Back to the Blogging

I am back to the blog. Why have I have been gone this long? I guess the best excuse it being lazy. The other excuse is not having a computer for a while since we put our house on the market. Having the house on the market is almost as bad has moving your own stuff from home to home. I hate moving and by that I mean moving all your stuff from one place to another. We all know that sucks.

Well to what is going on with Kristofer Peter Beinder. First, my cancer is progressing once again. Like this is new. It is to a point that I need to something soon. The clinical trial went well but I had some serious side effects. I broke out in a major rash twice so I was dismissed from the trial. It is crazy. I find something that works and I can not use it.

The drugs that were working were Sorafnafib and Tipifarnib. We asked my doctors if I could take one of these drugs. They recommended trying to get approval for Sorafnafib. We tried to get approval from our insurance company. What a joke. They denied us from getting the drug. It is truly unreal how they deny something that was working for me. The say it is not FDA approved for my cancer. Well nothing is. Drug companies are not going to invest money in rare cancers. Whey would they. You however would think that the insurance companies would want to try to help people vs. not helping them. Right now the only thing that I can get are Clinical Trials Phase I.

A Phase I clinical trial is: Drug companies testing the toxicity of chemo drugs. They give these drugs to a certain number of people and they keep increasing the doses as they find a certain dose level is not to toxic for cancer patients. They have an idea that the drug may work but not certainty. You are basically a Guinea pig.

I will write more tomorrow regarding Alek and my recent visit to Dana Farber.

I also from this date forward will promise to write once a week in this blog. Sometimes it will be more frequent.

Tomorrow is Dave Antoniolli's bachelor party part 2. We will be golfing. I am so happy that Dave found Jess. The two of them are great together. It is awesome to see the Chief (Dave) in love. Way to go Chief!!!!