Download the FREE ebook "Beating Myeloma: If I Knew Then What I Know Now" and arm yourself with the information about autologous stem cell transplantation, treatment options, and side effects that I wish I had known about when I began treatment.
I am a long-term multiple myeloma (MM) survivor. I have learned that MM patients, survivors, and caregivers trust their board-certified oncologist to prescribe therapies that are based on research – thoroughly researched and tested therapies that they believe will treat their newly diagnosed multiple myeloma.
The challenges listed below question whether the trust that we MM patients put in our oncologists is well-founded.
I am a long-term MM survivor and MM cancer coach. When I was first diagnosed I did what most cancer patients do. I followed the instructions of my oncologist. I underwent chemo regimen after chemo regimen. After several years, three relapses and “we can do nothing more for you” I was forced away from the world of traditional oncology. What went wrong?
Does conventional toxic chemotherapy save lives? It didn’t save my life. In fact, I now live with life-threatening side-effects from the very therapies that were supposed to help me.
Conventional multiple myeloma research presents many challenges to the average MM patient, survivor and caregiver. It is in every MM patients’ interest to understand the challenges presented below.
The vast majority of cancer nonprofits are talking about research into conventional therapies such as surgery, radiation therapy, chemotherapy, hormone therapy, Immunotherapy and combined treatment modalities such as chemo-radiotherapy.
Raising money for conventional cancer research sounds great. However, few people would donate to or raise money if they understood that conventional cancer research might not benefit MM survivors and caregivers. Most people want to know what their donations accomplish. The articles below outline some of the challenges with conventional cancer research.
Despite the grand scope of the faked research, no one else at Duke was reviewed or cited by federal investigators in last week’s report.
“Cancer at the core of evidence-based medicine…Publication bias… Research misconduct and more.
Watch Dr. Ben Goldacher explain this wide-spread problem during his TED TALK.
The politics of basic academic cancer research versus commercial interests. Do research dollars fund basic research or do they fund commercial projects? Do donations pay for drug companies to bring products to market? Why do the researchers discussed below care enough to quit ?
“A battle about balancing science and commercialization caused 33 scientists to leave a Texas cancer research institute, The Wall Street Journal reports.
The scientists left the Cancer Prevention and Research Institute of Texas to protest moves by an oversight committee appointed by state political leaders. Some of the departing scientists said the committee pushed to fund commercial projects regardless of whether they had been vetted by researchers, The Wall Street Journal writes….”
“Two Republican state lawmakers who helped create Texas’ embattled $3 billion cancer-fighting effort are now demanding to know how it approved an $11 million grant to a biomedical company even though the proposal wasn’t reviewed.”
Today’s research will take years to translate into possible therapies.
“As thousands of Canadians walk and run to raise funds for breast cancer research this weekend, the reality is that much of the advances in scientific understanding will have little immediate impact on patients.”
Clinical trials do not portray the real world of everyday cancer. Cancer patients may be older, may have other health problems, may be negatively affected by side effects- in short, controlled clinical trials are just that- controlled. Chances are pretty good that your experience will be less favorable than clinical trial results.
“Last year, cancer researcher Robert Mandic got news no scientist wants to hear. After publishing a paper on a rare head-and-neck cancer, he learned the cells he had been studying were instead cervical cancer. He notified the journal Oral Oncology, which retracted the article…”
Cancer experts seeking to solve the problem have found that a fifth to a third or more of cancer cell lines tested were mistakenly identified—with researchers unwittingly studying the wrong cancers, slowing progress toward new treatments and wasting precious time and money. In hundreds of documented cases that undermine a broad swath of research, cancer samples that were supposed to be one type of tumor have turned out to be another, through either careless laboratory handling, mislabeling or other mistakes
It is a problem hiding in plain sight. Warnings to properly test cancer cell lines have sounded since the 1960s, a decade after scientists started making human cancer cell lines.
“About a year ago, we wrote about the retraction of a paper in Oral Oncology that highlighted a big issue in oncology research: Widespread contamination of cancer cell lines by other lines, making findings difficult to interpret…”
Study results are biased by the study’s sponsors. The vast majority of all cancer research is paid for by for-profit companies.
“Drug studies financed by pharmaceutical companies frequently show positive results in favor of the sponsor...The authors conclude that pharmaceutical companies exploit a wide variety of possibilities of manipulating study results. Apart from financing the study, financial links to the authors, such as payments for lectures, may tend to make the results of the study more favorable for the company. Not only the results themselves but also their interpretation, are significantly more often in accordance with the wishes of the sponsor.”
“Clinical Trials” are… difficult. This last one is complicated. I will outline the issues below but my point is that the Food and Drug Administration (FDA) mandates controlled clinical trials with lots and lots of problems associated with them.