← Return to Offering hope: Dad's journey with Glioblastoma stage 4

Discussion

Offering hope: Dad's journey with Glioblastoma stage 4

Brain Tumor | Last Active: 15 hours ago | Replies (31)

Comment receiving replies
@adraddy

I just got on this website and I'm glad to hear what people are saying. My husband was diagnosed with a GBM IDH wildtype on March 12th. He was riding his bike and afterward collapsed. He's 66 and in great shape. Brain surgery on his left frontal lobe, on March 21st removed 60%. It was too close to his speech and memory to take out more. Tomorrow he finishes the 6+ weeks of radiation. He had to stop the chemo pill 2 weeks ago because platelets were so low. In late July he'll begin the 6-month regime - 5 days of chemo pill, 23 days off. We live in Baltimore and he's at Johns Hopkins.

I'm having this debate with myself about learning the doctor's prognosis so I can have some kind of framework moving forward as far as time. On the other hand, I realize no one really knows. I'm not quite sure what to do about it yet. Step by step we go.

Jump to this post


Replies to "I just got on this website and I'm glad to hear what people are saying. My..."

If I were you, I would try to find some kind of Clinical Trial as well. It sounds as if he is still in a early status and could qualify for "Newly Diagnosed"
I would imagine the tested his tumor for any mutations (CARIS report) and that would indicate if he is methylated or unmethylated.

TMZ works best with Methylated status. He may also be IDH1 or IDH2 and that would also give him a better prognosis. There is a new drug out for the IDH1 or IDH 2 status.
Check with your doctor to see that this testing was done on the tumor.

Check out the organization listed below, they offer a lot of videos and information for Glioblastoma and they have a wonderful book (that hopefully is still free) This book lists all type of information that is helpful to a new brain tumor patient.

The Musella Foundation is a non-profit organization dedicated to:
Empowering brain tumor patients and their families by providing emotional and financial support, educational resources, and advocacy.
Raising funds for brain tumor research to advance effective treatments.
Some key aspects of Al Musella and the Musella Foundation's work with brain tumors include:
Early Pioneers in Online Support: Al Musella was instrumental in establishing one of the first online support groups for brain tumor patients and their families, leading to the creation of the Musella Foundation and the virtualtrials.com website.
Advocacy for Patients: The Musella Foundation actively advocates for better access to promising treatments for brain tumors, as seen in their efforts to advocate for the approval of Avastin.
Clinical Trial Information: The Foundation provides information about clinical trials and other treatment options for brain tumors, and their work contributed to the development of the clinicaltrials.gov website.
Resource for Patients: They offer resources such as "The Brain Tumor Guide for the Newly Diagnosed" to help individuals navigate a brain tumor diagnosis.
Research Support: The foundation funds brain tumor research and collaborates with organizations like Cancer Commons on research initiatives.
Focus on Glioblastoma: Al Musella, in particular, has written about approaches to treating glioblastoma, a highly aggressive type of brain tumor.
In summary, Al Musella and the Musella Foundation are dedicated to improving the lives of individuals affected by brain tumors through various forms of support, education, advocacy, and research.

Hope this is helpful to you and to others. All the best to everyone, It is very stressful trying to find as many answers as possible and give your loved one as many months/years as possible:)

Glad to hear you are positive, if ok with you, id like to pass on a couple things, fst, never give up, prayer chain and lastly the brain has a great way of following your lead. Lastly. Keep your strength up even when you don't want to.