Testimony
of
Raphaele and Michael Horwin
Hearings
on
Integrative Oncology
Cancer Care for the New Millenium
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
|