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

Hi! I am in the same camp as you. My husband was diagnosed in December 2023. Had surgery a 10 days after discovery of tumor, 90 percent was removed. He just completed 6 weeks of radiation and chemo. He will start chemo again in a month for 6 months. He will also start wearing the Optune. We are hoping for a great outcome but enjoying each day not knowing what the future holds.

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.

I too have a spouse diagnosed October 23. Surgery, followed by three weeks of oral chemo and radiation. Then after a month off went to five days of oral chemo a month for six months. After two rounds of this, it was determined the chemo wasn’t really working anymore. He is 82 and does not have the chemo receptor. They have now switched him to an Avastin antibody infusion every 14 days to hopefully stem the growth and provide relief from his symptoms, fatigue, headaches and brain fog. Anyone have experience with this ? Also, curious if anyone is using a social worker from Mayo and what sort of help that person can provide.

Know what you mean…mine got diag with gr 4 gbm which was totally resected in July 2023. ( 3cm tumor in left parietal lobe)He’s had the rad., chem and now on monthly chem pills ( 5 days on, 23 days off)
So glad your husband is doing good… mine is too, he’s 71 and not as active but able to be more active now. His last two MRIs were clear…good luck to you…all we can do is hope and pray p, be optimistic and positive,and live the best we can, doing what makes our life happy 😃

My wife was diagnosed with grade 4 GBM in February 2023, the mass was in the left front lobe, which impacted her memory and recall capabilities.
She had surgery immediately which removed about 94% of the mass.
After two weeks she started seven weeks of daily radiation treatment and daily chemo pills.
She then had six chemo maintenance cycles, 5 chemo days followed by 23 days of no treatments.
MRIs were performed after the radiation treatment and after each chemo maintenance cycle. Each MRI showed to progression of the cancer.
The MRI cycle was increased to every two months, the next is 3/19/24, and so far no progression of the cancer has been detected.
We indeed live MRI to MRI we are living life to the maximum possible and are thankful for each day.
She has resumed YMCA exercise classes, reading hard-copy books, and putting together jigsaw puzzles in the last two months.
Good luck in your lives and may God shine on all of you.

Thank you for sharing…we golfed today and it went well except for the vision issues watching the ball after the drive. May god shine on all of you too😊

Thank you for the positive feedback 😊

Does notice trouble staying on task…focuses on a written calendar to help with schedule. But overall trying to enjoy what he can do. Next MRI is March 7th.

Good question, @una. Oncology social workers can offer many different services. It is an often overlooked service. You may find this blog post, written by the Mayo Clinc oncology social work team, helpful to learn more
- How an Oncology Social Worker Can Help https://connect.mayoclinic.org/blog/cancer-education-center/newsfeed-post/how-an-oncology-social-worker-can-help/

I also want to invite you and your husband to join the monthly support group hosted by a Mayo Clinic social worker if you haven't already. They are online on Zoom the first Tuesday of the month. The next one is on March 5. See more info and how to register here:
- Brain Tumor Support Group - Compass Connect https://connect.mayoclinic.org/event/brain-tumor-support-group-compass-connect-2/

How is your husband doing on Avastin?

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.