Tag Archive for: bone marrow biopsy

30-Year Acute Myeloid Leukemia Survivor Shares His Journey

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30-Year Acute Myeloid Leukemia Survivor Shares His Journey from Patient Empowerment Network on Vimeo.

What might acute myeloid leukemia (AML) patients experience for symptoms, treatment, and coping with AML? AML patient and Empowerment Lead Art Flatau shares the experience of his AML journey from diagnosis, through treatment and AML survival, and advancements in AML treatments.

Art also shares his empowerment advice for patients and care partners to ensure optimal care and how he has found a sense of purpose in patient advocacy efforts.

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Empowered AML Patient: Ask the AML Expert 

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Advice for Acute Myeloid Leukemia Patients Seeking a Clinical Trial 

Transcript:

My name is Art, and I live in Austin, Texas. In 1992, I was 31 and married with two young children. I was in graduate school and working full-time. For a couple weeks, I had been feeling tired and had been running a low-grade fever. I also had a lot of bruises, probably because I was playing rugby at the time. I thought the fatigue was because I was overworked and getting  too little sleep.

On Saturday, I had a rugby game but was too tired to play more than a few minutes. The next day, I was too tired to do much. My wife and I decided that I would go to the doctor on Monday. 

Monday morning, I woke, and there was blood on my pillow as my gums were bleeding. My wife wanted to take me to the ER, but I convinced her to just call our doctor. I went to the doctor later that morning. She noted my symptoms, did a quick exam, and sent me for blood work. After lunch, she called and said I needed to go to the hospital and see a hematologist. I knew I was in trouble.

We talked to the doctor and he said, “We have to see what kind of leukemia you have.” What a shock.  I knew that I was sick with something I had not had before. The fact that it was cancer was a shock. I didn’t know that there were different types of leukemia but soon found out that I had acute myeloid leukemia (AML).

That evening, I received platelets and red blood transfusions. The next morning, I had a bone marrow biopsy, more platelets, and surgery to put in a central line. That afternoon, less than 24 hours after hearing the word leukemia in reference to me, I started chemotherapy. This was all overwhelming. We had no way to understand what our options were or to get a second opinion.

Three-and-a-half weeks later, I got out of the hospital with no hair, 25 pounds lighter, a lot weaker but alive. I had more chemotherapy in the next few weeks and more hospitalizations. A few months later, I was finished with chemo. I regained some strength, regrew my hair, and tried to get my life back to normal.

In early 1993, about 9 months after being diagnosed, we got another shock, I had relapsed. I needed to have a bone marrow transplant. Although we had a little time, a few days to figure out where to go for a transplant, we were again struggling to understand the process. We were also struggling to figure out how to move to Dallas for three more months for the transplant. The transplant was a long grind, a month or so in the hospital, a couple of months of going to the outpatient clinic two to three times a week, but we made it through. 

Now, 30 years later, I’m still around. My children graduated from high school, college, and graduate school and have successful careers. My wife and I are empty-nesters.  I am still working but hoping to retire in a few years. Although I consider myself very lucky to have survived and have had relatively few side effects, I do have some side effects to deal with, including low testosterone.

Some things that I’ve learned during my AML journey include: 

  • AML is a rare disease: The good news is that over the last several years a lot of new treatments have been discovered for AML. These new treatments are leading to more people surviving AML. However, these new treatments are evolving rapidly. It is important to find a cancer center and doctors who treat a lot of patients with leukemia. 
  • Consider volunteering: Advocacy work is an excellent way to help yourself and to support other patients and continued research efforts.
  • If something doesn’t feel right with your health, advocate for yourself and ask for further testing.

These actions (for me) are key to staying on my path to empowerment.

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What Is Minimal Residual Testing in Multiple Myeloma?

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What is Minimal Residual Testing in Multiple Myeloma? from Patient Empowerment Network on Vimeo.

How is minimal residual testing (MRD) used for multiple myeloma patients? Watch as expert Dr. Nina Shah explains the use of MRD testing, and myeloma patient and Empowerment Lead Lisa Hatfield shares her knowledge of MRD testing and how specialists use it in treatment and care.

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Where Should I START Following My Myeloma Diagnosis

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 What is a FISH Test

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Transcript:

Dr. Nina Shah:

Minimal residual disease is exactly what it sounds like. It’s the disease that you can’t see under the microscope, but it’s still there. And I sort of equate it to the little deep food particles that are in a pot after you clean it and really, really scrub it, but still, something is in there. And that’s what it is for myeloma.

Minimal residual disease testing, or MRD testing, is performed to locate any small number of cancer cells that remain in the cancer patient’s bone marrow during or following treatment. The presence of any remaining cancer cells is the most common cause of relapse in blood cancers, so MRD testing is used to gauge treatment success, to compare different treatments, to detect myeloma recurrence, to monitor patient remission, and to help choose optimal treatments. 

Lisa Hatfield:

So when I was first diagnosed, MRD testing, or minimal residual disease testing, sometimes called measurable residual disease testing, was just, they were looking at having it approved by the FDA for clinical trials only. Still it was only approved for clinical trials as an end point. However, a lot of myeloma specialists are using this MRD testing to help guide decisions. It’s not approved for that yet but to help guide decisions for patients who have a really great response to their induction chemo and stem cell transplant that they may have after induction chemo and after some years of maintenance to see if they can possibly go off of their maintenance therapy. It is occasionally being used, MRD testing, is being used to help guide providers and patients on where to go with treatment. So MRD testing requires a bone marrow biopsy. The most sensitive MRD testing is called clonoSEQ testing, it is NGS testing. It does require the original bone marrow sample, and then they can track that over time each year or however often you have bone marrow biopsies to see if the cloned cells are still there.

So MRD testing right now requires the bone marrow biopsy. I’m hoping that someday it can be done with a blood test, but it’s really important for tracking purposes to see if you’re responding to therapy, to see if you’re staying in remission during maintenance therapy. And it’s even worthwhile too if you’re having toxicities from maintenance therapy to consider going off of that therapy. You can test to see, right now the MRD testing is testing to see if they can find one myeloma cell out of one million cells. So it’s called 10-6 MRD testing. That’s the most sensitive test that’s out there to date and really important if you’re considering possibly going off of maintenance therapy or are having significant toxicities during your treatment.

What Is a FISH Test?

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What is a FISH Test? from Patient Empowerment Network on Vimeo.

What is a FISH test for multiple myeloma patients? Watch as expert Donna Catamero explains how fluorescent in situ hybridization (FISH) testing is used, and myeloma patient and Empowerment Lead Lisa Hatfield shares her experience with FISH testing and her advice to other patients.

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How is Multiple Myeloma Diagnosed and What Testing is Necessary After

How is Multiple Myeloma Diagnosed and What Testing is Necessary After?

 What is Minimal Residual Testing in Multiple Myeloma

 What is Early MGUS

Transcript:

Donna Catamero:

So, FISH is a cytogenetic technique. So, what we do is, when we do the bone marrow, we send that off and we look at the genetics. Like I said, it’s a snapshot. And certain mutations will put patients in different risk stratifications, so we normally do this at the time of diagnosis and then with each relapse.

In a FISH test, a bone marrow biopsy is taken to map out the genetic material of a cell using fluorescent dyes. These dyes show specific parts of chromosomes and help locate genetic issues like 11;14 translocation, 17 deletion, and others that are important in determining multiple myeloma treatment. If you have not had a FISH test, make sure to ask your doctor if the test should be performed to aid in your diagnosis and treatment.

 

Lisa Hatfield:

The first time I heard FISH test I had no idea what my doctor was talking about. It was actually a nurse practitioner who works with my myeloma specialist who said, “Your FISH test came back, and you have two abnormalities. One of them is called translocation 11;14, standard risk. And one is called monosomy 13, which sometime in the past used to be considered a higher risk but apparently it’s not anymore.” She was trying to explain this to me. I had no idea what she meant what a FISH test was. As time went on and I started to study a little bit more, do a little bit more research on myeloma, I understand the significance and the importance of having a FISH test done for anyone who’s getting diagnosed at a local hospital or community cancer center. I encourage everyone to make sure they can have a FISH test done even if that means consulting with a myeloma specialist to ensure that they can find those cytogenetic abnormalities or to test for those. Because that will help guide your treatment and your prognosis going forward. You want to know what those cytogenetic abnormalities are. They’ll be tracking those over time. So a FISH test is kind of confusing. But without going into too much detail, it’s an interesting test that they can do. It’s very helpful if it’s done at diagnosis. Important to be done at diagnosis,  so those genetic abnormalities can be tracked over time through further testing.

How is Multiple Myeloma Diagnosed and What Testing is Necessary After?

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How is Multiple Myeloma Diagnosed and What Testing is Necessary After? from Patient Empowerment Network on Vimeo.

What testing is involved in multiple myeloma diagnosis and treatment? Watch as myeloma expert Dr. Elizabeth O’Donnell explains specific types of myeloma testing and what they check for, and patient and Empowerment Lead Lisa Hatfield shares testing that she’s received and typical tests for myeloma diagnosis and care.

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What Are the Beginning Stages of Multiple Myeloma (MM)

What Are the Beginning Stages of Multiple Myeloma (MM)?

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Transcript:

So how is multiple myeloma diagnosed? The International Myeloma Working Group (IMWG) confirms diagnosis with both:

  • Presence of malignant plasma cells in the bone marrow at greater or equal to 10 percent or presence of extramedullary or bony plasmacytoma, confirmed with biopsy
  • CRAB features:
    • Calcium elevation: serum calcium greater than 0.25 mmol/L (> 1mg/dL) higher than the upper limit of normal or greater than 2.75 mmol/L (> 11 mg/dL)
    • Renal failure (or kidney failure): creatinine clearance less than 40 mL per minute or serum creatinine greater than 177 μmol/L (> 2 mg/dL)
    • Anemia: hemoglobin concentration of greater than 2 g/dL below the lower limit of normal, or a hemoglobin concentration of less than 10 g/dL
    • Bony lesions: one or more osteolytic lesions found on X-ray, CT scan, or PET‑CT scan
  • Ratio of involved/uninvolved serum free light chain ratio greater than or equal to 100
  • Clonal plasma cells in the bone marrow greater than or equal to 60 percent
  • One or more focal lesions found on MRI studies (measuring a minimum of 5 mm in size)

Dr. Elizabeth O’Donnell:

Testing really does depend a little bit on the stage at which your disease is found. In general, we use a very specific blood test that lets us know that there is clonal protein present. Remember, plasma cells are a type of white blood cell, and they make something called antibodies. We use a test called a serum protein electrophoresis, which is a blood test – an SPEP, we call it – that can tell us the difference between normal, healthy antibody and clone that are made from the plasma cells that we see in MGUS, smoldering, and multiple myeloma…once we identify that there’s a plasma cell disorder, then that can set in place a workup, depending on the amount of clonal, monoclonal, M-protein that we see.

So, sometimes that involves bone imaging. Historically that was a skeletal survey where we took lots of X-rays of your body. Now we have other tests we use. PET scans, CT scans, whole body MRIs. Sometimes it depends where you’re getting your treatment, and also it depends a little bit on your doctor’s degree of suspicion. 

 Lisa Hatfield:

So my myeloma was diagnosed using a scan. An MRI was done of my spine, and that’s when my doctor saw the plasmacytoma in my spine. Further testing indicated that I had something called kappa light chain myeloma. So a lot of patients will have regular tests done, blood work that may show anemia. I think if anybody has an indication of myeloma, further testing should be looked at. There’s something called a light chain assay, a normal CBC, a metabolic panel, a light chain assay was critical in my case, because all my protein levels were coming back normal. Some patients have an elevated level of protein in their blood. Mine was normal. So having all the standard blood work plus having the light chain assay done.

And then really the gold standard for diagnosing myeloma, unfortunately, right now is a bone marrow biopsy. It’s not fun. It’s not horrible. So for patients who are anticipating that, you can get through it. It will be okay. That is the gold standard for diagnosing the myeloma,  the type of myeloma, and then any cytogenetics related to that myeloma that help guide the therapy that you might be getting going forward.

What Can I Expect During a Bone Marrow Biopsy?

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What Can I Expect During a Bone Marrow Biopsy? from Patient Empowerment Network on Vimeo.

Myeloma patient advocates Lisa and Sujata share their experiences with bone marrow biopsies – what to expect and how to prepare.

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Transcript:

Sujata Dutta:

And then there was one more thing that you spoke… When we started with the conversation, BMB. Let’s talk about BMB the dreaded swear word.  

Lisa Hatfield:

It is next to dex. I think it’s the second. Maybe it’s equal with Dexamethasone, people talk about dex being the worst thing about myeloma, the BMB, the bone marrow biopsy. Yeah. Did you have one? Right when you were diagnosed?  

Sujata Dutta:

Yes, and it wasn’t a pleasant experience. I was obviously, as I mentioned, I had a surgery an emergency surgery, it was pretty… It lasted for six hours and I was wrapped up in all sorts of things, and then I had to have the BMB while I was on an ICU bed, so… Totally not in the best place to start, and it was the first time I was going to have it. So it wasn’t a pleasant experience. It was super painful, they could not sedate me for obvious reasons, because whatever was going on, but post that I had the next BMB, I’ve had a couple… I’m not sure that’s a good thing or a bad thing, the next one, I had it in Mayo and I learned that I could actually be partially sedated and so I wouldn’t feel anything, which was like, Oh my gosh, I thought that was the best discovery mankind had ever made. And ever since then, I’ve always requested for being seated through that process, because otherwise it can be really, really painful, so I don’t know if you want to talk about what the procedure is. I am going to assume some of the folks here have been through this, unfortunately. 

 
Lisa Hatfield:

Yeah, because the bone marrow biopsy is the only way to actually see the myeloma cells, the cancerous plasma cells, it is necessary, it’s also necessary to get it done so they can diagnose the genetic abnormalities, the cytogenetics. But yes, I actually had a little bit different experience. So again, every patient is so different, I prefer not to be sedated because I don’t like sedation, I don’t like the way I feel, I don’t feel good when I have it, so I did have it done and I was… Where I went the first time they didn’t offer sedation, it was, this is 20 minutes, and it wasn’t comfortable.

I will admit that I didn’t like the worst part for me was when they numb the area with lidocaine, they gave you the little shots before they do that, so I’ve had six of them total now, but I’ve had the most recent one. The sixth one I had, they did sedate me and I think it’s conscious sedation, so it’s like you said light sedation, I don’t remember any of it, but I didn’t like it because I had two days of recovery from the anesthesia, so… Yeah, so I think the… 

Going back to somebody who’s maybe anticipating it for two nights straight, I couldn’t sleep, I was so nervous about the bone marrow biopsy, I just thought This is going to be so painful. I had excruciating pain in my spine anyway, ’cause it was collapsing as I was going through, I had radiation first, so the bone marrow biopsy didn’t seem to affect me quite as much the first time, but this last time, it seemed to be a little more uncomfortable, especially afterwards, but from my understanding from the bone marrow biopsy, they go in either with the needle, basically the thick needle or where you go to the Mayo Clinic in Scottsdale uses as a drill, and I guess that’s supposed to be faster, and a lot of people think it’s more comfortable, go into the bone marrow and try to take some of that bone marrow out… The soft part of the bone out, they actually take two different samples, but I think the most, uncomfortable part if you’re not sedated, I think is that vacuum-type feeling, and then there’s like a pop… And that was super uncomfortable. I thought that was probably the worst part of not sure if it’s pain or discomfort or what, but I do remember that looking back though, now, every time I’ve had one, I always say that wasn’t so bad.  

I remember it, but it wasn’t… I don’t remember it being too bad, so what they do is they will collect enough… They usually have a lab person available as they’re to make sure that they have enough of a sample and the right… The right cells and enough of it, so they usually will only go in once I had one where they had to go back in a second time to try to aspirate some more… The bone marrow, they’ll look at that takes a few days to go through the lab and look at that and see what your genetic abnormalities are with the myeloma cells themselves, and what the volume of cancer cells is in your bone marrow.

But yeah, I just remember, either way, if you’re sedated, you don’t feel it at all while it’s happening, if you’re not sedated, you can feel, especially when they’re numbing it up, the lidocaine shots and that stings, it’s a sting three or four times and takes a little time for it to set in, and then that suction that pop, that’s what was the most uncomfortable, and I think that really the most pain that I felt was the bruise-like pain, the couple of days afterwards, they’re not walking, but just sitting on it is bandaged up really…  

Well, you can’t take a shower for a day, but when I would go to sit on it, it just got bruised, but… Yeah, the bone marrow biopsy, nobody looks forward to those… It’s nice to know that there is something in the works, even mass spec testing, which isn’t quite as sensitive… It’s nice to know that there’s something that works, to maybe look at other ways to test for the myeloma. Yeah, not fun. It’s a necessary thing though that when people are diagnosed with multiple myeloma.  

Sujata Dutta:

That’s absolutely the true statement. I don’t like it at all. I am also anxious before I have my… I’ve had four now, so… And every year I’ll have to have one, so I know that that’s a necessity, as you said, I do feel anxious, but I keep telling myself this is needed to assess overall disease involvement and hopefully the results are better than last year, so I kind of… That’s how I sort of create some positive energy around that experience because it’s not a pleasant experience, and as you said, it does hurt for a couple of days after I actually have… Sometimes it goes on for a week that I have, or discomfort, but again, each to his own people might have different experiences, but I think the more we talk about it, the more we hear other people’s experiences, we might just feel like, Hey, mine was not all that bad, I look at her, him, what they’ve gone through and things like that, or even just thinking like… It’s different, it’s nuance.

Everybody goes through different experiences like you prefer not being seated, I prefer being sedated, so it depends on each one’s experiences, but the bottom line is there are options available, everybody understands, it’s a difficult procedure, everybody understands it’s not pleasant, nobody wants to put the pain through that if they had a choice. 

Right now, we don’t have one, so I think just thinking about in a positive way and embracing it, I guess might just help, it helps me, so I’m hoping that it helps others as well, just changing the perspective a little bit.  

Lisa Hatfield:

Yes, so who does your bone marrow biopsies? I’ve been to… Sometimes a nurse practitioner does them and sometimes an RN does mine, and I know some of our local doctors do them, oncologists do them, what type of professional does your bone marrow biopsies?  

Sujata Dutta:

With Mayo, I’ve had it twice there, they have specialists, they have a whole team that does obviously Mayo, they do like MM treatments, like they have 500 patients doing biopsies every year. That’s what I heard. I had mine there too, so it’s a well-oiled machine, they just have departments for every little thing, so that’s different, but even when I do it with my local cancer center, they have a specialized team, so it’s not the nurses, there’s a specialized team. There’s a different procedure.

Again, it’s different to how Mayo does it. When I do it at my cancer center, they actually do a scan before I have a BMB, and to make sure that they’re going in the right place. Which I thought like Wow, that’s great. Just as a second level of precision, but yes, that’s different to Mayo, but it’s always like a specialist doing it for me.  

Lisa Hatfield:

Yeah, and then how often do you have to have those on a regular basis, like annually or just as things change with treatment? 

Sujata Dutta:

Annually. So, only just… Obviously, for my diagnosis I had that and then six months later, and I had a stem cell transplant and I did a BMB prior as well then, a couple of months after I did that again. So that was the only time and it happened more regularly, but since then it’s been like yearly. 

Lisa Hatfield:

Yeah Okay. Yeah, the bone marrow biopsy is interesting because I know a lot of… There’s different ways that they test that and now they have a more sensitive test, so everybody has different..That’s the other part of alphabet soup. Some people have something called flow cytometry or NGF or NGS. So anyway, yeah, it’s kind of interesting that everybody will have different ways of going through that or different experiences, so anybody who has questions, you’re welcome to reach out to me at PEN or any of the other resources that are out there.   

Will Myeloma Patients Need Fewer Biopsies in the Future?

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Will Myeloma Patients Need Fewer Biopsies in the Future? from Patient Empowerment Network on Vimeo.

Is it possible multiple myeloma patients will need fewer biopsies in the future? Dr. Sikander Ailawadhi from the Mayo Clinic explains bone marrow biopsies, myeloma detection, and potential tests in development.

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Transcript:

Lisa Hatfield:

Okay, so for myeloma patients, even though our insurance companies, sometimes we have to argue with them a little bit as if we’re beating down doors to get a bone marrow biopsy, nobody loves those, I’m not sure why insurance companies think we would actually want that. But what do you see in the future, I know there’s talk about mass spectrometry. Every myeloma patient would love to hear the words, you’ll never have to have another bone marrow biopsy.

Do you see a future in that and some of these newer tests that are coming out?

Dr. Sikander Ailawadhi:

Sure, I think that’s absolutely important to know because…yes, that’s the bane of our existence, unfortunately, disease primarily lives inside the bone marrow, so to get the true information…that’s where you go. So there are some tests that are being developed or researched, patients may have heard about what’s being termed, the liquid biopsy or taking a blood sample to identify plasma cells or disease, there’s a lot of research going on around it. But, unfortunately, it has not panned out yet, because by nature, plasma cells do not circulate in the blood, or if they circulate, it’s a very, very small amount, so it’s hard to pick it up from the blood and do the tests on it. But there’s a lot of research going on for it to get the plasma cells, get the FISH testing, and all the genetic testing from the plan.

So stay tuned, hopefully we’ll get in that direction. What you also mentioned, a test that’s been developed and done at Mayo Clinic is what’s called maspect or looking at these proteins, these M-spikes, these light chains, the IgGs, etcetera. Looking at them at a molecular level and separating them based on their weight, because IgG kappa, for example, from one patient may be different from the IgG kappa that came from a different patient, but they can be separated out based on the weight, based on the molecular weight… on the size, and that can sometimes be used that how the test has been developed to use that property to identify and almost catalog and tabulate and follow that patient’s protein, so that we can hopefully collect or detect a recurrence sooner, note a deeper response to the treatment.

And in the future, hopefully use that depth of response and that earlier recurrence as…or earlier detection of the protein as a survivable matter, recurrence. I still think that it’s two different things, one is to look at the protein and note it at a deeper level to know whether the patients responded or relapsing, but so far, if you want to do those rotation testing, the FISH testing, and look at some of the characteristics of the myeloma, unfortunately, we do have to go to the bone marrow, but down the road, I’m hoping that those liquid biopsies and the blood tests will hopefully make it happen.

Lisa Hatfield:

Well, that would be music to my ears, even fewer biopsies would be great, so that would be awesome.

Myeloma Expert Explains Diagnosis and Treatment for Newly Diagnosed Patients

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Myeloma Expert Explains Diagnosis and Treatment for Newly Diagnosed Patients from Patient Empowerment Network on Vimeo.

How can newly diagnosed multiple myeloma patients be oriented to their diagnosis and treatment? Dr. Sikander Ailawadhi from the Mayo Clinic shares key points he explains to patients about myeloma origination, tests, symptoms, treatment, and ongoing care.

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Transcript:

Lisa Hatfield:

So now we’re going to jump into our questions. So, thank you again, Dr. Ailawadhi. So we have a patient asking for newly diagnosed patients, say a patient comes into you, maybe they were sent by their community oncologist or a family practitioner, something…I have myeloma, doesn’t know anything about it. Have even heard of it before. How do you start that conversation? How did you explain myeloma and the treatment and very importantly to the patient, how do you explain the prognosis when you know it’s not curable yet?

Dr. Sikander Ailawadhi:

An extremely important question. And I agree that we should be starting at the beginning, so I think I had the privilege of working at an institution where we tend to spend a lot of face time with the patient, so typically in the outpatient, I have at least about an hour of time blocked is how we’re set up. So at that visit, first of all, I’m hoping that a patient comes in with a caregiver, but if they don’t have a caregiver with them, I start off by asking them, Is there someone they would like us to call during the visit? Because it is always better to have a caregiver or an extra set of ears listening in, and once that has started, then I typically will explain to them literally from what is a plasma cell, what is the role of a normal plasma cell, because that tells us the type of proteins plasma cells produce.

And that leads us to how a plasma cell can become cancerous and lead to multiple myeloma, what are the signs and symptoms of multiple myeloma? What are the markers, these protein markers that come in the blood and are picked up as markers of disease for patients, because again, patients need to know what they’re looking for in the labs that are drawn, so very frequently.

We talked about the role of a bone marrow biopsy, a lot of times it has been done, sometimes it has to be done after that visit, we talk about the genetic mutations in plasma cells that can be seen because that is what helps determine the risk category of standard risk or high risk.

I do offer to patients about discussing the prognosis, again, it’s a good time where we know that the average survival of patients is close to about 8 to 10 years when they look at a general national data, U.S. data, but all the large centers, all of us who focus on myeloma, we have several patients who are living quite a bit in excess of 10 years, so more hopeful time, but it is important to put that prognosis in perspective with high risk or standard risk disease that can be determined based on mutation testing from the plasma cells from the bone marrow, something called the FISH test, part of it is to explain to the patient the prognosis, but other reason is also because sometimes that can determine the type of treatment, and this also importantly tells the patients about their disease much better, so they can be more educated, they can interact with other patients, they can ask the right kind of questions, and they can understand their disease process and follow-up better.

Now, after we have discussed all of this, we start talking about treatment, I can tell you when I talk to a newly diagnosed patient, I will tell them that in my way of thinking their treatment initially is broadly divided into three different discussions during three different visits. The initial visit is talking about any symptom or sign from the myeloma, increased calcium, kidney dysfunction and tumors, how are we going to tackle that? So we will come up with the right “induction regimen.” I really don’t think one-size-fits-all, so based on the patient’s age, comorbidities, other diagnosis or the treatment drugs, family support system, financial situation, there are so many factors that go into it.

We come up with an induction regimen, I’ll tell them that the second component is about controlling all the symptoms and manifestations of the disease, whether that means radiation therapy, bone-strengthening agents, multivitamins, minerals, whatever we need to do as supplements, then we’ll talk about…starting that treatment. What does it involve? Side effects, we will set that path, you will notice I have not even talked about transplant, and I’ll tell the patients that only thing I mentioned to patients in that first planning, visitors and down the road, we will be talking about transplant. Today is not the time, because in my experience at the moment, we start talking about bone matter, transplant tenants, everything was out the window. That’s what patients think about…and I don’t want them to do that.

The second part of my discussion comes around a month or so into the treatment, because by then we want to start seeing some responses, some symptoms turning around, but that month two to three is very importantly the time to rebuild things. Does the patient need to go to physical therapy, pain control? Supportive or palliative care services? Lipoblasty or tuboplasty to strengthen their spine. I mentioned physical therapy, I’ll say it again, because I really think that’s very, very, very important for controlling the pain and supporting the movement and quality of life, managing any side effects, making sure that the dose is correct, do we need to tweak the doses, etcetera. And at that visit is tell them that, “Okay, very soon we will be talking about…we’ll be going into the details of a transplant, we will be passing along more information to you. But at your next visit, which would be probably at that two- to three-month mark, two- to three-cycle mark,” is when I will really sit and talk to them about our transplant…

So for me, the main transplant discussion comes on that cycle to recycle the two to three seconds have already got in patients feeling better, they are much more receptive for the next phase of treatment, which is when we talk about transplant, that’s how I do it, typically. And then we’ll explain a lot about what this transplant need…what does it involve? Caregiver needs a supportive care, vital organ testing, bone marrow biopsy, response depth, MRD, all of that.

So for me, this is kind of the journey that a patient, newly diagnosed patient goes through for the first few months, then their transplant, then their maintenance and hopefully good long disease control state.

Lisa Hatfield:

Great, how often do you expect a patient will have to have appointments during that…talk about the induction phase, the first month to three months, how often do you think they will have appointments, whether it’s for treatment or to come see you? What should they expect that way?

Dr. Sikander Ailawadhi: 

Sure, so the regimens that we typically use in myeloma, some of them, the drugs are given twice a week, a majority of the way we give the drugs, it’s once a week, so one to two times a week would be visits, we do the labs for the first month, we will do sometimes every week, but by the time the patient has gone to the second or third cycle, once every two to four weeks, labs are reasonable because by then things have stabilized, but the treatment still would, I think the once or twice every week depending upon the regimen that they have, we don’t typically see the patient for a clinic appointment every time, but a lot of centers do, so every time the patient comes, as I said, one to two times a week, typically that translates to about four visits in every three to four weeks they coming on the cycle, some regiments are three weeks regiments, some regiments are four week regiments, etcetera.

So patients come, I can say that the first one to two months are most intensive for follow-up for labs, we wanna make sure everything’s been fine, been start reading the treatment, they are not having side effects it and etcetera, and then things can be spaced out a little bit for the next couple of months before we go into the transplant thing, if the patient is going for transplant.

What Is MRD-Positive Acute Myeloid Leukemia?

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What Is MRD-Positive Acute Myeloid Leukemia? from Patient Empowerment Network on Vimeo.

What do acute myeloid leukemia (AML) patients need to know about MRD-positive AML? Dr. Catherine Lai from Penn Medicine discusses minimal residual disease (MRD). Learn about the meaning of MRD, complete remission, and MRD testing methods.

[ACT]IVATION TIP from Dr. Lai: “Ask if MRD testing can be done on your bone marrow biopsy at the time at which you or after you’ve had your chemotherapy.” 

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Transcript: 

Art:

Dr. Lai, what is MRD-positive AML?

Dr. Catherine Lai:

So, that’s a really good question. And to answer that question, I’m going to actually answer a different question, which is, What is the definition of complete remission? So the definition of complete remission is when we do a bone marrow biopsy, and we have less than 5 percent of those blasts or leukemia cells in the bone marrow, and that is also in the setting of a relatively normal immune system or normal other blood counts have improved, so that your neutrophil count is above 1,000, and your platelet count is above 100,000. So, MRD, which stands for measurable residual disease, means that you’re in complete remission, so you have less than 5 percent blasts, but you’re more than zero.

And we, in general, when patients who are MRD-positive, we know that if you were to do nothing, that those patients have a high likelihood of relapse. We know for the patients who are going to transplant, if you’re MRD-positive before transplant, those patients also have a higher likelihood of relapsing after transplant. And so we tend to monitor it if possible…the tricky thing is, is that there is not a standard way to measure MRD testing as of yet, the common approaches are right now are with either flow cytometry or with PCR or next-generation sequencing, if you have a particular targeted mutation that we can follow.

So your activation from that standpoint is to ask if MRD testing can be done on your bone marrow biopsy at the time at which you or after you’ve had your chemotherapy. 

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What Experts Are Learning About the Hereditary Risk of Myeloma

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What Experts Are Learning About the Hereditary Risk of Myeloma from Patient Empowerment Network on Vimeo.

Myeloma experts Dr. Irene Ghobrial and Dr. Betsy O’Donnell share research updates on predicting the risk of developing myeloma, both from inherited genetics as well as environmental factors.

Dr. Irene Ghobrial is Director of the Clinical Investigator Research Program at Dana-Farber Cancer Institute and Professor of Medicine at Harvard Medical School. Learn more about Dr. Ghobrial.

Dr. Betsy O’Donnell is Assistant Professor of Medicine at the Dana-Farber Cancer Institute specializing in Plasma Cell Disorders.

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Transcript:

Katherine Banwell:

Is there any research on predicting hereditary risk of myeloma? 

Dr. Irene Ghobrial:

Yes, so part of the PROMISE study is trying to understand what is the risk of developing myeloma? So, we’re recruiting people who are either African American, because they have a three times higher chance of developing myeloma compared to the white population, as well as people who have a first degree family member with a plasma cell disorder. 

Or even any blood cancer because now we see that CLL and lymphoma and myeloma can actually come together. And we’re now doing something called whole genome sequencing of all of the DNA that you inherit from Mom or Dad called the germ line. Basically, we try to see did you inherit the gene from Mom or Dad that increases your risk to myeloma? 

Now, it’s not as high as something like BRCA1 mutation or 2 mutation, where if you have that, you’re high, high chance of developing breast cancer or ovarian cancer and so on. We probably have several factors that need to be put together. You inherit something and then the environment adds something, and then as we get older, we get the hit. 

Or you inherit something that changes your immune system, and that allows the plasma cells to start proliferating faster because they are reacting as an immune cell, and that allows the hit of myeloma to happen. And we’re working on that, and we would really encourage everyone who has a relative with myeloma, sign up on PROMISE study. 

Because that’s how we can get the answer. That’s how we can say it’s not because you are an African American or you’re white. It’s not because you have a first-degree family member or not. It’s because of this gene. So, taking away race, taking away all of those factors, taking away age and trying to go back to the biology. Is it a certain gene, is it the certain immune cell that makes us go to that risk? 

And then Dr. O’Donnell is really taking it to the next level. Now what is in the macro environment? So, we talked about what we inherit, but it’s like nurture and nature, right? So, nature is the genetics and then nurture, what do we eat? What do we change? Obesity, health, all of those things change our inflammation level and change our ability to basically prevent those myeloma cells from starting or from continuing to progress. And she can potentially talk about her work on microbiome, on the tiny bacteria that are in our body from what we eat. So, maybe, Betsy? 

Katherine Banwell:

Okay.  

Dr. Betsy O’Donnell:

Absolutely. Yes, so one of the things that particularly interests me is the effect of lifestyle on our risk of getting cancer. 

And specifically within plasma cell disorders, and I think there have been other cancers, breast cancer and colon cancer, where they’re a couple steps ahead of us just in understanding the influence of things like obesity and the gut microbiome. So, the specific bacteria that are within your intestinal tract. It makes a lot of sense in colon cancer, but we think that that’s not limited to diseases like that. We actually think that these microbiomes, which are influenced by the foods that you eat, may have a relationship with your immune system. And remember, myeloma is a cancer of the immune system. 

So, we’re all working together on our team here on a very scientific level to understand lifestyle influences and how they may cause or potentiate multiple myeloma. And so we’re excited to kind of bring this piece together. When you think about the spectrum of plasma cell disorders, not everybody goes on to myeloma, but a lot of people sit in these early precursor diseases, MGUS and early smoldering.  

And so are there things that people can do for themselves that might influence their gut microbiome, or if it’s the amount of body fat that we have that’s very involved in cell signaling? Can we modify those things, exercise more potentially, that will decrease our body inflammation levels or alter those pathways that have been set in process that, by altering them, may decrease the risk of going on to more advanced plasma cell disorders? 

Katherine Banwell:

That’s such great information.  

How Is Myeloma Treatment Response Measured?

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How Is Myeloma Treatment Response Measured? from Patient Empowerment Network on Vimeo.

Myeloma expert Dr. Betsy O’Donnell reviews the terms that define myeloma treatment response, such as complete remission (CR) and partial remission (PR). Dr. O’Donnell goes on to discuss the new tools that are being used to monitor treatment effectiveness, including MRD (minimal residual disease).

Dr. Betsy O’Donnell is Assistant Professor of Medicine at the Dana-Farber Cancer Institute specializing in Plasma Cell Disorders.

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Transcript:

Katherine Banwell:

Dr. O’Donnell, Alex wrote in with this question. “What is the difference between a complete response, VGPR, and PR as it applies to prognosis and maintenance after an autologous stem cell transplant?” And before you answer the question, would you define VGPR and PR for us?   

Dr. Betsy O’Donnell:

Sure. So, we have different criteria that help us understand how well a drug is working, and they’re uniformly used across clinical trials so that we’re all speaking the same language. And so we talk about a PR, a VGPR, and a CR. So, a CR is a complete response, which is 100 percent of that monoclonal protein that we initially detected is gone. We can’t measure it. Or if you have an elevated light chain, which is another piece of the protein, that has gone back down to normal. 

Taking that a step further, astringent CR is if we do a bone marrow biopsy and we can’t find any cancer plasma cells in there. A VGPR is where we see a 90 percent reduction in the amount of protein we can measure, and a PR is anything over – a partial response is anything over 50 percent. 

So, that’s a language we speak really just so that when we’re interpreting clinical trials, we all are using the same criteria. 

And so these are different terms that classify it. If the example that you gave, someone’s had a transplant, what would typically happen 100 days after that transplant is a patient would restart maintenance therapy.   

The classic maintenance is just lenalidomide (Revlimid), which is the pill that they were probably taking before that. And there’s a lot of controversy now but no good answers about changing therapy after a transplant, if you haven’t received a deep response. 

What we do know is that after a transplant, when someone goes on lenalidomide maintenance, they continue to respond. So, the greatest depth of response is not necessarily achieved in the induction phase or right immediately after transplant, but over time on maintenance. 

There’s another tool that we’re now using and incorporating, both in terms of how we assess treatment but also potentially in how we modify treatment, which is something called minimal residual disease, MRD, which goes a step beyond. When people have astringent CR, a CR, looking for really just traces of the disease on a molecular level.  

And all of those help us understand how well the patient has responded and how long that remission might last, but they’re not definitive in terms of how we should adjust treatment based on those right now. 

How Is Relapsed or Refractory Myeloma Managed?

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How Is Relapsed or Refractory Myeloma Managed? from Patient Empowerment Network on Vimeo.

Drs. Irene Ghobrial and Betsy O’Donnell discuss next steps if myeloma relapse occurs or the disease doesn’t respond to treatment. The experts review the necessary tests following a myeloma relapse and how a treatment choice is determined.

Dr. Irene Ghobrial is Director of the Clinical Investigator Research Program at Dana-Farber Cancer Institute and Professor of Medicine at Harvard Medical School. Learn more about Dr. Ghobrial.

Dr. Betsy O’Donnell is Assistant Professor of Medicine at the Dana-Farber Cancer Institute specializing in Plasma Cell Disorders. 

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Transcript:

Katherine Banwell:

We know that relapse can happen. Dr. Ghobrial, how common is relapsed or refractory disease? 

Dr. Irene Ghobrial:

Yes, and, fortunately, we do have amazing remissions. We have very long remissions. Many people are living 10 years, 15 years and longer, which as Dr. Nadeem said, was not something we knew about years ago. I trained 20 years ago as a fellow, and myeloma was a survival of three to five years.  

We’ve come a long way, but we want to change that even better. We want a cure. We want to tell a patient, “You are done. You’re cured,” and we will not stop until that happens. So, when people have a progression again or relapse, then we want to consider what is the next available option. What is the best option to give them yet one more long, long remission? We are failing sometimes, and that’s because the disease is so bad, the biology of the disease is so bad, and the drugs that we’re using may not be the best drugs for that patient. 

And that’s why we need to understand better the biology and pick the right drugs for the right patient up front as much as we can, and also think about earlier treatment. We were just saying we probably have amazing drugs, but we’re waiting way too long until people have almost metastatic disease, and then we treat them. Why not think of an earlier interception when the disease is less mutated, when you have less cancer cells, a better immune system, and use your best drugs then? And hopefully we will achieve cure in many of those patients. 

Katherine Banwell:

What testing takes place after a relapse? Is it different than what has happened before, the testing that was done before? 

Dr. Irene Ghobrial:

No, the same tests exactly. We sort of say it’s restaging. We check everything again – the bone marrow biopsy, the FISH, because you may now develop a 17p that was probably there, but the very, very small number of cells that you cannot detect, and now it grows because of something called chrono selection. The drugs kill the sensitive cells, but they don’t kill the bad cells, and that’s how we can get all of those changes and mutations.  

Katherine Banwell:

Okay. Dr. O’Donnell, is the process for choosing treatment different for a relapsed or refractory patient? 

Dr. Irene Ghobrial:

So, that’s a great question. Yes, it can be. I mean, again, it always depends on how the person is doing at that time. It also depends, there are certain drugs that may not be approved in the front lines, something like venetoclax (Venclexta). If a person has a specific translocation, this 11;14, that’s something that we would like it in a second-line setting, for example. 

Usually one of the big questions people ask is if you’re on a specific class of drugs, should you change classes? So, this example is if you’re on lenalidomide (Revlimid), and you have evidence that your disease is progressing, should you change to a different type of drug? A proteasome inhibitor, monoclonal antibody? Should that include one of the same classes of drug, like pomalidomide (Pomalyst), which is the next generation? 

So, there are a lot of different factors that we consider. The number of drugs. So, you know, as Dr. Nadeem said, historically – there’s a lot of history in myeloma therapy, and it’s been an evolution, and so now we’ve had people who were treated with the three-drug combination that are starting, after many years, to progress. So, we might choose a monoclonal antibody for those patients because it wasn’t available at the time they were diagnosed. Versus patients now, who are typically on a four-drug regimen that includes those monoclonal antibodies and all the different classes of drugs. 

We’re looking at different and, if available, novel agents to put those patients on. And again, I think Dr. Nadeem made a really important point that I want to underscore, which is that very often our best therapies are available in clinical trials. And so when and if there is the opportunity to be on a clinical trial, you may be then able to get something that would not otherwise be available to you. So, I encourage people to always have an open mind to being on a clinical trial at any stage in their disease treatment. 

Katherine Banwell:

What therapies are available for relapse or refractory disease? Are they different than other therapies? 

Dr. Betsy O’Donnell:

You know, so that’s a great question. So, yes and no. I highlighted one example that might be a little bit different, but in general, we’re very fortunate that we have multiple classes of drugs, meaning we have different drugs that work differently to kill your myeloma cells. And as Dr. Nadeem said earlier, we use those in combinations to increase the effectiveness of those medicines. Within each class we have a variety of drugs. 

You used the example of immunomodulators, and show that we have three different of those type of drugs.   

We have two different proteasome inhibitors. Beyond that, we have other classes of drugs that were mentioned. We have monoclonal antibodies, immunotherapies.  

And so very often we make, it’s almost like a mix where we pick what we think is going to be most effective, sometimes based on cytogenetics. The biology. Sometimes based on patient selection. What are their other medical problems, what are their current issues? And we pick the combination that we feel is going to be most effective from the different classes of drugs that we have together, usually trying to use multiple drugs in combination. 

Katherine Banwell:

Well, what newer therapies are available or in development for refractory and relapsed disease? 

Dr. Betsy O’Donnell:

So, I think that the greatest interest that I think we’re all most excited about is the immunotherapy space, and I think we’ve seen – for myeloma, we see that this is a relapsing and remitting disease. 

And what’s been so exciting about CAR-T cells and the bispecific antibodies is that in patients who have had, on average, five relapses, we’re seeing tremendous results. So, complete remissions or very good partial remissions that last. In fact, can last up to two years, on average, with one of our CAR T-cell products. 

So, this is really exciting, especially when you compare to what historically has been out there for patients who have had that many relapses. And just as Dr. Nadeem said, the way that drugs enter, they enter from the relapse refractory setting, ethically that’s what makes the most sense, and they march their way forward. And so that process is happening right now as we speak, and I think like Dr. Ghobrial talked about, is the importance in early disease of thinking about using these really exciting therapies in patients who have lower burdens of disease with a goal of cure. 

And so I think all of us on this call are committed to one thing, and that is curing multiple myeloma, and even the precursors that lead up to it so that patients never have to go through the process of years and years of therapy. And so I think we’re very excited about what immunotherapy might be able to offer as we move forward in myeloma treatment. 

How Are Patients on Myeloma Maintenance Therapy Monitored?

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How Are Patients on Myeloma Maintenance Therapy Monitored? from Patient Empowerment Network on Vimeo.

Myeloma specialist Dr. Omar Nadeem explains how a follow-up care and monitoring plan for patients on maintenance therapy is determined.

Dr. Omar Nadeem is the Clinical Director of the Myeloma Immune Effector Cell Therapy Program and Associate Director of the Multiple Myeloma Clinical Research Program at the Dana-Farber Cancer Institute. Learn more about Dr. Nadeem.

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Transcript:

Katherine Banwell:

Dr. Nadeem, many patients are on maintenance therapy following active treatment. So, how is a patient on maintenance therapy monitored? 

Dr. Omar Nadeem:

Yes, so, majority of the time just with blood work. We don’t necessarily need to do a lot of bone marrow biopsies and PET scans for a majority of patients that are on maintenance therapy unless we’re either worried about their blood markers or some symptoms. Generally speaking, any time – it depends on what maintenance therapy they’re on, of course. If they’re just on lenalidomide (Revlimid), which is the most commonly used maintenance therapy, a lot of times we check in with them every one to three months. 

Depending on how their disease status is and how they’ve been doing and whether there’s any side effects that we need to worry about. So, they still have to see their doctors, still have to get the blood work. Usually you can get away with having it done no more than once a month or so, unless they are on other medications along with Revlimid, where we then have to check in with them a little bit more frequently. 

And some of that changes, so patients can be on maintenance therapy for five plus years, and we get a very good sense of how they are doing and kind of how their disease is doing, and we can kind of be a moving target in terms of the frequency of the follow-ups. 

How Is Research Advancing Myeloma Treatment and Care?

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How Is Research Advancing Myeloma Treatment and Care? from Patient Empowerment Network on Vimeo.

A panel of myeloma experts, including Drs. Omar Nadeem, Irene Ghobrial, and Betsy O’Donnell, discuss how clinical trials advance myeloma research and share an update on promising therapies in development.

Dr. Omar Nadeem is the Clinical Director of the Myeloma Immune Effector Cell Therapy Program and Associate Director of the Multiple Myeloma Clinical Research Program at the Dana-Farber Cancer Institute. Learn more about Dr. Nadeem.

Dr. Irene Ghobrial is Director of the Clinical Investigator Research Program at Dana-Farber Cancer Institute and Professor of Medicine at Harvard Medical School. Learn more about Dr. Ghobrial.

Dr. Betsy O’Donnell is Assistant Professor of Medicine at the Dana-Farber Cancer Institute specializing in Plasma Cell Disorders. 

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Transcript:

Katherine Banwell:

Where do clinical trials fit into a patient’s treatment plan? 

Dr. Omar Nadeem:

Yes. So, clinical trials as a term, a lot of times patients have a lot of questions about what that means. There’s a lot of misconceptions, I would say.  

Sometimes patients think they will get either a placebo and they won’t get the adequate treatment, or that they may not get the right treatment, right, because they’re taking a chance going on a clinical trial. It’s actually the opposite. So, all the trials are really designed to improve upon what we already know works in a particular disease, right? So, when we think about trials let’s say in relapsed myeloma, where the patient has already had some of the approved therapies, we’re looking at the most promising new therapies that have shown efficacy either in the lab or first in human studies and then moving them through the different phases and studying them in more and more patients.  

And that’s how all these drugs get started, right? So, they all get started at that point and then make their way to earlier lines of therapy.  

Then you’re trying to answer different questions as part of clinical trials. So, which one of these therapies can I combine, for example. Which ones can I omit, which ones – so, they’re all sort of getting the standard therapy and getting something either added on top of it or removed, depending on what the question that we’re asking. 

And then in the world that we currently live in with precursor plasma cell disorders, as Dr. Ghobrial mentioned, we have lots of patients that are at high risk of developing multiple myeloma in their lifetime, and that could be in a few years to a decade. And a lot of these therapies are so effective, and we’re now trying to really study some of these rationally in that patient population, so that’s a very different clinical trial, for example, than what I described earlier.  

So, it really depends on what you’re trying to achieve and where you are in the phase of your disease. 

Katherine Banwell:

This next question is open to all of you. Are there therapies in development that are showing promise for patients with myeloma? Dr. O’Donnell, let’s start with you.  

Dr. Betsy O’Donnell:

Yes. So, I think we are so fortunate in multiple myeloma to have so much interest in our disease and so many great drugs developed. So, as Dr. Nadeem was discussing, CAR-T cells are an immunotherapy, the ones that are approved now, we actually are fortunate to have two CAR-T cells approved, target something very specific called B-cell maturation antigen.  

We’re now seeing the next generation where we’re looking at other targets on the same cancer cell, that plasma cell, so those are evolving. 

Same thing is true in the bispecific antibody space. Again, those target BCMA now, but we have newer bispecifics who look at alternate targets, and really what this does is it gives us different ways of approaching the cancer cell, particularly as you relapse through disease.  

Dr. Irene Ghobrial:

I would probably say we’re also getting into targeted therapies and more of personalized, so if you have an 11;14 translocation, venetoclax (Venclexta) would be an amazing drug for that. And the more we can say my own personal myeloma, what’s the best treatment for me, that’s how we’re trying to do it. So, it may not be exactly precision medicine, but we’re getting closer and closer to precision medicine of my myeloma, my specific drugs. And even if people have a 17p deletion, then we would say let’s think of that immunotherapy.  

It is truly a renaissance for us, and we’re starting to get into trispecifics, into off-the-shelf CAR-T, into so many new things. Into two different antigens that are expressed for the CAR-Ts. I mean, we are really beginning the era of immunotherapy, and we’re excited to see how much we can go into that because it will completely change myeloma, and hopefully we will cure many patients. We think we have already amazing drugs. It’s a matter of when to use them and who is the right person for this right drug. 

Katherine:

What are you hopeful about the future of care for myeloma patients? Dr. Ghobrial, do you want to start? 

Dr. Irene Ghobrial:

I’m hopeful that we truly cure myeloma, and no one should ever develop end organ damage. 

We should identify it early and treat it early, and no one should ever come in being diagnosed with multiple myeloma. 

Katherine Banwell:

Okay. Dr. Nadeem? 

Dr. Omar Nadeem:

Yes, I think I definitely agree with what Irene said, and really having a more thoughtful approach to each individual myeloma patient. As I mentioned earlier, we have so many available therapies. I want to be able to know exactly which patients need which path in terms of treatment, and which ones we can maybe de-escalate therapy, right? So, thinking about which patients do well and maybe can get away with not being on continuous therapy, and those that absolutely need it. Identifying them better to give them the best therapy. 

Katherine Banwell:

Dr. O’Donnell, do you have anything to add? 

Dr. Betsy O’Donnell:

I think we all share a common goal, which is cure, and for those who we can’t cure yet, I think really working on making the experience as good as it possibly can be and focusing on the factors that we can control and optimizing those, both for patients and their caregivers who are in this journey together with the patient.  

What Are Currently Available Myeloma Treatments?

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What Are Currently Available Myeloma Treatments? from Patient Empowerment Network on Vimeo.

Dr. Omar Nadeem reviews myeloma treatment classes, including immunomodulatory therapies, proteasome inhibitors, and monoclonal antibodies. Dr. Nadeem also discusses how combining these therapies has boosted the effectiveness of myeloma treatment.

Dr. Omar Nadeem is the Clinical Director of the Myeloma Immune Effector Cell Therapy Program and Associate Director of the Multiple Myeloma Clinical Research Program at the Dana-Farber Cancer Institute. Learn more about Dr. Nadeem.

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How Is Research Advancing Myeloma Treatment and Care?

Transcript:

Katherine Banwell:

Dr. Nadeem, what types of myeloma treatment classes are currently available?  

Dr. Omar Nadeem:

Yes. So, we started over three decades ago plus with just having basically steroid medications and some older chemotherapy drugs that weren’t very targeted at all, and that was basically all we had up until about a little over 20 years ago, where immunomodulatory drugs were first discovered to be effective in multiple myeloma, and that included thalidomide (Contergan or Thalomid) and now a commonly used agent called lenalidomide, or Revlimid.  

After that, we had a next class of medications approved called proteasome inhibitors that work differently than the immunomodulatory drugs, and then we combined all of these therapies about a decade plus ago and showed that that was better than anything else that we were doing before that. So, combining the steroids with the immunomodulatory drugs and proteasome inhibitors became the standard of care. 

And then we had the next class of drugs approved in 2015 called monoclonal antibodies, and that’s the first time we have monoclonal antibodies approved for myeloma, and it first started in patients that had relapsed myeloma, and then they made it all the way up to front line therapy with a drug in particular called daratumumab (Darzalex).  

And now what we’re going is entering an era of combining all four of these therapies, just like we did 10 years ago with three drugs, and showing that combining four drugs is actually better than three. And the important thing there is that it’s not necessarily adding cumulative toxicity. These are targeted therapies; they all work differently, but they all work really well together. So, now combining these agents has allowed us to really treat the disease effectively and allow for patients to tolerate the therapies.  

And then over the last couple of years, we’ve now entered kind of the next renaissance in myeloma where you have immunotherapies, and these are sort of true immunotherapies, in some cases taking the patient’s own T cells and then genetically modifying them to recognize myeloma cells and putting them back into patients. This is called CAR T-cell therapy, and that’s now approved for patients with multiple myeloma.  

And that again, just like the previous drug, sits in patients that have – you know, at a space where patients have had multiple relapses. But we’re now studying that earlier and earlier, and that along with another class of drugs called bispecific antibodies that also use your T cells via a different mechanism. A lot of exciting things going on, and we keep adding to the available agents for this disease.  

Understanding Personalized Medicine for Myeloma

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Understanding Personalized Medicine for Myeloma from Patient Empowerment Network on Vimeo.

Myeloma experts Dr. Omar Nadeem and Dr. Betsy O’Donnell discuss the personalized approach to treating myeloma and the factors that are considered when making care decisions.

Dr. Omar Nadeem is the Clinical Director of the Myeloma Immune Effector Cell Therapy Program and Associate Director of the Multiple Myeloma Clinical Research Program at the Dana-Farber Cancer Institute. Learn more about Dr. Nadeem.

Dr. Betsy O’Donnell is Assistant Professor of Medicine at the Dana-Farber Cancer Institute specializing in Plasma Cell Disorders.

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Transcript:

Katherine Banwell:

Dr. Nadeem, as we begin our treatment discussion, would you define personalized medicine as it relates to myeloma care? 

Dr. Omar Nadeem:

Yes. I think we’re getting better and better at really having a personalized treatment plan for each individual patient with multiple myeloma. I think Dr. O’Donnell defined before, we are identifying some of the markers where we have targeted therapy for, and we hope with time we’ll discover more and more targets that can truly lead to personalized medicine for individual patients. 

Right now, though, we have a lot of approved therapies for multiple myeloma, and that list is getting longer and longer basically every month, it seems, nowadays. So, when we have so many tools in our toolkit, we then have to figure out, well, which strategy works for which patient? And the fact that we have effective therapies, we’re able to tailor how much of one particular therapy a patient may benefit from. So, some of the decisions that come into play is which medication should I combine for this patient which will lead to obviously disease eradication? 

And then also, how much do I need to intensify that treatment? Do we need to think about doing a stem cell transplant or not? Yes or no?  

There are lot of pros and cons, right? So, it’s a very personalized decision that we have, looking at the disease factors, but also a lot of personal factors because transplant interrupts life, and then we have to make sure that that fits with that particular patient’s lifestyle.  

And then we talk about maintenance therapy. You know, that’s the therapy that is designed to kind of keep the disease away usually for many, many years for the majority of patients.   

But what does that look like, right? Does that include just pills? Is it going to be shots plus pills? Is it going to be a combination, etcetera? So, we have all the discussions at each phase of myeloma, and we discuss with them about what the pros and cons are and how that may fit into their particular lifestyle. 

Katherine Banwell:

Dr. O’Donnell, what factors do you consider when choosing a treatment approach? 

Dr. Betsy O’Donnell:

So, I think you’ve heard from all of us that we really try to have an individualized approach. When we’re talking about multiple myeloma, one of the main factors that I think about is really kind of the overall wellness of the patient. Historically, we had different categories of transplant eligible, transplant ineligible. 

And so that can influence some of the decisions. Really it comes down to what is it the person’s performance does? How well are they doing in their day-to-day life? And that really can dictate the intensity of the therapy. We know that age is just a number, it really is, so there are factors beyond that. What other medical problems do people have? What are the specifics of how well their kidneys are working? 

And so the biggest thing that we can work with is the dose. In fact, we’ve had work that shows that using lower doses from the get-go in older patients allows almost identical outcomes, but really gives patients a tailored dose to where they are at that juncture in their life.  

And so remember, myeloma is much more like a marathon, and so you have to set out at a pace that can be sustained. We treat people continuously. There’s an induction phase where we use a multiple drug combination, but beyond that, as Dr. Nadeem just said, they go on to maintenance, and that maintenance is indefinite. And so you have to set out at a pace or at a dose that you can sustain. 

Different medications have different toxicity profiles, so if someone had, let’s say, cardiac or heart issues, we might steer away from some medications that may exacerbate those. So, every decision is individualized. It’s based on who the patient is, where they are in their life, what other medical problems they have, and what we think they will do best with over time, not just in a short timeframe.