In retrospect it is hard to believe that it took so long for Supatra A. to receive a diagnosis. In late November 2010, the 5 year-old was stumbling and actually knocked herself out. The GP thought she was OK, and when symptoms continued, it sounds like the family thought it was a concussion from the fall. However, a friend of the family who was a physician noticed asymmetry in Supatra’s face and encouraged the family to get her into the hospital. On January 26, 2011, the family were taken aside by a team from the hospital:
[…] Supatra had a brain tumour called Diffuse Intrinsic Pontine Glioma and that it was incurable and that the median survival time was 9 months. The doctor proceeded to tell us that the only hope of slowing down the progression of the tumour was immediate radiotherapy. She also stated that we should consider celebrating Supatra’s birthday and Christmas early.
Radiotherapy began on the 3rd of February, and the family sends away for what looks like folk remedies from Thailand, where they have family. Some of the symptoms were alleviated by steroids, but she had a strong reaction to them and by the end of February her appetite has grown significantly. Through March, Supatra is on radiotherapy, and she feels sick often.
On 16 April, Supatra had her follow-up MRI to see what affect the radiotherapy had on her tumour. It was good news in that the tumour shrank quite a bit but there was also a residual shadow around the remaining tumour and the doctors did not know how to interpret this. It was either dead tumour cells or something else.
A few days later the family is on a Make a Wish Foundation trip to EuroDisney. The next several weeks seems to be a constant fight with steroids, adjusting, and dickering with the doses.
In the first week of July, during a trip to Wales, Supatra’s parents decide that they will go to the Burzynski Clinic. The father makes an observation that is telling, and I think that it justifies the existence of this website:
After we came back I sent all the required info and they determined that Supatra could participate in the treatment outside of a clinical trial as they had recently completed Phase II trials and were trying to prepare for Phase III. However, as we progressed through July we (mainly me) continued to have doubts about this clinic only because I found it very difficult to find people that had undergone this treatment and post or blog in detail about their experiences with the treatment. I found this odd considering that according to the clinic hundreds of people have had a ‘complete response’ to the treatment. I also read numerous articles by medical practitioners on why Antineoplastons don’t/won’t work. It is very frustrating research as one day I would feel really good about the prospects because of something or several things I read and then a day or two later I would have my doubts because of something else I found. To go or not to go is the question?
That phase III trial, of course, never got off the ground, and Supatra would not have been eligible for it anyway, as it was for optic nerve glioma. Burzynski’s trials never get off the ground. They never get trials published. Ever. Here are over 60 unpublished trials, his complete repertoire of failure, as it were.
On 3 Aug 11, Supatra had another MRI scan to see what is happening with the tumour and we got the good news of stable disease. However, we also know that this is still within the honeymoon period after radiotherapy and therefore we are keeping our fingers crosssed that she remains stable until well after we get to Houston to start her on the Antineoplastons.
The family is going to take the QMII over to the States and then drive to Houston. They leave for the US on 29 August. The night before they set sail, Supatra’s dad discusses the problems he has with getting doctors in the UK to sign on to the treatment:
I find the search for a supporting doctor in the UK very frustrating. I don’t see where the problem lies even though Supatra’s Dr. has explained her and the oncologists teams position. A Dr. just needs to monitor, pass on medical info to the Burzynski clinic and be responsible for ordering blood work and MRI scans and more importantly needs to assert that they are Supatra’s Dr so that the FDA and the Burzynski clinic can be sure that an out-patient has medical support in their region. The UK Dr. keeps saying that they do not know anything about the treatment but at the same time they have not even contacted the clinic to try and determine what information and help would be provided to them and get in more specific terms what the UK Dr.’s responsibility would be. The UK Drs keep talking about Burzynski pushing off responsibilities and risk onto them yet this is no different then other clinical trials being held with patients in divergent locations.
It looks like the family has come away from their consultations with the Burzynski Clinic about how clinical trials are carried out in these cases, and I encourage you to explore that topic for yourself. Burzynski’s team seems to have suggested that if the family goes into a trial (with a hope of publishing) that they will receive either experimental cancer treatment or placebo. This is not how these type of trials are run, as it would be positively unethical to do it. The vastly more likely scenario would be a randomized trial of standard therapy versus experimental therapy. I encourage you to read the passage and see if that is a fair assessment of what her father is saying.
On 7 Sep 11, we have our first appointment at the Burzynski clinic and on the same day she will get her baseline MRI scan done and we have a doctors appointment for Friday 9 Sep to get her sub-clavical catheter inserted. The clinic hopes to get Supatra started on the anti-neoplaston treatment by Monday 12 Sep 11.
On the 7th, they take the picture that so many other people have when they arrived.
By approx. 1130 Burzynski and the rest of the doctors came into the office and Dr. Burzynski proceded to explain some very basic information about the anti-neoplaston treatment. To be honest he did not really tell us any more then what was already available from his website and I think Burzynski’s presence is more for show then anything else as the other two doctors answered most of our questions. They did confirm that Supatra would need the antineoplaston IV treatment vice the capsules that they also use to treat other cancers as that was what worked best on her type of tumour. We were then asked to sign some more consent forms and waited some more for the next steps.
After lunch, they get hit with the bill:
Medical records review fee (initial application which we did before coming to Houston): $500.00
Initial consultation fee: $1000.00
Laboratory Deposit: $2850.00
Treatment Deposit: $10,000.00
Supplies Deposit: $1,600
Second months treatment cost (and cost each month thereafter): $7,600.00
New infusion pump: $7,000.00
Catheter insertion surgery: $3955.00
But that’s not all. And the father starts seeing how the Clinic deals with money:
The costs were not a surprise as these were explained to us prior to coming to the clinic but I did question some of the expenses that were further specified under the above headings which I feel should be discounted at least for the first two months because we are within the local area. These included items refered to as fees associated with being outside of the Houston area and considering we are now “local” and not international they should not be charged but they would not budge and stated these were already discounted prices compared to what insurance companies are made to pay. I was also told that I would need to pay and then make my own claim with my insurance company which is not what their international cliental representative told me. [emphasis added] Either way we came prepared to pay and want to at least try this treatment for the first two months and wait for the results from the initial post treatment MRI scans. If they show no affects then we can always withdraw from the treatment and we will go with plan B which is to take her to one of the main Cancer treatment centers in Houston and see if they have something else on the go that could help Supatra.
This is soooo fishy. Never allow someone to change the terms of payment on you. I’m so disgusted with this place. The family has already expended a huge amount to get there. The idea that they would simply walk away is absurd. The Clinic knows this and charges them out the wazoo. On the 9th, Supatra’s catheter is inserted in her chest.
During the next few days at the Clinic, they meet Olivia B.
We met another family from Hawaii that has a six year old daughter suffering from a GBM tumour that has metastasized. We talked a little about their experience with the Burzynski clinic and the treatment as they have already been here for a week. They were of the same opinion as us in that we as parents really do not have a choice when conventional medical treatment no longer is an option and you just have to do whatever is necessary to try and save your child.
Though we have not yet written about Olivia B, I am sad to report that she died in June 2012.
On 14 September the family starts Supatra on ANP and the family begins the training that will be necessary when they are inevitably forced to fend for themselves. In a few days, Supatra is feeling poorly:
We were told last Wednesday that as the antineoplastons work to kill the tumour cells it is normal for the brain tissue to swell with all the dead cells in there. This swelling is what creates the pressure and results in headaches and vomiting. If it occurs then we will start Supatra off on a low 0.5ml dose of Decadron steroid and increase as necessary.
This is bullshit. This is the “she’s getting well so fast it’s killing her” gambit. It’s not the first time we’ve seen it (see , and parents eagerly embrace the principle because it’s better than “the tumor is killing her so fast it’s killing her.” It could also just be the side effects of the ANP, which actually has rather strong side effects. Within a couple of days, poor Supatra has to wear diapers to go out to the Houston Aquarium, as patients’ water intake goes through the roof when they start on these sodium bombs.
On the 19th, the father reports:
Supatra is doing OK but I think some symptoms/side affects are starting to appear from the treatment. She seems to have a little brain fog, is more wobbly on her feet, has a little muscle weakness and feels more tired. The doctor discussed with us about her going back on steroids but we said that we wanted to wait a little longer; however, after our meeting with the doctor we had second thoughts and will probably put her on a low dose (.05mg) of oral steroids tomorrow morning as per the doctors direction.
On the 24th, we hear that well wishers back home are raising money for Burzynski and that the family is looking ahead to fundraising for Burzynski. It turns out that Supatra’s uncle in Thailand has taken an early retirement and is donating his entire $6000 retirement pay to Burzynski.
Nonetheless, on October 7th we hear that there have been more issues with payment at the Burzynski Clinic:
On Tuesday we had some issues with the Burzynski accountant when we found out that we had already burned through our initial deposit even though I was under the impression that this deposit would cover us for the full three week training term. They did not even have the courtesy to let us know that we had a $4,000 balance owing while we are showing up there everyday taking our time as we figured we were covered for the full three weeks. I will write a separate post on this issue and a few others that we raised for those that will come after us to the Burzynski clinic so that they have all the facts before they come. The Burzynski staff to include Dr. Burzynski his son, a doctor and Vice President of the Burzynski business, and their IR spokesperson all listened to our complaints and agreed to reactify some things and improve their services while deducting some minor expenses that we had issues with. Hopefully my post on this will be helpful to others so that they do not experience the same problems as we have had.
Charging extra for…being on site longer? This is such a damned racket. This is how it is at the Clinic. Whopping bill after whopping bill. They decide to start the discharge process the next day:
However, because of the financial surprises thrown our way by the clinic we told them we wanted to leave ASAP and start treatment as out-patients on a flat monthly case management fee of $7,600/month.
They also tell their friends that they will have to start their fundraising immediately, as the Clinic has blindsided them with additional costs. At least they did not do to Supatra what they did to Denise D, cut her off from treatment entirely (no step down) as she waited for a bill to arrive.
They still have found no doctor to take Supatra’s case back in the UK. That’s a HUGE red flag about Burzynski’s reputation.
On the 10th of October, the father writes an absolutely essential write up about how the finances at the Clinic are extracted from patients. The patient describes a bait and switch that we have come to expect from the Clinic. The systematic extraction of funds is so egregious and widespread throughout the account, I don’t think that I can do justice to the whole thing and respect fair use at the same time. So, I am going to link to the Wayback Machine, where the info will never be scrubbed.
According to Supatra’s father, the financial person could not account for charges, questionable charges were added, fees were surreptitiously added on, and the clinic allowed the family to run up a $4000 bill without telling them.
I was flabbergasted to say the least as I pointed out to the [financial] lady that I had asked for a detailed explanation of the $10,000 on the first day and she could not explain anything, yet here she is giving me a detailed list of costs that are deducted from the deposit. Of course we started arguing with her demanding to know why we were not told that we would be incurring such significant cost over runs and why the clinic could not come up with more accurate estimates of the first three weeks costs after having treated thousands of patients.
This is because they are not a reputable Clinic. This is what we are trying to convey to people investigating alt med cancer treatments. This was not the first time that patients have had this conversation, and it won’t be the last. The only procedure they do well at the Clinic is a wallet biopsy.
As an example, for the last week or so we were drawing the blood from Supatra on our own but at the clinic and they charge a $20 fee for this; so we had this removed. Some more examples of costs charged by the clinic to you is:$100 each time the doctor sees the patient
$95 each time you call the clinic out of office hours with a problem
$60 each day for training
$20 drawing blood
$395 per day for the treatment program
all lab work and then any supplies you use to include the IV bags the antineoplaston comes in.
Their $22,000 initial cost lasted them about 2 weeks at the Clinic. The father warns patients to prepare to pay up to $50,000 to visit the Clinic. It’s not incidental to these ethical lapses that the family still hasn’t found a doctor willing to cooperate with Burzynski:
This really is a no win situation and we must therefore find a doctor, someone, that is willing to sign this FDA form. I have been told it could also be a Homeopath doctor or a Pharmacist, it doesn’t really matter as long as there are doctor credentials attached to the name. Why, because the local surgery and Addenbrookes doctors are still obligated to look after Supatra and hence we would still be able to get her examined and have her blood analyzed privately.
This is not how reputable research is carried out. On the 17th, we see that the family is already exhausted by the ANP regimen:
Although me and [Supatra’s mother] are switching sleeping duties with Supatra every other night we are both getting very tired. It is becoming harder and harder to wake up in the morning in time to do the IV bag changes.
They see off patients Bille B. and Luna P. in October. They are both dead now.
They fly home on the 26th of October. They had an MRI before they left, which showed a 10% reduction, which is in reality not a lot, but the family holds on to that tightly, and who could blame them?
Back home, Supatra goes as a butterfly for Halloween and loves it, even if she has to use a stroller for some parts of it. Her teacher and friends are all really supportive and Supatra is happily back in class for short stretches. They have warm wishes for the friends they made at the Clinic:
Best wishes to Olivia, Luna, Joseph, Leyel and Billie; hope you are all doing well and on the road to full recovery.
I can’t find Joseph, but the other patients are all dead, including Leyel, who died the next January. The father seems to be in the Canadian Forces, is stationed in the UK, and is having a lot of problems coordinating with the NHS:
The Wednesday oncologist appointment was rather disappointing as they continued to insist that they could not support any of our medical requests like blood work and MRI scans which are associated with the treatment regimen. So much for the NHS. I certainly hope our system in Canada will not treat us the same.
Yes. You often lose access to real doctors and medicine when you sign up with Burzynski. It’s sad, but true.
On November 9th, we hear that Supatra is lethargic:
She is now the same as she was the last week in Houston, very lethargic, non-engaging, and weak. Over the last few days she has stopped eating and only nibbles from time to time. It has been a week since we took her off the steroids and I think the lack of appetite is a combination of coming off the steroids and the copious amounts of water she needs to drink with her treatment. The doctors have not yet suggested lowering the dose although me and Punny think that is what needs to happen. The last two blood works show her potassium dropping (making her more lethargic and overall sleepy) and her uric acid (indicates tumour breakdown, which can result in increased pressure within the brain) and sodium (which can elevate pressure within her brain) levels increasing.
They also interpret her bump in the uric acid levels to be a good sign:
The high uric acid is good news because it means the tumour is reacting to the treatment although she must now take a drug to help lower it. The high sodium although not at max is a problem and we will have to watch this closely and ensure we strictly monitor her sodium intake through food.
This seems a little premature, if I may. While a rise in uric acid levels may accompany chemotherapy and be caused by cell death, it can also precede chemotherapy, so it’s hard to say. They are interpreting it favorably when it may not be so clear.
Two days later, on November 11th, Supatra is lethargic and less and less responsive. Her father is quite eloquent and the story of what happens next is vivid and compelling and you should read it. They put her back on steroids, but she is unable to swallow, and she is fussing and maybe dizzy or in pain and can’t tell them what is wrong. They take her to the hospital:
However, approx 30 mins after arriving Supatra started acting strange and went into a fit/seizure (according to what the doctor thinks) as she had this very frightened look on her face and could recognize us no longer. She would look right through us, pull us near and hug us and then push us away as if our faces were frightening to her almost like she was seeing something very horrifying to her. I was trying to remain calm but inside I was in a panic as I thought the worst was happening. Both me and Punny were very frightened for Supatra and started to cry while telling Supatra that we loved her very much and each hugging her. We just could not believe that this was happening after she was doing so well on the treatment in Houston and showing a reduction in her tumour only a few weeks before. After what seemed like 30-60 mins Supatra started to calm down and appeared to be a little more responsive to our voices and questions. She indicated that she could see us and we used hand signals to communicate.
The verdict? The doctor has one explanation:
The doctor told us of her thoughts that either the tumour or parts of it had started to regrow and was putting pressure on sensitive brain function areas or that she may even have had a small bleed.
The parents have another:
[We] both thought that another scenario could be that the antineoplastons were having such an effect on the tumour that it could have caused the main tumour to break apart (causing fast swelling/pressure) or have affected one of the smaller ‘fingers’ of the tumour with the same result. We just can not believe that these symptoms that Supatra was all of a sudden having is tumour regrowth.
I don’t think she can see at this point. She is on a feeding tube and is not communicating verbally. The MRI before she is released from the hospital on the 14th (still unable to swallow) shows no noticeable changes to the tumor, but she is in a daze, not entirely there, and may have lost eyesight.
On the 20th, we get another update. Still lots of problems and there is no real certain way forward:
Since last update, Supatra continued to improve in her symptoms and so we (us and the Burzynski doctors) decided that we should re-start the antineoplaston (ANP) treatment on Thursday 17 Nov 11 on a low dose. The Burzynski clinic concurred with this plan and so we did just that. However, on Thursday early evening Supatra again had an episode like the week before; out of it, reaching out for us and wanting to hug, crying and making repetitive upper limb movements. We immediately took her off the ANP treatment and gave her her second scheduled steroid dose for the day. This did not improve the situation but we thought that coming off the treatment – if that is what was causing the reaction – would reverse the symptoms as before. However, over the course of Friday and Saturday Supatra did not get better but instead declined a little further not able to communicate properly although still talk and say words and she was very active/ agitated and would not sleep the first night and only a little on the Friday night.
The doctors want to see if she is perhaps having seizures or maybe if there has been brain damage. It’s a sorry state for the family.
It is heart breaking seeing Supatra in this condition and we keep trying to talk to her to let her know that it is us, her parents and that we love her. We have to constantly watch her as she tries to stick things in her mouth and rubs her left eye which is also irritated and bothering her. Her repetitive actions are continuous unless she is pre-occupied with an activity like walking or sleeping. She can not draw, count, nor do her ABCs. I don’t know what to do anymore.
By the 22nd, she is recovering slowly, but is off treatment.
Supatra is eating, talking, laughing and playing like she normally does and we are very happy to have her back again. We have also discussed our options with the Burzynski clinic doctors and we have the green light to start her back on the antineoplaston treatment on Tuesday 29 November. In order to be extra cautious we will re-start her treatment as if for the first time at an extremely low dose of 10cc for the AS-10 and 5cc for the AS2-1. Then the AS-10 will be increased each day by 10cc and the AS2-1 by 5cc every three days, until we reach the target doses.
At this time, the story of the A. family intersects with the story of Bille B.’s family. Billie was receiving a lot of press at about this time, and Supatra was mentioned in some of the news coverage. They hope to reach the target dose on Dec 18th. The month seems blessedly uneventful for the family and Supatra has a good Christmas surrounded by family from all over the world. January and February are mostly uneventful as well, though the Feb MRI shows a little lopsided growth. She is experiencing periodic rashes. She has an MRI scheduled for March 22. On the 25th we get an update:
The last week or so has been an emotional roller coaster ride for me and Punny as we watched Supatra getting more poorly almost on a daily basis. Over the last while Supatra has been getting noticeably weaker in her limbs and then her tiredness increased as well to the point where she was dozing off at least 4-5 times a day even when engaged in an activity. One minute she would be alert and the next she would be asleep and/or nodding off. Then at about this time last week we noticed her speech dramatically slowing and she was having ever more difficulty chewing and swallowing
They fiddle with fiddle with the steroids over this time trying to prepare her for a blood test, but she’s so up and down it’s hard to tell how much of a direct effect the adjustments are having. The MRI in any event shows less enhancement but no shrinkage. In April, Supatra is somewhat weaker, her speech slow, but there’s not a lot of change.
In mid-May, the family started to take Supatra off of steroids, but there were some problems. She started to have lots of little symptoms, and at this point, the parents seem to start wondering about what they could be doing differently or better. I know it will haunt them, but my god they have been so attentive to every need and change that I wish I could tell them that they did all they could. This tumor never really reacted to the ANP (only notably to the radiation), and even though they are seeing very little change in the tumor, it sounds like there does not need to be a large change for it to have dramatic effects. As May continues, she is fading, getting weaker. Her eyes no longer both blink and she is often nauseated.
On May 28th, she was perky, up early and dancing for her parents, but in the evening, she was tired. She is sleeping a LOT. Their scan on the 30th reveals a new lesion on the brain stem. She is losing control of her body:
On Thursday 31st May […], Supatra’s symptoms did not change and she continued to be tired and very weak. I also noticed that her speech was even slower taking 10-20 seconds to sometimes react to our questions and then mostly answering in one syllable words, whispering no and yes to our questions. At this point we had to help her everywhere and we have this little potty chair that sits next to her bed and over these last few days downstairs when she is on the sofa so that she does not have to move far to go and wee. But at this point she even needed help with this and on occasions could only stand by making her legs stiff. Her ability to sit on the potty or loo on her own was now pretty much gone as she could noticeably no longer support her upper body.
She was losing control of her lower body as well over the next few days. And then she was non-responsive. And then she was gone. She died in the morning of 5 June 2012.
When I think what this family went through, what was in store for them as the Clinic stripped them of everything they could while they were there, I recommit to this cause. This type of stuff has been going on for far too long. See for instance the lengthy legal history which includes a case in 2000 where not only was Burzynski told by a patient that his billing practices were bad, but was sued for them. Trust me, he know. Trust me, he does not care.