1. < Brain Tumor

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

Posted by nancyhafer @nancyhafer, Feb 23 8:26am

My partner Bill was diagnosed with a glioblastoma on 9/11/23 after experiencing sudden cognitive issues headache for about 12 hours.No seizures.A trip to the ER found a tumor 3.2 cm and was located on the right occipital. He was put on steroids and anti seizure meds to reduce swelling while awaiting surgery. The steroid reduced the swelling and symptoms.The tumor was affecting his vision and still does so no driving. A craniotomy was done in October. He recovered well. Visited gym 4 times a week, a little golf and easy hikes. Still was having vision and cognitive issues. Chemo and radiation 3 weeks. Did well. No signs of spreading. Started oral chemo January 5/5 days each month for 6 months. Increased dosage since he handled initial dosage well. Takes anti nausea meds with. Still visiting gym, golfing and easy hikes. Having first MRI in March to check on growth. Fingers crossed🤞🏻. Just trying to enjoy each day we have. Biggest issue for us is the not knowing when things will change.

Interested in more discussions like this? Go to the Brain Tumor Support Group.

msdds1 | @msddsq | Mar 30 7:01am

My husband was diagnosed in April 23. He had two seizures and on the second we got an MR and it was diagnosed. He had the usual protocol with Surgery of the Temporal lobe. His surgery was successful with very little damage to cognition or physical. He was a healthy person to start. He is on seizure meds and some off-lable medicines that on low dose my have anti Glio effects. He did have a set-back with his last dose of Temazolamide and it has never been the same. He had cluster seizure episode Christmas Eve and ended up in the ER all night. He is 90% himself. I think it maybe more the seizure meds than anything else. He had on and off nausea and some issues with what he calls a Wawa sound in his head when he gets up too quickly. He is still sharp and reads and takes walks. He has a tremor in his left hand and arm. He goes for his next MR soon. The last few have been good. He is 71 and was an active cyclist and businessman. We got a new Oncologist and a new Epileptologist and they are both great and we feel better now that we made that change. Some of the meds were changed for the seizures. It is hard living day to day, it is a challenge to live in the now. I am thinking of you all and wishing you the best. Thank you for sharing.

REPLY
positibilitarian1 | @positibilitarian1 | Mar 29 10:20pm
In reply to @onewyldbeemer "Hello all! I have not been on this site since September. Hope everyone is doing well...." + (show)
@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.

Jump to this post

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!

REPLY
kylebar | @kylebar | Mar 16 6:38am
In reply to @okjanetp "Both of you have the right attitude: enjoy each day and focus on the present! Try..." + (show)
@okjanetp

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.

Jump to this post

How is your husband doing now? I see he was diagnosed about 18 months ago. It is great to see some GBM patients on here doing well after many months. My husband wasn’t so fortunate. He lasted three months. I keep hoping a “cure” will be found so others don’t have to experience what we did. I wish you my best and I hope he keeps doing well.

REPLY
beth1952 | @beth1952 | Mar 15 12:32pm
In reply to @colleenyoung "Welcome, @beth1952. Did your husband start treatment since you last posted? What type of radiation and..." + (show)
@colleenyoung

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?

Jump to this post

Thanks Colleen ! My husband started this week with radiation along with the chemo pill , Temodar. He is doing fine so far. He has a good attitude and that helps me deal with it . Doing a LOT of praying !

REPLY
Moderator
Colleen Young, Connect Director | @colleenyoung | Mar 15 11:30am
In reply to @beth1952 "I am so glad I found this forum ! My husband had a mass removed a..." + (show)
@beth1952

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 !

Jump to this post

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?

REPLY
1 reply
Moderator
Colleen Young, Connect Director | @colleenyoung | Mar 15 11:28am
In reply to @onewyldbeemer "Hello all! I have not been on this site since September. Hope everyone is doing well...." + (show)
@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.

Jump to this post

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?

REPLY
nancyhafer | @nancyhafer | Mar 7 11:05pm

Today we had the 2nd MRI…thankfully no progression. Ready for 3rd round of 5 days of oral chemo…after returning from a much needed vacation to Cancun Sunday 😊Thanks all for listening and words of encouragement

REPLY
nancyhafer | @nancyhafer | Mar 7 11:00pm
In reply to @freebird36 "You are very brave. My heart goes out to you. Thank you for sharing your story....." + (show)
@freebird36

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!

Jump to this post

Thank you😊

REPLY
beth1952 | @beth1952 | Mar 7 10:30pm

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 !

REPLY
1 reply
freebird36 | @freebird36 | Mar 7 10:22pm

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!

REPLY
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