10 cancer symptoms men shouldn't ignore
Understanding Multiple Myeloma Stages And Prognosis
Multiple myeloma is a cancer of your bone marrow. Specifically, it affects your plasma cells, which are white blood cells that make antibodies to fight germs and prevent infection and disease.
When you're first diagnosed with multiple myeloma, your doctor will assign it a stage that describes how serious it is at that point. The stage is usually indicated with a number, and that number has a lot to do with the type of treatment your doctor will recommend and what you can expect from your disease going forward.
Your doctor will assign your cancer a stage to help them decide how to start your treatment for multiple myeloma. (Photo Credit: Tetra images/Getty Images)
There's no cure for multiple myeloma, but treatment can bring it into remission, meaning you don't have any sign of the disease.
The same tests your doctor uses to know if you have multiple myeloma will also help them tell what stage it's in. These include:
Staging is the process by which your doctors will figure out if your cancer has spread to your other organs and, if so, how far it has spread. The stage describes how serious your cancer is and gives your doctors a place to start when deciding how best to treat it.
Cancer staging can be a complicated process. Different staging systems may use different factors in determining how serious your cancer is. Doctors use a couple of different staging systems for multiple myeloma. The two main systems for multiple myeloma are the Revised International Staging System (R-ISS) and the Durie-Salmon staging system.
Doctors usually use the R-ISS for staging multiple myeloma these days. This is because it's a bit simpler than the Durie-Salmon staging system, and it seems to give a better idea of prognosis for most people. Doctors started using the ISS in 2005. It was revised in 2015 by changing some of the biomarkers that're used. Biomarkers are levels of chemicals in your body that give a snapshot of what is happening in your body at that time.
The R-ISS is based on the measurements of four biomarkers, including:
The amount of albumin in your blood. Albumin is a protein your body makes that circulates in your blood. It gives your doctor an idea of how well your liver and kidneys are working.
The amount of beta-2 microglobulin (B2M) in your blood. This is a protein that your body normally makes in small amounts. But cancer can cause you to make lots more of it. High levels of this protein in your blood can be caused by certain blood and bone marrow cancers, such as multiple myeloma, chronic lymphocytic leukemia, and some lymphomas.
The amount of lactate dehydrogenase (LDH) in your blood. This protein helps your cells make energy, and it's found in all your tissues. But it's highest in your muscles, liver, kidneys, and red blood cells. When you have disease or tissue damage, your cells release LDH into your bloodstream, so high levels can show you have something damaging your muscles and organs.
The gene abnormalities in your bone marrow cells. Your doctor will take a biopsy from your bone marrow and send it for a genetic test called cytogenetics using a technique called fluorescence in situ hybridization. The lab technician will look at the chromosomes from your bone marrow cells under a microscope. These cells may have too many chromosomes, too few chromosomes, or abnormal chromosomes where some of the information has been deleted or moved. Doctors divide these abnormalities into categories based on how serious they are.
Based on your levels on these four biomarkers, your doctors will assign a stage, as follows:
Stage I
Stage II
Your biomarker levels don't fit in either stage I or III.
Stage III
The Durie-Salmon staging system is an older system that doctors don't use as often because it's more complex. It's based on the total number of cancer cells in your body and some biomarkers, including:
The amount of hemoglobin in your blood. Hemoglobin is a protein in your red blood cells. It carries oxygen from your lungs to your other tissues. Blood disorders and certain diseases can cause your hemoglobin levels to be higher or lower than normal.
The amount of calcium in your blood and bone imaging to see if you have lesions. Lesions on your bones can make you leach calcium into your bloodstream, so your blood calcium may be higher than normal.
The amount of monoclonal (M) protein in your blood and pee. Abnormal plasma cells make a protein called M protein or M spike. These proteins are antibodies that have a couple of different components: IgG and IgA. Myeloma cells are one of the types of cells that make this M protein. If your plasma cells are making M protein, your doctor will be able to detect it in your blood and pee.
How well your kidneys are working according to the amount of a protein called serum free light chains in your pee.
Based on your levels of myeloma cells and on these biomarkers, your doctors will assign a stage as follows:
Stage I
Stage II
Stage III
CRAB criteria are a way for your doctor to tell if you have organ damage because of your cancer. These criteria include:
This is a precursor to multiple myeloma that may or may not develop into active multiple myeloma. When you have it, you probably won't have any symptoms, but you will have the genetic changes that cause multiple myeloma.
If you have smoldering multiple myeloma, you will show the following on lab tests:
Many people with smoldering multiple myeloma only find out they have it when M proteins show up in their blood or pee during a routine checkup. So you can have this for many years before it develops into active multiple myeloma. And sometimes, it never develops into multiple myeloma. Right now, there's no test to know which people with smoldering multiple myeloma will progress to active multiple myeloma.
But your risk of progression seems to be highest during the first 5 years after you're diagnosed. After the first 5 years, your risk of progression goes down. Your doctor will test you periodically for any signs of this and will be prepared to start treatment right away.
If you're having symptoms or you have signs that the cancer has damaged your organs, then you have active myeloma. The criteria for active myeloma include:
MDEs include any of the following:
As active multiple myeloma gets worse, you'll likely feel sicker, with fatigue or bone pain. You may have anemia, bleeding problems, or a lot of infections. Other symptoms of advanced multiple myeloma include unusual fractures, shortness of breath, weakness, feeling very thirsty, and belly pain.
Refractory myeloma is when your disease doesn't respond to treatment or comes back after treatment. There are two types:
Relapsed and refractory myeloma. This is a relapse of disease when you've had some response to treatment, then either get nonresponsive while on salvage therapy (treatment given when standard treatment doesn't work) or progress within 60 days of your last treatment.
Primary refractory myeloma. You don't respond to any treatment. There are two subcategories:
Relapsed myeloma. After a while without treatment, you need salvage therapy but do not meet criteria for "primary refractory" or "relapsed and refractory" categories.
Remember, no two people are entirely alike. Your treatment will be tailored to you, and your response to treatment will be unique to you. And many factors can affect your outcome. Doctors use survival rates from clinical trials to estimate your outcome. But again, these are estimates based on averages from studies with many people. So these numbers can't tell your doctor how you will do as an individual. Instead, they are meant to help doctors decide how aggressively to treat your cancer. Also, treatment strategies continue to improve over time, and rapid advances have been made in the past few years in particular. So sometimes, these survival numbers don't show how well the newer treatments work.
Having said that, the main factors that doctors consider when estimating your prognosis for multiple myeloma are:
Doctors will talk about prognosis in terms of overall survival (OS) rate and progression-free survival (PFS) rate. OS rate is the average percentage of people who are still alive for a certain length of time after they were diagnosed or started treatment, generally 5 years. PFS rate is the average percentage of people who go through treatment without their cancer getting worse or spreading.
Based on the R-ISS:
What these numbers show is that most people who are diagnosed with multiple myeloma in stage I or II are still living 5 years after they were diagnosed. And for people in stage I, slightly more than half go through treatment without their cancer getting worse. Fewer people who are diagnosed in stages II and III go through treatment without their cancer getting worse. However, many people who are diagnosed even in stage III are still living 5 years after their diagnosis.
High-risk cytogenetics can negatively affect your prognosis. These high-risk genetic changes include del(17p), t(4:14), and t(14:16). In general, people with these changes live for a shorter time than 5 years after diagnosis. For instance, people with t(14:16) cytogenetics have an OS of about 4.1 years and a PFS of 2.1 years. So if you have these changes, your doctor will likely take a very aggressive approach when treating your cancer.
Your doctor may suggest you enroll in a clinical trial if you are eligible. In a clinical trial, you will get leading-edge treatment for your cancer. And you will be helping future people who are diagnosed with multiple myeloma by improving their treatment options.
The stage of your multiple myeloma is just one thing that predicts how much treatment will help you. Other things that make a difference include:
Your age. The younger you are, the more likely it is that your treatment will work without your cancer getting worse.
Your results on some blood tests. These include levels of B2M, albumin, LDH, and creatinine. These results tell your doctor how much cancer you have and how well your kidneys and liver are working.
The genetic changes in your cancer.
How fast your cancer is growing. Your doctor can use a test called plasma cell labeling index to figure this out.
Your general health. Your doctor will use the performance status (PS) scale to describe your general health. They'll rate your general health on a scale of 0-4, with 0 being perfectly healthy and able to care for yourself without restrictions. A PS of 4 would indicate that you need help caring for yourself and are completely confined to your bed or wheelchair.
How you respond to treatment. For instance, some people respond really well to treatment and their cancer goes into complete or partial remission, which means you have no or very few signs or symptoms of disease.
Researchers are constantly doing clinical trials on treatments for multiple myeloma, so the treatments have gotten better in recent years. There are really good reasons to be hopeful about your outlook.
Multiple myeloma is cancer of the plasma cells in your bone marrow. To help decide on your best treatment plan, your doctor will assign your cancer a stage. They usually use the R-ISS to do this, but they may also use the Durie-Salmon staging system. Because every individual person is different, a helpful way to think about staging is as a way for your doctor to decide where to start your cancer treatment. Of course, people who are diagnosed in stage I or II do the best with treatment because they tend to be healthier at diagnosis. However, treatments for multiple myeloma continue to improve, so there are good reasons to stay optimistic about your treatment no matter what stage you were diagnosed in.
What is the life expectancy with multiple myeloma?
This depends on many factors, including the stage of your cancer at diagnosis and the kind of genetic changes your cancer has. Cancer doctors generally don't like to talk in terms of life expectancy because so many factors can affect your outcome, including how well you do during your treatment. Keeping a hopeful outlook can help. Thanks in part to newer treatments, most people diagnosed with stage I or II multiple myeloma are still living 5 years after they are diagnosed. And about 40% of people who are diagnosed in stage III are still living 5 years after they are diagnosed. These numbers will likely continue to improve as research advances the treatment options. So some people live for 10 or more years with it.
Is multiple myeloma curable?
No, unfortunately, multiple myeloma cannot be cured. This is because there's no way to completely get rid of the genetic changes in your bone marrow once you have them. Your doctor will instead focus your treatment on keeping the cancer from getting worse and reducing your symptoms so you maintain a good quality of life. However, some people do go into either complete or partial remission during treatment. This means that your have no or very few signs or symptoms of disease. The cancer could come back, but your doctor will monitor you for those signs so they can start treatment again right away.
How serious is multiple myeloma?
Multiple myeloma is a serious type of cancer that affects your blood cells and may need an aggressive treatment regimen. But it can be managed well, especially if you get diagnosed early. The best thing to do is take good care of your general health and follow your cancer care team's plan.
Multiple Myeloma Remission: A Glimmer Of Hope
As soon as I entered complete remission for multiple myeloma, I felt a glimmer of hope.
The word "remission" carries a sense of hope and relief, like the first ray of sunshine breaking through the clouds after a storm. It means that the insidious signs and symptoms of cancer have diminished, bringing a glimmer of light to those fighting against it. This remission can be partial or complete, with the latter being the ultimate goal. In complete remission, all traces of cancer have disappeared, giving patients and their loved ones a sense of triumph and victory over this relentless disease.
But even in complete remission, there is still caution and a constant awareness. For doctors, a full remission lasting five years or more may suggest a cure, but it is not guaranteed. The risk of recurrence is always like a menacing shadow waiting to darken our spirit suddenly.
As I settled into the cushioned chair, mentally bracing myself for another round of Kryprolis (carfilzomib) and other chemotherapy drugs, a sense of dread washed over me. These medications were supposed to cure me, but at what cost? The potential side effects and the toll on my body weighed heavily on my mind. However, instead of succumbing to my fears, I chose to reframe them as "healing elixirs," hoping that this shift in perspective would help me endure the grueling treatment process.
I even performed reiki on the clear bags of fluids marked with a yellow "hazardous" label. I invited the nurses who carefully inserted needles into my arms to join me in visualizing positive energy. Reiki therapy is rooted in Eastern beliefs about the flow of vital energy through your body. The idea is that a skilled reiki practitioner uses light touch or hovering their hands above your body to guide this energy towards balance and healing.
I turned to my family and closest friends for support. They envelope me with their love and uplifting words, providing a beacon of hope during this challenging time. In addition, I hosted monthly wellness circles and joined support groups. Being surrounded by others who understood my journey helped alleviate the feeling of isolation. Every day, I hold a gathering called the Bells of Hope — a group where we take seven to 10 minutes to find inner strength and peace through moments of silent contemplation. We start by asking ourselves, "What are you grateful for?" This daily practice and its connections have given me the courage and resilience to keep moving forward.
Have you read the New York Times bestseller "Radical Remission: Surviving Cancer Against All Odds" by Dr. Kelly A. Turner? This book uncovers eight factors that can lead to spontaneous remission from cancer — even after conventional medicine has failed. The factors are listed below:
For as long as I can remember, I have held steadfast to the notion that positive thinking can significantly impact our lives. However, after seeing the movie titled "The Farewell," my beliefs have been bolstered. This poignant film (spoiler alert) follows the true story of a Chinese family grappling with their beloved grandmother's terminal illness. As they navigate through the emotional turmoil of her limited time left, they also struggle with the cultural tradition of whether to tell a loved one or keep a prognosis a secret. This ethic is considered acceptable in China, but it is deemed illegal in the United States.
Despite the doctor's grim prediction of only three months to live, the grandmother defies all odds. She continues to survive more than six years later. Is it truly the power of positive thinking at work here, or is something more mysterious and unexplainable at play? This thought-provoking movie forces me to question the fragility of life and the role our thoughts may have in determining its course. Can we overcome illness and adversity, or is it just a fleeting illusion?
Another film to watch is the thought-provoking documentary "Source: It's Within You." Through interviews with dedicated scientists and real-life case studies, the show explores the incredible concept of using our minds to heal ourselves. One particular story captured my attention. A man who is also a doctor diagnosed with multiple myeloma claimed his cancer-free status was achieved through focused meditation. Using the combination of exploration, analysis and technology, we can witness how his mind has transformed his thoughts and blood composition. As the credits rolled, I couldn't help but reflect on how this groundbreaking research challenges our traditional understanding of healing and the incredible power of our minds.
Based on my last bone marrow biopsy in June 2023, I am grateful to be in complete remission. In the world of multiple myeloma, minimal residual disease (MRD; amount of cancer that remains in the body) negativity is considered a significant prognostic tool. It signifies that no traces of disease were detected after treatment and has been linked to improved overall survival rates. Doctors use this measure to assess the effectiveness of treatments and predict which patients may be at risk for relapse. It also serves as a vigilant guard, monitoring and confirming remissions while warning early if the cancer returns.
As of October 2023, I only receive one monthly immunotherapy injection, Darzalex Faspro (daratumumab), and no other medications. Though I am currently basking in complete remission, my positivity, combined with the accumulated results of all the healing elixirs and support, will continue to play an essential role in my journey toward defeating this illness once and for all.
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10 Multiple Myeloma Questions And Answers: Treatments And Side Effects
Patients with multiple myeloma now have several available treatment options, so it's important to have answers to some of the frequently asked questions.
An expert spoke with CURE® to discuss available treatments for patients with multiple myeloma, such as stem cell transplants and CAR-T cell therapy.
With new treatments on the horizon for patients with multiple myeloma, it's important to understand what the standard treatments are, the role of CAR-T cell therapy and how to manage side effects.
Following the CURE® Educated Patient® Multiple Myeloma Summit, Dr. Brandon Blue spoke with us to answer some frequently asked questions.
Blue is an assistant member of malignant hematology at Moffitt Cancer Center in Tampa, Florida and chair of the multiple myeloma summit.
CURE®: How do you know if a stem cell transplant or CAR-T cell therapy is better?Blue: They are basically two different options and are used for two specifically different reasons. Let me give you an example. The reason that patients typically go for a stem cell transplant is once their disease is under control. Typically, stem cell transplant lengthens the period of time that someone's disease is in what we call remission. The first step is to get the cancer from a very high level down very low.
Once it's low, you want it to stay that way, and so that's where stem cell transplant comes in to try to lengthen that period of time that the disease is under control before it comes back. Now that's quite different than CAR-T cell therapy. CAR-T is actually used when the disease has relapsed, meaning that we don't typically give CAR-T to people whose cancer is under control. We actually, unfortunately, give it as a treatment or a therapy when their cancer has relapsed to bring it under control. So they're used for two specifically different reasons.
Why do you need so many lines of treatment before you can be eligible for CAR-T cell therapy?I'll use an analogy. Several years ago, our world was shaken by the COVID-19 pandemic. There were people from all over the country, and all over the world, who were affected by this. The good news is that we found a vaccine, and when the vaccines first came out, they weren't available for everyone right away.
Who did they go to? The people who needed them the most. Those were typically people with a low immune system and people who were elderly. We knew that those were the people who needed the most help. But over time, what happened? It became more and more and more available. The same thing is true for CAR-T cell therapy. This CAR-T is very new. So who did we offer it first to? The people who unfortunately ran out of lines of therapy who didn't have any other treatment options. As we know, the Food and Drug Administration (FDA) recently just approved it to be used in earlier lines of therapy. What will probably continue to happen is that they'll make it more and more and more available. But again, you must remember CAR-T compared to some of these other medicines, is still only in its infancy.
Being that drugs are so advanced these days, should the standard of care not be stem cell transplants?That's actually one that's currently being researched. So typically, what happens is that U.S. Experts all use our brains to try to figure out how we can make things better for patients. But just because we have an idea, we have to test that idea through research, and then after, we test that through research.
That's how we lead to changes within the current standard of care. There's been a lot of different things that people have thought of that could potentially beat transplant. And say, "Hey, we know that transplant is kind of a heavy ordeal. Maybe this will be better or that will be better." But nothing so far has actually been proven to be better than transplant as of yet. There are a lot of things that people are thinking about and trying to be very creative with to try to prove that. So, there's a lot of research that's going out right now, but as of what's approved as of 2024. Unfortunately, there's nothing that has been able to beat it yet. So it's still considered what we call standard of care.
How are blood transplants done and how long is the recovery period?What happens is that we, all in our bodies, make new blood the same way we make new hair and new fingernails — we also make new blood. And the place where we make new blood is in our bone marrow. Say, "Well, how do we do that?" We do that through these things called stem cells.
What we're able to do is give patients high doses of chemotherapy that can really kind of cleanse the bone marrow, because multiple myeloma is a bone marrow disorder. After we've cleaned the bone marrow, now the bone marrow is empty.
So you say, "Well, I can't live without a bone marrow. So what do we do?" We take those seeds or those stem cells, and we plant them in the ground, and now they grow, and they make new blood, just like seeds would get up and grow and make new flowers. Unfortunately, it doesn't happen overnight. So typically, we tell patients that they should expect somewhere about three to four weeks of recovery during that whole process.
Are CAR-T cells easier to extract than stem cells?I wouldn't say easier or harder, because stem cells are a part of your body the same way T cells (white blood cells in the immune system) are. For example, T cells are the main soldiers that fight off infection. The only thing that we're doing is taking those T cells and saying, "Hey, you guys are great soldiers. Let's just change the target, and instead of fighting off infection or COVID-19 or some of those things, let's fight off cancer."
We unfortunately have to teach the T cells how to do that. So that's why the process of CAR-T cell therapy isn't immediate. It takes about four to six weeks for us to remove those cells and now change those regular immune system T cells into what we call CAR-T cells which are now ready to fight off cancer.
How is it known which target to attack, such as CD-38 or BCMA?The good news is that we have options for this disease, so there are a lot of different options. There are a lot of different nuances to why certain drugs are typically used in what order. So this is what we call a patient-specific answer.
One of the things that we're fortunate enough to have in multiple myeloma is actually personalized care, meaning that this is something that could be very specific for your specific type of cancer and it's why we would say, "Hey, you know what? The next step for you might be A, but the next step for the very next person might be B," so that's a very personalized answer. And I would say, talk to your provider, because again, the good news is we have options.
Does neuropathy get better after taking Velcade (bortezomib)?So unfortunately, that's one of the best drugs. I'll say, fortunately, at least, that's one of the best drugs for multiple myeloma, but unfortunately, it has one of the stinkiest side effects.
I'll tell you that neuropathy can actually be a double-edged sword. Sometimes it can be this pain and tingling sensation, but at other times, it can also be numbness. And so with that, sometimes, once we either dose-reduce the Velcade (bortezomib), or even just stop it all altogether, there is a percentage of people who actually do improve.
Now the question will be, will you improve all the way so it goes all the way to zero? Possibly, but typically, there is a significant benefit once you either dose reduce or stop it, if you tell your provider early. So that's the key: once you first start feeling that neuropathy or something's not right, you want to make sure that you bring it to your provider's attention.
How can cytokine release syndrome side effects be treated?One of the things that is a known side effect of CAR-T cell therapy is what they call cytokine release syndrome or CRS. And so, this is something that is a new treatment, because CAR-T is relatively new, but the good news is that we think that we've got it mastered. We have different ways to treat CRS. There is a medication called Actemra (tocilizumab) that works extremely well at decreasing CRS-related side effects, but also sometimes a simple Tylenol will work.
It depends on exactly what's happening at the time, but there are a lot of different options. But typically, if you're at a CAR-T center, they should be very well-versed at trying to make sure that those things work out well for you.
How important is taking vitamin D supplements for patients with myeloma?Up to 80% of patients who have multiple myeloma actually have damage to their bones. What that means is you want to be on medications that can help strengthen the bones. We know that vitamin D and calcium are important. Calcium and vitamin D typically work together to help strengthen bones. So we always recommend that patients have some type of extra medicines that continue to make sure that their bones are as strong as possible during their lifetime.
How do you recommend getting second opinions? Would you necessarily need to go to a different practice/cancer center?What I would say is that everyone who has multiple myeloma needs to typically see a multiple myeloma specialist. You say, "Why is that?" There are a lot of different reasons why someone may have cancer. Some people may have breast cancer, some people may have lung cancer, some people may have colon cancer and some people may have multiple myeloma.
But I'll tell you that multiple myeloma, when you compare it to the breast cancers, the lung cancers, the colon cancers of the world, is a much more rare diagnosis. And so, what that means is you want to make sure that the person who's treating you sees multiple myeloma frequently. If your doctor already does that and they say, "Hey, we see multiple myeloma every day," then you could probably guess that you may be in good hands. However, if your doctor maybe sees multiple myeloma once a year, then we always recommend that you probably see a doctor who is considered a multiple myeloma expert and likely sees multiple myeloma a little bit more frequently.
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