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Myeloma Patient Cafe® – Genetic Testing from A Myeloma Patient Perspective

Myeloma Patient Cafe® – Genetic Testing from A Myeloma Patient Perspective from Patient Empowerment Network on Vimeo.

PEN Board Member, Jack Aiello, leads a myeloma patient panel discussion on genetic testing.

See More From The Myeloma Patient Cafe®



Thanks for joining us for this Patient Empowerment Network Myeloma Patient Café. I’m Jack Aiello. I’ve been living with myeloma since 1995, and the world has changed a lot since then, including the introduction of genetic testing. That’s gonna be our topic of discussion today. I personally have never had genetic testing because it wasn’t done back then, so I’m looking forward to learning from you all, our patient panel, who have been diagnosed more recently than I have.

We’ll talk exactly what genetic testing is about, why you might get genetic testing done, and more, but we won’t really go into the science of it. Instead, this is gonna be a conversation among patients and caregivers and serve off as a jumping point to pique your interest in genetic testing, and have a discussion with your doctor about it if you desire.

Before we dive in, I wanna meet our panel, and I’m gonna ask each of you to introduce yourself. Tell me when you were diagnosed and the treatments you’ve gone through, and I will start with Doug.


I’m Doug Kenaley. I was diagnosed in 2015, and my initial induction treatment is a little different than most. It was really only – it turned out to be Velcade and dex, and it got me down to the level where I could have a stem cell transplant, so then, I had an auto stem cell transplant. And then, about five months after that, I joined the elotuzumab maintenance trial, so I’ve been on elotuzumab and Revlimid since that point.


Okay. Peggy, tell us about yourself.

Peggy Lindley:

My name is Peggy Lindley, and I was diagnosed with this lovely disease on Valentine’s Day of 2019, and it was just from my regular doctor. I go every year for my bloodwork, and he found something with me, and he found it only – he was aware of it because his mother was diagnosed a couple of years before that, so he’s the one that got me there because I would have never thought that. He asked me, “Do you have any bone pain or anything?” I said, “Well, just my back,” and that was it.

Anyways, he told me what I had. Then, I had a bone marrow biopsy, and that showed it. So, I went through five rounds of the Revlimid, dex, and Velcade, and then, in July of last year, I had my stem cell transplant, and I got my stem cells back on July 12th, and then, in November of last year, I started with the maintenance therapy, which is elotuzumab with Revlimid, so I do that every 28 days now. It was a little bit sooner, and you start one week – it was a progression, so now, I go once every 28 days.


Got it. Nancy, tell us about yourself.


My name is Nancy Raimondi, and I was initially diagnosed in 2006 with smoldering multiple myeloma, and I was followed over the next nine years – I just continued to smolder until 2015. I developed a plasma cytoma, and that got biopsied, and it was 60 percent myeloma cells, so I needed treatment, so I started treatment July of 2015, I was diagnosed as high risk, so I was put in a clinical trial that included carfilzomib.

I had five rounds of chemo, did tandem stem cell transplants, and finished everything about seven and a half months later. Went in maintenance therapy the first year, was when Ninlaro was just released, so I was on Ninlaro, Revlimid, and dex for a year, and then, that got changed to daratumumab, Revlimid, and dex, and I was on that for another year. And then, in December 2017, I was MRD-negative, and I’ve not been on any treatment for myeloma since then.


We’ll talk more about MRD-negative because that’s important to this discussion. George, how about yourself?


My name is George Burrell. I was diagnosed in April of 2011. Ironically, the day that I was diagnosed was Easter Sunday and my wife and I’s anniversary. The – doctor told us we had multiple myeloma, and that we needed to get the numbers down so that he could put me in a stem cell transplant. I’ve had two of those, and I’m currently on a three-stage regimen of Cytoxan, dexamethasone, and Kyprolis, and it seems to be working quite well. My numbers are down, and have been holding pretty steady for about four or five months now, so we’re really happy.


I thought it was interesting, Peggy, how George introduced the fact that “we” were diagnosed with myeloma, so maybe you can talk about what that experience was like for you.

Peg Burrell:

Well, definitely, it is a journey of “we,” and it was very frightening. I’d only heard the word “multiple myeloma” one time, with a colleague from work whose father was much older, who’d had multiple myeloma. And, George’s symptom was low iron anemia, and he’d been sent to an oncologist for iron infusions, but he never presented any other symptoms.

The doctor would say, “How are you?”, and he would say, “I’m fine,” and a year later, he was rushed to the emergency room with bleeding ulcers, and that’s when the oncologist just happened to be in the ER, and they thought George was having a heart attack, his blood count was so low, so they did a CT scan, and his oncologist came in and said, “This is multiple myeloma, I’m pretty sure.”

So, it was devastating, very frightening, but once we had a game plan – and, the one thing that George told me – he says, “Stop treating me like I’m dead,” and I was running over curbs taking him to appointments, and I was just a wreck. He was like, “You’re gonna kill me.” But, it is quite a journey, and I’m happy that I’ve been able to be there with him.


Good. Since this Patient Café is to focus on genetic testing, let’s first get agreement what genetic testing is, which is basically looking at potential mutations in your myeloma cells. So, with that in mind, other than me, who’s never had genetic testing, has every patient here had genetic testing?



Peggy Lindley:

I have.


Probably, right? Because you begin maybe with a FISH and cytogenetics testing. Doug, when you had that, did that yield anything interesting for you?


Mine was a bit interesting because I went to a local oncologist, even though I was here in Houston, who’s close to me, and he had done a stint at MD Anderson. And so, he presented it to me when I was diagnosed – “You should have genetic testing right away.” So, I looked into it and thought it was a good idea, even though four years ago, even, there wasn’t a whole lot more – you have a test, but then what? That kind of thing.

This emphasizes why a lot of times, you wanna go to a specialty place like MD Anderson, because they did the bone marrow biopsy, and the tech put it in the wrong solution, and it destroyed the sample. But they were gonna hold off my induction. So, the doctor was pretty mad, but my first attempt was a failure. But then, he said, “Well, ultimately, you’ll probably go for a stem cell transplant. We’re gonna hook you up with MD Anderson right away, even during your induction.”

And, the first thing they do here is genetic testing. So, at that point, I got a genetic test – successful genetic test – and it was interesting because the results came in, I got the labs, and I’ve done science – I’m a scientist, I’m a geologist – but it’s just a lot of alphabets, and it’s very complicated. They’re worse in the summaries. It said, “No deletions found, no translocations found,” things like that, but you really couldn’t understand the rest of what was in there, and you kind of suspect there was something hidden in there.

But I sat down with the doctor here, and he went over it. It said basically, I was a standard-risk patient, and my FISH and cytogenetics showed that I had tetrasomies – so, four versions of the genes instead of the normal two. And, he says, “So, if you wanna look at it, that’s kind of a good news thing because we have drugs that target certain things, you have lots of those things to target – multiple copies of those things,” so that kind of relaxed me a little bit. I think it actually impacted my standard of care a little bit, and certainly, my quality of life, because I think the doctors relaxed a little bit too. They wanna get ahead of it if you’re high-risk.


So, Peggy, when Doug mentions he got a report from FISH and cytogenetics, which is essentially gobbledygook –

Peggy Lindley:

It is.


What did you do when you got that?

Peggy Lindley:

They told me right off the bat that I had myeloma, and that I had an aggressive form. So, I went through the rounds, and I responded very well to induction therapy.


And, by “aggressive form” – how did they find that?

Peggy Lindley:

They just said it was aggressive. They didn’t really – they said the FISH test – it was still Greek to me. So, now, two years later, I’m understanding it more and more, but what it was was the translocation of the 4-14. So, I find that, and I ask doctors about that, and they say, “Yes, it is aggressive, it’s on the aggressive form, but it’s still on the intermediate side.” So, I’m not as concerned, but at least the doctors know, and they’re aware.


And, “4-14” means that chromosome 4 and chromosome 14 pieces have been swapped places?

Peggy Lindley:

I don’t really understand that yet, but I’m learning. That’s good, very good. See? I’ve learned something more.


There you go. And, Nancy, you’ve been at this for a little while, so you probably understand a little bit more about genetic testing. What’s the impact been on you?


Well, I’m getting there, but it is – it’s a lot of alphabet soup. It’s hard to retain. But, yeah, I had genetic testing done right away once the myeloma became active, and I also had aggressive highrisk. I had abnormal female karyotype, monosomy 13, the P-53, and a translocation – but I forget which one. And, what was interesting is in my initial appointment with my oncologist, he thought I was low-risk and talked about treatment, but when all the final results came back, turned out I was high-risk, which meant completely different treatment. So, that was a shocker.


So, expand on that a bit. How did that high risk change your treatment?


He recommended a clinical trial instead of what they were gonna put me in, which included being treated with carfilzomib, which, at the time – this was 2015 – carfilzomib was being used mostly for people who had relapsed, and they were doing a clinical trial to see about treating patients up front with it that are high-risk. Why wait until they relapse? So, I had that in addition to the PACE cocktail with thalidomide, something else – there were seven different chemos.


So, that was important that that high risk for you helped determine a change for the treatment, but you got into that clinical trial, and that was an effective trial, by the way, so that’s good.


Yes. It was definitely effective for me.


Good. And, George, when you did – or, you did genetic testing, I presume, and did it show anything?


Yes. The first time we did it was to run tests to get ready for the first stem cell transplant, and at that time, I didn’t understand the importance of all that. The oncologist that I was working with at the time did explain as much as he could, and in layman’s terms as best he could, but it still mostly went over my head. I was more thinking about the actual transplant itself than anything else. But, when I came to MD Anderson and got ready for – I was getting ready to try one of their clinical trials, they ran some more tests then, just to see how things had progressed through that number of years, and so, I’ve actually had partially two of them.


So, I was gonna ask – have any of you had subsequent genetic testing where results have changed after your treatment for myeloma? You’re nodding your head, Nancy.


Yeah. Over a year ago now, I had my genetics repeated, and all the abnormal stuff went away, so that was pretty exciting, because I was now MRD-negative, so that was very reassuring. And, I actually just had another bone marrow about 10 days ago now, so I’m still waiting for those results to see what’s happened.


And, are they gonna test that bone marrow for genetics as well?




Because you might find there are changes. You might find there’s a translocation where there wasn’t one before, you might find there’s a deletion where there wasn’t one before, because this myeloma is a fairly tricky disease, and we talk about the myeloma clone as made up of a percentage of different mutations, some of which get cured by treatment, and others of which expand because they were not affected by the treatment. It’s pretty interesting, in a lousy sort of way. Anything else, Doug, that you thought was interesting that came out of your genetic testing?


It looked pretty standard and fairly boring to people who liked exciting genetic testing. I did have two, so I had one – so, my original doctor says, “We like to get patients early to get an original profile.” That’s kind of like your baseline. And, I also had one right before my stem cell transplant because they like to check to see if anything happened, but the doctor says the chemo messes with myeloma – obviously, that’s why you have chemo – and he says, “You’ll probably see some differences, but that’s why we like an original one, too.”

So, I compared the two, and really, there were no extra risks – high risks or anything – that appeared. The only thing that popped up was instead of tetrasomies, I had trisomies also, but that was pretty much it. So, it didn’t really change anything in terms of treatment in terms of work that was being planned.


And, tetra- and trisomies are basically quadruple and triple duplications of your chromosome. So, I’m wondering, both Peg and George, have you had a second MRD testing, and why did you end up doing that?


I don’t know that we’ve had a second one. Have we?

Peg Burrell:



We have?


Oh, you had MRD testing?

Peg Burrell:

Yes, I’m pretty sure we had. He was in a clinical trial in 2018 at MD Anderson, and I’m sure they did it then. They also did some very unusual – not normal, but they were genetic tests that they ran as part of the – at the beginning of this study so they could get a baseline, or find out what other things might be going on.


And, he did this MRD trial testing to determine if he had a significant number of cells with this BCMA antigen in order to qualify for this CAR-T trial?



Peg Burrell:

In the beginning, yes. That was in 2012. And then, he had his – he was in a second trial that was called Amgen 224. That’s all we know. It’s a mystery. And, it worked for him for about a year. It brought his cancer numbers back down, and there was a lot of genetic testing for that particular trial.


So, I think just about any of these new trials that are coming onboard these days incorporate MRD testing. As we all heard earlier and we know, MRD is a really good prognosticating factor in terms of if a patient becomes MRD-negative, they show that they have better progression-free survival and overall survival. It’s not really used to change or determine treatment, but those trials are going on as well, so I think that’s really important.

And, there’s so many other avenues – again, back to this genetic testing, I always wonder, well, suppose I’m MRD-negative, but I’m high-risk, versus I’m MRD-positive but I’m standard-risk. Which is better? I don’t know. I don’t think the community knows, and I think it may be individualized as well. What do you all think about that? Any feelings?


For me, I think that’s probably what is gonna be revealed to us as we move forward with this because the genetic testing idea is fairly new, at least to the patient. I’m sure that the doctors could pull each and every one of our files and show us all sorts of information that they just haven’t shared with us because of – it can be kind of complicated and hard to understand. Sometimes, I think that they try not to give us too much information because then, we have a tendency to think we can get on the computer and try to diagnose ourselves or find something.


Little Rock, Arkansas was kind of the pioneer in what’s called gene expression profiling. And, we all have 25,000 genes, let’s say, and Arkansas kind of developed a test which showed that there were about 70 genes that were very distinctive in resulting in high-risk myeloma, except they were distinctive across, say, 50 percent of patients, but not the other 50 percent of patients. And then, they tried to get it down to even 15 or 25 genes, let’s say, and therefore, it was less accurate.

So, I think you’re right, George. I think there’s still a lot of work that’s gonna be done in this area to make it something that really can be useful in terms of having the best treatment for patients. There’s an interesting trial going on right now that’s looking at treating myeloma patients according to a mutation. If we have a certain mutation and we have a drug to treat that mutation – it could be for a different cancer – then that patient will be given a baseline of treatment plus that drug to try to increase the amount of precision therapy that’s given for given patients.

So, this whole area of genetic testing, as I see it, is really fascinating, complex, difficult to understand at the patient level, but can mean a lot for us as we go forward. What do you think? Peggy, I think you’re the most newly diagnosed patient here. What does all this mean for you?

Peggy Lindley:

I think his analogy of the alphabet soup is exactly right because when I looked at mine, I was like, “Those are words? Yeah, no.” But, I tried not to worry about it because I figured I was going to the best when I came to MD Anderson, so I really didn’t worry about it too much because I figured it’s gonna be what it’s gonna be, and I wanna – the quality of life is what I’m looking for.


Well, I think you’re really correct there. The fact that you’re going to MD Anderson, the fact that we are getting second opinions from myeloma specialists who have a much better shot at understanding this stuff than we do is really key to long-term treatment success for us. There are a lot of drugs out there. In fact, I’ll often tell patients when I was diagnosed in ’95, there weren’t many treatment options. Today, the good news is there are lots of treatment options, but the bad news is there are lots of treatment options. You really don’t know what’s best for you, and that’s why it’s so important to have a myeloma specialist on your side.


Well, with that, the idea of being able to target certain things within myeloma is gonna be a big step forward, I think, because it’ll help eliminate some of the things – the trials that we might try, or have to make a decision – “Do we try this or not?” We’ll be able to say, “This didn’t work, so this will – let’s try this.”


Yeah. There’s a drug called venetoclax, which has been shown to be effective in myeloma patients with a certain mutation – 11-14 – and it’s in trials now to hopefully, one day, get approved for that class of patients.


One of the things I’d probably add to the discussion is there’s a lot of talk about patient advocacy, and if you follow any of the myeloma discussions, it is almost all genetics now. That’s kind of where cancer research has gone, even in other cancers. But, one of the things that I see genetic testing is doing is my ability to help the doctor help me.

So, if it was more difficult to get genetic testing – maybe not local to a major facility or something – I would still encourage it because that’s helping the doctor see your specific disease, and maybe helping them modify what you have as a standard treatment in terms of what you need instead of the standard treatment. Plus, you have it in the bank then. You have your test, and if something is discovered a year from now, that this particular drug works with this particular genetic profile, you can go back, and look, and say, “Do I have that? Is that something I should consider?”


Good point. Nancy, how important do you think it is for patients to 1) Insist that they get some type of genetic testing, and 2) to try to understand what’s going on?


Well, I think it’s extremely important. For me, it was a major change in treatment. Without genetic testing, I doubt I would be MRD-negative right now because my treatment path went along a completely different way. So, I think it’s extremely important. What was the second part of your question?


How important it is for the patient to understand it.


I think everybody has a different level of what they can understand, and that it’s important for your oncologist to give you that information in language that you can understand, and to the level that you want. A lot of that’s gonna depend on your background, your education, what makes sense to you. I came from a medical background, so I wanted a little more knowledge, and my doctor was great in giving that to me.


Patients need to ask questions.


Yes, they definitely need to ask questions, and then, the physician needs to communicate in a way that the patient’s gonna understand because it is a lot of gobbledygook, and I often – I have a hard time understanding it with having a medical background, and I often wonder how you make sense of this without having a background. It’s difficult.


This has been a good discussion, and I think we’ll wrap it up. Peg, maybe I’ll start with you. Folks listening to this discussion – what do you think they should take away from it?

Peg Burrell:

Well, definitely, talk your physician, learn as much as you can. Support group for us has been very beneficial and helpful. Our support group brings in different people in the medical profession and has explained a lot of the things and given us knowledge we wouldn’t have had otherwise. And then, working with – sometimes, insurance may not wanna pay for certain tests. I’ve found that in working with MD Anderson, their financial people – we had some tests that were gonna be – I think they said “non-concerted.” I’d not heard that before. It basically meant they were questioning the test and whether or not it was necessary. So, MD Anderson was very helpful with that.


George, can you add on to what your better half says?


For me, it’s been working closely with Dr. Patel and her team, both when I was part of the clinical trial and even now, with the three-track regimen that they have me on. Again, ask questions, try to understand as much as you can, and I, too, support the idea of working with a support group and sharing information with each other because you find out so much more of what someone else heard through their doctor and their team because we all do have different doctors.




I think it’s real important for people to go to a center of excellence, at least for a second opinion, if not for your treatment. They are the cutting-edge people that are gonna be able to treat you the best, and you can just google “center of excellence, multiple myeloma,” and you’ll get a list of all the centers all across the United States. I think it’s made a huge difference. I was treated at UAMS in Little Rock, and I wouldn’t have had it any other way. I was fortunate to be able to go there.


Good. Peggy?

Peggy Lindley:

I think as patients, we all need to be as informed as you can, and work with your doctor, and get confidence in your doctor. If that doctor doesn’t do it for you, find another one, but be confident in your doctor that they’re gonna do what’s right for you, but you have to be educated as well.


I heartily agree. Doug?


I’d stress the same as everyone else, and also recommend definitely having genetic testing. One of the things that are kind of an intangible benefit is even your own stress level. You would think that, for instance, if you’re tested and you find out you’re not high-risk, you’re standard-risk, that’d be the end of it, but it turns out, for instance, even with me, my doctors will actually modify – have modified my treatments, even my maintenance treatments, because I’m not high-risk and I have very stable myeloma.

So, they’ll say, “Well, we’re going to de-escalate. We’re gonna take you off all these drugs. You don’t need all of them, so we don’t wanna over-treat, either.” Nobody wants to be over-treated with all the symptoms and things like that. When they initially said that, I was like, “Wait a minute, I’d rather just start adding drugs. Let’s just kill this thing.” But, that’s right, and I think the fact that I can go back to genetic testing and look at what he was saying about stability over a period of years and things like that just gives me more of a comfort level that that’s probably the right answer, and I don’t need to be taking all these drugs if they’re not gonna benefit me in the long term, or I could switch drugs if I need to.


So, I guess I’d summarize it by thanking you all. You’re all terrific examples of being your own best patient advocate. If we aren’t advocating for ourselves, who else should? It’s really up to us, and the good news is there are so many resources for good information out there.

Please remember the opinions expressed on Patient Empowerment Netowrk (PEN) are not necessarily the views of our sponsors, contributors, partners or PEN. Our discussions are not a substitute for seeking medical advice or care from your own doctor. That’s how you’ll get care that’s most appropriate for you.

Essential Tests for Diagnosis and Monitoring

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

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:


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

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

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)

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

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-raysCT 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.

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

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.

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