Multiple Myeloma Diagnosis: Key Insights for Patients

Multiple Myeloma Diagnosis: 25 Essential PeopleBeatingCancer Posts for Patients, Survivors and Caregivers

Multiple Myeloma Diagnosis: 25 Essential PeopleBeatingCancer Articles for Patients, Survivors and Caregivers

Multiple myeloma is a complicated blood cancer. A diagnosis can leave patients and families facing unfamiliar words, difficult treatment decisions, conflicting information, and a great deal of uncertainty.

The good news is that you do not have to understand everything at once.

PeopleBeatingCancer has published hundreds of articles about multiple myeloma, drawing on medical research, the experiences of long-term survivors and more than two decades of cancer research and survivorship experience.

This guide brings together 25 of the most important PeopleBeatingCancer multiple myeloma articles in one place as a sort of “primer” for the newly diagnosed MM patient.

Remember that the posts below are written by a MM patient/survivor. My perspective is different from your oncologists.

Important: PeopleBeatingCancer is an educational resource. Information about complementary or integrative therapies should not be interpreted as proof that those therapies can cure multiple myeloma or as a substitute for appropriate medical care.

My name is David Emerson. I am a long-term survivor of multiple myeloma. My research and experience with evidence-based non-conventional therapies are 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 multiple myeloma is to combine the best of conventional and evidence-based non-conventional therapies.

Chances are your oncologist won’t talk to you about evidence-based non-conventional therapies. Conventional oncology focuses on FDA-approved therapies. That’s what they do. But I believe that MM patients and survivors need to know the basics of conventional, complementary, and integrative therapies linked below to manage their incurable blood cancer.

I have come to believe that therapy-induced side effects can be life-threatening while ruining quality of life. For example, more than half of all MMers die of infections. Both MM itself and various chemotherapy regimens cause immunosuppression. 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 MM.

Good luck,

David Emerson

Concepts Central to Managing Your Cancer-

Possible Therapies-

1. Start Here: Multiple Myeloma – Need to Know

If you are newly diagnosed, begin with Multiple Myeloma – Need to Know.

This newer pillar article provides an overview of multiple myeloma, including what the disease is, common symptoms, conventional treatment, and the broader issues patients and caregivers should understand. It is designed to function as a starting point for navigating the rest of the PeopleBeatingCancer myeloma library.

The article also points readers toward diagnosis, treatment, integrative oncology, side effects and financial toxicity.

2. What Is Multiple Myeloma?

Before thinking about treatment, it helps to understand the disease itself.

What Is Myeloma? explains multiple myeloma as a cancer of plasma cells and discusses related plasma-cell disorders including MGUS, smoldering multiple myeloma and plasmacytoma.

Understanding the difference between these conditions is particularly important because MGUS, smoldering myeloma and active multiple myeloma are not interchangeable diagnoses.

3. Multiple Myeloma Basics

For another broad introduction, see Multiple Myeloma Basics.

This article discusses symptoms, diagnosis, treatment, and the long-term nature of multiple myeloma. It also provides a starting point for understanding the difference between conventional treatment and complementary or integrative approaches.

For a newly diagnosed patient, reading this article alongside the newer Multiple Myeloma – Need to Know guide can provide useful background before meeting with a myeloma specialist.

4. Myeloma Diagnosis: What Should You Know?

A multiple myeloma diagnosis raises an enormous number of questions.

Multiple Myeloma Diagnosis – Oncology FAIL! examines the communication challenges that can accompany a cancer diagnosis and emphasizes the importance of understanding exactly what you have been diagnosed with and what your treatment options are.

The larger lesson is simple:

Do not be afraid to ask questions.

You should understand your diagnosis, staging, laboratory results, treatment choices and the potential short- and long-term consequences of therapy.

5. Newly Diagnosed Myeloma: First Steps

PeopleBeatingCancer also has a newer Newly Diagnosed Myeloma- First Steps within its myeloma resources.

This is especially useful for patients who are trying to understand what happens after a doctor first raises the possibility of multiple myeloma.

Ask about the tests being performed, why they are being performed, and what each result means.

6. Multiple Myeloma Stages, Diagnosis and Prognosis

One of the first questions many patients ask is:

“What stage is my multiple myeloma?”

The article Multiple Myeloma Stages, Diagnosis and Prognosis addresses the relationship between diagnosis, staging and prognosis and provides additional resources for understanding multiple myeloma.

Remember that a population statistic is not an individual prediction. Age, cytogenetic risk, disease burden, response to therapy, overall health and many other factors can influence an individual’s course.

7. How Long Can a Person Live With Multiple Myeloma?

Few questions are more frightening—or more important—than:

“How long can I live with multiple myeloma?”

The article How Long Can a Person Live With Multiple Myeloma? explores some of the factors that can influence prognosis, including age, general health and access to multiple myeloma specialists.

The key point for patients is that survival statistics describe populations, not individual people.

Modern myeloma treatment has also changed substantially over time.

8. A Long-Term Myeloma Survivor: What I Wish I Knew

One of the most personal resources in the PeopleBeatingCancer library is Long-Term Myeloma Survivor: What I Wish I Knew at Diagnosis.

The article draws on David Emerson’s experience following a 1994 multiple myeloma diagnosis and discusses diagnosis, staging, treatment, side effects, survivorship and the importance of becoming an informed participant in your own care.

Survivor stories cannot predict what will happen to another patient. But they can provide something statistics cannot:

perspective.

Treatment and Medical Decision-Making

9. Myeloma Standard of Care

Once you understand your diagnosis, the next question is:

What treatment should I receive?

Multiple Myeloma Standard of Care provides an overview of conventional treatment approaches for newly diagnosed myeloma and discusses how treatment has changed over the past several decades.

Treatment decisions should be individualized according to disease characteristics, patient health, risk and treatment goals.

10. Autologous Stem Cell Transplant for Myeloma

For eligible patients, autologous stem cell transplantation can be an important part of treatment.

See Autologous Stem Cell Transplant – Myeloma – What You Need to Know.

The article discusses the transplant process and provides additional resources concerning exercise, side effects and the evidence surrounding transplantation.

Patients should discuss transplant eligibility, timing, potential benefits and risks with a qualified myeloma specialist.

11. Multiple Myeloma Treatment Side Effects

Treating myeloma is not simply about killing cancer cells.

It is also about preserving the patient’s health and quality of life.

Multiple Myeloma Treatment Side Effects addresses the many short- and long-term side effects that can accompany treatment.

Understanding possible side effects before treatment begins allows patients to ask about prevention, monitoring and management.

12. Myeloma Oncologist: 5 Rules

Choosing the right medical team can make a major difference.

Multiple Myeloma Oncologist – 5 Rules discusses questions patients should consider when selecting and working with a myeloma oncologist.

One of the most important questions may simply be:

How much experience does this physician have treating multiple myeloma?

13. Multiple Myeloma – Second Opinion From a Survivor

A second opinion can provide another perspective on diagnosis and treatment.

PeopleBeatingCancer’s Multiple Myeloma – Second Opinion – Survivor approaches the idea of a second opinion from the perspective of a long-term survivor.

This should be viewed as supplementary information, not a substitute for a second opinion from another qualified myeloma physician.

If you are newly diagnosed or facing a major treatment decision, consider asking a myeloma specialist to review your records.

14. Can Multiple Myeloma Go Into Remission?

For many patients, remission becomes the immediate goal of treatment.

Can Multiple Myeloma Go Into Remission? explores remission, ongoing treatment and the uncertainty that can accompany long-term disease management.

Patients should also understand the difference between terms such as complete response, very good partial response, stringent complete response and measurable/minimal residual disease.

15. Gradual vs. Fast Response in Myeloma

The goal of myeloma treatment is often framed as achieving the deepest possible response.

But how quickly a patient responds can also raise questions.

Gradual Response to Initial Treatment May Be a Sign of Better Prognosis in Multiple Myeloma examines research concerning the pace of response.

This is an excellent example of why patients should look beyond a single laboratory value and discuss the larger pattern of response with their oncology team.

Relapse and Long-Term Disease Management

16. Biochemical Relapse of Multiple Myeloma

A rising laboratory marker does not necessarily mean the same thing as symptomatic disease.

Biochemical Relapse – Myeloma – To Treat or Not to Treat? discusses the difficult question of when and how relapse should be approached.

Patients experiencing a biochemical relapse should ask their physicians:

What exactly is changing?
How quickly is it changing?
Do I have symptoms?
What additional testing is needed?
Should treatment begin now?
What are the benefits and risks of waiting?

17. Myeloma Low-Dose Maintenance Therapy

Maintenance treatment is an important part of long-term myeloma management for many patients.

See Myeloma – Low-Dose Maintenance Therapy for a discussion of maintenance therapy and related research.

Maintenance decisions should be individualized. Ask about the expected benefit, duration of treatment, side effects, quality of life and alternative approaches.

Nutrition, Bone Health and Lifestyle

18. Multiple Myeloma Diet

Nutrition is one of the most frequently discussed subjects among cancer survivors.

PeopleBeatingCancer’s Multiple Myeloma Diet discusses nutrition, protein, fruits and vegetables, fiber, processed foods and the gut microbiome. It also makes an important distinction between laboratory evidence and evidence from human clinical research.

That distinction is critical.

A food or supplement that kills myeloma cells in a laboratory is not automatically a proven treatment for people with multiple myeloma.

Nutrition should complement—not replace—appropriate cancer treatment.

19. Multiple Myeloma Diet: Foods to Avoid

Patients frequently ask:

“What foods should I avoid?”

The article Multiple Myeloma Diet – Foods for Survivors to Avoid explores dietary choices from a long-term survivor’s perspective.

Rather than looking for a perfect diet, focus on a sustainable eating pattern that supports adequate calories, protein, fiber, micronutrients, and overall health.

20. Myeloma Diet Before, During and After Therapy

Nutrition needs can change dramatically depending on where you are in treatment.

Myeloma Diet – Before, During, After Therapy discusses nutrition throughout the treatment journey.

For example, a patient preparing for transplant may have very different nutritional needs from a long-term survivor in remission.

21. Multiple Myeloma and the Gut Microbiome

The relationship between cancer and the microbiome is an increasingly important area of research.

See Multiple Myeloma and the Gut Microbiome for an overview of research concerning the microbiome, plasma-cell disorders and myeloma treatment.

The microbiome is especially interesting because it potentially connects nutrition, immune function and treatment response.

But much of this field remains investigational.

22. Multiple Myeloma Bone Health

Bone disease is one of the defining complications of multiple myeloma.

Myeloma Bone Health – Conventional and Non-Conventional discusses bone health and the importance of protecting bones during and after treatment.

Bone health should be discussed with your oncology team, particularly if you have:

Bone pain
Osteolytic lesions
Fractures
Osteoporosis
Hypercalcemia
Reduced mobility

23. Multiple Myeloma and Exercise

Exercise is another major component of survivorship.

Multiple Myeloma – Exercise discusses exercise before, during and after treatment and links to research involving bone health, fatigue, cardiovascular health, neuropathy and cognitive function.

Exercise should be individualized.

A person with significant bone involvement or fracture risk should not simply begin an aggressive exercise program. Ask your healthcare team what types and intensities of activity are appropriate for you.

Alternative and Integrative Myeloma Questions

24. Myeloma and Fenbendazole

Few topics demonstrate the importance of separating scientific evidence from internet enthusiasm better than fenbendazole.

PeopleBeatingCancer’s Myeloma and Fenbendazole? examines the available research and makes an important distinction: laboratory or preclinical findings are not the same as evidence from human clinical trials.

The article’s current conclusion is particularly important for patients considering self-treatment:

There is no established evidence that fenbendazole treats multiple myeloma in humans.

This is exactly the kind of question patients should bring to their oncology team rather than attempting treatment on their own.

25. Conventional, Integrative and Alternative Myeloma Therapies

Finally, Myeloma – Conventional, Complementary, Integrative provides a broader framework for thinking about different categories of cancer therapy.

The most useful way to approach integrative oncology is not to ask:

“Conventional or alternative?”

Instead, ask:

“What combination of evidence-supported approaches can help me control my cancer while protecting my overall health and quality of life?”

That approach leaves room for proven cancer treatment while also addressing nutrition, exercise, symptom management, mental health, sleep, bone health and other aspects of survivorship.

The PeopleBeatingCancer Multiple Myeloma Library

These 25 articles represent only a fraction of the multiple myeloma information available on PeopleBeatingCancer.

The larger myeloma library covers:

Diagnosis and staging
Prognosis and survival
Myeloma specialists
Chemotherapy
Immunotherapy
Stem cell transplantation
Maintenance therapy
Relapsed and refractory myeloma
Minimal residual disease
Bone health
Anemia and fatigue
Neuropathy
Nutrition
Supplements
Exercise
Gut microbiome research
Mind-body therapies
Financial toxicity
Long-term survivorship
Treatment-related side effects
Experimental and repurposed therapies

The goal is not to overwhelm you with information.

The goal is to help you ask better questions.

What Should a Newly Diagnosed Myeloma Patient Do First?

If you have just received a multiple myeloma diagnosis, consider working through the information in this order:

Step 1: Understand your diagnosis

Start with Multiple Myeloma – Need to Know and What Is Myeloma?.

Step 2: Understand your specific disease

Ask about your stage, cytogenetic risk, laboratory results, imaging and other diagnostic information.

Step 3: Find a myeloma specialist

Multiple myeloma is a relatively uncommon cancer. Consider asking whether a physician who specializes in myeloma should participate in your care.

Step 4: Get a second opinion

A second opinion can be especially valuable before beginning a major treatment program such as transplantation.

Step 5: Understand your treatment

Learn what your proposed treatment is intended to accomplish, how success will be measured and what side effects may occur.

Step 6: Protect the rest of your health

Nutrition, physical activity, sleep, mental health, bone health and cardiovascular health matter too.

Step 7: Think beyond the first treatment

Multiple myeloma is generally managed as a long-term disease. Your treatment plan may change over time.

The Most Important Myeloma Lesson

Perhaps the most important lesson from decades of living with multiple myeloma is this:

Do not make your cancer treatment decisions from fear alone.

Learn your diagnosis.
Learn your options.
Learn the evidence.
Ask questions.
Get another opinion when appropriate.

And remember that a cancer treatment plan is about more than treating cancer cells. It is also about helping you live as well and as long as possible.

PeopleBeatingCancer’s multiple myeloma library is designed to help patients, survivors, and caregivers become better-informed participants in that process.

A Note About Evidence

Multiple myeloma research changes rapidly. Some PeopleBeatingCancer articles discuss conventional therapies with established clinical evidence, while others discuss emerging, complementary, integrative or experimental approaches.

Those categories should not be confused.

A promising laboratory study is not equivalent to a randomized clinical trial.

A survivor story is not proof of treatment effectiveness.

An association is not necessarily causation.

And a therapy being studied does not mean it has been proven effective.

Use the information in these articles as a starting point for questions and further research, and discuss treatment decisions with qualified healthcare professionals.

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