17 months

Jon, thank you for all that information.  My husband goes back to see the oncologist in 2 weeks and I am going to ask him about the MRS and Perfusion Scan and if we have the option to do one of the two.  I agree with your NO that with more data, a better opinion can be made.  If the MRS is not reliable than at least the Perfusion Scan sounds like a a worthwhile test.  Is you wife off temodar now? There have been discussions on this board about continuing temodar past the 12 months. Hoping that 12 months will hold off any recurrence for a long time.

Congrats on the 17th month mark. Im at 13.5 months with 1 regrowth.  I had an MRS a month ago.  IT came back as inconclusive.  The are supposed to give a graph, and image,and give off a sound.  WHen they combine the three, it is supposed to tell what a spot on the brain is.  My insurance is also not wanting to pay for it.  just got a $1200 bill for the scan

josh

Hux and Josh, sorry to hear about your insurance issues.  We are obviously lucky to have good insurance since I've never heard a peep out of them for anything the NO has ordered.

mollie924, yes my wife has been off Temodar since June after 12 months of the 5/23 cycle.  Neither her primary nor secondary NO would authorize it for longer than that (just a personal choice of her NO).  I was more than hesitant for her to stop, but at about 11 months she was ready to stop on her own and so the timing worked out well.  As the NO told me, we don't know if the Temodar is keeping the cancer at bay or if the cancer is in remission and there's only one way to find out, stop taking the Temodar.  This is why I get second opinions on major issues.  In this case, both NO's said the exact same thing and so we followed their recommendations.

Jon, thank you for your reply.  Its good to know that both NOs saw no need to continue the temodar.  It hasn't come up with my husband's NO but if it does than I think a second opinion would be the next step. We are 20 months with a stable MRI-feel very blessed also.

Josh,

Talk to your Dr. He can call the insurance company and they may end up covering. That’s what happened in my case. It took about 6 months but eventually after repeated phone and written appeals the agreed.

With insurance companies it’s all about persistent calls and written appeals. It is annoying buts that how the bureaucracy works.

I am convinced that if I make enough phone calls, threaten lawsuits and fill out enough forms I could have them cover my pets vet visits. There no real logical reasoning to how the machinery operates at these large insurance companies it’s just about jumping though enough hoops and following procedures.

Hux...

I noticed the comments on here about continuing Temodar past 12 months.  My husband started it during his radiation treatments and has continued it for almost 2 years now.  He has never had a recurrence.  We do not forsee stopping anytime soon either.

I will be 3 years yesterday since I was diagosed. You are blessed.  xxx Ellen

thats awsome jon!!! i pray for many more years and for yall to grow old together.... :)