*An appeal to help get Congress to take action follows this story*
When you read the Caring Bridge blog [the source of this story unless otherwise indicated] from the S. family at the beginning of their story, you may be confused. Andrew was diagnosed with a brain tumor only days after his mother was diagnosed with breast cancer, so the planning for Andrew’s initial round of radiation coincides with his mother’s biopsy. I just can’t imagine what the family has been through.
On the day before Halloween 2007, Andrew has a port implanted. He begins chemotherapy and radiation the next day. He does a week on chemotherapy, but is soon taken off. The same week, his mother has the mass removed from her breast. By the 11th, his mother is able to be with her son at the hospital. The poor kid gets salmonella while in the hospital and has complications from the antibiotic he is on. The family can’t catch a break.
On November 14th, we hear:
Finally, some of you are aware that we have found a clinical trial (in Houston, Texas) that may possibly help Andrew. I will post more information about the trial as soon has I have time.
And the next day:
Finally, there have been some questions about the treatment we are pursuing for Andrew in Houston. Rather than giving you my own interpretation of the information, I’m going to give you a web address so that you can have as much information as you would like to have. Please, go to [website redacted] to check out the Burzynski Clinic. Andrew will finish his radiation treatments here before going there. (His treatment here should be finished around December 14.) They have tentatively said they would like us to arrive on the 26th or 27th of December. We are working out the details.
Andrew will finish radiotherapy before going to Houston. He has a bit of crisis late November, which lands him in the pediatric ICU after his sodium dropped and he was having seizures.
The radiation may be having an effect by the end of the month:
Written Nov 29, 2007 12:32am
Andrew had an MRI done over the weekend. The report indicates “a large oval shaped mass which appears to originate from the right side of the pons.” (This is part of the brain stem.) The report also states, “…the mass does not appear larger and may actually be minimally smaller.” Dr. Saah said that the MRI itself shows that there is increased space between the mass and the back of the brain and that there is not as much swelling as there was when the first MRI was done on October 25th.
And the poor kid gets a damned kidney stone and UTI for Christmas. He still has salmonella.
Andrew is a clever, thoughtful kid. His parents take down all the weird little things that he says, and you should read them. There is a brilliant innocence in his use of language. My favorite example, I think, comes on December 7th:
Written Dec 7, 2007 8:51am
I’m having a PET Scan this morning, and Andrew has had lots of questions about it. A minute ago he told me, “I’ve had PET Scan.” I said, “You’ve had a CAT Scan.” He said, “Oh. (pause) Well, a cat is a pet, so I thought they were the same thing.”
Good news on the 15th. The cancer has responded to the radiation:
Written Dec 15, 2007 12:27am
Andrew’s CAT Scan report says “…the size of the mass is dramatically decreased.”Evidently this is somewhat unusual–even as a result of radiation. The nurse practitioner who works with oncology at the hospital has requested dimensions so that we have more of a specific understanding of what has happened.
Two days later, he’s back in the hospital passing kidney stones. Also:
They are checking on the possibility of scheduling an MRI (of the brain) for today–while we are still in the hospital. (It was originally scheduled for tomorrow night.) We need this MRI for the Burzynski Clinic.
His first appointment at the Burzynski Clinic is on the 27th at 9AM.
We met with Dr. Burzynski and one of the other doctors today at the clinic. Andrew will be having an MRI in the morning. There needs to be disease progression in order for him to begin treatment with the antineoplastons right away. (This is an F.D.A requirement; this medication is only available to those enrolled in a clinical trial.) If there is something–even something small–in the MRI that would indicate disease progression, Andrew will be able to begin the treatment. If not, he may become a patient of Dr. Burzynski’s in his private oncology practice; he will be treated with an oral medication–already F.D.A. approved–which is in the antineoplaston family. Being treated with this oral medication does not disqualify Andrew from being enrolled in the clinical trial in the future.
The financial side of this became more of a reality today as we paid–up front–for the consultation and began to look at the payment schedule for treatment with the antineoplastons or for treatment as a patient in Dr. Burzynski’s private practice. Andrew’s medical needs are fully covered in the state of Michigan, but only emergency care is covered out of state.
It is important to note at this point that the family believes that the treatment has had some success. This can not be backed up with meaningful clinical studies.
On the 30th, this update:
By the time we arrived back at the Burzynski Clinic, it was close to 4:00 pm. One of their doctors went over the films with us; he told us that there had been about a 10% decrease in the size of the mass since the last MRI only ten days earlier. The fourth ventricle of the brain–which had previously been pushed aside by the mass–now looks normal. Another doctor explained that because of this good news Andrew does not qualify for I.V. antineoplastons (one of the clinical trials) at this time. He will be seen in Dr. Burzynski’s private practice instead.
We met with one of the doctors who works in the private practice, to go over the specifics of Andrew’s situation. We will be continuing to taper the decadron (the steroid). Today we cut the dosage down to 3 mg (from 4 mg) in the morning and 2 mg at night. We also raised Andrew’s zyrtec dosage from 5 to 10 mg to see if that makes a difference with his chronic sinusitis. (This is something that shows up on the CAT Scans and MRIs.) We are discussing the possibility of switching him to Singulair because he also seems to benefit from the use of an albuterol inhaler at times. (Singulair would cover allergy AND asthma symptoms.) Andrew also takes Prevacid (15 mg twice a day)
The day after this consult, a Saturday morning, we get an example of the fine care that you receive at the Burzynski Clinic for top dollar:
We sat in the waiting room until we were the only ones left. I knew that the port needed to be checked, and I had heard that the workers try to be out of the clinic by 11:00 am on weekend mornings. I was becoming concerned about the time, so I said something to the nurse. We were taken to a room at 10:15 am to speak with the doctor on call. I quickly realized that they were not planning to touch the port; it was getting late, and if a problem was discovered it would take too much time to resolve. I had to insist that the port be checked because we needed to know if it was working. It still would not draw, and the area around the port seemed irritated. (Andrew had been complaining all morning.) The clinic staff member wondered if there was swelling and suggested that we go to the Emergency Room.
By the time he gets to the hospital, blood has soaked through the port’s dressing. He is ineligible for the “clinical trial” because he has just had radiation.
Written Dec 31, 2007 1:00am
Someone has asked how we are feeling about the way things are going here in Houston. Andrew is not on the I.V. antineoplastons because he does not qualify for the clinical trials yet; however he is taking an oral medication (sodium phenylbutyrate) in the antineoplaston family. Rather than waiting for disease progression, we are attempting to fight the glioma before it advances. The I.V. antineoplaston statistics are encouraging–about 30% of patients have a dramatic or partial response to the medication (the mass is completely or partially gone), about 30% of patients become stable (no change), and about 30% of patients experience disease progression. Since most of the Burzynski Clinic brain tumor patients are on the I.V. antineoplastons, there are no statistics for the oral medication. One of the doctors said he felt that being seen in the private practice was better for Andrew because the treatment will be based upon exactly what Andrew needs rather than on the strict rules of a clinical trial.
What is so aggravating about this is passage the way the information is presented to them. The stats that they receive is that 60% of patients are at least stable. Burzynski does not have the clinical trials to back up this assertion. A further complication is that “any response” and “complete response” are grouped together in the same group. Seems very disingenuous to me.
Andrew’s mother returns to Detroit to begin her own chemotherapy on the first. It’s amazing how rarely she mentions her own condition as she documents this story. Her priorities are clear.
After the mother left, the Clinic springs chemotherapy on the family:
While [the mother] was preparing to start her chemo, we were surprised to learn that Andrew’s doctors in Houston are recommending a chemotherapy (Temodar) for Andrew which would go along with the oral medication he has been taking. The doctors were wanting to start it today, but the [S family] want to discuss this option — and the possibility of doing it at home — with their oncologists here in Lansing.
He’s back in the hospital trying to pass one of his kidney stones (there are 3) but gets out around the 12th. We soon hear what Andrew is on:
Written Jan 15, 2008 1:41am
Andrew began treatment under the direction of the Burzynski Clinic again today. He will be on three different medications–PB (the oral medication in the antineoplaston family) to help bring into balance the relationship between the oncogenes (onco refers to cancer) and the tumor suppressor genes. (In those who have cancer, this relationship is not right.) The other two medications will target specific oncogenes found to be a problem in Andrew. The first medication will target VEG-F which relates to a tumor’s blood supply. The normal level for this is anywhere from the 40’s to the 90’s. Andrew’s is over 200. The second medication will target another oncogene which is at the very top end of normal in Andrew–right on the borderline between normal and abnormal. Since I don’t fully understand this particular oncogene yet, I can’t explain it!
On the 17th, a phone consult with the Clinic:
I listened by telephone to the meeting with Dr. Burzynski this afternoon. We are proceeding as planned–with the three medications; we are also lowering the decadron dosage. (We are supporting Andrew with two natural anti-inflammatories while we do this.) Dr. Burzynski indicated that it is unusual to see the results we have already seen from radiation alone, and that Andrew is doing extremely well. We have been told that dramatic response to treatment usually indicates a more aggressive tumor or cancer. He said that sometimes that is true, but not always.
Things proceed fairly uneventfully until we get the next update:
Written Jan 25, 2008 11:57pm
[…] We had a great appointment with Dr. Gera, Andrew’s oncologist, on Tuesday. She spent so much time with us that she got behind with other patients. We went to have some lunch to give her a chance to catch up; then we went back so she could examine Andrew and talk with us at length about the Burzynski Clinic recommendations. We were having some difficulty at that time getting a doctor from the Burzynski Clinic to contact Dr. Gera. Because of this, we are still sorting out their recommendations and discussing them–along with their reasoning. God has blessed us with a wonderful doctor who truly wants what is best for Andrew and for our family. We are so glad that we are home and that Andrew is under her care!
In mid-February, as the family seems to be off-treatment in anticipation of having the kidney stones treated, the family starts to discuss other, better courses of treatment than the Burzynski Clinic:
Written Feb 18, 2008 10:50pm For several weeks we have been communicating with Dr. Kathy Warren at the National Institutes of Health/National Cancer Institute regarding Andrew. She looked at Andrew’s MRI to confirm the diagnosis (diffuse intrinsic pontine glioma) this past week, and has been very helpful in discussing (by e-mail and by telephone) treatment options with us and with Andrew’s oncologist. We are extremely impressed–and grateful–with how accessible Dr. Warren has been. She is not–yet–Andrew’s doctor; however, she responds to our e-mails and phone calls almost immediately. She has not tried to talk us into the clinical trials she is overseeing, but has presented them to us as options and has been willing to discuss other options (the Burzynski Clinic recommendations) as well.
I am including part of a note I wrote to Dr. Warren earlier today because it accurately expresses our feelings about Andrew’s situation.
“…We understand the medical bottom line of Andrew’s diagnosis; however, we don’t want to live as if his life is over. He is full of energy, with relatively few physical problems–other than decadron side effects–right now. We know of kids who are doing okay with this diagnosis–2, 3, 4 and more years later. We can’t be assured that Andrew will be one of those kids, but neither can we be assured that he won’t.”
At some point, all mention of Burzynski simply….disappears. At some point I realized that I was simply following another patient’s progress through conventional, experimental treatments.
On March 2nd, we hear:
Andrew will be taking part in an Imaging Study under Dr. Warren’s direction. Dr. Warren’s research nurse is scheduling us to go to NIH some time in April. Dr. Warren has also encouraged us to take Andrew to see Dr. Stuart Goldman at Children’s Memorial Hospital in Chicago. We have already spoken to Dr. Goldman, and the plan right now is to wait to schedule an appointment at Children’s Memorial after we have the results of Andrew’s next MRI on March 10th.
So it seems that something has happened. A decision has been made. You would not know why they changed out of the Burzynski Clinic unless you go to the timeline in the family’s “my story” page:
Andrew’s parents decide to stop the treatment recommended by Dr. Burzynski after conducting research and realizing that the children they could find who had been treated at the Burzynski Clinic for pontine glioma had not survived.
The family realized what skeptics know, that what happens in Houston does not save lives. Now, there is a note in March that the tumor had shrunk something like 65% from December. However, we can’t necessarily attribute that to Burzynski’s treatment, as Andrew was excluded from the clinical trial precisely because the results would have been muddied. Thankfully, the S. family had a longer time with Andrew after diagnosis than most families, 25 months, and it’s clear he brought much joy to his family.
UPDATE, July 2014
In private communication from Andrew’s family, we were informed:
“There were red flags for us all along the way, but pulling away from the Clinic was not easy. It’s a cult-like environment. You feel like you are walking away from the group who has the answers. You are going to become one of those people who don’t understand and who don’t believe…. It was traumatic. That is why we simply stopped mentioning it on the website. We officially ended our relationship with the Clinic mid to late February 2008. We just did not know how to explain what we had just experienced.”
Usually, this is where we would put an appeal to donate to St. Jude’s. You may still do that, if you like, but we are now actively campaigning for an investigation into how the FDA decided to allow Burzynski not only to continue his ridiculous trials, but to actually get a phase III trial after a decade of abominable site visits. Go to thehoustoncancerquack.com and you will find the resources you need to put primary documents–the FDA inspection notes–into the hands of your representatives so they can conduct an investigation. All appeals to understand this made to the FDA have failed, so now we need to press the issue onto the committees that oversee the FDA. Please help us uncover what went wrong so we can fix it and so this never happens again.