Glioblastoma (GBM) trials and therapeutic devices (Optune)

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?

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?

Thank you for the information. I am doing very well. My next option is Optune so that is why I am trying to gather information so I can make an informed decision.

I have to believe it helped him for 10 months when his tumor showed decreases. Unfortunately, nothing seems to keep on working indefinitely. It also is very expensive ($21,000/month) so the insurance companies fight about paying it. They gave us a hard time because Otie was getting Avastin treatments every other week while wearing optune. They want optune to be the only treatment. The good news is that Novocure will work with your financial situation to quote a price that will not go up regardless of what the insurance companies do. Our quote was $250 per month.

I was diagnosed with GBM in January 2023, had successful resection surgery, 6 weeks of proton beam radiation therapy and Temodar. Started second round of chemotherapy this month 5 days on/21 days off. I started Optune last week. I am also Mgmt positve for which I am so grateful. The Optune research data is promising and it takes some getting used to incorporating into my life style. I wish I had more to report but I am early in the process with high expectations. I started the keto diet as advised by my integrative oncologist but was having so much trouble with my appetite that we are focusing on that right now.

My wife is also considering the Optune device and will be talking with folks at the Mayo Clinic about the results from it next week.
I would like feedback from individuals who have used the Optune device about the results of the treatment.
Thanks.

Thank you for the information.

My wife was diagnosed with GBM in late February 2023 and will be starting the second round of chemo at the end of next week.
Did your insurance or Medicare cover the costs of the Optune device?

Novocure believes Medicare will pay but apparently they won’t approve until you begin treatment which is so weird! I’ll update when I have a definitive answer.

My husband is in the Trident clinical trial for Optune, so started it in December 2022 concurrent with starting chemo and radiation. He is MGMT negative and has had low platelets at times which stopped/delayed chemo several times, so we are very thankful for Optune as there were times when that was the only thing we could be doing.

He has figured out how to exercise and golf while wearing the device so that he could increase his usage percentage. His usage is 80-88% lately. We also found a refrigerated cool pack that fits under a cap to give some heat relief on warm days (we live in FL).
The main side effects have been itchiness and areas of skin irritation, some open sores. I move and trim the arrays when needed to give the sores time to heal. When we change arrays, we try to leave them off for several hours, put Cortizone cream on to relieve the itch, and let his scalp breathe. His Medicare & supplemental plan have paid for all of Optune thus far. The Novocure rep and 24 hour line are very helpful to answer questions and send supplies etc.
We have flown with it - other than having more to carry on and some longer security checks, it’s been fine for travel. He even had it on during flight so that he didn’t lose the hours.