Why Oncology Can’t Cure Multiple Myeloma Explained

3 Reasons Why Oncology Can’t Cure Multiple Myeloma

Three Reasons Why Oncology Can’t Cure Multiple Myeloma. Having struggled with multiple myeloma since my diagnosis in 1994, I have developed some strong beliefs on one of the most frequently asked questions when talking about this incurable blood cancer.

Why can’t oncology cure multiple myeloma?

I am a long-term survivor of an incurable blood cancer called multiple myeloma. My research and experience with evidence-based non-conventional therapies is the reason why I have lived in complete remission from my incurable blood cancer since achieving complete remission in early 1999. I have learned that the best way to manage aggressive cancers is to combine the best of conventional and evidence-based non-conventional therapies.

I have come to believe that therapy-induced side effects can be life-threatening while ruining quality of life. Consider therapies shown to reduce possible side effects.

Scroll down the page and post a question or a comment if there’s anything you’d like to know about breast cancer.

Good luck,

David Emerson

While driving home on a snowy Friday after work one day in January of 1994, I decided to swing by an Urgent Care. The pain in my neck had been bothering me for a few months now, and the pain was becoming a distraction.

I was happy not to have to wait too long before I got an X-ray of my neck. The doctor and I looked at the X-ray together. An oval mass about half an inch wide appeared in the middle of my neck. The doctor told me that he had no idea what it was and advised me that I should have the mass diagnosed properly. He was able to schedule me for an appointment on the morning of the coming Monday at University Hospitals of Cleveland.

I, too, had no idea what was causing the pain in my neck. Being 34 and in good physical condition, I was curious to find out what the mass was.

After a blur of tests leading up to an eight-hour surgery, Dr. Makley came to see me as I was recovering. Dr. Makely was a pathologist. He was the doctor who took a sample from my neck during the surgery and was able to diagnose the sample under a microscope. He gently explained to me that I had a blood cancer called multiple myeloma.

Most everyone who has been diagnosed with an incurable blood cancer understands the negative emotions that bubble up inside you in the weeks and months following an oncologist telling you that you have cancer.

When I met with Dr. Berger, the oncologist who would manage my care during the weeks, months, and years ahead, he told me that I had something called a single bone plasmacytoma. According to Dr. Berger, I didn’t have cancer, I had a precursor to frank multiple myeloma.

I didn’t understand that what Dr. Makely had told me was a different diagnosis than what Dr. Berger had told me. I just chalked this up to not understanding the jargon that the doctors and nurses used during the weeks, months, and years following my diagnosis of incurable blood cancer.

What took me years to figure out following my original diagnosis of myeloma, was that conventional, FDA-approved “standard-of-care” therapies would do little for me other than cause a series of short, long-term, and late-stage side effects. I assumed, like most people, that conventional oncology best bet. I assumed incorrectly.

The surgery to remove the lesion in my fifth cervical vertebra was followed by several weeks of local radiation to the same area. The radiation was designed to kill any remaining myeloma cells that my surgeon, Dr. Emory, missed when he removed the lesion and affixed my fourth cervical vertebra to the sixth cervical vertebra.

What I didn’t know at the time was the long-term damage that radiation can do to the surrounding tissue

I cover the two long-term side effects called

that I discuss later in this e-book. One of the many things that I would learn years later is that not only does radiation cause side effects, but those side effects can be minimized or even prevented completely.

When Dr. Berger told me that I had a single bone plasmacytoma, he told me that there were no therapies that would treat my pre-myeloma. I learned years later that this, too, was incorrect.

Less than a year later, I began feeling numbness and tingling running down my left leg. Full multiple myeloma was causing bone involvement- lytic lesions in my bones. This time in my hips and tailbone (iliac crest and sacrum).

More radiation to zap the myeloma and the early stages of a side effect called

radiation-induced lumbosacral plexopathy (nerve damage)

Again, years later, I would learn that I could undergo evidence-based non-conventional therapies to reduce the severity or prevent RILP altogether.

The formal diagnosis of multiple myeloma triggered the FDA-approved standard-of-care therapy plan of

induction chemotherapy
Chemotherapy to mobilize stem cell production
An autologous stem cell transplant

I would relapse in less than a year following my autologous stem cell transplant. During the 15 or so years following my autologous stem cell transplant, I would develop

Deep vein thrombosis (blood clots)
Steroid-induced cataracts
Hemorrhagic cystitis (irritable bladder)
Chemotherapy-induced cognitive dysfunction (chemobrain)
Avascular Necrosis (steroid-induced joint damage)
Chemotherapy-induced cardiomyopathy (heart damage. atrial fibrillation, hypertension all caused by my chemotherapies)

On September 30th, 1997, Dr. Ann Rassiga, the University Hospital oncologist who took over my case after Dr. Rosensweig took over my case from Dr. Berger, would explain to my wife and me that “there’s nothing more that we can do for you.”

Looking back, I believe that Dr. Rassiga was just being honest by telling me that conventional therapies- surgery, chemotherapy and radiation- did little to treat my incurable blood cancer and that more conventional therapies would only create more short-term, long-term and late-stage side effects.

Within six weeks, I had an appointment at the Burzynski Research Institute in Houston, Texas. Once in Houston, I would begin something called antineoplaston therapy (ANP). An alternative therapy that is not approved by the FDA.

I would reach complete remission within 17 months, where I remain to this day.

Antineoplaston therapy and the Burzynski Research Institute (ANP, BRI) would be my introduction to the world of evidence-based, non-conventional therapies such as ANP.

Almost by accident, I learned that there is a world of therapies and treatments that have not been studied or approved by the Food and Drug Administration. Yes, some of these therapies are quack treatments. But many are not.

Ironically, many conventional oncologists consider ANP to be just such a quack therapy. My problem is that this quack therapy put me in complete remission 17 months after several years of aggressive conventional therapies led me to a diagnosis of end-stage myeloma.

I launched PeopleBeatingCancer.org in 2004 to bring information to MM patients, survivors, and their caregivers about both conventional and non-conventional therapies.

Decades of living with my radiation and chemotherapy-induced long-term and late-stage side effects burden me, and at the same time, these side effects educate me.

Studying and writing about MM has become my life’s purpose. I launched a 501C3 non-profit called the Galen Foundation DBA PeopleBeatingCancer in June of 2004.

I have been researching and blogging about MM since 2004. After more than 10 years of traditional fundraising to support the Galen Foundation, I decided that I was tired of hitting up my family and friends for support and decided to launch cancer coaching for pre- and full MM patients.

Cancer coaching revenues cover 40% of the expenses of running Galen while donor support covers the other 60%, expenses such as web hosting fees, graphic design fees, and the part-time assistant director.

At this point in my MM journey, I am more likely to die of a treatment-related side effect like chemotherapy-induced cardiomyopathy than I am of multiple myeloma.

Having lived with MM since 1994 and studied MM since 2004, I can see what oncology does well and what it does poorly. For example, oncology has achieved remarkable advancements in:

MM diagnostic testing, such as multiple types of imaging-
MM chemotherapy regimens, such as induction therapies–
MM therapies such as CAR-T cell therapy-

While at the same time, oncology’s deficiencies are many. I believe that oncology can’t cure multiple myeloma because of the 9 reasons outlined in this book.

What is the definition of “cure” for multiple myeloma?

My definition of cure for MM is undergoing therapy that makes the cancer disappear and not reappear in the patient’s lifetime. Meaning, the MM patient dies of something other than MM.

Over the past few years, conventional oncology has been using the term “functional cure” in myeloma treatment.

When I talk about why I think conventional oncology can’t cure MM, I’m talking about my definition of the word cure, not Dr. Durie’s definition of the word cure.

Reason 1- Single Standard-of-Care Therapy Plan for standard-risk newly diagnosed patients

The Food and Drug Administration (FDA) has approved a single standard-of-care (SOC) therapy plan for all newly diagnosed standard-risk myeloma patients (NDMM). That SOC plan is:

induction therapy- usually Velcade, Revlimid, Dexamethasone (VRd)
autologous stem cell transplant,
and low-dose maintenance therapy- usually low-dose Revlimid

Whether you are a 50-year-old, stage 1 NDMM, or a 70-year-old stage 3 patient, your oncologist will prescribe the same therapy plan.

Though board-certified oncologists can prescribe any FDA-approved therapy for their MM patients, the vast majority of oncologists, whether they are general oncologists, hematologists/oncologists, or MM specialists, will all prescribe the FDA SOC therapy plan for NDMM.

To be fair, VRd and DVRd are both effective induction therapies. Each has an overall response rate percentage in the nineties and, according to research, more than 50% of NDMM achieve minimal residual disease negativity.

Unfortunately, both are aggressive chemo cocktails and can cause serious side effects. One of these serious side effects is infection. On average, MM patients are older. MM itself increases infection risk. Aggressive toxicity increases infection risk further. More than a quarter of early MM deaths are due to infection.

https://pmc.ncbi.nlm.nih.gov/articles/PMC11694133/

Many NDMM patients may want a lower dose approach to their induction therapy.

The current FDA approved standard-of-care therapy plan is a lot of chemotherapy. In my experience, the MM patient with advanced disease (stage III) may need that much chemo to become stable but the stage I patient does not.

Further, the more than 50% of NDMM patients who undergo standard induction therapy of either RVD or DVRd and reach MRD negativity have little to gain by undergoing an ASCT, yet they damage their immune systems and dramatically increase the risk of short-term and long-term side effects. NDMM patients who achieve MRD-negative status after induction therapy only can begin low-dose maintenance therapy and spare their bodies the exhausting, damaging process of an ASCT.

Why is a single standard of care a problem?

As I’ve mentioned, the FDA approved standard-of-care therapy plan for all newly diagnosed MM patients is a lot of toxicity. As the saying goes, myeloma is a marathon, not a sprint. Remember that MM itself reduces immune health and chemotherapy reduces immune health. Whether we are talking about induction therapy or an autologous stem cell transplant, the more chemotherapy the patient undergoes, the more their immune health is damaged. Much of this damage is long-lasting.

https://www.cancer.org/cancer/managing-cancer/treatment-types/stem-cell-transplant/transplant-side-effects.html#:~:text=Noninfectious lung problems,higher and can be severe.

Many NDMM patients can achieve a deep remission from induction therapy and not have to have an ASCT or simply manage their MM for years with less chemotherapy

Board-certified oncologists, generally speaking, follow FDA guidance. As such, oncology prescribes the standard-of-care therapy plan for NDMM patients. If the newly diagnosed patient doesn’t want or need aggressive treatment, they are at odds with their oncologist.

The typical myeloma clinical trial follows the practice of maximum tolerated dose. The definition of MTD is:

“The highest dose of a drug or treatment that does not cause unacceptable side effects. The maximum tolerated dose is determined in clinical trials by testing increasing doses on different groups of people until the highest dose with acceptable side effects is found.”

First of all, who decides what are “unacceptable side effects!?”

The SOC therapy plan is a lot of chemotherapy and, therefore, a lot of toxicity. SOC induction therapy is a triplet chemo cocktail, each with its own list of possible short-term, long-term and late-stage side effects.

An autologous stem cell transplant is, by definition, high-dose therapy. It is what Dr. Rajkumar, cited in chapter 2, refers to as “multidrug” combinations of therapies.

Many NDMM patients understand that the more toxicity they undergo, the greater the damage done to their bodies and the greater their risk of side effects. Therefore, many NDMM patients want to undergo as little toxicity as possible.

Conversely, many NDMM patients want to treat their blood cancer with a sledgehammer aggressively, side effects be damned. I felt this way when I was first diagnosed.

The median age for a new multiple myeloma diagnosis is around 66–70 years
Less than 1% of cases are diagnosed in people under 35
The five-year survival rate for the stage 1 MM patient is 80%
The five-year survival rate for the stage 3 MM patient is approximately 50%

As you can see, the average ages of MMers at diagnosis and the average MM survival rates vary greatly. Treatment goals will vary as well. Approved therapy plans should reflect this variation.

Reason 2- Treatment of Myeloma- The Cure vs. Control Debate, A Low-Dose Approach to Myeloma

In 2010, I experienced an eureka moment when I read Dr. Vincent Rajkumar’s essay titled Treatment of Myeloma: Cure vs Control. Dr. Rajkumar simply asks two questions about treating MM.

“Should we treat patients with myeloma with multidrug, multitransplant combinations with the goal of potentially curing a subset of patients, recognizing that the risk of adverse events and effect on quality of life will be substantial?”

“Or should we address myeloma as a chronic, incurable condition with the goal of disease control, using the least toxic regimens, emphasizing a balance between efficacy and quality of life, and reserving more aggressive therapy for later?”

At the very least, Dr. Rajkumar a myeloma specialist at the Mayo Clinic in Rochester, Minnesota, questions the idea of a single standard-of-care therapy plan for all standard risk, newly diagnosed myeloma (NDMM) patients.

The 50-year-old stage 1 MM patient and the 70-year-old stage 3 patient have very different cases and will undoubtedly have very different survival outcomes. Each patient will react differently to their induction therapy, experiencing very different side effects. Each NDMM patient should be given the choice of how to treat their MM.

More importantly, many NDMM patients ask their oncologists if they can undergo as little treatment and therefore as little toxicity as possible. Invariably, these patients are pushed to undergo aggressive treatments. NDMM patients are forced to undergo the “cure” side of Dr. Rajkumar’s debate.

When I was diagnosed with myeloma in early 1994, I underwent aggressive treatments, including surgery, radiation, induction chemotherapy, and an autologous stem cell transplant. I relapsed repeatedly and was told I was end-stage by September of 1997.

As a MM survivor living with many treatment-related side effects, I am firmly in the control camp.

I had a similar eureka moment when I first began reading about Dr. James Berenson, also a board-certified MM specialist. Dr. Berenson is outspoken about his dislike of autologous stem cell transplantation for NDMM and prescribes therapy plans that are FDA-approved therapies but administered at much lower doses than the FDA SOC therapy plan.

Dr. Rajkumar questions the FDA SOC therapy plan. Dr. Berenson does not follow the FDA SOC therapy plan and practices therapy plans that outperform the published averages.

Reason 3- Clinical trials are flawed

According to medicine, randomized controlled clinical trials are the gold standard when researching the efficacy of a given therapy.

I can’t speak for other cancers but because MM is a rare blood cancer, oncologists, patients and caregivers often rely on the findings of clinical trials to help them make decisions about their therapy plan.

Why Oncology Can’t Cure Multiple Myeloma Why Oncology Can’t Cure Multiple Myeloma Why Oncology Can’t Cure Multiple Myeloma Why Oncology Can’t Cure Multiple Myeloma

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3 Reasons Why Oncology Can’t Cure Multiple Myeloma

David Emerson

Reason 1- Single Standard-of-Care Therapy Plan for standard-risk newly diagnosed patients

Reason 2- Treatment of Myeloma- The Cure vs. Control Debate, A Low-Dose Approach to Myeloma

Reason 3- Clinical trials are flawed

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