Failed Temodar- Now Avastin/cpt 11

Hi Bob.

How do you know so much! You're amazing! You really taught me tons! It's great...

I spoke to the oncologist about insurance and the various coverage issues I read about. She said they haven't had problems at all and the companies cover the avastin/cpt 11. The "worst" that will be is that she'll write a few letters to the company explaining the need for the meds.

We have Medco, which my dad works for- so it should be fine.

Let me ask you, too, since you're very familiar with this site- is there any way to "privately" contact memebers? For instance, is there any place we can list our email or AIM screen name??

Thanks!

Revi

My mom's GBM is also in her left temporal lobe. She's 61 years-old.
The speech and memory "issues" are a result of the tumor, not the treatment. It seems that the treatment has had a positive effect on her speech and memory. What I don't know is if it's the treatment or if it's the steriod that she gets along with the avastin/CPT-11 that's having the positive effect on her symptoms. I just hadn't expected to see positive results so fast. The steroid is decodron. Again, the effects of the treatment seem to be positive in regards to her symptoms. As far as the sleeping, she's totally with it and very frustrated with being so tired. She sleeps on and off, reads, watches TV, she just feels very tired.
Keep me up on how your mom is doing.
Best,
Nancy

Hi Nancy,

I read your email and my Mother also has GBM. She was diagnosed and had surgery on 5/25/06 which was also her 62nd Birthday.

My entire family is devastated and we cannot figure out how someone that has been so healthy and never smoked or drank a day in her life could get something like this.

She finished her 6 week radiation/temodar approximately one month ago. She got through it with flying colors and then 1 week after her radiation was completed she had a seizure. Ever since then she has not felt quite as good and has been experiencing headaches. We went to Duke to consult with a doctor and he said her MRI showed her tumor was growing back and recommeded she start treatment as soon as possible. He recommeded Avastin-CPT-11 or Gleevec, which is a pill cocktail. We live in Oklahoma and decided it would be more practical to do the treatment closer to home.

We have an appointment tomorrow in Dallas with a neuro oncologist who does Avastin-CPT-11 and we are still trying to decide if the Avastin-CPT-11 is the right choice or if we should consider other options such as Gamma knife. We have heard a different opinion from her surgeon, her medical oncologist, etc. So we are very frustrated and don't know what is best.

Can you tell me how your mother is doing on the Avastin-CPT-11? Has she had any bad side effects? Can she do normal everyday things and get out and enjoy life?

Has the treatment been working well and shown improvements in shrinking her tumor?

My mom has a brand new grandbaby that was born two days ago and she wants to be able to help babysit and get out and do all the things she was doing before all of this happened. She is scared about trying new things and any information you can give me would be very appreciated.

I hope your mother is doing well.

Thank you!
Meredith