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Glioblastoma with gross total resection.
My husband, 54 years old. He had approx. 12 minute seizure on Sept. 10. They did a CT scan and said that they felt he had a meningioma and it was 100% treatable. He should see his doctor the next day and they should do an MRI just to be sure. The MRI was completed and they told us that they felt he had a high grade glioma. Before that day, there was no indication of anything wrong with him. He had a 2 x 2 x 2 gross total resection on Oct. 3 to his right temporal lobe and they were able to take 1 inch margins around that as well. His tumor had grown 30% in three weeks. It was confirmed that he has glioblastoma. They were able to take 1 inch margins around it. To look at him, you would never know he had surgery. Physically, he is fine. Emotionally though, I notice he is having trouble regulating his emotions with me, especially when he is nervous or anxious about something. Any suggestions or help would be great. Also, any in general things that have helped you as the care provider deal with this emotionally. It’s a lot to be this young and think about all the possibilities. Plus my husband owns his own business and I have that all on my mind as well.
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Also, I forgot to mention that he started chemo and radiation November 6th. He has glioblastoma, IDH wild type and he has a better genetic marker, MGMT methylated type.
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3 ReactionsHe’s young and strong so has better odds of good quality time remaining. Few people live a long time with his diagnosis, but maybe he will be the exception. Nevertheless, you must do two critical things now.
First, be his rock. Find another safe outlet for your fears - go outward. Manage his treatments if/when he cannot.
Second, get prepared for the business and financial responsibilities that are likely to come your way. Hopefully you are already involved in both. If not, have the difficult but necessary conversation with your beloved husband about the need to be prepared if he has a reaction to the treatments that require him to step aside for a while. No need to focus beyond the interim measures needed. He will want a viable business to return to. What needs to happen for that to be the case?
He has received devastating news, so your steadiness is critical for him. Hug him wordlessly often if he takes comfort in touch. Not in your need, but to give him comfort.
Have Hope, for all things are possible.
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7 ReactionsZolof... not sure of the spelling… But it has helped me a lot at regulating my emotions. There are no real side effects except that I don't tear up and get over the top sad during normal conversations about my diagnosis, which is also glioblastoma
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1 Reactionwelcome to the group, there are a lot of great people here and the support is crazy good. as to the over the top thinking the Zoloft works for some , i am not a doctor just a patient , long story short i had a TBI traumatic brain injury, a tumor in the brain and just under the glioblastoma category.
side effects differ from patient to patient, my operation was because mine forced me to get emergency treatment i.e. surgery and mine was shall we say a bit more extensive in that i had more treatments ahead of me. the radiation went spot on and chemo was well a back up plan.
eventually things settle down and you can get into support groups that are pretty awesome. the actual reason i said anything is you need three things, something to live and fight for, mine is my daughters, second if you believe in god, get some prayer groups going they help immensely and last stay in good shape to beat the odds and it also helps with depression setting goals. i hope ypu found something I've said helpful. have a awesome day.
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5 Reactionscourageandgrace, I thought I would check in. How are you doing?
@courageandgrace
How did the radiation/chemo go..
My wife 61 yrs old will begin her 6wk treatment. At KU Med Ctr, Kansas on Jan 8th. She is scared she will go thru all of this just to be sick then sicker. I am struggling to provide some light at the end of the tunnel. I feel with that advent of AI , that some of these new immunology type treatments that have shown small success at total remission could be further confirmed and perhaps with right to try, there be a chance of total remission
We need to buy some time.
I i've just gone through six weeks of chemo and radiation for my glioblastoma. Not much side effects with the treatment until the last two weeks when I was overly tired. In the new year, I'll be doing the op tune and going to Germany for immunotherapy. For the anxiety, I started taking low-dose Zoloft, which helped me regulate my emotions with no residual effects. I don't think I could've made it without some kind of anxiety met. Good luck in the future God bless!
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3 Reactions@mjust, it's only natural that you and your wife are worried. This is all so new and the unknown is scary. I hope you saw the helpful reply from @tarheelchuck, who just completed 6 weeks of chemotherapy and radiation for glioblastoma.
How are you doing as the appointment approaches?
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1 Reaction@tarheelchuck why Germany for immunotherapy. Does Mayo not offer that? I am a newly diagnosed glioblastoma wild type grade 4 and had a successful resection on my right temporal lobe December 9. Wednesday I have my radiation simulation and then let the battle begin.
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1 ReactionThe hospitals in Germany, rated as the best in the world for immunotherapy. The trials in the US run, the possibility of getting a placebo. The cost of treatments in Mexico and Germany are also about half as much as the treatments in the US. My doctor also has a connection to the place in Germany that offer the immunotherapy. Seems like the US is a little behind on the research compared to Germany, TOO.