Title : Young adult / Adolescent GBM: Seeking advice
link : Young adult / Adolescent GBM: Seeking advice
Young adult / Adolescent GBM: Seeking advice
Dear Stephen and all,My 15 year old has been diagnosed with GBM in March 2019. We live in Tokyo, Japan and she is being treated by the hospital famous for treating most of the GBM patients in Japan. I would like to get some advice and insight regarding my daughter's GBM, treatment option, etc. Here is some background information about my daughter:
Initial diagnosis: She was admitted to the hospital after having a facial seizure on the left-hand side. She had a CT and MRI scan, which showed a brain tumor.
Location of the GBM: Right Frontal Lobe, near the Temporal Lobe (near the "surface" of the brain). Size was 2cm.
Result of the Pathology Report (Only received information verbally. Seems to be normal in Japan):
Primary GBM
Negative for IDH 1 / IDH 2
Negative for 1q / 19q deletion
MDMT Methylation: Unknown at this time (although the Neurosurgeon told us that we can get this tested if necessary)
Rx Drug: Keppra 500mg twice a day
My daughter had surgery in March, and she had complete resection. Neurosurgeon told us that 95% or more was resected and everything seen by "eye" was taken out. As of now, she has been recovering without any problems with paralysis or seizures.
Currently she is going to school everyday and getting the Radiation / Temodal (100mg) treatment on an outpatient basis. Thereafter, we have been told that she will be on the 12 cycle Temodal treatment. In addition to this, she is also getting the autologous formalin-fixed tumor vaccine (immunotherapy) for 6 weeks. This is a personally made vaccine using my daughter's tumor that was resected from the surgery. This is not a standard treatment in Japan and the neurosurgeon has told us that there is no guarantee that this will "cure" my daughter but there has been studies done where there has been a prolonged PFS time for some GBM patients who received this treatment. Although this is an expensive treatment, we took a chance because we wanted to try everything we can for our daughter.
Having said that, I would like to get some advice regarding my daughter's GBM:
1) The neurosurgeon team at the current hospital and the former hospital where she was at both told us that my daughter had a lower grade brain tumor (most likely Grade 2, maybe 1 and very unlikely that it would be 3). We were shocked that the actual pathology report came out as Grade 4 / GBM. In addition, the tumor size did not change much from the time of the initial diagnosis in December and when she had surgery in March. Has anyone had experience with this kind of a turnout?
2) Having read many research or studies on GBM, I have been told that being young and being a female seems to have a better prognosis but are there any young adults or adolescents with GBM who can relate to this? GBM seems to be rare in young people so I don't see a lot of researches or studies in this area.
3) Has anyone heard or experienced the autologous formalin-fixed tumor vaccine? I'm wondering if this is just available in Japan. In addition to this, I am thinking of having my daughter participate in the Peptide vaccine clinical trial that is being done at a university hospital here. This is if my daughter meets their criteria and the HLA status, but has anyone had the Peptide vaccine treatment? If so, do you have any feedback?
4) I am thinking of putting her on the cocktail regimen but I haven't found any recipe for adolescents. I'm also not sure if our neurosurgeon will be supportive in my daughter taking supplements. Is there any advice on the supplements that she might be able take at her age? If I want her to take a minimal amount, what supplements should we prioritize?
5) If there are any young adult / adolescent GBM survivors, have you had any difficulties from the side effects of radiation therapy? Our radiation oncologist told us that she will most likely suffer from brain function deterioration and memory issues, which I have been freaked out about. She is a HS student and she would like to go to college. I would like to hear of any experiences from long-term survivors and any advices if possible.
6) After getting the surgery, my daughter seems to be more emotional and seems to get angry easily. She has a hard time controlling her anger. She is a teenager and an adolescent so that may add to this, but she is more short tempered than she was before the surgery. Has anyone had any experience with this kind of issue? If so, is this something that we need to live with, or does it get better?
I have accepted the reality and the GBM survival rate data, but I have lots of hope for my daughter. I would like to do everything possible for her to live a happy life. Any kind of help would be appreciated.
Thank you for your help.
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