Kristy's Story...Benefit Reminder, This Saturday

Just a reminder that this Saturday, December 3rd, is the benefit for Shane Thomas and his family.  It is being held at Durham Park in House Springs, approximately 1/2 mile from Highway 30 on Carol Park Road.  (flyer attached)  You can call me on my cell phone 314-852-8025 if you need further directions!

We'll have two 50/50 Raffles, Silent Auction Items to bid on, Gift Card Lottery, Cake Walks, and Live Music from my husband's band "UNLEADED" from 7pm-12.  Please come out and support this family!  I'm hoping to sell the place out! Forward this email on to all of your address book contacts!        

 

Thank you,

 

Stacey  (Kristy's sister)

PS - If you are unable to attend but would still like to make a donation to the family, you can do so at http://kristysstory.blogspot.com.   THANK YOU!

 

Kristy's Story...Just Our Luck

Michael was ready to go for his fourth radiation treatment when the phone rang. It was Eric from the Siteman Cancer Center saying the radiation machine (Gamma Knife) is broke. So they had to reschedule for this Friday morning, if the repair is finished. He will also see his chemo doctor Friday because he was approved for the Avastin drug. He will get that injection after the radiation Friday and every two weeks thereafter.

Michael has had some issues with his treatment but nothing serious. Mainly getting dizzy and/or sick to his stomach. He lost two of his Temadol chemo pills due to being sick. He takes two at a time three times a day for five days. Then he goes off the pills for three weeks then another five days on. His prescription is for eighteen months, sounds like a long time to be on chemo...but if it works we'll take it.

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.