It’s not over, people. A few days ago, I started posting the stories of patients who had been to see Stanislaw Burzynski and appeared in the news. In the previous post, almost all of them, with a single exception, a girl whose cancer had already been in remission twice (odd, I’m given to understand), died. Orac has recently looked at three cases that have been presented as evidence of Burzynski’s treatment, and he raises some profound, disturbing questions. I omit these cases.
As I suspected, there have been many more. They seem to appear in the news when some family makes a desperate appeal for money to go to Burzynski’s clinic for his unproven treatments:
- On December 1, 2011, the UK’s Watford Observer reports that a 4-year old girl from Oxley Hall is fighting an “ependymoma brain tumour”:
“But at The Burzynski Clinic in Houston, Texas, a pioneering treatment could prove the answer to [the family's] prayers. The family had to raise £20,000 for preliminary tests, which established that [the girl] is suitable for treatment, and further cash for ongoing medication.” [emphasis added].
The same paper reported on 18 July that the family successfully raised £100,000 for the treatment.
- In Australia, the Ballarat Courier reported on 29 Nov of this year that a group is raising money for Braydon Stefan’s trip to the Burzynski clinic by auctioning off tradesmen’s services. They have already raised $60,000, for a Dr. Charles Teo (could an Aussie look into this guy?) who thought that Burzynski might be a good match for Braydon, at least according to the Courier on the 23rd. [Update: I'm distressed to report that Braydon died in June of 2012]
- On 23 November 2011, the Cambridge Evening News reported that the family of Supatra Adler, a 6-year old diagnosed with a “Diffuse Intrinsic Pontine Glioma brain stem tumour.” They spent 3 weeks at the Houston clinic, and they had doubts:
“We started doubting ourselves with this course of action as it required using up all our savings and travelling to Houston, Texas, for an extended period of time. You see the money is not really the issue other than we were worried it was a scam like so many other alternative treatments out there and if we expended all our savings on this treatment and it was a scam then we would have nothing left should a legitimate treatment come available. During this period it was a constant high and low moment for us as we flip-flopped on whether or not we should go. In the end we both agreed that since the mainstream medical community was offering us no hope for Supatra that we should try everything and anything.” But in the end the cost was immense: “She added the treatment had almost exhausted their savings, costing more than £89,000 so far with yearly costs of up to £63,000.” [Update: 8/10/12: I am very sorry to report that Supatra died in June of this year.]
- On 29 June 2011 of this year, the Las Vegas Journal-Review reported that teenager Kassidy Merritt was going to see Burzynski for treatment of a brain stem ganglioglioma. Her father said that it was costing them $30,000 to start treatment, that the Ronald McDonald House would not put them up in Houston because of Burzynski, and that their doctors called Burzynski a quack. I’m happy to report that she’s still fighting, though I don’t know what her status is as far as the Burzynski clinic is concerned. We’re certainly pulling for her!
- On 17 February 2011, the Contra Costa Times reported that a fundraiser was being held for 4-year old Noah Stout, who had an inoperable brain tumor. Burzynski’s treatment was at the time projected to cost $135,000, toward which mensch Carlos Santanta donated a guitar for auction. He is still fighting too, and that’s a damn cute kid!
- On 27 January 2011, the Grand Haven Tribune reported that Christine Tooker was raising money for treatment. I have only seen her appear in one other article, in October about end-of-life care, and she sounds extremely practical about what is happening to her. I wish her the best.
- Randy Goss, whose story I encountered while looking through the “cancer cures” section of Yahoo’s message boards, according to the person who posted: “[Goss'] treatment was with Dr. Burzynski’s antineoplastons for kidney cancer [...] After being cancer free the malignancy returned in 2000 and he was successfully treated again by Dr. Burzynski” At the time of the post, Mr. Goss was seeking additional media coverage of his cure. By his own account, he was feeling better and gaining weight after his return from Burzynski’s clinic in 2000, and he gave his contact information in Dunkirk, New York information in a post, seeking to spread the message of his cure. He died in 2001 of cancer.
- On 14 December 2009, the Patriot-Ledger reported on Natalie Hull who was diagnosed with a diffuse intrinsic pontine glioma. It’s not certain that she ever saw Burzynski, however. The family was praying at the time that she would be accepted at his clinic, and they had reached financial ruin (had they applied with the standard gigantic fee that Burzynski apparently require?), but the paper reported that Natialie had died a few days later.
- On July 30, 2009, the Salt Lake Tribune reported that the parents of Maryn Cella were optimistic about raising $100,000 to get their daughter treatment. There was a $20,000 down payment. Maryn succumbed to her cancer. The blog that her mother set up recording the experiences is an instructive, genuinely affecting read about the roller-coaster that treatment can be. I will leave it to others to examine the family’s experience with Burzynski.
- On 11 May 2008, the East Valley Tribune reported that 2-1/2 year old Briannah Olsen had undergone treatment at the Burzynski clinic. Again we see a story of a shrinking tumor, but which ends with tragedy.
- On 3 April 2008, The Spokesman Review reported that Greg Hiatt was seeing Burzynski for treatment. “
“Greg is doing really well,” his wife said with conviction. “He hasn’t needed to have his chest drained since he began treatment and hasn’t had any side effects.” She credits the positive attitude of those at the Burzynski Clinic and their faith in God for the fact her husband is still functioning when he was given such a negative prognosis. “Our faith has kept us strong,” she said. In the meantime, Hiatt’s medical costs are adding up – his medications alone total more than $35,000 each month. The family believes in the course they have chosen, but know their medical insurance won’t stretch to cover many of the expenses they are facing.”
- On 18 August 2006, the Lowell Sun reported that 6-year old Justin Bissett had been enrolled with the Burzynski Institute, but it was not without significant expenses, for which his community kicked in:
“The Bissett family has found some hope in a clinical trial for an experimental molecular treatment that Justin has been enrolled in at the Houston-based Burzynski Research Institute.
Bissett said there has been a marked improvement in Justin since. But the treatment, as well as Justin’s medications and specialized nutritionist, constitute a significant financial burden on the family, Bissett said. The latest in a series of fundraisers to help offset the medical costs will be held tomorrow in Tewksbury, courtesy of a group of Bissett family members and friends.”
- Lisa Johnson of Plymoth told the Star-Tribune on 15 May 2006 that: “[W]hen a doctor at the Mayo Clinic says there is no cure, why would I question that? But I take all of these recent occurrences as sign that God is saying, `Lisa, you’re going to be OK. Hold on to hope.’ And I feel this treatment with Dr. Burzynski is my only hope.” She died in 2008.
- The Chicago Daily Herald reported on 6 July 2005 that Mateo Casimiro Rotger was undergoing the Burzynski treatment through the clinic: “Today, Mateo is part of a Federal Drug Administration study at the Burzynski Clinic in Houston, Tex., which specializes in cancer treatment. Though it is costly – Rotger estimates $8,000 per month for medical costs and equipment – members of St. Isidore Church in Bloomingdale are offering their grown-up piggy banks. The church has set up a fund to help offset Mateo’s medical costs, many of which are not covered by insurance.” Mateo passed away in September. The memorial website says of Burzynski’s treatments: “We hope that this is the treatment that will answer our prayers. However, as with all things worthwhile, there comes a price and a rather expensive one. The cost of the doctors’ fees, treatments and medicine comes to about $150,000 for only one year’s worth of treatment. “
- On September 22, 2004, the State Journal-Register (Springfield, IL) reported that a benefit dinner for Kathy Robertson was being held to “help defray the cost of experimental cancer treatment for Robertson at the Burzynski Clinic in Houston.” I am unable to find her outcome online, and hope it turned out well.
- An announcement in the 14 Aug 2004 Arkon Beacon Journal announced the following golf benefit:
Organizers of the “J.E.M. Golf Outing” — scheduled for Aug. 29 at Raccoon Hills Golf Club in Kent — are offering up lots of prayers for a rain-free day, but, more importantly, for remission for the three people designated as beneficiaries of the outing:
+ Eunice Huffman-Nichols, a 41-year-old Streetsboro mother of two who was diagnosed with a brain tumor seven years ago. (Eunice died in July of 2005.) [Update 9/29/13: I received a message from Eunice's brother, who asked I relay the following information: "My sister Eunice, did raise funds for the treatment. She had a 64% reduction of her tumor after 6 months on the ANP treatment, continued for a few more months on the treatment until there was not growth or reduction for a number of months. She was able to walk again, regain her vision and even started driving again! Ended the treatment and stayed stable until her death. She was off the treatment completely for 4+ months with no changes in the tumor at all and then had an emergency situation unrelated to the tumor and passed away while in the ER."]
+ Mary Vukich, an 11-year-old from Orwell in Ashtabula County with strong ties to the Akron-area community. She was diagnosed at the Cleveland Clinic in October 1999 with six inoperable brain tumors. (I believe that Mary is alive and a member of the Burzynski Patient Group.)
Like the other two, Mary received alternative medical treatment (not covered by insurance) at the Burzynski Clinic in Houston. Cost to golf is $100 per player or $400 per foursome.
- On 10 January 2004, Deseret Morning News reported a fundraiser for Megan Thompson. The projected goal was $180,000. I found no outcome on the web.
- Evan Shaw reported a cure in the 22 July 2003 Calgary Herald. It cost $190,000. I can find no follow up and hope for the best. Searching for corroboration of this story, I came across the story of Albert Loranger who was looking to raise $11,000 a month. I can find no outcome.
- On 27 April 2003 the Sunday News reported that Linda Biemiller was raising money to visit the Burzynski Clinic:
“In January of this year the couple traveled to Burzynski Clinic in Houston, Texas, to meet with Dr. Stanislaw Burzynski, a physician who treats patients with brain tumors using antineoplaston therapy.
“We spent two weeks at the clinic receiving training on how to administer the treatment,” said John. He explained that a portable pump administers two different medicines every four hours for almost two hours, 24 hours a day. The initial treatment and trip to Houston cost more than $25,000, with ongoing costs of $7,200 a month for an average of six to eight months. If the outcome is good, Linda would be put on a pill form of the treatment at a cost of $2,000 a month.”