dutchhook

Our story might be helpful to you.

My wife had one brain tumor. We had it gamma knifed (It had to be done before starting the Zelboraf trial). She's been on Zelboraf for 4 months now. The skin tumors and lung tumors down at least 90%. She was feeling 100% better.

Here's where it gets sketchy. 3 months into it, 4 more spots showed up on her brain scan. The doctor in Chicago said the spots were only bleeding from the tumors. Her thinking was why would the drug be working in 90% of the body, but the cancer growing aggressively in the brain? The doctor in Minneapolis said that the Zelboraf can't cross the blood brain barrier. The doc in Chicago said Zelboraf has excellent results on brain cancer.

So, we waited 3 weeks, then got more scans last week. the 4 spots were much bigger and there were numerous new cancer spots lighting up so the Zelboraf seems like it didn't work. She has also seen a great increase in bone cancer too.

She's now getting whole brain radiation, and things could be better.

I hope this helps a little. It seems there is honest disagreements on the effectiveness of zelboraf for brain cancer. By the way, she had no side effects from the zelboraf except for sun sensitivity. It was a miracle.

Our story might be helpful to you.

My wife had one brain tumor. We had it gamma knifed (It had to be done before starting the Zelboraf trial). She's been on Zelboraf for 4 months now. The skin tumors and lung tumors down at least 90%. She was feeling 100% better.

Here's where it gets sketchy. 3 months into it, 4 more spots showed up on her brain scan. The doctor in Chicago said the spots were only bleeding from the tumors. Her thinking was why would the drug be working in 90% of the body, but the cancer growing aggressively in the brain? The doctor in Minneapolis said that the Zelboraf can't cross the blood brain barrier. The doc in Chicago said Zelboraf has excellent results on brain cancer.

So, we waited 3 weeks, then got more scans last week. the 4 spots were much bigger and there were numerous new cancer spots lighting up so the Zelboraf seems like it didn't work. She has also seen a great increase in bone cancer too.

She's now getting whole brain radiation, and things could be better.

I hope this helps a little. It seems there is honest disagreements on the effectiveness of zelboraf for brain cancer. By the way, she had no side effects from the zelboraf except for sun sensitivity. It was a miracle.

So far, so good, just started 3rd month of treatment and really NO side effects except for sun sensitivity and some spots that had to be frozen off,

So far, so good, just started 3rd month of treatment and really NO side effects except for sun sensitivity and some spots that had to be frozen off,

So far, so good, just started 3rd month of treatment and really NO side effects except for sun sensitivity and some spots that had to be frozen off,

So far, so good, just started 3rd month of treatment and really NO side effects except for sun sensitivity and some spots that had to be frozen off,

Thanks Tim for posting. We are on the compassionate use study and were immediately concerned about my wife's treatment. Sounds like we'll be ok if our insurance picks it up. We did agree to be contacted by reporters on the drug as was requested last week on the MRF site.

We already got one phone call from a reporter today I guess. We're very thankful of the people who developed the drug and the doctors who got us into the study because without them, my wife might not be here today!

Steve & Teri

Thanks Tim for posting. We are on the compassionate use study and were immediately concerned about my wife's treatment. Sounds like we'll be ok if our insurance picks it up. We did agree to be contacted by reporters on the drug as was requested last week on the MRF site.

We already got one phone call from a reporter today I guess. We're very thankful of the people who developed the drug and the doctors who got us into the study because without them, my wife might not be here today!

Steve & Teri

Every case might be different, but we have been in compassionate use for about 45 days. Just got our second batch of zelboraf. We called to see if we still have to go to chicago every 28 days. They said to come back down at least one more time and that we'd get one more 28 day supply for sure, then sounds like our insurance will have to cover from there.

Every case might be different, but we have been in compassionate use for about 45 days. Just got our second batch of zelboraf. We called to see if we still have to go to chicago every 28 days. They said to come back down at least one more time and that we'd get one more 28 day supply for sure, then sounds like our insurance will have to cover from there.

Yep, kinda funny. Doesn't even sound batter backwards Faroblez?

Yep, kinda funny. Doesn't even sound batter backwards Faroblez?