what happens when the options run out?

Dear Friends

I have been battling with mets for a number of years with some success. At one time, I had liver, lung, brain and bone mets. Several times, I was told it was "time to get my affairs in order. " ( I hate that phrase! ) But each time, I was lucky to bounce back. The liver mets are gone, the extensive bone mets are gone, it appears the brain mets are gone and I am left with lung mets.

But I am running out of options for treatment. Right now I am on Doxil and I think I am once again responding but having trouble with colitis so he is going to have to again reduce the dose. But after that, there isn't much left.

I don't qualify for clinical trials because of either the brain mets. or too heavily treated or because my lung mets are not measurable.

And yet to look at me, you would never know I am sick. I don't need any treatment for the lung mets, I have no pain except from the chemo induced colitis, and I spent 8 hours today running around getting my oldest child ready for college.

My onc says I fall into the black hole of oncology, I have outlived the standard options, have had good responses so I am not that sick from the cancer but don't qualify for the trials.

I have tried to get some of the trial drugs on compassionate use. For the most part, it is fruitless. The drug companies have no motivation to help, don't want the expense and say they don't want any trouble from the FDA if they give the drug outside of trials.

So what do I do? I can't really go out of the country, I still have young kids at home. I have contacted my congressperson and they are trying to help but again, there is nothing requiring drug companies to do anything. I tried to contact the networks and they say this is not a story that people would be interested in.

I hate to be dramatic but it almost feels like sanctioned murder. ( sorry, I know that sounds strong ). There are drugs that might help me that I can't have access to because the drug companies refuse to help and yet I have very few options left.

If there is something I am missing here, I am all ears.

With people living longer and longer with stage IV disease, I am sure this will become more and more of an issue. I feel that there should be something in place by the FDA that says if a patient has run out of standard options and has no medical reason why an experimental drug can't be tried, then once they sign a release of liability, the drug company must provide the same access to drugs that patients get in clinical trials.

Anybody have any suggestions? I just can't see not doing anything because no one will treat me when I am physically in pretty good shape and don't want to go upstairs yet.....