Myeloma- Stem Cell Transplant

Why do myeloma patients undergo a stem cell transplant? Will you live longer by undergoing aggressive, high dose chemotherapy? The study linked below says no.

“Finally, in 1995, the first randomized trial was published, with impressive results…But these results didn’t hold up…The approach was recognized for what it was: ineffective at best, lethal at worst…”

The NYT article linked and excerpted below is a great read discussing the concept of “evidence-based medicine.” Being a multiple myeloma (MM) blogger I have chosen to focus this post on the article’s discussion of one medical procedure that the article calls “ineffective at best, lethal at worst.” Standard-of-care multiple myeloma treatment- an autologous stem cell transplant (ASCT).

To be fair, when the article below talks about an autologous stem cell transplant, it is referring to the history of the procedure for breast cancer, not multiple myeloma. My perspective however, is that of a long-term MM survivor who’s ASCT in 1995 did not work. My ASCT put me in partial remission for less than 10 months and I spent the next 25 years struggling with the short, long-term and late stage side effects brought about by aggressive, high dose chemotherapy. Which is what an ASCT is.

The issues that jump out at me in the article below are two-

experimental treatments
invested stakeholders

Could two phrases from the article below be more different when writing a blog post about multiple myeloma?

Hear me out. I remember the conversation with Dr. Lazarus like it was yesterday. Dr. Lazarus explained to me that an autologous stem cell transplant for multiple myeloma treatment was considered to be “experimental” and therefore would not be covered by my health insurance. Dr. Lazarus assured me however, that he would write to Medical Mutual of Ohio, my insurer, and get them to cover the procedure.

And he was correct. Medical Mutual of Ohio did pay for my ASCT. Which, as I said, was ineffective. So when I was told that there was “nothing more they (UH) could do for me” in 9/97, I underwent another “experimental” therapy. Antineoplaston Therapy from the Burzynski Research Institute. I went from end-stage MM to complete remission in less than 17 months.

Unfortunately, MMO wouldn’t pay for my experimental therapy this time. Fortunately, I reached complete remission where I have remained until today, 8/19.

To this day (8/30/19) numerous studies for ASCT for multiple myeloma have never shown an overall survival (length of life) benefit. Studies have shown only that ASCT for MM patients can provide, on average, a longer first remission (progression-free survival).

Two very different experimental treatments, two very different outcomes. The experimental procedure that was paid for has “invested stakeholders” in the form of doctors, hospitals, and drug companies and is now consider “standard-of-care” for multiple myeloma patients. The experimental procedure that was not paid for, is considered to be controversial (quack medicine) and has only one invested stakeholder Stanislaw Burzynski, MD, Phd.

I believe the term “evidence-based” in conventional multiple myeloma treatment, is meaningless.

To Learn More about ASCT and Harvesting Stem Cells- click now

Thank you.

David Emerson

MM Survivor
MM Cancer Coach
Director PeopleBeatingCancer

Why Doctors Still Offer Treatments That May Not Help

Evidence-based medicine has made progress since doctors’ infamous bloodletting of George Washington, but less than you might think.

When your doctor gives you health advice, and your insurer pays for the recommended treatment, you probably presume it’s based on solid evidence. But a great deal of clinical practice that’s covered by private insurers and public programs isn’t.

The British Medical Journal sifted through the evidence for thousands of medical treatments to assess which are beneficial and which aren’t. According to the analysis, there is evidence of some benefit for just over 40 percent of them. Only 3 percent are ineffective or harmful; a further 6 percent are unlikely to be helpful. But a whopping 50 percent are of unknown effectiveness. We haven’t done the studies.

Sometimes uncertain and experimental treatments are warranted; patients may even welcome them. When there is no known cure for a fatal or severely debilitating health condition, trying something uncertain — as evidence is gathered — is a reasonable approach, provided the patient is informed and consents.

“We have lots of effective treatments, many of which were originally experimental,” said Dr. Jason H. Wasfy, an assistant professor of medicine at Harvard Medical School and a cardiologist at Massachusetts General Hospital. “But not every experimental treatment ends up effective, and many aren’t better than existing alternatives. It’s important to collect and analyze the evidence so we can stop doing things that don’t work to minimize patient harm.”

In many cases, routinely delivered treatments aren’t rigorously tested for years. Benefits are assumed, harms ignored.

This might have killed George Washington. At 67 years old and a few months shy of three years after his presidency, Washington reportedly awoke short of breath, with a sore throat, and soon developed a fever. Over the next 12 hours, doctors drained 40 percent of his blood, among other questionable treatments. Then he died.

Washington surely had a serious illness. Theories include croup, diphtheria, pneumonia and acute bacterial epiglottitis. Whatever it was, bloodletting did little but cause additional misery, and most likely hastened his death.

Though the procedure was common at the time for a variety of ailments, its benefits were based on theory, not rigorous evidence. In the era of modern medicine, this may strike some as primitive and ignorant.

Yet, hundreds of years later, the same thing still happens (though fortunately not with bloodletting).

In the late 1970s, some doctors thought they had found a way to treat breast cancer patients with what would otherwise be lethal doses of chemotherapy. The approach involved harvesting bone marrow stem cells from the patients before treatment and reintroducing them afterward.

Fueled by encouraging comments from doctors, the 1980s news media reported higher chemotherapy doses as the means to survival. Yet there was no compelling evidence that bone marrow transplants protected patients.

But, told they would, many patients fought insurers in court to get them. Under pressure from Congress, in 1994 all health plans for federal workers were required to cover the treatment. Yet not a single randomized trial had been done.

Finally, in 1995, the first randomized trial was published, with impressive results: Half of women who received a stem cell transplant had no subsequent evidence of a tumor, compared with just 4 percent in the control group. But these results didn’t hold up, with four subsequent clinical trials contradicting them. The approach was recognized for what it was: ineffective at best, lethal at worst…

It is not uncommon for newer evidence to contradict what had been standard practice. A study by an Oregon Health & Science University School of Medicine physician, Vinay Prasad, and colleagues examined 363 articles in the New England Journal of Medicine from 2001 to 2010 that addressed an existing medical practice. Forty percent of the articles found the existing practice to be ineffective or harmful…

Looked at one way, medical reversals like these reflect a failure; we didn’t gather enough evidence before a practice became commonplace. But in another way, they were at least a partial success: Science eventually caught up with practice. That doesn’t always happen.

“Only a fraction of unproven medical practice is reassessed,” said Dr. Prasad, who is co-author of a book on medical reversals, along with Adam Cifu, a University of Chicago physician.

Dr. Prasad’s work is part of a growing movement to identify harmful and wasteful care and purge it from health care systems. The American Board of Internal Medicine’s Choosing Wisely campaign identifies five practices in each of dozens of clinical specialties that lack evidence, cause harm, or for which better approaches exist. The organization that assessed the value of treatments in England has identified more than 800 practices that officials there feel should not be delivered.

It’s an uphill battle. Even when we learn something doesn’t make us better, it’s hard to get the system to stop doing it. It takes yearsor even decades to reverse medical convention. Some practitioners cling to weak evidence of effectiveness even when strong evidence of lack of effectiveness exists.

This is not unique to clinical medicine. It exists in health policy, too. Much of what we do lacks evidence; and even when evidence mounts that a policy is ineffective, our political system often caters to invested stakeholders who benefit from it.

An honest assessment of the state of science behind clinical practice and health policy is humbling. Though many things we do and pay for are effective, there is a lot we don’t know. That’s inevitable. What isn’t inevitable — and where the real problems lie — is assuming, without evidence, that something works…”

Recently Diagnosed or Relapsed? Stop Looking For a Miracle Cure, and Use Evidence-Based Therapies To Enhance Your Treatment and Prolong Your Remission

Myeloma- Stem Cell Transplant

Recommended Reading:

Why Doctors Still Offer Treatments That May Not Help

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