Brain tumor removed now expectations with recovery, radiation, work

Hello.

I have a glioma of the brainstem. I had a biopsy in Aug 2022, resection isn't possible. I had 6-weeks of radiation, ending mid-Nov. I am still recovering. Do be patient with yourself. I still have fatigue, and nausea... Food didn't taste good and really still does not. I went back to work in January. I'm remote too. Luckily, they 're-onbarded' me. I couldn't have taken on clients and am just starting to take some on now. I also had a lot of follow-up appointments to try to squeeze in - acupuncture, PT, and mental health support...

Like the doctors say, it's all about the real estate with brain tumors so our experiences can vary greatly. Where is your tumor?

I may be starting chemo in the upcoming months. We will see. I'm dreading the thought.

I have to run. I am visiting my aunt in Portland and she is waiting. 🙂 I am happy to connect.

Marjorie

Hi there. How are you doing after treatments?

How are you all doing? hoping it is working out for you...many prayers always.
wondering if any of you are having ummm....brain changes? memory, concentration, losing words, feeling like you aren't as smart as you used to be? those sorts of things? I really need to talk to someone that understands what I am experiencing. I've been through different sorts of therapy and I'm lost. they say it won't get any better, I just need to figure out how to deal with it. I hope you are not experiencing this but I'm hoping someone that is, sees this and connects with me. Prayers and best wishes to everyone reading this.

@nadine514 , welcome to the group. And yes i have had a lot of what you are talking about, I've been in numerous locations where 1 on 1 has helped and have learned a few tricks that work besides prayer, i thank god every day I'm above ground another day to make someone smile and maybe i can pass on something that will brighten their day. I am also a survivor of a nasty brain tumor, cancer to boot, no cancer last checks, but god. and have had to learn to think of what i wanted to say, sometimes that takes a minuet, i ask them to be patient. most are and some just get frustrated. i loose focus on thoughts and a lot of times leave things not finished. i quit brow beating myself somewhat that helps. feel free to call me , 434-298-7117. my doctors told me a lot of the same but have developed a rhythm that kind of works for me. ill be 69 next month, had some great news today, heart is going strong. have a Blessed day.

Ps you need someone that you can make yourself brain wise to fight for to show that you are making headway no matter how small a feat but you just did what they said you wouldn't be able to do.im one of those that I'm going to improve, watch me , hear me roar, ha ha its a beautiful day to be alive. blessing your way.

I went through something similar. My Glioma was a pediatric high grade glioma and was listed as grade 4. Even had it tested twice, same results.

I had surgery to remove as much as they could. I felt great and amazing, but docs said I need radiation and chemo to ensure all is getting treatment.

So I did very targeted radiation over 6 weeks. Felt great. Even other special docs said surgery and radiation is best. They all said chemo was just a cherry on top but a nice extra...

I was doing great until chemo. Had them take me down to lowest level for my situation. They did and it felt better, but man did it make me tired, weak, gave me bad joint pain, and back pain that wakes me up early and forces side sleep, even after being off of it for a year. Problem with side sleep is that it puts pressure in my head and makes me unbalanced and slightly in pain.

I wish I would have skipped that considering my situation, but I wanted to be extra sure.

And it has worked out. MRIs over the last year and a half since surgery and no growth at all. So it's a major win to still be kicking but a nagging problem on other issues.

Like you, I also work from home so it's good to hear. My wife does all the driving and even though I am looking good, we are getting a new home in the area to be close to Mayo for the best team going forward.

Hope everything works out for you and feel free to send any questions. Also, be sure to join the monthly video calls they run.

@randallshields56 Sending love and blessings for your continued recovery. I only have a small tumor and experience some of the same things you describe. Very frustrating but do not let it be embarrassing. I just stick up a finger - “just a moment” until I find my words. People who count with you will understand.

Hi @nadine514, you're not alone. I hope you saw the helpful replies from @randallshields56 @coreythomas and @dollyjaneprenzel.

Nadine, how are you doing today?

@randallshields56 you asked any changes with the increase , its been a bit but yes, concentration and dizziness looking to much above my head, i can lower my head for periods of time but like looking to locate planes going over or hanging the shower curtain holders i can get a little unstable. looking to close at something can also produce pain behind my eyes, i have to back away or rest my eyes for a few seconds to back off the eye strain. those have all taken place within the time frame of the increase of the X copri i was at 75 mg a day now at 100 mg

It's great you're checking in on people, it's special