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...Has Anyone Been Treated by Dr. Burzynski?

I have been following the recent stories on Dr. Burzynski and his fight for FDA approval. If anyone has been treated by Dr. Burzynski or know of someone treated by him please contact me. We had contacted his clinic when Michael was first diagnosed but was shocked at the high cost of the treatment. That was when we turned to Duke University and Dr. Friedman.

Now, with all that has happened the past five weeks with Michael, we may want to take a second look at Dr. Burzynski. We hear he is a hoax but I have never see any evidence of a hoax. So if there is anyone that has gone to Dr. Burzynski's clinic for treatment could you please let us know about how the treatment worked, or didn't work.

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...Washington University and Dr. Friedman Agree on Treatment

Dr. Friedman from Duke Hospital phoned over the weekend to say he was in agreement with the treatment plan Washington U doctors decided to try on Michael. Michael and Kristy are at Siteman Cancer Center today to get a mouth plate fitted for the first of five radiation treatments scheduled for Wednesday. After they finish with the mouth plate they will be meeting with a chemo-therapist to get started with the Temadol chemo pills.

Help Fight Cancer with Fitness By: David Haas

No one looks forward to a battle with cancer. Many times, when people are given this diagnosis, they fall into emotional despair and question their own mortality. However, physicians and wellness experts advise that there are ways to be proactive in the fight against this deadly condition. People can better all aspects of their health, even while undergoing cancer treatments, by exercising.  Exercising can help all different types of cancer from common cancers like breast cancer to very rare diseases like mesothelioma.


Indeed, being active and forcing one's body to go through daily activities helps people escape the temptation to lie in bed and feel sorry for themselves. As much as they may want to shut themselves up in their homes, they are better off getting outside and walking, jogging, lifting weights, doing some gardening, or other aerobic exercises, than they are sitting around their house. Isolation leads to negative thoughts and overwhelming fears. Exercising lets that person experience control over his or her own body. Fitness releases endorphins that in turn not only help better ones mood, but also increase energy levels which is crucial in fighting cancer.

Exercising also encourages people to gain better emotional health. In fact, people who suffer from depression are often advised to walk up to 30 minutes per day. This holds true also for cancer patients. The physical exercise boosts receptors in the brain and reduces chemicals in the brain that lead to depression and anxiety. Even more, if people exercise in a group setting with others, they can use that time to socialize and make friends. Having a strong support system of good friends and family members proves to be vital in a persons' battle against cancer.

Once a person is in remission, he or she may be able to keep cancer away by adhering to a healthy lifestyle. This includes staying away from excessive alcohol use, as well as using tobacco products altogether. They are also advised to eat leafy green vegetables and fresh fruits daily. They should also continue to exercise at least 30 minutes per day. These lifestyle adjustments boost their immune systems and keep illnesses at bay.

Want more information? Visit David Haas on Twitter.

Kristy's Story...New Treatments to Start Next Week

We aren't sure where, Washington University or Duke University, but new treatments will start next week. Michael has an appointment Monday at Washington U to be fitted for a mouth plate. He has to wear it for the radiation treatment scheduled for Wednesday. He also has an appointment with a chemo-therapist Monday to get him started on Temadol chemo pills. But all this depends on what Duke U comes up with.

The recent MRI and all records from Washington U have been sent to Dr. Friedman at Duke. He called today to say he has received everything and will be working on a plan tomorrow. Once we know Duke's plan we can make our decision. Duke may want us to go on with the treatment with Washington U.

I will let you know what decision we make.

Kristy's Story...Life Goes From Bad to Worse

Shane had a new MRI done Monday. Yesterday Michael and Kristy went to Siteman Cancer Center to get him prepared for the Gamma Knife procedure. I had the kids here so they stopped to pick them up after their appointment. I knew as soon as I saw them there was big trouble. They both looked like they had been crying and Kristy could hardly walk. Michael's tumor had grown so big they can't do the Gamma Knife. It is close to the size it was when Dr. Friedman removed it less than a month ago. The Washington University doctor said he has never seen a tumor grow that fast. He then told Michael he was not going to survive and there was nothing that could be done.

But Eric, the first person we met with at Washington University, was also in the room with them and as they were leaving he stopped them. He said there was one other option, he could use an extension to the Gamma Knife. There are only four in the country and he has one of them. It is a radiation treatment with the precision and strength between regular radiation and the Gamma Knife. The radiation treatment would have to be done over several days by sectioning the tumor off into smaller sections. He wants to see them on the 31st to go over his radiation plan and start Shane on chemotherapy.

In the mean time they have calls in to Dr. Friedman at Duke. They want his opinion and maybe even the possibility of removing it again. We should have an answer from him soon. Pam (Kristy's mom)