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gdpawel's picture
gdpawel
Posts: 545
Joined: May 2001

My wife had been diagnosed with Ovarian cancer in 1972 when she presented with a left DVT(deep vein thrombosis) and pulmonary embolism. Workup which was triggered by this presentation revealed that she did have an ovarian carcinoma for which she underwent total abdominal hysterectomy and received leukeran treatment for four years. She went twenty-four years before she ever had a metastatic ovarian recurrence.

Metastasis are cancer cells that travel to other parts of the human body from a primary cancer site and develop into a lesion(tumor). Some primary cancers like Breast and Lung can commonly metastisize to the Central Nervous System, like the brain. However, it is very rare for Ovarian cancer cells to metastisize into the Central Nervous System. In fact, 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%. Metastasis of Ovarian cancer to the central nervous system is uncommon and was rarely seen before the use of present day chemotherapy regimens.

So how can Ovarian cancer cells invade the Central Nervous System? Cocktail Chemotherapy. It can do this in two ways. Some chemotherapy drugs do permeate(pass through) the blood brain barrier(the system that protects the brain from foreign substances by blocking their passage from the blood). In essence, it breaks down, damages the blood brain barrier to invite cancer cells into the Central Nervous System. The second way cancer cells invade the Central Nervous System is that Chemotherapy suppresses the body's immune system. The body's immune system attacks and eliminates not only bacteria and other foreign substances but also cancer cells. Cancer cells are not foreign to the body but their biological function has been altered in that it doesn't respond to the body's normal mechanisms for controlling cell growth and reproduction(uncontrolled cell growth and reproduction is what causes cancerous tumors). Much of the body's protection against cancer is carried out directly by cells of the immune system rather than by antibodies circulating in the bloodstream. Cancer is 100 times more likely to occur in people who take drugs, like chemotherapy that suppress the immune system than in people with a normal immune system.

My wife received postoperative Chemotherapy, six months after having a metastatic transdiaphragmatic tumor from an original primary tumor(1972), resected in the Summer of 1996. She did not have any cancer tumor markers indicate any cancer within her system when she received the chemotherapy treatment(she did not have any cancer). The hit fast, hit hard type of Chemotherapy she received was a highly neurotoxic cocktail of Taxol and Carboplatin. A group of platinum based drugs called Cisplatin, Cisplatinum and Carboplatin and a natural substance called Taxol, cross the blood brain barrier. She developed necrotizing leukoencephalopathy(a form of diffuse white matter injury that can follow this chemotherapy), confirmed by an enhanced MRI in July of 1998. 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. The effects of leukencephalopathy can be very severe, including mental confusion, fits and paralysis.

The Summer of 1998 a single cerebellar brain metastasis was found via enhanced Cat Scan and confirmed by an enhanced MRI. The 3.5cm tumor was resected on July 17, 1998. Histologic features were consistent with metastatic papillary adenocarcinoma with "extensive necrosis" from the ovary. Necrosis means dead. Necrotic tissue means dead tissue. Tumors are not dead, they are uncontrolled cell growth and rapid reproduction. Imaging features of necrotizing leukoencephalopathy include periventricular white matter hypodensity on Cat Scan and hypo/hyperintensity on T1/T2 weighted MRI. Aggressive treatment, like surgical resection in patients with no other systemic disease can yield long-term survival. Postoperative Chemotherapy treatment of Taxol and Carboplatin was not the proper treatment for her. She did not have any cancer at the time of treatment. The analogy of millions and millions of microscopic cancer cells(not being able to be seen), becoming billions and billions of cancer cells and eventually becoming a tumor is salesmanship by medical oncologists to promote chemotherapy.

My wife received postoperative Whole Brain Radiation therapy for that large solitary brain metastasis in the Summer of 1998. She began developing brain radiation necrosis within 6-10 months after Whole Brain Radiation, confirmed by an enhanced MRI in June of 1999. Her radiation-induced brain necrosis could have been focal or diffuse, depending on the modality of treatment. The five fractions of focal radiation to the local tumor bed that she received could have resulted in focal necrosis around the tumor bed or she could have developed metastatic recurrance. In her case she developed metastatic recurrance as per Pet Scan of August 2000 showing abnormal foci of radiotracer accumulation within the right cerebellar hemisphere, right cerebellopontine angle, pons and base of the fourth ventricle consistent with new metastatic foci. Her previous tumor resection of July 1998, was a 3.5cm necrotic mass in the right cerebellar hemisphere. Recurrance of a cerebral metastasis was very likely to happen in the future. It did, observed via an enhanced MRI in May and August 2000. The Pet Scan in August of that year, confirmed the findings.

Her additional twenty fractions of Whole Brain Radiation resulted in diffuse necrotic effects. The Pet Scan showed globally decreased radiotracer uptake within the brain, bilaterally, consistent with involutional change and prior radiation therapy. The MRI's showed the ventricles overall were prominent and there was widening of the sulci consistent with atropy. 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. An EEG of December 1999 showed generalized diffuse slowing that was significant with global encephalopathy. It is most commonly seen in toxic metabolic and degenerative conditions(my wife received five of six intended treatments of the highly neurotoxic chemo cocktails of Taxol and Carboplatin from March until July of 1997). There appeared to be a real amount of focal right sided slowing which would indicate cortical dysfunction on that side.

Delayed radiation injuries result in increased tissue pressure from edema, vascular injury leading to infarction, 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). There are a number of radiation treatments for therapy. The Whole Brain Radiation treatment my wife received was not the proper treatment for her. In her case, tumors greater than 2cm in size should be resected(if possible) and depending on the surgeon's success(her's was 99%) focal radiation to the local tumor bed is indicated. Her radiation oncologist's ideas were different from those of the neurosurgeon and gave her twenty fractions of Whole Brain Radiation to a perfectly good brain. The radiation oncologist had not told us of any of the late-delayed reactions that could happen from Whole Brain Radiation(the Pennsylvania State Board of Medicine and the Department of Health are presently investigating my wife's case). Aggressive treatment(like surgical resection 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. Within 6 months to 2 years patients can develope progressive dementia, ataxia and urinary incontinence causing severe disability and in some, death(all symtoms my wife developed).

Even the study performed by Dr. Roy Patchell, et al, in the early '90's was recognized incorrectly in the radiation oncology profession. The study was thought to have been the difference between surgical resection of brain tumor alone, vs. surgical resection & whole brain radiation. It was not. It was a study of whole brain radiation of a brain tumor alone, vs. whole brain radiation & surgical resection. The increased success had been the surgery. And they measured "tumor recurrance", not "long term survival". Patients experiencing any survival were dying from Radiation Necrosis(starting within two years of whole brain radiation treatment) and documented as "complications of cancer" not "complications of treatment". There was less "tumor recurrance" but not more "long term survival". In my wife's case, tumors recurred.

Patchell's study, conducted over an eight year period at numerous institutions, was given to only 146 eligible patients. It convincingly showed that there was no survival benefit or prolonged independence in patients who received postoperative whole brain radiation therapy. It never mentioned the incidence of dementia, alopecia, nausea, fatigue or any other numerous side effects associated with whole brain radiation. The most interesting part of his study were the patients who lived the longest. Patients in the observation group who avoided neurologic deaths had an improvement in survival, justifying the recommendation that whole brain radiation therapy is not indicated following surgical resection of a single brain metastasis.

Be mindful, there were other gross medical negligences done to my wife, but brain radiation necrosis from Whole Brain Radiation treatment was the largest precipitant to her death and Cocktail Chemotherapy of Taxol & Carboplatin was secondary. There is the legal requirement that all doctors must give the patients the information about informed consent. It is the patient's right to determine what the patient wants done to their own body. It is not enough for consent for a patient to merely sign their name or say "yes" to proceed. It needs to be an "informed" consent which means the patient needs to be told things like the nature of the treatment, all of the risks and alternatives, including their risks and non-treatment if that's an option.

We were never informed by any doctor involved with my wife's chemotherapies or radiation therapies about the possible late-delayed side effects of treatment, nor the alternatives to treatment. Ann and I were corraled into believing this was the only thing to do, no other choice and no mention of the late side effects of treatment.

My wife wanted me to fight by informing and educating as many as will listen, so others will not suffer the results she suffered. One can learn from someone else's mistakes or one can learn from their own mistakes. They have a choice.

I never came across the idea of radiation necrosis, much less chemo-induced necrosis, until the doctors at Hershey Medical Center pointed it out to me in June 1999. I've spent two years with many a sleepless night researching what really happened to my wife and how she was killed. Death by "side effects of treatment" is not the same as "complications of cancer". A lot of cancer patients who succumb to their disease, get the wrong information on their death certificates. Often it will say they died of heart failure, kidney failure, liver failure, etc. These can be side effects of cancer treatment as well as the progression of the cancer. They are lumped together reducing the general understanding of the impact of cancer.

The sad idea I found out over my two years of research was that cancer patients do die from chemo-radiation treatments. The very sad idea I found out that this is the "norm", a common occurrence. I just can't believe this and refuse to accept this adage. Yes, I'm bitter and angered, so was my wife. She wanted me to put my anger and bitterness into constructive research, education and exposure of the conventional way patients are being treated for cancer. So much conventional cancer treatments have been available for such a short period of time that it has not yet been determined all of the truely long term side effects of some of these treatments.

I am a spouse who saw his soul-mate being slowly tortured to death because of what he did not know before but who knows now, the insidious side effects they incurred on my wife with negligent practice. I never realised a patient or patient's loved one had to be just as knowledgeable or even more knowledgeable than the oncologists that treat these patients. Not having the knowledge before hand resulted in the death of my loved one.

I know of the statistics that the vast majority of doctors(of any type) would not subject themselves or their loved ones to any chemotherapy or radiation therapy if they or their loved ones were put into the situation. My wife's death was chemo-radiation necrosis, a slow, arduous, neurological death. It is not preferable to a cancerous death.

LaundryQueen's picture
LaundryQueen
Posts: 682
Joined: Mar 2011

Greg: I would like to know how the outcome of the investigation went. I also had brain toxic effects from taxol. I was scheduled to have neurocognitive testing done & my appointment isn't until 10-11. So if I seem a little erratic at times, I just claim to have chemobrain (which is not officially recognized by insurance companies).

Thanks for staying on the board & thank your sweet wife who remains with you in spirit.

(((Hugs)))

LQ

Tethys41's picture
Tethys41
Posts: 1053
Joined: Sep 2010

LQ what are the symptoms of brain toxic effects from chemo?

Tasgirl's picture
Tasgirl
Posts: 85
Joined: Jun 2010

Hi Nancy
Greg is quite often on the inspire board but it is most unusual that such an old post has come to light. I think he has been on this board recently as well.
Jenny

groundeffect
Posts: 651
Joined: Mar 2003

This is an old post, but this member of the group is still active, and I've seen his posts on other boards. He's very good at examining new therapies that are offered for OVCA!

LaundryQueen's picture
LaundryQueen
Posts: 682
Joined: Mar 2011

Tethys41: My symptoms from taxol were sleeping a lot for two days then unable to sleep, unable to get myself to the toilet without help, wetting the bed, staggering, stammering, unequal pupils, blurred vision, unable to give the ER nurse my date of birth correctly, and weird visual symptoms where it seemed like someone was turning lights on & off. I could taste the taxol coming thru my skin & in my nasal secretions.

Tell me that ain't scary! I think I'm like you unable to detox taxol. The first taxol of the cycle was no problem--the following week, I was in the hospital. After being hospitalized twice for the same problem, the doctor stopped giving it to me (even though it worked great for me).

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