Anyone dealing with brain cancer

My husband was diagnosed with a glioblastoma 6 weeks ago. He had surgery at Mayo Phoenix. He started radiation (Proton Beam) and low dose Temodar this week. We are considering the Optune cap. Would like more information on what to expect.

@dconway817, I hope you saw @kylebar's helpful reply to you.

How is your husband doing on treatment? How are YOU doing?

@dconway817, I hope you saw @kylebar's helpful reply to you.

How is your husband doing on treatment? How are YOU doing?

I am sorry to read that your husband was diagnosed with GBM. We were never offered the Optune Cap. I have read others talk about it though. I think you have to wear it 18 hours a day. It’s very uncomfortable from what I have read. And it leaves sores on the skin. That’s about all I know about the cap. The big issue we dealt with was his sodium levels were being depleted by the cancer. And the hospital wasn’t keeping a good check on that. They started giving him sodium tablets during his first day in the hospital and got his levels up to normal. I asked when he came home with me what I should be giving him to keep a sodium levels normal. They told me I didn’t need to worry about it because they had adjusted them and he was fine. I found that hard to believe because they told me the cancer constantly depletes the body of sodium. He was only home for about six days and he started not doing well so I rushed him to the ER and his sodium levels had been depleted again. After a few days in the hospital, they had them back to normal. And again they sent me home and didn’t tell me what to give him. Again, I took him to the emergency room because he was not doing well. And once again they gave him enough sodium to get him back to normal. When he came home that time m, I demanded to know what level of sodium or what I should be giving him to keep his levels normal. They finally told me to give him 6 g of sodium a day. That worked pretty well, but then he started getting pneumonia and was admitted to a different hospital and they didn’t listen to me about the sodium and we started it all over again. So be sure to ask about sodium and what to give him if that’s an issue. He took TMZ even though he didn’t have the good receptors to where it would attach and kill the cancer more effectively. Obviously it didn’t work very well. He did brain radiation of some sort. After about seven sessions, he became bedridden because it had just fried his brain so much. He lived 107 days after he was diagnosed. He also was 76 and not in the best of hell so that didn’t help fight the cancer much at all. I know of someone who was diagnosed in his early 40s and he still living five years later. I also recently met someone who was 60 and was diagnosed when he was 45 and he has never missed a day of work through all the treatments and surgeries and he’s still doing great. So there are a few success stories. Unfortunately, they are few and far between. My best advice I give to people who have a spouse who was diagnosed the GBM is not argue with them. Try your best to enjoy your time with them as much as possible. You never know how much longer you have with them. Also, you have to realize the cancer is destroying their brain which makes their ability to function and think clearly difficult for them. If you have any more questions, feel free to ask. I wish you both the best. One last thing. Hopefully you have some good friends and family members who will support you through all of this. I had a couple of friends who I was really relying on to support me and they ghosted me eventually. I had known both of them for many many years. I never thought they would abandon me in my time of grief.

I am sorry to read that your husband was diagnosed with GBM. We were never offered the Optune Cap. I have read others talk about it though. I think you have to wear it 18 hours a day. It’s very uncomfortable from what I have read. And it leaves sores on the skin. That’s about all I know about the cap. The big issue we dealt with was his sodium levels were being depleted by the cancer. And the hospital wasn’t keeping a good check on that. They started giving him sodium tablets during his first day in the hospital and got his levels up to normal. I asked when he came home with me what I should be giving him to keep a sodium levels normal. They told me I didn’t need to worry about it because they had adjusted them and he was fine. I found that hard to believe because they told me the cancer constantly depletes the body of sodium. He was only home for about six days and he started not doing well so I rushed him to the ER and his sodium levels had been depleted again. After a few days in the hospital, they had them back to normal. And again they sent me home and didn’t tell me what to give him. Again, I took him to the emergency room because he was not doing well. And once again they gave him enough sodium to get him back to normal. When he came home that time m, I demanded to know what level of sodium or what I should be giving him to keep his levels normal. They finally told me to give him 6 g of sodium a day. That worked pretty well, but then he started getting pneumonia and was admitted to a different hospital and they didn’t listen to me about the sodium and we started it all over again. So be sure to ask about sodium and what to give him if that’s an issue. He took TMZ even though he didn’t have the good receptors to where it would attach and kill the cancer more effectively. Obviously it didn’t work very well. He did brain radiation of some sort. After about seven sessions, he became bedridden because it had just fried his brain so much. He lived 107 days after he was diagnosed. He also was 76 and not in the best of hell so that didn’t help fight the cancer much at all. I know of someone who was diagnosed in his early 40s and he still living five years later. I also recently met someone who was 60 and was diagnosed when he was 45 and he has never missed a day of work through all the treatments and surgeries and he’s still doing great. So there are a few success stories. Unfortunately, they are few and far between. My best advice I give to people who have a spouse who was diagnosed the GBM is not argue with them. Try your best to enjoy your time with them as much as possible. You never know how much longer you have with them. Also, you have to realize the cancer is destroying their brain which makes their ability to function and think clearly difficult for them. If you have any more questions, feel free to ask. I wish you both the best. One last thing. Hopefully you have some good friends and family members who will support you through all of this. I had a couple of friends who I was really relying on to support me and they ghosted me eventually. I had known both of them for many many years. I never thought they would abandon me in my time of grief.

PS, my husband is doing pretty well. He has 4 more proton bean radiation and 5 more days of low dose chemo. Then a month off.

Thank you for the information. It sincerely helped! Good luck to you

My husband is going through the same thing, only we've completed the radiation and low dose chemo, had a month off, then 5 days of higher-dose chemo. We are now closing in on the 28 days of no meds to start TMZ again for 5 days.

He got a bit nauseous, but really tolerated the TMZ quite well.

He wears the Optune arrays for about 21 hours a day most days. We end up having to change them sometimes twice a day because he's an outdoor guy and sweats through them.

My husband turned 61 last month. He remains very active, though is slowing down and takes frequent rests.

Good luck to you and yours!