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Side effects from medication or progression of glioblastoma?
My husband, David, had surgery to remove a tumor in his frontal lobe on May 10th this year. The biopsy presented with Glioblastoma Grade 4. The surgery was successful in removing the tumor and he is now on the standard protocol of radiation and Temozolomide. He is beginning his 4th week of radiation. He has also been taking Keppra for seizures since his stay in the hospital for surgery. His symptoms now include bladder incontinence, blurry vision, poor balance (fell in grocery store), shaky hands (can't write and trouble holding fork to eat), poor sleep, some periods of confused thinking , and edema in face and feet (finally off steroids, so this may be improving). I know as the illness progresses these symptoms and more will occur. But wondering if the present symptoms are from the seizure medication, changes in the brain or treatment. Any thoughts or experience with these symptoms?
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My husband has Glio and has seizures due to it even though he had surgery. He started to have a feeling of seizure everyday., like a bad aura. If he took .25mg of Alprazolam it dissipated. We found and Epileptologist and he is now on a regimen of Lacosamide and one dose of Clonazepam a day. He said the Clonazepam really helped him smooth out what he was feeling. Also I fought with the insurance to get a packet of Nayzilam (sp) . It's a rescue medicine for cluster seizures. It is a one dose nasal spray. We had to use it on one occasion and it really works. We carry it with us when we go out. It's a nasal one time dose of Valium.
I hope this helps. It is not meant to be medical advise.
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2 ReactionsHi,
Thanks for responding. I’m so sorry to hear about the course of the disease for your husband. I understand it’s a possibility. I am so thankful we found a neurosurgeon who was willing to operate and who did an excellent job. That bought us time to get to MD Anderson, where I hear they can employ all kinds of tricks in these dire cases. We have a 16-year old so I’m remaining positive for her sake. Your advice to not argue or get upset is a good reminder for me, thank you. I will take that to heart and enjoy the time we have left.
Best, Nina
Have the doctors give any sort of a prognosis. They never gave us any. But I knew he didn't have much time left. He was "OK" for the first month after he was diagnosed. He couldn't walk much and mostly stayed in bed but he was still able to function a bit and talk to me which I enjoyed. But the last six weeks or so he was bedridden which was hard for me to see. He always knew who I was up until the last minute which was comforting. I stayed with him until the very end. He was always afraid of dying alone. I am curious how the things MD Anderson might do for your husband will work. Hopefully they can extend his life and quality of life for a while.
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1 ReactionMy husband stopped them from giving any prognosis. He’s an ultra positive person and didn’t want to hear about it, at least initially. His symptoms are actually quite mild overall and the tumor was small to begin with so we’re hopeful that additional treatment will help. We will find out more about the treatment plan tomorrow when we meet with the MDA neuro oncologist. That must have been so hard for you and your husband, to have lost him so quickly. I hope they can find better treatments for people with glioblastoma and if we are able to tap into any clinical trials at MDA I will update.
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1 ReactionBill was diagnosed 9/11/23 after suffering a terrible headache. He had the tumor removed causing some additional vision issues that looking back he had before diagnosis. Recovery from craniotomy was good, so started radiation treatment for 3 weeks. Has been on oral chemotherapy since January, 5 days each month. He is tired from treatment but overall handling it well. Chemotherapy dose was increased at 6 months since he had been tolerating initial dose well. His biggest complaint is not driving and trying to stay on task. We live MRI to MRI….but thankful for the continued progress and care receiving at Mayo.
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1 ReactionYour situation sounds much better than ours did. I knew the moment they called me in the waiting area after the surgery that he wouldn’t live long. We went into the surgery alert knowing he had two fairly large tumors. They didn’t know what type they were so they did the craniotomy to see what type of tumors they were. For the surgery, they said they could just go in there and remove them and he would be fine. But they discovered they were GBM. Since he wasn’t in the best of health I knew he wouldn’t have long.
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2 Reactions( to kylebar) My heartfelt condolences for the loss of your husband. So quickly. Thank you for the good advice. I will try with all my might to be as supportive as possible.
Two large tumors is a lot for a body to deal with. So sorry.
Good to hear that treatment is working for him thus far. I hope it continues that way. Is he unable to drive because of seizures?
Yes, unable to drive because of seizure risk... also TN state law if a person has history of recent seizures. Hard for him to give up that independence, but grateful that I can drive him where he wants to go.