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

You are very brave. My heart goes out to you. Thank you for sharing your story.. I wish you and your family the best…
My husband is on his chemo main ( 5 dys on, 23 off)
His gbm was in left parietal area. It was totally resected in July. He had IMRT raf. ( proton) and Temodar..
He’s had 2 MRIs and they’ve been clear, his next one is 3/25. He’s nervous about it, however, hes doing well and tolerates the Temodar well. He gets tired but he has a little more energy than when he did radiation.
We, too, count our blessings and realize a higher being is in charge of our life.. we are being positive and living well, enjoying simple things in life, the outdoors, nature, ice cream,mpizza, walking…
He is 71 and I’m 67…
Bless you and your family.
Thanks for the positivity…don’t give up!

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.

I am so glad I found this forum ! My husband had a mass removed a month ago. It was glioblastoma. Waiting for the cancer center to get him going with radiation and the chemo pill. He is feeling great and seems to be taking this better than me . He is 75 and has always been healthy ! I have been so hesitant to even look online to learn more. Afraid of what I will read ! I do know it is aggressive . But something led me here and I am glad !

Welcome, @beth1952. Did your husband start treatment since you last posted? What type of radiation and chemo will be be doing? How are YOU doing?

Both of you have the right attitude: enjoy each day and focus on the present! Try to embrace the “new normal” and focus your energy on what brings you and your loved one joy. For us, that is family, our closest friends, faith, and getting outdoors as much as possible. With my husband’s limited energy (he was diagnosed in Nov 2022) we work to prioritize our time and set an intention every day to make it the best day possible, whatever that means for that particular day.

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.