Short intro about the blog

This blog is about our journey to healing with Grade 3 Anaplastic Oligoastrocytoma

Tuesday, February 7, 2012

The Burzynski Clinic

The past two days have been hectic and draining.  We had our first day at the clinic yesterday.  It started with a brief overview of the possible treatments with a coordinator, a check-up with a nurse, then a consultation with one of the doctors.  Dr. Szymkowski met with us to discuss Adam's medical history and confirm the details of his brain cancer.  She also briefed us on the two possible approaches that Dr. Burzynski would take in Adam's case.  The first case scenario is his patented antineoplaston therapy.  To qualify for that therapy, you have to apply to the FDA for special permission, and show that the cancer is "persistant" after using traditional therapy.  Well, we assumed that this approach would not be appropriate, simply because the tumor has been removed and hasn't had time to become what could be considered "persistant".  We then got to meet the man himself!  The meeting lasted less than 10 minutes.  He briefly explained that he would most likely be using a "gene targeted" approach to treat Adam's cancer.  This means that they have tested the tumor sample against different medications, and will prescribe only those which have demonstrated effectiveness in testing.  Sounds good.  One of the medications is sodium phenylbutyrate, which is one of Dr. Burzynkski's signature medications.  We were definitely excited about that one, because obviously we can only get that here.  After being shuffled around a bit more, we were then sent to the financial coordinator.  She showed us the fee chart that we had already received in our information packet.  So, no surprises there.  But... then she starts lising the medications that Dr. Burzynski has prescribed for Adam, which are not included in the treatment costs.  Sprycel... $8,314.80.  Votrient... $3,098.40.  Avastin... anywhere from $2,000 to $6,000 per infusion.  This is per month.  Yep.  Oh, there's more.  Temodar can cost up to $7,000.  Per month.  Add it all up and we're talking about $25,000 per month for prescriptions.  It felt like my heart had fallen through the floor.  It was totally unexpected.  Yeah, we knew Adam would be put on some prescription drugs, but we assumed we were looking at hundreds, not tens of thousands of dollars.  We told her there was just no way we could proceed with treatment.  She made a few calls, and gave us a stack of financial aid forms for the different drug companies.  But we left feeling totally deflated.

At home we started talking.  I did some online research into the drugs, and really didn't like what I was reading.  Side effects like "severe or like-threatening liver damage", and "may cause you to develop a hole in the wall of your stomach or intestine".  My favorite one was, "may cause abnormal passage in the body".  Abnormal passage?  So, not only would we have to spend $25,000 a month for the drugs, but Adam might develop a whole host of other problems as a result.  I know that these side effects don't affect everybody, but as my sister pointed out, Adam has had 2 cancer diagnoses before the age of 37.  He does tend to be in the minority.  We also discovered something else.  He's already taking most of these drugs in herbal form.  Green tea extract, turmeric, and milk thistle all have the same anti-angiogenic properties as these synthetic versions.  And they each cost us about $15-20 per month.  In one study, mice with stomach cancer were given green tea extract (ECGC), and the results demonstrated that ECGC reduced the tumor mass by 60%. The authors of the study concluded that ECGC is a "promising candidate for antiangiongenic treatment of gastric cancer".  If you read the information given on the drug websites, they actually point out that these expensive synthetic drugs have not been proven to extend life or to reduce mortality of any cancers.  So, now we are scratching our heads wondering, why on earth is this guy prescribing this stuff to Adam?  Well, Adam decided he's having none of it.  No drugs.  We can't afford it, and he refuses to put that rubbish in his body.

I would love to write more about what happened today, but my fingers are cramping up on this dang laptop keyboard.  I'll continue tomorrow morning...

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