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The Need To Know - A Husband's Perspective by Greg

This story was originally posted at Cancer Forum:
http://curezone.org/forums/m.asp?f=2&i=267


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Subject: The Need To Know - A Husband's Perspective
From: Greg < gdpawel@... >
Date: 21:54 Oct 13 2002

During three years of research, I've written to over 3,000 medical
professionals and institutions all over the United States and across the
globe. What you'll read from my article, a lot is from them. Some have been
from over 500 medical web sites that I've studied (like MedLine, Pub Med,
Oncololink, Johns-Hopkins, NCI, NIH, etc.). I have all of my wife's medical
records to relay first hand experience.

There are three main points that I've found out in my three years of cancer
research. One, is an understanding of the doctors involved with my wife's
medical care at our local home town hospital. Two, is an understanding of
the lack of uniformed cancer care being practiced here in the United States
(even among a few of the leading cancer centers). Three, cancer patients do
frequently die from their cancer treatments (it is not really "rare") and
not from the cancer itself.

I receive hundreds of emails from other cancer treatment victims and their
loved ones because of my postings on numerous web sites on the internet.
They, as well as myself, thought we were alone. I found out there are too
many of us out their needing more information, that should have been given
"before" cancer treatment.

My wife's medical history:

In 1972, my wife had been diagnosed with ovarian cancer, when she presented
with a left DVT (deep vein thrombosis) and pulmonary embolism at a hospital
in San Diego, CA (blood clots "can" signal cancer). Workup which was
triggered by this presentation revealed that she did have an ovarian
carcinoma for which she underwent total abdominal hysterectomy and received
Chlorambucil (Leukeren) treatment. This postoperative chemotherapy drug was
among the slowest acting and least toxic of the alkylating agents (well
tolerated oral drugs). By giving chemotherapy more often, at lower doses,
it can prevent the regrowth of blood vessels that feed tumors. Depression
of the immune system is slow and reversible, allowing it to regenerate and
contribute to healing. A malfunctioning immune system can fail to stop the
growth of cancer cells. She went twenty-four years before experiencing any
recurrent ovarian cancer.

During the early 90's in Reading, Pa., she underwent a laparotomy (a
surgical procedure which involves opening the abdominal cavity for
examination) as a follow-up and this did not reveal any evidence of
recurrent carcinoma. This is supposed to be the most certain way of
diagnosing ovarian cancer and assessing the extent of cancer spread
(metastasis). However, negative second-look patients have a 50% chance of
disease recurrence anyway. For the most part, her group of oncologists
relied almost entirely on the CA 125 tumor marker (a blood test done to
assess the amount of an antibody that recognizes an antigen in ovarian
tumor cells). The rate of "false positives" makes it inadequate for use "by
itself" for screening of high-risk patients. It should be supplemented with
transvaginal sonography and a rectovaginal pelvic exam all done at the same
time.

It was our family doctor that found her first metastatic recurrence to her
diaphragm in 1996 (not the medical oncologists at our local home town
hospital). She was having dry coughing spells at first but then she began
having a mucus discharge, which eventually was bloody. A chest xray and Cat
Scan had shown a lesion inside her diaphragm. That recurrent ovarian cancer
was surgically excised at Fox Chase Cancer Center. It was a metastatic
transdiaphragmatic tumor from the original ovarian cancer (1972), with
attachment to the lung and other midline structures of the chest. Parts of
those structures were surgically resected (the diaphragm is a common site
for ovarian metastatic recurrence).

The thoracic surgical oncologist left us with the knowledge that a second
place an ovarian metastasis possibly could occur maybe the Central Nervous
System (CNS) like the brain and/or the spine. It is very rare for ovarian
cancer cells to metastasize to the CNS. In fact, up until 1994 there have
been only 67 well documented cases in medical literature. A
multi-institutional study of 4027 ovarian cancer patients over 30 years
identified only 32 cases while an autopsy study of ovarian cancer reported
an incidence of 0.9%. The surgeon at Fox Chase did not feel that further
treatment with chemotherapy was indicated.

However, the ideas of our local home town Medical Oncologists were
different from the Thoracic Surgical Oncologist who excised the tumor from
her diaphragm. My wife received postoperative chemotherapy by these medical
oncologists, seven months after having that metastatic tumor surgically
excised. She did not have any cancer tumor markers indicate any cancer
within her system. Some tumors send out microscopic outposts while most do
not. However, medical oncologists cannot tell which ones do, so they want
to give chemotherapy in nearly every case. The type of chemotherapy she
received was the hit fast, hit hard type combination chemotherapy of Taxol
with Carboplatin (second-line chemotherapy). It is usually given in big
doses, with breaks of several weeks between doses to let the body try to
recover (or else it can kill a patient).

Patients who develop recurrent ovarian cancer more than 6 months after
first-line chemotherapy (in my wife's case, 24 years), can experience
another remission following treatment with the identical first-line
chemotherapy that was previously used (in her case, Chlorambucil). It has
not been shown that platinum-based combination therapy is superior to
single agent alkylator therapy. No substantial benefit has been found in
giving ovarian cancer patients second-line chemotherapy. Clinicians have
found that the toxic effects of this treatment can cause a lower quality of
life for these patients. Plus, the late stage of "recurrent ovarian cancer"
makes the combination chemotherapy of Taxol & Carboplatin drug resistant to
cancer cells and suppresses the immune system, making it possible new
tumors to grow because the patient has been rendered unable to resist them.

In recent years the incidence of central nervous system (CNS) metastasis
has increased. Unfortunately, some chemotherapeutic agents can weaken the
blood-brain barrier (BBB) transiently and allow CNS seeding. Taxol &
Carboplatin are two of the drugs that violate the blood-brain barrier (dose
dependent). In essence, it breaks down, damages the blood-brain barrier
(BBB) to invite microscopic cancer cells into the CNS. A NCI observational
study in 1995 reported experience in their clinic where recurrent systemic
disease occurred in all patients for which they received dose intense
paclitaxel (Taxol) therapy. Brain metastasis was the only site of disease
recurrence, presenting with headache, dizziness, unsteady gait, nausea and
vomiting.

It was our family doctor that found her second metastatic recurrence to her
cerebellum in 1998 (not the medical oncologists at our local home town
hospital). She was presenting with headache, dizziness, unsteady gait,
nausea and vomiting. A large (3.5cm) solitary cerebellar brain tumor was
found via enhanced Cat Scan (later confirmed by an enhanced MRI). The tumor
was excised from her brain by a Neurosurgeon at Hershey Medical Center.
Histologic features were consistent with metastatic papillary
adenocarcinoma with extensive necrosis from the ovary.

The Neurosurgeon stated that he was 99% successful and felt that she should
go back to our local home town hospital and receive focal radiation to the
local tumor bed (which is 2cm beyond the periphery of the excised tumor
site). The treatment protocol recommended for brain metastases of large
solitary tumors exceeding 2cm in diameter is surgical resection followed by
5 fractions of local radiation to the tumor bed. At the same time, she
should receive an MRI of the spine because of suspicions of either another
tumor, on her spine or a herniated disc, causing her leg problems.

However, the ideas of our local home town Radiation Oncologist were
different from the Neurosurgeon who excised the tumor from her brain. The
Radiation Oncologist took it upon himself to give my wife 5 fractions of
focal radiation to the local tumor bed, plus 20 fractions of Whole Brain
Radiation over a 35 day period. The risk of neurotoxicity from Whole Brain
Radiation is not insignificant and this approach is not indicated in all
patients with a solitary brain metastases, particularly when platinum drugs
lower the tolerance of the CNS to radiation.

Literature of the early and mid-80's on morbidity of Whole Brain Radiation,
is flooded with papers reporting long-term side effects, such as dementia,
memory loss, radiation induced necrosis, leukoencephalopathy, in up to 50%
of two year survivors. Whole Brain Radiation Therapy has been recognized to
cause considerable permanent side effects in patients over 60 years of age.
The side effects from WBR Therapy affect up to 90% of patients in this age
group. My wife was 66 years of age while receiving Whole Brain Radiation
Therapy.

During radiation treatment, my wife received an Unenhanced MRI to the spine
that showed a 1cm lesion. Instead of performing an Enhanced MRI to the
spine to further evaluate, our local home town hospital performed a Bone
Scan that showed normal bone imaging. However, a Bone Scan cannot
distinguish what a lesion represents and cannot differentiate between a
tumor, an infection or a fracture. Enhanced (contrast) agents increase the
sensitivity, conspicuity and accuracy of an exam. The agent most commonly
used is Gadolinium. The proper medical protocol for all Brain and Spinal
MRI's for metastatic diseases is Enhanced with contrast (today, it is the
Pet Scan). An Enhanced MRI was not performed and the Radiation Oncologist
told us the lesion was nothing and not to worry about it. He also ignored
my complaints about her having seizures during radiation therapy.

Nine months later, my wife was admitted to our local home town hospital
during the Memorial Day Weekend of 1999, for a week of testing and
evaluation for unexplained falls and light-headiness. After two weeks of
failing to find out what was wrong with her, I took her by ambulance to
Hershey Medical Center for proper medical treatment. At Hershey Medical
Center, we found out by a medical oncologist and a neurologist that she had
Leptomeningeal Carcinomatous (remember the undiagnosed tumor of nine months
prior, not further evaluated?). An Enhanced MRI showed now three (3)
metastatic tumors on her spine. Spinal metastases can grow into adjacent
structures, such as into the meninges from the spine. The largest of these
tumors grew into the meninges on the spine into the spinal fluid, hence
Leptomeningeal Carcinomatous. This was confirmed by a spinal tap.

With the damage already done to her by our local home town hospital, the
doctors at Hershey Medical (in order to save her life or at least give her
some time) had to administer Intrathecal Methotrexate along with systemic
radiation to the spine (Admitted June 19,1999). When both therapies are
performed at the same time it doubles the therapeutic dosages of each
therapy (increasing the neuro-toxic effects on the brain). However, the
cancer cells were eradicated completely from her central nervous system by
this protocol. Ever since the second spinal tap at Hershey (when
methotrexate was already being administered), all of her spinal taps were
negative for 10 consecutive times up until January 14, 2000. A Whole Body
Bone Scan (November 3, 1999) indicated that the skeletal system
demonstrated normal uptake and an Enhanced Brain MRI (November 3, 1999)
showed no new areas of abnormal enhancement.

My first experience with the side effects of combination chemotherapy and
whole brain radiation was when she was at Hershey Medical Center in 1999.
The doctors showed me the Enhanced Brain MRI from her previous year's
cerebellum excision and the one done in 1999. The scans showed the
progressive deteriation of her white matter (white matter disease). Late
delayed effects, occurring several months to many years later, are
classified into diffuse white-matter injury, radiation-induced arteriopathy
& stroke, and late delayed Radiation Necrosis. These reactions are due to
changes in the white matter and death of brain tissue caused by
radiation-damaged blood vessels. This clinical syndrome generally occurs 6
months to 2 years after radiation therapy. Symptoms include decreased
intellect, memory impairment, confusion, personality changes and alteration
of the normal function of the area irradiated (all symptoms my wife had
over the past year).

Radiation Necrosis can be fatal! It causes pathological changes that impair
vascular integrity. Delayed radiation injuries result in increased tissue
pressure from edema, vascular injury leading to infarction (stroke), damage
to endothelial cells and fibrinoid necrosis of small arteries and
arterioles. My wife suffered a stroke to the left basal ganlia area of the
brain in January 2000, confirmed by an enhanced MRI.

My wife had developed necrotizing leukoencephalopathy (a form of diffuse
white matter injury that can follow combination chemotherapy), confirmed by
an enhanced MRI in July of 1998 at Hershey. The white matter is the
covering of the nerves within the brain. Its function is to speed up the
passage of impulses along the nerves. Necrosis is simply a cell dying, all
of its coordinated activities going wrong and things shut down. If a cell
gets too much heat or is poisoned by a toxic substance or exposed to
chemicals that damage its proteins and membraines or radiation that breaks
its DNA molecules, that cell can just stop functioning.

An EEG showed generalized diffuse slowing that was significant with global
encephalopathy. It is most commonly seen in toxic metabolic and
degenerative conditions. There appeared to be a real amount of focal right
sided slowing which would indicate cortical dysfunction on that side. Her
MRI's showed the ventricles overall were prominent and there was widening
of the sulci consistent with cerebral atrophy (wasting away of brain cells
and tissues). There was diffuse, abnormal signal intensity within the
periventricular white matter, consistent with post radiation changes. The
signal abnormality within the white matter appeared slightly increased
compared to her prior studies. A Pet Scan showed globally decreased
radiotracer uptake within the brain, bilaterally, consistent with
involutional change and prior radiation therapy.

Because of the previous chemo-radiation treatments, a recurrence of the
cerebral metastasis was very likely to happen in the future. Some long-term
effects can include development of secondary maligancies (the risk is 16
times greater). Resistance to standard chemotherapy regimens of Carboplatin
with Taxol ultimately develops in nearly all adenocarcinoma cancer patients
(mainly because of the late stages of the cancer). Recurrent ovarian cancer
being such a late stage cancer, can be resistant to the combination
chemotherapy of Taxol/Carboplatin. It can actually spread the cancerous
cells rather than the cancer itself spreading. Since both radiation and
chemotherapy suppress the immune system, it is possible that new tumors are
allowed to grow because the patient has been rendered unable to resist
them. A person who is cured of cancer by these drastic means may find
himself struggling with a new, drug-induced tumor a few years later. A
malfunctioning immune system can fail to stop the growth of cancer cells.

Recurrence of the cerebral metastasis was observed via an Enhanced MRI of
May 2000 at Hershey Medical Center and a Pet Scan of August 2000 at the
University of Pennsylvania. Four, mm-sized metastatic tumors were found in
and around the previously resected cerebeller tumor and because of my
wife's weakened condition, Gamma-Knife would be the only best medical
protocol. She received Gamma-Knife treatment at University of Maryland
Medical Center on September 12, 2000. During the whole time of her
admission at the hospital, the doctors kept referring to her continued
diffuse white-matter injury (brain necrosis), as if she may be too far
advanced in that injury to survive much longer. She died at home on
Thursday, September 21, 2000 at the age of 68 from Cardio-Pulmonary
Failure. Minutes before she expired, her temperature was normal, her blood
pressure was normal but her pulse was 150 (tachycardia). Her heart was
racing to keep up with the lack of brain function and finally quit.

The white matter disease that my wife experienced and caused her death was
primarily a result of Whole Brain Radiation and secondary a result of
Combination Chemotherapy of Taxol & Carboplatin (Methotrexate was icing on
the cake). The Combination Chemotherapy of Taxol & Carboplatin caused
microscopic ovarian cancer cells to seed inside the CNS to form a tumor on
the cerebellum and tumors on the spinal cord, with concomitant necrotizing
leukoencephalopathy. Carboplatin lowered the tolerance of her Central
Nervous System to any radiation treatment.The Whole Brain Radiation
resulted in the death of tumor cells and associated reaction in surrounding
normal brain. Such reactions tend to occur more frequently in larger
metastatic lesions. Late delayed Radiation Necrosis (also known as
Radiation Encephalopathy) is often irreversible and progressive, leading to
severe disability or death (all symptoms my wife experienced).

I feel that my wife's life was greatly shortened and neurologically
deteriorated by the chemo and radiation treatment received at our local
home town hospital. Patients who develop recurrent ovarian cancer more than
6 months after first-line chemotherapy can experience another remission
following treatment with the identical first-line chemotherapy that was
previously used. Aggressive treatment, like surgical excision of tumor and
focal radiation to the local tumor bed, in patients with limited or no
systemic disease can yield long-term survival. In such patients, delayed
deleterious side effects of whole brain radiation therapy are particularly
tragic and there is no survival benefit or prolonged independence. The
patient cannot experience the beneficial improvement in quality of life.

Most surgical oncology is curative (62%). Surgery generally doesn't have
any long-term effects directly related to the procedure itself. With
surgery, observation with Enhanced MRI's, Functional MRI's, Pet Scans and
the like have made observation more detectable and easier. If brain
metastasis would occur, there are a number of radiation treatments for
therapy (Stereotatic, Gamma-Knife and Brachyradiation to name a few). These
are "focal", not "diffuse". My wife and I had the medical adage that since
most of surgical oncology is curative, we wanted to fight her cancers with
surgery. Each and every one gave her more life to live. All of the surgeons
that were involved in her cancer fight over the years are our heroes.

If more people researched how and why their loved-one died after being
treated by orthodox cancer therapies then I believe there would be a
movement to have more effective and less toxic treatments available.
Ideally, we would conduct such research before the treatments were
administered but we usually don't have the luxury of time to learn what the
oncologists are not telling us when it matters most. It is scary when we
try to give oncologists the benefits of doing what needs to be done but we
have to learn to ask more questions and seek more answers.

It seems the medical profession doesn't want to hear about the side effects
of treatment for gynological cancer and keeps referring to the lives of
women loss this way as "rare". If it was their lives, they might not call
it "rare". Some people would have you believe that because "their" bodies
didn't give out after receiving chemotherapy or radiation that these
treatments are "o.k.". Sometimes it is good for the soul to hear what
others in similar circumstances have to say.

The quality of life must be considered as a major decision point in cancer
care. That element, so long missing in most clinics, hopefully will be
brought to the fore especially in the many cancer clinical trials. I hope
that quality of life soon becomes a major outcome issue for all involved in
the treatment of patients with cancer. I will continue to be an advocate
for my loved ones and help others in their own journeys with cancer.

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