Kristy's Story...Spoke With Dr. Burzynski Patients

We decided to look more into Dr. Burzynski's clinic. Most of the information seems very good. As a matter of fact it sounded so good we decided to look up some of his patients and try to call them. We were actually able to reach two of them and had long conversations with both. We were very impressed with their outcome and decided if more treatment is needed after his radiation and chemotherapy we would head to Houston and meet Dr. Burzenski. They both highly recommended his treatment.

As of right now Michael has had two radiation treatments and is scheduled for three more. This coming Monday, then Wednesday, and the final one the following Monday. He started the chemo pills Temadol Thursday evening. And last we are still waiting on insurance approval for another drug, Avastin. The following is a little information on the Avastin drug:


May 6, 2009 -- The FDA has approved the drug Avastin to treat a type of brain cancer called glioblastoma that progresses despite treatment with other therapies.
Genentech, the company that makes Avastin, announced the FDA's approval, calling Avastin the first new treatment for glioblastoma in more than a decade.
According to Genentech, the FDA based its approval on two clinical trials that together included more than 200 glioblastoma patients. Between 20% and 26% of patients showed a tumor response to Avastin that typically lasted for about four months.
Genentech notes that no information is available from clinical trials showing that Avastin eased disease-related symptoms or increased survival among glioblastoma patients.
Avastin inhibits a protein called VEGF (vascular endothelial growth factor) to curb the growth of new blood vessels that supply blood to tumors.

We will keep you informed on Michaels' progress.

Kristy's Story...Michael's Tumor Will Never Be Gone

Once again Michael and Kristy were hit with another bomb. First they met with the surgeon and radiologist yesterday to be fit with a mouth plate he needs to wear for the radiation treatment tomorrow. They were told because Michael has had radiology before there is a up to a 10% chance of some permanent damage. Fallout from the radiation could go into his brain over time. they won't know the full effects for months after the treatment. Also this treatment will be the final time Michael could ever have radiation.

Then they met with the chemo-therapist for some more bad news. Their doctor said no one has ever been cured from his type of tumor. There are treatments to slow down the tumor, such as the radiation and chemo, but he will always fight this tumor. Michael will start the chemo tomorrow when he does his first radiation treatment.

Besides this on-going treatment Michael and Kristy are searching for clinical trials. Maybe there is a cure but no one knows it yet...let's hope.

If anyone has gone through this same brain tumor fight, or knows of someone who has, please tell us what you tried, especially if a treatment worked...we are getting desperate. Even if the treatment was unconventional, food to eat for a special diet, pills or drinks from a health store, went to another country for treatment, or any other knowledge you can pass along to us.

Kristy’s Story…Living with Headaches

Michael has lived with terrible headaches for over two years now, but you never hear him complain. He just sucks it up and goes on. He has been on 750 mg of Vicodin for a long time but that didn’t help much. So he had been taking 2 at a time just to help his headache for about an hour or two. Now his doctor at Duke put Michael on Oxycodone and a steroid to reduce swelling. But even with this stronger medicine he is still having headaches only now he is not getting all the Tylenol.  Apparently Vicodin has Tylenol and too much Tylenol can cause headaches. Michael has always been fine except for the bad headaches and the shaky left hand but lately he is experiencing coordination problems and dizziness.

I will tell you more about this tomorrow.