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Inoperable tumour. Optune Device?

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  • Inoperable tumour. Optune Device?

    I'm writing from Ireland. My 52 year old wife has just been diagnosed with an inoperable Glioblastoma MF Category 4 tumour. In terms of surgery, only a biopsy was possible, as we were told the tumour is too deep and in an area that is too likely to lead to disability if we try. We are still waiting for the full histology/genetic testing report to come back, but it has been confirmed as IDH-1 negative. Methylation status is pending. Everything about this is completely overwhelming. We are being offered the standard of care protocol, beginning in about two weeks, which is radiotherapy, chemotherapy and then follow up chemotherapy...etc. I've been doing my best to explore all options and trying to educate myself on a subject that I find confusing and incredibly complex. When I raised the subject of immunotherapy/clinical trials/ getting second opinions from American brain surgeons with our various doctors, they've said that it's our right to do so and understandable that we would want to, but that we're more or less wasting our time( not their words, but pretty much what they're saying to us.) It appears the only faint hope we have of any kind of extra therapy is the optune device. However, it does not appear that it is available in Ireland, I've seen quotes of prices in the UK running into 5 figures per month, which would be totally unaffordable anyway, given our modest income as Special Education Teachers, and I'm not even sure that it can be used on someone who hasn't had a resection or debulking surgery. I wonder if anyone can answer the last question regarding its use in patients with inoperable brain tumours please? If anyone had any further suggestions as to where we could turn, it would also be greatly appreciated.
    Kind Regards Seamus

  • #2
    Optune can be used on inoperable brain tumors, but it is very dependent on location. The lower and deeper in the brain it is the harder to get the correct field strength while keeping the electrodes in a comfortable place. There are times the tumor is too deep to even bother trying. I would look towards https://pipelinereview.com/index.php...-in-Japan.html Teserpaturev
    It may be impossible to get but the more demand there is the quicker we will get access. Only available in Japan now.

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    • #3
      Thank you very much for your helpful reply. I've contacted the company directly myself, but I've yet to get a response from them. My wife's tumour is in the left frontal lobe but part of it goes into the corpus callosum, so I'm not sure if that'll rule her out of using Optune, if it's even available to us here in Ireland. We are meeting the oncologist on Thursday. I'm very much hoping that he'll be able to offer us something more than the standard of care chemotherapy, but given our relative geographical isolation and lack of any clinical trials taking place here, I fear that this is all we'll be given. Again, thanks again for your reply. The brain tumour handbook was exceptionally helpful also.
      KInd Regards

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      • #4
        Let us know what they say. I doubt you could get it because they need to have a service person available to help you if there are problems and I doubt if they have people in your country but it is worth a try.

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        • #5
          Unfortunately, they told me Optune is currently not available in Ireland. Treatment is only possible in a country where Optune is available and patients have a residential address in such country (Germany, Switzerland, Austria, Sweden, Israel, Belgium, Italy, Poland, Czech Republic). We have been offered the standard of care chemotherapy with radiotherapy. When we mentioned the possibility of any supplementary treatments/ immunotherapy/vaccine therapy with the surgeon, radiotherapy oncologist or oncologist, we've been met with the same response, which is that nothing has been proven to be more effective than the standard of care and that there are no other options for us. It is very difficult to know where to turn now. My fear is that my wife will go through the standard treatment and by the time we find out it hasn't been too effective, it'll be too late to try anything else.

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          • #6
            You can always try the care oncology protocol. https://www.frontiersin.org/articles...019.00681/full it is a combination of old readily available frugs added to Temozolomide. They are reporting pretty good results. In our patient navigation program, it is the default suggestion when we can't get the patient into anything "more exciting".

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            • #7
              Thanks again for your reply. I must admit I'm confused by the whole concept, which is probably a reflection of my dazed and shocked state currently. I've contacted care oncology to ask how they operate. Hoping we have some relative success with the standard of care treatment, which begins in two days. Still awaiting full lab report. I suggested to oncologist that the TMZ might be ineffective if her tumour is not methylated, but he told me that that's not necessarily true. Just hoping we'll be in good hands. Thanks again for your help.
              Seamus

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              • #8
                MGMT methylation is not a perfect test. Some people who are unmethylated do well with temodar, it is just that the chances of doing well are better if it is methylated. Unless you have something better, it is still worth a try.
                I have a webinar scheduled for next month that will be about a new test that better predicts if Temodar is worth using. Watch the news blast for details. It isn't available yet but will be soon.

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