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Grade 4 GBM: Diagnosed in December 2018

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  • Grade 4 GBM: Diagnosed in December 2018

    Hi Al and everyone. My name is Tiara, and I am a caregiver to my 16 year old daughter who was newly diagnosed with GBM in March 2019 (she was initially diagnosed in December 2018). I have a question regarding the 5-day monthly Temodar treatment that she is receiving right now. She is currently doing her 9th cycle of Temodar. The hospital that my daughter goes to follows a protocol where GBM patients continue 12 cycles of Temodar. However, not only in that hospital but there are quite a few GBM patients in Japan who have continued Temodar beyond the 12 cycle. I have heard quite a few people continuing for 24 cycles (2 years) and some people for years. It seems that these patients are actually scared to be "off" of Temodar because of the fear of recurrence (which I completely understand). I have heard though that in the overseas, such as US, because the standard protocol is usually 6 cycles, it is rare that the Temodar treatment is continued on beyond 6 cycles. Is that really the case?
    By the way, I believe that not all Japanese GBM patients receive the MGMT methylation status or result from their doctors and a lot of people are probably continuing to take Temodar without knowing whether they are MGMT methylated or unmethylated. My daughter has not been tested for that either, but I am trying to investigate if we can find that out (I have heard that there is a way to get that tested in Japan).
    So here is my question: Is knowing the MGMT methylation status be a good factor in deciding to continue Temodar? Is there any benefit in continuing the Temodar beyond 12 months? As my daughter has had clear MRIs so far and she had taken immunotherapy vaccines (which is non-standard treatment), and with her low WBC level while continuing Temodar, I was opting to stop at 12 cycles. But I am also worried about the risk of recurrence in stopping Temodar. Any kind of insight would be appreciated. Thank you so much.

  • #2
    So glad to hear she is doing well.
    Nobody really knows the best length of time to stay on Temodar. There have been a few studies but they are poorly designed. I was at a conference where they discussed this and polled the audience. The audience was all neuro-oncologists. They were split about evenly with 6,12,24 months or as long as it was helping. You can argue for any of these choices.
    Low blood counts may be a good reason to take a break and monitor her closely. Do you have Optune in Japan?


    • #3
      I asked a few of my friends in the neuro-oncology community what their thoughts are on this. He said

      "There are articles than say 6 months and articles that say longer than that--12 or even more months We do it based on the age of the patient and the side-effects if any of the Temodar Also we pay no attention to MGMT status which is irrelevant at a single patient bedside--except MAYBE in patients over 65 We use it for clinical trial entry criteria"


      • #4
        Hi Al, thank you so much for your response. Your response is very helpful in determining our decision about continuing Temodar. We actually do have Optune is Japan and this is covered by national health insurance, but only for newly diagnosed patients (not for patients with recurrence). However, my daughter's doctor actually didn't provide us with this option, probably because of my daughter's age (she was 15 years old when determining the initial treatment plan). But even with this option available, my daughter probably would not have agreed to do it because of the QOL (as she is a teenager, girl who is physically conscious about her appearance...) and because of our culture here in Japan. In regards to the G47Δ oncolyctic therapy (viral therapy by Dr. Todo at University of Tokyo), we are still waiting for the treatment to be approved by the Japanese govt. We cannot even sign up for any clinical trials at this time. A lot of GBM patients in Japan are awaiting for this treatment to be approved and available, but I have heard that there issues with the manufacturer. I also heard that there are politics around the approval of this treatment, but I don't know the details of it. I have talked to my daughter's doctor as well, but he thought it would probably be approved within this year. Once it is available though, I would like my daughter to get this treatment.

        Going back to Temodar, I have a question about what you mentioned: "Also we pay no attention to MGMT status which is irrelevant at a single patient bedside." Does this mean that MGMT status is not considered when determining to continue Temodar? I just wanted to make sure that I understand this correctly.

        Also, have you heard if the effectiveness of Temodar "weans out" it is continued for years?


        • #5
          "we pay no attention to MGMT status which is irrelevant at a single patient bedside" I discussed it with him, (that was from Dr Henry Friedman from Duke).. he said the MGMT status is useful to group patients to see how effective other treatments are but by itself for an individual patient should not make any difference. There is less chance of it helping, but the chance is still there and worth taking.