Testimony
of
Raphaele and Michael Horwin
Hearings
on
Integrative Oncology
Cancer Care for the New Millenium
U.
S. House of Representatives
Committee on Government Reform
June
7, 2000
A
Child has the right to…
Affection, love, and understanding.
Adequate
nutrition and medical care.
Full opportunity for play and recreation.
A name and nationality.
Be among the first to receive relief in times of disaster.
Be a useful member of society and to develop individual abilities.
Be brought up in a spirit of peace and universal brotherhood.
Enjoy these rights, regardless of race, color, sex, religion, national or
social origin.
- United Nations’ Declaration of the Rights of the Child Resolution 1386
XIV, 20 November 1959.
Over
forty years ago, those powerful words were written and endorsed by many
nations throughout the world including the United States. It
is a beautiful declaration but sadly it is only an illusion. The
medical establishment took every single one of those rights away from
our only child Alexander. Without
the right to live, there are no opportunities for affection, play, or
love
Alexander was two years old when he was diagnosed with
medulloblastoma, the most common pediatric brain tumor.
This cancer is rising in frequency.
Alexander was a strong, happy, very intelligent little boy who
loved life. He enjoyed trucks
and could name various types of bulldozers, backhoe’s, garbage trucks,
cranes, and tankers on sight. He
had a special fascination with airplanes and helicopters and enjoyed his
visits to the airplane museum where he could sit in the cockpit of a real
helicopter and make believe he was flying.
He enjoyed being pushed in a stroller while his mommy roller-bladed
behind. He loved taking his
daddy down to the boat docks to show him the little animals he had found
attached to boat-lines that had lain in the water too long. Of course, he loved the TeleTubbies and Barney and dreamed
of the day when he would go to school wearing his little back pack, meet
the real-life “Barney’s backyard gang,” build things, make friends and
play. Alexander was a wonderful,
handsome, sweet, happy child who was adored by a large extended family.
When he was diagnosed with brain cancer we turned to the FDA and
the medical profession for help.
What happened next none of us could imagine.
After Alexander was diagnosed, we were rushed
into UCLA Medical Center for surgery.
The neurosurgeon was unable to remove the entire tumor and Alexander
needed a second surgery. This
second operation was done at Children’s Hospital Los Angeles by a wonderful,
caring, and experienced neurosurgeon named Dr. Gordon McComb. This second surgery left Alexander tumor-free.
But we were warned that without further treatment this cancer always
returns.
We
conducted around-the-clock research to find the cancer treatment that
offered Alexander the best chance to survive.
After scrutinizing therapies and speaking to parents and patients
from throughout the world, we selected the Burzynski Clinic in Houston
Texas. Burzynski, a MD Ph.D.
has a twenty-year track record of curing or controlling the re-growth
of malignant brain tumors in children and adults with an innovative cancer
therapy. In addition, his
therapy is non-toxic and offers a good quality of life.
With this decision made we took Alexander to Houston.
There, on September 21st, 1998 Burzynski met with us
and gave us the incredible news that he could not treat Alexander.
He explained that the FDA controlled his protocols and it required
that Alexander have the tumor return in his brain after using chemo and
or radiation. We explained
that our son had suffered through a total of sixteen hours of brain surgery
to be tumor free. Burzynski
said his hands were tied. Later, through conversations with other parents, we
would learn that the FDA had actively restricted other children from gaining
access to this potentially life saving therapy.
This
position by our government signed the death warrant for Alexander and
many other children. Now,
instead of needing a diagnosis of brain cancer to enter the Burzynski
Clinic, the FDA was requiring that the child first receive “standard therapies”
(chemotherapy and radiation) and have “measurable disease.”
Alexander did not meet either of these two criteria and that’s
why, at the age of two, he was rejected.
Back
in Los Angeles, we scrambled for other options but we were unable to find
any other viable non-toxic therapy that had any record of success with
pediatric brain tumors. We
spoke with the oncologists at Children’s Hospital.
Dr. Hyder, the individual who would become Alexander’s oncologist,
explained that radiation was a poor choice of post-surgical therapy. He explained to us that at two-years old, Alexander was much
too young. Radiation would
destroy his developing brain, leave him with severe neurological disabilities
and reduce his IQ to around 60, which would mean retardation. But Hyder held out a life raft — chemo. Chemotherapy, he told us, was both effective and relatively
safe. Much safer than either
surgery or radiation. He
told us that in respect to the toxicity, young children do extremely well
on chemo. He said that he
could give Alexander the latest “state-of-the-art” chemotherapy.
He recommended a new protocol called CCG 9921(A) comprised of four
drugs: vincristine, cisplatin, cyclophosphamide (also called cytoxan)
and etoposide (also called VP16).
He told us that chemo would prolong Alexander’s life if it didn’t
save it. He told us that
this was Alexander’s best hope.
Yet,
even with these encouraging promises we still hesitated.
The idea of filling our son’s body with poisons in order to make
him healthy didn’t make sense. We
continued to pursue Burzynski’s therapy.
We found that there were several doctors who planned to use this
non-toxic approach outside the USA, beyond the reach of the FDA, but they
were not up and running yet. The
clock was ticking for Alexander.
Hyder began pressuring us to start the chemo. We began receiving faxes and phone calls from him that communicated
his impatience with us. The
following quotes are taken verbatim from Alexander’s medical chart.
Each entry is written by Hyder.
September
25, 1998
Mr.
and Mrs. Horwin and I discussed treatment options in the office for about
two hours…We discussed the risks of chemotherapy at length including low
hemoglobin, low white blood cells, low platelets, infection, need for
blood transfusion, need for platelet transfusion, pain, nausea, vomiting,
hair loss, skin injury, heart damage, lung damage, liver damage, kidney
damage, loss of hearing, small stature, hormonal problems such as low
growth hormone or low thyroid hormone, infertility, second cancer, intellectual
decline, worsening of neurological symptoms, ineffectiveness, and death.
Mr. and Mrs. Horwin were quite distressed by all the potential
side effects, but I explained that despite all these risks, I believe
the potential benefits of chemotherapy in prolonging the length of cancer
free survival or possibly cure are greater than the potential risks.
October 2, 1998
…without
chemotherapy I am quite certain that the disease will relapse and this
could possibly result in Alexander’s death.
PLANS: We will proceed with chemotherapy like CCG-9921A, as the
best available therapy.
October 3, 1998
I
received your voice mail message that you have decided not to bring Alexander
for scheduled chemotherapy today…Alexander needs chemotherapy now…We need
to get chemotherapy started if Alexander is to survive this disease.
October 6, 1998
“About
4:30 p.m. on October 5, 1998, Mr. Horwin telephoned and asked me about
a variety of biological therapies such as “nerve cell growth factor,”
“retinoic acid,” and “tumor necrosis factor”…Mr. Horwin asked to use these
biological therapies for his son before chemotherapy.
I again told him clearly in my professional opinion, chemotherapy
is the next treatment to use because of its known clinical efficacy.
He was distressed by the limitations of chemotherapy, since treatment
is successful in only about 30-40% of children with Alexander’s type of
cancer…I explained that the best opportunity we have to successfully treat
Alexander’s cancer is to use chemotherapy now…I reiterated that my best
professional advice which is to use chemotherapy now against Alexander’s
cancer. I spoke to Mrs. Horwin
and explained what I had explained to her husband.
I told her that my best medical advice is to use chemotherapy for
treatment of Alexander’s cancer.
I told her that without chemotherapy, Alexander may die from cancer…”
After
more assurances from Hyder that his drugs would, at a minimum, “buy as
time” we brought Alexander in for his first round of chemotherapy on October
7th, 1998. Alexander
sat on his mommy’s lap watching his favorite Barney video.
The nurse came in the room covered with a protective “spacesuit”
that covered her body with blue plastic from head to toe.
She hooked up the bottles labeled “biohazard” to the IV pole and
connected it to Alexander’s port-a-cath that accessed a vein near his
heart, the only vein strong enough to take the chemo and not burn clean
through. Then she started
the drip. We cried quietly
as this bottle of poison emptied into our son’s body.
The nurse warned us not to change Alexander’s diapers without wearing
gloves. She told us that
his urine could burn our hands.
To reassure ourselves, Raphaele and I repeated the words
that the oncologists had told us.
“We’re buying time.” And
to Alexander we said, “This is medicine that is going to help you.”
What
we didn’t know and what we couldn’t possibly know was that those words
were delusions.
After the first round of chemo, Alexander began to change.
Even after two brain operations, Alexander was still a vibrant,
ruddy, strong, energetic child.
But as the chemotherapy repeatedly filled his small body Alexander
began to die inside. First
the relentless stomach pains and the horrendous projectile vomiting began.
Then his beautiful curly hair fell out.
Next his dark skin tone turned pale as a ghost.
He got sick with fevers and spent weeks in the hospital. Then there were the blood transfusions to replace the blood
cells the chemo had killed, the hearing tests to see if the chemo drug
cisplatin had not devastated too much of his hearing, the nuclear medicine
tests to check if his kidneys were not giving up under the strain of processing
so much poison, the liver function tests to ensure that his liver was
not being destroyed, etc.
During chemotherapy we had to squeeze an antibiotic into
his nose called nystatin several times a day.
He hated it and buried his face in a pillow when he saw it coming
with all the strength his little body could muster.
One of us had to pin Alexander down and keep his head immobile
while the other pushed the syringe into each nostril and injected the
solution. We were also called
upon to give him GCSF injections at home.
These injections into his legs were designed to raise his blood
cell counts. It was horrific. We felt as if we were actively engaged in the slow but sure
torture and destruction of our own child.
Then we found the following statement written by Hyder
in our son’s medical chart. It
was dated September 26, 1998:
“Dr.
Heideman also called me because he was very concerned about Mr. and Mrs.
Horwin…He was very concerned that the family would refuse treatment and
that a court order would have to be obtained to treat Alexander.”
And
on October 6, 1998 Hyder continued:
“I think that if Mr. and Mrs. Horwin do not bring Alexander in for chemotherapy
tomorrow, additional steps will be necessary.”
We
went to see an attorney to find out if the oncologists could take Alexander
from us if we decided to stop chemo.
Incredibly, the answer was yes.
The lawyer explained that the court could take custody until a
judge decided what to do. We
weighed everything. If we
said “no more chemo” to the oncologists we knew that we might get a visit
from a police officer and a social worker.
Alexander would be taken from us screaming.
His last days alive could be spent out of our reach in some kind
of foster care environment away from his home, his family, his toys, everything
he knew and loved while an over-burdened legal system decided what to
do with him. If we agreed
to continue chemotherapy the horrific side effects would persist but the
oncologists assured us that the treatment would prolong Alexander’s life
if not save it. If we left
the country, we would have our son but no blood tests, MRI’s, or follow-up
by the surgeons who operated on him.
Those were our three choices, one worse than the next.
What
do we do? We did not have
a choice of therapies. The
FDA had taken away our first choice of treatment at the Burzynski’s Clinic.
The oncologists warned us that if we didn’t use chemotherapy that
the tumor would probably return in three months.
These doctors assured us that the chemo they were administering
to our son was the current “state-of-the-art.”
They told us repeatedly that this was Alexander’s best choice for
a long and healthy life.
We continued the chemotherapy. As a result of the drugs, Alexander’s balance was lost, his
ability to see deteriorated, and he lost hearing in one ear. The whole thing was horrendous.
We never stopped looking for alternatives.
After three sessions of chemo, we had found a clinic in Switzerland
that had a good track record with pediatric cancers using a non-poisonous
approach. Raphaele told Alexander:
“No more chemo, Ninouche. It
is finished! No more chemo or hospitals!”
Alexander was thrilled. “Yeah
mommy, no more chemo,” he smiled.
This was on December 7th, 1998.
But it was already too late. After a “clean” MRI on January
4th, Alexander had a spinal tap. A day later Alexander complained of pain in his head and back
and he began to vomit. We
asked for another MRI but Hyder, the oncolgist, refused because he had
done one just a few days previously.
Hyder told us that Alexander’s pain was just a side effect of the
spinal tap. But as each day
passed the pain became worse. “Mommy
I have pain here and here,” Alexander repeated putting his hand on his
lower back and on his head. His
suffering was increasing. We
brought Alexander into the hospital on January 11th and Hyder
ordered a CAT scan without contrast.
We were told that the scan looked “fine,” although later, we would
find out that a CAT scan especially one taken without contrast is not
designed to reveal the presence of a returning brain tumor.
As Alexander’s pain continued to increase, Hyder told us to give
Alexander Tylenol and “Mountain Dew” - the soft drink because it had caffeine
for his headache. Evidently,
the young oncologist was still under the impression that Alexander’s pain
resulted from the spinal tap, but we knew something was wrong.
Finally, on January 18th, we brought Alexander into
the hospital and demanded a MRI.
Hyder refused to order the test.
He explained that it was too late in the day to schedule one.
We had a confrontation. We
would not leave until a MRI was ordered.
Finally, Hyder relented.
Alexander was wheeled into the MRI suite.
We told him that he would sleep for a while and then when he woke
up mommy and daddy would be there and we would go home.
An hour later we had the news.
It was surrealistic like the first time we were told our precious
son has a brain tumor.
Hyder shook his head and told us that Alexander had over
30 tumors throughout his brain and spine.
“What does that mean?” we asked completely stunned.
Hyder just continued to shake his head.
We were ushered out of the MRI suite.
Alexander was waking up slowly recovering from the powerful drug
nembutal. He smiled because
mommy and daddy were standing over him.
“Mommy, I have to throw-up,” he said apologetically and
threw up on the floor.
“It is OK Alexander, it is OK Ninouche, mommy loves you
so much.”
We
were keeping back the tears to maintain our sanity in front of our 2 ½
year-old son. One of Alexander’s
neurosurgeons from Dr. McComb’s team stopped in to look at the MRI and
then came out to talk with us.
“What is it?” we asked him.
“Leptomeningeal sarcoma. I am so sorry. There
is nothing we can do.”
“How is this possible?”
“It happens,” he said.
“How often,” we asked.
“It happens sometimes.
I’m so sorry.”
How long does Alexander have,” we asked.
The surgeon paused.
“A few days, perhaps,” he said.
We stood silently, holding Alexander’s hands.
“I’m going to ask Hyder what we can do,” I said to my wife.
I returned to the MRI suite.
“The only thing we can do is send you home with hospice
care. I’ll give you a prescription
for morphine and decadron,” Hyder said as he awkwardly patted me on the
shoulder. “I think it is
better to keep your son here tonight and you can go home tomorrow,” he
added.
Now, with a few days to live and already having
the “benefit” of chemo, Alexander was finally a good candidate for Dr.
Burzynski. He now met the
FDA criteria. Alexander had
measurable tumor - 30 of them and orthodox therapy had failed him.
Alexander was so sick that we chartered an
air ambulance. The first
time he had been to Burzynski’s clinic on September 21st Alexander
had joked with the nurses and watched TV and played.
Now, he was being brought in on a stretcher with 2 EMT’s, a respiratory
therapist and a pediatric nurse in attendance.
We started Burzynski’s therapy immediately.
The
nurses there worked very hard to get everything started as quickly as
possible.
Alexander loved life.
He loved his mommy and daddy and he wanted very much to stay with
us and grow up and go fishing and do all the things we promised him that
we would all do together. For
ten days, Alexander fought like hell to live.
Alexander died on January 31st, 1999 in his mommy’s
arms. Our son was only 2
½ years old.
After
Alexander was buried, Raphaele and I wanted to know what happened.
No one ever told us that the cancer could come back and kill Alexander
while he was on chemotherapy.
In fact, Alexander was only one quarter through a twelve-month
chemo protocol (comprised of induction and maintenance chemotherapy).
We began to research “leptomeningeal sarcoma” the cancer that had
grown so rapidly and killed him.
One of the abstracts that came back stunned us.
It was a study published in 1994 by Dr. Heideman, the oncologist
we had met at St. Judes Children’s Research Hospital.
It discussed the “leptomeningeal progression” of medulloblastoma
in thirteen children Alexander’s age who were given chemotherapy.
It explained how the cancers returned and spread in eleven of the
thirteen children within five months.
It mentioned that for some of the children the cancers grew in
the spines. Incredibly, this
abstract described in detail exactly what happened to our son.
But even more astounding, the abstract explained that this protocol
was terminated due to the poor performance of the drugs.
“Thirteen
young patients (under 36 months) with medulloblastoma were treated with
preirradiation multiagent chemotherapy…Two patients completed the scheduled
chemotherapy with residual disease and received delayed radiation therapy.
The remaining eleven patients had either local or leptomeningeal
progression during chemotherapy (median time to progression, 5 months)…Progressive
disease required early termination of chemotherapy in (these) eleven cases
…”
-
Gajjar A, Mulhern RK, Heideman
RL, Sanford RA, Douglass EC, Kovnar EH, Langston JA, JJ Jenkins, Kun LE.
Medulloblastoma in very young children: Outcome of definite craniospinal
irradiation following incomplete response to chemotherapy.
J Clin Oncol 1994 June; 12(6): 1212-1216
In
other words, the chemo worked so poorly that the oncologists actually
stopped the therapy. Unfortunately, the abstract did not name the specific chemo drugs these
children were given back in 1994.
“These couldn’t be the same drugs Alexander got. Alexander
got state-of-the-art chemo,” I said to Raphaele.
We were suspicious so we drove to the medical library at
UCLA to retrieve the full text of the article.
What we found sickened us.
The chemo that they had given these children was identical to the
chemo Hyder had administered to Alexander.
The four drugs were exactly the same - vincristine, cisplatin,
cyclophosphamide and etoposide.
The cancer that returned, metastasized and took Alexander’s life
did so in less than five months from the time when he had his surgeries.
Right on schedule. Just
like the other children in the article.
Alexander never had a chance.
The chemotherapy he had been given had proven its ineffectiveness
years before. How could Hyder
call these drugs the best available therapy?
On October 2, 1998, Hyder had written:
PLANS:
We will proceed with chemotherapy like CCG-9921A, as the best available
therapy.
How could this be the best therapy when these very same
drugs required “early termination” when they were used four years before?
After reading this article we wondered what else the oncologists
had not told us. We began
to read hundreds of abstracts and articles on pediatric brain cancer written
by oncologists for oncologists.
In the pages of their medical journals we were amazed to find that
they admitted to each other that chemotherapy is ineffective, extremely dangerous, toxic and carcinogenic
in the treatment of medulloblastoma and other aggressive pediatric brain
cancers in young children. If
any of this information had been made available to us, we would have hidden
Alexander so that the oncologists couldn’t force these useless poisons
into our son.
What
you are about to read will shock you.
It is a story of oncologists lying to parents and the public about
the efficacy of their therapy. The
quotations that follow come from abstracts and articles printed in their
peer reviewed medical journals that trace the use of these drugs in children
starting almost a quarter of a century ago.
It is organized in chronological order. Incredibly, all these drugs
are still being administered to children in hospitals throughout the country,
sometimes without the parents’ consent.
Alexander
was put on protocol CCG 9921 that consists of:
-
Vincristine
-
Cyclophosphamide
-
Cisplatin
(very similar to Carboplatin)
-
Etoposide
(also called VP 16)
(These
drugs are in bold to make them easier to follow.)
Vincristine
causes seizures:
In 1976, the oncologists experiment on children with a drug called vincristine.
Twenty-two years later, they would administer the same drug to
Alexander. Here in 1976 they
find that the drug causes seizures.
“Seventeen
children with clinical evidence of recurrent brain tumor were treated
with vincristine for 12 weeks…The
toxicity encountered was minimal except for seizures…”
-
Rosenstock JG, Evans AE, Schut
L: Response to vincristine of recurrent brain tumors in children. J
Neurosurg 1976 Aug; 45(2): 135-40.
Vincristine
does not eliminate cancer:
A year later, they tested vincristine
with two other chemotherapy drugs on more children.
The tumors returned in an average of 45 weeks with the chemo.
“Seventeen
patients with recurrent medulloblastoma were treated with a combination
of three drugs: procarbazine, CCNU and vincristine.
The median time to progression (the time when the tumor returned)
for all patients was 45 weeks.”
-
Crafts DC, Levin VA, Edwards
MS, Pischer TL, Wilson CB. Chemotherapy
of recurrent medulloblastoma with combined procarbazine, CCNU, and vincristine.
J Neurosurg 1978 Oct;
49(4): 589-92.
Response
rate has nothing to do with survival: In 1979, an article appeared that explained the significance
of a response rate, the benchmark used by all oncologists.
A patient “responds to therapy” when their tumor shrinks, but apparently
this has nothing to do with survival.
A tumor “responds,” that is shrinks a little, then quickly grows
and spreads. In this example,
five children with medulloblastoma (the same tumor as Alexander) “responded,”
but as of 1979, three had already died.
“Five children with recurrent medulloblastoma were
treated with Vincristine, BCNU,
Methotrexate and Dexamethasone.
All five patients responded to therapy.
Two of the patients are alive…”
- Duffner PK,
Cohen ME, Thomas PR, Sinks LF, Freeman AI.
Combination chemotherapy in recurrent medulloblastoma.
Cancer 1979 Jan; 43(1): 41-5.
Oncologists
experiment on children: As bizarre as it may seem to you or I, experimenting on children is permissible
behavior for pediatric oncologists. They have been allowed free access to our children’s bodies
with no accountability. There
are four reasons for this. First,
children with cancer are not allowed access to alternative cancer therapies.
A steady stream of new victims is assured because other treatment options
are outlawed. Second, the
rate of pediatric brain cancers continues to rise.
Third, if parents do not willingly give their children to
oncologists the child will be forcibly taken.
Fourth, after the child dies
there are no repercussions. The
oncologist’s compensation, reputation, position, career prospects, and
opportunities for advancement have no relationship to whether or not his
young patients live or die. Alexander’s
last three months were spent being injected with dozens of drugs, vomiting,
losing his hair, losing his eyesight, losing his ability to walk, losing
hearing in one ear, having radioactive substances injected into his body,
receiving blood transfusions, having GCSF injections shot into his legs
after each chemo session etc, etc.
Then the cancer came back with a vengeance and Alexander was given
a death sentence by his oncologist who washed his hands of us.
“Sorry, I’ll arrange for hospice care.”
And that was that. Don’t
call us we will call you.
In the name of science, oncologists have carried out hideous
experiments on children with brain cancer. In the experiment below, a new chemo regimen is tried out in
five children. The drugs
are so toxic that three die from the toxicity, one dies from cancer, and
the fifth is alive “but he is demented.”
“The
first five patients also received (chemotherapy) during radiotherapy. The toxicity in the five patients was very severe.
There were three toxic deaths, one death from cancer; one patient
survives disease free, but he is demented.” - Thomas
PR, Duffner PK, Cohen ME, Sinks LF, Tebbi C, Freeman AI.
Multimodality therapy for
medulloblastoma.
Cancer 1980 Feb 15; 45(4): 666-9.
Chemotherapy
does not affect survival: Two years later, vincristine
is part of another chemo experiment that is administered to more children
with brain cancer. The only
thing that changes is the body count.
The chemotherapy is still useless.
“The
data showed no improvement in the survival of such children when adjuvant
therapy (chemotherapy) was given.”
-
van Eys J, Chen T, Moore T, Cheek W, Sexauer C, Starling K.
Adjuvant chemotherapy for
medulloblastoma and ependymoma using iv vincristine, intrathecal methotrexate,
and intrathecal hydrocortisone: a Southwest Oncology Group Study.
Cancer Treat Rep 1981 Jul-Aug; 65(7-8): 681-4.
Vincristine
is toxic:
That same year, another experiment with children demonstrates that vincristine
is toxic to the nervous system, causes blindness, and could cause cardiorespiratory
arrest.
“Three
children with malignancies developed severe neurotoxicity, including transient
cortical blindness, following chemotherapy regimens. The only drug in common was vincristine…one
child had a cardiorespirartory arrest…”
-
Byrd RL, Rohrbaugh TM, Raney RB Jr, Norris DG.
Transient cortical blindness secondary to vincristine therapy in
childhood malignancies. Cancer
1981 Jan 1; 47(1): 37-40.
When
we found this article we were particularly saddened. We remembered how, after getting vincristine, Alexander’s eyes would burn and bother him.
His mommy would pat his eyelids with a cool damp cloth to help
ease the pain. It helped
a little but his sight was terribly impaired and he would collide into
walls crashing his head with a “bang” you could hear throughout the apartment.
Raphaele and I asked his oncologist what was going on and he assured
us that the drugs had nothing to do with Alexander’s deteriorating eyesight.
Chemotherapy
does not affect survival: That same year, another experiment demonstrates that vincristine
and other chemo drugs do not prolong survival in children with medulloblastoma.
“Survival
with the chemotherapy used in this study (procarbazine, vincristine, and prednisone) was not superior to the survival of children
who received craniospinal irradiation only.”
-
Seiler RW, Bernasconi S, Berchtold W, Feldges A, Imbach P,
Luthi A, Pluss HJ, Vassella F, Wyss M, Wagner HP.
Adjuvant chemotherapy with procarbazine, vincristine and prednisone
for medulloblastomas. A preliminary report.
Helv Paediatr Acta 1981 Jul; 36(3): 249-54.
Chemotherapy
does not stop the cancer from spreading: It’s 1981 and oncologists admit that they are on the
wrong track. They state that
chemo doesn’t stop brain cancer from spreading throughout the brain and
spine.
“Cerebrospinal
fluid dissemination of medulloblastoma occurs despite adequate systemic
chemotherapy…”
-
Edwards MS, Levin VA, Seager ML, Wilson CB.
Intrathecal chemotherapy for leptomeningeal dissemination of medulloblastoma. Childs Brain 1981;
8(6): 444-51.
Vincristine
destroys eyesight:
The fact that oncologists were already warned that vincristine
was dangerous to a child’s eyesight didn’t seem to make an impression.
It didn’t for Alexander’s oncologist in 1998.
This article is written about another child who nearly goes blind
from vincristine in 1982.
“Bilateral
optic atrophy developed in a 15 year old patient receiving radiation therapy
and weekly vincristine for
medulloblastoma…Visual loss occurring in a patient receiving vincristine
should alert the physician to the possibility that the process is drug
related.”
- Shurin SB,
Rekate HL, Annable W. Optic
atrophy induced by vincritstine.
Pediatrics 1982 Aug;
70(2): 288-91.
Vincristine
can kill:
In the next article, the oncologists discuss what happened when they administered
vincristine by accident. They
undertook “detailed clinical observations” for seventeen days, the amount
of time it took for the child to die after getting this chemo.
“A
case is described of accidental intrathecal administration of vincristine,
with detailed clinical observations over a 17 day period.
The toxicity…resulted in death.
The onset was characterized by opisthotonos, followed by ascending
paralysis and finally bulbar and cerebral involvement.” -
Manelis J, Freudlich E, Ezekiel
E, Doron J. Accidental intrathecal
vincristine administration. Report of a case.
J Neurol 1982; 228(3):
209-13.
Cisplatin
destroys hearing and leads to neurologic deterioration: In 1983, the danger of another chemo drug, cisplatin,
is discovered, but only after trying it out on children.
This is another drug the oncologists would inject into Alexander
fifteen years later.
“Six
children received cisplatin
for recurrent brain tumor. Five
of the six children had evidence of significant hearing loss after only
one cycle of treatment. Two (children)…developed profound deterioration in neurologic status within
72 hours after infusion.”
- Granowetter L, Rosenstock JG, Packer RJ: Enhanced
cis-platinum neurotoxity in pediatric patients with brain tumors. J
Neurooncol 1983; 1(4):293-7.
Cyclophosphamide
does not affect survival:
That same year, another chemotherapy drug called cyclophosphamide
is tried out on children. It
does not effect survival. This
is the third of four drugs they would administer to Alexander many years
later. This article admits
that even if a drug is “active” and temporarily shrinks a tumor, it does
not prolong life. This admission
echoes the one from 1979 in which a response rate has nothing to do with
survival. The oncologists
are admitting that an “active” chemo drug that creates a “response” (temporarily
shrinks the tumor) has no “important effect on survival.”
Fourteen
children with brain tumors were given cyclophosphamide.
“…Although cyclophosphamide
alone was an active agent in this context, these treatment regimens did
not have an important effect on survival.”
-
Allen JC, Helson L, Jereb B. Preradiation chemotherapy for newly diagnosed childhood brain
tumors. A modified Phase II trial.
Cancer 1983 Dec 1; 52(11):
2001-6.
Therapy
causes retardation: In this next experiment, chemo together with radiation were shown to
be sufficiently toxic to cause retardation in children.
“Ten
children with posterior fossa tumors (i.e. medulloblastoma) treated with
radiation and chemotherapy received intellectual evaluations…of the ten
children evaluated, all had either dementia, learning disabilities or
evidence of intellectual retardation.”
-
Duffner PK, Cohen ME, Thomas
P. Late effects of treatment
on the intelligence of children with posterior fossa tumors. Cancer 1983 Jan 15;
51(2): 233-7.
Vincristine
kills again:
Here is another example of accidentally giving a child too much vincristine. In this case, the oncologists watched this boy die over the
course of 36 days. The autopsy
found that his brain had become necrotic (dead).
“A
case of fatal myeloencephalopathy (inflammation of the spinal chord and
brain) secondary to accidental intrathecal administration of vincristine
is reported in a 16 year old boy.
He underwent a progressive ascending chemical meningoencephalitis
leading to coma, and died 36 days after the injection.
At autopsy, all regions of the brain that had been in direct contact
with the cerebrospinal fluid were necrotic (dead).”
-Williams ME, Walker
AN, Bracikowski JP, Garner L, Wilson KD, Carpenter JT. Ascending myeloencephalopathy due to intrathecal vincristine
sulfate. A fatal chemotherapeutic error.
Cancer 1983 Jun 1; 51(11):
2041-7.
Oncologists
experiment on children’s ovaries & testes using chemotherapy:
As we have already seen, the oncologists have been allowed to experiment
on children without fear of ever being held accountable.
In this “study” the oncologists wondered what happened to children’s
gonads (ovaries and testes) after they were administered chemotherapy.
After the children were already given the drugs, the oncologists
examined them. Not surprisingly,
the children who had been administered chemotherapy had “evidence of gonadal
damage.”
“Gonadal
function was studied in two groups of children previously treated for
medulloblastoma…In group one, but not in group two, the children also
received adjuvant chemotherapy (BCNU or CCNU plus vincristine
in four and procarbazine in three patients).
The nine children in group one showed clinical and biochemical
evidence of gonadal damage… In
group two, each child…(developed) normally…We conclude that nitrosoureas
(chemotherapy) was responsible for the gonadal damage…”
-
Ahmed SR, Shalet SM, Campbell
RH, Deakin DP. Primary gonadal
damage following treatment of brain tumors in childhood.
J Pediatr 1983 Oct; 103(4): 562-5.
Oncologists
may not count dead children in their statistics:
The next year, several chemo drugs including vincristine,
and etoposide, are administered
to children in another chemo experiment.
Etoposide is the fourth
and last drug in the chemo cocktail they would administer to Alexander
fourteen years later. Predictably,
in this experiment survival isn’t appreciably affected.
But this article is important for another reason.
Most chemo experiments mention that they started with a certain
number of children but only a much smaller number of children were “evaluable.”
We always wondered what “evaluable” meant and what happened to
those missing children. Now,
the question is answered. According
to the article there were four children who “were not evaluable due to
early death.” So the children who
are not evaluable are the ones who died while being treated.
These “non-evaluable” children are excluded from their final statistics.
The oncologists’ reasoning is that
if a child has not had the “benefit” of the entire chemo regimen
(i.e. 12 months worth) then the regimen should not be penalized by counting
children who didn’t make it all the way through.
Such bookkeeping provides a convenient method to inflate the response
rate (the number of children who had their tumors temporarily shrink).
For example, if 5 children responded out of 20 the response rate
is 25%. But if only 10 of
the 20 children are evaluable (because the other 10 died before the therapy
was completed) then the response rate has suddenly increased to 50% (5
responders out of 10 evaluable patients equals 50%). We have found this type of clever bookkeeping used in other
cancer experiments involving both children and adults.
It explains how the statistics can be easily inflated.
“Twenty-two
consecutive patients with recurrent malignant brain tumors after radiation
therapy and systemic combination chemotherapy with BCNU and vincristine, four of whom were not evaluable due to early death, were
treated with etoposide.
Response was observed in three of 18 (17%) evaluable patients…Overall
median survival from the start of etoposide
was 4.5 months.”
-
Tirelli U, D’Incalci M, Canetta R, Tumolo S, Franchin G, Veronesi A, Galligioni
E, Trovo MG, Rossi C, Grigoletto E.
Etoposide (VP-16-213) in malignant brain tumors: a phase II study.
J Clin Oncol 1984 May; 2(5): 432-7.
Oncologists
admit that chemo is ineffective: A year later, after trying out all the various chemo
drugs on children, a group of pediatric oncologists admit that the role
of chemotherapy is “unclear, ” that “responses are generally transient,”
and “virtually no cures are reported.”
They also admit again that an “active” drug (a drug that may temporarily
shrink a tumor) has no relationship to a cure.
Medulloblastoma
is the most common primary tumor of the central nervous system in childhood…The
role of adjuvant chemotherapy is unclear…Agents that have demonstrated
activity include vincristine,
cyclophosphamide, cisplatin,
methotrexate…However, responses are generally transient and virtually
no cures are reported.”
-
Friedman HS, Schold SC Jr. Rational approaches to the chemotherapy of medulloblastoma.
Neurol Clin 1985 Nov; 3(4):
843-53.
Oncologists
admit that chemo and radiation are toxic and ineffective:
Another group of oncologists go on record with the admission that conventional
therapy (chemotherapy and radiation) produces “poor results,” “severe
neurotoxicity” and is “not only toxic but inadequate.”
“(Conventional)
treatment has been least effective in very young children with brain tumors…Since
standard treatment has produced both poor results and severe neurotoxicity…Current
therapy of malignant brain tumors of infancy (children under 36 months)
in not only toxic, but inadequate.”
- Duffner PK, Cohen
ME. Treatment of brain tumors in babies and very young children.
Pediatr neurosci 1985-86;
12(6): 304-10.
Oncologists
admit that chemo is ineffective and increases the risk of infection:
“The
(survival) rate was not improved by the chemotherapy program.
An increased risk of infection was associated with the chemotherapy.”
- Jenkin
RD, Boesel C, Ertel I, Evans A, Hittle R, Ortega J, Sposto R, Wara W,
Wilson C, Anderson J, et al. Brain-stem
tumors in childhood: a prospective randomized trial of irradiation with
and without adjuvant CCNU, VCR, and prednisone. A report of the Children’s
Cancer Study Group. J Neurosurg 1987 Feb; 66(2): 227-33.
Oncologists
admit that chemo causes cancer: In this article several pediatric oncologists admit
that the conventional treatment for cancer (chemo and radiation) will
actually cause cancer.
“There
is increasing evidence that children with cancer…are at increased risk
for development of secondary central nervous system tumors; possibly due,
in part, to previous treatment.”
- Packer RJ,
Meadows AT, Rorke LB, Goldwein JL, D’Angio G.
Long-term sequelae of cancer treatment on the central nervous system
in childhood. Med Pediatr Oncol 1987;
15(5): 241-53.
Example
of chemo causing cancer: Another medical article demonstrates this fact.
Here a boy with medulloblastoma gets a glioblastoma multiforme
as a result of his treatment (chemo and radiation).
Although the abstract fails to mention it, glioblastoma is the
most dangerous brain tumor known and is rapidly and universally fatal.
“The
patient was operated on for a cerebellar medulloblastoma at the age of
13 years. Postoperative treatment
included irradiation and chemotherapy.
Six years later, a glioblastoma multiforme was found at the original
site of the medulloblastoma…(earlier) treatment is considered the likely
cause for the later tumor development.”
-
Schmidbauer M, Budka H, Bruckner
R, Vorkapic P. Glioblastoma
developing at the site of a cerebellar medulloblastoma treated 6 years
earlier. Case report. J
Neurosurg 1987 Dec; 67(6): 915-8.
The fact
that chemotherapy actually causes cancer should be of no surprise to the
oncologists. The chemotherapy
they gave Alexander and thousands of other children is listed as “Known
Human Carcinogens” by the National Institute of Health, the National Cancer
Institute and the FDA. In
fact, cyclophosphamide was
listed as a “Known Human Carcinogen” by the First Annual Report on Carcinogens
published by the U.S. Department of Health and Human Services in 1980.
In addition, there are four other chemotherapy compounds on that
list.
(See http://ntp-server.niehs.nih.gov/htdocs/8_RoC/Known_list.html.)
Furthermore,
the World Health Organization’s International Agency for Research on Cancer
lists ten chemotherapy agents including cyclophosphamide
and all alkylating agents as “Materials known to be carcinogenic to humans.”
(See http://www.science.tamu.edu/safety/carcinogens.html.)
It is
hard to believe that oncologists would be injecting known human carcinogens
into children with cancer. But, that is exactly what they are doing.
They should not feign surprise when the children begin developing
secondary cancers. This is
what happened to Alexander. His
first cancer was medulloblastoma.
After three months of chemotherapy the cancer returned as 30 separate
tumors. At that point the
doctors called it “leptomeningeal
sarcoma.”
Let’s
summarize. It’s 1987 and
chemotherapy has been used to treat children with aggressive brain tumors
for at least eleven years. In
that time there have been “virtually no cures,” a tremendous record of
toxicity including secondary cancers, and admissions by numerous oncologists
that they are on the wrong track.
Let us jump ahead a few years to 1990 to see what happens next.
Chemo
is still in use in pediatric brain tumors: It is 1990 and the oncologists are still experimenting
on children using exactly the same chemotherapy.
Here they are busily administering chemo to roughly half of 286
children. The experiment
proves once again that chemo provides no benefit.
“Two
hundred and eighty-six patients with medulloblastoma from 46 centers in
15 countries were treated…All patients were treated by craniospinal irradiation. (Approximately half) were randomly allocated to receive adjuvant
chemotherapy…late relapses have occurred…and the difference between the
two groups (those who received chemo and those who did not) has been lost.”
- Tait
DM, Thornton-Jones H, Bloom HJ, Lemerle J, Morris-Jones P.
Adjuvant chemotherapy for medulloblastoma: the first multi-centre
control trial of the International Society of Paediatric Oncology (SIOP
I). Eur
J Cancer 1990 Apr; 26(4): 464-9.
Does
chemo benefit anyone? One oncologist admits that he doesn’t know which children will benefit
from chemotherapy.
“It
remains to be determined which…patients are most likely to benefit from
chemotherapy.”
-
Packer RJ.
Chemotherapy for medulloblastoma/primitive neuroectodermal tumors
of the posterior fossa.
Ann Neurol 1990 Dec; 28(6): 823-8.
Chemo
and radiation do not cure: Oncologists go on record
stating that a “cure” for medulloblastoma is currently “unknown.”
“It
remains unknown, however, whether the patient with a medulloblastoma is
ever cured.”
-
Sutton LN, Packer RJ, Schut L. Medulloblastomas.
Neurosurg Clin N Am 1990
Jan; 1(1): 97-109.
Chemo
is toxic and ineffective: Other oncologists admit that chemotherapy provides a “poor quality of
life” and “minimal” benefit.
“The
prognosis of childhood brain tumors is severe because of a high tumor-related
mortality and a poor quality of life…Till now, the benefit due to chemotherapy
in the treatment of these tumors has been minimal…”
-
Kalifa C, Jouvet P. [Current
indications of chemotherapy in the treatment of malignant brain tumors
in children]. [Article in
French] Bull Cancer 1990; 77(12):
1169-74.
Chemo
leads to destruction of hearing, infertility and secondary cancers:
You may recall that oncologists knew in 1983 that the chemo drug cisplatin destroyed a child’s hearing. But eight years later they “discover” this again.
You may also recall that they knew chemo caused cancers in children
in 1987 but four years later they are still using it with the same results.
Complications
of chemotherapy include,“permanent hearing impairment secondary to cisplatin,
infertility and an increased risk of second primary neoplasms.”
-
Allen JC: Complications of chemotherapy
in patients with brain and spinal cord tumors. Pediatr
Neurosurg 1991-92; 17(4): 218-24.
Response
rate has nothing to do with survival: Similar to the article written in 1979, the article
below reveals that a “response” to chemotherapy has little to do with
survival. Here all six children
“responded” and all six children died.
“Various
chemotherapeutic agents are transiently effective in recurrent PNET/Medulloblastoma,
but long-lasting responses are rarely attainable.
Seven patients - ages 2-18 years - (were treated with) lomustine,
cisplatin and vincristine. Six of six
evaluable patients responded to chemotherapy… All six patients have subsequently
died…”
- Lefkowitz IB,
Packer RJ, Siegel KR, Sutton LN, Schut L, Evans AE.
Results of treatment of children with recurrent medulloblastoma/primitive
neuroectodermal tumors with lomustine, cisplatin, and vincristine.
Cancer 1990 Feb 1; 65(3):
412-7.
Chemo
causes cancer:
Chemotherapy has been known to cause cancer for many years but it is still
being administered. Not surprisingly,
more children are getting secondary cancers as a “treatment related complication.”
“Leukemia
of mixed lineage, was diagnosed in a 6.5 year old boy with a history of
medulloblastoma...Therapy has included radiation and chemotherapy…leukemia
is a treatment related complication for patients with past brain tumors…”
-
Blatt J, Penchansky L, Phebus
C, Horn M. Leukemia in a
child with a history of medulloblastoma.
Pediatr Hematol Oncol
1991 Jan-Mar; 8(1): 77-82.
Oncologists
wonder why cyclophosphamide
doesn’t work:
Now it is 1992 but nothing has changed.
After admitting that chemotherapy is toxic and ineffective, these
same oncologists are still injecting the same drugs into new victims.
In this article, the oncologists wonder why cyclophosphamide
does not work. Their conclusion? Medulloblastoma is resistant to cyclophosphamide.
“Mechanisms
to cyclophosphamide (4-HC)
were studied…Multiple distinct mechanisms of resistance were demonstrated.”
-
Friedman HS, Colvin OM, Kaufmann
SH, Ludeman SM, Bullock N, Bigner DD, Griffith OW.
Cyclophosphamide resistance in medulloblastoma.
Cancer Res 1992 Oct 1; 52(19): 5373-8.
You
may recall that in the past, cyclophosphamide
was already shown not to affect survival.
But for some reason the oncologists kept prescribing it and countless
children have been given the drug anyway.
You may recall this statement from 1983:
“…Although cyclophosphamide
alone was an active agent in this context, these treatment regimens did
not have an important effect on survival.”
-
Allen JC, Helson L, Jereb B. Preradiation chemotherapy for newly diagnosed childhood brain
tumors. A modified Phase II trial.
Cancer 1983 Dec 1; 52(11):
2001-6.
As
we have seen, the oncologists have admitted that chemo is toxic, provides
poor quality of life and does not prolong survival for children with brain
tumors. Yet, they continue
to use various means to force and coerce parents to allow them to inject
these poisons into the veins of innocent children.
The
chemo is not the problem, it’s the children who are at fault:
It’s 1993 and the oncologists have a new strategy - blame the victim. The drugs are exactly the same.
Now, the problem isn’t that the chemotherapy is worthless.
The problem is the children.
They just have a poor prognosis.
“Children
younger than 5 years who have PNET have a poor prognosis.”
- Goldwein JW, Radcliffe
J, Packer RJ, Sutton LN, Lange B, Rorke LB, D’Angio GJ.
Results of a pilot study of low-dose craniospinal radiation therapy
plus chemotherapy for children younger than 5 years with primitive neuroectodermal
tumors. Cancer 1993 Apr 15; 71(8): 2647-52.
Other
oncologists agree:
Among
patients with malignant brain tumors, infants and very young children
have the worst prognosis and the most severe treatment-related neurotoxic
effects.”
-
Duffner PK, Horowitz ME, Krischer
JP, Friedman HS, Burger PC, Cohen ME, Sanford RA, Mulhern RK, James HE,
Freeman CR, et al. Postoperative
chemotherapy and delayed radiation in children less than three years of
age with malignant brain tumors.
N Engl J Med 1993 Jun 17; 328(24): 1725-31.
Chemo
is the problem: But some oncologists are uncomfortable with this new “blame it on the
victim” mentality and are still willing to admit that the problem isn’t
the children, it’s the chemotherapy.
“…the absolute benefit of chemotherapy for the treatment of
medulloblastoma in childhood is, as yet, not proven.”
-
Attard-Montalto S, Plowman N,
Breatnach F, Saha V, Eden OB. Is
there a danger in delaying radiotherapy in childhood medulloblastoma?
Br J Radiol 1993 Sep; 66(789):
807-13.
Chemo
and radiation can kill: But chemotherapy isn’t only ineffective. It’s also dangerous.
This little girl was killed by the combination of radiation and
chemo that the oncologists gave her.
The treatment caused her brain to become “necrotic” or dead.
A
three year old girl received (radiation and chemotherapy for a recurrence)…After
two months of chemotherapy, central nervous system toxicity progressed
rapidly from ataxia to paraplegia to quadriplegia to central respiratory
failure. Radiographic scans
and autopsy material revealed brain stem necrosis.”
-
Watterson J, Simonton SC, Rorke
LB, Packer RJ, Kim TH, Spiegel RH, Priest JR.
Fatal brain stem necrosis after standard posterior fossa raidation
and aggressive chemotherapy for metastic medulloblastoma.
Cancer 1993 Jun 15; 71(12):
4111-7.
It
is 1994 and after almost 20 years of admitting that chemo does not work
in pediatric brain tumors the oncologists are still administering the
same drugs. Predictably the
children react in the same way - they relapse and die.
More
chemo failure:
Here they gave children a chemo cocktail containing three of the four
drugs they would later give Alexander.
Tumors returned in six months.
Children
(with PNET’s and ependymomas) were treated with a CCG (chemotherapy) protocol…The
median time to progression (return of the tumor) was 6 months.”
-
Geyer JR, Zeltzer PM, Boyett
JM, Rorke LB, Stanley P, Albright AL, Wisoff JH, Milstein JM, Allen JC,
Finlay JL, et al. Survival
of infants with primitive neuroectodermal tumors or malignant ependymomas
of the CNS treated with eight drugs in 1 day: a report from the Childrens
Cancer Group.
J Clin Oncol 1994 Aug; 12(8): 1607-15.
Tumors
return in seven months: In this chemo experiment they gave children the exact same four drugs
they would give Alexander four years later.
For most of the children, the tumors returned in seven months.
“…Responses
were short lived, with two patients relapsing while still receiving chemotherapy.
Three of four very young children relapsed within 7 months of completing
chemotherapy…”
-
Gaze MN, Smith DB, Rampling RP,
Simpson E, Barrett A. Combination
chemotherapy for primitive neuroectodermal and other malignant brain tumours.
Clin Oncol (R Coll Radiol)
1994; 6(2): 110-5
The
exact same drugs they would give Alexander in 1998 are again proven ineffective:
Then there is the study that started our research. In this experiment at St. Judes Children’s Research Hospital,
cyclophosphamide, vincristine,
etoposide and cisplatin
were administered to thirteen children.
These children were the exact same age and had the exact same tumor
as Alexander. In this study these chemo drugs worked so poorly that the
cancers returned in an average of five months.
As a result, the experiment “required early termination.”
The majority of the children had “leptomeningeal progression” -
the cancers spread throughout their brains and spines.
But this would not stop oncologists from continuing to use these
exact same useless drugs on Alexander and other children for years to
come. In fact, these drugs
are being forcibly used on children even now as you read this.
“Thirteen
young patients (under 36 months) with medulloblastoma were treated with
preirradiation multiagent chemotherapy…Two patients completed the scheduled
chemotherapy with residual disease and received delayed radiation therapy.
The remaining eleven patients had either local or leptomeningeal
progression during chemotherapy (median time to progression, 5 months)…Progressive
disease required early termination of chemotherapy in (these) eleven cases
…”
-
Gajjar A, Mulhern RK, Heideman
RL, Sanford RA, Douglass EC, Kovnar EH, Langston JA, JJ Jenkins, Kun LE.
Medulloblastoma in very young children: Outcome of definite craniospinal
irradiation following incomplete response to chemotherapy.
J Clin Oncol 1994 June; 12(6): 1212-1216
Note
that in these last three experiments the children’s cancers returned in
an average of 6, 7 and 5 months after the original tumor was surgically
removed. Raphaele and I wondered
how this figure of 5-7 months compared to the time to recurrence in the
era before chemotherapy and radiation.
In other words, when surgery was used by itself, did the tumors
return faster, slower or at the same rate?
The answer to this question would indicate if chemo does anything
to slow the return of the cancer.
To
get the answer we read the medical books and articles written by Drs.
Harvey Cushing and Percival Bailey.
These were the first neurosurgeons in the United States who actually
“discovered” and named medulloblastoma almost eighty years ago.
During the first quarter of the twentieth century these early neurosurgeons
removed medulloblastomas and other brain tumors at the Surgical Clinic
of the Peter Bent Brigham Hospital in Boston. It took longer to diagnose in those days because they didn’t
have MRI or CT machines, but according to their data, children lived an
average of eleven months from when they were first diagnosed. These were children whose only therapy was surgery - there
was no chemotherapy or radiation used.
(Some patients were treated post-surgically with radium or roentgen-rays
but these children were not counted to arrive at the eleven month average.)
Furthermore, most of these patients did not have their tumors completely
removed because of the lack of sophisticated surgical technology.
Later, when the tumor recurred, Cushing and Bailey would simply
operate to remove it a second or even third time.
Cushing and Bailey wrote:
In
one case, the patient had an extraordinarily long survival period, twenty-one
months, from the time of the first operation, which amounted merely to
a decompression. At two subsequent
operations, the tumor, which the decompression had permitted to attain
an enormous size, was radically extirpated…It will be seen also that the
next three patients operated on (cases 11, 12 and 13) had survival periods
of nine, ten and sixteen months, respectively…”
-
Bailey P, Cushing H. Medulloblastoma
Cerebelli: A Common type of Midcerebellar Glioma of Childhood.
Archives of Neurology and Psychiatry. Volume 14, 1925; 192-224
Today,
according to the oncologists, children on chemotherapy have their brain
cancers return in an average of 5-7 months. With chemo, Alexander lived
a little more than five months from when he was diagnosed and he had all
his tumor removed. This meant
that in the days when brain surgery was just invented and chemotherapy
didn’t yet exist, many children with medulloblastoma lived longer than
they do today. But today, we have superior surgical technique and the extent
of tumor removal is greater. Incredibly,
the children operated on 70 and 80 years ago already beat Alexander in
terms of survival, but if these kids had had the benefit of a modern surgery
they might have lived even longer.
Who knows how long these children would have lived if they had
been given a modern operation?
This
suggested that chemotherapy was shortening children’s lives, not lengthening
them!
Response
rate is entirely subjective: This next article raised the curtain on the “science”
behind these chemo experiments.
As we have learned, when a study says that a child responded this
means that the tumor shrunk temporarily.
This is considered a success for the oncologist.
Even when the children die, the oncologists focus on the response
rate. The tumor responded,
returns with a vengeance and kills the child.
Yes, but, there was a response!
A point in favor of chemo.
If oncologists focused on duration and quality of life there would
be no role for chemotherapy whatsoever.
But in next article we see that response rates themselves are doubtful.
This quote is taken from an article published by Memorial Sloan-Kettering
Cancer Institute. In it,
an “institutional review” documents a 33% response rate.
However, when the exact same patients are seen by the “central
review” the response rate drops to 18%.
We now understand that a “response rate” lies in the eyes of the
beholder. This suggests that
an oncologist can find a response rate where none exists:
“One
hundred and thirty children less than 21 years of age with newly-diagnosed
high-grade astrocytoma were treated with ‘eight-drugs-in-one-day’ chemotherapy…Of
79 patients with evaluable post-operative residual tumor on CT or MRI
scans 26 (33%) were determined on institutional evaluation to have had
an objective response. However,
central review of scans documented responses on only 14 (18%)…The differences
in response rates reported by institutional and central review highlight
the difficulties inherent in assessing response to brain tumor therapy.”
-
Finlay JL, Geyer JR, Turski PA, Yates AJ, Boyett JM, Allen JC, Packer
RJ. Pre-irradiation chemotherapy in children with high-grade astrocytoma:
tumor response to two cycles of the “8-drugs-in-1-day” regimen.
A Childrens Cancer Group study, CCG-945.
J Neurooncol 1994; 21(3):255-65.
Here
we are in 1995 and more children are given the same toxic and worthless
drugs with the same results.
“Chemotherapy
consisted of vincristine, procarbazine
and methotrexate…No benefit for the receipt of pre-radiation chemotherapy
could be demonstrated...”
-
Bailey CC, Gnekow A, Wellek
S, Jones M, Round C, Brown J, Phillips A, Neidhards MK.
Prospective randomised trail of chemotherapy given before radiotherapy
in childhood medulloblastoma. International Society of Paediatric Oncology
(SIOP) and the (German) Society of Paediatric Oncology (GPO): SIOP II.
Med Pediatr Oncol 1995 Sep; 25(3): 166-78.
Same
drugs, more deaths: In the article, the oncologists admit that all the children died and
that chemotherapy “was neither effective in controlling the tumor (pineoblastoma)
at the primary (original) site” nor in preventing it from spreading.
“Chemotherapy
consisted of two 28-day cycles of cyclophosphamide
plus vincristine, followed
by one 28-day cycle of cisplatin
plus etoposide…All children
ultimately failed chemotherapy (2 months-11 months)…All children died…This
chemotherapy regimen was neither effective in controlling the tumor in
the primary site nor in treating or preventing leptomeningeal spread.”
-
Duffner PK, Cohen ME, Sanford
RA, Horowitz ME, Krischer JP, Burger PC, Friedman HS, Kun LE: Lack of
efficacy of postoperative chemotherapy and delayed radiation in very young
children with pineoblastoma. Pediatric Oncology Group. Med
Pediatr Oncol 1995 Jul;25(1):38-44.
The
children die because the therapy is ineffective:
Oncologists deduce that the children’s deaths are due to the cancer’s
resistance to chemotherapy, specifically a chemo drug called cyclophosphamide.
Many
clinical trials “noted that many children with newly diagnosed or recurrent
medulloblastoma frequently displayed initial or subsequent resistance
to cyclophosphamide…Development of drug resistance was invariably the
harbinger of…death of the patient.”
-
Friedman HS, Bigner SH, Bigner DD.
Cyclophosphamide therapy of medulloblastoma: from the laboratory
to the clinic and back again (and again and again). J Neurooncol 1995; 24(1): 103-8.
If
you recall the papers quoted above (1983 and 1992), you will note that
oncologists had already admitted that cyclophosphamide
does not work in medulloblastoma.
This pattern of using a chemo drug, admitting it is ineffective,
and then continuing to use it on children is incomprehensible.
Chemo
is toxic and ineffective: Predictably, the next year it is still the same drugs and the same horrific
results. In fact, these are
the exact same four drugs they would give Alexander two years later
“Twenty
eight children with a variety of malignant brain tumors have received
the regimen, which contains carboplatin,
vincristine, cyclophosphamide,
methotrexate, and cisplatin.
The treatment is toxic…all but three children eventually required
radiation…”
-
Lashford LS, Campbell RH, Gattamaneni
HR, Robinson K, Walker D, Bailey C.
An intensive multiagent chemotherapy regimen for brain tumours
occurring in very young children.
Arch Dis Child 1996 Mar; 74(3): 219-23.
Cisplatin
still destroys hearing: Remember Cisplatin and hearing
loss?
“Cisplatin induced hearing loss…may progress insidiously and rapidly.”
-
Ilveskoski I, Saarinen UM, Wiklund
T, Perkkio M, Salmi TT, Lanning M, Makipernaa A, Pihko H.
Ototoxicity in children with malignant brain tumors treated with
the “8 in 1” chemotherapy protocol.
Med Pediatr Oncol 1996
Jul; 27(1): 26-31.
That
was written in 1996, do you recall this from 1983?
“Six
children received cisplatin
for recurrent brain tumor. “Five
of the six children had evidence of significant hearing loss after only
one cycle of treatment.”
-
Granowetter L, Rosenstock JG, Packer RJ: Enhanced cis-platinum
neurotoxity in pediatric patients with brain tumors. J
Neurooncol 1983; 1(4):293-7.
The inexplicable use of dangerous drugs that oncologists
admit are ineffective continues.
For these oncologists, it seems nothing has changed in thirteen
years except more children getting injured by drugs that are supposed
to help them. Each child
represents income to the oncologist and profits to the drug company that
sells the chemotherapy. Of
course, none of these victims are the oncologist’s children.
The
outcome with conventional therapy “remains poor”:
Oncologists are not shy about admitting to each other that what they are
doing does not work.
“The
outcome for the majority of children with malignant brain tumors remains
poor, despite surgery, irradiation and conventional chemotherapy.”
-
Finlay JL.
The role of high-dose chemotherapy and stem cell rescue in the
treatment of malignant brain tumors.
Bone Marrow Transplant
1996 Dec; 18 Suppl 3:S1-5
Chemo
remains “unproven”: Oncologists continue to question the value of chemo but they keep right
on prescribing it
“…the
value of preradiation chemotherapy remains unproven.”
-
Packer RJ. Brain tumors in children.
Curr Opin Pediatr 1996 Dec; 8(6): 549-57.
Chemo
does not work:
The same toxic and ineffective drugs.
The same results. More
tortured and dead children. More
grieving parents.
“We
treated 25 children with nondisseminated medulloblastoma…with carboplatin
and vincristine…Our experience
with this adjuvant chemotherapy regimen with carboplatin
and vincristine, as used by
us, does not encourage its adoption in future clinical trials.”
- Bergman I, Jakacki
RI, Heller G, Finlay J. Treatment of standard risk medulloblastoma with
craniospinal irradiation, carboplatin, and vincristine. Med Pediatr Oncol
1997 Dec; 29(6): 563-567.
Vincristine
causes neurotoxicity:
The oncologists seem surprised that vincristine
causes brain death:
“We
describe a very unusual case of fulminant (sudden and severe) neuropathy
in a child who was previously exposed to vincristine.
The clinical picture resembled brain death…”
-
Bakshi N, Maselli RA, Gospe
SM Jr, Ellis WG, McDonald C, Mandler RN.
Fulminant demyelinating neuropathy mimicking cerebral death.
Muscle Nerve 1997 Dec;
20(12): 1595-7.
That
was written in 1997. Do you
recall these comments written in 1981, sixteen years earlier?
“Three
children with malignancies developed severe neurotoxicity, including transient
cortical blindness, following chemotherapy regimens. The only drug in common was vincristine…one
child had a cardiorespirartory arrest…”
-
Byrd RL, Rohrbaugh TM, Raney RB Jr, Norris DG.
Transient cortical blindness secondary to vincristine therapy in
childhood malignancies. Cancer
1981 Jan 1; 47(1): 37-40.
Chemo
in children is a big experiment: Here in 1997 is an outrageous admission.
The oncologists confess that although they have been using these
chemo drugs to treat brain tumors for over twenty years they have
no idea how much of the drug is delivered to the brain.
“Although
both cyclophosphamide and ifosfamide
are used in the treatment of central nervous system tumors, little is
known about the concentration of either drug or their metabolites in the
cerebrospinal fluid of children.”
-
Yule SM, Price L, Pearson AD,
Boddy AV. Cyclophosphamide
and ifosfamide metabolites in the cerebrospinal fluid of children.
Clin Cancer Res 1997 Nov; 3(11): 1985-92.
Chemo
still causes cancer: In this article published by the National Cancer Institute, the oncologists
admit that a child has a 5.4-fold excess chance of getting another cancer
after being treated with conventional therapy.
Using
conventional therapy, “overall, there was a 5.4-fold excess of second
neoplasms (cancers)…Significantly elevated risks were seen for cancers
of the salivary glands, cervix uteri, brain and CNS, thyroid gland, and
acute lymphoblastic leukemia.”
-
Goldstein AM, Yuen J, Tucker
MA. Second cancers after
medulloblastoma: population-based results from the United States and Sweden.
Cancer Causes Control
1997 Nov; 8(6):865-71.
With
orthodox treatment, medulloblastoma is fatal: Here’s a statement from oncologists at Harvard
Medical School that with only rare exceptions, recurrent medulloblastoma
is “universally fatal.”
“Recurrent
medulloblastoma has long been considered universally fatal.
In spite of attempts to improve its treatment, only rarely have
long term survivors been documented in the world’s medical literature.”
-
Balter-Seri J, Mor C, Shuper
A, Zaizov R, Cohen IJ. Cure
of recurrent medulloblastoma: the contribution of surgical resection at
relapse. Cancer
1997 Mar 15; 79(6): 124-7.
Chemo
is still ineffective: In this next chemo experiment from St. Jude Children’s Research Hospital,
seventeen of twenty-three children with medulloblastoma had their cancers
spread while getting chemo. This
particular oncologist had used the same drugs three years before with
such poor results that he pulled the plug on that experiment.
But here he is using the same drugs again on a new group of children.
“Chemotherapy regimen depended on protocol, but usually
included cisplatin or carboplatin
and etoposide, +/- cyclophosphamide
and vincristine…(There were
23 patients under 3 years old) seventeen patients
progressed (had the tumor return) during chemotherapy…”
- Richard Heideman M.D., et al; Patterns of failure in
children with medulloblastoma: effects of preirradiation chemotherapy
in The International Journal of
Radiation Oncology, Biology and Physics;
August 1, 1997, volume 39(1), pages 15-24.
But
even after these admissions that “virtually no cures are reported” with
chemo in 1985, that chemo is “controversial” in 1991, “unproven” in 1993,
and provides “a poor rate of survival and high treatment associated morbidity
(i.e. side effects)” in 1997, nothing changes.
Here we are in 1998. The
children are still getting the same drugs.
The children die of the disease or the chemo itself.
The conclusion is that the treatment doesn’t work.
How many dead children did it take to reach that conclusion?
What’s worse is that even with that conclusion, the oncologists
continue to use these drugs on children.
Chemo
is toxic and ineffective:
After receiving chemotherapy…”there were two toxic deaths.
Median survival of the patients with resistant or recurrent disease
was 4.7 months… Conclusion: Alternative strategies need to be developed
for this highly lethal disease.”
-
Dunkel IJ, Garvin JH Jr; Goldman
S, Ettinger LJ, Kaplan AM, Cairo M, Li H, Boyett JM, Finlay JL. High dose
chemotherapy with autologous bone marrow rescue for children with diffuse
pontine brain stem tumors. J Neurooncol 1998; 37(1): 67-73.
Chemo
and radiation cause an unknown amount of brain damage:
Here, in 1998, comes another one of those ghastly admissions that the
oncologists don’t even know how much brain damage they are causing with
their therapy.
“In
the treatment of children with brain tumors, balancing the efficacy of
treatment against commonly observed side effects is difficult because
of a lack of quantitative measures of brain damage…”
-
Reddick WE, Mulhern RK, Elkin
TD, Glass JO, Merchant TE, Langston JW.
A hybrid neural network analysis of subtle brain volume differences
in children surviving brain tumors.
Magn Reson Imaging 1998 May; 16(4): 413-21.
Chemo
provides “minimal success”
“For
many years, chemotherapy has been utilized for the treatment of malignant
brain tumors with minimal success.”
-
Prados MD, Russo C: Chemotherapy
of brain tumors. Semin Surg Oncol
1998 Jan-Feb; 14(1): 88-95.
Orthodox
therapy “has not improved survival”
“Aggressive
treatment of medulloblastoma, the most common pediatric brain tumor, has
not improved survival.”
-
Weil MD, Lamborn K, Edwards
MS, Wara WM: Influence of a child’s sex on medulloblastoma outcome. JAMA
1998 May 13; 279(18): 1474-6.
Chemo
causes cancer:
Here we are in 1998 and “surprise” more children are getting cancer from
the chemotherapy the oncologists are giving them.
In this article the oncologists list the various secondary cancers
that their latest chemo experiment caused in their young victims.
“Diagnoses
were choroid plexus carcinoma (2 children), ependymoma (1 child), desmoplastic
infantile ganglioglioma (2 children), and medulloblastoma (1 child)…Three
children younger than 2 years old developed…myelodysplastic syndrome (2
children)…and acute myelogenous leukemia (1 child)…Potential causative
factors for this high rate of secondary malignancies include prolonged
use of alkylating agents and etoposide
(chemotherapy)…”
-
Duffner PK, Krischer JP, Horowitz
ME, Cohen ME, Burger PC, Friedman HS, Kun LE.
Second malignancies in young children with primary brain tumors
following treatment with prolonged postoperative chemotherapy and delayed
irradiation: a Pediatric Oncology Group study.
Ann Neurol 1998 Sep;
44(3): 313-6.
But
this should not be any surprise.
Simply take a look at the articles published years before (e.g.
1987, 1991 1997) that already described how chemotherapy causes
new cancers in children.
All
of this information was published and known to oncologists when we walked
through the door with Alexander. This was the unimaginable history of
a highly toxic and ineffective treatment that we never suspected existed.
None of this information was shared with us.
Instead we were told just the opposite - that chemo would help
Alexander because it has already helped thousands of children before him.
What
would our reaction have been if the oncologists had acted honestly and
said:
“Mr.
and Mrs. Horwin, there are chemotherapy drugs that we have been testing
in children with brain cancer for more than 20 years.
The results, after all these years, suggest that chemo is unproven
and potentially dangerous in your son’s disease.
In fact, we have proof that it can cause secondary cancers such
as other brain tumors and various leukemia’s.
Chances are that your son will not benefit appreciably by this
therapy. Most children his
age with medulloblastoma die fairly quickly even with administration of
these drugs. In addition,
because of the toxic side effects of the drugs, Alexander will not enjoy
a quality life. Since there
is no guaranty that the duration of his life will be significantly improved
but there is evidence that the quality of his life will be significantly
hindered we want you to make an informed decision.
Feel free to try any non-toxic therapy that you think may work
or that will give Alexander quality of life.
If you wish to try chemo we are here for you.
If you don’t wish to try chemo we are still here for you and will
provide MRI’s, blood tests, hospice care, etc.
Whatever we can do to help Alexander we would be happy to do.”
Those
honest words would have been “music to our ears.” And yes, we would have passed on the chemo.
But that’s not how chemo was presented.
Instead, we were told that time was running out.
We were told that chemo would offer Alexander a good chance of
survival. We were told that
he would be getting a new chemo protocol with “state-of-the-art”
drugs. And we learned later
that if we did not bring Alexander in for chemotherapy a court order was
contemplated so that the oncologists could take him from us and administer
these poisons without our consent.
Alexander
spent his last months alive not on the beach that he loved so much, but
in a hospital room tied to an IV pole, throwing up and in pain from being
poisoned. This never should
have happened.
There
is no standard of care for this disease in young children.
Chemo does not work and oncologists know it.
They have admitted this in their medical journals.
But we were told that this was a “state-of-the-art” therapy, not
a 20-year toxic failure. This
is not informed consent.
My
wife and I have to live with the knowledge that we never gave our son
a fighting chance to survive his disease.
He died five months after his diagnosis, three months after starting
chemo, just like the other children that had come before him.
The ones that had become statistics in the oncologist’s articles.
And the numbers of dead children continue to mount as these ineffective
drugs continue to be used in cancer hospitals throughout the country.
When
orthodox therapy has nothing to offer, parents must be allowed to exercise
their parental, ethical, moral and legal right and responsibility to protect
their child and fight for his life when he has a terminal disease.
The FDA has no business sentencing young children to death by taking
away a therapy option that could save their life.
Why
does the FDA do this? Five
days of chemotherapy cost our insurance company over $23,000. This does not include the treatment for neutropenic fever,
blood transfusions, vincristine injections and consumption of many other
drugs and medical products. Alexander
was a profit center to the drug companies and oncologists. But chemo is
an ineffective treatment. Faced
with a choice, no one would use it.
And that’s why the drug companies, through the FDA, make sure there
is no choice.
The
question “how does the FDA get away with it?” is not a medical question.
Medically, such a position is insupportable because twenty years
of medical experimentation on children has demonstrated that the therapy
is ineffective and toxic. But
the FDA’s position makes sense when you note the pervasive conflict of
interest that exists. The
decision-makers at the FDA come from the drug companies and the cancer
hospitals. When the choice
is between their profits and other people’s children, other people’s children
are going to die. And they
do die - in the thousands.
We
urge the Congress to make a comprehensive examination of the immense conflict
of interest that exists between the FDA decision-makers and the drug companies
that profit from these decisions.
Children should not be killed for profit.
This has gone on long enough.
While
Alexander was getting his chemo he would smile because he knew that mommy
and daddy were with him. “Alexander
your job is to rest and let the medicine work.
Soon we are all going to go to the beach. Mommy and daddy and Alexander, the team!”
Alexander would open his eyes and force a smile.
“Yeah, the team,” he would whisper.
A
child with cancer has the right to…
The
best non-toxic treatment available in the world.
Stay with his parents without threat of being taken away by the authorities.
Not to be subjected to experiments that reduce him or her to a mere guinea
pig.
Not to suffer. Have quality
of life.
-Raphaele & Michael Horwin
The following basic moral and ethical concepts must be observed in medicine:
All experimental medical protocols should be voluntary.
The experiment should be performed to avoid unnecessary suffering.
No experiments should be conducted where there is a belief that death or
disabling
injury will occur except where the experimental physicians also serve as
subjects.
Proper preparations should be made to protect the subjects even against
remote possibility
of injury, disability or death.
The human subject should be at liberty to bring the experiment to an end.
-Summarized from the Nuremberg Code
Trials of War Criminals Before the Nuremberg Military tribunals Under Control
Council Law 10,
Volume 2, Nuremberg, October 1946-April 1949
Washington D.C., US Government Printing Office, 1949; pp.181-182
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