What I wish I knew about Multiple Myeloma treatments 25 years later...

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Beating Myeloma: “If I Knew Then What I Know Now”

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Newly Diagnosed Multiple Myeloma Patients Don’t Know What They Don’t Know- MM Cancer Coaching provides answers to your questions-

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I was diagnosed with multiple myeloma (MM), in February of 1994. I was told that my cancer was incurable.

According to the American Cancer Society the average life expectancy of a newly diagnosed MM patient is 5-7 years.  The first thing that I had to learn as a newly diagnosed cancer patient was that average survival statistics can be extremely misleading.

I have been living with multiple myeloma since February of 1994. I have lived in complete remission from my MM since  April of 1999.

Incurable? Complete Remission? Relapse? My experience is that the first mountain that newly diagnosed MM patients, survivors and caregivers must climb is the jargon of cancer terminology. The language of conventional oncology is almost a foreign language to average people.

Before you can make any decisions about your treatment you must learn about your:

  • diagnosis,
  • prognosis,
  • evidence-based mind-body therapies,
  • conventional (FDA) therapies,
  • evidence-based non-conventional therapies,
  • health insurance (financial costs to you),
  • and more.

In addition to being a long-term MM survivor I am a Myeloma Cancer Coach. I combine research and experience to support multiple myeloma patients, survivors and caregivers. I view MM from the cancer patient’s perspective not from the oncologist’s perspective.

Have you been diagnosed with multiple myeloma? What stage, any organ damage? What symptoms are you experiencing? What are your goals? Scroll down the page and post a question or a comment.

I will reply to you ASAP. I will send you a PDF of the  Introduction to Beating Myeloma-“If I Knew Then What I Know Now. The Intro to my e-book is yours to keep. If you become a member of PeopleBeatingCancerCoaching you will receive a free copy of Beating Myeloma: “If I Knew Then What I Know Now.

Thanks,

David Emerson

  • MM Survivor,
  • MM Cancer Coach
  • Director PeopleBeatingCancer

Table of Contents-

Introduction

Chapter 1- My Story and a Question

Chapter 2- Autologous Stem Cell Transplant (ASCT) vs. Novel Chemotherapies

Chapter 3 Prehabilitation

Chapter 4 Anti-MM and Integrative Supplementation

Chapter 5Clinical Trials

Chapter 6Clinical Trials Cont.

Chapter 7The Great Eight-Super Myeloma Specialists

Chapter 8The Cure vs. Control Debate-as real as it gets…

Chapter 9 – Long-term Therapy Plan?

Chapter 10The Burzynski Research Institute (BRI), Antineoplastons (ANP) and Myeloma

Chapter 11Phone Consultation and questions for Dr. Berenson

Chapter 12Too High a Dose of Chemotherapy?!

Chapter 13Dr. Berenson says that ASCT Don’t work!?

Chapter 14– Dr. Berenson says ASCTs Don’t Work!?

Chapter 15– My numbers are skyrocketing again-

Chapter 16– It’s time to make a decision-

Chapter 17– I’m still not sure what I’ll do-

Chapter 18– I’ll start with a stem cell retrieval

Chapter 19– Going to Houston on Saturday

Chapter 20– Integrative Therapy for Adriamycin and Cytoxan

Epilogue

Appendix-A Long-term MM Caregiver’s Perspective

Acknowledgements-

Introduction

Newly diagnosed multiple myeloma (MM) patients are told MM is an incurable but treatable blood cancer. That’s what my oncologist told me when I was diagnosed in January of 1994. Telling a patient that he/she has an “incurable but treatable” cancer and then jumping right into non-curative therapies is misleading at best and does a disservice to the newly diagnosed MM patient. This book explains why conventional MM oncology is misleading and what the newly diagnosed MM can do about it.

The statistical jargon used by oncology features the phrase 5-year survival rate. While conventional oncology has increased the length of remissions for a small percentage of the youngest and healthiest myeloma patients, the average life expectancy of a newly diagnosed MMer, according to the American Cancer Society, is 4-7 years depending on your stage at diagnosis.

The 5-year survival rate for multiple myeloma is less than 50%. Fewer than half of newly diagnosed MM patients will live for five years.

When I found out I had MM I knew nothing about my cancer. I had never even heard of a cancer called multiple myeloma. I never questioned my oncologist’s instructions. I never considered evidence-based, non-conventional therapies. I left every decision about my body and health to a relative stranger. 

My ignorance about my own cancer diagnosis was an ongoing mistake from my diagnosis in 2/94 through my diagnosis of end-stage MM in 9/97. 

In the spring of 1995 I began my induction  chemotherapy cocktail called VAD (Vincristine, Adriamycin, Dexamethasone). My tumor burden was reduced. Several months later I underwent Cytoxan chemotherapy. My MM was further reduced. A few months later I hit my cancer hard with an Autologous Hematopoietic Stem Cell Transplant aka high dose chemotherapy. I achieved a partial remission and left the hospital after 19 days.

I understood that I wasn’t cured but I had undergone 10 months of aggressive treatment. My oncologist, working at one of the finest hospitals in the United States, had given me aggressive radiation and seven different chemotherapy regimens over a period of seven months. 

I leveraged the full power of millions of research dollars and decades of research. My treatment cost my insurance company several hundred thousand dollars. I expected at least an average remission.

My cancer relapsed after 10 months. I underwent palliative radiation. When my cancer reappeared again nine months later, in September of 1997,  my oncologist told me that there was nothing more that she could do for me.

At this point I need to clarify that I consider oncologists to be well-educated, well-meaning clinicians. By law, board-certified medical doctors can only prescribe therapies that are approved by the Food and Drug Administration (FDA). I found most of my doctors and nurses to be wonderful people.

Being given a terminal diagnosis after almost four years of treatment was devastating but not surprising, statistically speaking. If  I would live as a terminal patient for another year or so, I would achieve about a five-year life expectancy.

My decision to take responsibility for my own health took hold of me in the weeks following the appointment with my oncologist when Dr. Rassiga told me that there was nothing more that she could do for me.  I found that the five stages of grief applied both to when someone close to you dies and also when you have been told that you are going to die.

I moved through the five stages of grief in a rapid succession. The first two stages, denial and anger, came and went in a couple of days. I came to understand that remissions and relapses were a common occurrence for MMers. Once I realized that my problem was my expectation, not the facts, I woke up. I had read the average five year survival statistics. But I thought I would be different. Hearing my oncologist tell me in no uncertain terms that I was NOT different and that I was terminal had a chilling effect on my thinking. I came down to earth in a hurry.

The final three stages of grief, bargaining, depression and acceptance came slowly in the weeks and months to come. The more I learned about my cancer treatment the more disillusioned I became about the practice of conventional oncology when it comes to multiple myeloma.

Curative and adjuvant cytotoxic chemotherapy adds less that 3% to the overall contribution of 5-year survival in adults-

Most cancer patients don’t understand the risks of their therapy- 

The key to understanding conventional oncology is to learn the realities about cancer care in the United States. While the world of cancer is overwhelming for the newly diagnosed MM patient,  I gained tremendous insight into my MM experiences by learning about the four topics below:

  • Cancer Research
  • Cancer Statistics
  • Evidence-based Medicine
  • The Cure versus Control Debate in MM

Here’s what I learned about each.

Cancer Research 

Raising or donating money for cancer research is a wonderful concept. The average donor has every reason to believe that his/her jogging, walking, or donation is paying for cancer questions to be asked and answered.  However, few people would contribute their time and money if they understood that conventional cancer research, as the studies published in Cancer Research show, might not actually benefit cancer survivors and caregivers.

Cancer Statistics

When I the read the article linked above in Cancer Statistics a light bulb went off in my head. Years of reading and confusion about the causes and treatments or cancer became clear.

What do these headlines have in common?

“People who use sunbeds are 20% more likely to develop malignant melanoma”

“CT scans in childhood can triple the chance of developing brain cancer”

“One drink a day increases breast cancer risk by 5% ”

They’re all statements of the relative risk of developing cancer. They tell us how much more, or less, likely the disease is in one group, compared to another.

But none of the headlines say anything about the overall likelihood of any of these events happening – the absolute risk.  What are the chances of developing breast cancer if you don’t drink alcohol at all? I realized that an article or study that contains information about relative risk of a therapy or a treatment without also explaining the absolute risk at best gave me little information of value and at worst was misleading.

Evidence-based Medicine

Evidence-based medicine (EBM) is an approach to medical practice intended to optimize decision-making by emphasizing the use of evidence from well-designed and conducted research.

The challenge that cancer patients, survivors and caregivers face is what they consider “evidence from well-designed and conducted research” versus what their oncologist considers “evidence from well-designed and conducted research. 

Conventional oncology and the Food and Drug Administration (FDA) consider only clinical studies as worthy of evidence-based medicine.  I consider the thousands of peer-reviewed studies conducted annually to help me manage my cancer to be “evidence from well-designed and conducted research.”

I regularly consult the United States National Library of Medicine through their online resource called PubMed. My cancer coaching clients receive regular doses of studies supporting the various evidence-based therapies that I promote. If I am interested in learning about how an integrative therapy called curcumin interacts with a common MM chemotherapy called Velcade, I consult Pubmed.

Years of living as a cancer survivor have taught me that my definition of evidence-based medicine is fundamentally different from conventional oncology’s definition of evidence-based medicine.

When I was told that nothing more could be done for me I now understand that there were no conventional therapies (FDA approved therapies) that would control my MM. There were many therapies that were supported by research that showed they might kill my cancer. But there were no FDA approved therapies that would kill my MM.

If cancer research is flawed then the evidence and decision-making that results from it can also be flawed. If the research is limited to clinical studies then the options of cancer patients is limited.

I now believe that MM patients living with incurable cancer can’t afford to have their options limited to only FDA approved therapies. 

My aggressive, toxic, expensive high-dose chemotherapy and radiation was an FDA-approved nightmare that failed to keep my cancer in remission and led to life-threatening short, long-term and late-stage adverse events aka side effects.

My experience since my original diagnosis in January of 1994 to the writing of this book has led me to the conclusion that multiple myeloma must be managed through evidence-based conventional and evidence-based non-conventional treatments. 

The challenge is for newly diagnosed myeloma patients to figure out which of these therapies to undergo and how much of these therapies to undergo. 

The Cure vs. Control Debate in Multiple Myeloma

Attempts to cure myeloma typically employ high-dose therapy (HDT) combined with autologous stem cell transplantation (ASCT).

Control therapy involves balancing quality and quantity of life by administering a long and growing list of conventional chemotherapy drugs, among them Thalidomide, Velcade, Revlimid, Cytoxan, Melphalan, Darzalex, Kyprolis, Doxorubicin and Dexamethasone to name a few, often in combinations aka doublet or triplet chemo cocktails.

The discussion of the cure vs. control debate is carried out below via an actual cancer coaching interaction between me and Mary (not her real name), a newly diagnosed myeloma patient at the time.

The past 25+ years have taught me that conventional oncology doesn’t scratch the surface in communicating what newly diagnosed cancer patients need to know to manage their lives as cancer patients.

Some of the therapies that MM patients must utilize to manage their cancer are:

  • Nutrition (diet), 
  • Nutritional supplementation, 
  • Integrative therapies, 
  • Lifestyle therapies, 
  • Bone health therapies and 
  • Mind-body therapies 

Each myeloma patient’s case is unique. It will be your individual issues and goals that necessitate a complete therapy plan. Your goals, age, stage at diagnosis, genetic make-up, symptoms, and general health all deserve careful consideration.

I credit a host of evidence-based, non-toxic MM therapies that I pursue daily, weekly, etc. to have helped me remain in complete remission from my MM since 1999. 

The anti-MM lifestyle that I lead is based on the five pathways listed below:

• Warburg Effect

Chronic Inflammation- 

Angiogenesis-

Nutrigenomics-

The goal of this e-book is to present the key issues you must confront as a multiple myeloma patient.  It prepares you by explaining the basic issues as well as the terms and medical jargon that you will face. Learning the key concepts will help you ask the right questions for your individual situation. Only by asking the right questions can you make informed decisions that help increase the quality and length of your life. I know it sounds trite but knowledge is power. This book gives you power over MM.

If you are a myeloma patient, survivor, or caregiver, you must take responsibility for your health and learn as much as possible about the full spectrum of evidence-based cancer therapies. Only then can you make the best decisions.

Read, learn and heal.

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