High grade glioma: waiting for remainder of molecular testing

This is good news for you!!!

I agree with the Optune option. I have been on it for 17 months. But, I also have taken the radiation and chemo pills. Last MRI showed no changes (meaning no new cancer growth).

My husband has been on the Optune treatment for 10 months. Although wearing the device has been a lifestyle change with pros and cons, so far so good. Last MRI showed no regrowth of a tumor. He has Glioblastoma grade 4, undergone surgery to remove tumor, radiation and is taking TMZ for a year. The Optune is reported to extend a persons survival but not a cure. Worth checking out.

I do want to try Optune treatment. Does insurance only cover it if standard of care (chemo and radiation) is not successful? Would I talk with my neuro-oncologist about this or my radiation oncologist. I'm meeting with him for the first time on Thursday.

I had surgery to remove what they could and get samples. Then did radiology. Local system was very upset that I wasn't doing temozolomide (TMZ) so I caved and did it.

Then went to Moffitt and Mayo and both said surgery and radiation tok care of it. But TMZ was just a bonus.

It was the worst part because it affects the whole body. So be careful and let them know of anything weird. For me, I was so tired, weak, couldn't go anywhere, and it got worse coming off the mess (lowest dosage in minimum 6 months).

So just be careful and report any odd feelings anywhere in your body.

Optune can be prescribed along with standard treatment. His radiologist prescribed Optune, but the Dr. must go through training and certification to prescribe. Medicare, if you have it, pays for it.

I read that with Optune, its more of a dealing with them directly on support, problems, and getting the disposable pieces.

You rent the Optune. I have never had a negative experience. The support team is very friendly and knowledgeable. Medicare picks up the entire cost, which I believe is $24,500 per month.

I've never had a problem with replenishing supplies. The phone or text line is available 24/7. Support staff that make occasional home visits has been helpful. Staff can not deal with any medical issues (such as scalp sores) as this should be reported to the Optune prescribing physician. Support staff do well with technical issues (such as why is the device beeping, or any damaged items).

just be aware that medicare is strict re; starting date of optune must be 6 or 7 weeks post standard radiation/chemo. Otherwise, they are unlikely to pay for it, we did not know that and did not start for almost 6 weeks because we had a family cruise planned. However , optune went through 6 or 7 appeals with medicare who ultimately denied it and we were told that we would not be responsible for it, with the reply of medicare after each appeal. As it turned out, it was not something that worked for my husband, so he stopped it after 2 months, its a big lifestyle change, and if you are claustrophobic like he is the idea of wearing something 18 hours although you are free to move around, still felt too confining for him.