Side effects from medication or progression of glioblastoma?

Hi,

I don't necessarily have the answer to your question but I am in a similar situation, in that my husband was newly diagnosed with Glioblastoma Grade 4 on May 9 according to a needle biopsy. His tumor is sitting in between the sensory and motor cortex and his original symptoms (we went to the ER on April 21 because we thought he had a stroke) included speech difficulty, right-sided facial paralysis, and right-sided facial twitching. No other symptoms - balance was fine and no seizures. Between May 9 and June 11, his speech became increasingly challenging to understand and at times he could not speak at all. He had a craniotomy on June 11. It was successful and the neurosurgeon was able to remove about 80% of the tumor. Since then he has felt much better and his speech has improved. We know the tumor will grow back so we are headed to MD Anderson in Houston next week to find out what the next stage of treatment will be (we live in Austin, TX and a neurosurgeon in town not affiliated with MDA did the craniotomy). My husband was given Keppra after the May 9 biopsy but had side effects he could not tolerate that included inability to think well (he felt foggy), fatigue, depression. When he stopped Keppra he felt better. After the craniotomy on June 11 they prescribed a different seizure medication (I don't recall the name of it). He couldn't tolerate that one either and stopped it. So, I definitely think the medication could be causing some of the problems your husband is experiencing and it's worth asking about. Medications can be helpful but can also cause so many side effects that they can feel worse than the original ailment. Maybe your husband's doctor has another alternative to Keppra that will work better for your husband. Because my husband was prescribed the seizure medication proactively and had not had any actual seizures he felt like he wanted to try to go without it. He feels much better when he's not on it. From what I have read, Glioblastomas can grow back quickly, depending on the person, so I think tumor regrowth after surgery could also cause symptoms, in addition to the medication. I am no doctor, of course. I just wanted to share my experience. Because I am just beginning this journey with my husband, I am also curious to hear others' experiences. I am trying to remain positive despite the fact that "Google" does not provide much hope for this condition. My husband is willing to try any clinical trials that MDA offers so I hope they have something to offer. Best wishes to you and your husband.

Thank you Nina for your helpful thoughts. Today the doctor took my husband off the seizure medication, Keppra, since he has not had seizures since the surgery. But he is back on a low dose of steroids to prevent any inflammation that may be causing the symptoms. The doctor thinks this change will alleviate most of the symptoms for now. Wishing you and your husband peace and wellbeing.

Glad to hear the doctor was willing to take your husband off the medication and I hope being off the Keppra helps your husband.

I have a GBM 4 diagnosed after surgery on 5/9 this year. I was already on keppra long term for past history of multiple meningiomas. I started chemo and TMZ on 6/7. So I am 3 weeks in today. Fortunately my only side effects have been fatigue later in the day. I can’t help but wonder if your husbands don’t have more going on? I am no doctor but again, there is such a variety of symptoms they are experiencing. I am happy to be able to say my symptoms thus far are mild but of course, there are still 3 weeks of treatments left.

pnf24, thanks for the reply and so glad you are having only mild symptoms. We are taking things a day at a time and will see if the recent medication change results in reduction of symptoms. Wishing you the best. Joan (naoj).

My wife had her left front lope removed but did not take Keppra. She had not side effects from the radiation treatments or chemo pills. She took an anti-nausea pill 1 hr. before the chemo pills and did not ever get sick.
I wasn't until about 1 year after her surgery that her balance started to be a problem and now, 15 months later, is using a walker.
GBM 4 is a bastard, you know what the end will be put don't know when it will happen. Many ups and downs along the way.
Bob

Thanks Bob for your reply. We will try to enjoy and have gratitude for the ups along the way. Last night was difficult (much confusion along with incontinence) but the sun is coming up this morning.

@naoj, checking in. How are you and your husband doing?

Thank you Colleen for checking in. Ups and downs are good descriptors of this illness. The doctor took David off the seizure medication and put him back on steroids. In a few days David had two seizures... so back on seizure medication. Some side effects but overall doing alright. Today is a good day. Grateful!

I am sorry to hear that your husband has GBM. My husband was diagnosed April 1, 2022 with it and passed away July 17, 2022. It was difficult watching him decline. GBM is a tough cancer to deal with. I keep reading that some improvements are being made in the way they treat it but it still is a very aggressive cancer and I am sure you know the outlook isn’t good. I actually grew up in the Austin area. I live in Chicago now. I wanted to take my husband to MD Anderson in Houston to see what they might have been able to do but he was in no shape to travel. He had been having some symptoms for a few months before he was diagnosed. When they finally diagnosed it, it was pretty bad. He actually had two tumors and he had a craniotomy but the doctor didn’t remove any of the tumors because he said they would just grow back and probably more quickly. So we only radiation and chemo for treatment. I personally think the radiation killed him quicker. He went downhill so fast after the radiation was started. Plus he didn’t have the better receptors for the chemo so the chemo did little I think. Sorry to be such a downer but you wanted to know other’s experiences. Ours was not good but some do have better experiences from what I have read. One thing I will say….dont argue or get upset with him about anything now. He is going through a lot. Just be there for him and comfort him as much as possible and be supportive. I wish you the best.