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Glioblastoma: My husband's journey, what's yours?

Brain Tumor | Last Active: Mar 30 7:01am | Replies (20)

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@onewyldbeemer

Hello all! I have not been on this site since September. Hope everyone is doing well.

Just a quick catch up, my name is Michael A. , 50 years old and was diagnosed November 1, 2022. I first went in to the emergency October 30, 2022 with extreme headaches and at first we thought it was only hey migraine, but after going through the CT scan, they found a mass on the left side of my brain. So then I ended up staying at the emergency and two days later had the tumor removed which was the size of 5 cm. After that I did go through, the typical standard of care, chemotherapy and radiation then had a month break and then started my six months of chemotherapy. At first we thought everything was good until I started noticing the symptoms again with my balance and my legs. We ended up going to MD Anderson in Houston, Texas , and they did not find anything at that time. That was back in March of last year. As the symptoms grew, we ended up finding the Mayo Clinic and took a trip to Phoenix campus May 2023. They did find a lot of necrosis which was caused by the first surgery and chemo and radiation. So we thought we were OK with no tumor, however, in August 2023 they did find a 1 cm tumor. So this past October, we had that removed and started on a clinical trial. I just got back from the Mayo Clinic this past Friday , and unfortunately, the clinical trial medication did not work and they found a third tumor. Despite all this, we still have faith in our Lord Jesus Christ that He is doing a good work and will lead us down the right path to victory! It so happens that my oncologist where I live here in Texas happen to be certified for Optune. So we are meeting with her next week to go over the details and to get me started on that. I am hoping it works because we have heard good things about Optune, however, we do know that it’s going to be something I will have to wear for the rest of my life to keep the tumors at bay. We have also looked into RSO as a therapy, but being that we live in Texas cannabis is illegal, but we do have some places next-door in New Mexico that do sell cannabis. We are looking at that as another alternative in conjunction with the Optune plus exercising and eating well. My family and I know God is in control and we ultimately leave everything in His hands . So I wanted to encourage anybody going through the same thing I am going through, do not give up! I told my family I are not going to give up until the good Lord tells me to come home.

God bless you all going through this trial and God bless all the caretakers that are standing by as well.

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Replies to "Hello all! I have not been on this site since September. Hope everyone is doing well...."

Welcome back, @onewyldbeemer. Good to hear from you. You might wish to check out this related discussion:
- Glioblastoma (GBM) trials and therapeutic devices (Optune)
https://connect.mayoclinic.org/discussion/gbm-trials-ttfields-brain-device/
How are you doing with Optune?

My daughter was diagnosed with GBM in 2019 at the age of 39. Had surgery removed most of it. Had no deficits post op. She had standard of care temodar, radiation therapy and trials that really have helped. She was to start the Tango Therapeutics trial, but it has a very specific criteria that she did not meet regarding her DNA sequencing. She never had a seizure until 6 months ago. She is on Keppra. She started in Avastin. No side effects so far. Does anyone have any experience with Avastin? I would love to hear about your experiences. Stay positive. Tons of research going on!