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

You are not alone. My husband’s first symptom was weakness in his right hand and leg, and it has not improved in the 15 months since it started. Due to the location, his tumor was inoperable, and he went through chemo and radiation. Currently he has difficulty speaking. His care includes the same infusions every 3 weeks, he is taking 3 mg of Dexa and a weekly chemo pill, OT, PT and speech therapy.

So I would say yes, that what your husband is experiencing is common for GBM and it seems to depend on the location of the tumor. We started off and diagnosed at MD Anderson, which did not offer much after his initial treatment. After searching and going to a few other places, we landed at Mayo in Jacksonville and I can’t tell you how grateful I am that we found an amazing care team here. I wish we would have found it sooner. We are taking one day at a time and make the best of every moment.

Though my friend, Daniel, got no treatment, he did experience gradual loss of legs and hands. My heart and prayers for you and your husband. Louis

@gbmcaretaker
Thank you so much for your detailed reply. It has given me a better understanding of this condition, and I no longer blame the medication for being ineffective or the doctors for not having better treatment options.

Are your physical therapy (PT), operational therapy (OT), and speech therapy sessions once a week? Are they helpful?

Does your husband takes Keppra twice a day for seizure as well? Does he has any depression side effects?

Thanks,

Rachel

@rachel2025
The frequency of PT, OT and Speech has fluctuated but once a week for each would be beneficial. We have jumped around to difference places because it’s so hard to find physical therapists that specialize in neuro. It’s hard to get appointments sometimes, but if they have experience with stroke patients or neuro it’s worth the wait. For speech, I was happy with Expressable which is virtual, but it was not covered by our insurance.
He was prescribed Keppra and had stopped taking it but then in January he had a seizure for the first time. So listen to your doctor and take it if needed. He is now taking vimpat twice a day and he hasn’t had any more seizures.

That’s good and seeing the therapists will be good for both of you. They provide good tips for daily care, dressing and transfers.
I did not notice a difference but overall I would say that his mood is flat. I think Keppra is first line treatment but you could discuss Vimpat with your doctor to see if it will help. MD Anderson suggested Trintellix as an antidepressant, which passes the blood brain barrier. You could also ask your doctor if that would help.

@gbmcaretaker
Thank you so much for your valuable reply and suggestions. Your advice was very helpful. We are going to see the doctor today, and I will definitely ask him about your suggestions.

Thanks,

Rachel

You are not alone. My husband’s first symptom was weakness in his right hand and leg, and it has not improved in the 15 months since it started. Due to the location, his tumor was inoperable, and he went through chemo and radiation. Currently he has difficulty speaking. His care includes the same infusions every 3 weeks, he is taking 3 mg of Dexa and a weekly chemo pill, OT, PT and speech therapy.

So I would say yes, that what your husband is experiencing is common for GBM and it seems to depend on the location of the tumor. We started off and diagnosed at MD Anderson, which did not offer much after his initial treatment. After searching and going to a few other places, we landed at Mayo in Jacksonville and I can’t tell you how grateful I am that we found an amazing care team here. I wish we would have found it sooner. We are taking one day at a time and make the best of every moment.