Multiple Myeloma Archives

Plasma cells are cells in the immune system that make antibodies, which help the body fight infection and disease. Multiple myeloma cells are abnormal plasma cells (a type of white blood cell) that build up in the bone marrow and form tumors in many bones of the body.

More resources for Multiple Myeloma from Patient Empowerment Network.

How Side Effects Can Be Managed in Myeloma

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How Side Effects Can Be Managed in Myeloma from Patient Empowerment Network on Vimeo.

Beth Faiman, a nurse practitioner specializing in multiple myeloma, discusses side effects in myeloma and shares what can be done to prevent or reduce these issues in patients.

Beth Faiman is a nurse practitioner in the department of hematologic oncology at Cleveland Clinic. More about this expert here.

See More From The Pro-Active Myeloma Patient Toolkit

Related Resources

Office Visit Planner – Myeloma

Discussing Treatment with Your Doctor: Key Questions to Ask

Diagnosed with Myeloma? An Advocate’s Key Advice

Transcript:

Beth Faiman:

In multiple myeloma, there are numerous side effects, but the most common side effects of treatment are oftentimes the lowering of blood count. So, for example, depending on which type of therapy you’re on, maybe it’s lenalidomide or carfilzomib or some others, you can get some lowering of blood count.

So, those blood counts need to be regularly monitored. Another side effect might be peripheral neuropathy. Now, that’s more common in drugs such as bortezomib or thalidomide.

And so, it’s important to look for that symptom and report if you have any numbness or tingling in your fingers or feet, or dizziness, or anything odd to your healthcare team. Because by adjusting the medication doses, then those patients can actually stay in treatment longer with better control.

Other things with the monoclonal antibodies, some of the newer drugs that are currently available will produce an increased chance of infusion reactions. Now, that’s only at the very beginning of the infusion. So, once patients have received that therapy,  they can feel comfortable to keep taking that with lesser chance of side effects.

And then, finally, many drugs with myeloma have an increased risk of blood clots. So, patients should stay active, keep well-hydrated, and know that they’re at an increased risk. Most providers will recommend a baby aspirin for all patients taking these drugs like lenalidomide, thalidomide, pomalidomide, and carfilzomib. And that’ll lessen their chance of blood clots.

The last thing I’d like to add in is an increased risk of infections. Myeloma is a cancer of the bone marrow plasma cells that are responsible to protect you from getting sick, and unfortunately, they don’t work. Many therapies will further weaken the immune system. So, getting a seasonal influenza vaccine, a pneumonia vaccine every five years, and making sure they take shingles prevention is a very effective way of keeping yourself healthy.

Lab Tests in Myeloma: Key Results to Monitor

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Lab Tests in Myeloma: Key Results to Monitor from Patient Empowerment Network on Vimeo.

Nurse practitioner, Beth Faiman, discusses laboratory tests for multiple myeloma, including which results should be monitored closely and how different labs may vary.

Beth Faiman is a nurse practitioner in the department of hematologic oncology at Cleveland Clinic. More about this expert here.

See More From The Pro-Active Myeloma Patient Toolkit

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Get The Best Myeloma Care NOW: A Physician’s View 

Discussing Treatment with Your Doctor: Key Questions to Ask

Overwhelmed By a Myeloma Diagnosis? The Key Steps to Take

Transcript:

Beth Faiman:

Laboratory results can be quite anxiety-provoking for some patients and others are pretty easygoing about it. One of the most important things I share with patients whether they come to see me every month, every three months, or sometimes we share care with referral providers is always take ownership of your own care.

You are your best advocate and it’s important to find out what kind of myeloma you have and what they myeloma specialist thinks is important in monitoring your labs. So, for example, there are kappa and lambda light chains, and everybody has a different form of myeloma. Find out the best way that they can monitor their myeloma. Also, key lab results like blood creatinine level, reflect kidney function, hemoglobin carries oxygen and that’s your anemia number. So, finding out those important key lab values and keeping track of them over time can help feel — patients feel empowered often times in their care.

But with that, I always have the caveat, take the results with a grain of salt because there are lab variations within one’s own institution or when you’re going outside of institutions if we partner with care. So, that can be about 20/25 percent lab error each month depending on the test result.

Lab values can fluctuate quite rapidly. So, if I draw a serum creatinine level in the morning, and it might be high indicating kidneys might not be functioning normally, I can encourage them to have some hydration or — and then recheck that lab value and it might go down. The same with the serum-free light chains and M-Spikes.

The lab variation within a single day can be very, very, very diverse. So, it’s important to say, hey gosh, it’s abnormal one day or one hour of the day, but then the next time it can be normal. Or normal for you a well, because there are normal values for one patient that’s abnormal for the other, and vice-versa.

Key Considerations When Choosing Myeloma Treatment: What’s Available?

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Key Considerations When Choosing Myeloma Treatment: What’s Available? from Patient Empowerment Network on Vimeo.

Beth Faiman, a nurse practitioner specializing in multiple myeloma at the Cleveland Clinic, shares tips for making treatment decisions and discusses the evolution of myeloma therapy in recent years. Need help speaking up? Download the Office Visit Planner and bring it to your next appointment here.

Beth Faiman is a nurse practitioner in the department of hematologic oncology at Cleveland Clinic. More about this expert here.

See More From The Pro-Active Myeloma Patient Toolkit

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Related Resources

    

The Benefits of Seeking a Second Opinion in Myeloma

Find Your Voice Myeloma Resource Guide

Overwhelmed By a Myeloma Diagnosis? The Key Steps to Take

Transcript:

Beth Faiman:

There are so many treatment options, and that’s one of the reasons why it’s so important for patients to at least seek an opinion once or twice with a myeloma specialist because treatment changes so rapidly. We have over 20 medications that are approved for the management of myeloma and so the patients need to figure out what’s important for them.

Oftentimes you think, father knows best or doctor knows best. And I hear from time to time that you’re the doctor, you should know what is best for me. But I say, “I understand what might be the best treatment for you in terms of response rate, but we have to balance quality and quantity of life. What are the things that you’re willing and your family’s willing to accept for treatment?”

Do you want to undergo a stem cell transplant which maybe takes you out of commission for a couple of months? Or take an oral therapy every day or an IV therapy intermittently? So, there are oftentimes more than one decision, and this is what we like to practice at my institution. It’s called shared decision making where you have a partnership between the patient and their caregiver, and the healthcare team and we work together to mutually decide what’s best for that patient.

So, sometimes just really trying to get that cure or eliminate the myeloma cell clone as best as possible might not be the right answer now, especially if you’re a single mom or a single dad or caring for a loved one. But maybe that might be a future goal. So, having that conversation is so important. And patients should feel empowered to be able to have that conversation with their healthcare team because if they don’t, then maybe they need to see a different doctor or specialist so they can feel comfortable with them.

I am so excited about all the new classes of drugs that are so — that are currently available. When I started managing myeloma in 1994 or 1995 there was only stem cell transplant and maybe melphalan or Cytoxan, and those drugs were not very effective in controlling the disease. I’m now able to mix and match treatments and give patients different opportunities to meet these milestones. You know, patients were so worried about not being here in two or three years, and now it’s 20 years later. So, forming those relationships and keeping them living healthy longer is so important.

We now have drugs available that can have the possibility of achieving what’s called minimal residual disease or MRD, where we’re eliminating in the bone marrow, the myeloma clone

That was unheard of five years ago even. So now we have the BiTE therapies and CAR T-Cell therapies, and some of the newer drug classes that will hopefully have a functional cure.

People ask me what a cure in myeloma is, and hopefully, we’ll have a real cure. But, living out your normal life span compared to people that don’t have myeloma, and really enjoying life as you do it. So, I always tell patients don’t forget about health maintenance and checking cholesterols, looking for secondary cancers, keep a primary care provider on hand because as a team, we can all work together, to have you live your best life as possible.

Diagnosed with Myeloma? Why to See a Specialist and What to Expect

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Diagnosed with Myeloma? Why to See a Specialist and What to Expect from Patient Empowerment Network on Vimeo.

Beth Faiman, a nurse practitioner specializing in multiple myeloma, provides insight into her relationships with patients and the importance of seeking a second opinion with a specialist, even for just a single consultation.

Beth Faiman is a nurse practitioner in the department of hematologic oncology at Cleveland Clinic. More about this expert here.

See More From The Pro-Active Myeloma Patient Toolkit

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Multiple Myeloma Office Visit Planner

Should You Consider a Second Opinion? Advice From a Myeloma Advocate

What is Personalized Medicine?

Transcript:

Beth Faiman:

So, my role in treating patients with multiple myeloma is very variable. So, I am a member of a treatment team. I have doctors that I work with, as well as nurses, other nurse practitioners, and social workers.

Sometimes I’m the first face that patients will see when they come to the cancer center. And hopefully, I’ll be fortunate to follow them along with their treatment trajectory.

Some of the other things that I do for patients who have multiple myeloma  — I’m involved in the diagnosis and management of their care. I am responsible for obtaining and reviewing their laboratory results at each visit, and if they have a certain symptom that needs to be controlled, I am oftentimes the one that they call or reach out to for some answers.

I think it’s very important for patients to meet with a myeloma specialist at least once. I understand there are a lot of barriers from transportation to finances to just not feeling comfortable with going to an outside institution. But working at a major center which focuses on multiple myeloma for the last 20-plus years, I can really see the value in even just getting an opinion.

So, one of the things I try to encourage is for patients to come and meet with us once or twice because not only are we educating the community physician, but we’re also partnering in their care. So, if they’re getting an injection once or twice weekly, we can see them every couple months, review their laboratory values, and they can get care closer to home. And so, there’s that partnership that forms and then you’re not only educating the patient, but you’re oftentimes educating the community physician or provider that might only see one or two myeloma patients in a year.

So, when patients come to me all they know is that they’re in a cancer center. Oftentimes they have to go on whatever information they’ve been told. I see consultations independently at the Cleveland Clinic so sometimes they’ve been told by their outside physician or nurse practitioner that they might have a blood cancer. Sometimes they fall into a category of patients that have what’s called MGUS or monoclonal gammopathy, so these individuals might not even need treatment forever.

Others might have what’s called smoldering myeloma, which is a different second level, and those patients might need treatment within two to five years. But for those that have been told they have multiple myeloma, there’s a myriad of emotions, and oftentimes I like to take time, share with them first what I know about their case, get time to know them on a one-on-one basis. What they like, what they don’t like, what they do for a living, their hobbies. Because you’re building a relationship.

You might be with that patient for many, many years. So, taking the time to let them know what I know about their case, finding out about themselves, and then pooling it all together with what we need to do now, with this information is oftentimes a good way to start a relationship with the patient and their caregiver.

Evolving Approaches to Myeloma Treatment: Staying Up-to-Date

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Evolving Approaches to Myeloma Treatment: How to Stay Up-to-Date from Patient Empowerment Network on Vimeo.

Multiple myeloma research is fast-moving and showing promise. Dr. Peter Forsberg, a myeloma specialist, provides an overview of the changing treatment landscape and shares resources for keeping up with the latest news. Need help speaking up? Download the Office Visit Planner and bring it to your next appointment here.

Dr. Peter Forsberg is assistant professor of medicine at the University of Colorado School of Medicine and is a specialist in multiple myeloma. More about Dr. Forsberg here.

See More From The Pro-Active Myeloma Patient Toolkit

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Find Your Voice Myeloma
Resource Guide

Staying Abreast of the Latest News in Myeloma: Tips from an Advocate

What is Personalized Medicine?

Transcript:

Dr. Peter Forsberg:

I think research in multiple myeloma remains a really active area. It’s been a major evolution over the past 20 years. Myeloma’s been one of the real success stories of modern oncology in terms of how much research has translated into improved options for patients.

But, many new things continue to evolve. It can be challenging to feel like you’re abreast of what’s going on. I think there are great resources for patients. Organizations like the International Myeloma Foundation, the Multiple Myeloma Research Foundation, or Leukemia and Lymphoma Society are good places for patients to start.

I also think that social media can be useful although those types of things can be a bit of a double-edged sword. I certainly find lots of things out via Twitter, and I think there’s a pretty active myeloma community in some of those areas, but you have to be a little bit careful about where you point your attention when you’re interacting with the internet. I think there can be lots of places where you might get less up to date or less thorough information and that can sometimes be concerning or challenging for patients So, I do think it is great that we have tools, but it is important to be thoughtful about how you approach them and trying to find good, reliable resources in that regard.

 I think there’s a lot of really exciting things on the horizon. That’s gonna include using tools that we have in better ways. I think we’re gonna be expanding our approaches to how we treat newly diagnosed patients. It looks like we’ll be starting to use four-drug regimens in patients with newly-diagnosed myeloma in the near future, hopefully with ever-improving results. We’re gonna be more cutting edge in terms of how we test and measure disease, using things like minimal-residual disease testing in different and expanded ways.

And then there’s a number of immunotherapeutic treatments especially that are looking very promising in relapsed myeloma.

That includes CAR T-Cell therapies, bispecific monoclonal antibodies, and antibody drug conjugates, all of them look like really promising approaches and really new things that hopefully in the not-distant future are gonna expand our toolbox for how we’re able to help maintain and improve life for patients with multiple myeloma.

What Does Remission Mean in Myeloma?

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What Does Remission Mean in Myeloma? from Patient Empowerment Network on Vimeo.

The concept of remission in multiple myeloma can be complex. Myeloma specialist, Dr. Peter Forsberg explains. Want to learn more? Download the Find Your Voice Resource Guide here.

Dr. Peter Forsberg is assistant professor of medicine at the University of Colorado School of Medicine and is a specialist in multiple myeloma. More about Dr. Forsberg here.

See More From The Pro-Active Myeloma Patient Toolkit

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Relapsed and Refractory Multiple Myeloma: What’s the Difference?

  

Hesitant to Join a Support Group? Encouraging Advice from an Advocate

What is Personalized Medicine?

Transcript:

Dr. Peter Forsberg:

I also think that one thing that can be a little challenging in multiple myeloma is the concept of remission. I think in multiple myeloma what we think of as remission may be a little bit different than in other diseases, and I know that can be confusing for patients. Remission may just mean an interval of myeloma control. It may still be a time where you’re on active therapy or where the active therapy that you’re receiving hasn’t changed too substantially, but where the myeloma is under control whether it’s still detectable or not. So, that name can be a little bit different than what we think of as remission in other types of cancer and that can be a little confusing.

Fertility Preservation in People with Cancer

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This podcast was originally published by Cornell Weill Cancer Cast, on March 22, 2019, here.

Connect with Myeloma Groups

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This resource was originally published by Myeloma Crowd here.

CONNECT WITH THE MYELOMA CROWD

Myeloma Crowd is a division of the CrowdCare Foundation and is a registered 501(c)3 non-profit, tax ID 45-5354811. Contact us at info@crowdcare.org. For donations, please donate online to the MCRI project here or mail checks to:

CrowdCare Foundation
PO Box 1286
Draper, UT 84020

 

JOIN MYELOMA FACEBOOK GROUPS

Click on the group names below to find the support you need.

MULTIPLE MYELOMA SPANISH SITE

mielomamultiple.org

Financial Assistance Programs

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These resources were originally published by Myeloma Crowd here.

Financial Resources

Before starting treatment, patients and their caregivers should meet with the financial counselor at the facility where they will be treated. Each hospital will have its own financial counselor within each specific clinic (like the myeloma clinic or myeloma/lymphoma clinic). The counselor will help determine coverage and estimate out of pocket costs. There may be restrictions on treatment options covered by Medicare and Medicaid. After you have met with the counselor, the resources below can help bridge financial gaps.

Myeloma advocate and financial planner Diahanna Valentine helped compile this list of helpful financial resources. To contact Diahanna for professional assistance, email her at dtvallentine@gmail.com. 

Pharmaceutical Company Patient Assistance Programs

Amgen Assist 360  (1-800-28-AMGEN) (Kyprolis, Xgeva, Neupogen, Neulasta)

BMS Access Support (1-800-861-0048) (Empliciti)

Celgene Patient Support (1-800-931-8691, EXT 4077) (Revlimid, Pomalyst, Thalomid)

Genentech  (1-888-941-3331) (Venclexta)

(800-609-1083) (Doxil, Darzalex)

Novartis Patient Assistance (1-800-245-5356) (Farydak, Zometa)

Takeda Oncology (1-844-817-6468) (Ninlaro, Velcade)

Other Patient Assistance Programs

Be The Match (Post-transplant financial assistance)

CancerCare

CephalonCares Foundation

HealthWell Foundation

Help with Paying Bills

The Leukemia & Lymphoma Society’s Co-pay Assistance Program

Patient Financial Aid

The Max Foundation

National Cancer Institute

National Organization for Rare Disorders

NeedyMeds

Patient Access Network Foundation

Patient Advocate Foundation

Patient Advocate Foundation Co-Pay Relief Program

Ronald McDonald House Charities

Basic Living Expenses

American Childhood Cancer Organization

American Life Fund
The Bone Marrow Foundation

The CHAIN Fund Inc

Child Care Expenses

Family Reach Foundation

The Bone Marrow Foundation

CancerCare

Equipment /Supplies Expenses

American Kidney Fund

CancerCare

Lymphoma Research Foundation

Stupid Cancer

Government Assistance

Benefits.gov

Centers for Medicare & Medicaid Services

Eligibility.com (Medicare Resources)

Legal Services Corporation

Social Security Administration

Social Security Disability Resource Center

U.S. Department of Veterans Affairs

Home Health Care Assistance

AVON Foundation for Women

The Bone Marrow Foundation

CancerCare

Brenda Mehling Cancer Fund

Stupid Cancer

Housing During Treatment

American Cancer Society (Hope Lodges)

The Bone Marrow Foundation

Healthcare Hospitality Network Inc

Hospitality Homes

Joe’s House

Lymphoma Research Foundation

Insurance Premium Expenses

American Kidney Fund (dialysis patients)

American Life Fund

The Bone Marrow Foundation

CancerCare Co-Payment Assistance Foundation

The CHAIN Fund Inc

Fifth Season Financial Assistance

HealthWell Foundation (diagnosis-specific)

Patient Advocate Foundation Co-Pay Relief

Patient Services, Inc

Stupid Cancer

Legal Issues

American Bar Association

Cancer and Careers

Cancer Legal Resource Center

LawHelp.org

Legal Services Corporation

National Coalition for Cancer Survivorship

National Health Law Program(links to assistance programs)

Patient Advocate Foundation

Social Security Disability Resource Center

Medical Care Expenses

American Life Fund

Be the Match

The Bone Marrow Foundation

CancerCare

Cancer Warrior, Inc

Fifth Season Financial Assistance

Foundation for Health Coverage Education

Leukemia and Lymphoma Society

Patient Access Network Foundation

Patient Advocate Foundation

Post-Treatment Financial Needs

Be The Match

Stupid Cancer

Prescription Expenses

The Bone Marrow Foundation

CancerCare Co-Payment Assistance Foundation

Cancer Financial Assistance Coalition

The CHAIN Fund Inc

Foundation for Health Coverage Education

GoodDays

HealthWell Foundation

The Leukemia & Lymphoma Society

Needy Meds

Patient Access Network Foundation

Patient Advocate Foundation Co-Pay Relief

RxAssist

RxHope

RxOutreach

Together Rx Access

Transportation and Travel Resources

Angel Flight

Air Charity Network

American Cancer Society (Road to Recovery)

Angel Airline Samaritans

Angel Airlines for Cancer Patientsrg

Angel Flight Central

CancerCare

Chai Lifeline

Corporate Angel Network

Family Reach Foundation

Lifeline Pilots

Lymphoma Research Foundation

Mercy Medical Angels

National Patient Travel Center

Veterans Airlife Command

Co-pay Assistance Programs & Concerns – Myeloma

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This video was originally published by Myeloma.org on Mar 31, 2017, here.

Recently, the International Myeloma Foundation’s InfoLine has been flooded with calls from patients and caregivers facing insurmountable financial challenges due to the high cost of drugs and increases in insurance copays. In the past, several services have been available to provide financial assistance to patients. We understand that funds for co-pay assistance are difficult to come by, and available funding will likely dry up quickly.

DOWNLOAD SLIDES

New Developments in Myeloma Therapy

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This podcast was originally published by The Cancer Cast with Weill Cornell here.

 

 

Adriana Rossi, MD – Speaker Bio

Know What Your Doctors Know: Multiple Myeloma

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This video was originally published by the National Comprehensive Cancer Network on April 15, 2019, here.

Experts discussed updates in the treatment of multiple myeloma during live webinars hosted by the National Comprehensive Cancer Network (NCCN) on April 15 and 16, 2019.

Essential Tests for Diagnosis and Monitoring

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This resource was originally published by International Myeloma Foundation here.

Multiple myeloma tests are diverse and complex. Tests are used throughout the course of your disease — for initial diagnosis, discovering the type of myeloma you have, staging the disease, and for monitoring your response to treatment.

What Can Tests Tell Us?

Tests results are the most important tools that your doctor will use to:

  • Diagnose monoclonal gammopathy of undetermined significance (MGUS), smoldering multiple myeloma (SMM), and active myeloma.
  • Assess the risk of progression of MGUS or SMM to active myeloma.
  • Assess the stage of your myeloma.
  • Assess your genetic risk factors.
  • Evaluate your response to treatment.
  • Monitor remission periods and determine when to start treatment again.
  • Monitor for disease-related and treatment-related side effects.

Tests for multiple myeloma patients fall into three major categories:

  • Blood and urine tests
  • Bone marrow tests
  • Imaging studies

No Single Test Tells the Whole Story

Each test can be thought of a piece of puzzle. Only when the pieces are assembled together can a patient and their doctor make their proper conclusions and decisions. Myeloma is unique in each patient; therefore, it’s important not to compare your test results with other myeloma patients.

We encourage you to discuss all your test results with the doctor who is treating you. Your doctor will be able to put all the puzzle pieces together to put your results in context. The patterns of results viewed over time are more meaningful than any single test itself.

Save Copies of Your Test and Lab Results

It is important to request, print out, and save copies of your results. Bring a summary of results with you when you to all oncology visits or when getting a second opinion.

Variables That May Affect Your Test Results

Be aware that your lab results can be affected by many variables, including:

  • other medications and supplements that you may be taking
  • the amount and type of fluids you have consumed
  • whether you have eaten before the test

Before undergoing tests, consult with your doctor to make sure there are no special instructions about taking certain medications, supplements, food, or drinks.

Deciphering My Lab Results

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This resource was originally published by Myeloma Crowd here.

We thought it might be helpful to have a document that describes your multiple myeloma test lab results and helps identify the important markers. This document contains a diagnosis summary checklist, a treatment summary form and each lab result described and color-coded for relevance.

 

Download It Here:

DECIPHERING MY MYELOMA LAB RESULTS

How is Multiple Myeloma Diagnosed? Symptoms, Prognosis, Causes, Treatment, and More

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This resource was originally published by Everyday Health by Pamela Kaufman here.

By Pamela Kaufman

Medically Reviewed by Kaylan Banda, MD

Last Updated: 10/11/2018

Multiple myeloma is a rare cancer that affects plasma cells.

Plasma cells, a type of white blood cell, are found primarily in bone marrow — the soft, inner tissue of bones.

Plasma cells are an important part of the immune system. They produce proteins called antibodies that help the body fight infection by attacking and killing germs.

When plasma cells grow out of control and begin to collect in bone marrow in different parts of the body, the result is multiple myeloma.

Multiple Myeloma Complications

Multiple myeloma can cause a number of complications, some of which may be very serious. These include:

  • Low blood counts As myeloma cells multiply in bone marrow, they crowd out red blood cells, white blood cells, and platelets. Low red blood cell levels (anemia) can result in fatigue and weakness. A drop in white blood cell count can decrease resistance to infection. Lack of platelets can lead to significant bruising and bleeding even from minor scrapes or cuts.
  • Bone and calcium issues Myeloma cells produce substances that speed the breakdown of old bone and slow the buildup of new bone. This leads to holes in bones and osteoporosis (low bone density), raising the risk of fractures. Even normal activities like coughing and walking may lead to a broken bone.
  • Myeloma cells not only reduce the number of infection-fighting white blood cells, they produce a single type of abnormal antibody that does not fight infection. This antibody is referred to by a number of names: monoclonal immunoglobulin, monoclonal protein, M protein, M-spike, and paraprotein.
  • Kidney damage The antibody produced by myeloma cells can build up in the blood and urine, leading to kidney problems. (1)

How Many People Get Multiple Myeloma?

According to the most recent statistics from the National Cancer Institute, almost 31,000 Americans will receive a multiple myeloma diagnosis in 2018.

That makes multiple myeloma relatively rare, accounting for 1.8 percent of all new cancer cases.

Around 0.8 percent of men and women in the U.S. will be diagnosed with multiple myeloma at some point during their lives.

The number of people diagnosed with multiple myeloma has climbed an average of 0.9 percent each year over the course of a decade, according to the most recent data.

But death rates from multiple myeloma have decreased 0.5 percent per year, reflecting improvements in treatment. (2)

More on Multiple Myeloma

What to Expect During Your First Doctor’s Visit for Multiple Myeloma

CAR T-Cell Therapy Enhances the Human Immune Response to Cancer

Drug Trio Shows Major Promise Against Myeloma

Gene Therapy May Thwart a Tough Blood Cancer

What Causes Multiple Myeloma and What Are the Risk Factors?

Scientists still don’t know what causes multiple myeloma or how to prevent it. For most people who develop the disease there are no clear reasons why.

Researchers have made progress understanding the DNA mutations (changes) that turn healthy plasma cells cancerous. This is vital work that many hope will point the way to improved treatment.

Researchers have identified a number of factors associated with increased multiple-myeloma risk.

These include:

  • Age Multiple myeloma is most often diagnosed in adults over the age of 65.
  • Gender Men are at a slightly higher risk than women.
  • Race African-Americans are almost twice as likely to get multiple myeloma as white Americans.
  • Family history Having a close relative with multiple myeloma increases a person’s odds of developing it. Is multiple myeloma hereditary? Sometimes. But most people with multiple myeloma have no family history of the disease.
  • Obesity People who are overweight or obese are at higher risk.
  • Other plasma cell diseases Men and women with a relatively benign condition called MGUS (monoclonal gammopathy of undetermined significance) should be vigilant: Every year 1 percent of these people go on to develop multiple myeloma. Patients with a type of blood cancer called solitary plasmacytoma also have a greater chance of developing multiple myeloma. (1)

The Signs and Symptoms of Multiple Myeloma

When symptoms of multiple myeloma do occur, they may include:

  • Bone pain, most often in the back or ribs (although pain can occur in any bone)
  • Bone fractures
  • Fatigue
  • Weakness
  • Frequent infections
  • Numbness, tingling, burning, or pain in the hands and feet
  • Excessive thirst and urination
  • Constipation
  • Abnormal bleeding
  • Headaches
  • Chest pain
  • Decreased alertness
  • Shortness of breath

Doctors sometimes use the acronym CRAB to describe myeloma symptoms:

  • C — calcium elevation (high levels of calcium in the blood)
  • R — renal insufficiency (poor kidney function)
  • A — anemia (low red blood cell count)
  • B — bone abnormalities (lesions) (3)

 

Learn More About the Symptoms of Multiple Myeloma

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How Multiple Myeloma Is Detected and Diagnosed

In order to make a multiple myeloma diagnosis, a medical team has a lot to consider: the patient’s symptoms, the results of a physical exam, and the findings of a battery of tests. Doctors look for telltale substances in blood and urine (calcium and certain kinds of proteins and antibodies), analyze samples of bone marrow and bone, and search for signs of disease in imaging tests such as X-rays, CT scans, and MRIs. Whatever else doctors find, a myeloma diagnosis will always involve a tumor made up of myeloma cells or at least a high concentration (at least 10 percent) of these cells in the bone marrow.

More on Diagnosing Cancer

Cancer: What Tests are Involved in the Diagnosis

Cancer: What Tests are Involved in the Diagnosis

In about a fifth of cases, doctors detect multiple myeloma during routine physical exams in patients without any outward signs of the disease. (5)

A diagnosis of asymptomatic multiple myeloma, also called smoldering multiple myeloma, does not typically lead to immediate treatment. Instead physicians often choose to take a watch-and-wait approach, performing regular blood and urine tests and offering medication or other therapies only when the cancer advances. (5)

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The Stages of Multiple Myeloma and What They Mean

Staging multiple myeloma is the method doctors use to assess how much cancer is in the body and where it is. Doctors stage the disease in order to come up with a treatment plan and a prognosis (a prediction of the course of the illness).

Staging may initially involve categorizing the cancer as symptomatic or asymptomatic, since patients in the first category generally don’t receive treatment and can remain stable for many years. Doctors may also categorize the cancer as stage 1, stage 2 or stage 3 using the Revised International Staging System (RISS). The RISS looks at a number of factors, such as blood levels of beta-2 microglobulin — a protein produced by myeloma cells. (6)

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Is Multiple Myeloma Curable?

Multiple myeloma has long been considered an incurable disease.

Throughout the 1990s, the average life expectancy for people with multiple myeloma was three years. Advances in medicine since then have increased median survival to more than five years, while some patients are pushing that number to upward of 10 years. (7)

A small subset of patients have been known to live in remission for decades. Are they “cured”? Doctors say it might be possible, although they remain highly cautious about making more definitive claims.

Meanwhile, new treatments are coming down the pike that hold promise to anyone facing a multiple myeloma diagnosis. These treatments aim to relieve symptoms, provide prolonged remissions, and increase the multiple myeloma survival rate.

Multiple Myeloma Treatments: Drug Therapy, Stem Cell Transplants, and More

Oncologists have many weapons in the fight against multiple myeloma. Treatment options include:

  • Chemotherapy and drug therapy, including targeted drugs that home in on specific genes or proteins in the cancer
  • Stem cell transplantation (in which cancerous cells are replaced with healthy cells) combined with high-dose chemotherapy
  • Radiation therapy
  • Supportive care to relieve symptoms
  • Clinical trials of new drugs, drug combinations, or stem cell transplant approaches

More on Multiple Myeloma Treatment

Gene Therapy May Thwart a Tough Blood Cancer

Gene Therapy May Thwart a Tough Blood Cancer
How to Fight the Fatigue of Chemotherapy Treatment

How to Fight the Fatigue of Chemotherapy Treatment

The rapid pace of research means that more and more treatments are in the pipeline. Among the most promising new treatments under investigation are those involving a type of immunotherapy called CAR T-cell therapy. CAR T-cell treatments involve genetically engineering a patient’s own T cells (a type of white blood cell) to allow them to recognize and attack cancer cells.

For every type of approach, outcomes for people with multiple myeloma depend on a number of factors, including overall health and ability to tolerate treatment.

Quality of care also makes a difference. The Leukemia and Lymphoma Society emphasizes the importance of seeking out a doctor with experience treating multiple myeloma or one who will work in concert with a specialist. These specialists are usually called hematologist oncologists. (8)

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Prognosis: What to Expect After Being Diagnosed

The median five-year survival rate (the percentage of people who live at least five years after diagnosis) for multiple myeloma is a little more than 50 percent. (9) But that doesn’t tell the whole story of what a person with this rare cancer of the plasma cells may experience. Life expectancy and quality of life depend on a number of factors, including a person’s age and overall health. The type of multiple myeloma also makes a difference. People with the early kind called smoldering multiple myeloma may remain symptom-free for many years before the disease begins to take a toll. Conversely, patients who have a form of myeloma with a high-risk genetic feature may have an especially poor prognosis.

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Life After Multiple Myeloma Treatment

With multiple myeloma there’s no simple way to define “survivorship.” While this type of cancer is considered incurable, some patients consider themselves to be survivors if they have no signs of disease after treatment. Others call themselves survivors because they’re committed to pursuing treatment over the long term and doing whatever they can to prevent recurrence.

Managing a mix of powerful emotions — fear, hope, guilt, joy — is part of life as a multiple myeloma survivor. An in-person support group, online community, and individual counseling can help patients understand complicated feelings.

For patients who regard their illness as motivation to make positive changes in their life, survivorship can involve eating well, not smoking, limiting alcohol and managing stress. It can also entail returning for regular medical checkups and tests as well as services such as physical therapy, nutritional planning, and pain management. (10)

Additional Resources for Multiple Myeloma

If you’ve been diagnosed with multiple myeloma, there are a number of excellent resources that can help you understand and cope with your condition. Click on the link below for more information on organizations, blogs, and websites that provide a wealth of information as well as medical, emotional, and financial support for people with multiple myeloma.

Learn More About Resources for Multiple Myeloma

 

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