Glioblastoma (GBM) trials and therapeutic devices (Optune)

Posted by marcyprof @marcyprof, Feb 11, 2019

Allo, I’m looking for a page on GBM trials. I’m particulary interest in the Optune-Novocure TTFields device which is really hard to benefit in Quebec Canada. I just find another similar physical device called Nativis Voyager. Do you have scientific information about this new Nativis Voyager technology?

Interested in more discussions like this? Go to the Brain Tumor group.

Hi Marcy, I found this about the Nativis Voyager
– An early feasibility study of the Nativis Voyager® device in patients with recurrent glioblastoma: first cohort in US https://www.futuremedicine.com/doi/full/10.2217/cns-2018-0013

If you are in Quebec, Canada, then this publication from CADTH (Canadian Agency for Drugs and Technologies in Health)
– Alternating Electric Fields (“TumourTreating Fields”) for the Treatment of Glioblastoma (English) https://www.cadth.ca/dv/ieht/alternating-electric-fields-tumour-treating-fields-treatment-glioblastoma
– Les champs électriques alternatifs (« champs de traitement de la tumeur ») pour le traitement du glioblastome https://www.cadth.ca/fr/vd/ieht-fr/alternating-electric-fields-tumour-treating-fields-treatment-glioblastoma

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@colleenyoung

Hi Marcy, I found this about the Nativis Voyager
– An early feasibility study of the Nativis Voyager® device in patients with recurrent glioblastoma: first cohort in US https://www.futuremedicine.com/doi/full/10.2217/cns-2018-0013

If you are in Quebec, Canada, then this publication from CADTH (Canadian Agency for Drugs and Technologies in Health)
– Alternating Electric Fields (“TumourTreating Fields”) for the Treatment of Glioblastoma (English) https://www.cadth.ca/dv/ieht/alternating-electric-fields-tumour-treating-fields-treatment-glioblastoma
– Les champs électriques alternatifs (« champs de traitement de la tumeur ») pour le traitement du glioblastome https://www.cadth.ca/fr/vd/ieht-fr/alternating-electric-fields-tumour-treating-fields-treatment-glioblastoma

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Allo Colleen, thank you for your help. It's really appreciated.
The Optune option seems serious to stop the growth of the recurrent GBM. Good news! But at 21 000$ per month for canadien, ouch (!), it is really expensive. That's the reason why I search for another device, maybe Nativis, but the science of Nativis is really different. Optune stop the mitosis. Nativis seems to reactivate the immune system but there's no clinical proof of that Nativis concept.
If you find any other good science information regarding Nativis, please let me know.

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I chose quality vs quantity of life so I am not taking tramadol or using Optune. I have been doing great:)
On Chinese herbs and vitamins and get therapeutic dose of vitamin C IV every couple of weeks. Last MRI July 19th and tumor threatens to grow back but has not:)

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I wanted to catch up those of you in this discussion on glioblastoma trials and devices and see how things are going recently.

@bjh369 – how have things been going? When do you have to undergo another MRI?

@marcyprof – did you end up trying out the Nativis device you mentioned in this discussion?

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Lisa Lucier@lisalucier, no, I don't have the opportunity to try physical devices (like Nativis) against GBM. I have had 14 intra-arterial chemotherapy treatments and I am currently under observation. I have been on the ketogenic diet since the start (fall 2018) and I take a lot of supplements (advised by my naturopath, Ben Williams and Jane Mc Lelland). I'm pretty good. The Radical Remission book also helped me see my GBM differently. I am hopeful of being able to heal! (To say that a year ago, I was convinced that I would not go through the year – I have come a long way since).
Good luck to all. Remember, it's not over until it's over (as long as there is life, there is hope).

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Hi folks, I was wondering if some of you or your loved ones have had experience with the Optune device in treating Glioblastoma and could offer your thoughts on what that experience has been like?
For instance, were you on other treatments PRIOR to starting Optune?
AFTER starting Optume, what are your experiences with quality of life, side effects, timing of starting Optune post radiation/surgery/etc., recurrence risks, etc.? Thank you!

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@daughterfuturemd

Hi folks, I was wondering if some of you or your loved ones have had experience with the Optune device in treating Glioblastoma and could offer your thoughts on what that experience has been like?
For instance, were you on other treatments PRIOR to starting Optune?
AFTER starting Optume, what are your experiences with quality of life, side effects, timing of starting Optune post radiation/surgery/etc., recurrence risks, etc.? Thank you!

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@daughterfuturemd, great questions. I moved your message to this existing discussion about the Optune device. In addition to @marcyprof, I'd like to bring @debraannk and @nursnis into this discussion to help you find answers to your questions about Optune.

You may also be interested in this discussion.
– Recurrent GBM and treatment options? https://connect.mayoclinic.org/discussion/recurrent-gbm-treatment-options/

Is your father a candidate for the Optune device? Can you remind me what treatments he has had?

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@colleenyoung

@daughterfuturemd, great questions. I moved your message to this existing discussion about the Optune device. In addition to @marcyprof, I'd like to bring @debraannk and @nursnis into this discussion to help you find answers to your questions about Optune.

You may also be interested in this discussion.
– Recurrent GBM and treatment options? https://connect.mayoclinic.org/discussion/recurrent-gbm-treatment-options/

Is your father a candidate for the Optune device? Can you remind me what treatments he has had?

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Thanks for redirecting my post to the right thread @colleenyoung 🙂 I think so?? He has had surgery and is undergoing radiation at the moment WITHOUT Temodar given the risk of immunosuppression and COVID-19. The plan post radiation was briefly mentioned to us and consisted of possibly pursuing Optune once the follow-up MRI has been done 4-6 weeks post completion of radiation.

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Who is using this device and what are the pros and cons?

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@suez5

Who is using this device and what are the pros and cons?

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Otis used this device for about 10 months while he was getting every other week infusions of Avastin. His MRI's showed tumor decrease during this time until the 10th month when it showed an increase. If you look through all my posts for Otis, I had given a summary of the Optune Cap and even posted pictures. They are still on the site.

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@suez5

Who is using this device and what are the pros and cons?

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Thank you so much for the information. I am new to the site and considering Optune. Do you and your husband feel like using Optune was beneficial to his health?

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@suez5

Thank you so much for the information. I am new to the site and considering Optune. Do you and your husband feel like using Optune was beneficial to his health?

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Good morning, Sue. I encourage you to read @otis123's story here:
– My Husband's journey with Glioblastoma https://connect.mayoclinic.org/discussion/my-husbands-journey-with-glioblastoma/

Also see this discussion with @marcyprof @bjh369 and @daughterfuturemd
– Glioblastoma (GBM) trials and therapeutic devices (Optune): https://connect.mayoclinic.org/discussion/gbm-trials-ttfields-brain-device/

I just read in your profile bio that this is a very new diagnosis for you and that you just completed proton radiation therapy and chemotherapy. How are you doing today?

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