New Treatment For Regrowth And Ucla

I have three questions.

1. Anyone out there getting treatment at UCLA?

2. Today my MRI came back showing a new growth on other side of brain.It is very small and my onc. said that this was good because it will give me opportunity to try several new options before going to Avastin-C...I'm a little afraid to try any of these other things because of their side effects. I'm feeling so well right now that I don't want to be really sick. I know that sounds rediculous, but I'm trying to figure out what option to choose. Has anyone tried Tarceva and Sirolimus? This is a Clinical Trial or Bay 43-9006 and CCI-779? Also a Clinical Trial

3. I've heard great things about Avastin/Cp11. But the possible bleeding of the brain worries me and the other side effects. I'm a wimp! Anyone recommend it anyway?

Sorry....I guess it's CPT-11

My onc. thought it might be too soon to start Avastin/CPT-11 because of how small the regrowth is. She thought I should try some other options and use it as a third option.

Thanks for your input,

Denise

Don't be afraid to try treatments options.  As I always state, the side effects of the brain tumor itself are far more deadly than the chemo or radiation will be.  In order to beat this disease you must stay aggressive.  The tumor will be.  Don't give it the chance ti get the upper hand.  Playing catch up with brain tumors is hard.

Thank you Lorre,

I have completed radiation and temodar. I was to start a new cycle of temodar next week, but my onc said it wasn't continuiing to work so she wants to have me try some of the other treatment options I mentioned. Have you heard of any of them?

Why not the Avastin combo? I'm no onc but why wait for further regrowth before trying it. It's even easy for wimps! (lol) Very few side effects for me and for most I've read posting. After 5+ months on Avastin and CPT11 I feel as good as I did post surgery, which was great. Of course there's some fatigue, etc. but I'm much stronger than I was post radiation/temodar. Good luck, Denise. You can beat this beast.

Thank you for your info. I'm no onc either, but apparently the Avastin combo is used with larger tumors that have lots of blood vessels. She said mine is so small that I should try these other options first. I really like her but believe it is a way to test these other medical trials???

Glad to hear you feel so good on the Avastin.    When reading everyone elses post about it, I thought if I ever have a new growth, I would definately do it, but now I don't know because of the brain bleeding.

Denise,  Not sure about other trials or chemo options (that needs to be discussed with your doc & risks/benefits weighed).  Have you inquired if you are a candidate for radiosurgery (aka Gamma Knife or Cyberknife)?  With my mom, she had 2 new small regrowths and radiosurgery was the best option in her case.  Just though I'd throw that out there.  :0)

Nikki

Mom Dx 10/07 plum-size GBM Lt. parietal; 6wks rad/Temodar 2/08, 4/08 Temodar; 5/08 Gamma Knife; 6/08 Temodar; MRI 70/08

Why 'wait ' for regrowth or any other changes? I agree with Lorre G. you can't let the tumor get a head start. My hs had a very small (1cm)GBM tumor with about 3cm adema deep in the left temporial lobe. He had partial resection/radiation/ temadar and Avastin as soon as the surgery healed. His MRI's have been stable and he has tolerated all treatments very well. This has been a very good course of treatment so far.

I know you said you like your oncologist,but would you concider a 2nd opinion?

My husband is being treated at UCLA, and so far, we are lucky with really good results, having stable scans showing no visible sign of the tumor since resection in Oct '06.  We are trying for 24 cycles of Temedor, dosage was lowered to 300 mg so he could recover more quickly and keep to the 23/5 schedule.  After that, we are then probably in the same boat, weighing our options.  Some of the options included a vaccine, or going to Avastin, but that can't happen until there is a recurrence.

UCLA does have a lot of options as they have a lot of clinical trials, being a major brain cancer center.  My husband is currently being treated by Dr. Cloussey, but mostly sees Dr. Nghiemphu.  I would ask them to review all of the options (and see of you can get Dr. Cloussey looped in with this part of the consult) the pros and cons, including risks, and see which makes the most sense for you. 

People tell you about the gamma knife, but what my husband had at the end of the radiation STS radiation surgery, which was broken into 10 treatments.  It was also called a radiation "boost" at the end of the radiation treatment.  They tend to steer away from the gamma knife and lean toward conventional surgery, which we agreed with.  In the case of my husband, and the sensitivity of tumor location, there would have been some collateral damage that we had to avoid.

Good luck and take a look at their site for more information on the clinical trials that are available, including a description of eligibility.

 God Bless,

Gayle C, wife of John C, GBM warrior since Sept 06

 

Just to clarify,  radiosurgery (trade names Gamma Knife, Cyberknife) is different than the radio "boosts" that are used at the end of standard radiation therapy.  Each utilize a different set of radiowaves to get the job done. Again, one's individual MD would evaluate one's case in what are the best options.  Surgery was not an option for my mom - that would have paralyzed her whereas radiosurgery could get in there and do the least damage to the surrounding healthy cells.  :0)  Nikki