Megan F. was an athletic 11-year old at Klondike Elementary School in West Lafayette, IN.
Following her diagnosis, Megan received radiation which she finished on Oct 19th (apparently around the same time she started on Decadron), and on September 10th she started on Burzynski’s cocktail of urine derivatives. At the time, another patient of Burzynski was receiving a lot of press, and this spurred Megan’s father to launch a campaign to support Burzynski.
On January 10, 2000, Kurt gave a public alternative medicine yahoo group an update about his daughter. All we can tell is that she does not seem to be improving after 2 months on the ANP, while experiencing all of the side effects:
Megan’s tolerance of Dr. B’s antineoplastons treatment for her brain tumor continues to be good. She is getting a little more than 2000 cc’s over the course of a 24 hour period every day. She starts infusing from her pump every 4 hours for a 2 hour continuous time span. Megan is up several times a night to go to bathroom and get a drink of water as the sodium content in the medication causes thirst. Usually I get up as well to make sure she has enough water to drink and that she gets safely back into bed.
Megan’s symptoms have begun to get worse little by little as we continued to reduce the daily Decadron dose. Her double vision has returned (although not a bad as originally), her left leg has gotten a little weaker to the point where she noticeably limps, dragging her leg along, and her left arm is the weakest it has been, with her left hand basically being useless. The left side of her face is slightly droopy.
We don’t think that the increased symptoms are due to tumor growth, but a combination of antineoplaston treatment and the adrenal glands not producing up to speed yet with the withdrawal of Decadron from her system. […]
By 4 February 2000, we see from the Purdue Exponent that a number of fundraising events for Burzynski were planned in the near future, including a Bingo and Casino night at a local Elk’s Club, as well as an indoor marathon that would last for 2 weeks at a local health club. They have already raised $50,000.
On March 20th, we receive news that we have learned to despair of, when a parent says that the tumor is dying from the inside, that the center of the tumor is now a fluid. OVER and OVER we see this in Burzynski’s patients. We see this in Chase S’s horrifying story.
- 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 saw it again in the case of Samantha T.
- We see it AGAIN–as far back as 1994!–in Cody G.’s story.
- We saw it again in the story of Christy M.
And in 35 years Burzynski seems to have never bothered to have learned that it is most likely a sign that the tumor has outgrown its blood supply. Or he’s the genius that his supporters say he is, in which case…
Sorry for the delay in reporting on Megan’s 4/12/00 MRI. We went down to Houston for a follow-up with Dr. Burzynski on Monday, April 17. Here’s where we are:The initial reading by the radiologist at Home Hospital in Lafayette, Indiana (where we get our MRIs) showed an incremental decrease in the enhanced area of the tumor compared to the last MRI in February. He felt there was no change in the overall size of the tumor. Dr. Burzynski agreed with the Home Hospital radiologist regarding the overall size, but disagreed with him on the enhanced portion of the tumor – Dr. B. thought there was no change in the enhanced part. Our radioncologist in Indianapolis, who specializes in brain tumor MRI readings hasn’t received the MRIs yet. I’ll report on his opinion in another email.Basically, at the worst, we see no change at all in the tumor. When compared to the alternative of a tumor increasing in size, we’re happy with the result! Dr. B. pointed out to me that the MRI shows a darkened spot inside of the tumor, which could be dead tumor or water. I had heard this scenario mentioned on the brainstem list before, where the tumor dies from the inside out.
Neurologically speaking, Dr. B. thought Megan had improved since her last physical, in spite of being so low on the Decadron. Her left hand/finger movements had a greater range as well as her left arm movement. Diminished strength in her left side continues to be a problem, but her slightly improved movements give us hope. With sustained physical and occupational therapy, we hope to build up her strength which was lost in part to the effects of Decadron. You lose bone and muscle mass with long-term usage of Decadron. Also, Dr. B. thought that Megan was weaning off of Decadron sooner than he had expected.
In her dad’s 15 Aug update, we receive the full timeline of his daughter’s treatments:
- dx 8/19/99 – diffuse intrinsic pontine glioma
- 10/19/99 – finished 3D conformal radiation,5400 rads
- 10/21/99 – started dexamethasone 4mg daily
- 11/10/99 – started Burzynski treatment
- A10: 300 cc’s (6 doses every 24 hours)
- AS2-1: 40 cc’s (6 doses every 24 hours)
- 4/29/00 – switched from 0.25 mg dexamethasone daily to equivalent 4 mg methylprednisolone
- 5/13/00 – started alternate day methylprednisolone schedule
- 6/15/00 – stopped methylprednisolone – off steroids
- 6/24/00 – started methylprednisolone equivalent to 1 mg dexamethasone
- 7/10/00 – increased Burzynski treatment A10
- A10: 330 cc’s (6 doses every 24 hours)
- AS2-1: 40 cc’s (6 doses every 24 hours)
- 8/02/00 – stopped Burzynski treatment
You will notice that the family quit the Burzynski treatment on August 2. As noted above, and as Burzynski must have seen hundreds of times, blisters in the center of the tumor are BAD omens:
Megan had her MRI on August 2 and the results were not good. Here is statement from MD Anderson Medical Center evaluation, I believe, that Dr. Burzynski has been using to verify patient MRI reports: MRI Megan’s evaluation of the head from August 7.2000 (MRI scans sent).
The measurements are expressed in centimeters.
- Pontine mass 2.4×2.3 = 5.52
- 1.8 x 1.8 = 3.24 (baseline MRI)
- 5.52 – 3.24 = 2.28 (>50% increase)
- Proton density – non enhancing pontine mass 5.2×3.4= 17.68 (41% increase)
Overall enhancement shows considerable increase.The mass now extends laterally into the right cerebellopontine angle cistern and medially to the midline. The left prepontine cistern shows further enhancement. […]
This report concurs with the radiologist reading at Home Hospital in Lafayette, IN where Megan had her MRI done. Her radioncologist at IU Med Center in Indianapolis confirmed both reports above. He described the tumor mass as now “dead” in the center as the tumor outraces the blood supply and expands at the periphery of the tumor. The result is a continual decrease in the amount of space in the brainstem, causing pressure on the different cranial nerves. This activity and it’s timing is consistent with Megan’s type of tumor regardless of treatment or lack of treatment according to the IU Med Center radioncologist. However, he thought it strange that the right side of the pons, which was so pronounced originally, has not increased at all.
Of course, Burzynski decides that the best thing to do at this point, when his treatment has so far had as much effect on the tumor as giving it a stern talking to, would be for the family to buy even MORE of his patent chemotherapy (and it is chemotherapy):
Dr. Burzynski advised that we increase Megan’s A10 medication from 330 cc’s every 4 hours to 500 cc’s every 4 hours, along with increasing the AS2-1 medication slightly. This would increase the actual infusion time to almost 3 hours out of every 4. When I asked if there was some other alternates to just increasing the dosage, Dr. B. said we could combine it with chemo. However, the FDA wouldn’t let him do it as the clinical trial was restricted to just antineoplastins.
Going the Burzynski route means elbowing out legitimate treatments. Fix this in your mind. Alternative medicine stops people from getting real treatments.
[Megan’s mother] and I also had to consider Temodar, Thalidomide, VP-16, BCNU, and VAC chemo cocktails. Although they might extend life a month or two, there is a good likelihood that they would make Megan sick AND they still would not be a cure. We’re not interested in having Megan endure these last ditch efforts with no chance of cure.
Taking everything into consideration, especially Megan’s wants and needs, we decided to discontinue Dr. B’s treatment, which we stopped last Wednesday. […]
On Sept 6th, Megan’s mother leaves an update about her daughter’s progress, now that they are no longer actively treating the tumor (and won’t submit to experimental therapy unless something really unexpected comes up). The next week, the deterioration was pronounced and within two weeks the family had moved Megan to the hospital.
On the morning of October 1, 2000, Megan slipped into a coma and died.
I’m getting damned tired of writing about these deaths. How high do we have to pile the bodies at the door of the Burzynski Clinic before someone in authority takes decisive action and decides to yank approval of his clearly futile trials? (The man is 0 publications for 62 trials!)
For reliable information about clinical trials, visit clinicaltrials.gov. Please consider donating to St. Jude’s Children’s Research Hospital, who unlike Burzynski, charges nothing to treat sick children.