Optune

[blur-blurb]

Hi my sister is recently diagnosed with gpm. I have came across Optune (TTfields) - a device to treat and improve the survival. Just wondering does anyone in this community has experienced in Optune? Or, does anyone know how long should Optune be used for because I can't seem to find anything in internet searches. Many thanks! And, thank you so much for setting this community. There are so much information to process and so much uncertainty. I hope this community helps us to make better decisions as we navigate the information and uncertainty ahead. Thank you so much!

[Starcatcher1]

Hi, obviously I’m not sure where you are from (I think the answer to your question varies considerably depending on which country you live). I live in the UK and I no not have insurance (I think it would a pretty good policy to cover this anyway), but I did do a bit of research on it a year or so back and it was out of my league.

If I remember correctly (and that is an issue with me and my tumour!) it is predominantly available in USA and is around £20K per month, and by the time flights and hotels are included I had a ballpark figure of £250,000 a year.

This might give you a start.

imperialprivatehealthcare.c...

[blur-blurb in reply to Starcatcher1]

Hi, thank you so much for your reply, really appreciate it. You are very clear and provided very good information. Thank you so much!

We are in Singapore. You are right. The first I did was to check insurance coverage. Unfortunately, it is not covered. But, it is available in Singapore. So, there is no issues in terms of accessibility.

I think the consideration is how many months/years to wear Optune which will give us a sense of the costs and the practical benefits e..g how does it improve quality of life and whether there are anyone in this community to offer real life experiences.

[Zhaleh_TBTC Administrator]

Hello, thank you for your post. We do have some further information on this particular treatment on our website here: thebraintumourcharity.org/b... The Optune website also has information on how the treatment works: optune.com/how-optune-works

I hope this will help to answer some of your questions. We also have our Support and Information line, if you have further questions, or would just like to talk things through. You can give us a call on 0808 800 0004, Monday – Friday 9-5. Alternatively, you can email us on [e-mail]. Warmest wishes, The Support Team.

[blur-blurb in reply to Zhaleh_TBTC]

Hi Zhalen, thank you for the info, it's very useful.

[Meema61]

My husband 63 years old, was diagnosed with GBM the week of Christmas 2021. Inoperable, 3 tumors. Never sick, worked 12-15 hour days loading log trucks. By the time he was diagnosed and released from the hospital, he came home virtually with dementia. Not the same man who entered the hospital. Long story short, after fighting to get the Optune, he used it for 4 months. The company is terrific! He just did not have the ability to make the adjustment to have it as an appendage. Cognitively he couldn’t handle it. They want you to wear it at least 17 hours a day. I believe it is worth a try. I wish you well. ❤️

[blur-blurb in reply to Meema61]

hi thank you so much for giving your comments. My sis is on Optune since late July. We are trying desperately to get insurance coverage, We have reached out to Novocure. Unfortunately, they can’t help because my country is not in their list. My sis will continue only if there’s insurance, I’m so lost and frustrated with the insurance company

[Meema61]

I’m so sorry to hear that. I know how you feel. Our insurance wouldn’t cover it either and Novocure was still in the process of working on an Appeal when Bryce finally stopped using it. If he was old enough to receive Medicare it would have been covered. Ridiculous! I will pray it all works out for your sister. ❤️

[Buffalolove in reply to Meema61]

I’m sorry for all you’ve been through. May I ask why he stopped using the Optune? My husband was dx with a Grade 4 GBA and standard radiation and chemo and started optune over 4 weeks ago. They did an MRI and are in disagreement over tissue necrosis and edema from delayed effects of radiation vs suspicious tumor growth. He just finished another round of 5 day chemo. Appreciate any advice. Thank you