to Glioblastoma patient? Thank you for any suggestions.

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rachel2025 | @rachel2025 | Mar 29 8:04am

In reply to @colleenyoung "@rachel2025, how did the appointment go last week? Any update?" + (show)

@colleenyoung
Doctor agreed to reduce Keppra from 750mg to 500mg, reduce Dexa from 6mg to 4mg, and prescribed the antidepressants to help my husband's depression, He also suggested the trial of a lumbar drain, but after talking to neurologist (the doctor who did surgery for my husband), he didn't think this procedure was suitable for my husband, nor would it bring him any benefit.

So, we are not sure what's next step our doctor is going to take. I am waiting for him to get back to me. My husband has not been taking chemo pill for 3 months due to his weak condition. Now he can hardly walk and needs to use wheelchair all the time. The PT/OT/Speech therapist should start next week.

Thanks,

Rachel

bj9394 | @bj9394 | 6 days ago

In reply to @rachel2025 "@gbmcaretaker Thank you so much for your reply. I have applied to the doctor for PT/OT..." + (show)

@rachel2025
I got off keppra and started vimpat, what a difference. Completely different mentally.

rachel2025 | @rachel2025 | 6 days ago

Thanks for your response. What's the dosage you are taking?

Thanks,

Rachel

bj9394 | @bj9394 | 5 days ago

100mg of vimpat two times a day.

rachel2025 | @rachel2025 | 5 days ago

Thanks! My husband is taking 75mg twice a day。 However, he recently suffered a minor stroke, which has caused him difficulty swallowing. Therefore, he often cannot swallow his medication completely and vomits it up.

bj9394 | @bj9394 | 5 days ago

I’m just getting started. Just completed first week of radiation done, and start chemo next week. Really nervous.

I hope things get better for your husband.

rachel2025 | @rachel2025 | 5 days ago

I hope radiation and chemo will bring you the best results. Don't be nervous, everything is in God's hands. May He bless and protect you!

Rachel

plousada | @plousada | 3 days ago

Tenho uma grande amiga com glioblastoma há 16 meses, foi operada, fez radio e quimio, teve 2 convulsões. Na 2ª convulsão, quando voltou do hospital, a mão esquerda paralisou, a direita está sempre a tremer. Não consegue fazer nada sozinha, e está cada vez a andar pior. Desiquilibra-se. Toma muita medicação que a faz engordar. Só come e dorme. È muito triste. Não vi por aqui que estas paragens das mãos tivessem a haver com o cancro. Eu penso que terá sido da radioterapia. Será?
Faz fisioterapia uma vez por semana mas não vejo diferença nenhuma. E voces, a fisioterapia faz alguma coisa?

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rachel2025 | @rachel2025 | 3 days ago

In reply to @plousada "Tenho uma grande amiga com glioblastoma há 16 meses, foi operada, fez radio e quimio, teve..." + (show)

@plousada
I believe the paralysis in her hand is related to cancer cells. My husband's got glioblastoma 8 months ago. The tumor on his right side was 90% removed in surgery, but the tumor on his left side was located deep inside and couldn't be surgically removed, causing him to lose control of his right hand and right foot. The medication also caused weakness. Although he could still move his right hand and foot after surgery, they have been slowly deteriorating. Recently, he had a minor stroke, resulting in paralysis on his entire right side.

He has had two short seizures, but hasn't had any more. Due to the stroke, he can't get up, stand, and has difficulty swallowing now, so he's receiving physical therapy (PT), occupational therapy (OT), and speech therapy to help with his rehabilitation. I think rehabilitation is helpful, but the effects aren't immediate or significant. It also requires the patient's cooperation and continuous practice.