Cancer Therapy

gdpawel Member Posts: 523 Member
edited March 2014 in Lung Cancer #1
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.


  • loulou
    loulou Member Posts: 65 Member

    Your message seems to be that people should not pursue aggressive treatment because of the downsides. Entitled as you are to your perspective, perhaps more balance is in order when suggesting to others what is best. Yes, a lot of people have gone through horrible side effects and even death from treatments, but many, like me, endure some discomfort from treatment and emerge happy and healthy as a result.

    I agree that people need the information to decide for themselves what course of action to take. Anyone making such decisions need to understand all the pros and cons, and also the uncertainty of any predictions. Statistics don
  • jerrychen
    jerrychen Member Posts: 2
    Dear Sir:
    Thank you for your efforts to point out the drawbacks of chemotherapy or radiation therapy.
    Do you have any research of alternative ways of treatment for lung cancer.
  • gdpawel
    gdpawel Member Posts: 523 Member
    jerrychen said:

    Dear Sir:
    Thank you for your efforts to point out the drawbacks of chemotherapy or radiation therapy.
    Do you have any research of alternative ways of treatment for lung cancer.

    Chemosensitivity Testing

    When a patient has an infection, doctors often send a sample of infected blood or tissue to a lab where they can grow the bacteria and see which antibiotics are most effective (called Bacterial Culture and Sensitivity Testing). Chemosensitivity testing is an attempt to do something similar for cancer; fresh samples of the patient's tumor from surgery or a biopsy are grown in test tubes and tested with various drugs. Drugs that are most effective in killing the cultured cells are recommended for treatment. It is highly desirable to know what drugs are effective against your particular cancer cells before highly-toxic agents are systemically administered to your body.

    One approach to individualizing patient therapy is chemosensitivity testing. Chemosensitivity assay is a laboratory test that determines how effective specific chemotherapy agents are against an individual patient's cancer cells. Often, results are obtained before the patient begins treatment. This kind of testing can assist in individualizing cancer therapy by providing information about the likely response of an individual patient's tumor to proposed therapy. Chemosensitivity testing may have utility at the time of initial therapy, and in instances of severe drug hypersensitivity, failed therapy, recurrent disease, and metastatic disease, by providing assistance in selecting optimal chemotherapy regimens.

    All available chemosensitivity assays are able to report drug 'resistance' information. Resistance implies that when a patient's cancer cells are exposed to a particular chemotherapy agent in the laboratory, the cancer cells will continue to live and grow. Some chemosensitivity assays also are able to report drug 'sensitivity' information. Sensitivity implies that when a patient's cancer cells are treated with a particular chemotherapy agent in the laboratory, that agent will kill the cancer cells or inhibit their proliferation.

    The goal of all chemosensitivity tests is to determine the response of a patient's cancer cells to proposed chemotherapy agents. Knowing which chemotherapy agents the patient's cancer cells are resistant to is important. Then, these options can be eliminated, thereby avoiding the toxicity of ineffective agents. In addition, some chemosensitivity assays predict tumor cell sensitivity, or which agent would be most effective. Choosing the most effective agent can help patients to avoid the physical, emotional, and financial costs of failed therapy and experience an increased quality of life.

    Fresh samples of the patient's tumor from surgery or a biopsy are grown in test tubes and tested with various drugs. Drugs that are most effective in killing the cultured cells are recommended for treatment. Chemosensitivity testing does have predictive value, especially in predicting what 'won't' work. Patients who have been through several chemotherapy regimens and are running out of options might want to consider chemosensitivity testing. It might help you find the best option or save you from fruitless additional treatment. Today, chemosensitivity testing has progressed to the point where it is 85% - 90% effective.

    Conventionally, oncologists rely on clinical trials in choosing chemotherapy regimens. But the statistical results of these population-based studies might not apply to an individual. For many cancers, especially after a relapse, more than one standard treatment exists. There is rarely a situation where you would get everyone to agree that there's only one form of therapy. Physicians select drugs based on their personal experience, possible side effects and the patient's condition, among other factors. The system is overloaded with drugs and underloaded with wisdom and expertise for using them.

    Chemosensitivity testing might help you find the best option, or save you from fruitless additional treatment. Another situation where chemosensitivity testing might make particularly good sense is in rare cancers where there may not be enough experience or previous ideas of which drugs might be most effective.

    Finally, there has been a veritable deluge of new approvals of cytotoxic drugs in recent years as the tortuous FDA process has been speeded and liberalized. In many cases a new drug has been approved on the basis of a single very very narrow indication. But these drugs may have many useful applications - and it's going to take years to find out. Chemosensitivity testing offers a way of seeing if any of these new drugs might apply to your specific cancer.

    Another Name

    Cell Culture Drug Resistance Testing (CCDRT) or Chemotherapy Sensitivity and Resistance Assays (CSRAs) refers to laboratory testing of a patient's own cancer cells with drugs that may be used to treat the patient's cancer. A group of lab tests known as Human Tumor Assay Systems (HTAS) can aid oncologists in deciding which chemotherapies work best in battling an individual patient's form of cancer. The assay is a lab test performed on a biopsy specimen containing living cancer cells. It's used to determine the sensitivity or resistance of malignant cells to individual chemotherapy agents. Depending on how well the tumor cells respond to each chemotherapy agent, they are rated as sensitive, resistant or intermediate to chemotherapy. The concept is that you are better off using a chemotherapy drug that your tumor reacts to strongly than one your tumor resists.

    There have been over 40 publications in peer-reviewed medical literature showing correlations between cell-death assay test results and the results of clinical chemotherapy in more than 2,000 patients. In every single study, patients treated with drugs active in the assays had a higher response rate than the entire group of patients as a whole. In every single study, patients treated with drugs inactive in the assays had lower response rates than the entire group of patients. In every single study, patients treated with active drugs were much more likely to respond than patients treated with inactive drugs, with assay-active drugs being 7 to 9 times more likely to work than assay-inactive drugs. A large number of peer-review publications also reported that patients treated with assay-tested 'active' drugs enjoyed significantly longer survival of cancer than patients with assay-tested 'negative' drugs.

    How May a Patient Arrange to Have Their Tumor or Leukemia Tested?

    Both fluid and solid tumor (200mg in size) specimens may be sent out via Federal Express or another overnight courier service for testing at one of more than a dozen labs around the country. Note that the choice of a lab is not a geographical consideration, but a technical consideration. All of the labs that are listed are experienced and capable of providing very useful information. However, the labs vary considerably with regard to technologies, approach to testing, what they try to achieve with the testing, and cost. These private laboratories have been offering these assays as a non-investigational, paid service to cancer patients, the average cost being about $2,000, in a situation where 20 different drugs and combinations are tested, at two drug concentrations in three different assay systems.

    Assay-tests could be performed from ovarian cancer cells in pleural fluid (fluid from the cavity that surrounds the lungs) which is evidence of Stage IV ovarian cancer, or from Ascites (an abnormal accumulation of fluid in the abdomen), and of course lymph nodes. A worse case scenario is the spinal fluid (spinal tap) but only to diagnose Leptomeningeal Carcinomatous (ovarian). The labs will provide you and your physician with in depth information and research on the testing they provide.

    By investing a little time on the phone speaking with the lab directors, you should have enough knowledge to present the concept to the patient's own physician. At that point, the best thing is to ask the physician, as a courtesy to the patient, to speak on the phone with the director of the laboratory in which you are interested, so that everyone (patient, physician, and laboratory director) understand what is being considered, what is the rationale, and what are the data which support what is being considered.

    Some Resistance

    The fact that some doctors don't agree isn't stopping many cancer patients from taking this matter into their own hands, and sending their live path specimens off to one of the above private labs for assay-testing to be done. In fact, approximately 10,000 individual patient specimens are currently being submitted for testing by more than 1,000 clinical oncologists, surgeons and pathologists annually in the United States. It seems probable that a self-educated oncologist, genuinely on the cutting-edge would tend to be aggressive in actual treatment beyond mere rhetoric and make use of running tests on the biopsy before selecting a chemotherapy option.

    There has been much discussion about whether assay (in vitro) tests are of any use, as the in vivo response to a drug may very well be different in the body than in the petri dish. But, they said the same for Bacterial Culture and Sensitivity Testing. Doctors cannot remember a time when they didn't have this technology. It is a 'gold' standard. So will Chemosensitivity Testing. After all, cutting-edge techniques can often provide superior results over tried-and-true methods that have been around for many years.

    Listing of Specialized Laboratories in the United States:

    These labs will provide you and your physician with in depth information and research on the testing they provide.

    Analytical Biosystems, Inc., Providence, Rhode Island. 1-800-262-6520

    Anticancer, Inc., San Diego, CA. 1-619-654-2555

    Cancer Therapeutics, Inc., Thomasville, GA. 1-229-224-6839

    DiaTech Oncology, Brentwood, TN. 1-615-294-9033

    Genomic Health, Inc. Redwood City, CA. 1-650-556-9300

    Genoptix, Inc., San Diego, CA 1-858-523-5000

    Human Tumor Cloning Laboratory, San Antonio, TX. 1-210-677-3827

    Impath, Inc., New York, NY. 1-800-447-8881

    Nu Oncology Labs, Virginia Beach, VA. 1-757-554-0926

    Oncotech, Inc., Irvine, CA. 1-714-474-9262 / FAX 1-714-474-8147

    Oncovation LLC, New York, N.Y. 1-212-514-2422

    Precision Therapeutics, Pittsburgh, PA. 1-866-243-6639

    Rational Therapeutics Institute, Long Beach, CA. 1-562-989-6455

    Sylvester Cancer Institute, Miami, FL. 1-305-547-6875

    Weisenthal Cancer Group, Huntington Beach, CA. 1-866-364-0011