Taylor M. was 2 1/2-years old on January 11, 2002 when he was diagnosed with a glioma wrapped around his brain stem. He was weak on his left side, mute, and right his eye was crossed. The prognosis for this cancer is almost (but not quite) uniformly dismal, as we have seen several times on this website. The doctors at several different hospitals could offer nothing more than about half a year. This is, of course, an imprecise science. Really, survival times from diagnosis are tracked along a bell curve, and physicians’ interpretation is not set in stone, but rather a likely extrapolation of the current situation based on their past experiences. Long term there is very little variation in the outcomes, however. He was slated for chemo and radiotherapy.
According to an article in the Daily News which appeared on 21 April of that year:
Hope came in January, the day before Taylor was to begin chemotherapy, when a friend phoned with stories of success at the Burzynski Clinic. Taylor’s parents researched Burzynski and liked what they found – stories of children who went on to lead happy lives after their tumors shrunk.
Of course that’s mostly what you find–stories. This case offers a sad irony about how reliable the stories you find on the Internet are.
We don’t see what is happening to Taylor in high resolution, but in February 2002 he went to the clinic, like thousands of other families have. He had a shunt planted in his chest for the antineoplastons, the name of the chemotherapy that Burzynski was peddling at the time. But we hear on a post on a message board:
When we got to Texas to see DR. B our Doctor of 13 years said he can’t sign to watch over Taylor’s Blood work if he’s going to be on the treatment. Well, I wasn’t too scared God has shown us the way so far so I called my insurance comp to find a new Doctor and they told me about 15 names I just called one he is the head of pediatric oncology at Stony Brook University and he said, Yes that he’ll take Taylor as a patent and that he would sign the papers we needed to have sign so we can come home with the treatment for Taylor.
According the Daily News article, the treatment was costing Taylor’s family $10,000/month. (His dad told the reporter he’d be willing to sell his house to pay Burzynski’s fees.) He was on treatment for 3 years.
What precisely happened during those three years is unclear. In April, according to the doctor overseeing Taylor’s treatment in New York, the tumor had not changed since it was detected, and some of the pressure in Taylor’s head has been relieved, but the doctor says it could be due to the steroids that he is on.
In February 2005, on the message board, Taylor’s father makes a bold proclamation:
In that same post, Taylor’s dad made a bold proclamation:
I just got some GREAT news my wife was watching a couple of kids for one of [Taylor's doctor's] nurse and she came over to pick them up tonight. She told us that DR Parker is now giving Patent DR B’s treatment as one of there choices. This is big. He sees how great Taylor is doing and that his Cancer is NO MORE that God and DR. B of course. I will be on the news very soon. There is a lady for Entertainment Tonight that is [in] love with Taylor. She did the first news report 3 years ago when my company did a fund raiser and she now is going to do a new story about Taylor And Dr B. We’re going to fly to Texas and we’re going to get DR B’s treatment out and show them how well Taylor is doing. [emphasis added]
On Taylor’s page at the Burzynski Patient Group, his dad conveys the same information:
Taylor is cancer FREE and doing great thank God and DR B.
We contacted the doctor who was overseeing Taylor’s treatment, Dr. Robert Parker, to see if the treatment was or ever had been offered as a treatment in his department. We received the following reply:
The quote is only partially accurate. I did in fact tell parents, when asked, that one of our patients was being treated at the Burzynski clinic, that he was “stable”, and that we were obtaining requested lab monitoring studies at SB and forwarding them to the Burzynski clinic. I made no recommendations one way or the other regarding the therapy but did tell parents that it was ‘controversial” as there was never any published verification of the results claimed by Dr. Burzynski. We did not endorse the treatment and were not administering the therapy at [Stony Brook], but merely helping those families that chose to pursue this line of treatment by providing some degree of laboratory and medical monitoring.
We get a more accurate picture of what was going on with the tumor on June 16, when Taylor’s dad returns to the message board:
Hi everyone. Taylor has always been doing so well so I never put anything bad on here. Well, we need your prayers for our little Taylor. Taylor had a MRI last week and for the first time in three years the scan showed that Taylor’s tumor had grown 16% and I’m very scared it never change before it never decreased or increase and his been doing so well we don’t understand. I’ve been getting about 4 to 5 calls a month for parents of other children that want to bring there kids to DR B’s and I’ve been telling them that my son is Cancer Free and now this what do I tell these people now when they call me?? I’m so sick don’t know what’s going to happen I can’t lose this battle after all these years of him doing so good. [emphasis added.]
It appears that the claim that the cancer was gone was, understandably, the father’s fondest hope, perhaps his preferred outcome, and I have no doubt that in some way he really believed it. And how many people did he recommend the Clinic to based on that rather too optimistic interpretation? Maybe a hundred, at that rate? This is an object lesson in why patient testimonials are no substitute for hard data about efficacy. Most likely, the tumor was slow growing and the ANP did nothing. The steroids controlled the intracranial pressure (which may have been caused by the massive sodium load Taylor was carrying while on treatment).
I wonder if Taylor has been transferred off the ANP at this time and is on phenylbutyrate, the prodrug of antineoplastons, which Burzynski also sells at his in-house pharmacy. At least it sort of sounds like it as on 28 June we hear:
Thanks were going to increase his pills to 40 pills a day and just waiting for 4-5 weeks to do new MRI. God will bless him I know it.
On July 14, we hear what the Burzynski Clinic prescribes. More of what’s not working:
Taylor is doing OK he can’t talk too well or walk too well but DR b said that he can stay on pills he now is up to 60 pills a day poor little guy hates taking them we make a liquid. Thanks for your prayers very much needed right now.
A few days later, on the 19th:
DR’s in Texas are going to put him on IV and steroids and he’s not doing so well may God Bless him and all our little children bye for now.
Back on the IV, Taylor deteriorates even more, as we hear on Aug 23:
I need help Taylor is doing very poorly and I don’t know what to do he can’t walk or talk and I’m very scared that this is the last stage and he’s going to die on me and I can’t do anything else to help him he gets up at less 8 time at night to pee and drink but he cries the whole time he’s doing so. I don’t what to do I need some guidance PLEASE I don’t know what is next he was walking but he was dragging his left leg badly and yesterday he fell and now his right leg is just as bad as his left leg was and his right arm is not working if anyone can talk to me I don’t know what to do I’m losing this battle and don’t know how to handle it.
On the 29th, we hear that his right eye is now crossing. The next day, the local doctors are recommending radiation. ANP has failed. The father refuses and Burzynski agrees, which is incomprehensible given the trajectory that Taylor has been on. By September 24, Taylor can no longer sit up unassisted, hold his head up, talk, or move anything but his left arm and hand. He is still on Burzynski’s treatment.
On October 11, we hear the results of the most recent MRI, and the situation is dire:
It’s not good at all. His tumor had grown 50% in 5 weeks and they’re taking him off the treatment and we have to start radiation and chemo soon.
Usually, this is where the story would end. As far as I can tell, the antineoplastons did nothing to shrink the tumor at all. There is no reason to think that Taylor’s long survival was anything more than the type of outlier that you’d expect. But there is an interesting twist at the end that answers a question that I had wondered about. In January, after a number of surgeries for Taylor, his father says he’s waiting for Taylor to be released from the hospital so they can go to Mexico for treatment–apparently this radiation is the end of the road in the States. Other Burzynski patients and alt med patients chime in, warning Taylor’s dad about Mexico. They are clearly tuned into the presence and warning signs of quackery in Tijuana, which is as far as I can tell indistinguishable from that in Houston. Cognitive dissonance is extremely powerful.
Taylor died at 7:00AM on 18 May 2006. As of this writing, his “success” story is still hosted on the Burzynski Patient Group website, over 7 years after he died. The clinical trial that Taylor was in and his parents paid for over the course of several years remains unpublished.
For reliable information about clinical trials, visit to clinicaltrials.gov. Please contribute to St. Jude’s Children’s Hospital, which cares for sick children even if they can’t pay. Unlike Burzynski, who demands his money up front for obvious reasons.
On April 8, 2005, Erik M., 44, was reading a book to his 4-year old daughter, but the words looked wrong. He went to the hospital and had a CT scan, which revealed what was a stage 4 glioblastoma multiforme, a brain tumor. The prognosis was grim. The doctors thought he might survive anywhere between 2 months and 2 years. They started chemotherapy and radiation.
Two weeks after chemo treatment began, Erik had an awful, awful headache, which led to his getting an MRI. The tumor had doubled in size. His oncologists had little to offer (they said treatment was “not a cure, but it would prolong his life”), so the family decided to go to the Burzynski Clinic. On May 13, according to his Caring Bridge site:
[T]he family rolled into action getting Jay’s medical records faxed to Houston, Texas to see if he can get into an FDA clinical trial. Approval on that could come as early as Monday! We are all very hopeful. Please pray for a speedy answer.
On the 14th, we get an update and a quote from the Clinic:
As many of you know Monday will be a big day as we are hoping we will hear that Jay has been approved to participate in a Glioblastoma FDA clinical trial in Houston, Texas. For more information on this trial search under the Burzynski Clinic, Houston.We are also waiting to hear if Jay has clearance to fly. If he is not cleared to fly we have considered transporting him by motorhome. If anyone has info on motorhome rentals or some other alternative we would love to hear from you. We his family have begun to jump headlong into several agressive fundraising campaigns as this clinic trial is not covered by insurance and the cost of this potentially live saving therapy could go as high as $150,000.00. We have already laid the ground work by setting up a benevolent account to help us in this endeavor.
Donations can be made at any Key bank to
The Healing For Erik Trust
C/O Key Bank Washington
On the 16th, they heard that Erik was accepted for the trials:
An answer to prayer – Jay has been approved for the clinical trial in Houston Texas – at he Byrzinski Clinic. I say clinical trial, but the results have proved to be miraculous for some.
This last statement, of course, is yet to be determined, as the trial that Erik paid so much to be in has still not been published. On the 18th, they arrived in Texas and they visited the Clinic the next day. On the 20th, they report:
Wow what a day! Today Erik received his I.V. catheter and began receiving treatment. He is being infused every 4 hours with the Burzynski A10 and AS2-1 therapies for Glioblastoma through a pump that is conncected to a tube that leads directly into an artery via the catheter located on his chest. We are so grateful to all of the Doctors here who have listened to us and who have realized how important it is to Jay/Erik to start treatment right away. Yesterday, we were faced with not being able to start until Tuesday of next week, which would have given us a few days lag time and would have put our arrival time back home past THE most important day he is looking toward and that is to see his kids graduate from High School on June 4th.
By the 23rd, Erik is starting to feel the side effects of the ANP. They are finishing up in Houston early, on June 2nd:
It has been busy time for the Houston crew the past few days, learning as much as possible before the trip home today. For the most part, Jay/Erik has tolerated the treatment well with a few minor reactions which are being corrected through desensitivation doses and increases to his regular medications.
We find out what the “regular medications” are on another message board several months later:
Erik tolerated the treatment well – including huge doses of decadron (steroids) and dilantin (for seizures). We came home June 2nd.
One of the physicians at Texas Children’s Hospital said that Burzynski patients often are on huge doses of steroids. At about this time, it seems that Erik’s wife had a hard time with his new condition, and she left.
On 7 June we get an update:
We are hoping that the kids can come up from time to time and spend a week or two up here to be close to their dad. Jay/Erik is doing well with treatment and is almost at his “theraputic dose”. We will be having an MRI in Mid June so pray that we see a significant reduction in his brain tumor. Jay/Erik is having a tough time emotionally from time to time, so if you’d like to call him he would love to hear from you.
On 15 June, he still is having severe symptoms:
After a trip to the emergency room late last week and after a couple of minor seizures, we backed off on the treatment for a couple of days but are back on track – just increasing dosage a bit more slowly. Erik seems to be tolerating this method just fine. [...]
Keep your prayers coming. Next MRI is being scheduled this week for somewhere between June 20 – 27. We will know more about Erik’s response to treatment after this 1st MRI.
The first MRI suggested that the tumor size had decreased slightly, by 1%. This is unlikely to be therapeutically meaningful. Tumors usually grow exponentially at first, doubling very quickly while they are small and there are enough resources (blood, energy) to sustain it. But then tumors’ size/growth tend to level out. So just seeing a tumor no longer growing exponentially does not mean that it has stopped or that a treatment has stayed its growth. The increasing intervals between doubling times in tumors is called Gompertzian growth. You can even see some contraction from the opening of a necrotic center, where blood can no longer reach. So what the family is reporting is very likely an artifact of the tumor’s natural unimpeded evolution. He also seems to have developed a major rash, one of the side effects or antineoplastons listed on the patient informed consent form. In fact, the doctor monitoring him back home is convinced that this is a side effect of the ANP:
Our local co-operating doctor was sure the rash was caused by the antineoplastins, which convinced Erik, too.
He goes off treatment for ten days, returning to it on the 6th of July. And then, on July 7th, Erik goes into the hospital with an infection and fever. Because a hole has to be opened in the patients’ chests to receive the ANP, patients are susceptible to infection. At this point, he is taking “16 mg [of decadtron] four times a day,” and is experiencing dexamethasone psychosis:
I don’t know if any of you out there have experienced “decadron psychosis”, but we had a raging case. Suddenly, [...] the family were accused of causing all the emotional problems, and there was a suspicion that we were conspiring behind his back with the doctors and with each other. We did not understand what he was going through, etc.
Apparently, he took himself off of treatment when he heard that the tumor has slightly shrunk, a decision that may have been influenced by his mental status (?). The family, however, determines that he will stay on the Burzynski treatment.
On 13 July, we see that he’s back on treatment and in a lot of pain:
Despite a raging dilantin rash, we began treatment, and got through only doses, when Erik awoke with excruiating pains in his knees and ankles and a slight temp of 101. Dilaudid, steaming towels, Tylanol, more diaudid and finally 3 ccs of decadron IV didn’t phase it – and since, by this time, Erik ( 6’2″ and 244 pounds) was so lethargic that he could hardly communicate, much less walk – I had to call 911 and have an ambulance take us to the hospital. More Delaudid IV dulled the pain – and the temperature went to 103.
While he’s in the hospital, they catch an incipient case of pneumonia and nip it in the bud. But the family also reports:
In the middle of this, a new MRI was taken – and comparing it to the one two weeks ago, which showed essentially no new tumor growth – this was the same, with the exception of a scary spot that looks like a new tumor, growing in an area that has access to spinal fluid – and could take that course to multiply in the spinal column. Since this is still in the area of “suspicious but not confirmed”, we have not told Erik about it - only that we need to re-take the MRI for clarity because there was some movement that blurred things (which is true).
At this time, Erik is trying to stay off treatment. He wants to feel better. His family wants him to keep going.
On July 18th, during blood tests he starts to feel discomfort in his chest. A trip to the ER later reveals that he has blood clots in both lungs and he starts on a blood thinner.
By July 29 he is still not back on treatment, and he has had a talk with his family:
I talked to Erik this morning, and think I finally understand why he has decided to end the treatment. Despite what must be an actively-growing, large GBM, he was very clear about how he feels. Erik had a particularly bad time with decadron psychosis – becoming paranoid, aggressive, confrontational, etc. – (at one point, he was at 16 mg. every six hours) – and in the last weeks since his dosage was slowly dropped to the current level of 6 mg., he remembers how he was, how he treated everyone, how desperate and unhappy he felt. He has two small children – 6 and 4. He doesn’t want their last memories of him to be that decadron-driven tyrant that he often became. Right now, he’s sleeping well at night, and has the stamina to be up and around most of the day.
Erik died on August 19th, but the horror didn’t end. His mother wrote (and it seems the situation with the wife was more complicated that we thought):
Although we are comforted by the knowledge that we did everything we could to save him, we will always be convinced that, had he stayed on the Burzynski treatment, the outcome would have been different. (His fast-growing tumor had shrunk 1% after five weeks on the treatment.) More than ever, I believe that the treatment will work, if all parties are committed to it – and are willing to weather every storm. The person Erik loved never believed in the treatment, didn’t want anything to do with it, and, ultimately, convinced him that it was killing him. Now we are in the position of supporting this person, as she holds the key to Erik’s precious children and our ability to ensure their future – rich with memories of him. I would like the antineoplastin group to know about what has happened to Erik – and to send them prayers in his memory – and encourage them to stay with the treatment.
On the basis of a single test well within its margin of error, the family is convinced that the treatment was working. This is the psychological trap that snags people on unrealistic hope. What’s more abominable is that Burzynski, an unrepentant intergenerational quack, has not only drained the family’s coffers (it sure looks like the wife is left with nothing here as she needs to be supported), but his unproven, unpromising therapy, which clearly had a huge negative effect on the patient’s quality of life while not extending the duration of that life, has torn this family apart at a time when they would be best served supporting one another.
For reliable information about clinical trials, visit to clinicaltrials.gov. Please contribute to St. Jude’s Children’s Hospital, which cares for sick children even if they can’t pay. Unlike Burzynski.
Another patient being told getting worse was getting better.
7-year old Samantha T.’s story begins on 2 December 2004, when she has had headaches for a couple of days, some vomiting, and then ataxia–she was tilting to the left and unable to keep her eyes straight. Her vision was also blurry. Her family kept a website, parts of which are preserved on the Wayback Machine.
The diagnosis was a diffuse intrinsic pontine glioma, a condition that is extremely dire with a fatality rate of almost (but not quite) 100%. The early indications were that the previously unnoticed tumor had developed a bleed. It was inoperable. She was out of the hospital in a few days, and the family decided to avoid chemotherapy and radiotherapy. They rejected the grim reality of their daughter’s situation in a 9 Dec post:
Thursday, December 9, 2004
We had our first meeting with Dr. Khatib, oncologist. He informed us that the course of treatment for Samantha was based on “Quality of Life” and not on a cure. He told us about the different chemotherapy options. We have decided against radiation and chemotherapy.
While steroids had been able to control some of Samantha’s symptoms, they were unable to wean her off them for surgery in February as they hoped. Very early on in the process, this family joined an antineoplaston message group, but they did not get very active until about 16 May 2005, when they posted:
We had learned about antineoplastons early on our research; however, we soon dismissed it after getting negative feedback from doctors. However, after getting the testimonies from some of parents of former patients, it is clear that antineoplastons is a light at the end of the tunnel.
Samantha has been 29 of the last 30 days in the intensive care unit at Miami Children’s Hospital after undergoing a failed endoscopic third ventriculostomy (ETV) and a subsequent shunt to treat the hydrocephalus. Also, she underwent a tracheostomy and gastrostomy to help her breathing and eating. Just last night, she was finally moved to a room and was able to leave the bed for a ride on a wheelchair. We expect to be going home after her blood work comes back negative for bacterial infection she contracted in the last few days. We are going to Houston as soon as the MRI shows no more bleeding in the tumor.
On June 28, a family friend posted an email to the message board, which reveals that the family arrived in Houston on 5 June. She received a port in her chest for the ANP treatment on the 14th, and she started the ANP at the Clinic the next day:
Every morning Samantha, Tabitha, Adrienne and I go to the clinic to have Sammy examined by the doctors, receive the new dosage of the treatment that she gets every four hours through a portable pump and to get training so we may care for her when we are away from the clinic. Samantha is in stable condition, responding well to the treatment and keeping her spirit up. We expect to be home no later than July 10th.
The disease seems to have only progressed. On the 1st of July, Samantha was admitted to Texas Children’s Hospital having seizures. A CT scan was done and compared to an MRI from May 31. According to Samantha’s dad, the clinic commented on this:
-Necrosis present in the center of the tumor: Dr. Jurida at the Burzynski Clinic is optimistic about this observation since it indicates that the cells in the center of the tumor are dying. They will review the CT-Scan from the TCH and provide us with feedback on Tuesday.
While it’s not impossible that the tumor was breaking down in this manner, it is far, far more likely that the tumor had outgrown its blood supply. This is a pattern that we have seen among the patient testimonies, that getting worse is a sign of getting better. This particular diagnosis appears over and over going back at least two decades:
- We first noticed this pattern in the story of Amelia S.
- The family of Haley S heard this (also, see the clinic’s heartless reaction to a stroke that the child had).
- Burzynski gave the same diagnosis to Justin B’s family in 2006.
- We see a similar cyst in Leslie S.’s story (2006), and it nabbed Burzynski an extra $7,500 before she died.
- We see it AGAIN–as far back as 1994!–in Cody G.’s story.
- And finally, in the most grotesque horror show I have ever written about, Burzynski himself tells the family of Chase S. the same thing.
Despite the rosy interpretation of the Burzynski Clinic, Samantha died the very next day.
Dear Friends and Family:
It is of great sadness to inform you that our Sammy went to heaven yesterday July 2nd at approximately 8 pm. Tabitha, Adrienne and I will be flying to Miami today.
Samantha, your smile will be with us forever. We love you and miss you! God bless your beautiful soul.
A few months later, the family was still crediting Burzynski with a success even though he had absolutely failed their daughter:
Hello to Naomi and family. I am the mother of Samantha [T.] I am sure that you have heard of her. Sammy was also active and a loving 7 year old when we got the life crashing news. I also believe (that was my daughters word) that this tumor can be taken away. Sammy turned 8 on Dec.31,2004, a month after being told of this terrible tumor. Her dad I and I went on a leave of absence from our jobs for seven months. My mom also stayed with us.
The antineoplastons was working (I believe) when we had a cat scan done on Friday the day before Sammy went to heaven it showed cells dying.
It is amazing that we have seen this so many times given the tiny sample of patients that we have managed to uncover so far. Also, it explains how families can excuse the man who betrayed them (all the recent ANP patients paid for clinical trials that remain unpublished).
Note: This is a repost of an earlier case.
Wayne Merritt was diagnosed with pancreatic cancer in Sept 2009, only 11 months after his wife, Lisa Marie, had been diagnosed with breast cancer. His prognosis was grim by any standard, as Lisa Marie reports in their Caring Bridge journal on Sept 29, 2009 (unless otherwise indicated, the source of this story):
However,.. she made it very clear that this type of cancer is not curable and the chemo treatments would be for the duration of the disease. He would take a treatment for 2 weeks in a row,.. and then be off for 1 week. We asked her bluntly about pronosis with and without treatment and were told “less than 6 months without treatment” and “6 to 12 months,.. maybe as much as 15 with treatment”. It all depends on how the chemo drugs affect the growth of the tumors. There is no way to predict if the drugs would be successful. This is all weighing very heavy on us. We are totally exhausted, emotionally and physically. We just feel numb inside.
On October 2nd, they have settled on the Burzynski Clinic:
Written Oct 2, 2009 3:54pmMuch prayer,… much research,…. much discussion…. has led us in the direction of The Burzynski Clinic in Houston Texas and their method of treatment. We have found an inner peace about this program that we had been unable to feel about previous programs we’ve researched. IT’S EXPENSIVE! BUT, what price can be placed on the life of someone you love!?!?!
The family reports that they were attracted to the Clinic on the basis of its success treating Wayne’s disease:
“They claimed to have had success with Pancreatic/Liver Cancer patients! Up to 5 years of survival, we were told. Wow! 5 years sounds like an eternity when you’ve been given only 6 months!!!!”
The family drives cross country to the Burzynski Clinic in Houston, where they have their first appointment on Oct 8th:
Written Oct 8, 2009 6:41pmWe saw the doctor today. Actually, we saw three doctors today. Dr. Burzynski being one of them. He was updeat and positive about treating Wayne, although he made no promises. He admitted that pancreatic/liver is a tough one. He said the treatment would either help fairly quickly,… or it would not work at all. He will keep a check on the progress very closely for the first couple of months,.. and if he is successful we should see the tumor growth slow down, stop, or even shrink.
They had been expecting to be placed in a clinical trial, as Lisa Marie describes in an email to this site:
“He was not a part of the clinical trial. We were told he would be…. Until we got out there. Then we were given a whole different regimen.” [emphasis added]
They gave us a list of contacts. The sheet contained 4 names of pancreatic patients, 1 would not allow you to contact them, and out of the other 3, the earliest diagnosis was in March of 2009! Where are the people that have survived for 3 years, 4 years, 5 years!!!!???? Heck, even 1 year would have been nice!
In an update on Oct 15, we learn that a PET scan has found tumor activity on pancreas and the liver. They appear on the “gene-therapy” track that the clinic offers instead of the ANP track:
If you are interested…. this is the list of medications…. some of you have asked me. 1) Amino Care- developed by Dr. Burzynski 2) Brain Longevity – developed by Dr. Burzynski 3) Xeloda 4) Sodium Phenylbutyrate 5) Zolinza 6) Nexavar 7) Rapamune 8) Avastin (given through IV)Two out of the three genetic markers have come back….
HER2 was normal
VEGF was very high
EGFR we will get results tomorrow…..
Again, please…. keep us in your prayers concerning our insurance! They do NOT want to help pay for this treatment…. due to the fact that even though these meds are FDA approved,… they are NOT approved for use as being prescribed by Dr. Burzynski. All treatment so far is out of pocket,…. And our pockets are not very deep!
After they return home to Georgia, we receive an update that reveals that there the Burzynski Clinic has not given the Merritt’s an accurate understanding of what lies ahead for them and that they find themselves staring up at the foot of a mountain of debt:
Written Oct 27, 2009 7:50pm
It is with a heavy heart that I deliver the following news…..
We had an appointment with a local oncologist this morning. We went there to get blood work to fax back to the Burzynski Clinic and to set up the infusion of Avastin that he was prescribed to have every two weeks by Dr. Burzynski. They did the blood work without a problem, however when the doctor came in to talk with us, she stated that she would not be able to give Wayne the Avastin infusion…. And that no other oncologist would be able to either. They are not allowed to administer drugs not approved for a particular diagnosis, this makes them liable. She stated that even if she could administer the drug, it would be completely out-of-pocket for us. She stated that the insurance would not cover it, and even had her office check to be sure. AND on top of that,… she said even if we wanted to pay the approximately $8000 for the treatment every 2 weeks,…. She could not assume the responsibility of drug reactions that could occur, which she said were many.
From the first day we went to the Burzynski Clinic, we were pushed into one drug after another, with the costs mounting to great heights with each one added. We had really hoped that a miracle would happen,… either the genetic tests would determine that Wayne did not need to be on some of the drugs,.. or he would only have to take some of the drugs for short periods of time,… or insurance would come through for us and some of the cost would be covered. That has not happened, and the local oncologist says it will not happen. She had her people check and only one medication is approved and covered for Wayne’s diagnosis of pancreatic cancer. We also confirmed this by paying our local pharmacist a visit,.. and they said the same. So,… we now feel any statements made by the Bursynski Clinic concerning insurance payment/reimbursement was just them blowing smoke our way,… to the tune of $20,000 out of pocket plus travel and lodging costs. [emphasis added]
These unexplained, unexpected fees are TITANIC:
We’ve determined that to keep Wayne on this course of treatment would cost us between $28,000 and $30,000 per month for several months, plus travel costs to Houston every 2 weeks to receive the Avastin infusion, because we are unable to get it here. All of this is just not possible. We were told and expected… $15,000 for the first, initial visit/tests,.. and $4000 to $6000 each month in medication. We could have found a way to handle that, but that got blown out of the water!!!!! We feel we were grossly misled.
We are saddened,… crushed,…. confused,…. feeling like we have ran into a solid brick wall face first….. trying to catch our breath and figure out what our next step toward treatment might be. [emphasis added]
The family is rocked by these developments, and they disappear from radar as they recover and regroup. We hear about what has been going on in the interim in early December:
Written Dec 1, 2009 9:31am
It’s been a while since I updated the website, I know, however…. After our last blow to the gut by the Burzynski Clinic… it took us a little while to get our feet back on the ground and clear our minds enough to think clearly as to what direction we should take.
We have decided to go with The University of Texas, MD Anderson Cancer Center in Houston TX. We’ve spent days gathering all the documentation they needed to review his case. It is being reviewed now, and we are waiting to hear as to whether or not they think there is any form of treatment that will be beneficial.
Written Dec 3, 2009 2:58pm
We got the phone call from M.D. Anderson Cancer Center yesterday, and it was not what we had hoped. Because of the treatment recieved at the Burzynski Clinic, Wayne will not qualify for any First Round Clinical Trials. Since M.D. Anderson is a research hospital,… dealing exclusively in clinical trials, they stated that they would not be able to treat him, nor would any other clinic, hospital, doctor dealing in clinical trials. His only choice now, according to the medical community, is conventional chemotherapy. Wayne does not want that.
Merritt family’s grievances at this point include:
–Burzynski gave my husband standard chemotherapy medications along with the long list of other meds that were supposed to work in conjunction with each other. We were never told that two of the medications were conventional chemo medications. AND one medication that they charged us over $2300 for,.. we found out from our local pharmacy that we could have purchased it for around $170 from them.
–SO…After we stopped with [Bruzynski's] treatment….We were told that he WOULD NOT BE able to take part in any first round clinical trials, because he had taken chemo medications, no matter how small the dose, or how short the duration. WE WERE NOT TOLD THIS UP FRONT.
–We contacted several facilities, including The University of Texas, MD Anderson Cancer Clinic. None of which will see him because of the treatment he received at Burzynski Clinic.
So according to the family, the Burzynski Clinic grievously wronged them in several ways: 1) they vastly overcharged them for common medications; 2) they treated him with conventional chemotherapy (despite all the whooping and hooting by Burzynski supporters about how his treatments are “all natural”) without revealing the full implications of that chemotherapy (apparently denying them informed consent); 3) denying them informed consent, the Burzynski Clinic limited Wayne’s future treatment options; 4) by making Wayne ineligible for experimental treatment, the Burzynski Clinic has impeded research into an intractable and deadly disease.
Everybody suffers from this type of behavior, especially pancreatic cancer patients, who need research into one of the deadliest cancers.
As I think you will agree, the Merritts were completely within their right to make their dissatisfaction with clinic heard in any way they saw fit. And, god bless them, they did. They set up the website BurzynskiScam.com, where they conclude, “In our opinion, the Burzynski Clinic is selling false hope at a price no common person can afford!”
Under normal circumstances, that’s where the story would probably end. At the end of 2011, however, a PR guy named Marc Stephens, who had been hired by the Burzynski Clinic (apparently to improve his online reputation), started issuing quasi-legal threats to bloggers around the world. Stephens went so far as to threaten a teenage blogger in Wales by sending him images if his own house (the only possible interpretation of this is “we know where you live.”) It was written up in the international press:
And he didn’t just email them badly worded threats, he actually phoned them at home. According to an email sent to this site by Lisa Marie, she put him in his place:
Marc Stephens was the one who contacted me. He was very, very rude and pushy. HOWEVER,…. I told him, “I have had breast cancer and faced death, my husband has pancreatic cancer and is facing a death…… after all that…. there isn’t anything you can do or say or threaten that will scare me! And short of a court order… and jail time, I will not be removing the site.”
He did not call back… but I heard that he had been let go by BC. If they have hired another guy…. I’m sure I’ll be hearing from him as well. He will get the same response.
The case of Amelia S. is a hard one to write about, because it tipped skeptics off to a pattern in the stories that patients at the clinic were telling, that their worsening symptoms were signs of improvement. As you will see, this is a story that Burzynski’s patients have been relating for decades. It’s a long post, but it’s important that you read to the bottom.
3-year old Amelia S. lived in Reading. In about September of 2011, Amelia started displaying neurological symptoms–wobbliness and a trembling left hand (often drawn into a fist). The family brought her in to the hospital after she started falling down. On Jan 30th, 2012, she was diagnosed with a brain tumor, and on the 1st of Feb it was determined to be a large tumor on the brainstem. Surgery revealed a grade 2 diffuse astrocytoma, which the family was given to understand meant that the core of the tumor was likely grade 3. Doctors were unable to remove much of the tumor, only the 4 biopsy samples.
Amelia’s medical team was honest. The benefit offered by radiation and chemotherapy, on average, could be measured in weeks. These are bad, bad tumors. The family brought Amelia home on the 20th of February, her mobility and speech impaired, opting to spare Amelia the unpleasantness of the chemotherapy and radiotherapy. When they saw Amelia improving (we’re not told what those improvements were–whether they were reduction in tumor size or reduced swelling as she recovered from surgery, for instance), however, family understandably felt obliged to look for other options.
They found Burzynski. Immediately, the enormous price tag of his antineoplaston treatments spurred the family on to raise funds. Amelia’s father began documenting their journey to Burzynski in a couple of places, at ameliasmiracle.com and on a Facebook page of the same name. As a whole, his story is the most moving and insightful account of parental heroism that I have read since I began this project, and I strongly recommend that you read it for yourself.
By the end of February 2012, the family had decided on Burzynski. We were introduced to Amelia on February 28th in a video posted by her father:
Attached to the video was a simple plea:
Our daughter, Amelia, was diagnosed at the beginning of February with a very rare type of inoperable brain tumour. She has only a few months to live. We have a ray of hope – treatment for her is available at the Burzynski clinic in Houston, Texas. This treatment in total will cost around £200,000. We need to raise this money to allow Amelia to have the chance to live a normal life.
From the beginning, the family sought media attention to raise money for the Burzynski Clinic, as we see in a Facebook post. the earliest example of Amelia’s story appearing in the press was in the local Wokingham Times on 8 March 2012. The public campaign was launched. And by 14 March, £45,000 had been raised by the community, enough to get Amelia in the door at the Clinic (recent accounts put that initial consult at $30,000). The Wokingham Times seems to have informally adopted the family and followed their progress closely for the rest of the year. These community fundraisers appear as human interest stories and reaffirm that people are basically kind and generous and trusting. In fact, my first exposure to Burzynski and realization that something was profoundly wrong came after I did a newspaper database search for all of the patients that I could find. Of those patients I could find an outcome for, every patient who appeared in the international press, usually begging for money, with a single exception was dead.
A week before Amelia hit the papers, on the 6th of March, Eric Merola, who made an uncritical hagiography to Burzynski unironically called, Burzynski: Cancer is a Serious Business, interviewed the family about their upcoming trip to Houston for his new movie, a sequel, which comes out soon. He planned to follow Amelia’s progress in the film. On the 17th, as they planned their trip to the US, the family put up a short video for Amelia’s donors:
So, she clearly she packed everyone’s hearts into her suitcase. Such a dear.
They left on the 23th of March for America, having raised a staggering £75,000 for Burzynski. In a Wokingham Times piece, her father stated some of the opposition that the family had met:
Mr Saunders added that he was amazed at the number of people who had suggested the American treatment would be fruitless.
He said: “I was warned about this before we decided to go with the Burzynski treatment – it is like there is a vendetta out against the man.
“It is so strange, and all I keep getting are contacts from patients who have been or are being cured by the treatment, or at the very least have had positive results.”
People for whom Burzynski’s treatments fail tend not get into contact with other patients. We are witnessing what is known as survivorship bias. You can talk to a dozen survivors and have a positive impression of a treatment but fail to take into account the 10,000 failures, which would put a treatment well below the efficacy of chance remission, misdiagnosis, and unrecognized responses to traditional therapies. This is why controlled trials are so important to determine efficacy, so we can sort out the background noise of chance from real effects. It is also an important reason that dependence on patient testimonials is a red flag for quackery.
Amelia has had a hole opened in her chest where a Hickman line has been inserted, where she will receive her ANP. These frequently have complications with infection and clogging.
By the 30th, Amelia has her backpack full of antineoplastons, as we see in a video. Her family will spend the customary 3 weeks or so in the US learning to administer the ANP themselves. They are infused at high doses almost continuously.
Amelia’s dad shares his first impression of the Clinic on the facebook page:
The clinic have been fantastic. I am still amazed that people give them such a bad press. They have literally bent over backwards to get this started for us. The receptionist Irena even has a photo of Amelia behind her desk, she is so lovely!
Well there is a reason, of course. It’s because they apparently tell patients that they can tell brain tumors are shrinking by looking at their urine:
Mr Saunders said: “Every day is a milestone and the clinic is being extremely thorough in its tests – Amelia has regular blood tests and these are all closely monitored to check for signs of all sorts of things.
“Interestingly, they can actually see the early signs of the tumour breaking down by how her body excretes it in her blood and urine. This might be the only time in my life I get excited by seeing this kind of information!
I’m not sure what this is supposed to mean, and before Amelia’s story I would not have even noticed this. I can see why a parent clinging to hope would sieze onto any augury of healing. Remember, this family has not had good news about Amelia since her diagnosis. Little steps, literally, mean the world to them. I contacted research oncologist David Gorski, who studies and treats breast cancer, about this claim, and he replied:
“Oncologists don’t monitor anything in the urine for tumor breakdown, at least not for that tumor. There is such a thing called tumor lysis syndrome, but that’s usually only seen in leukemias and lymphomas as a result of induction chemotherapy that kills a lot of cancer cells really fast, releasing potassium, and a number of other byproducts. However, as I said, you don’t generally see this in solid tumors (mainly because none of them respond nearly as dramatically to chemotherapy as hematological malignancies). It’s also a complication to be managed, because its most frequent result is renal failure. It’s possible that he’s referring to GFAP, which is a biomarker for glioma under study, but I don’t think it’s really been validated as a measurement of response to therapy.”
There are apparently no biomarkers for glioma that appear in urine. Amelia had chronically low potassium at this point in her treatment.
We don’t see a lot of what is going on at the clinic on facebook, where most of the story is told record, but we get a clue on Amelia’s other website:
10th April 2012
I realised I hadn’t updated the news section here for a few weeks, this is largely because we update our Facebook page daily and much of our time has been taken up going to and from the clinic. Every day has been a bit of a rollercoaster here. Amelia has been on antineoplaston treatment for a week and a half and at the end of last week we hit a bit of a wall with the treatment dosage. Amelia got pretty sick so we had to back down on the dose a little. Yesterday she started getting really bad headaches so we have now also put her on a low dose steroid as well. Other than this, she is doing well and responding well to treatment. We think there are some very slight improvements in her coordination of her left hand side. We are continuing the treatment, and the aim is now to increase the dosage more slowly to see how she responds. All in all we are doing well and looking forward to coming home soon!
So, she’s been up and down. The steroids are a recurring feature of treatment and can very quickly reduce inflammation in a way that leads to improvements of the type that the family is reporting. You see it a lot on this website. It’s hard not to think of John D., who experienced worsening symptoms while under treatment (and on steroids), which was met with joy on the part of the staff:
I want to mention that the IV nurse told mom today that she’s been there for 10 years & has seen this before & many times, the more severe symptoms that are seen as a result of the therapy is really a good sign that it’s working better. I know this nurse & she is very honest & helpful. She also runs the class they run every week for new patients.
On April 19th we hear that the family is preparing to return home, and on the Wokingham Times page where it is announced, we see that damned picture again, patients literally at death’s door, posing in front of the Burzynski Clinic. We get the update that they have arrived back in England on the 22nd. Amelia’s dad talks about the fundraising (truly amazing acts of generosity by the whole community) and how grateful he is for the immense support that the family has received. (Amelia gives her own thank you’s in an adorable little video a few days later.) He speculates on the road ahead:
I have come home from Houston with a strange kind of feeling. Perhaps a little apprehension, a bit of fear, a dose of happiness and a shot of hope. We still feel that every day is a roller coaster. We may be sitting on a ticking time bomb, and it may still be that any day we might lose Amelia. Every day truly is so precious, and it is a joy to watch her and her little sister back together again, albeit in a different way, a more careful one, where we have to watch them all the time.
The next day, it sounds like Amelia is having the unquenchable thirst that comes with ANP:
Amelia has been OK today, she was a bit sick earlier but we think this was because she drank too much too quickly – she was fine shortly afterwards. We’ve been getting used to life again at home and putting everything in place we need to.
And we hear that she is due for her first post-treatment MRI:
As far as the MRI goes, I just want to make a point that we aren’t expecting a lot to have happened with this next scan. As part of the medical trial we are required to get a scan done every 4 – 5 weeks – and these things take time to show any change. It is very likely the tumour may be the same or have grown slightly. This is fine and we expect this, and clearly if it has shrunk then great – but we aren’t expecting it to have done.
Tumors on which chemotherapy is working should probably not be growing at all. It’s the definition of “working.”
Today has been a busy day. Unfortunately Amelia was pretty sick this morning – those of you who have been following our journey will know that we are trying to increase Amelia’s dose of drugs and it sometimes has side effects, this seeming to be the most common. She was fine afterwards and has been eating for the rest of the day.
We had an appointment at the hospital at lunchtime and ended up spending most of the afternoon there so we could get everything sorted. The doctors here are being very cooperative – but I must emphasise that they are recommending different treatment (chemo) and we have consistently turned this down. We have not found a single person with a DIPG tumour that has had any effect with chemo – so continue to find it strange that this is offered. Our plan is to continue the antineoplaston treatment for as long as required. We realise this is being frowned upon by the doctors here – but ultimately we are trying the only thing we found that had credible results.
Credible results would have been publication and replication of his trials. Burzynski can’t seem to complete his trials, much less publish them (which is odd given that he has the test agent already developed and the tumors he is working have outcomes comparatively rapidly). If trial completion were a batting average, he’d be at .015 and his trial publication average would be .000.
By May 4, Amelia is a celebrity. They have raised £160,000 (!) and she is meeting and hanging out with celebrities. And the paper has clearly been reading Amelia’s dad’s updates. Also, her dad’s website announces:
Well we have now been back from Houston for a few weeks – and Amelia has continued to slowly improve with both her walking and speech getting better. The Burzynski clinic were brilliant – we were made to feel so welcome and Amelia really made an impression on everybody there!
We had an MRI scan on Monday that revealed her tumour has stopped growing. Considering she has had no treatment other than the antineoplaston therapy from the Burzynski clinic, we are really pleased (and impressed) that the treatment seems to be working so quickly. We are now continuing the treatment and increasing her dose such that we try to get her to the ‘target’ dose for her weight.
1. Amelia has been on treatment for less than 4 weeks.
2. She is not on full dose yet, and has some way to go to get there. This is a slow progress, perhaps taking another month or so to achieve this (or more).
3. She has a low grade tumour. Any response will be slow. In other kids where the treatment has worked it has taken many months to show response.
4. She is still on steroids.
5. Her previous scan showed a 13% growth in 7 weeks.
So, having now had several opinions of the scans, I can confirm that Amelia’s tumour has STOPPED GROWING. This is amazing news and we are over the moon that this is the case. For this tumour type, in this short time, with a tumour of the size of Amelia’s, this is an incredibly good result. This is an INCREDIBLY hard tumour to do anything with, one of the hardest to treat and normally very lethal. In most circumstances Amelia would no longer be here (in February there was no way we thought we’d get to May with her) so to have the thing stable is fantastic news.
A few important points. It’s a low grade (slow growing) tumor. This does not seem to have been a PET scan, which would give a sense how of active the tumor was–to see if it had in fact “stopped.” And initial responses to chemotherapy (and ANP is chemotherapy by every definition) correlate poorly to outcomes, which is, of course, the final goal that everyone involved is keenly interested in. Of course, the Clinic doesn’t convey that information:
I also had a good chat with our doctor in Houston earlier. Again all sounding very positive, and we have again increased Amelia’s dose tonight [...] The clinic sound very positive that Amelia’s tumour stopped growing so quickly. Let’s just hope we have more positive news on the next scan in June.
On 12 May, we get an update about Amelia’s progress:
Amelia was on top form today, she was pretty tired after the wedding but perked up and during doses, when we unplugged her from her backpack, she was really bubbly. Later in the afternoon she was doing some proper walking – unassisted. I think we have now realised that a lot of the walking problem now is just her confidence. She was walking almost normally, and certainly the same or better than she was before her operation. Fantastic.
So, they are at point zero, which considering where they have been is wonderful from the family’s perspective, but it doesn’t tell us that the ANP is working of if she has just recovered from surgery to her brain stem and is now on steroids. And this may be important, as dad mentions on the 20th:
She really has improved. We’ve both noticed significant improvements in her speech, mainly in the quality of her pronunciations and also the speed and which she speaks. Slow speech is a classic symptom of her tumour location, so any improvement is a good sign here. This might be the steroids causing this improvement so we have to be careful, but we have a lot of fingers crossed we’ll be taking her off the steroids within the next few weeks if we can get her second bag to target dose. We’ll see.
Amelia has been a bit groggy, fairly lethargic and pretty reluctant to do a lot. [...] Because of the lethargy, the doctor in the US has recommended increasing her steroid dose very slightly. We’ll see if this improves things – if it does then this is a good sign. It does all tie in with us increasing her dose, which is now at maximum on her larger bag. No wonder.
Also on the 21rd, just over a year ago, the fundraiser reaches its goal of £200,000, and the tally continues to climb. In the intervening time, however, we hear that Amelia has had some complications with the Hickman line, which has been replaced because of a tear:
She is doing well otherwise, and we’ll be resuming her treatment tonight. She is now walking by herself, her coordination and balance have all improved and her speech is much better. It looks like the treatment is definitely helping her.
In early June, dad is rattled by the deaths of patients Billie B. and Supatra A., who had the same tumor as Amelia, and for a few days he rails against skeptics. Apparently some have been contacting him and criticizing him. This is wrong, in my opinion. Cancer patients have enough on their plate.
On the 21st, we hear that the tumor remains stable:
Firstly we are waiting on a further interpretation from Dr Burzynski, but as we suspected from our own view of the scans this morning, Amelia’s tumour remains stable. In other words, there is no change since the last scan.
The family accepts this as a sign that they have stayed the brain tumor:
We are 100% sure that without antineoplastons, Amelia would either be in a hospice by now or dead. She has a grade 2 tumour, on scans it appears as a grade 3, and it is very large and in a very dangerous part of the brain. Even a few mm of growth would cause a significant impact on her quality of life at this size. We are all walking on a knife edge. Dr Burzynski’s treatment is undoubtedly keeping her alive. I actually want to wave this in the face of all the skeptics we came across along our journey.
It’s worth noting that the tumor hasn’t shrunk. Small victories–including just not dying–are huge when your child has one of these tumors.
Amelia has her 4th birthday on the 22nd of June, and it is celebrated in the papers.
Again, we see that the steroid dose is being increased on June 25th to control the symptoms of the disease:
We have been advised by the clinic to increase her steroid intake back to how it was last week to see if we see an improvement in her. We will then try in a couple of weeks time to reduce it again but at a slower rate, reducing it by 0.25mg instead of 0.5mg per day. The steroid intake is a tricky issue as they are essential and help reduce the symptoms of this awful disease (headaches, tiredness), however long term steroid use is not good and cause side effects such as weight gain, muscle problems.
We still haven’t seen anything that looks like clear evidence of improvement past diagnosis; it sounds like the symptoms return when the steroids are tapered. She seems to be doing pretty well on this dose of steroids, going to school. (Her last day of nursery school is 11 July.)
Well – we have had a pretty good weekend. I had a truly amazing conversation last night. Purely by chance I’ve been contacted by the mother of another little girl, who is almost the same age as Amelia, who is receiving the same treatment (for longer), with the same tumour (DIPG) and her tumour just shrunk. By 36%. We are so, so pleased. There is so much hope in our hearts now.
I’ll just briefly mention how frustrated we still are to read so much crap on the internet about Dr Burzynski. I feel like we are ‘insiders’, in a way, and know how the whole thing works now. These doubters clearly don’t. The lady I spoke to last night was told her daughter would die. When she went to Burzynski, her doctor shut her off. Refused to speak. Thank God she chose to follow her heart, and not that doctors advice. She might just have saved her daughters life. There is no doubt this works, and we want it in every hospital in the world. We’ll keep spreading the word until it is.
By August the tumor has not shrunk, but Amelia has been coping very well. A few weeks earlier she had a wonderful day at the zoo. She’s still a little wobbly on her feet and in the pictures her family put on the Facebook page, you can tell that her face is not symmetrical, but by God she’s enjoying her life, which is an immense thing in itself. On the 6th however, she gets pale and sick; when her blood work is done, they find that her potassium and magnesium are way down, though they stabilize her.
On August 8, we hear:
One of the many things I have said throughout this year is that I hope that maybe, one day, I can learn that another child has had success with this treatment because of the inspiration they gained from Amelia. I know of one little girl, Chey, who is waiting to go to the clinic right now. But due to some complications with the FDA and the clinic, there are some delays – but we are all hoping she will get there very soon. We felt so welcomed by the Burzynski clinic and everything we saw there made us puzzled why so many people don’t believe in it.
We just found out exactly what happened. According to an SEC filing:
In a letter dated June 25, 2012, the [Burzynski] informed the FDA of a serious adverse event which may have been related to the administration of Antineoplastons. On July 30, 2012, the FDA placed a partial clinical hold for enrollment of new pediatric patients under single patient protocols or in any of the active Phase II or Phase III studies under IND 43,742. The FDA imposed this partial clinical hold because, according to the FDA, insufficient information had been submitted by the Company to allow the FDA to determine whether the potential patient benefit justifies the potential risks of treatment use, and that the potential risks are not unreasonable in the context of the disease or condition to be treated.
According to the mother of patient Alynn H., her understanding was that a child had died (link is password protected). We have not heard anything else, only that the ANP trials, almost a year later, have not started up again and that the partial hold remains.
On August 13, Amelia’s dad posts a video about Amelia’s life since diagnosis. This write up an unusually long post for this blog, and I haven’t done justice to the support the family has received from their community or the sheer number of people who pitched in to help the family, and this video gives a sense of that:
On the fifteenth, we hear that the family is understandably anxious for the tumor to shrink:
Incidentally, we are well aware that a stable tumour is good. Mondays scan was one that we went into thinking ‘if it is stable then great’. I’ve had a few people come up to me and ask “is the tumour shrinking?”. Now I know people mean well – but it is a little like me walking up to somebody and saying “have you won the lottery yet?”. In other words, frustrating. I smile, say no, it will take time, and move the conversation on.
So far, the tumor’s behavior has been utterly unrelated to the dose of the antineoplaston chemotherapy. On Aug 25, we hear that Amelia is tired on treatment and that she has had a progression of symptoms:
We are still looking to increase her dose slightly as she has gained a little weight since Houston so she should be able to tolerate an increased dose (or at least we hope so). We will probably have to increase her steroids in line with this, but we have been considering this anyway as she seems to have become a lot more wobbly lately. We know from the MRI that the tumour hasn’t grown so an increase in her steroids should help this.
Now, I’m not sure how this was verified. The definition of a “stable” tumor can actually accommodate some growth, so, we can’t know exactly what is happening. And we hear from the family a few days later that they have come to a hard realization:
On the 27th, we hear:
Firstly, Amelia hasn’t quite been herself unfortunately. She has been very reluctant to walk, a lot more tired, slow and pretty lethargic. She was sick on Saturday night also. We are reasonably confident we have probably gone too far with the steroid reduction so we have actually increased these slightly again today. We decided we would rather have a happy and more alert Amelia than one who doesn’t want to do too much – so we made this decision today in coordination with the Burzynski clinic. We’ll see how she does. There is a small chance it is the tumour growing, but much more likely given the scans we have that this is due to swelling of the tumour caused by the treatment. Time will tell. [...]
The symptoms we are seeing right now are a direct result of the tumour, hopefully due to it swelling, and the steroids will fix this. They are also what we would see if it has grown.
It really, really looks that her wellness is linked directly to how much steroid she is receiving. And here’s another example of something that is…desperately, desperately wrong at the Clinic. The patient is being told that the tumor is swelling because of the treatment. How is it that only at the Burzynski Clinic that getting worse is indistinguishable from getting better? Second point: this is a tumor on the brainstem. If a possible side effect were swelling of the thing pressing against the brainstem, you’d expect that to be on the informed consent form, right? The type of thing that would be among the “serious side effects,” right? It’s not, at least not in a version of the consent form used after Amelia had started ANP:
(Burzynski’s supporters who have been saying that the treatment has no long-term side effects would do well to look at that first paragraph. The paperwork that every patient signs says it can have exactly that.)
On September 5th, we see a candid moment on the facebook page. The parents are committed to seeing this therapy through, but the father has that lingering awareness that this nothing the tumor has not shrunk:
Whether we have returned to a feeling of optimism or not remains to be seen. I still feel uneasy about the fact that we are so far on without the tumour shrinking. It is frustrating, because we have worked SO hard with the treatment – our entire lives are ruled by it and it is almost a full time job sorting it all out – we just share it between us and make it happen. We just know to be patient, and we 100% know it can work.
At this time, Amelia was returning to school (she had already been going to nursery school on treatment). And the way it appeared in the press, and certainly how I and other skeptics read it, it was being promoted as, “See? This treatment is working enough to let this little girl go back,” a human interest story (The Mirror’s coverage was profoundly disgraceful–suggesting UK doctors “refused to treat” Amelia, whereas when you look above you see that in fact: “The doctors here are being very cooperative – but I must emphasise that they are recommending different treatment (chemo) and we have consistently turned this down”), and by god it was good to hear that Amelia was having a great time, but there’s a lot more going on than is contained in the articles. On the 5th we see how much support was needed to get Amelia in. This was not the return of a healed child that everyone took away from the coverage:
“There has been a LOT of organising around this, far more than getting a healthy child to school. We’ve arranged our nanny, we’ve had to work around the school timetable, we’ve had meetings with the school and the teachers and the hospital nurses and made everything happen. The school have been absolutely fantastic every step of the way – we literally cannot fault them.”
On the 8th, we see on the Facebook page:
“On Monday we have a physiotherapist coming to look at her to see if she can get her walking again. I tried a little walking with her today and she is really, really trying. You can see she struggles, like her brain doesn’t know how to do it but the conscious Amelia that we see and know does. It’s a bit like trying to write with the wrong hand – you know what to do but you can’t quite make your hand write as well as the other. She tries to walk, but can’t quite make it all fit.”
This is not a child improving.
September 10, on they were visited by Eric Merola for his utterly uncritical documentary about Burzynski. More on that in a moment.
On the morning of the 15th, Amelia woke up crying with a pain in her head. She went off treatment for a day or so and got better, not trembling, perhaps speaking a bit better. One wonders if she is not experiencing relief from the hypernatremia that can appear alongside such massive sodium doses and can have such side effects.
Amelia has a great couple of days in late September (and she really takes to her school!), and her dad talks about how the awful waiting game goes in between MRIs, which I have learned is how time is measured by cancer patients:
I’ve said this many times before, but the really frustrating thing for me is not having anything really tangible that tells you this is working, until we get the scan image in front of us. This means an 8 week wait between scans when you really have no idea what is going on, and if she gets worse like she did a few weeks back then I think you naturally assume the worst. Then she gets better, and you relax a little!
The October MRI shows no change. But later that month, the family is trying to come to grips with what life will mean in the likelihood that Amelia is not with them. It’s a beautiful post, and I hope you read it. It’s immensely sad and healthy and you can’t help but feel the full force of their grief and fear. This family is mentally preparing themselves for a horrible future, and this makes what happened next absolutely inexcusable by any measure.
By November 19th, Amelia’s right hand is immobilized, a clear progression, and the family gets the results of a recent scan:
What I don’t want to do is get ours, and everybody else’s hopes up about things. I could not bear thinking that this is working and then to be told it isn’t. (emphasis added)
What I will elude to is that the Burzynski clinic feel that there is a cyst forming inside Amelia’s tumour, very slowly. This does seem apparent on the scan images but we want to make sure this has grown over the longer timeframe. A cyst will form where there is cell breakdown, so clearly is a good thing from a ‘killing the tumour’ viewpoint, but possibly bad in that you then have fluid in a very difficult place to get to. We’ll address that little hurdle if we get to it being a problem in the first place.
This sounds exciting (it is), but we are really trying to be careful about getting too much so. Amelia has got worse, although she has had some improvement over the weeks before her MRI. This could be due to a number of factors and we know the tumour has not grown.
Another point with this is that the tumour isn’t shrinking, but if a cyst is forming then it might be some time before the tumour does shrink. We’ve always said that due to Amelia’s tumour being very slow growing, we have more time on our hands more than most kids who get this.
When this news was released on the family’s Facebook page, followed by rapturous confirmation the next day, it was brought the the attention of Orac at Respectful Insolence, who gave an honest medical opinion:
It pains me greatly to do this, because, no matter how I write this, it will be perceived as trying to take away the hope for Amelia’s survival that the Saunders family holds. Such is not my intent, by any stretch of the imagination. However, these “cysts” almost certainly represent areas of ischemia (low blood flow) leading to tissue death as the tumor outgrows its blood supply. This is a phenomenon commonly seen in advanced malignancy. I know this because tumor angiogenesis ia one of my areas of research interest. [...]
Sadly, then, seeing “cysts” growing in Amelia’s tumor most likely says nothing one way or the other about whether or not it’s responding to Burzynski’s antineoplastons. That’s assuming that Burzynski’s interpretation of the scans is even correct, which I wouldn’t bet money on. Most likely, these “cysts” indicate that there is no therapeutic effect. I take no pleasure in saying this, but most likely this is true.
We know that some people doubt what we are doing. We understand that it is in human nature to question, and many people will not just take something on faith alone. But, ultimately, this is our choice. And that choice seems to be paying off.
Yesterday I sent a CD with the latest MRI scans on to our local oncologist and I’ll be waiting for their opinion. We’ll consider this, and then continue until the next scan and see if the cystic formation that we have been shown grows in some way. I don’t want anyone to think we just take things at face value and accept them – we consider what we see, what we are told, and get as many opinions as we can. We can see with our own eyes though that something has changed with the tumour and we hope this continues. Amelia’s tumour hasn’t enhanced or progressed, so we know it is unlikely to be anything other than cysts, but we will get that second opinion for sure.
Amelia had a magical week. She won a community award, the “Child of Courage” award, and was literally the star of a Nativity play with her friends. The reality of Amelia’s situation soon came upon the family, however. On 2 December:
The truth is, Amelia isn’t getting any better neurologically. We live with her every day and we see it. She is very slowly deteriorating and I think we would be putting our own heads in the sand if we didn’t accept this. On one hand we have the Burzynski clinic who believe the tumour is beginning to die. We are getting opinions here about this theory and we’ll very likely need another scan of a different type in early January to back this up. Everything is based on opinions – and nobody agrees, which makes it all very hard on us.
And the final assessment from the Great Ormond Street Hospital:
We had our meeting at Great Ormond Street yesterday and, sadly, they just don’t have anything for us. We kind of knew this before we went – but wondered if they might have a trial that we could take part in. Unfortunately they don’t.
They felt that Amelia is in the latter stages of the disease, and that what is called ‘progression’ has already started. This means her tumour is growing, the cancer is spreading and we don’t have a huge amount of time left. Again we had already guessed this was happening but it was good in a way to have another opinion of this.
Were it just a one-off bad interpretation of an MRI on the part of the Burzynski Clinic, we might have been able to write this off as a simple mistake. But it’s not. Not by a long shot.
- The family of Haley S heard this (also, see the clinic’s heartless reaction to a stroke that the child had)
- Burzynski gave the same diagnosis to Justin B’s family in 2006.
- We see a similar cyst in Leslie S.’s story (2006), and it nabbed Burzynski an extra $7,500 before she died.
- We see exactly the same thing in the case of Samantha T. in 2005.
- We see it AGAIN–as far back as 1994!–in Cody G.’s story.
- And finally, in the most grotesque horror show I have ever written about, Burzynski himself tells the family of Chase S. the same thing.
Had Burzynski not used this line on the family who had given him by far the most publicity of any other in years, this recurring theme might have slipped by unnoticed. But it’s clear that this is not just a coincidence, it’s an M.O. predicated on false hope that strings parents and patients along. And it’s been going on for decades! And it leaves patients utterly crushed and confused. The few skeptics who have been working these stories in their spare time have found case after case of patients thinking that getting worse is getting better (a partial, growing list can be found in this post). Consider that the cases written up at this website represent 1/10th of the total cases we’ve been able to find and will be bringing to you, that we have only found a small fraction of cases, mostly from the most recent years, and that this guy has been operating for over 35 years! My god! Imagine what that means!
In light of this, when Eric Merola, in his new movie, says in a series of title cards:
Two months after this interview, Amelia’s tumor began to swell and fill with fluid.
There was confusion and disagreement among between their local radiologists and the radiologists in Houston, [sic] about why this was happening–
So her parents decided to discontinue antineoplaston therapy.
[Then he cuts to a picture of Amelia's obituary and says,]
“Amelia passed away with her parents by her side on January 6, 2013.”
…it is fundamentally dishonest. There was no confusion. There was the right diagnosis and Burzynski’s diagnosis, a story that’s been spun for decades to desperate parents, and it’s a goddamned disgrace that Merola suggests that the parents’ evidence-based decision could have been related in any way to the outcome.
Instead of the usual plea for a donation to St. Jude Children’s Research Hospital, which researches children’s tumors and provides care for free, we’d like to ask you to make a donation to Naomi House, the children’s hospice center that cared for Amelia’s family in the last days and which seems to be the family’s preferred charity.
If you want to take action, protect the vulnerable, and put reliable information in front of patients who might be looking into this Clinic, the Skeptics for the Protection of Cancer Patients (facebook page here) have put up guidelines about how to boost good information into Burzynski’s search results.
Note: This is a repost of an earlier patient case.
Luna P. was 18 months old when her parents noticed that she was quite unwell in early August 2008. They took her to the hospital and over the course of the next few days she was diagnosed with an ependymoma. Eleven hours of emergency surgery took a hard toll on Luna and left her very weak on her left side and unable to swallow (she was fed through a tube after that). Conventional therapy was very hard on Luna, but in December 2008, the tumor had shrunk enough that the doctor could attempt surgery, and they went through a course of dangerous surgeries over the next few months, which Luna tolerated fairly well, according to her parents’ website. But the tumor kept growing, and this made them desperate.
They met with Anthony Michalski, their consultant in pediatric oncology at the Great Ormand Street Hospital. This interaction and the collaboration of the pediatric oncology department at GOSH was partially documented in the BBC 2 film, A Tough Line. When they review scans following her string of surgeries, the entire team–an entire room of specialists–agrees that the tumor, which is now compressing her brainstem is recurring and that the current treatment is not working. Michalski wants Luna to go on etopocide to prolong her life; a cure, while possible, would likely not be the ultimate outcome. They agree to go on the meds, but when no physician in the UK can offer them a cure, they find Burzynski on the Internet.
In so many of these cases, we hear the parents of children with cancer describe their gamble as an all or nothing game. Either physicians save their child or fail their child. There is no in between, and their desperation is understandable. However, there are halfway points, and while they will feel unacceptable to the parents at the time, there is such a thing as palliative care, which reduces the suffering of everyone involved, especially the patient. It is at this point of abject misery and desperation that Burzynski springs with what he calls “hope.”
In my years working on sketchy claims, I have come to realize that there are two things that anyone can sell, and people will buy it eagerly. The first is flattery. The second is hope. And there is no limit on the price you can exact from desperate parents who are looking for the latter.
And he always tells them exactly what they want to hear. According to Luna’s website:
There is no more treatment that can be done in the UK. We went home and cried for several days then we looked at Luna and thought hang on she’s not crying we cannot give up she has fought so long and hard and not a day passes that through all of this she hasn’t smiled. So we searched and searched asked questions and somehow found contact with another family who’s daughter had exactly the same disease and discovered there was something out there.
A treatment call Antineoplaston therapy which has had amazing results in the US. We have to try this.
The cost to meet the Doctor for assessment is £20,000
If Luna is accepted the treatment then costs £50,000 a year.
This is absurd. There are limited cases where a patient might expect to pay to be in a clinical trial, but the types of trials that Burzynski is doing certainly don’t qualify. Most pharmaceutical companies, when they are developing a drug, offer patients care and treatment free of charge because the patients are volunteering to put their bodies on the line. Burzynski does not technically charge for the antineoplastons, but he charges for everything else that could possibly be related to ANP–visits, phone calls, consults, etc. This does not resemble the business model of someone who expects to eventually make a return on an approved drug, and remember, if he is genuinely going to cure cancer, he is going to be able to charge whatever he likes. The fact that innumerable other startups get their drugs to market without B’s revenue stream is deeply, deeply suspicious.
In late May, and early June, Luna’s story was in the media, in The Sun, in the Watford Observer, and the Sunday Express as the family was actively raising money for Burzynski.
At the end of July, 2011, the family arrived in the United States searching for a cure. By the end of August, back in the UK, they knew that they would be in Houston by September 12.
The traditional treatment seems to be having an effect, keeping the disease from growing. It is an “effective agent,” perhaps the best possible outcome at this point. Nonetheless, the family presses ahead fundraising for Burzynski. They raised £100,000 for Burzynski in a mere 8 weeks.
They report to their consultant in the UK after their trip that Burzynski told them that he has 30% of patients have a good reaction, using the metric of “stable disease.” This is criteria is problematic, though. According to a site review at Burzynski’s clinic:
“Moving from protocols to results, I am surprised by Dr. Burzynski’s statement that stable disease is a positive outcome. That runs contrary to established criteria for trial design. In the context of phase II trials, which are short-term studies, stable disease is not reported as a positive outcome.”
After this consult in the UK, Luna’s doctor remarks,
“But what you hear quite a lot is, ‘how do you know that he or she is going to be ‘the one [who has a successful 'miracle' treatment]? … And the phrase that makes my heart sink is ‘We’d never forgive ourselves if…’. Actually, it’s not about them forgiving themselves. It’s about them doing the best for their child. And the focus should be what’s happening for the individual child rather than parental emotions. It’s tough because it’s so understandable [...] that you are going to do everything in your power to hunt down the last chance of cure, but where that becomes a futile exercise is a difficult call, a difficult line.”
This is the point that an ethical, concerned doctor takes away from a professional lifetime of caring for children, something that Burznyski seems to have never considered. (It apparently doesn’t fit his business model.)
On October 10th, the family posts a photo of themselves in front of the Burzynski Clinic. As best I can tell, a lot of patients take the same photo. It’s like being forced to watch a horror movie again and again.
Only one week later, however, on October 17, the message goes out:
Little Luna is currently in hospital and not too well. Our thoughts are with all of you xxxxx
So quickly does Luna’s condition deteriorate it’s difficult not to think about how quickly Rachel M. nosedived this fall after starting ANP and how groggy she was. According to an interview with Luna’s mother in the Watford Observer, the treatment put Luna in the hospital:
However, Mrs Petagine said the treatment at The Burzynski Clinic was actually killing her daughter.
She added: “The treatment was – what was happening – was actually killing Luna because it put this pressure on her brain stem.”
Once Luna was on the Burzynski treatment, her sodium level went insanely high. Her REAL physician’s reaction to this news, which was captured on film by the BBC, tells the whole story about what a horror antineoplastons are:
This is much the same deadly side effect that nearly put Adam M. into a coma. Antineoplastons are toxic chemotherapy. A patient informed consent form for one of the ANP trials (dated from last year), included the following as a partial list of ANP’s side effects:
- severe or life-threatening increased sodium concentration in blood;
- risk of death;
- difficulty arousing;
- severe or life-threatening low potassium concentration in the blood;
- decreased levels of consciousness;
- upset stomach;
- low platelet numbers requiring transfusions;
- severe fatigue interfering with activities of daily living;
- fever greater than 104F;
- frequent urination at a rate of urination at least once every hour of more often or a requirement for a catheter;
- liver toxicity;
- irregular heartbeat;
- decreased white blood cell count;
- slurred speech.
This goes on for 3 pages. The quantities of water that patients need to drink (I’ve seen up to 11 liters a day) is obscene.
At a checkup at GOSH, that Luna is in a sorry state is immediately apparent. She is chugging water incessantly throughout the clip and slobbering uncontrollably. No matter what a Burzynski supporter says, this is a potentially toxic treatment and its terrible effects are written all over this little girl. (I should note that this disturbing film is really important to understand the horrible choices that parents are forced to make. I recommend it, lest you think anyone can take writing about these issues glibly. You can’t.)
By February of this year, the ANP has proved to have been a resounding failure. Burzynski, just like with Adam M., tries to get them on his ridiculous “gene-targeted” therapy; it’s basically a Chemo Colatta, apparently mixing drugs that have never been tested together, often applied to cancers that they have not been tested on, but don’t take my word for it:
Luna and her family have been talking to Doctors in the US at the Clinic, who have agreed it is unsafe to put her back on the Anteneoplaston Therapy because her tumour is so close to her brain stem. They have however suggested they put her on a treatment called Gene Targeted Therapy. This is where they take a sample of the tumour and in a lab test it’s genetics and test what drugs will work against it. Then then will give those drugs to Luna. The family are very excited because they knew the Anteneoplaston could eventually be too much for Luna, with possible fatal consequences and of course they are desperate to cure her. The Gene Targeted Therapy is having amazing results in adults so we pray it will do the same for Luna. We now need to continue to fund raise so the family can start the treatment and carry on with it. Any fund raising ideas please email us via the website. Thank you x
Charging $30,000 to start up (again, according to Adam M’s wife) and $20,000/month thereafter for off-label drugs selected via the genetic equivalent of palm reading, the Burzynski boys are shameless. For an illustration of a patient who is on this course of treatment, see the case of Denise D.
From this point on, it is uncertain to me what their relationship with Burzynski is. They seem to have continued fundraising but were working with doctors in Boston.
It is with a heavy heart that we write this update. Despite battling against all the odds over the last 3 years it saddens us to tell you Luna is losing her battle. Lucy and the family took her back to GOSH on Friday after she appeared to be deteriorating in front of their eyes. A CT scan gave the devastating news that not only had the tumour grown but that it now appears inoperable and beyond treatment. The family have been told to take Luna home and cherish the time they have left with her. The picture here shows Luna, her siblings and cousins enjoying a family day for their Popsies birthday. The family continue to show unprecedented strength and dignity throughout and we have nothing but admiration for them – especially Luna x
They carried their daughter very, very far. Her father ran a damned marathon for her. These parents did everything that their instincts told them to do.
On August 8, 2012, the sad, sad news came that Luna had died:
On behalf of Lucy and Mario It is with great sadness that we share with you that our Beautiful Luna fell asleep very peacefully with mummy and papa holding her tight to become a shinning star, and we thank her for all the wonderful memories she leaves with us, and thank you from the bottom of our hearts for all your support and love you have shown us in everything that you have done.
On the 16th, the family–and the whole community that sprang up around her—said farewell to their daughter.
Her family has continued to memorialize their daughter, and I do hope that they continue to press Parliament for more funds for brain cancer research.
After reading so many stories of so many patients and their families, you learn a vast empathy. Every time you start a new patient story, if you are not carried along by the power of the emotions attached to every decision that these families make, something is wrong with you. This is a story of a magnificent woman who died too soon. She she was young, only 50, but her children were almost all grown and as you read her story, you have the sense of a major character being yanked unceremoniously from an otherwise complete narrative.
Maria V.‘s daughter kept a blog of their experiences, starting with their trip to Burzynski Clinic. Maria had stage 4 uterine leiomyosarcoma, a very rare cancer which had metastasized to her lung, liver and bones.
Maria and her daughter flew into Houston on 13 Nov 2011. On the 14th they are at the Clinic, and it’s interesting to get a number of close-ups of the photos adorning the walls of the clinic. They are completely self-serving. One is of Albert Einstein, and features the quote: “Great spirits have always encountered opposition from mediocre minds.” Another one is of Louis Pasteur and it reads, “Nobody knew his name when he got started either.” This difference is that both Einstein and Pasteur, of course, published their results. Pasteur was a master experimentalist. Einstein made extraordinary claims who won over the scientific community when others were able to observe what he predicted. Burzynski, of course, is neither. Most doctors will not work with him, and despite his 60+ clinical trials, he has only ever finished one (a completion batting average of .015). He’s published none of them. When you consider how many patients have paid to be included in those apparently unpublishable trials, you realize the magnitude of what is happening in that place.
Right away, we get a sense of what is going on, as the family is in the waiting room, where they met a patient from Georgia with bladder cancer:
She sat down next to my Mom and in true [V.] fashion my Mom looked over at her and asked, “What’s your problem?” she said it in a sweet way of course. The lady proceeded to tell us about her hardships and was soon called into the Dr.’s Financial Dept. When the woman came out, my mom noticed right away that she was upset, the woman’s brother went to get their car and when he left the woman burst into tears, right away my mom ran to her and started comforting her and telling her it would be ok. I swear it took all the strength I had not to burst into tears at that very moment! It was like watching two injured puppies console each other. I could hear my Mom whispering to her to be strong and I had to look away because one of us had to keep it gangsta.Later my Mom told me the woman was crying because she couldn’t afford the treatment.
We hear that the family can afford the treatment but there’s this:
Today was hard but filled with hope. The doctors definitely had a plan of action and offered us options. I look forward to the days that follow. I know there are people out there that think we are crazy for spending our entire life savings on this without a guarantee, I used to be one of those people but when the person you Love most on the planet is told to go home and die you will go to any lengths and spend any amount of money for another shot.
The next day, Maria begins her “gene-targeted therapy.” This is an untested chemo cocktail based on a blood test which is the genetic equivalent of palm reading:
On a technical note, Mom began her first gene targeted therapy today. She’s taking a medication called PB, it obviously has a longer name but that’s the acronym,that attacks tumors on a cellular level and makes it easier for other medications to kill and break up the tumor. Her new doctors are approaching her disease with gene targeted therapy. Their goal is to stop and shrink her tumors. Once they get her blood and caris results back they will choose medications that match up with the markers present in her blood and design a specific treatment just for her. I have a good feeling about this.
Burzynski’s definition of gene-targeted therapy is so broad that even eating an orange could be considered a type of gene targeted therapy, because metabolism reacts with the products of gene expression. Of course, no matter how “targeted” it is supposed to be, you always have to buy Burzynski’s phenylbutyrate. Of course there is always a cheaper alternative available through Ucyclyd Pharma in Hunt Valley, but patients are apparently encouraged to buy it through the in-house pharmacy.
On the 16th we get the photo of the exterior of the clinic, the same one that so many patients have put on their blogs. And then money becomes an issue, including the bizarre practices of forcing patients to buy in house meds:
The very first drugs they prescribe you at Burzynskis you have to buy there, after that you can get prescriptions filled by your local pharmacists and hopefully your insurance can pay for it. Today, my Mom was given an injection for her bone metastasis, One injection once a month is, are you ready for this, brace yourselves, 3,300 American dollars! ONE INJECTION! This is apart from what she had to pay to get started and that’s not even ¼ of the medication she will eventually be prescribed. Her Blood markers showed that she has a lot of very active HER 2 receptors and will eventually be prescribed Herceptin and that only runs about 500 dollars A PILL, one single pill!
My heart breaks every time we go into the financial office but like I tell my Mom, I don’t need an inheritance I need a Mama Bear! If the treatment works we will find a way to pay, nothing is impossible. There is no way I can let my Mom die because we couldn’t afford it. To break the tension and make my Mom laugh I tell her she better start getting ready to sell some tamales!
The nutritionist was telling us that 70 percent of cancers can be prevented with nutrition alone. WOW. Basically people with cancer should avoid all red meat, eat 5 small meals with healthy proteins and complex carbs, also 1/3 cup of nuts is recommended and a wheatgrass shot every morning.
So far MB has been feeling good, she’s been holding up nicely and responding well to the new meds. She is such a trooper, taking up to 6 pills every two hours. The pills are the doctors special concoction, they refer to them as PB but they really are the antineoplastons in pill form. The doctor has cleverly found a way around the FDA by prescribing them for off label uses. Sneaky doctor;)
One of our nurses, Amanda, took a liking to us and made sure to bring over Joan, Joan has been fighting stage 4 colon cancer for 5 years, MD Anderson told her there was nothing more they could do so she came to Dr. Bs and is THRIVING! After only 2 months her tumor markers have dropped 70 percent! She said she’d never seen such a drop at MD Anderson,We’ve noticed a trend so far, everyone we meet is stage 4,they have been told, by their oncologists, to go home and make the best of the time that they have, they get a kick in the ass and a “See you later…but probably not”, by “modern medicine”.Ironically, what Dr. B is doing with his gene targeted therapy, seems a million times more modern and advanced than what we get at home.
I made this video in anticipation that I would be receiving the antineoplastons. Apparently after spending over 30,000 here I found out that the Antineoplastons are only reserved for brain cancer patients who have already undergone chemo radiation. FDA put this restriction on the Burzynski Clinic, so any other cancer patients are BASICALLY ONLY GETTING THE TRADITIONAL ALLOPATHIC TREATMENTS OF SYNTHETIC ANTINEOPLASTON PILLS THAT DID NOTHING FOR ME. HOWEVER I CAN SAY THAT THIS WAS PART OF MY PATH AND EVEN THOUGH I WASTED MY MONEY HERE I HAVE TO SAY THIS PART OF MY PATH LED ME TO WHERE i AM NOW. [...]
MBs doctor’s in TX called today and urged us to start chemo again ASAP, they said MB has a very narrow window of time to get it done before it’s too late and her body is to weak to take it. WOW, [J] has purposefuly been wasting our time, she’s not retarded, or maybe she is, she must know about this window but never bothered to tell us.
Today, I rubbed lotion on [Maria's] back and saw the toll cancer has taken on her body. She looks like one of those starving kids in Africa. Her arms are skin and bone, her belly is bloated because of the tumors, her skin is thin because of the meds, her hair is gone and her legs are swollen. When she takes off her shirt I’m shocked but unaffected, I don’t cry, I don’t feel like crying, I just rub lotion on her back and demand that God start doing something!Lately [Maria] sits in her chair in silence, I ask her questions and she doesn’t respond. She’s checked out. Her body is here but her mind is elsewhere and its not good. She’s numb too. It’s weeks like these that I pray God take her. She prays God take her too. I tell her to hang in there and she says she tries but that its getting harder.
[The fall has] forced us to reconsider many of the decisions we’ve made. We do not regret fighting,never that, we are just at a place in [Maria]‘s disease where all of us have stopped to think, “Is it still worth it, should we keep encouraging her to do chemo when we see that it leaves her bedridden, her body falling apart piece by piece, at this point is this a life worth living. Is all the suffering, the swelling, the wounds, the bed sores, the mouth sores the sadness worth it?” I still don’t know, someday’s I think yes and some no. Everytime she gets mouthsores or a wound it’s like I get punched in the stomach. I don’t know how nurses do it. Whenever I help heal [Maria]‘s wounds or even give her water to drink I’m forced to look away. I just don’t know anymore.
Elton W. was from Hong Kong. He was 5 1/2-years old on February 15, 2011 when he was diagnosed with a intrinsic pontine tumor, a tumor on the brain stem. His family kept a Caringbridge site. The prognosis is terrible for these tumors. Many, many of the patients you see on this site had this tumor.
On the 21st of February, Elton is defending the decision to seek out traditional Chinese medicine instead of real medicine, like surgery. The story is distressing, and I feel awful for the family. They have been taken for a ride by every charlatan they’ve met.
We start to hear about Burzynski in the first week in July 2011. Elton’s mother has been in contact with the father of Bobby W, and he recommends Burzynski. Again, and I can’t state this loudly or often enough, anecdotes are not the right type of evidence that would allow us to determine efficacy. Just because someone who was on a treatment doesn’t mean it was the treatment that cured them, that the diagnosis was correct, or that a spontaneous remission didn’t occur. Anecdotes may be suggestive of areas of study, but are no indicator of efficacy. Legitimate doctors do not depend on patient anecdotes, which are an almost universal warning flag of quackery.
By the 9th, Elton’s mother is seriously considering America and Burzynski. She has been talking to former Burzynski patient Jessica R. The mother has also sought out the website of Braiden N. The networks of patients, networks of who I can only describe as outliers, drag in so many people with false hope. It’s so disheartening.
On July 27, we get word that Elton is deteriorating bit by bit:
Elton has been deteriorating quite a lot lately, can barely walk now, in addition to his serious paralyze on his right face, tears and saliva keeps dropping, fluid choking, etc. I m finally tired of carrying him here and there (except the weekly SZ doctor visit and the acupuncture in Tai Wai every other day by Uncle Liu), not to mention the usual playgroup with kids/ moms gatherings. My energy seems to be “out of stock” lately (packing and unpacking contributed too). So i apologize for all the no shows/ replies over the past 2 weeks.
Further, the mother frets about the FDA’s supervision of the trials and the problems finding a real doctor to sign off on Burzynski’s asinine treatment:
Now, I am getting stuck in granting FDA’s approval of having Elton in this Phase III clinical trial (no freedom of choice of treatment even in America!!). They need me to submit a doctor’s letter saying Chemo/ Radiation will do no good for Elton, and they also need me to find a local doctor to endorse/ at least understand what we will do on Elton so that he can help to follow up in case of any emergency/ complication when we are back to HK after 1 month treatment in Texas. I am struggling where to find this Doctor!!! Dr Wilson Fung Yee Leung??? Guess he will kick me out of his room since we never revert back to his NK cell therapy recommendation with Mrs. Heung…..
On the first day of August, Elton’s mom mentions his further decline:
It was an exhausting day for both of us…Elton’s face is getting pale, and his left hand and leg become “powerless” (probably due to the tumor on his right side), i can’t handle carrying him any longer as he suddenly becomes heavier a lot (though his weight keeps decreasing) :( I will try the baby stroller from Otto and will work on the wheelchair option with CCF.
We also learn that she has been warned about Burzynski, apparently, and that some doctors capitalize on the fear of death and loss, and yet:
Frankly I am not afraid that elton is leaving us to go to Heaven, but i think i will regret/ blame myself if i did not do research of every possible way to help him!
This is a desperate gambit, but one that you see over and over and over in the patient stories, that a parent could not live with themselves if they didn’t try everything. Of course, that asks the wrong question. You have to ask what is the best option for the child, not whether or not you will have the luxury of not having to live with “what if”s when it is all over.
On August 10th we see things coming together as far as a trip to the US is concerned:
- doctor’s letter (thank your Dr Tony Luk – my good neighbor friend at Pictorial Garden!!!);
- Burzynski clinic’s positive reply who allows us to come for treatment (they have confidence to get FDA’s approval for Elton to go for their clinical trial);
- numerous friends who are helping major and minor arrangements (eg. accommodation, transportation, all the watch-outs like international driving license/ voltage, support from friends of friends who are living in Houston, etc etc, and even telling me 911 as reminder!!!).
- Noah’s mom – [...] – current patient from Burzynski clinic – sending email to remind exact medical fees/ schedule/ etc..and CONFIDENCE most importantly!
By August 12th, travel arrangements have been made and the family. They leave for Houston on the 17th and have an appointment at the clinic on the 18th at 12:30.
On the 18th, they start the process and arrange to go to St. Joseph’s to have a catheter inserted into Elton’s chest. (These catheters, by the way, are gateways for infection a major drawback of the treatment that often keeps kids on antibiotics and in the hospital for extended periods of time.) On the 20th, they move into their temporary home, an apartment about 30 minutes away from the clinic. People affiliated with a loval church are helping the family get by. On the 23rd the catheter is inserted.
On the 25th we hear:
Clinic has delayed Elton’s 1st treatment schedule to 1230pm on Aug 26….waiting bothers me a lot!Dr Alejandro Marquis, Elton’s doctor in charge at B clinic, told us that his 11 years old daughter just got diagnosed with leukemia….cancer monster is everywhere! :(
I have started the new drugs for 3 days already, through the IV tube infused directly into my blood, and i need to carry the pump (like a timer) 24 hr/ day which connects me and the drugs. Everything goes well so far and i was requested to drink plenty of water to dilute its high sodium level…as you can imagine, i need to pee all the time too :(
These aren’t the only side effects, of course. On one version of the ANP informed consent form that the clinic gave its patients, a partial list of ANP’s side effects included severe or life-threatening increased sodium concentration in blood; risk of death; allergies; difficulty arousing, coma, severe or life-threatening low potassium concentration in the blood, decreased levels of consciousness, upset stomach, low platelet numbers requiring transfusions, severe fatigue interfering with activities of daily living, fever greater than 104F, frequent urination at a rate of urination at least once every hour of more often or a requirement for a catheter, liver toxicity, hallucinations, vomiting, chills, swelling, irregular heartbeat, decreased white blood cell count, and slurred speech. It’s irksome to hear that former patients are now saying that there are “no long term toxicities.” Coma and risk of death seem to me to have a long term impact, and they need to stop kidding themselves that they are promoting anything other but a potentially fatal treatment. And they need to cut the word “non-toxic” from their vocabularies.
On September 2nd, we get this update:
Elton feels tired easily since the increased dose of ANP (Antineoplaston), but he is not a quality sleeper (refuses nap) and he needs to pee once/ twice during the night.. Last night, it was so funny that we had dinner at Kenneth and Clara’s antique house and he fell asleep at the table/ then on sofa with his full spoon of rice and veggi still in his mouth till we sent him home. And in the morning (3am), he woke up for pee and he said his mouth was full of rubbish!!!He requested for To Fu “flower” for breakfast this morning (dessert last nite made by clara), and the nightmare begins….he did not feel well on our way to clinic, a bit headache and having nausea (desire to vomit). The doctor and nurse assessed him , draw blood and recommended us to do decadron (Steroid) IV on him through the catheter as his tumor may have got inflammation (natural effect after ANP) which causes all these symptoms.Unwillingly, i acted as a nurse to inject the decadron slowly through his catheter (0.2ml), once i finished, he vomited all the To fu out….he did feel better after a short while as we all know that decadron has miracle instant effect which can boost him up for a while. and he needs to take the oral decadron pill twice a day since today till these inflammations symptoms are gone…guess it will take a few months or even longer (said the doctor) :(
I m doing fine with the medication, but i need to carry the pump and the IV bags 24 x7, and i need to pee over 25+ everyday which makes me very inconvenient to go out. I missed all my new friends in Houston and also the beautiful church there….
Discouraging MRI result: 6.2 x 5.1 x 6.2 cm (vs. 5.4 x 5.3 x 6.0cm on Aug 16, 2011)…compressing the fourth ventricle and there is risk of hydrocephalus and shunting may be needed. Dr Hung suggested to go admission to CCC at PWH asap and to increase steroid dosage to buy time (1mg x 4 per day).I was too calm for the result as i expect so, and we discharged at 1130pm as Elton wants to sleep at home…. he now cannot walk, stand, sit at all, having difficulty in eating, drinking and talking, fatigue/ jet-lag, terribly bad temper…what can be more worse?? will sunshine come after the typhoon?
Elton’s face turned PURPLE yesterday and I almost LOST him…..We had our 2nd attempt to remove the respiratory ventilator this pm, Elton was fine for the first 15 mins, he was working hard to breathe by himself though the breath was very shallow! Then the nurse inserted an OG tube into his nose to reach his stomach, which triggered his choking problem, etc. Blood oxygen level dropped drastically, lips were completely purple and all the doctors and nurses in ICU unit RAN to come saving his life!!!! Finally, with NO choice at all, we made the decision to re-install the ventilator to help him to restore breathing and make him stable first! I almost lost him today!!! No No No, PLEASE!!!!!!!