“Where’s Your Kilimanjaro?”: Moving Mountains for Multiple Myeloma Sets the Bar High

Bob Dickey has one question: “Where’s your Kilimanjaro?”  The multiple myeloma survivor and member of the original Team Moving Mountains for Multiple Myeloma posed that question in the documentary memorializing the 2016 climb of Mount Kilimanjaro.   The film, which was screened at the Association of Community Cancer Center’s (ACCC) 2016 National Oncology Conference in St. Louis, features breathtaking pans of the mountain and its summit, as well as intimate insights from the climbers themselves: survivors, patients, doctors, caregivers and supporters.   The collaboration started this year between CURE Media Group, Takeda Oncology and the Multiple Myeloma Research Foundation (MMRF). Kilimanjaro was the first summit.

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Since then, different teams have made the trek through the Grand Canyon South Rim and up Machu Picchu. Over this past year, Moving Mountains for Multiple Myeloma has raised over $500,000 for the MMRF.   “You look at cancer and it’s this unbelievable mountain to climb,” said Marty Murphy, director of patient education at CURE and a climber on all three events with Moving Mountains. “We thought if we could find something by itself, unencumbered by anything else, like cancer, that’s the mountain to climb. We chose Kilimanjaro because it is the highest free-standing mountain in the world.”   Dickey called multiple myeloma an “orphan cancer.”  It’s estimated that there will be a total of about 30,000 new cases of multiple myeloma; that’s not quite 2 percent of all new cancer cases. Survival at five-years, though, is only at about 48 percent. However, the life expectancy over the past few years has tripled. Dickey referenced this, saying, “There’s no reason to throw in the towel. There’s more hope now than ever.”   On January 16, 2016, the Moving Mountains group began their ascent to conquer Kilimanjaro and raise money for multiple myeloma research. For Dickey, it was important that this venture not just be about raising awareness. “I’ve got cancer,” Dickey said, with a dry wit. “That’s all the awareness I need.” He wanted something that was more than just a feel-good project, something with some substance to it. The goal for fundraising was $113,000. In the end, the team raised close to $250,000.   That overshot of fundraising set the tone for the rest of the climb, according to Dickey. “Everything was more than it should have been,” he said.   The climb was harder, longer, colder and wetter than it should have been.

They climbed the 19,341 feet in six and a half days and then made the descent, at march, in just one and a half days. In the documentary, Dickey described the effects of the conditions and climate as “demoralizing.”   But it was the inner-mission of the climbers that kept them going. Some were climbing in celebration of their own survival, while others were doing it in support of a loved one.  Having an extra purpose kept the team going through all the weather, the exhaustion, every challenge.   “I wanted to turn around,” Murphy said. “But I’m next to this multiple myeloma patient and three others, and I couldn’t do it. I couldn’t turn around.”   Dickey agreed, “It was complete misery. But, there’s no choice. There’s no options. So you just gotta keep going, you just gotta put that foot in front of the other, and just keep going one at a time, one at a time, one at a time.”   That sentiment, those words, can easily be applied to the battle with multiple myeloma, or with any cancer.   “No person does this by themselves. You just don’t,” said Dickey of cancer. Climbing Kilimanjaro, too, was a team effort. “We pushed for each other really, really hard. We all wanted to be up at the top. And we wanted everybody else to be up there with us.”

Murphy described the climb as being about hope. “You can still live,” he said. “You still can take today and you can climb whatever that mountain is for you. It doesn’t have to be Kilimanjaro.”   This group making it to the top of Kilimanjaro, has inspired other patients with multiple myeloma to keep going – proved in the responses from patients that the group has received, as well as in more and more patients signing up for future events.   Whether your Kilimanjaro is climbing a mountain itself or just making it out of bed to get to the mailbox, Dickey promised that you’re your life does not end with a diagnosis of multiple myeloma.



Researchers take step toward understanding how multiple myeloma takes hold

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New research published in the Journal of Leukocyte Biology shows that crosstalk between multiple myeloma cells and healthy bone marrow cells is an important part of the disease process

Israeli scientists are moving closer to understanding how multiple myeloma takes hold in bone marrow by identifying what they believe are the mechanisms used by cancer cells to take over. In particular, they have found that the cancer cells communicate with healthy cells, changing the way proteins are made to make the bone marrow environment more favorable to cancer cells. They do this by manipulating an early phase in the process (protein translation initiation). The report appears in the October 2016 issue of the Journal of Leukocyte Biology.

“Our research should help identify therapeutic targets that may be used to minimize the collateral damage,” said Mahmoud Dabbah, M.Sc., a researcher involved in the work. “The identification of the translation initiation phase as a dialogue platform affords a potential new therapeutic target to be explored.”

Mesenchymal stem cells in the bone marrow are often altered in multiple myeloma favoring tumor progression, but the mechanisms are poorly understood. To shed light on this process, researchers used multiple myeloma cell lines and cultured the cells with normal donor mesenchymal stem cells. Changes in phenotype and translation initiation were found in mesenchymal stem cells following co-culture with the multiple myeloma cells suggesting an ability of tumor cells to modify the environment around themselves in the bone marrow.

“These studies delve into the crosstalk between tumors and the surrounding microenvironment for multiple myeloma and reveal a new type of influence by tumors on normal cells,” said E. John Wherry, Ph.D., Deputy Editor of the Journal of Leukocyte Biology. “The finding that protein translation in normal cells in subverted by tumor cells to create a better growth environment for cancer cells should reveal new opportunities for therapeutics aimed at stopping this process.”


The Journal of Leukocyte Biology publishes peer-reviewed manuscripts on original investigations focusing on the cellular and molecular biology of leukocytes and on the origins, the developmental biology, biochemistry and functions of granulocytes, lymphocytes, mononuclear phagocytes and other cells involved in host defense and inflammation. TheJournal of Leukocyte Biology is published by the Society for Leukocyte Biology.

Details: Mahmoud Dabbah, Oshrat Attar-Schneider, Victoria Zismanov, Shelly Tartakover Matalon, Michael Lishner, and Liat Drucker. Multiple myeloma cells promote migration of bone marrow mesenchymal stem cells by altering their translation initiation. J. Leukoc. Biol. October 2016 100:761-770; doi:10.1189/jlb.3A1115-510RR;



Your risk for the blood cancer multiple myeloma increases with age

Multiple myeloma is a type of blood cancer that begins in the plasma cells. These are a type of white blood cell and part of our immune system, which helps protect our bodies from germs and other harmful substances.

When multiple myeloma develops, the plasma cells become cancerous, multiply quickly and form tumors in the bone marrow and the solid parts of bones.

We don’t yet know the exact causes of multiple myeloma, but it’s more common in older people and African Americans. It can also run in families. About 30,000 new cases are expected this year.


Early in the disease’s development, it may not show any symptoms. That makes it difficult to diagnose. Common symptoms may include:

  • Bone pain, often in the back or ribs
  • Broken bones
  • Weakness or fatigue
  • Weight loss
  • Frequent infections and fevers
  • Feeling very thirsty
  • Frequent urination


Doctors diagnose multiple myeloma using lab tests, imaging tests and a bone marrow biopsy.

Treatment depends on how advanced the disease is and whether there are symptoms. If there are no symptoms, treatment may be delayed. If there are symptoms, treatment may include chemotherapy, stem cell transplantation, radiation or targeted therapy. Targeted therapy uses substances that attack cancer cells without harming normal cells.



Gratitude is the new black;Multiple Myeloma

In this blog, I usually try to focus on the positive elements of my illness, and certainly of life.  It probably goes without saying that having cancer – or any serious illness – can really force you stop and take stock of your life.  There is so much in the world that can be negative – it’s easy for us to focus on the people or times in life that have disappointed us.

Like many of us, especially moms, we all have so many things – too many things – going on all day, every day.  Without even thinking about it, we can get caught up in the day-to-day craziness. If I were to outline what a typical Tuesday looks like around our house – trust me, you would need a nap, a cocktail or both!

Much of what my  husband and I talk about these days is how we are going to get our three children to three different places.  And like many of us, especially moms, I usually moan and groan about how am I EVER going to be in so many places at once.

However, what hit me this weekend, at one of our three soccer games, was how GRATEFUL I was to be watching my children play.  Two Octobers ago, soccer was just soccer. One of too many activities we had to cart the kids back and forth from.  This weekend, as I watched my son score a goal, I cried. Yes, I ACTUALLY cried (thank goodness for sunglasses).  It was a nice goal but it wasn’t the technique involved or even that it was a winning goal (because they STILL don’t keep score in these games!).  It was watching his growth and seeing how far he’s come – and feeling grateful that I am here to see it.


For the last three months, I have been home, taking care of myself and putting my well-being first. This time has been invaluable to me, my health and my family.  As difficult as it was to agree with my doctor and nurse that I needed to do this, it was without question the right thing to do. Putting ourselves first isn’t always easy or natural.  If you’re like me, guilt kicks in pretty quickly.  On top of that, who has the time?   we all spend our days rushing from place to place, without stopping to reflect on how we actually want to fill our days.  What I have been able to learn more clearly since my diagnosis is HOW I want to spend my time – and WHO I want to spend my time with. Before this illness, saying yes to anything and everything I was asked to do (and even some stuff I wasn’t asked to do!) was my “chronic illness”.  This type of clarity is something I am not sure I had before I got sick.

For this, I am grateful.

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In a few short weeks, I will be the Honored Hero for the Leukemia & Lymphoma Society‘s  (LLS) Light the Night Walk in Princeton, New Jersey.  I feel so lucky to have been recognized in this way – and to be able to share my story with others.  LLS is an amazing organization, whose mission is to “cure leukemia, lymphoma, Hodgkin’s disease and myeloma, and improve the quality of life of patients and their families.  LLS exists to find cures and ensure access to treatments for blood cancer patients. We are the voice for all blood cancer patients and we work to ensure access to treatments for all blood cancer patients…”

When I first became involved with LLS a few months ago I made a commitment to raise awareness and funds for the walk and to advance the mission.  Which means I have to ask for money from our friends and families. This is NOT easy for me to do but I do it, reminding myself the money isn’t for me, well at least not literally (ultimately the funds will be used benefit all blood cancers, which will be good for me!).  I have been laser-focused on being creative about how to raise this money. I have put aside my own insecurities and discomfort at asking for help (and especially for money) and have been astonished at the outpouring of support we have received.   Friends and family members are donating their time, money and/or resources to support our team’s fundraising efforts. Every time an email comes in, alerting me to a donation, I am humbled beyond measure.  People from all stages of our lives have been so incredibly generous to us, and have been since the day I was diagnosed.

For this, I am grateful.

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A dear friend has told me – since we became “cancer buddies”  – that we each fight our own fight and we must swim in our own lane.  What happens to me in my battle against this disease won’t be the same as what happens to someone else, even if they are the same age as me or were diagnosed the same time.  However, each day I am reminded how lucky I am.  I belong to several Facebook groups supporting Myeloma patients and their families.  I joined to be part of a community of others who are facing similar things as me.  It can be a forum to share experiences, ask questions and learn. But sometimes it is also place where difficult news is shared – someone has come out of remission, is entering hospice or has lost their battle.    Recently a “myeloma friend” (a connection initially made purely because we both got diagnosed around the same time) found out that she is no longer in remission.  We have much in common.  She too had a stem cell transplant (in fact, another transplant to support the first). She too has had similar treatments. She too lost her hair (actually, she’s lost it twice). Luckily, she too has an incredibly positive attitude, even about this most recent setback. I am confident she will be okay and will be soon be sharing the news that she has kicked Myeloma’s *ss again and is back in remission.  However her situation, and that of many others like her, reminds me just how fickle this particular type of cancer can be and how lucky I am to be solidly in remission.

For this, I am grateful.

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Those dark nights, two years ago after coming home from the hospital, I was worried ALL. THE. TIME.  I worried about leaving my husband far too early – and as a single parent, to care for our three children alone.  I worried about leaving our children with no mother at very young ages – would THAT be their story?   I worried about all three of them, but I would often lay in bed with our youngest and wonder – if I left them this soon – would she remember me?

After watching my son score that goal, I walked across the fields (because naturally two of our three children play at the same time!) and watched our 6-year-old play. And you know what?   She’s actually not that bad!  Nearly two years ago, when I was first diagnosed, she was just a baby.  I wasn’t thinking about her soccer prowess.  I was thinking – far too often – about whether I would be around to see her – all of them – grow up?

Well, this week that same little girl turned six (SIX??).  There were questions about whether I would see her start kindergarten but two weeks ago she climbed those bus steps and I was there to watch her do it. I am not sure I can promise to completely stop grumbling about the many things I have to do, the carpooling, the homework, the bedtime routines (I believe we moms complain about this but secretly love most, if not all, of it).  But I can promise this – that I will stop, as often as possible, and remind myself how lucky I am to be here and alive to do them all.

For this, I am so grateful.


Every day brings us a new milestone – it may be starting kindergarten, or a lost tooth or simply looking at your child or partner in a new way, discovering something about them you never realized before. Perhaps your child won the spelling bee or scored that winning goal in hockey. Maybe you lost those last 10 pounds. Or maybe you said….to hell with those last 10 pounds and decided to treat yourself to that ice cream cone.  Maybe you connected with a friend you haven’t talked to in a while or finally decided to give yourself permission to block that annoying “friend” on Facebook until after the presidential election.  No matter what it is, you have the ability to make that choice – and are here and alive to do it.

And for this, we should ALL should be grateful. 

Take a moment and think about it.  What are YOU grateful for?



Would you have Feeling Cold when you have Multiple Myeloma?


Feeling cold is found among people with Multiple myeloma, especially for people who are female, 60+ old, take medication Revlimid and have Pain. We study 97 people who have Feeling cold and Multiple myeloma from FDA and social media. Find out below who they are, other conditions they have and drugs they take.


Personalized Image result for multiple myelomahealth information

On eHealthMe you can find out what patients like me (same gender, age) reported their drugs and conditions on FDA and social media since 1977. Our tools are free and anonymous. 86 million people have used us. 300+ peer-reviewed medical journals have referenced our original studies

Multiple Myeloma

Multiple myeloma (cancer of the plasma cells) can be treated by Revlimid, Velcade, Dexamethasone, Zometa, Thalomid

Feeling Cold

Feeling cold has been reported by people with erection problems, neck pain, abdominal pain, drowsiness, pain in jaw

On Sep, 20, 2016

97 people who have Multiple Myeloma and Feeling Cold are studied.

Number of reports submitted per year

Would you have Feeling cold when you have Multiple myeloma?

Gender of people who have Multiple Myeloma and experience Feeling Cold *:

  • female: 54.35 %
  • male: 45.65 %

Age of people who have Multiple Myeloma and experience Feeling Cold *:

  • 0-1: 0.0 %
  • 2-9: 0.0 %
  • 10-19: 0.0 %
  • 20-29: 0.0 %
  • 30-39: 1.49 %
  • 40-49: 2.99 %
  • 50-59: 11.94 %
  • 60+: 83.58 %

Severity if Multiple Myeloma and experience Feeling Cold *:

  • least: 0.0 %
  • moderate: 100 %
  • severe: 0.0 %
  • most severe: 0.0 %

Top co-existing conditions for these people *:

  • Pain (6 people, 6.19%)
  • Hypertension (3 people, 3.09%)
  • Back Pain (3 people, 3.09%)
  • Prophylaxis (2 people, 2.06%)
  • Poems Syndrome (2 people, 2.06%)

Most common drugs for these people *:

  • Revlimid (52 people, 53.61%)
  • Velcade (21 people, 21.65%)
  • Dexamethasone. (17 people, 17.53%)
  • Thalomid (13 people, 13.40%)
  • Dexamethasone (10 people, 10.31%)

Top symptoms for these people *:

  • Fatigue (24 people, 24.74%)
  • Diarrhoea (17 people, 17.53%)
  • Asthenia (10 people, 10.31%)
  • Pain (9 people, 9.28%)
  • Hypoaesthesia (9 people, 9.28

* Approximation only. Some reports may have incomplete information.

How to use the study: print a copy of the study and bring it to your health teams to ensure drug risks and benefits are fully discussed and understood.

Do you have Feeling cold and Multiple myeloma?

  • Check symptoms – is your feeling cold caused by a drug or a condition?
  • Ask a question – ask patients like you a question
  • Write a review – share your experience with people who need it the most, securely




Multiple myeloma is a treatable but incurable blood cancer that typically occurs in the bone marrow. It is a relatively uncommon cancer, affecting approximately 30,000 new people each year.1 Difficult to diagnose until it is in the advanced stages, it is mainly treated with chemotherapy and stem cell therapies. But the survival rate is increasing, especially as advances in treatment are being discovered. Here are the ten things you need to know about the disease.


Nothing can replace the care of your clinician or doctor. Please do not make changes to your treatment or schedules without first consulting your healthcare providers. This article is not intended to diagnose or treat illness.


Multiple myeloma is a type of cancer that typically occurs within a bone due to the presence of malignant plasma cells. Under normal circumstances, plasma cells develop from B cells—a type of cell that the immune system uses to fight disease or infection. When B cells react to an infection or disease, they change into plasma cells, which are responsible for creating antibodies to help fight germs. These plasma cells are found mainly in bone marrow.

Sometimes, after plasma cells develop, they can begin to grow out of control and create a tumor called a plasmacytoma. These tumors generally develop within a bone but can occasionally be found in other body tissues. When a person develops more than one of these tumors, they have multiple myeloma.


Unlike many other cancers, there are very few known risk factors associated with getting multiple myeloma. These factors are listed below.

  • Age: The majority of diagnoses are in people who are more than 45 years old (96 percent), and more than 63 percent of diagnoses are in people older than 65. Less than one percent of cases are in people younger than 35.2
  • Race: For reasons unknown, it is more than twice as common in African-Americans than in white Americans.
  • Gender: Men are at a slightly higher risk than women.
  • Family history: A person with a parent or sibling who has the disease is four times more likely to get the disease, too.
  • Obesity: Being overweight or obese increases the risk.
  • Having other plasma cell diseases: A person with solitary plasmacytoma (a single tumor), or someone diagnosed with monoclonal gammopathy of undetermined significance, which is a plasma cell disorder that does not normally cause problems, is more likely to later develop multiple myeloma.
  • Radiation: People exposed to are at a higher risk.
  • Workers exposed to ionizing radiation have been shown to have an increased risk of the disease as well, according to a study conducted at US Department of Energy facilities.
  • Workplace exposure: Some studies have shown that workers in occupations such as agriculture, leather, petroleum and cosmetology, and workers exposed to chemicals such as asbestos, benzene, and pesticides are at an increased risk.

Researchers do not have a clear understanding of what causes multiple myeloma, though they have made progress into better understanding how specific DNA changes can cause plasma cells to mutate. Studies show that abnormalities in genes called oncogenes, which promote cell division, develop early in the growth of plasma cell tumors. Studies also show that myeloma cells have abnormalities in their chromosomes; specifically, research has revealed that pieces of chromosome 13 are missing.

Research also shows that in approximately half of people diagnosed with multiple myeloma, a translocation has occurred. This is when “a part of one chromosome has switched with a part of another chromosome in the myeloma cell.”4 Scientists have also discovered that people with plasma cell tumors have abnormalities in other bone marrow cells, which might cause too much plasma cell growth.


The early stages of multiple myeloma may not have any symptoms, and even when symptoms are present, they may be similar to those that occur with other conditions. Below are some of the common symptoms of the disease:

  • Fatigue
  • Bone pain and/or bone fractures
  • Nausea/vomiting
  • Increased thirst
  • Increased/decreased urination
  • Increased risk of infections
  • Confusion
  • Loss of appetite/weight loss
  • Restlessness that is later followed by significant fatigue and weakness
  • Problems with kidney function


targeted treatment multiple myeloma

There are many drugs available to treat multiple myeloma, with chemotherapy and autologous stem cell transplants (when stem cells are collected from the patient) the most common, but several of the most recent and exciting treatments to become available are two medications called daratumumab and ixazomib, and a form of treatment known as immunotherapy.

Darzalex (Daratumumab): In November 2015, the FDA granted “accelerated approval” for daratumumab injections in the treatment of multiple myeloma. The drug may only be used by individuals who have already undergone at least three other types of therapy.

Darzalex is part of a category of drugs called monoclonal antibodies. It works by binding to a protein called CD38, which is typically found on the surface of myeloma cells. Once it is attached to the cell, the drug attacks the cell while simultaneously signaling to the immune system to fight against the cells.

Almost one-third of clinical trial participants (with a median of five previous therapies) responded positively to the drug. Daratumumab may be purchased from

Ixazomib: Recently approved by the FDA, this completely oral treatment is used in combination with standard myeloma drugs to treat people who have already undergone at least one previous therapy. Clinical study results showed that the drug taken in combination with lenalidomide and dexamethasone increased “progression-free survival (PFS) in patients with relapsed/refractory multiple myeloma.”5

Immunotherapy: Immunotherapy is when a person’s immune system is used to treat an infection or disease. In a recent study, scientists discovered that 70 percent of people with multiple myeloma who were treated with immunotherapy had a “significant clinical response” to the disease.6 In the study, 14 of the 20 participants with an advanced form of multiple myeloma had a “near-complete or complete response three months after treatment; median progression-free survival was 91.1 months, while the overall survival lasted 32.1 months.”7 Further, no significant side effects were reported. This is an important advance, given that current treatments such as chemotherapy and autologous stem cell transplants have low long-term responses and an average survival rate between three and five years.8


NBC News anchor Tom Brokaw was diagnosed with multiple myeloma in August 2013 following a bout of severe back pain. Though he originally wanted to keep the diagnosis private, he eventually announced his fight against the disease. His memoir, A Lucky Life Interrupted, was published last year and details his journey following his diagnosis. In it, Brokaw discusses the challenges he faced from the disease: weight loss, the inability to sometimes walk without help, the side effects from his medications, and the moment when he learned that the disease was affecting 60 percent of his blood. After 16 months of treatment, his cancer went into remission.


Several different diagnostic tests must be used to confirm a multiple myeloma diagnosis because it is challenging to diagnose based on a single laboratory result. A physical evaluation will be done alongside a review of the individual’s history, symptoms, blood and urine tests, and a bone marrow biopsy. Other tests might include an MRI, CT scan, PET scan and X-rays.

In order to definitively diagnose multiple myeloma, a person must meet at least one major and one minor or three minor criteria. Those criteria are:

Major criteria:

  • Plasmacytoma (based on a biopsy)
  • The existence of 30 percent plasma cells in a bone marrow sample
  • Increased levels of M protein in either blood or urine

Minor criteria:

  • 10 percent to 30 percent plasma cells in a bone marrow sample
  • Osteolytic lesions
  • A minor elevation in M protein levels in blood or urine
  • Low levels of antibodies (that are not produced by cancer cells) in the blood.


The criteria as discussed above helps doctors determine not only whether a person has the disease, but also under which classification the disease falls. Those classifications are:

  • Monoclonal gammopathy of undetermined significance (MGUS)
  • Asymptomatic myeloma, which is then divided into two subcategories:
  • Smoldering myeloma
  • Indolent myeloma
  • Symptomatic myeloma

Once the classification is known, a doctor will then determine which stage of the disease exists, which will help establish the prognosis and treatment options.

The most common way to diagnose the stage of the disease is through the International Staging System (ISS), which is based on two different blood test results: the beta 2-microglobulin (β2-M) and the albumin. There are three stages of classification under the ISS:

  • Stage I: β2-M less than 3.5 mg/L and albumin greater than or equal to 3.5 gm/dL
  • Stage II: Either β2-M greater than 3.5 mg/L but not greater than 5.5 mg/dL and/or albumin less than 3.5 g/dL
  • Stage III: β2-M greater than 5.5 mg/L

The Durie-Salmon Staging System is an older system of diagnosis. This uses four measurements to determine which stage of the disease exists: 1) the amount of hemoglobin in the blood; 2) the amount of calcium in the blood; 3) the production rate of M protein; and 4) the number of bone lesions. The disease’s stage is then further subdivided based on kidney function.

The three stages of the disease as determined by the Durie-Salmon Staging System are: Stages I, II and III. Each of these stages is then subdivided into either Stage A or Stage B based on whether kidney function is affected. (Stage B means there is significant kidney damage.)

  • Stage I: Though a person with Stage I often shows no symptoms of the disease because there are fewer cancer cells present in the body, other signs will be present, such as: amount of red blood cells within or a little below the normal range, a normal amount of calcium in the blood, low levels of M protein in the urine or blood.
  • Stage II: More cancer cells are present in the body than in Stage I. An individual who does not fit into either Stage I or Stage III is said to have Stage II.
  • Stage III: There are many cancer cells present. Other characteristics of this stage include; hypercalcemia, high levels of M protein, anemia, and significant bone damage.

Note: In any stage, if kidney function is affected, the prognosis will be worse.


multiple myeloma treatment

The most common multiple myeloma treatment has typically been chemotherapy followed by stem cell transplants. Because the disease is not curable, this method of treatment aimed to create longer and longer stretches of time during which it did not progress. Now, however, significant advances in research have dramatically changed not only the prognosis but the treatment that is offered. In fact, treatments have advanced so much that there is an increasing discussion among the scientific community as to whether a stem cell transplant should be done after diagnosis or if it is better to wait until a relapse.

Scientists are currently experimenting with different combinations of medications to increase the survival rate. For example, efforts are being made to combine certain drugs that not only have diminished side effects but that also “lengthen stretches of progression-free survival (PFS).9Other drugs are being studied to see how they can work with the body’s immune system to fight the disease.

“It’s a massive convergence of our understanding of biology, the technology becoming available to understand myeloma cells and how they respond, the genetic subtypes of myeloma, the ability to engage both the patient community and researcher, to transfer data and information,” says Walter Capone, president and CEO of the Multiple Myeloma Research Foundation, in an article with Cure.10


The International Myeloma Foundation—while not an official sponsor of the more than 150 multiple myeloma support groups around the world—conducts yearly conferences for support group leaders. Information on support groups according to an individual’s geographical location can be found on the IMF website.

multiple myeloma facts family


According to Cancer Research UK (which used data from 2010-2011), 78 percent of men diagnosed with the disease survive for at least one year and 50 percent survive for five years or longer. For women, that number is 75 percent for one year and 44 percent for at least five years or longer.11

In the United States, researchers reported that a “newly diagnosed myeloma patient 15 years ago, for example, was about one-third as likely as someone without myeloma to live another five years.”12 Those same researchers found that “By the end of the 2000s, in contrast, that same myeloma patient would be 45 percent as likely as someone without myeloma to live another five years.”13 According to the American Cancer Society, the median survival rate for Stage I is 62 months; Stage II: 44 months; and Stage III, 29 months.14

With advances in treatment, as well as ongoing clinical studies, those prognoses continue to increase. In fact, the prognosis today of someone diagnosed with the disease is nearly triple what it once was.



What Kind Of Cancer Is Multiple Myeloma? Here’s Everything You Need To Know

Multiple myeloma is a type of cancer that is caused by plasma cells that are malignant. A plasma cell is a type of white blood cell found in the bone marrow. Normal plasma cells are vital to a healthy immune system.

In 2015, the battle against multiple myeloma received a new ally. The U.S. Food & Drug Administration (FDA) approved Johnson & Johnson’s multiple myeloma drug Darzalex. The drug is designed for multiple myeloma patients with limited options due to previous failed treatments.

What Are The Common Symptoms For Multiple Myeloma?

According to the U.S. National Library of Medicine (NLM), common symptoms for multiple myeloma can include broken bones, bone pain (in the ribs or in the back), weight loss, fatigue and frequent urination.

Individuals with multiple myeloma can also feel very thirsty frequently and suffer from recurrent fevers and infections. Other symptoms include constipation, nausea, confusion and loss of appetite.

If one suffers from any of these persistent symptoms, it is best to make an appointment with a doctor.

How Is Multiple Myeloma Diagnosed?

Common diagnosis methods include imaging and lab tests as well as a biopsy of the bone marrow.

What Are The Complications Linked To Multiple Myeloma?

Patients with multiple myeloma have low blood counts because the plasma cells overgrowth in the bone marrow can overcrowd the healthy blood-forming cells. This condition can cause anemia — red blood cells shortage. Anemia patients become weak and pale and they suffer from fatigue.

People with multiple myeloma can also develop thrombocytopenia, a condition wherein the blood platelets levels are low. Thrombocytopenia can lead to increased bruising and bleeding.

 Another multiple myeloma-related condition is leukopenia wherein there is a shortage of healthy white blood cells. It can affect the patient’s ability to fight infections.

Multiple myeloma affects the bones, which can lead to fractures, bone thinning and pain. Eroding bones can increase the calcium levels in the blood, which affects the kidney’s ability to filter waste and can lead to kidney problems.

What Are the Treatments For Multiple Myeloma?

Treatment of multiple myeloma depends on the how far the condition has progressed. According to NLM, patients who have no symptoms may not require immediate treatment. However, for patients who suffer from various symptoms, common treatments include targeted therapy, radiation, chemotherapy and stem cell transplantation.

Johnson & Johnson’s multiple myeloma drug Darzalex, which is chemically known as daratumumab, attacks only the malignant cells while keeping healthy cells undisturbed.



How and why does multiple myeloma damage bones?

According to medical journalist Laura Beil, “Malignant plasma cells affect the remodeling of bone, causing overproduction of the natural substances that dissolve bone.  When plasmacytomas (the scientific term for myeloma related tumors or lesions) form inside bones, the affected bones can develop soft spots or holes.  Although these lesions can affect any bone, pain appears to be most common in the back, ribs and hips.”

A simple, lay woman’s interpretation of myeloma bone involvement.  I like it!

She goes on to mention something we all already knew.  That “sometimes bones can become so weak they easily fracture.”

OUCH!  Been there, done that!  A few more thoughts…

Although large bones with the most marrow tend to be damaged first, myeloma lesions can also form in the skull and below the elbow or knee.  So make sure X-ray bone surveys cover the head, forearms, hands, shins and feet.

Also, did you know plasmacytomas can form in muscle as well as bone?

In this case, an MRI or PET scan is the best way to confirm the presence of soft tissue plasmacytomas.

Personally, I don’t trust X-rays for tracking multiple myeloma damage anyway.  While my spinal X-rays only showed a hairline crack in my T-12 vertebra before I was initially diagnosed, a subsequent MRI revealed a number of bones that literally looked like Swiss cheese.

So while bone surveys are a standard way to track extensive and existing bone damage that has calcified over time, they aren’t great at detecting new or soft tissue damage.

The moral here:  Any multiple myeloma patient who detects  any new, persistent bone pain should talk with their specialist about having the area scanned, not just X-rayed.



Prevalence of Multiple Myeloma Patients is increasing

Prevalence of Multiple Myeloma Patients is increasing

This type of cancer is incurable, but new therapies show very good results.

DENMARK – Multiple myeloma is a type of cancer of incurable blood but thanks to the “armamentarium” which has been developed especially in the last decade and has yielded very good results, has allowed patients who suffer can look to the future with more hope.

Dr. Maria Victoria Mateos, University Hospital of Salamanca, said in a meeting with the Spanish media while attending the Congress of the European Hematology Association (EHA) held in Copenhagen from June 9 and ends today.

Myeloma is the second malignant hematological disease and is a cancer of the bone marrow caused by poor DNA degeneration of the plasma cells. There were four new cases approximately recorded each year for every 100 thousand inhabitants, most people were of advanced age.

While its incidence remains constant, explained Mateos, the prevalence is increasing, mainly due to the survival of patients who have been treated with new therapies.

“The message is that the therapeutic arsenal for patients with myeloma is increasing in a very significant way, which will make, probably, at best, be able to cure them,” said the expert, who said that “the star” in this European conference was the drug daratumumab, a monoclonal antibody.

A randomized phase III clinical trial presented at the plenary session of the Congress held nearly 600 myeloma patients who had relapsed from the disease after at least one prior therapy. They found out that the daratumumab administered in addition to the standard treatment consisting of two other drugs dexamethasone and lenalidomide, significantly prolongs survival.

Specifically, the doctor explained, this therapy reduced the probability that the disease progressed or the patient died by 63% compared with study participants who received only the standard treatment.

In addition, the trial which involved several hospitals, found that up to nearly 43% of patients did not show signs of the disease anymore, which does not mean, cleared Mateos doctor, they are definitively healed.  But rather myeloma has disappeared as far as they could see. It is the best response they can achieve but today they are not able to say it has been cured.

In fact, those patients in whom the disease has disappeared, once a month should continue to receive therapy.

Mateos also referred to another study presented at the conference and which had previously been exposed in the last congress of the American Society of Clinical Oncology held in Chicago.

The trial, also in Phase III, as well demonstrated the effectiveness of the drug in patients who relapsed, by combining daratumumab with standard treatment of bortezomib and dexamethasone.

These drugs are incorporated in principle to treat patients in advanced stages. Maria hopes that the combination triple therapy is approved by the European Medicines Agency “in months” since the daratumumab already has approval for single use.



It Takes Two (or More) to Tango with Multiple Myeloma

It Takes Two (or More) to Tango with Myeloma

Tim Gavallas, a police officer in Watertown, Connecticut, used to lead a pretty active lifestyle; he enjoyed lifting weights and running obstacle races, often finishing in the top of the pack. But several years ago, he slowly realized something wasn’t quite right. He started losing weight, and his back began to hurt.

Those symptoms led to a diagnosis of multiple myeloma in 2013, when Gavallas was just 38 years old. He was immediately prescribed a combination of therapies shown to work together to treat myeloma. As a result, things began improving, and within six months he was back on duty full time. He is currently on a different combination but still doing well.

“I’m two and a half years into it now, and I feel pretty good,” Gavallas said. “I can’t lift heavy weights like I used to, but I’m still active and can play with my two young boys.”

Tim Gavallas was prescribed a combination therapy for multiple myeloma following his diagnosis in 2013.

Gavallas is just one of the many patients who are benefiting from a shift in how physicians treat multiple myeloma, as they are increasingly using combinations meant to attack multiple myeloma on multiple fronts.

As the interest in a variety of combination therapies continues to grow, data presented at this year’s Annual Meeting of the American Society of Hematology (ASH) should provide better insight into which groups of medicines hold the most promise.

We’re seeing not only more studies on combination therapies, but also updated follow-up data on the studies we saw last year at ASH.

“We’re seeing not only more studies on combination therapies, but also updated follow-up data on the studies we saw last year at ASH,” Mohamad Hussein, vice president, Global Medical Affairs, Multiple Myeloma at Celgene, said. “Doctors now have more information to help them make the best treatment decisions for their patients.”

Although the potential was initially recognized about a decade ago, only now are researchers seeing the data from studies of combination therapies.

That really speaks to how dramatically new therapies have improved survival over the last decade; with 47 percent of patients now living longer than 5 years after diagnosis, it takes studies at least that long to show that combinations can further improve survival.

The success of combinations doesn’t seem surprising when we consider the complexity of myeloma. Evidence is mounting that multiple myeloma is actually the result of several factors acting together and spurred on by a variety of genetic mutations.

So while one treatment may kill a majority of myeloma cells, other cancerous cells may not be affected at all; those remaining myeloma cells may be the basis of relapse. But combining therapies that target different cell subpopulations could decimate myeloma cell populations that one therapy could never do on its own. Now researchers just need to identify the best combinations.

“Immunomodulators are attractive partners in myeloma combination treatments,” Hussein said. “They enhance the activities of other therapies and their control of the multiple myeloma pathophysiology.”

Although combination therapies are helping transform myeloma into a long-term, manageable illness, we still need to better understand which patients would respond best to which specific combinations.

And since 15 to 20 percent of myeloma patients do not respond well to any of the current treatments—even combinations—we need more options.

New therapeutic classes will lead to new, possibly more effective combinations, which can provide hope for myeloma patients. Gavallas remembers how powerful a bit of hope can be. “When I was first diagnosed, I was scared,” he said. “But then I met someone in my support group who had been living with myeloma for over 15 years because of these new therapies and combinations. At that moment, I felt a huge sense of relief.”