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Caregiver to my 16 year old GBM survivor diagnosed on December 2018

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  • Caregiver to my 16 year old GBM survivor diagnosed on December 2018

    Hi Al and everyone,
    I am a caregiver to my 16 year old daughter who is a GBM survivor. We live in Tokyo, Japan. She is being treated in a hospital in Tokyo that is famous for treating many GBM patients. She was first diagnosed in December 2018 with a malignant brain tumor (size was approximately 2cm) in the frontal lobe, near the temporal lobe (located near the "surface" of the brain). She was admitted to the hospital after having a facial seizure on the left-hand side. At that time, we were told that it appeared to be Grade 2. She had a surgery in March 2019, and the surgery was successful with 95% or more resection. The pathology report (which we received verbally) stated that the tumor was Grade 4, GBM, negative for IDH1/2 (positive for IDH wildtype), negative for 1q/19q deletion. Thereafter, from April to May 2019, she went through standard radiation therapy (60 Gy) + Temodar treatment. In addition to that, she also had 6 weeks of autologous formalin-fixed tumor vaccine (immunotherapy), which is so-called "non-standard" treatment. This vaccine was made from my daughter's tumor that was resected from the surgery. She is currently on the 5 day Temodar treatment every month, and this is planned to be continued for 12 cycles (1 year). Fortunately, my daughter has had "clear" MRI scans until now. Luckily, she is currently able to go to high school and enjoys her teenage life.
    I have registered to this forum because I feel like we have limited choices and treatments for GBM in Japan, and we have limited information available in Japan. I have seen a lot of challenges and obstacles with the medical system here. Also, I have tried to get my daughter's tumor tested for genomic testing but I have not been able to because my daughter's current condition does not meet the criteria for eligibility to get tested through the national insurance. This is the same situation with the MGMT methylation status; we have not been able to find that out. Because of the limitations I have here in Japan, I have checked quite a few websites and forums for GBM patients overseas. While doing so, I have realized people are very hopeful, positive, and proactive about overcoming GBM. I know GBM is a challenging illness/disease but I am going to do everything that I can for my daughter. And in doing that, I thought it would be good to connect with other GBM patients and families. I will be posting a question separately but wanted to introduce myself so I can meet new people here. By the way, I used to live in the US for 10 years so US is my second home to me

  • #2
    Hi.
    Welcome to the group! The vaccine sounds great, Did you see the thread about the Japanese viral therapy? May be worth talking to that group and get things set up in case of a recurrence.
    Would they let you pay to have the testing done? May be worth it as if she is mgmt unmethylated I would probably stop the temodar. I would also test for h3k27m mutation. It is most common in her age group and might open other treatment options.. I would probably not change anything while things are going well but it is good to be prepared if there is a recurrence.

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