I remember the day that my mother was diagnosed with cancer. It was 1982 and it was the first time that I heard words like mycosis fungoides, chemotherapy, and survival prognosis. The vision of her at our kitchen table, trying not to reveal her fear, and eating ice cream in a “since I’ve got cancer and might die” kind of way is engrained in my memory forever.
She was given a topical chemotherapy agent, nitrogen mustard, that was made from a chemical warfare agent known as mustard gas. It was so potent that we had a special “clean-up” kit, she could not have any physical contact during treatment, and even had to sleep alone. My mom was a nurse, a compliant patient, doggedly determined to drive the disease into remission. Although it periodically flared, she managed it for 35 years.
Lung cancer killed her instead.
I was angry. She was only 70 and she never knew about her great-grandson that would be born a year later, the little boy that she always wished for. I wasn’t angry at her death as much as I was furious about her smoking habit that led directly to developing lung cancer and the fact that she knew the risks of smoking. I sat with her as she died, the oxygen machine whirring in the background as she took two final, slow breaths. That vision is also permanently etched in my memory…. of her tiny, frail body, ravaged by the cancer, finally at peace.
It wasn’t what I had expected. When I received the call that she was going home to hospice and that I needed to return to be her caregiver, I was bracing myself for a long, miserable, heart-wrenching decline like we had experienced with my step-grandfather about ten years prior. He was also a smoker and my memories of his lung cancer include graphic images of his coughing up copious amounts of bloody mucus into his oxygen mask and of being strapped to his hospital bed because the pain medications were making him convulse and get his arms and legs stuck in the bars. My mom died after only 3 weeks on hospice, at home, in her own way and it was beautiful.
My father has a type of chronic leukemia called myelofibrosis. I remember the day that I took him to Seattle for a bone marrow biopsy and again used words like “progression” and “prognosis”. He has been “beating the odds” for about eight years now and last week we got the good news that his platelet count (a critical determinant in myelofibrosis) was the lowest it had been in a few years, indicating stabilization if not outright improvement.
So…. here’s where I got angry again. His oncologist/hematologist is a super nice guy, bright and personable and I like him a lot. He is a young doctor and patiently listens to my dad’s stories and I think he honestly cares and has good intentions. However, despite the significantly improved test results, he recommended starting a “new” chemotherapy drug called Jakafi that is targeted for myelofibrosis. I understand, to some degree, the logic of trying to further lower the platelet count through pharmaceutical intervention but side effects for Jakifi include severe anemia, dizziness, headaches, and a decreased ability to fight infections. My dad has a recent history of falling, pneumonia, and several bouts of sepsis (a potentially fatal infection) so it seems like he would be at an even higher risk if he took the new medication. At his age, he is more likely to die from complications stemming from one of those three factors than he is from the cancer. Why put him through such a thing if he was improving on his own through natural methods? Dad is almost 80 years old and has congestive heart failure among other issues. I don’t think profit is why the oncologist was attempting to prescribe the new drug. He was simply following the accepted “standard of care”, acting in accordance with his medical training, and trying to use all his available tools to help an elderly patient with cancer.
The professional monograph about Jakifi on drugs.com states, “Following interruption or discontinuance of therapy, disease symptoms generally return to pretreatment levels within approximately 1 week”. This implies that the drug doesn’t actually do anything but make you more susceptible to infections and anemia while masking one aspect of your blood count temporarily. I understand the effects of having a high platelet count and the risk of stroke. I’m not convinced that chemically lowering it while increasing other serious risks is something that makes sense, especially since his count is decreasing.
Well, unless you are making money. A Viewpoint article in the Journal of the American Medical Association (JAMA) by Dr. George W. Sledge noted:
“Therapeutic success has long-term consequences. For example, an aromatase inhibitor for early breast cancer may cause an osteoporotic fracture years later. A patient may experience infertility or cognitive disorders as a consequence of chemotherapy. A patient with advanced non–small-cell lung cancer, previously doomed to premature death, may enter prolonged remission with treatment with a checkpoint inhibitor, only to encounter challenges related to treatment-activated autoimmune disease. The oncology clinic has hereby become an entry portal to numerous specialties.”
If we don’t die from cancer… we might get to live with a further “challenge”. So…we can develop a highly lucrative, long-term illness as a result of our “therapeutic success”. Then our oncologist can refer us to other specialists who can prescribe more medications for our “consequences” which, as we know, will also have side effects.
Standard dosing of Jakifi is twice daily and since “disease symptoms generally return to pretreatment levels” it means taking it for duration of your lifetime. At Dad’s age, that could mean a few days or another 15 years. Jakifi costs about $13670 a month, or $450 each day. No wonder the good young doctor is encouraged and taught to prescribe it.
“More than 60 new therapeutic indications in hematology-oncology were approved in 2018. It is impossible for a general medical oncologist to become familiar with the use of new indications at the rate of one per week.”
Since the development rate of new therapies is so rapid, they cannot be taught in medical school or simply through continuing education. This is where Pharma steps in with “teaching” the doctors about the latest and greatest (and most expensive) developments, and, as we saw in the prior post, incentivize them with financial rewards. Even if a doctor is not accepting their funding, they are probably listening to the educational portion…. from the viewpoint of the company selling the product.
According to the National Cancer Institute (NCI):
“Historically, cancer has been one of the most costly medical conditions to treat in the United States. Compared to a decade ago, cancer patients are receiving increasingly expensive chemotherapy and biologics, both alone and in combination. The use of expensive supportive agents and hematopoietic growth factors has also increased. The cost of newly introduced chemotherapy and supportive drug-based treatments is growing, and prices higher than $10,000 a month for individual drugs and biologic agents are common.”
”Cancer patients with health insurance are paying higher premiums than in the past. They are also paying more for copayments, deductibles, and coinsurance.”
And this does not reflect the cost to taxpayers because many cancer patients are unable to work or rely on programs such as Medicare, Medicaid, and the VA health system. The NCI refers to the monetary expenses of cancer as “financial toxicity” and reports that some patients find it more stressful than the illness itself.
In addition to being unsustainably expensive, cancer is the second leading cause of death in the United States.
In a both heartbreaking and appalling report, The Lancet recently revealed,
“Cancer trends in young adults, often under 50 years, reflect recent changes in carcinogenic exposures, which could foreshadow the future overall disease burden.
The risk of developing an obesity-related cancer seems to be increasing in a stepwise manner in successively younger birth cohorts in the USA.
Incidence significantly increased for six of 12 obesity-related cancers in young adults (25–49 years) with steeper rises in successively younger generations.
Our findings are consistent with a previously reported increase in gastric non-cardia cancer among young adults and is thought to reflect, in part, increased prevalence of autoimmune or atrophic gastritis related to exposures to antibiotics and acid-suppressing drugs.”
Evidently, cancer isn’t just a disease for old people anymore. Why is cancer increasing among young adults? This study looked at obesity-related cancers but is that the only factor?
“Numerous epidemiologic and occupational health studies support the importance of lifestyle factors and exposure to known or suspected carcinogens in the development of cancer. In fact, it is estimated that 15–20% of cancer cases are driven by infectious agents, 20–30% of cancer cases are largely due to tobacco use, and 30–35% cases are associated with diet, physical activity, and/or energy balance (e.g., obesity).”
If you did the math on that one, it’s about 85% with the remainder coming from toxins like asbestos, benzene, Roundup, and other chemicals, ultraviolet radiation, alcohol, and unknown agents. Our genetics can play a role, but they are not destiny. Not every person with a gene variant has it express as cancer and there are studies that prove epigenetics, (outside influences like diet and chemical exposure) are a more significant contributor. My dad smoked for 40 years, was overweight, had a very stressful job with shift work and altered sleep patterns, and ate a diet that included many processed foods. These lifestyle factors undoubtedly played a role in his developing cancer and heart disease.
If we look at this from a historical and anthropological view, while there were instances of cancer, it was extremely uncommon.
“In spite of a long history of palaeopathological study of human remains globally, the direct evidence of cancer from ancient human remains is still very rare. This remains the case despite the constantly growing number of remains available for study, and an increase in numbers of bioarchaeologists.
“Cancer, one of the world’s leading causes of death today, remains almost absent relative to other pathological conditions, in the archaeological record, giving rise to the conclusion that the disease is mainly a product of modern living and increased longevity.”
Nearly all recorded cases of cancer in archaeology are within the last few thousand years, a time when we had already transitioned to agriculture and cities to some extent. While there is a possibility that the statistics are skewed because of lifespan and that active tumors would not have been preserved, the evidence for lifestyle impact remains unquestionably solid. Even in paleolithic times we would have had exposure to infectious agents like viruses and bacteria, or toxins like smoke from indoor fires, but we certainly were not completely inundated by obesity, cigarettes, chemicals, antibiotic resistant microbes, processed artificial foods, unrelenting stress, and the compounding factors that we face daily. Cancer appears to be another example of mismatch theory. We are not living in a manner for which we are designed, and our bodies cannot handle the amount of toxins and detrimental lifestyle elements that we expose ourselves to constantly.
“Exposure to carcinogens that exist as pollutants in our air, food, water, and soil, also influence the incidence of cancer. Most exposure to toxic substances and hazardous wastes results from human activities, particularly through agricultural and industrial production.
“Considerable evidence indicates that maintaining a healthy lifestyle has the potential to reduce cancer-related morbidity. Up to one-third of cancer cases in the United States are related to poor nutrition, physical inactivity, and/or excess body weight or obesity, and thus could be prevented.”
So….as we previously discussed, rates of chronic illnesses are rising exponentially, cancer is increasing dramatically in younger adults (especially obesity-related forms), and the financial cost to deal with it is also termed “toxicity”, as if it’s an illness too.
“For the United States to prosper in the 21st century, controlling health care costs is critical—indeed, it is the single most important challenge facing health care. Greater rationing of care is inevitable if health care costs continue to increase. Controlling health care costs is the only way to ensure appropriate investment in other areas, such as education, the environment, and infrastructure, and to provide a more equitable, just, and fair distribution of the remarkable health care advances that have been achieved with even more on the horizon.”
Wait….” rationing of health care”? Yes. It already happens, right here in the United States. Those who struggle with poverty cannot afford the same insurance, co-payments, or treatments that more affluent patients can manage. (they are also less likely to have routine care and basic cancer screenings) Recently, a cancer patient confided to me that they were thrilled that their insurance approved a very expensive treatment. ($100,000) They had been prepared to pay out-of-pocket if the insurance company declined. How many of us have that ability? Do you mortgage or sell your home? Do you use the kids’ college funds? Cash out all your retirement funds?
So here we are again…. sick, fat, and faced with expensive medical care.
Or are we?
If approximately 90% of chronic illness and 85% (or more) of cancers are basically preventable or reversible through lifestyle changes like losing weight, quitting smoking, treating latent/opportunistic infections, improving our microbiomes, and reducing chemical exposure…. why aren’t we looking at that as the answer? It certainly can’t cost $13,670 a month like Jakifi…AND it might actually cure us.
We ALL have cancer…. whether we have an altered cell in our bodies or not. It impacts every single one of us, either directly through a friend or family member, financially, or indirectly through things like our infrastructure, environmental degradation, or lack of funding for schools as medical costs explode.
We have a choice.
“Throughout most of medical history, clinical knowledge was effectively owned by physicians. The physician received specialized training, attended medical meetings, and obtained information from journal articles. The sole source of information for the patient was the physician, who was—or was thought to be—the final arbiter of therapeutic decision-making.
This is no longer the case. Many patients are now informed by online summations of “best therapy,” some of which are based on scientific articles and conference proceedings.
In this data-rich environment, the previously held perception of the physician’s omniscience is no longer plausible.”
When we are given a diagnosis…we have the ability to explore options. I’m by no means saying don’t consult with your healthcare provider but we don’t have to flatly accept smearing our bodies in mustard gas and sleeping alone. We don’t have to agree to prohibitively expensive medications with massive side effects that secondarily induce chronic or degenerative disease as a means to delay death. There are other treatment options that can be very effective or that can be used in combination with modern medical therapies. A perfect example is the well-established fact that fasting as an adjunct with chemotherapy can improve effectiveness and lessen side effects.
Or maybe…. just think about what we do that increases our chances of developing cancer in the first place.
Exactly like our plague of chronic disorders, cancers are a modern blight and one that we don’t need to face in fear, but instead should examine with consideration to the causation of the vast majority. Inarguably, there are cancers that appear in people who “do all the right things” and “live clean” but they are still exposed to viral impacts and environmental toxins. The causes of cancer are multifold and there isn’t a single answer for resolving it but clearly diet and lifestyle choices are critical factors.
We have the opportunity and power to change the outcome and we deserve better than “therapeutic success”.
And we’ll get the bonus effect of a healthspan…. not simply a lifespan.
Addendum: My dad passed away in September of 2021 from heart failure. His cancer had remained stable. I sat with him the night before he died and he suddenly looked up and I could tell that he saw something in the distance. He said, “God, hold my hand” and those were the last words he spoke. I love you Pops.
https://www.drugs.com/monograph/jakafi.html
https://www.drugs.com/price-guide/jakafi
https://www.cancer.gov/about-cancer/managing-care/track-care-costs/financial-toxicity-hp-pdq
https://www.cancer.gov/about-cancer/managing-care/track-care-costs/financial-toxicity-pdq
https://www.cdc.gov/nchs/fastats/cancer.htm
https://www.thelancet.com/action/showPdf?pii=S2468-2667%2818%2930267-6
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5530583/
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3956457/
https://jamanetwork.com/journals/jama/fullarticle/2725150
https://jamanetwork.com/journals/jama/fullarticle
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4901417/
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6257056/
https://www.freepik.com/free-photos-vectors/background”>Background photo created by kjpargeter – www.freepik.com</a>
Janice Penberth 