MM Whats Next Archives

After cancer treatment ends, you will face a whole new world. Whether you are creating a survivorship plan or an end-of-life plan, nothing will be as it was before your Multiple Myeloma diagnosis. You will confront new fears, new opportunities to help others, and new social and physical situations.

Let us help you refocus your hope on where you are today and boldly face this new phase.

More resources for Multiple Myeloma What’s Next from Patient Empowerment Network.

What Are Some Clinical Myeloma Relapse Predictors?

What Are Some Clinical Myeloma Relapse Predictors? from Patient Empowerment Network on Vimeo.

Some multiple myeloma patients may relapse, but are there clinical predictors for relapse? Dr. Sikander Ailawadhi from the Mayo Clinic discusses mutations, clinical responses, and test results that may signal a higher likelihood of relapse.

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Lisa Hatfield:

Great, what are some of the clinical predictors for relapse in myeloma and when should patients speak up?

Dr. Sikander Ailawadhi:

Okay, so when we say clinical predictors of relapse, well, let me look at this from the standpoint of a patient’s been diagnosed, they’ve been treated, which patients are more likely to relapse is one way of looking at, and if we are looking for our following up a patient, what are we monitoring to look for relapse? So I’ll address mutates very quickly. So when we say what are the predictors of earlier relapse, the most important things that we know of are on any of the high-risk communications we’ve been talking about, the fact that it’s standard of care to look for any genetic mutations in the center diseased plasma.

So the myeloma cells, presence of any high-risk mutations, for example, there’s one called deletion 17p to certain chromosome mutations like 14;16 translocation, etcetera. Patients should be aware of what mutations their plasma cells have, having high-risk mutations, risk of early relapse or short duration of response.

Similarly, if a patient does not get a deep response to their prior treatment, they are more likely to come out of that response state sooner. One of the tests that has recently been used over the past few years, there’s something called the MRD test, minimal residual disease test, looking for one myeloma cell out of 100,000 or even one million bone bone marrow cells.

If somebody’s MRD-negative, they are more likely to have a longer duration of response. If they’re MRD-positive, meaning detectable disease on MRD test, comparatively shorter duration of response, etcetera. So these are predictors of earlier relapse, there are some other predictors like kidney dysfunction, and typically that happens if somebody has persistent kidney dysfunction because they don’t typically get access to all the drugs, typically relapse occurs sooner.

Now, when somebody is getting monitored for their disease, as I mentioned, we do labs every so frequently every month, every two months, every three months. That is what involves all the myeloma markers, serum lectrophoresis is to look for M spike, free light chains, look for light chain changes. You see what I mean? We know globules look for increases in immunoglobulins, and that’s what helps pick up the recurrence of the disease. 

2022 ASH Meeting | Multiple Myeloma Takeaways

This is my 17th year attending ASH (American Society of Hematology), where typically over 30,000 attendees from all over the world (hematologists/oncologists, lab researchers, oncology nurses, scientists and 300 pharma companies) attend. This year ASH was set up as a hybrid meeting where some attended in person and many, including myself, virtually. I’m grateful to the IMF ( and their sponsoring pharma donors Takeda, Amgen, and Karyopharm for registering me for ASH so that I could learn and subsequently share my patient perspective with you.

My Takeaways

This year’s ASH continued to expand our knowledge on immunotherapies…more CAR-T’s and bispecific antibodies (“T-cell directing therapies”)…as well as more targets besides BCMA…and most importantly, side effects such as cytopenia (lower blood counts), cytokine release syndrome (CRS), neurotoxicity, and infections.  At present, approved treatments in the area include CAR-T’s Abeca and Carvyti as well as the bispecific Tecvayli (Teclistamab), but these are currently only available for patients relapsed-refractory patients with >=4 lines of previous therapy.  The good news is that all of these CAR-Ts and bispecifics are in clinical trials for patients with fewer prior treatments, even newly diagnosed patients in some cases!

Another area that needs better treatment options are Multiple Myeloma (MM) patients considered High Risk (HR) or ultra-high risk (>1 HR factor), as well as High Risk Smoldering Myeloma (HR SMM). Whereas some current studies show that media Overall Survival for MM is 10 years, HR patients are typically half that.  And for HR SMM patients who have a good chance to progress to full blown MM within 2 years, is it possible that treatment at this pre-MM stage could delay progression or actually cure a patient from getting MM.

We know that if we achieve a Complete Response via blood tests which show no sign of an M-spike, that unfortunately the myeloma will still likely return, indicating that we still have myeloma but these tests are not sensitive enough to see it. Tests with more sensitivity are referred to as MRD (Minimal/Measurable Residual Disease) tests (Next Generation Sequencing and Next Generation Flow) from bone marrow biopsies and Mass Spectrometry tested via a patient’s blood. They are good prognosticators but typically not used to help guide treatment (for example, when to stop maintenance). If we knew when to stop treatment or change treatment, patients would more likely do better.

This leads to the discussion that we have many treatments available these days but what’s the best treatment for a patient being newly diagnosed, transplant-eligible or not, maintenance (for how long), treatment at first relapse, subsequent relapses? Many of the study results from ASH try to answer these questions via clinical trial results (but that’s still not a personalized treatment so it’s always important to ask your doctor questions and be part of that shared decision making).

Finally, the important topic of Diversity, Equity and Inclusion (DEI) was discussed more at this ASH than ever before and got its own Spotlight Education session. We need better representation of underrepresented populations in clinical trials. For example, 20% of MM patients are Black and yet they represent <5% of patients in MM trials. If we don’t improve upon this, trial results may lack internal validity resulting in poor external validity for the populations they are meant to serve.

For more patient information about ASH, there are many excellent webinars coming up from your favorite myeloma advocacy organization. And another great source are blogs written by patients (including myself) which you’ll find on the IMF website (

In summary, this year’s ASH continued to amaze me with so many studies in Myeloma, focusing on all stages from Smoldering Myeloma to MM Induction through Relapse. Clearly immunotherapy treatments, CAR-T’s and Bi-specific T-cell engagers were predominant among the oral presentations I attended, providing longer-term data on these new treatments. And importantly, other targets besides BCMA are being investigated.

For someone diagnosed with stage III MM 28 years ago with only 2 treatment options available (MP or VAD-SCT) and given 2-3 years expected survival, I’ve seen incredible progress since 2003 when Velcade was first approved followed by 14 more approvals and many combination therapies. While there continues to be unanswered questions, we now have many more effective treatments for MM, providing patients with better opportunities to manage their disease. Newly diagnosed MM patients can justifiably be more optimistic about their new diagnosis than at any other time in history. ASH2022 highlighted the tremendous advances we have made in treating this cancer for both the newly diagnosed and relapsed patient.

How Long Will Myeloma Maintenance Therapy Last?

How Long Will Myeloma Maintenance Therapy Last? from Patient Empowerment Network on Vimeo.

Dr. Joshua Richter, a myeloma specialist, reviews the goals of maintenance therapy and discusses the timeline for this type of treatment.

Dr. Joshua Richter is director of Multiple Myeloma at the Blavatnik Family – Chelsea Medical Center at Mount Sinai. He also serves as Assistant Professor of Medicine in The Tisch Cancer Institute, Division of Hematology and Medical Oncology. Learn more about Dr. Richter, here.

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Isaac sent us this question. How long does the average myeloma patient remain on Revlimid? And is there a suggested time period? 

Dr. Richter:

Really great question. It depends upon the setting we’re looking at, and for the most part, a lot of people are probably asking about the maintenance setting. So, after initial therapy or after transplant, we put you on Revlimid. How long do we keep you on? The American adage has always been, “More is better,” so as long as you tolerate it and as long as it works. Outside of the U.S., they’ve done a couple of studies looking at one year and then stopping, or two years and then stopping.  

And in a big trial that got presented a year or so ago, they compared the two years then stopping versus just staying on, and the people who just stay on do better.  

So, now the current thinking is just keep you on long-term. What’s going to change that in the long term is we’re starting to use a technology called MRD, minimal residual disease, so, doing a marrow and trying to find one in a million or one in 10 million cancer cells.   

And then, there’s something called sustained MRD meaning if you do two MRD analyses at least 12 months apart and they’re both negative, we call that sustained MRD-negative.   

And, there’s a hint that some people on maintenance Revlimid who have sustained their MRD negativity, they may do just as well stopping versus staying on it. We don’t know exactly who that is yet, but that’s going to be better understood in the next few years.  

How to Make an Informed Myeloma Treatment Decision

How to Make an Informed Myeloma Treatment Decision from Patient Empowerment Network on Vimeo.

When faced with several treatment options, how can you decide on the best therapy for your myeloma? In this explainer video, Sandra and her doctor walk through important considerations when choosing a plan, and provide advice for partnering with your healthcare team.

Download our Myeloma Office Visit Planner to help you have productive conversations with your healthcare team, here.

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Hi, I’m Sandra. Nice to meet you!

Several years ago, I was diagnosed with multiple myeloma. I had bone pain and felt very tried so I went to see my doctor – my bloodwork indicated that it may be multiple myeloma and I was referred to a hematologist.

After a series of tests, my diagnosis was confirmed. I was overwhelmed when I learned that I had a blood cancer, but my hematologist, Dr. Reynolds, told me more about the condition and how it’s managed.

Here’s Dr. Reynolds – she can explain it further.

Dr. Reynolds:

Hi! I’m Dr. Reynolds, and I’m a hematologist specializing in the care and treatment of people with myeloma. The different types of myeloma are:

Monoclonal gammopathy of undetermined significance or MGUS (pronounced em-gus or M-Gus). MGUS typically has no signs or symptoms and is characterized by an abnormal protein in the blood or urine.

And, smoldering myeloma, which is a very slow-growing type of myeloma. It also does not present with symptoms. Patients with smoldering myeloma have a higher chance of needing treatment, so blood and urine studies are ordered regularly.

Last is multiple myeloma. Multiple myeloma is a buildup of plasma cells in the bone marrow that crowds out healthy cells, causing symptoms and other problems in the body.


As part of my diagnosis, Dr. Reynolds ordered a series of tests that included a blood test, bone marrow biopsy, urine test, and imaging.

Dr. Reynolds:

That’s right. We also did additional testing to identify any specific chromosomal or DNA abnormalities to get a better understanding of the genetic nature of the myeloma cells. The results of these tests helped us learn more about the extent of Sandra’s myeloma, her prognosis, and which treatment plan could be most effective.


After I was diagnosed and we had all of my test results, I met with Dr. Reynolds, and she walked me through the goals of treatment for my myeloma.

Dr. Reynolds:

Right! First, we talked about the clinical goals of treatment, which are to slow the progression of the disease and to induce remission.

And, it’s important to note that because each person’s myeloma is different, they are treated differently – be sure to discuss the specific goals of YOUR myeloma with your doctor.

Sandra and I reviewed the effectiveness of each treatment option, including how treatment would be administered, and took all of her test results into consideration to make sure we found the best, most personalized treatment option for her myeloma.


Next, we talked about another key treatment goal: symptom management. Dr. Reynolds asked me to let her know about any symptoms that I experience.

Dr. Reynolds:

Exactly, Sandra. A significant change in symptoms can indicate that it may be time to adjust treatment, if the symptoms are due to the prescribed medication, or that the disease might be changing.

Common symptoms may include fatigue or weakness, loss of appetite, excessive thirst, and weight loss, among others. This is why it’s important to not only have lab work and regular visits with your hematologist, but it’s essential to share about any symptoms you may be having, even if you don’t think it’s related to your myeloma.

And, last but not least, we discussed the most important treatment goal: Sandra’s goals. Sandra let me know that she’s very social and enjoys traveling and spending time with her family – we wanted to make sure she could continue doing the activities she loves.


Then, Dr. Reynolds reviewed each of the treatment approaches with me, including potential side effects and how it may impact my lifestyle. We discussed the pros and cons of each option, and we went over what our next steps would be if the treatment plan needed to be adjusted.

Dr. Reynolds:

Exactly! When deciding on therapy, you and your doctor may also consider:

  • Your age and overall health,
  • Any presence or history of other medical problems, and
  • The financial impact of a treatment plan.


In addition to asking questions, my sister, Beth, took notes during our appointments, since it was often hard for me to absorb everything at once.

We also made sure to talk about the appointment on our way home, while the information was fresh on our minds. And we did our part by researching myeloma and bringing a list of questions to each appointment.

Beth found an office visit planner on the Patient Empowerment Network website that helped me organize my health info and questions.

Dr. Reynolds:

As you can see, Sandra and her sister were actively engaged in each care decision. It’s vital that patients feel empowered to speak up. If you can, bring a friend or loved one along to your appointment.

And, if you are able, it’s a good idea to seek a second opinion or a consultation with a myeloma specialist to help you feel confident in your care decisions.


Dr. Reynolds let me know that she would monitor my condition through regular physical exams, blood work and frequent communication. She made Beth and I feel included in the decision-making process, as if it were a collaboration.

Dr. Reynolds:

That’s right! This is a partnership. So, what steps can you take to be more engaged in your care?

  • Bring a friend or loved one to your appointments.
  • Understand and articulate the goals of your treatment plan.
  • Ask about relevant myeloma testing.
  • Learn about your options and weigh the pros and cons of each approach.
  • And, consider a second opinion or a consult with a specialist.


That’s great advice, Dr. Reynolds. To learn more, visit to access a library of tools.

Thanks for joining us!

How to Play an Active Role in Your Myeloma Treatment and Care Decisions

How to Play an Active Role in Your Myeloma Treatment and Care Decisions from Patient Empowerment Network on Vimeo.

How can you actively participate in your myeloma care and treatment decisions? Engaging with your healthcare team is essential and may lead to better overall outcomes. In this program, Dr. Rafael Fonseca provides tips for how best to advocate for yourself or a loved one, as well as tools for making treatment and care decisions.

Dr. Rafael Fonseca is the interim director of Mayo Clinic Cancer Center and serves as the director for Innovation and Transformational Relationships at Mayo Clinic in Arizona. Learn more about Dr. Fonseca here.

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Katherine Banwell:    

Hello and welcome. I’m Katherine Banwell, your host for today’s program. Today we’re going to explore how to engage with your healthcare team when diagnosed with myeloma, and we’ll discuss the patient’s role in care decisions. Before we get into the discussion, please remember that this program is not a substitute for seeking medical advice. Please refer to your healthcare team about what might be best for you. Let’s meet our guest today. Joining me is Dr. Rafael Fonseca. Dr. Fonseca, welcome, and would you please introduce yourself?

Dr. Rafael Fonseca:   

Yes, of course. Happy to do that. Thank you very much, Katherine.  

I am a hematologist/oncologist, but I specialize in the area of multiple myeloma. I work at the Mayo Clinic in Arizona. I currently serve also as interim executive director for the Mayo Clinic Cancer Center that is at large across the Mayo Clinic enterprise. But at heart, I’m a myeloma doctor and I love to take care of myeloma patients. I devote my research and the rest of my academic activities to the field of myeloma.


Excellent. Thank you so much for joining us today. Let’s start with a question that’s on the mind of many of our audience members. We’re hearing that the COVID-19 vaccine is safe, but how effective is it for myeloma patients?

Dr. Fonseca:               

Thank you. I think that’s a fundamental question. It’s hard to know precisely how to gauge effectiveness when it comes to vaccination because historically, we know that is done by measuring antibodies and there’s a number of publications that are addressing this.

The concern has been two-fold. One is that because the disease itself is something that starts from the person’s immune cells become cancerous, that perhaps that would prevent them from having a very good response. Number two, and perhaps more importantly, will the treatments that are used for myeloma, etc. or lymphoma, can they interfere with our ability to mount an effective immune response? I think the response is mixed right now. I think I tell all my patients the upside is much better than the downside. I think we have a good record now of the safety of this product. I encourage everyone to get their vaccination.

I think it’s important to discuss this with your healthcare provider because sometimes people say, “Should I stop a little bit so that I can get a better response?” While it’s theoretically possible, we don’t want people to stop treatment if they don’t have to do that. Just my very last quick comment, the good news is that the community transmission is clearly going down as more and more people have participated in the vaccination.

We have more people who now have participated in this level of immunity that we have in the community. Hopefully, for patients as well as for their families, the risk of contracting this will continue to decrease.


Yeah. We can only hope. Well, let’s learn a little bit more about the disease itself. Dr. Fonseca, to level set with our audience, can you help us understand myeloma?

Dr. Fonseca:               

I’m happy to do so. Multiple myeloma is a cancer form of the bone marrow that arises when the cells that under normal circumstances protect us by the formation of antibodies. These are called the plasma cells. They become malignant. Myeloma is the last stage of a process where a plasma cell can go through a benign tumor or benign phase, if you may, something we call the monoclonal gammopathy, which by the way is quite common. About two percent of people over the age of 50 have this abnormality. Think of it like the colon polyp, a precursor condition.

There’s an intermediate stage that we call smoldering multiple myeloma, which is just more growth, but not quite at the level that it creates problems for the individual.

Then lastly, what we just simply call multiple myeloma, and that is when the growth of those cells becomes of such magnitude that a person starts having problems or starts having symptoms related to that. These cells live predominantly inside the bones in the space we call the bone marrow. They can do a number of things that actually lead to the symptoms and to the clinical presentation. As they grow in the bone marrow, they take some of that real estate.

A person may experience fatigue and that is because they have anemia.

The myeloma cells are also very characteristic because they can erode into the structure of bones, so destruction of bone is another feature that we see in patients with myeloma. That can be either seen on x-rays or sometimes people will present with symptoms related to bone pain or discomfort with movement or weight bearing. Those are signs that we look for.

Lastly, the myeloma cells product proteins and some of the fragments of those proteins can be damaging to the kidneys. Occasionally, people will present with decreased kidney function and sometimes outright failure of the kidneys. Those are the common presentations. It is a disease that mostly affects people in their 70s. It is not something that you can detect through routine testing; it’s just indirectly we start seeing abnormalities and then we do the right testing. If anyone is hearing this, of course, they need to have a detailed discussion with their own provider.


Of course, yeah. When a person is diagnosed with myeloma, they usually have a whole healthcare team. Who is typically on that team?

Dr. Fonseca:               

Absolutely. Let me start by saying the key to the successful management of myeloma is to have a well-organized team. It’s a disease that requires an integrated approach that usually brings around the patient a physician.

As part of my team, we also have advanced practice providers. We work with nurse practitioners that help us do the longitudinal care of patients. We have the nursing team. Every time I meet a new patient, I make it a point to bring my nursing team into the room so they can put a name and a face together, as patients will be interacting, of course, with a nursing team through the portal and the various visits. We have a team that is in charge of the chemotherapy administration. That is usually a separate a nursing team that is in charge of the administration of the medications. But we really don’t stop there.

We have pharmacists who help us review the medications for our patients. Very importantly, we have social workers that help us address psychosocial needs, as well as some of the practicalities that become inevitable when one deals with a serious diagnosis like multiple myeloma.


Yeah. Lately, we’ve been hearing this term, “shared decision making,” which basically means that patients and clinicians collaborate to make healthcare decisions, and it can help patients to take a more active role in their care.

I’d like to get your thoughts, Dr. Fonseca, on how best to make this process work.

Dr. Fonseca:               

We are very fortunate to live in this time of medicine, where ultimately, we recognize that the patient is the person expert. It is the patient decisions that should drive what is to be done in a situation. Whenever I interact with patients, I tell them, “Listen, I’m going to be like your counselor. I will provide you with options of what I think is reasonable. I will go to different degrees of effort in trying to convince you one way or another for a particular intervention. But at the end of the day, I only do a good job if I present you with the options and the pros and cons of those various approaches.”

I weave that into my language on every single conversation we have with patients. I think we’re way past the time where a physician would come and say, “This is what you’re going to do,” or “This is what will happen.” My language always includes, “I would recommend this.”

“I think the next best step for you to consider would be X, Y, or Z.” But ultimately, I look at patients and not infrequently at the person next to them, a family member or a close friend, and I say, “You’re the boss and with the person next to you providing additional support, comment, and guidance, we can together reach the best decision of what should proceed.” I think we’re incredibly fortunate because patients have access to sophisticated information, especially patients that have serious conditions such as would be cancer and, in my case, myeloma.

As an example, when I work with general internal medicine residents that work with me learning about hematology, I sometimes tell them, “You’re gonna walk into a room. Are you gonna be seeing what I say, this is like a tennis match between professionals. Are you gonna see the level of questions that patients are going to be asking me? They’re going to be asking me about the latest study that was presented at this meeting and the P value and this and that.”

“I can guarantee you that you would not have the tools to be able to address all those questions, simply because there’s such an in-depth understanding of the disease.” I realize this is not everyone. I’m giving you an extreme example. There are individuals that need additional support, more resources. But just to interact with someone who has such commitment to understand their disease and to help us by that understanding make the right decision makes my job so much more rewarding.


What do you think is the role of a patient then in their care?

Dr. Fonseca:               

I think it needs to be … I’m describing in some detail and there’s a lot to unpack there. Of course, patients are dealing with a very serious diagnosis. It’s okay to have periods where they are in a pause moment and they’re reflecting of what their facing, and that they can gather information from close family members.

I think we, as providers and the medical team, need to deliver a message that provides clear options for them as far as what the best next phase of their treatment or their management might be, including observations or supportive care. But the patient ultimately is a person who has to make that decision. I frequently get the question, and this is not surprising, and it happens all the time. A patient tells me, “What would you do if this was a family member?” I always tell them, “I always talk to you as if you were my family member, as if you were my brother, my mother, my father.

So, I try to live deeply to that fiduciary responsibility I have to your well-being. I recognize that there are circumstances, and that’s part of the finesse and the art of medicine, that I have to help a little bit more walk you through that step. Sometimes, it’s just human that one may want to say, I just want to disconnect. Maybe I’m not the person that wants to go and read in detail. But perhaps I have my daughter or my son who are helping me and understand better where things are.”

I think one of the key aspects of my role is to make sure that I have a sense that the person has a good understanding to be able to make an informed decision. At the end of it all, if the person decides to proceed in such way that doesn’t necessarily align with what I’m trying to do, I’m deeply respectful of that choice. I will go to extra lengths. So, if someone is foregoing treatment, when I know their treatment has a high likelihood of improving their quality of life, relieve a symptom, or improve survival, I don’t think I would do a good job if I don’t present why that’s so important. But ultimately, it is the patient’s decision.


Related to what you’ve just been speaking about, we have a question from the audience. This one is from Sarah. Her question is, “What advice do you have for caregivers? How can I be supportive during appointments?”

Dr. Fonseca:               

That’s a great question.

I have experienced this both as a physician, as well as a caregiver myself to someone who has had a cancer. I think I’m gonna say that there are several roles that caregivers play. Some of them are obvious and I’m gonna call them practical or perhaps even pedestrian, you know, organizing the activities of every day. That’s important, but a lot of people can do that. The second role is to be in assistance for the knowledge that is needed for some of this decision making. Sometimes patients can be overwhelmed, and we need some support and some vetting and peer process from a trusted and loved person so you can go through that.

That is very helpful, but what is essential, and the number one thing is you are first and foremost the loving family member or friend of that individual who is living through a very profound human experience. I think the first role of a caregiver has to be to express that role.

I, myself, reflect on moments where perhaps in a quick, reactive way I wanted to solve some of the immediate practicalities and what was needed most was a direct support. Even if I face a situation today, if I was, again, a caregiver for someone with a serious diagnosis with cancer, I would start with that priority. Number one, you are the support and the loving person. Number two is I will try to provide information. And number three, hopefully you can help with meals and the driving and what have you. But there’s many more people who can come and help in that regard. Not a lot can do the first part.


Right, absolutely. Yeah, those are excellent points. Let’s talk about treatment goals. What are the goals of myeloma treatment from a clinical perspective?

Dr. Fonseca:               

I’ve been very fortunate, also, to live through this era when we have seen a plethora of studies and new drugs being approved for the treatment of myeloma.

When I first started, I used to say no one wanted to do myeloma because we didn’t have good treatments. People wanted to study leukemia, lymphoma. It just turns out that this is probably one of the most vibrant areas of hematology from a science and from a clinical research perspective, of course. If I see young patients who have multiple myeloma, I have essentially two goals. The first one is to induce the deepest possible response I can do so in a safe manner. I also repeat, “in a safe manner.” But I really have the goal to try to induce the deepest response possible because that has translated and continues to translate, and in many ways proven to be associated with an improvement on their longevity and the time we can control the disease.

And it leads me to second goal, and that is that I firmly believe there is a subset of myeloma patients that are cured from their disease.

Now, this is possible because of the availability of these new treatments. I will only be able to say that in 10 and 15 years from now, when we have monitored patients for a long period of time, and we have been able to see that became true. But by all indicators, we have patients that are living many, many years without the disease coming back. I think that would be important. Now, we have patients that with more advanced age sometimes it’s difficult to propose some of the most intense form of treatments like stem-cell transplants.

We don’t do a lot of that in individuals over the age of 72 just because the toll that it takes on a person is very high, and the risks become higher. But still, in that population, providing the best treatment possible becomes a goal because I think more and more, we’re seeing patients in that age category that can start to get close to what normal life expectancy would be. It’s not there. It’s not perfect, but you start to get close. Lastly, if someone asked me, I have that balance between quantity and quality, the good news in myeloma, if you do it right, quantity and quality go hand in hand.

So, effective treatment provides symptom relief and provides durability of responses.


That’s excellent. What other factors do you consider when determining a treatment approach?

Dr. Fonseca:               

The human experience that comes to the bedside as we consider treatments is so multi-factorial and multi-complex that all that needs to be brought into consideration. Whenever I walk into the room, I tell residents usually the medical part can be resolved pretty quick, but we’re reading how much we can communicate? What’s the level of understanding? What do I understand about the support system for this person? Is there someone who can drive to the treatment center? Is there someone perhaps whose other medical conditions would create certain challenges in how they’re gonna be treated?

This person is telling me they do daily hikes for four miles. Well, that’s different from someone who I see comes into the clinic and has to use a cane. We try to integrate all of that information to make the right decisions. I’ve made a lot of my career in the early years working and showing how, for instance, genetic factors are important. I’ve come to realize later in my career and through some of the very elegant work that other colleagues have done, that these factors are just as important in determining the ultimate outcome of patients. Whenever I talk about that clinical experience, there’s two things I always tell the residents.

I use the residents a lot because I think it’s a good example of how we aspire to interact with patients. Number one is every single encounter is a final exam. You have to put your best foot forward. Every single encounter should be considered a final exam. Number two is when I walk into that room, there are three things I do, particularly the first time I meet a person.

Number one is connect, right? We cannot have a conversation and I’m not gonna be able to move forward unless we have a human connection and I have gained the trust of the patient and the family members that are there. That’s number one. The second point is decide. That is usually okay, we’re gonna do this treatment or that. That is a small part. Most of the time for me, that’s a very small fraction of the time and of the mental energy that I consume. There’s cases that are more complicated, but most of the time it’s pretty straightforward. So, it’s connect, decide do very small, and then on the other end is explain.

So, that’s how I can connect. I propose we do this, and then why we are gonna do it and what can you expect. If you can do those three things, I think that goes a long way in establishing a fruitful and a productive relationship with a patient and their families.


I would suspect that you also take into consideration the patient’s health, their age, maybe test results, side effects, things like that?   

Dr. Fonseca:               

Of course. So, we look at the medical record and with the advent, of course, of the electronic record and all the tests that we do, our consideration is quite complex. We have to look at all those factors, and the age, and comorbidities. It’s rare that we would take one factor alone that would trump everything else. We usually have to integrate the information. The same is true when we manage myeloma patients and we’re monitoring their protein levels and their response to treatment. I tell patients, they ask me, “What would you do? What’s the magic number for this or that?”

I say, “It’s a little bit like you’re flying a Cessna plane and you have all these dials in your dashboard, and that’s how we manage the situation is the integration of all of that information.”


Right. Can you help us understand, Dr. Fonseca, how test results may affect treatment options?

Dr. Fonseca:               

Sure. Happy to do that. In myeloma, we are very fortunate in that we have, and it’s not the topic for today, but we have the best biomarker that exists for any cancer. That is that we can measure the proteins that are associated with the growth of the cells. We have multiple tests that we can do. We do them in the blood and we do them in the urine. They’re simple tests that have been done for decades now that allow us to monitor how a person is doing with regards to their disease. I use the following analogy. Myeloma cells live inside the bones, as I mentioned, in the bone marrow.

They don’t come out into the blood. So, we cannot measure them. Indirectly, we can measure how many they are and how they are behaving by measuring this protein. I use an analogy of imagine you’re walking in a street, and you see smoke coming out of a building. There are two things you can do. First is you diagnose that there is a fire inside the building, right? We see that with myeloma by measuring these abnormal proteins.

Then as a firefighting team comes on, you can gauge whether they’re making progress or not by the amount of smoke that comes out. That’s exactly what we do when we monitor myeloma. We monitor the M-Spike, the serum free light chain, the urinary proteins. That’s how we make those determinations.

At the same time, we do that, we have to look indirectly at the rest of the body. We have to look at the kidney function. We have to look at the blood counts. We have to look at the hemoglobin and the red cell count because that can (A) start on the wrong foot because of the myeloma itself, but (B) can also suffer as a consequence of our treatment.

It is, again, that idea of having the multiple dials in the dashboard that allow us to reach our practice. We have to be adjusting. So, if we measure the proteins and we’re doing great, but then at the same time we see we’re suffering in blood counts, and we may need to adjust those as we provide supportive treatment. If we don’t see the proteins go down, then that may mean we need to change to a different form of treatment or that the person is unfortunately a refractory or relapsing to something.

So, that’s how we integrate the test results into our management.


What sort of questions should patients consider asking about their treatment plan?

Dr. Fonseca:               

I think it’s important that patients understand a few things. They can be described in multiple ways. Number one is, of course, what? What is it that is being used? I think that includes a description of what to expect, the practicalities, the names of the medications, their side effect profile, and what to report when you use those medicines. I think that’s very important because if you’re empowered with that information, you’re gonna be better off as you react for symptoms that may come along. I always tell patients when you have a cancer diagnosis, your self-awareness goes through the roof because we’re gonna be paying attention to everything, every skin change, every pain we have.

So, I think having a bit of that proactive discussion becomes important as they think about the treatments that they want. I think the how-to on the practicalities are very important. The best where the nursing team and the pharmacists help us a lot too. Do you take the medicines at night? Do you take them with meals? Is there something that you shouldn’t be mixing? How much time would it take for me to get a refill? It’s different to get a medication from a specialty pharmacy versus your down-the-street Walgreens. So, all of those things are important that patients, again, participate in the understanding.

If not them, at least the caregivers that are a part of this team. I think it’s important that patients ask also some brief descriptions of (A) the biology of the disease. If I have myeloma, what type of myeloma do I have? Does that matter as far as what treatments I’m going to be using? What treatment options may be available to me because of my specific subtype? We have subsets of myeloma that have options that are not available to others.

Also, I think it’s important that patients also ask a sense from the physicians as to where they are. I’d like to describe this a little bit more. Sometimes, patients ask us specific questions about, am I in a complete response? Am I in a very good partial response? What is a PFS? Those terms work very well when we talk about clinical trials, but they don’t necessarily describe in a great way the situation for an individual patient. I’d use a lot more objectives than I’d use technical terms when I describe where patients are. I say, “You have an excellent response. You have a very deep response.”

Then I’d provide more details if they want. “Yes, you’re MRD-negative at 10 to the -6.” But sometimes I find that it’s harder for patients to understand where they are if they completely focus on the staging system or the response criteria, etc. Because maybe a VGPR, a very good partial response, doesn’t sound very good.

But then you can be in a very good partial response for 15 years and it doesn’t matter. You my want to be in an MRD-negative status, but you still have a good outcome. That’s why the general description of the status by a physician becomes important.


Do you think patients should get a second opinion consult with a specialist?

Dr. Fonseca:               

In general, my answer is going to be yes. This is not self-serving. I think myeloma has become so complex that trying to integrate at least once, or if not, in some infrequent basis, an opinion of a myeloma specialist becomes important. This is no one’s fault. If you’re a community oncologist somewhere where myeloma represents only a small fraction of your practice, I can guarantee you, you cannot stay on top of the literature. I cannot stay up with everything that goes on with myeloma, even though that’s what I do 100% of the time.

I get an email every week with all the articles, all the publications, and I have to integrate that. I have to think, okay, does this matter or not? I go to the professional meetings. I see all the abstracts and I still feel like I’m missing out. How could you do that if that is only a small fraction of your practice? I’m sure that the same applies for other cancers, breast and colon. You can’t move. You cannot uproot yourself and leave your community and your family, but I think there should be ways by which patients at least have an opinion from someone who has more expertise. Fortunately, there are many centers across the nation now that have that expertise for the management of myeloma.


Dr. Fonseca, we have a question from a newly diagnosed myeloma patient. Barbara says, “I am just about to begin my first myeloma treatment. What can I expect?”

Dr. Fonseca:

Thank you, Barbara, for the question. I think if you start on treatment, first of all I hope they already went through a good description of what the treatments are, the frequency by which you’re gonna have to go to the center, and also what are the toxicities to look out for.

One of the most common toxicities that we face and one of the most challenging parts of initial treatment is the use of steroids. So, we use dexamethasone as part of every single regimen we use for myeloma. I tell patients, “Dexamethasone is a simple drug at first glance, but it’s oftentimes the most complicated part of treatment.”

The human brain works at triple speed when you’re on dexamethasone. So, it’s hard to sometimes be able to sleep properly. People can become anxious and even the sweetest person in the world can become a little bit edgy on dexamethasone.

I always say Mother Teresa on dexamethasone would be an edgy person. Just be patient. Work with the team. Just know that on the other side of treatment there is a return to normal life.

Our goal as we embark on treatments and, for instance, is I see patients that are going to go through transplant, I tell them, “Our goal is you finish, you recover, and you go back to your life. You back to work. You go back to your family, your kids, your sports.” That’s really what we strive for when we treat patients with myeloma.  


Yeah. Once on therapy, how is the disease monitored and how do you know if the treatment is working?

Dr. Fonseca:               

Well, fortunately, we use the same markers. Once a person is in therapy, we will be monitoring. We monitor at least on a monthly basis of those myeloma protein markers. Once a person reaches a great level of response, sometimes we complement that with an analysis of the bone marrow. Of course, it’s more invasive, so we don’t like to do a lot of them, but we do them as needed. As we go forward and monitor patients, we will be looking for signs that those proteins remain in a low level as stable as an indicator that the disease is under control.

Now, if I saw someone and then I start seeing that there’s an increased concentration of those proteins or we see something else clinical, we might need to do a little bit of a regrouping and test again in great detail to determine if the person is experiencing regrowth and the disease is so-called relapsed.           


Why is it so important for patients to speak up when it comes to symptoms or treatment side effects?

Dr. Fonseca:               

Well, that’s a great question. If you don’t speak about them, we don’t know about them. It seems very obvious, but then we cannot make the proper adjustments. I’ll give you a couple of examples. I already talked about dexamethasone, but a common drug we use is something called bortezomib. Bortezomib is a proteasome inhibitor.

That’s a mouthful, but it’s one of the key type of drugs we use. It’s given as an injection under the skin. Not to be confused, by the way, with daratumumab. Faspro is the name of that medication, so not to be confused with that is bortezomib, which we have been using for many years.

Bortezomib has a potential toxicity that is called peripheral neuropathy. If patients have peripheral neuropathy, that can go from very mild where you have some numbness and tingling, to the more extreme cases that it’s associated with pain, discomfort, even weakness and disability.

Well, if we don’t know that’s happening, then we can’t react to it and we can’t adjust doses or switch to something different altogether. You can imagine now we have more options, but in the old days, I always tell patients, “You might be tempted not to say anything about this because you might be thinking, boy, this is working. I don’t want to interfere with my treatment. I can live with the peripheral neuropathy.” But if it gets worse, despite the fact that the treatment is working, the person might have a very significant impingement on their quality of life.

More so now that we have so many alternatives, it’s important not to get us into a path that we might reach a point of an irreversible chronic complication from treatment.


No, and that would be awful.

Dr. Fonseca:               



Before we end the program, Dr. Fonseca, have there been any recent developments in myeloma treatment in research that make you hopeful? 

Dr. Fonseca:               

Absolutely. I would say that the one area of work that makes me most hopeful is what we’re seeing with immunotherapy. We have seen that both as the ASH meeting, as well as the ASCO meeting in this year, where people are presenting updates with the various clinical trials with either bi-specific antibodies or CAR T cell therapy as a new avenue for the treatment of myeloma.

In fact, at the last ASH meeting, we had 14 presentations of different compounds or different constructs that are active. I think the future is bright in that regard. We’re seeing their application right now. A lot of these updates have also been made as ASCO.

We’re seeing the update of the treatment of treatments with fairly advanced and aggressive disease where we can still show very significant responses. I participate in some of these trials. I can tell you in my institution, using some of the bi-specifics, I see patients who have previously exhausted all of their options and now are MRD negative at 10 to the -6.

If we’re seeing that in the very advanced disease, I cannot wait to see what happens when we start using these treatments in either early relapse and why not in the near future as frontline part of our therapy? I think to me, that whole field of T-cell engagers, where there’s bi-specifics or the CAR T cells remains one of the most exciting areas for future research.


How can patients stay up to date on information like this?

Dr. Fonseca:               

I think what we alluded to before is very important to work with groups like yours and other patient support organizations that can keep them up to date. I think they’re doing a very good job at also providing updates post some of the large meetings. I know there’s a lot of patients out there that are very sophisticated that will even join the medical meetings. That happens with some frequency; that they want to learn, and patients that go and ask me details about the statistics of the trial. That’s a whole spectrum, right?

But at the minimum, I would say a strong connection with a support group, or a patient support organization becomes an imperative as you deal with this. Also, that would help you because with this whole concept of the information not always being complete and truthful, that can be scary as well, too.

If someone goes and just looks for, I would say even some of the resources that are out there in a textbook today, just keep in mind that textbook was probably written five years ago, and it represents the studies of about 10 or 15 years ago. How that relates to you, it’s very distant. So, it is because of this continuous process of research that we know better what’s going on at the present time.


Dr. Fonseca, thank you so much for taking the time to join us today.

Dr. Fonseca:               

Oh, it’s my pleasure. Thank you for the opportunity.


And thank you to all of our partners. To learn more about myeloma, and to access tools to help you become a proactive patient, visit I’m Katherine Banwell. Thanks for joining us.

Meet Jack Aiello: Myeloma Survivor and PEN Board Member

In this podcast, Jack Aiello, myeloma survivor and Patient Empowerment Network (PEN) board member, shares his myeloma story. Having been diagnosed with myeloma more than 20 years ago, Jack share his perspective as an advocate and his optimism about the future of myeloma care.

About the Guest:
Jack Aiello is a multiple myeloma survivor and patient advocate. Jack is involved with a number of advocacy organizations around the country, including serving on the Board of Directors for the Patient Empowerment Network. Learn more about Jack here:

Is the COVID-19 Vaccine Safe for Myeloma Patients?

Is the COVID-19 Vaccine Safe for Myeloma Patients? from Patient Empowerment Network on Vimeo.

 Should myeloma patients get the COVID-19 Vaccine? Dr. Joshua Richter encourages all patients to get the vaccine but notes important considerations around treatment.

Dr. Joshua Richter is director of Multiple Myeloma at the Blavatnik Family – Chelsea Medical Center at Mount Sinai. He also serves as Assistant Professor of Medicine in The Tisch Cancer Institute, Division of Hematology and Medical Oncology. Learn more about Dr. Richter, here.

See More From Engage Myeloma

Related Programs:

Myeloma Treatment Decisions: What Should Be Considered?

What Standard Testing Follows a Myeloma Diagnosis?

An Expert’s Take on Promising Myeloma Treatment and Research



Is the COVID-19 vaccine safe for patients with myeloma?

Dr. Richter:

Absolutely, 100 percent yes. Everybody with myeloma should absolutely get the vaccine. What’s a little more complicated is the timing of it. So, one is in relation to stem cell transplant or CAR T-cell therapy. If you’ve had one of these, obviously, consult with your provider. But the general recommendation is to wait about 60 to 90 days after a high-dose therapy like that. And it’s not a question of safety, it’s a question of efficacy. Vaccines are like vegetables, seeds, you have to put them in the ground to grow. If you give yourself a vaccine right after a stem cell transplant, well, your bone marrow is not ready to work with it. It’s like planting a seed in the desert.

You want to make sure your immune system can take in that vaccine and give you immunity. So, you have to wait at least 60 to 90 days. The other question is, what happens if you’re getting continual therapy? And we don’t know the answer for most of these drugs, but one of the things is dexamethasone (Decadron), which is a steroid. Almost all myeloma therapy comes with some steroids. And we like to separate the vaccine from the steroid dose by a little bit if we can. Again, always important to talk with your care team as to risk/benefit about holding certain treatments.

A New Phase: Bruce Jackson

Bruce Jackson is a multiple myeloma patient who recently found Patient Empowerment Network (PEN) as a resource for his cancer journey. This is the first of two-part series in which he shares his story from diagnosis to living his life with cancer.

“You can do nothing, or you can do something…maybe it is simply advocating for yourself or advocating on behalf of someone else.”

I guess I haven’t thought of my cancer experience as a story, and yet, that is exactly what it is: a story about a new phase in my life. I have multiple myeloma. More specifically, it is a t(4-14) translocation wherein the 4th and 14th chromosome pairs, instead of minding their own respective business, decided to share their genetic information, and that sharing process is at the basis of the disease. I don’t know if researchers yet know the cause of these translocations; some say that they result from a virus, but I know very little more than that. My 4-14 translocation is deemed a moderately aggressive cancer, but there are other much more aggressive translocations which are functionally a one-year death sentence.

I was diagnosed in May 2009. I was 53 at the time and am now 64. In my case, I was seeing my primary care physician (PCP) every six months for treatment of high cholesterol. She was treating me with a statin drug, and she insisted on doing blood work every six months. The blood work revealed an elevated total protein level, and my PCP suspected cancer, so she sent me to an oncologist who confirmed the diagnosis of smoldering myeloma.

I think there are a couple of points to be made here. One, because of the blood panels every six months, my cancer was caught early. Two, while a smoldering myeloma diagnosis may seem relatively benign, it is not. The question is, when does it morph into something else, into what does it morph, and what do you do in the meantime?

For me, this meant tracking the disease through occasional (every six months) to more frequent (every three months) blood tests to track my M protein value, which is a pretty highly correlated indicator of what is happening in the bone marrow. On a lesser frequency, I would have a bone marrow biopsy, just to see whether what was happening in my blood stream still continued to correlate with what was happening in my bone marrow. When my M protein value was around 0.8, I started to see an oncologist regarding what was initially diagnosed as monoclonal gammopathy of otherwise unspecified origin (MGUS). Then in October 2014, my oncologist was citing M protein values of 3.6, but with no other symptomatic phenomena to address, except that an MRI had shown some very small unidentifiable spots on a few of my ribs and on my sternum. The MRI report suggested that I have a re-do in six months, and that is what happened, except I was now in the hands of a myeloma specialist, and she suggested that we re-test using a CT Scan. The scan revealed growth in the spots, enough so that we were now using the term “lesions”, which was the tipping point to starting treatment.

I started my treatment program as a part of a Dana Farber Cancer Institute study, which required a prescribed regimen of Velkade (a subcutaneous injection), coupled with Revlimid (Thalidomide derivative and sister drug to Pomalyst), and Dexamethasone (a common oral steroid, which generates a synergistic effect that aids in combatting the cancer). In my first cycle, the treatment knocked my M protein value down to less than 1.0. However, in the second round, the treatment induced some unplanned side effects, all at the same time. I experienced blood clots in my lower legs, an obstruction in my digestive tract, pulmonary emboli in my lungs, a half-collapsed lung, a respiratory infection, and a massive headache. This earned me a 10-day stint in the hospital, a paranoid reaction to one of the drugs that I was given, and removal from the Dana Farber study.

Unfortunately, the respiratory infection would not go away, and only six weeks later, it was determined that I needed to have a procedure done, wherein the surgeon puts three holes through my rib cage and inside my pleural cavity with the goal of removing scar tissue from the surface of my right lung so that the medication could reach and eliminate the infection. The procedure earned me 12 more days in the hospital.

The good news is I made it through both events, and I am here to share about it!

It was determined that the Dana Farber dosage was too much for my system, so the solution was to cut the dosage back to about two thirds, and then administer more rounds. My rounds of chemo ultimately led to a stem cell transplant in September 2015. The stem cell transplant was a 21-day hospital stint (which is a typical duration), but as can happen, things didn’t automatically jump-start as expected. After my transplant, everything was jump-starting except my platelets. Fortunately, it seems there is always an alternate plan of attack, and the hematologists were able to prescribe a three-day dose of medication that on day three bumped my platelet count from two to four, and I was on my way. Plan B worked, and I’m glad we did not have to go to Plan C, because I don’t know if there was a Plan C. There were other hiccups along the way. I started having blood clots in my lower legs again, and developed pre-ventricular contractions (PVCs), which feel like a skipped beat, but are actually extra beats, and amount to an arrhythmia of the heart.

After my stem cell transplant, I was given a prognosis of four to eight years, and I was only in partial remission. Once sufficiently recuperated, I had to take Velkade as chemo maintenance. However, because of the subsequent neuropathy, and associated deep venous thrombosis (DVT) in my lower legs, the decision after about two years was to switch to Revlimid. However, the truth of the matter is, your M protein does not stop increasing with the chemo maintenance. It simply increases at a slower rate, and if the drug stops working, problems arise. In my case, the Revlimid worked for another two years, but then things started to happen in 2020.

When the medication stops working, the problems that arise are one of two things: either the rate at which the M protein increases starts to accelerate, or your immune system loses the ability to adequately recover during the seven-day rest period. Your neutrophil (white blood cells) count drops due to the chemo, but if the counts do not climb back up, that means you have to take more days to recover, lower the chemo dosage, or get a booster shot to bump your neutrophils. Any of these options would, of course, allow the cancer to progress at a faster rate. In my case, the neutrophils were dropping and my M protein was climbing, which in essence means the chemo drug was no longer effectively slowing the progression of the disease. It was time to switch to another treatment.

I was given the option to investigate my choices, but because of the myriad options available, that turned into a whole bunch of, “I don’t know”. I finally settled on Daratumumab, Pomalyst and Dexamethasone, with Dara being subcutaneously injected (like Velkade was). Pomalyst is an oral Thalidomide-based sister drug of Revlimid, and Dex is well, Dex. Given that I am only just starting a third post-transplant treatment, I think I am doing well, especially if you consider that I am mid-way through my 12th year post-diagnosis and I am more than five years post-transplant that had an original prognosis of four to eight years.

When you consider where I have been, five years is good so far. I have not had any bones break, my cancer was caught early thanks to a competent PCP, I have only a moderately aggressive translocation, which is much better than more highly aggressive versions, which could have buried me in short order. But what bothers me most, regardless of all the other things that have happened during this experience, is the uncertainty of it all. I feel like I am always waiting for the other shoe to drop.

Learn the rest of Bruce’s story in part two of the two-part series in which he shares his story from diagnosis to living his life with cancer.

Read more patient stories here.

Checking the Pulse on Multiple Myeloma Health Disparities

Even before the coronavirus pandemic arrived, health and patient support organizations made resolute efforts to examine and address health inequities for multiple myeloma patients in Black, Indigenous, and People of Color (BIPOC) communities. Diverse Health Hub and the Patient Empowerment Network partnered to help improve health outcomes for underserved myeloma patients through the Diverse Partners in Your Myeloma Care program. With a tumultuous year filled with the killing of George Floyd, social unrest, and coronavirus health disparities for BIPOC groups, these issues prompted us to focus on where things stand with multiple myeloma health disparities. We’ll take a look at what we know, what we’ve learned, and what help and resources are needed to continue advancing care for BIPOC myeloma patients.

Disparity Facts About BIPOC Myeloma Patients

  • Both Black Americans and Latina and Latino Americans show a myeloma precursor called MGUS, or monoclonal gammopathy of undetermined significance, more frequently than others—.88 percent in Black Americans, .44 percent in Latina and Latino Americans, and .22 percent in white Americans.

  • Although multiple myeloma is diagnosed at a younger age in both Black Americans and Latina and Latino Americans, both groups are less likely to receive a transplant and start treatment later than patients of other races.

  • Black Americans are actually known to have less aggressive myeloma, which should show better health outcomes—yet that is not the case.

multiple myeloma diagnosis.png

Learnings About BIPOC Myeloma Patients

Black and other BIPOC patients often have mistrust of doctors and researchers due to past experiments like the Tuskegee Study and Henrietta Lacks – whose now infamous immortal HeLa cells were taken without her consent. “If I were to walk into any community, African American community, or underserved community, that is one of the first things. They’re going to be mistrustful of me. And it’s a very difficult barrier to overcome. And that also leads over into African Americans contributing, being donors, African Americans participating in trials. It all feeds over into everything that’s done in the African American community or underserved community in regards to healthcare,” says patient navigator Diahanna Vallentine.

Barriers to care must be overcome according to Dr. Sikander Ailawadhi from the Mayo Clinic, “Myeloma patients who are African-American and Hispanic typically get to the right treatment much later. In a lot of cases they may not get to the right treatment at all. We also know that the burden of cost of care is much higher for minority patients.”

Improvements are happening in care as explained by Dr. Ajay Nooka from Emory University School of Medicine, “What’s really interesting in this meeting is that there has been a lot of large database integrations, including one database called the National Cancer Database (NCBD) where people have looked at 20-year history of how these treatments have panned out. Which of the minority populations or which subset of patients gained the most benefit over the last 20 years? And we see minorities have gotten a lot of improvement and a lot of access to care over the last 20 years, but that’s not the end of the story, we have to catch up a lot more.”

The Path to Health Equity

Although the additional focus on health inequities has started to improve access to care, there is still a critical need to raise awareness about the treatment gaps for myeloma patients in BIPOC populations. How can myeloma patients get the best care no matter where they live when factors like age, geography, socioeconomic status, ethnicity, gender, and insurance type heavily influence the path to better health outcomes?

Some valuable steps that patients, community leaders, and healthcare providers can take to improve care include:

  • Support organizations providing educational materials to patients that are target specific BIPOC groups

  • Patients and advocates making the BIPOC voice heard by asking for funds from community and political leaders to improve care

  • Healthcare providers developing relationships and partnerships with political leaders and support organizations to continue building momentum in improving patient care

  • Patients taking advantage of social workers and patient navigators at their clinics and support organizations

  • Patients, advocates, and healthcare providers working to increase clinical trial participation

  • Healthcare providers integrating cultural competency as a universal approach in the healthcare model

Resources like myeloma patient resource guides, informational graphics, and the Myeloma Coach section on the Myeloma Crowd website provide valuable information for patients. And though trust of clinical trials by BIPOC populations remains an issue, there are initiatives like Diversity in Clinical Trials Benefits Everyone. BIPOC patients can take action working together with medical researchers to increase clinical trial participation to improve and refine myeloma treatment developments for specific patient populations. If you want to explore options in your treatment, seek out resources that embrace diversity in clinical trials. The “All of Us” program is a public health initiative designed to remove the barriers that prevent inclusive access.

Participating in clinical trials not only will improve myeloma treatments down the line but also provides a minimum of standard of care treatment at no cost to the patient. It’s a win-win for both the patient who participates in the study and  also helps the progression of treatment for BIPOC patients diagnosed with myeloma in the future. Though progress has been made, patients, advocates, community leaders, and healthcare providers must take action to continue an upward movement to achieve equitable care that BIPOC myeloma patients deserve. Take advantage of the resources below and continue to visit our Multiple Myeloma Hub as we publish more on health equity developments for multiple myeloma.

Resources to Learn About Improving Myeloma Health Disparities

Disparities Around Health Technology Access for Subset of Myeloma Patients

Good News for Myeloma Treatment Today – Still Addressing Race-Associated Risks

2020 Shaping Up to Be a Big Year for Multiple Myeloma Treatment

How Can a Myeloma Patient Advocate/Financial Advisor Help

Is It Possible to Achieve Health Equity in Multiple Myeloma?

Are Myeloma Clinical Trials More Critical for African Americans?

A Multiple Myeloma Advocate’s Uphill Battle to Care

What Do Disparities in Multiple Myeloma Look Like?

How a Second Opinion Saved a Myeloma Patient’s Life 

Myths vs. Facts: Myeloma Health Disparities Care Infographic

How Can I Get the Best Multiple Myeloma Care No Matter Where I Live? Resource Guide

Diversity in Clinical Trials Benefits Everyone


How Can a Myeloma Patient Advocate/Financial Advisor Help? Patient Empowerment Network website. Accessed October 19, 2020.

Cancer Survivors: Managing Emotions After Cancer Treatment

Since the 1980s, doctors have tried to describe the stages cancer survivors normally go through. Most divide them into a version of the three stages described below:

Acute Survival (Living With Cancer) – Covers cancer diagnosis and any subsequent treatment. During this time, patients will undergo treatment and may be invited to participate in a clinical trial to study new cancer treatments. Sometimes services are offered to patients and their caregivers to address emotional, psychological and financial problems.

Prolonged survival (transient cancer): Post-treatment period during which the risk of recurrence is relatively high. Many patients are relieved that treatment has ended, but are concerned that they will not visit the oncologist regularly. During this stage, patients often visit the oncologist two to four times a year, depending on their circumstances.

Permanent survival (living after cancer): survival after treatment and long-term. Although two out of three survivors declare that their lives have returned to normal, a third affirms that they continue to have physical, psychosocial or economic problems. During this stage, most survivors are cared for again by their GP. Ideally, they have developed a long-term follow-up plan with the oncologist for their regular doctor to implement.

Social and Emotional Repercussions of Cancer

In addition to the physical effects of cancer, survivors experience psychological, emotional, and spiritual consequences. Many of them affect quality of life and can manifest many years after treatment. Here are some of the most common problems cancer survivors face:

Fear of Recurrence

Many survivors live in fear that the cancer will return at some point. In some cases, a major event, such as the anniversary of the diagnosis or the end of treatment with the oncologist, can trigger these feelings. Fear can be good if it encourages you to discuss your health changes with your doctor, but it can also cause unnecessary worry. Knowing your own body will help you distinguish between normal changes and more serious symptoms.


Grief is the natural result of loss. In cancer, losses refer to health, sexual desire, fertility, and physical independence. To overcome your pain, it is important to experience all of these feelings. Support groups and psychological assistance can help you deal with these problems.


It is estimated that 70% of cancer survivors experience depression at some point. Depression can be difficult to diagnose in cancer survivors, since the symptoms are very similar to the side effects of cancer treatment, such as weight loss, tiredness, insomnia, and inability to concentrate. In a 10-year follow-up study, symptoms of depression have been found to be associated with shorter survival, so seeking treatment for depression is essential.

Body Image and Self-esteem

Cancer survivors who have suffered amputations, disfigurements, and loss of organs such as the colon or bladder often have to overcome their problems to relate to themselves and to others. A negative body image and low self-esteem can affect the survivor’s ability to maintain relationships with their partner, which will have important consequences on their quality of life. Good communication is essential to maintain or regain intimacy after cancer. Consult a doctor if problems persist.


Many survivors feel that life takes on new meaning after cancer and renew their commitment to certain spiritual practices or organized religion. Research indicates that spirituality improves quality of life through a strong social support network.

Survivor’s Fault

Some people feel guilty about surviving cancer when others don’t. You may be wondering “Why me?” Or reevaluate your goals and ambitions in life. If you have a prolonged feeling of guilt, a psychotherapist, a member of the clergy, or a support group can help you express your feelings.


Possibly the biggest challenge cancer survivors face is how others react to their disease. Friends, coworkers, and family members may feel uncomfortable when discussing the diagnosis of cancer. They can keep silent, avoid you, or pretend that nothing has happened. Others may use humor to try to distract you and not think about your situation, instead of offering to talk about your problems. Cancer can be a long-lasting disease, so it is essential to overcome communication barriers.

Social and Work Life

Social and professional reintegration can be accompanied by many fears: concern about being exposed to a higher risk of infection, lack of enough energy to reach the end of the workday and anxiety about not being able to think clearly due to the so-called “neurological impairment by chemotherapy “or memory loss. In overcoming a life and death situation, many cancer survivors feel alienated from people who have not had the same experience and turn to other survivors for support and friendship.

You may be reluctant to reveal to your bosses and colleagues that you are receiving cancer treatment for fear of being treated differently or even losing your job and health insurance. This creates an atmosphere of uncertainty that contributes to emotional stress. Again, honest communication with your colleagues will help you overcome these feelings.

About the author: Diane H. Wong is copywriter at write essay for me service. She is also a professional nutritionist and plans to start her own blog to share her knowledge with others.

What Does Remission Mean in Myeloma?

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

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

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

See More From The Pro-Active Myeloma Patient Toolkit

Related Resources


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


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

What is Personalized Medicine?


Dr. Peter Forsberg:

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

Fertility Preservation in People with Cancer

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

Connect with Myeloma Groups

This resource was originally published by Myeloma Crowd here.


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

CrowdCare Foundation
PO Box 1286
Draper, UT 84020




Resources For Survivors

This resource was originally published on Bone Marrow and Cancer Foundation here.

The Journey Continues

The Bone Marrow & Cancer Foundation’s Survivorship Program provides resources that can address the needs of all bone marrow, stem cell, and cord blood transplant survivors, their families, and caregivers. Our goal is to provide education and support for people coping with the physical and emotional challenges of transplantation. Web accessibility to many of these resources means that no matter if you are at home, at a treatment center, or staying in out-patient lodging immediately following discharge, you are not alone; the survivor community is at your fingertips. The website will be an interactive community that serves as a meeting place and a shared resource for those who have survived a transplant and their families.

Transplant survivors tell us that while they felt well-prepared for transplant, many were very isolated in the days, weeks, and even months following transplant. The return to “normal” life takes a different path for each person; yet the shared common experiences can provide significant support and encouragement during the process. The Bone Marrow & Cancer Foundation’s Survivorship Program will address the ongoing need for emotional and social support, provide education about transplant and side effect related issues, host online discussion forums about social, physical, and psychological concerns, and help you create a healthy new life.

Survivor Telephone Support Group

Survivor Telephone Support Group staffed by oncology social workers, provides bone marrow, stem cell and cord blood transplant survivors with a weekly scheduled telephone conference support group to share experiences and draw support from others. For patients one year or more post-transplant. For more information or to register, contact the Bone Marrow & Cancer Foundation at or 1-800-365-1336.

Resources for Patients and Families

The Foundation offers several programs, such as Ask the Expert and SupportLine to help patients and their families make the connections they need and resources to find information to help allay their fears and better understand the challenges they face.