• Myeloma Crowd Radio Episodes
    • Nov 06, 2018

    Full Show: Racial Disparities in Multiple Myeloma with Ashraf Badros, MD, University of Maryland

Ashraf Badros, MD
University of Maryland
Interview Date: October 3, 2018

Thanks to our episode sponsor, Celgene Corporation.

Summary

African Americans are more than twice as likely to develop multiple myeloma. But they are not getting the longest life possible for a variety of reasons. How can they obtain better outcomes and live longer with multiple myeloma? Dr. Badros shares his insights and research of multiple myeloma for the black community. With earlier referrals to myeloma specialists, earlier transplant and better study of this group and more clinical trial participation, the care could be improved to help lengthen life. 

Jenny: Welcome to Myeloma Crowd Radio, a show linking patients with myeloma researchers. We’d like to thank our episode sponsors, Celgene Corporation for their support of the Myeloma Crowd Radio Program.

Now, we’re excited about our show today. Before we get started with that, we’d like to share an update on our HealthTree product. We are still on our 50-city tour. We’ve been to 47 cities now (now over 50) and we have over 700 (now 1900) patients using this tool that provide three key benefits to myeloma patients. First, it helps you understand personally relevant treatment options at every stage of disease, so whether you’re newly diagnosed or relapsed. The system can help you understand what options might be available that you can discuss with your doctor.

Number two, it helps you find clinical trials that you’re eligible to join that are personally relevant as well. Three, it helps you find other patients that look like you with our reporting that’s coming out. Importantly, we’re a few days away from providing the ability to automatically upload your labs through our partnership with Apple using our HealthTree Connect app. We’re currently working on the researcher portal to provide both myeloma researchers and patients with reporting capability on anonymous data, so we can share our myeloma stories. If you would like to join and share your myeloma story, you can go to www.healthtree.org and create an account.

Our Myeloma Crowd show today is an important topic to many patients. Rather than focusing on a specific clinical trial, our topic is more broad in discussing African Americans and myeloma. We realize that this is such a big community. They are twice as likely to get myeloma as white Americans. The Myeloma Crowd have started to develop programs specifically for this group. In the African American community, we now have a specific Facebook group that you are welcome to join. We also have a program called Myeloma Meetups for the African American community to discuss specific topics and in fact have one in Louisville coming up this Saturday (past). So we invite you to join those and take a look at the website to find those.

We have with us today, our guest is Dr. Ashraf Badros. Dr. Badros has a long interest in the study of racial disparities in myeloma. More than half of his patients are African American. Before I get to his formal introduction, I’d like to add that Dr. Badros has spoken at two of our Myeloma Crowd roundtables. His style is a very big hit with our patient audiences. Dr. Badros, welcome to the show and thank you for joining us on Myeloma Crowd Radio.

Dr. Badros: Thank you, Jenny. It’s a pleasure to be here. Thank you.

Jenny: Well, let me give you a proper introduction for you first. Dr. Badros is the director of the Multiple Myeloma Service and Professor of Medicine at the University of Maryland’s Greenebaum Cancer Center in Baltimore. He’s a native of Egypt who’s completed his fellowship at George Washington University in Roswell Park. In addition to his research and clinical practice, Dr. Badros is the author of hundreds of myeloma publications. He also reviews hematology articles from publications like the New England Journal of Medicine, Lancet, Blood, Journal of Clinical Oncology and many, many others. He also teaches plasma cells disorders at Tristan Medical School and helps fellows with their research and with their research rotations.

His awards include being in the top 1% in medical school, an excellence in clinical medicine award, being in the top 1% of published authors in the field of hematology, a humanitarian of the year award at the Mildred Mindell Cancer Foundation, a teacher of the year award in the Department of Medicine, and a clinical publication of the year award in the Department of Medicine. Dr. Badros has led and collaborated on numerous studies examining disparities between African American and Caucasian patients in autologous stem cell transplant, cytogenetic abnormalities and outcomes and we’ll touch on those studies in today’s discussion.

Remember, if you have questions you’d like to ask Dr. Badros, you can call 347-637-2631 and press one on your keypad. Dr. Badros, let’s have you give a broad overview first. And please answer a blunt question, why should we care about myeloma in African Americans if we’re not African American?

Dr. Badros: First, thank you for the excellent introduction. I hope I can meet the expectations of such a presentation. You correctly mentioned that African Americans are twice as likely to get multiple myeloma as Caucasians. Before I continue, I’d like to mention, it’s not just African American. It’s actually the black race. People in Africa, in South America do have higher incidence of multiple myeloma, not just African American.

If you look at the African American particularly which is our talk today, they represent about 10% of the US population approximately. About 20% of the people living today with multiple myeloma are African Americans. A big problem we are having, and I think we all need to be conscious of, is the participation in clinical trials. We actually do not have enough African American in our clinical trials. That probably will be discussed in more details later.

More importantly, as a physician, I think the understanding of genomics between different populations is really a growing field and help us understand tumor biology. I’m trying to understand why a disease is more common in a specific population might help us understand the pathogenesis of multiple myeloma. I think as a society, for African Americans we need to focus on their needs, on their expectations and hopefully overcome the barriers that prevent access to care overall.

Jenny: Yes, absolutely. We want to make sure everyone has the same access and the same excellent care especially from myeloma specialists like yourself. Another question would be why should African Americans who are not affected by myeloma care about myeloma? Because I know there is a lot more outreach now to black churches and things like that to raise awareness about multiple myeloma in a black population.

Dr. Badros: I mentioned multiple myeloma in general is proceeded by a benign stage called monoclonal gammopathy of unknown significance. This is an early stage of cancer that eventually progressed to multiple myeloma in about 1% to 2% of the patients depending on the characteristics. I think trying to understand that progression is crucial because we believe, if we pick up these kinds of early stage of myeloma before it causes end organ damage, we will be able to help patients instead of waiting for a fracture or kidney failure, we can prevent this disease early. As I mentioned, this population have higher risk of myeloma in general. I think targeting them with screening which is actually a very simple blood work screening as ongoing and there are many studies trying to understand the progression from early disease to active myeloma.

One of the issues that we face a lot in our clinics is family members. As you probably know, multiple myeloma appears to be clustered in families. Anybody who gets multiple myeloma, we strongly recommend that they get the family members, especially first-degree members, screened because the risk of progression to myeloma happens to be higher in this population.

Jenny: From studies I’ve read, people who know they have these precursor condition, this MGUS condition, they actually live longer when they do progress with active myeloma.

Dr. Badros: That’s correct. You detect the disease early and most of the time, you can treat them before they develop extensive organ damage. Treating patients early is a huge focus for us now in myeloma community especially looking at smoldering multiple myeloma where we can introduce treatment early on. There are many initiatives, pretty much like the Black Swan Initiative trying to hopefully provide a cure for multiple myeloma if we treat patients early and this clinical trial is ongoing across the country and it’s available in our center as well.

Jenny: Great. I don’t want to put you on the spot if you don’t know, but what percent of patients have MGUS? I’ve heard that a large percentage of black people in general in the elderly population have this precursor MGUS condition. Do you know the difference between the white population and the black population in the elderly that have MGUS?

Dr. Badros: As a whole, there was a big study actually, about 12,000 patients, published by Ola Landgren. I believe the MGUS incidence in African American as a whole, not age specific, was about 3.5% and caucasians were in probably 1.5%. We know as we grow older over 50, about 5% of the population in the US will have MGUS. I think African American, if we consider, they are two to one. So I expect if you divide it, you probably have a higher incidence, maybe about 7%. But the number, exact number is not at my fingers at this point.

Jenny: Yes, right. We talked about the incidence of myeloma and the black or African American community compared to other ethnicities. Do you want to go into — well, we’ll talk about the genetics later. But in terms of disparities, what types of disparities are you seeing in treatment? Because many, many of your patients are black and you have a good read on what they’re experiencing. Can you share a little bit about that?

Dr. Badros: I think disparity in multiple myeloma is really two parts. Number one is a presentation. We know that African American patients present at a younger age. In our studies, as published the median age was actually ten years younger. Again, this is a referral bias. If you look in the field data, it looks like there is somewhere about five to six years younger in age. If the median age of multiple myeloma is 69, if you look at whites, it will be 71. If you look at African Americans, it will be about 65. So yes, it is definitely presenting at a younger age. The disease presentation itself is also a variable.

Many studies as well as ours have shown that anemia is a common presentation in African Americans. Some of them in our center for example have more renal insufficiency. If you look at fractures, and bone disease, it’s actually more common in whites. If you look at cytogenetics, African American in general present with more favorable risk compared to a Caucasian – more translocations or  hyperdiploidy which are favorable risk factors for myeloma. That’s their presentation.

The second part of disparity that we really deal with is referral. We actually do not get African American patients newly diagnosed in early stages as we see with Caucasians. In our study, we notice that African American get referred to a myeloma center for transplant with a 12-month difference. They are one year late coming to transplant to Caucasians. This delayed referral for a transplant center have been reported in other studies as well. Why that bias, we don’t know. It might be a physician related bias which is an issue that’s being explored in many centers. But more importantly, it’s probably socioeconomic and cultural.

The third in disparity is clinical trials. Most of the clinical trials in multiple myeloma have very low incidence of African American participation. Actually, if you look across the board, it’s about 4% of the patients in myeloma trials that are published for example in New England are African American. If you consider the 20% of the patients with multiple myeloma are African American, that’s a huge difference. That being said, we have to realize that most of those trials are done in Europe.

If we focus on trials run in the US like corporate of group trials, and I think Vincent Rajkumar’s group just published on that. You find that the participation is a little bit higher somewhere between 15% and 17% depending on the trial because a lot of African Americans do not want to go in new drugs. They like to go on established drugs that are used in combination so all of them are approved. And we deal with that in our clinics and we can talk about how we deal with our clinical trial enrollment. These are the disparities. Its presentation, its referral, its participation in clinical trials.

Jenny: How does myeloma compare with other cancers when it comes to these types of disparities?

Dr. Badros: Myeloma, as you know, I think there is a huge disparity for African Americans when it comes to cancer. We know that African Americans have the highest death rate in most cancers, and also shorter survival in the US. In multiple myeloma, despite the fact that they have higher incidence, we actually are lucky enough that their outcome is equal to Caucasians, if not better as they receive appropriate treatment. Probably, it’s one of the few malignancies where African Americans or blacks do better than Caucasians as a disease. I think that has been confirmed in many studies. I refer to that a little bit with the favorable genomic profile of African Americans that appears to give them a better prognosis.

Jenny: I’d like to talk about that next actually, because there are different genetic features that patients can have. They can have genes deleted on their myeloma cells or genes added to their extra copies on their myeloma cells or they can have a translocation where parts of the genes have swapped places. Those are called translocations. You’re saying that typically, when you look at a genetic profile of the entire population, the genetics are less aggressive basically for the African American or black population than they are for the white population. Do you want to just explain what you see typically with patients in the clinic? Is it the genetics or the studies that you’ve worked on?

Dr. Badros: When we looked at the FISH analysis which is a little bit more sensitive measure of evaluating chromosomal abnormalities in patients, most of the African American patients, and that has been confirmed in a lot of studies we participated in with the Mayo Clinic group showed that the African American patients have more translocations like 11;14, for example, which is a favorable marker and also more hyperdiploidy. Very interestingly, they all have less deletion 17. That has been detected in many studies. It’s clear that the deletion 17 is this unfortunate marker to pertain tumor resistance and patients usually have very short remissions. In African American, this particular abnormality is much less common than Caucasians.

This is using a chromosomal analysis in the clinic which is what we focus on. Using more sophisticated techniques, such as genome sequencing, whole genome sequencing which give the little bit higher resolution to look at the whole picture of the somatic mutation and genomic rearrangement. If you do that, you actually surprisingly find that African American have more mutations than what we see in Caucasians. Again, mostly involving translocations in the B cell area and a lower incidence of high risk genomics. There is a lot of interest in a SNP analysis which is single nucleotide polymorphism. It’s a little bit more sophisticated way. It’s basically a SNP or this polymorphism is the controlled genetic variations between individuals.

You can think of SNP as building blocks between the DNA and the gene. There are millions of them and specific changes in these particular blocks that occur between individuals can put you at susceptibility to multiple myeloma. Wendy Cozen, MD from California has actually pioneered this work and published about differences between African Americans and Caucasians. She has identified  specific variants. I think there were 16 variants she had reported in Caucasian and eight of them were found in African Americans. That actually increases the susceptibility to developing multiple myeloma. Again, this is a developing field. If you follow this field, it changes every couple of years. But it’s clearly that I think there is a genetic predisposition for African Americans. That’s different than what we described in the FISH analysis which occurs in the tumor itself after it develops. I hope that’s clear and simple. Maybe it’s not.

Jenny: No, it is. I just have some follow-up questions. Can you explain for hyperdiploidy for people who don’t know what that is?

Dr. Badros: Hyperdiploidy is extra copies of chromosomes. Our cells have 44 XY. If you start having extra copies of chromosome, and interestingly in myeloma, the extra copies are usually the odd numbered chromosomes. So you have extra copies of chromosome one, three, five, seven, nine, eleven and et cetera. We know that patients that present with this hyperdiploidy, at least in some studies, do have favorable prognosis. That’s what we describe as a hyperdiploidy.

Jenny: Great. When we talk about the genetics, I know some studies have been done like you said to study other cultures to see if the genetics were similar or if it was just maybe an environmental thing here in the United States. Can you describe what research has been done about that and what they found?

Dr. Badros: I think this cross-population or cross-cultural genomics is a starting field. I think in multiple myeloma, you need a lot of databases to able to do these kinds of genomics to discover differences. I think this field is just starting, and I think we can say that — I think the influence of environment in developing multiple myeloma has become less and less appealing as the possibility for developing myeloma in favor of genomic predisposition that can be found in early stages. Even in Africa, I believe some studies have been done as well especially in West Africa looking at that from big registries. Genomics do affect molecular alteration and mutations do affect the disease. I think I really don’t have specific studies to quote except what has been done in the US. I am not sure about Japanese, for example the Chinese, but I’m sure the studies also will be very helpful. These populations by the way do have less incidence of multiple myeloma, those races again for unclear reasons.

Jenny: Right. I remember seeing a study that was just showing that the genomics of the African population was very similar to the genomics of the black US population. What you’re saying overall is that they have more translocations but they’re lower risk. They have more hyperdiploidy which is lower risk. Ultimately, they should be living longer, and are they?

Dr. Badros: That is correct. If you look at the SEER database, African Americans live a little bit longer than Caucasians. In our study for example, despite the fact African Americans are referred to transplant, a year later, if you look at their survival from the time of transplant, it’s equal to Caucasians. But if you look at survival from the time of diagnosis, it’s a year extra. I think there is a clear signal now that African Americans might have a favorable — or maybe at least equal outcome to Caucasians. That is different than the previous reports that has been reported 20 years ago suggesting that African Americans do poorly with multiple myeloma. I think they do poorly if they don’t get adequate treatment. But if they are provided equal treatment, they do as well, if not better.

Jenny: You mentioned earlier that it’s been a challenge to study this population and gather all the information that’s needed. If you had a magic wand and could wave it over participation, some of these even observational type studies or studies that don’t even involve treatment. What would you wish for?

Dr. Badros: I think a big part of the problem is trust in the medical system. I think the African Americans over the years have been hurt by the medical system for many reasons and they felt a lack of caring from certain institutions, lack of respect from physicians. I think gaining their trust is crucial. I always remember, when I moved to the University of Maryland, which have a large African American population, about 40% of our patients are African American. Again, that geographic, because Baltimore is about 60% African American and Washington next door is 50% which is our referral base. I saw a young woman, she was a 29-year old. I saw her in the hospital with a cord compression and paralyzed. This woman for three years has been complaining of back pain going to different physicians and each one of them saying you need to lose weight – she was a little bit overweight – and she would wait and wait and wait and nobody took her complaint seriously to investigate it until she became paralyzed. I think you can imagine —

Jenny: Oh, my gosh.

Dr. Badros: — when I said I have a treatment for you how long it took her to trust me? It took her years. She actually did well. Recovered her cord function and eventually actually went on a clinical trial. I think, I will never forget what she told me. She told me, all that I needed is someone to respect me and not look at me  (I hate to say what I am going to say, but I will say it) as a big fat stupid black woman. I will always remember that. You need to respect your patients. You need to be honest with them. I’m presenting data to patients in a very straightforward manner. This is your option. I think this clinical trial will help you. It’s a new drug. This is the benefit. This is the pluses and minuses, and accept what the patient would say.

Some patients say, I can’t go on this clinical trial. That is okay. We have to respect their decision. Each patient is a big partner of this journey. He determines his or her selected treatment. Of course, our job is to guide them. Some institutions, if you don’t go in their clinical trial, they tell you, okay. Really, you can go in the community to be treated. I think that kind of approach needs to change. As physicians, we have to change our approach. The second thing that I noted in our patients, as I mentioned, they trust you, they will listen to you and they will be open to understand what you are saying. If they don’t trust you, little is done and that’s not just African Americans, it’s Caucasians as well.

Jenny: Absolutely.

Dr. Badros: I hope that patients can understand. Actually, we have done some observational studies like we developed an observational study for osteonecrosis of the jaw because we diagnose this condition here and I wanted to follow 200 patients. I think patients agreed to participate, agreed to give samples, agreed to give all of that because they felt they understood the problem. They understood what benefit they will get even from an observational study, not just a treatment study. I think understanding where they come from is crucial. Our success is shown in our publications. All of my investigator-initiated trials and our trials in the University of Maryland, we have about 35% to 40% African American enrollment. That’s more than double the national average.

Jenny: Oh, that’s terrific. That’s wonderful. Let’s go back to what you were saying, trust in the system and trusting your doctors. I think there is sufficient reason for them to be distrustful based on things like Tuskegee and Henrietta Lacks and things like that. How do we go about changing that? I think it’s really an intolerable thing today to see those types of things happen. How do we regain the trust for this community in myeloma researchers in general and doctors who want to refer and to this process, what do you think would help?

Dr. Badros: I think understanding where patients come from and basically helping them understand the disease give them your treatment options and respect whatever decision they make is a beginning. I think trust is a journey. That starts with the first time I meet patients. Some patients will express their skepticism and say oh, I heard that transplant is not important, why are you recommending it? I heard this treatment is not important, why are you suggesting that instead of that? I think answering patient questions, understanding where they come from is crucial. But to build better trust that has deteriorated over decades of both medical and society aggression again is the African American is a very complicated matter. Actually, most of it is probably beyond my understanding. I just deal on a very limited scope with whoever comes my way and I try to do my best. We succeed with many and I think that’s what I can say, just try.

Jenny: A question to follow-up on that what you just said about transplant. Have you studied or looked at transplant in the African American community and its impact? Is it more impactful, less impactful than other ethnicities?

Dr. Badros: We published on that maybe a couple of years ago now. We actually looked at the largest African American population. Our center reported we looked at about 170 African American patients, maybe more, maybe 175 and compared their outcome of characteristics to Caucasians that came to our center. The results confirmed that we do have a problem with referral patterns as they said. They get referred later to transplant. They have equal outcomes. Their survival is identical to Caucasians after transplant and longer if you look from the time of diagnosis.

Unfortunately, these kinds of studies in our center and other centers does have its own bias because most of the patients that don’t have insurance do not want to come to a tertiary center will not be counted. These group of patients, we have no access to, so we don’t know what happened. But when they come to transplant, they do very well. Overcoming this problem, a lot of people tried like Asher Khan looking at SEER Medicare database to look at African Americans in this registry. They noted that the same thing, African Americans usually are referred a little bit later to transplant.

The problem with this particular dataset is we are missing the young African Americans because Medicare database starts for older patients. As I said, African Americans — present at a younger age. It is this younger age that we are missing. The other observation that I just remembered is most of our transplanted patients, 70% of them are African American females. We are missing a lot of males if you correctly probably know that myeloma is more common in men than women and African American men have the highest risk. I think its 14 or 15 per 100,000. We are talking about missing a big chunk of the patients that will benefit from this treatment. Again, that socioeconomic cultural issue beside medical issues that are mostly beyond really my understanding.

Jenny: When you talk about transplant, I know there are a lot of studies running, early transplant versus late transplant. If these patients are getting transplants a year later than other patients, but they’re having better outcomes, would it be a good hypothesis to say if the transplant came even earlier, then these patients could really boost their longevity?

Dr. Badros: I think that’s a good hypothesis, but I just want to — I’m glad you mentioned that. Because standard of care for multiple myeloma is receive induction. And then once you are in remission, you go for transplant. The African American community, what we have seen in our center is you get induction. Your physician in the community tells you that transplant is this, that, and oh, (the patient then says) I don’t want transplant. So you stay on Velcade, Revlimid, dex for about 12 months. You progress. You go to another line of therapy. You go back to remission and then you see us.

So we have seen a lot of salvage transplant in this population not upfront transplant and there is a big difference in outcome as you know between salvage transplant and upfront transplant and your point is correct. We should be doing more upfront transplant to add the maximum benefit of it. Salvage transplant is beneficial but it’s associated with less progression free survival and definitely that’s a modality that is for upfront. If trials establish (and they are ongoing), that salvage transplant has the same impact on patient survival as upfront transplant, maybe we can consider both of them equal, but as of now, upfront transplant is a standard of care.

Jenny: I think as more data comes in and that gets more clear with more patients I think, that would be great. But I understand the need for an upfront transplant and why you would want to do that to kind of stay off the myeloma for as long as possible with the most powerful therapy that you can administer. It’s not a fun procedure, but it’s very doable for patients. When you were talking about African American men, —

Dr. Badros: Jenny, before we leave that point I would like to add something. As we become more sophisticated in our way to measure multiple myeloma disease as a disease, for example, nowadays, everybody is doing minimal residual disease assessment which can pick up one cancer cell in a million. I think Nikhil Munshi and others and the French have shown that you can actually have a better, an improved overall survival and made progression-free survival if you are MRD negative. Maybe in the next wave of trials that are ongoing, we are going to say, if you are MRD negative, whichever way you reach that negativity whether through a transplant or carfilzomib induction or Velcade induction, your outcome would more or less be the same.

We know that transplant gives you more MRD negativity and we know that certain treatments are improving this MRD negativity to an actually higher percentage of patients. That might be a surrogate marker that will be in the clinic soon to help guide patients who shall go for transplant now and who is an MRD negative that maybe we can wait to transplant. This is an area of debate, and I know a lot of people are trying to make decisions on that. So far, as I just said, we don’t have the trials to establish the clinical applicability of that, the data are promising but we don’t have trials yet to make a decision on going to transplant or delay a transplant by MRD negativity. But the data is coming along and maybe in a couple of years, we will be able to make clinical decisions.

Jenny: That would be wonderful when that comes because then you can more personalize therapy, how long and which therapies do you choose. That’s very difficult right now in my opinion for you all as researchers and clinicians. Going back to what you were saying with the 70% of African American females in the study, but African American men having the highest risk, do you see a difference in either willingness to participate in studies or you said there were some differences. What are those differences and how do we help the people that need it the most I guess is what I’m trying to say? What are the barriers that are preventing this?

Dr. Badros: This observation has been reported in our center also for leukemia trials where we noted participation of African American men is at a lower percentage compared to the females. I don’t know what is the exact cause of that but I will come to the point that it is probably a complex process and this is inequality in social situations, a lot of them cannot come to transplant because they have nobody to help them or care for them. A lot of them will have economic barriers. They cannot take months to go for transplant. Some of them don’t carry health insurance. As I said, there is some bias from physicians as well as bias for all the patients. We just don’t want to do anything that will affect their quality of life.

I think a good number of patients – for unclear reasons in the last couple of months, I have seen a lot of Jehovah Witness patients. It’s very difficult to offer them transplant. You have to be very careful giving them treatments because of the drop in the counts because they will not accept blood transfusions and platelets. We have to respect that and we have to tailor the treatment for them. Some of them just say, I will not get treatment. It’s not unusual to see a myeloma patient come my way and say, okay, thank you. I will not get treated. We see that infrequently.

There are many factors. It is a more complicated issue. The good news is if people come to the medical system and get hooked up with us and get treated, the outcome will be good. I think that’s really the message that should come out. The question is, should you come, should you trust the system, should you go to different opinions or have two or three opinions to help you? As you correctly mentioned, patients treated in Myeloma centers, people with myeloma experts usually do better than people that are treated in the community. I think that’s our job is to try to reach those patients and try to explain that we can help them hopefully understand where they are and give them options.

Jenny: I think I want to stress this point because I would say most of us get diagnosed in a general oncologist setting. We’re going to a hospital. We don’t know what’s wrong with us. We’re having back pain or whatever. We go to our local doctor who guides us to a hematologist or an oncologist and says, oh, you have myeloma. Of course, we’re going to start treating you. It’s really, really important for myeloma patients to seek out a myeloma specialist. Because if you can imagine, these doctors are treating patients with breast cancer and colon cancer and lung cancer and kidney cancer and liver cancer, all sorts of cancers. In my opinion, the advances that are happening in multiple myeloma are so fast and so nuanced that it’s going to be impossible for somebody like this no matter how much you love your doctor to understand myeloma, the depth that it needs to be understood.

In my opinion, the data shows that too. The University of North Carolina did a study that showed if you saw myeloma specialists within the first year of your treatment, you live 39% longer. The Mayo Clinic did a similar study that shows you live two years longer for patients who were seen at centers that have more than a certain, more than 15 or 10 myeloma patients. It’s the depth of experience that you have is unparalleled and really amazing. Patients can take advantage of your expertise and get better care. 

Dr. Badros: We hope that. Most patients that come to us for second opinion, most of them will go back to their referring physician. We don’t keep patients in our center. We do transplant here. If they go in a clinical trial, they stay with us. But I would say that more than 60%-70% of the patients will be back to their physicians, manage close to home and in an easier parking, easier access, but just to supervise a treatment even from a distance, that can be very helpful. I hope we can reach more patients to provide this service.

Jenny: Well, that’s a really nice partnership because they could go to you when they’re trying to make a treatment decision or watch periodically their status, and then you can flag things that might come up early and say hey, you might want to consider doing this or this and then they can go back to their center and go get all their infusions and all their lab tests and all that where it’s more convenient at home. I think a lot of patients do that. It’s very common and patients shouldn’t shy away from doing that.

Dr. Badros: I know. I think a barrier to that is going to be the socioeconomic status of the patient. If they are able to do that, if they have their income, the background, and occupation. As you know, many studies link those factors to outcome and myeloma in general. I think the outcome is related not to the genetic disease but to the access to better care especially in the African American population.

Jenny: For sure. According to the NCI SEER, and you mentioned some of these before. In 1998, a little more than eight black males per hundred thousand were diagnosed with myeloma. Today, it’s 15.9 black males per hundred thousand. For black women, it’s 11.6. For the general population, it’s 6.7. Some people might interpret those numbers and see the incidence of myeloma increasing especially among African Americans. Do you think that’s better diagnosis methods, not an increase in risk or how does your experience inform you about these types of issues and how should we as patients think about them?

Dr. Badros: The incidence of multiple myeloma at that particular timeframe was about 21,000, 22,000. Today, the incidence of multiple myeloma is 30,000. I think that its increased detection and I think was in increase in detection, African American who has doubled the incidence numbers did increase. The only increase that I’m aware of from SEER database include the young population. We know that there is increased incidence of multiple myeloma in patients younger than age 60. But all other groups are more or less unchanged. You correctly mentioned I think more awareness of the disease, more physicians are checking more for SPEP and free light chains, and that helped diagnose more patients early on. That’s definitely a factor in our technology in detecting these conditions and awareness.

Jenny: Do you think it’s longer life too? Because I think you are keeping myeloma patients alive for a longer period of time. I think that’s probably a rise in incidence because well, maybe not incidence but just number of people that have myeloma.

Dr. Badros: It’s called prevalence. Incidence is the new cases occurring every year. But you’re right, the prevalence. People living with multiple myeloma as a whole is also increasing. That’s related to the newer treatments. The median survival of multiple myeloma in the same timeframe in 1998 which you mentioned was about three years with transplant and was all that we have. This median survival is probably approaching ten years. I think last data was seven years. I think that will be increasing in the next couple of years due to introduction of newer drugs and immune therapy and CAR T-cells. All this technology and the developments really had a huge impact in myeloma patients. I don’t think there is any other malignancy where survival has tripled like multiple myeloma.

Jenny: Yes, it’s incredible. I think I made an error saying per thousand, but it’s per 100,000. That’s a big difference. I need to make a correction there. You have performed a lot of research. I know you had an article or a study that you cited in Blood last year which found some differences between different categories of patients. Is that the study that you are mentioning earlier or do you want to share any studies that you have been working on or clinical trials that you’ve been working on to study this field in particular?

Dr. Badros: We published in cancer on the disparity between black and white patients with regard to transplant. We have a couple of abstracts presented over the last couple of years. You correctly mentioned, looking at FISH abnormalities or cytogenetic signatures. This year, we are trying to study actually weight and BMI or obesity in different groups with multiple myeloma. You probably know that patients that are obese or have differences of lifestyle can affect myeloma incidence. There are enough studies to say that obesity affects incidence of myeloma. It’s very unclear if this is an African American related issue or it’s just obesity in general. There are some studies looking into that. But I think I will take it as a broad-spectrum differences in lifestyle do affect the incidences of multiple myeloma.

The last thing we are really interested in and looking at that moment is familial multiple myeloma. We actually identified 18 families in my practice that have the first-degree member with multiple myeloma. Some of them actually have two or three. Those are quite intriguing because we always, and that’s why I’m saying, I think there is a genetic predisposition to multiple myeloma that is becoming more and more clear as the studies SNP and whole genome sequencing. That has been established as well. Familial multiple myeloma is much more common in blacks. If you look at our population, those 18 patients, 16 or 15 of them, actually 15 of them are African American.

The literature has established that. So first degree relative, being a man, present in early age of multiple myeloma increase your familial risk for myeloma. It’s interesting when you start seeing patients and their family members having the disease that it’s indicating some kind of a genetic predisposition, not just environment which has been the idea (or lifestyle issue)s. I think it is crucial and probably help us understand more the genomic landscape of multiple myeloma. We ended up with a couple of twins actually with multiple myeloma. The reason we do that is we check for a transplant and you find that oh, his family member has MGUS or has lymphoma or has myeloma. We are paying attention to that a little bit more closely and hopefully will be able to publish this data once we have a little bit more information.

Jenny: Is it an open observational study that somebody can join at your clinic or are you looking at patients just who are being seen in your clinic in kind of retrospective data. Is there is something that patients can join and do?

Dr. Badros: I think so far, we have been doing this by observation. Every time we see a patient, we definitely check their history. If the family member is around, we try to get samples from them to see if it’s the same IgG when they present, so we get their history. But I think starting a prospective data and I think there is a lot of interest in that. I believe Stand Up 2 Cancer, Irene Ghobrial is trying to do something similar. Look at high risk patients. They look at the incidence of early myeloma because I think these family members, if we can pick up myeloma in them early, we definitely can prevent complications as you correctly mention hopefully have a long survival. We have not done that in our center prospectively, but this is something we definitely like to pursue especially in our African American population because very few prospective studies, observational studies have been performed in African American patients.

Jenny: I just want to stress that point I guess. Dr. Ghobrial’s study, I think it opens on October 15th or so, and family members of myeloma patients can join also, and so can African American community to see what’s the family incidence and is this a family genetic thing? There’s a difference between an observational clinical trial and a treatment clinical trial. Do you want to just give a quick review of the difference between those two? Because the observational studies are really easy to join.

Dr. Badros: There are many observational studies like we have done a couple of other observational studies in our center looking for osteonecrosis of the jaw (which is a complication in multiple myeloma patients receiving bone strengthening substances like bisphosphonates and RANK, like an inhibitor like Xgeva.)  We wanted to know the actual incidence, not just look at cases as you know. In the literature, you find oh, a case here, a case there. We wanted to look at the high-risk patients and see who will develop that condition. We followed patients for two years. Every six months, they come to see us. We obtain blood samples and saliva samples. Nothing extra, but patients come to give blood to obtain myeloma staging and at the same time we take part of that for the research studies that we are doing.

This was an observational study and it doesn’t require much from patients. Actually, to my surprise, almost half the patients by the one year dropped out of the study. They  don’t want the extra work that they don’t think will directly help. That’s different than the clinical trials or trials with drugs which include randomization, some trials of phase one or two trials. I think most of your audience probably those are different between different trials. Participation is different. Phase one trials are usually for later stages of disease, randomized trials (phase III) where you can get the drug or not get the drug are usually for established patients. These kinds of trials usually introduce newer treatments for patients. You probably know that participation is very low in the African American community.

Jenny: Yes. I know we’ve talked about a lot of these aspects, but maybe a summary question before I open it up to caller questions would be – really how would myeloma research and treatment be different in your opinion if African American participation levels in support groups, clinical trials, specialty clinics and referrals would become at the same rate of the rest of myeloma patients? If everything were as optimal and better than what they should be, how do you think patients today might benefit?

Dr. Badros: I think it is a huge issue for African American community to participate in clinical trials. We know that genetic groups or racial groups react differently to different drugs. If we’d take Velcade, for example, or bortezomib, we know that the incidence of peripheral neuropathy in African American patients is much higher than what you put in a Caucasian. We didn’t know that on the clinical trial because participation of African American on the initial studies was very low. But in our center, when we see the patients, we reported that. We reported on the painful peripheral neuropathy that occurs more in African American.

The same with Japanese, for example, when the Velcade was introduced, we know that all of a sudden, there were people in Asian families started having pulmonary complications and hemorrhage or pneumonitis with Velcade – which has never been reported in the initial trials in the US. What I’m trying to say is participation in trials give us a better understanding of how drugs act in different racial groups. And actually, more importantly for patients is they get newer drugs first. For example, if you want to get a CAR T-cell today, which I know is very hot and everybody wants to get it, even newly diagnosed patients, the only way to get it is to go in a clinical trial.  

The problem is when the drugs or the treatment modality is not publicized enough, people don’t want to do it. I remember, when we opened the carfilzomib trials before its approval, you had to tell patients, this is an effective treatment, please take it. Some patients will say, yes, I don’t have any options, or I would like to try that and leave my options for later because that’s almost a debate. When should I go on a clinical trial? I think we should go on a clinical trial if it’s promising, if it has some efficacy to better leave the other options for later on. You can get daratumumab at any time, but you can try this drug upfront.

Nowadays, most trials really driven by patients require patients to be refractory to everything. So you have received all the myeloma treatments. Now, if you have no options, we can offer you the BCMA antibody trial or the CAR T-cell. That’s where the field is going. I think participation of African Americans will give us a signal for what’s going on and we’ll provide them with treatment that otherwise will not be available to them.

Jenny: Yes, absolutely. I think there is so much hope and promise because you can really — by seeing the genetics, by having participation in the clinical trial — you could really identify a particular treatment that might work better for this population than others like you gave the example that a lot of these patients have the 11;14 translocation. Now, we know that venetoclax might work particularly well for this population. If you’re able to do these types of studies, you can say oh, wow, the optimal path for a patient that looks like this with these types of genetics for this racial profile looks like this, that would be amazing.

Dr. Badros: Yes. I think studying those cases in more details is very much the way we are heading. You correctly stated the 11;14. Probably in a couple of years, this multiple myeloma which we know all of us, it’s a very heterogeneous disease. We will be able to actually say, 11;14 myeloma gets treated this way, 17p myeloma gets treated this way, double-hit myeloma which is a new definition meaning myeloma with two abnormalities like 17 deletion and 4;14 transportation get treated this way. Until that happens, the only way it will happen actually if we start doing trials looking at those patients.

Jenny: Yeah, absolutely. Well, I want to leave a few minutes for caller questions. This is just such an informative and valuable show. We have a caller in the studio, but I can’t see the phone number. If you hear something in your handset, I am adding you on and will invite you to ask your question to Dr. Badros.

Hi, there. Are you online?

Caller: Hi, Jenny. It’s Dana Holmes. I’m sorry. I forgot to unblock my number. I was calling from an office phone. Thank you, yes. Hi, Dr. Badros. How are you? Thank you so much for doing Jenny’s show. We just love these interviews because it really gives us patients the opportunity to connect with amazing specialists such as yourself. Thank you for taking the time this morning. Dr. Badros, with younger patients, I know whenever I read that younger, I often wonder if I fit the bill because I just turned 61 and I think to myself, well, I’ve got to be a senior patient. I’m still smoldering. I’m often confused by that whole idea of 65 and under or 60 and under is considered a younger patient. Why is that?

Dr. Badros: I think 61 is young and I’m glad you feel young. Actually, when we talk about young in multiple myeloma, we are really talking about patients in age 50. This population I think in my mind is a little bit different. As I said, they are increasing in number. Some of them independent of African American or Caucasian do have very aggressive presentations. We haven’t published that yet, but we will. For example, plasma cell, leukemia, primary plasma cell leukemia which is a very aggressive form of myeloma at presentation, very rare. It’s clustering in younger patients as in age 50. They might have a little bit of a different presentation. At the same line, younger patients that present with a standard multiple myeloma will do very well. It gets treated aggressively and those patients can be treated aggressively, and they have longer survival. It comes down to the biology of the disease and I think younger patients might have a biologically different myeloma than older patients.

Caller: That’s interesting. Jenny has these Facebook groups. She had general groups for everybody to join, and then she created these smaller subgroups. There is a group for patients under 50 and then we just created one for patients under 40. You don’t think of it in that age population and a lot of those patients have a very, very difficult time getting the actual diagnosis because they don’t fit the demographics. They don’t fit — they’d go to a doctor and that’s the last thing that they are thinking about is testing them for myeloma because of the age.

Dr. Badros: Actually, this point is very important because I just mentioned about the example of a young woman that came to our way. But we have in our center at the moment patients under 20s. We have over three or four of them. They take a longer time to diagnose. We don’t think of myeloma at the age of 28 or 26, but we are seeing those patients. I think more awareness on the physician — one of those patients diagnosed herself. She said, I have high calcium and back pain. I put it in Google and Dr. Google told her myeloma is one of those cases. So she came to see us. Actually, she referred herself, “I think I have myeloma”. I usually don’t see these patients, but she insisted I see her. She was right. She has non-secretory myeloma that is causing her tumor on the spine as we biopsied and established. What I’ve seen is sometimes you’re right, it’s not easy. But I would like to go back to patients that are younger, and they have questions and experience of a center makes a difference and help people.

Caller: Absolutely. We actually had a member in one of our groups. She was the mom of a young boy who was diagnosed at 13 years old, and he passed away at 18, but he had multiple myeloma and he was being treated for it. We were astounded by that I — just the thought of it, how does a young person actually even develop it? I wondered and I was listening to what you said that perhaps there is a genetic component to it somewhere along the line because it doesn’t make sense to realize that this is an older person’s disease, yet we were seeing these —

Dr. Badros: It is very rare in this age group, less than 20. It’s really rare. You find those case reports and they are really, really rare. A lot of times, they are confused with lymphoma and myeloma becomes difficult to diagnose. They’re out there.

Caller: How do we interpret survival trends for the younger myeloma population? Because you know, you read these survival trends and it’s generally the older patient population that they’re studying. How would a young patient actually look at that and sort that through? Or doesn’t that matter? Does it matter mostly what your disease biology is at the onset?

Dr. Badros: I think most of the myeloma survival, it depends on some disease biology but also in treatment delivered. The improvement in survival is occurring across all age groups. That being said, as I said, there is a subset of patients that might have an aggressive presentation that is biologically dictated. We know that patients with deletion 17 for example. If it’s present, then more than 60% of the myeloma cells will be a detrimental factor for survival. Most of those patients have a median survival about two years in respect over the treatment given. Sometimes, when the biology is very aggressive, it doesn’t matter what treatment you give. But most of the time, 80%, 90% of the myeloma patients that present with regular myeloma gets treated. They have improvement and survival over the last 10 years.

Caller: You are a site for the ASCENT trial? Is that correct? Is the University of Maryland a participating site?

Dr. Badros: Yes.

Caller: That’s terrific. I would think, because you do have a large representation of the African American population, we’ll likely have patients that you could enroll into the ASCENT trial to make that a more well-balanced trial I would think. Have you enrolled anyone yet?

Dr. Badros: I think that the trial opened nationally, and I think we enrolled the first patients last week and we have another patient coming in a couple of weeks. So we have two patients on this study.

Caller: In your center?

Dr. Badros: Yes. 

Caller: That’s exciting. Thank you for doing that work. The smoldering myeloma patient population are really — we’re keeping our eyes on that for sure. I just wanted to ask one last question concerning MRD testing. I think what really always puzzles me is the idea of them taking a small sample from your bone marrow biopsy or from your bone marrow and testing just that particular sample to determine MRD positive or negativity. I’m thinking that it cannot be a full representation of the entire marrow just that one spot or is it assumed that if you have an MRD negative finding that that particular sample is representative of the entire marrow?

Dr. Badros: I think as I just mentioned, MRD negativity is still a resource tool. Most of the decisions should be done on a clinical trial. There are some caveats to the MRD negativity. You mentioned one of them. This is a representative of the bone marrow. And we believe it is the bone marrow in general. But there are three problems with this in my mind. Number one, patients who present with MGUS or smoldering myeloma and progress to multiple myeloma, a lot of those patients would retrieve them. We get rid of the myeloma clone, of the aggressive clone, and we go back to the MGUS stage. Those patients will have an M spike of 0.1, about 4%, 5% plasma cells in the bone marrow, so they are MRD positive. But they have the same progression free survival, an overall survival as myeloma in complete remission. The side effect, they are not MRD negative. They do very well.

On the other hand, if you do correctly as you mentioned, myeloma can spread to other sites. Let’s say that you have a plasmacytoma, a tumor, mycoplasma cell in the thoracic spine and we did the biopsy on the iliac bone. We will miss that. That’s why now we are combining MRD negativity with a PET CT scan to see if there’s any activity outside. The story is developing. I don’t think we have an answer that they just said, and I just want that to be clear because I get that question a lot. It’s not ready for primetime and say okay, let’s take it and make decisions on it. Decisions should be done in clinical trial. Unless, one read of MRD, meaning doing MRD today is not a — what’s more important is repeating the MRD. The question is should we repeat it in six months? Should we repeat it in a year? How many negatives do you need to call it really a negative? And again, those answers are not out there.

Caller: Yeah. We’re still years away from probably seeing, really true. I guess the guidelines, the real book that somebody could open in the manual and say okay, this is how we do it. Well, thank you.

Dr. Badros: I think we can do it, it doesn’t mean we should act on it. We can do a lot of things — but most of them, we should think twice before we act on them.

Caller: Right. You brought up a very good point about treating let’s say a smoldering myeloma patient early and wiping out the more aggressive clone. Could the opposite happen with earlier treatment? In other words, could you end up treating just the non-aggressive, the less aggressive clone leaving the aggressive clone behind to actually proliferate and become a real issue?

Dr. Badros: That is a huge issue with multiple myeloma. We know that at presentations of any myeloma, there is about six or seven clones at diagnosis, even an MGUS stage and smoldering. Your point is very — actually about five years ago, we have reported on smoldering patients that we treated with Revlimid, dex followed by transplant and was then a couple of months, the smoldering patient, one had plasma cell leukemia and one had aggressive relapse with positivity. Actually, we published that.

Actually, the debate was are we doing harm on those trials? It is very good point because sometimes  we can leave some aggressive clones behind. That’s really one of the attractive aspects of the ASCENT trial. The ASCENT trial is treating smoldering myeloma patients more aggressively than we treat myeloma patient. We are giving them daratumumab, carfilzomib, Revlimid, dexamethasone. The question is why are you giving a premalignant condition more aggressive treatment than you give to your regular myeloma? The concept is what you just said. Try to attack different clones and more importantly trying to impact on the disease biology to cure multiple myeloma. Multiple myeloma is still an incurable malignancy. That’s why trying to intervene early aggressively, can we change the biology of the disease. We know now that if you give patients lenalidomide or Revlimid with dexamethasone to smoldering patients, you can prolong their survival. But it’s very clear from what’s published that you don’t actually cure —

Caller: Eradicate the disease.

Dr. Badros: Now, attempts are being a little bit more aggressive. Can we actually impact this different clone and eliminate the disease? The trial started and as I said, we have two patients. We’ll see where we go from here.

Caller: Well, it’s an incredible concept.

Dr. Badros: It’s an incredible concept, but such a trial requires — it’s a commitment for us because I have to treat those patients, but also requires motivated patients. Let’s say, okay, I understand the risks. I understand the benefits. Consenting patients on this trial takes much more time from all of us than it takes for myeloma patients because you have to explain the benefits, expected risks, side effect of drugs and the goal of treatment. It’s a trial that believe it or not, most of the time, patients will tell me I’d like to go to this trial rather me telling them I’d like you to go to this trial.

Jenny: For sure.

Caller: A whole other aspect to that too is the time commitment for patients. It becomes an expense and you have additional copays and things of that nature. But on the flip coin, you’re getting all of the best possible drugs in the toolbox and you’re getting them, and you’re getting them early at no cost. There is pros, there is cons, and it’s really intriguing because I have a smoldering myeloma group and a lot of us have been looking at it. Some have actually applied for it but didn’t meet the criteria. That’s a good thing too. It’s a good part of the trial because they’re really being very, very specific about the population that they’re making certain that they truly are these super high-risk smoldering myeloma patients and capturing the right patient.  

Dr. Badros: I just would like to emphasize that point because you’re absolutely right. This particular trial is designed for high risk smoldering patients that with what we know today have an 80% chance of progressing to multiple myeloma or 50% chance progressing to multiple myeloma. That’s why the criteria include M-spike, light chain and bone marrow percentages, not to give it to patient that will have a chance to stay in remission without any intervention for a long time. It’s a high-risk smoldering trial.

Caller: Right. Very good. Well, sir, thank you so much for your time. Jenny, thank you for allowing me to ask all these questions. I appreciate you both, and I wish you a wonderful day. Thank you so much.

Dr. Badros: Thank you. 

Jenny: Thanks, Dana. Dr. Badros, I just have a follow-up question for that. When you look at the African American community for these precursor condition studies that are being run. What is your opinion on potentially earlier treatment specifically for the African American community?

Dr. Badros: I think it’s an opportunity, actually. I think it’s an opportunity for African American patients with disease that can cause damage if you don’t treat it. Enrolled on those trials, I have to admit the first patients are Caucasian. I am hoping to be able to reach the African American community to go on those trials. It will be a challenge with all the ramifications. As I said before, each patient should determine and select a treatment course. Our job is to give options, understand the disease, understand the treatment and respect whatever decision they make. If the patient wants to be followed without treatment, I will follow them without treatment. I won’t be upset if they don’t know join my clinical trial. I would be more than happy to follow them and initiate treatment when indicated. But in general, I think it’s a huge opportunity. I think any high risk African American patients who have this condition should seriously consider a clinical trial like the one we have.

Jenny: Yes, absolutely. This is something that HealthTree tool that I mentioned earlier can help to also to kind of assess maybe options you might want to consider and then go take it to the myeloma specialists or your doctor and have that conversation because you can do that without, and do that from home.

Dr. Badros: Just an important point, Jenny. Treating smoldering myeloma is an experimental treatment. It’s not a treatment that can be given to the community. Really, we are again giving smoldering myeloma patients treatment of protocol. I don’t want to give the idea that okay, I have early disease, let me treat it somewhere and get the remission. I think it’s got to be done on a clinical trial, so we understand the ramifications of what we are doing. Would it negatively impact the outcome, positively impact the outcome, what side effects to accept, and not accept in this more or less premalignant condition?

Jenny: Yeah, that’s a critical point, very critical point. Okay, we have one last caller. Go ahead with your question.

Caller: Hi, Dr. Badros.

Dr. Badros: Hi.

Caller: Hi. Listening to your — today has been really enlightening. I have just two quick questions that have nothing to do with each other. One is it occurs to me listening to you —  we’ve been talking about the disparities between African American and Caucasian populations – — It occurs to me, I’m listening to you over and over again today that black males are a disparity within a disparity. Are there other disparities within the disparity of the African American community that we need to be paying attention to? That’s the first question. The second question is rather boring. The other thing I keep hearing over and over again is the preference of local doctors. The other thing I hear is that you do get patients referred to you but they’re referred late. Can you give us maybe an example or two, just a practical example of how you interact with local doctors where you think it works really well and that might be a model for how specialists like you can work with local physicians. Those are my two questions. Thank you.

Dr. Badros: About disparity within disparity, I think it’s mostly socioeconomic. I think level of medication, income, occupation affects the decisions to come to us. That’s really across races. If you’re white or black and you have no insurance, it’s very difficult to get to a tertiary center for transplant for example. In our community, we are really lucky because we are close to Washington. Very educated African American population. Most of them have above average income. I don’t see that problem once you start equalizing the socioeconomic factors and education. It will fall back to what I just mentioned about favorable marker genetically and giving the same treatment. It is really probably social and as I said previously, probably much better understanding of socioeconomic factors or a discussion about access to care which is a huge issue in our healthcare system today. Barriers to that system is probably worth maybe a meeting with someone who understands that stuff and Jenny can find people that know that stuff better than me.

As far as the bias of physician or referral pattern, I think in our area here, I think we have a very nice relationship with community physicians. We are very lucky that I live in Baltimore with about six world renowned institutions around us. All of them have physicians trained with our center or with Hopkins MIH or Washington. You actually have a very highly educated pool of physicians. A city doesn’t lack the sophisticated physician. I give my numbers to physicians. They can call me directly when they see a myeloma case. I always offer a trial if it’s available. If the trial is not available, I respect the physician who referred the case and I always recommend treatment close to home. I would like to see the patient usually before they start treatment or within one cycle of treatment to see how things are going, and I recommend change of treatment if I suspect it’s an aggressive case, or the treatment is inadequate.

A lot of times, nowadays, we get phone calls because physicians don’t really know. They give Velcade twice a week, once a week. How would I give carfilzomib? Two times a week, once a week?. What dose you give? 27, 36, 56, 70. The myeloma community and physicians, we are making it very difficult for people to have a good book to go by, so they have to use us. We are a transplant center. We usually get referral for transplant as well as older myeloma. That being said, our community opens a lot of clinical trials for myeloma patients and we support that especially elder patients that we see frequently. We open trials for elder patients, randomized trials for patients over ages 75 or those ineligible for transplant. I hate to say it, but most of those trials enroll one or two or three patients. Patients either for many reasons, again socioeconomic, most of them cannot go on those trials. That’s all.

Jenny: Okay, great. Thank you for your question and thank you for your answer. Dr. Badros, thank you so much. We’ve kept you way over time today, but we’re grateful that you stayed with us. We’d like to remind everybody about the Louisville meeting on Saturday morning, this coming Saturday. If you’re in the area and you would like to join us, it will be very informative day talking about some basics about myeloma, financial resources and things that the African American community can be particularly helped with. We would just like to say thank you so much for participating and sharing your important work with us, Dr. Badros.

Dr. Badros: Thank you for the opportunity.

Jenny: Well, we’re very, very grateful for you. We’d like to thank our listeners for listening to Myeloma Crowd Radio to learn more about the myeloma research and what it means for you.

 

About Author

Jenny A

Myeloma survivor, patient advocate, wife, mom of 6. Believer that patients can help accelerate a cure by weighing in and participating in clinical trials. Founder of Myeloma Crowd, Myeloma Crowd Radio and the CrowdCare Foundation.

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