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interviewer: For patients that were just diagnosed with multiple myeloma or have had a recurrence of the cancer, receiving the treatment that's appropriate for your situation requires an expert.

Dr. Aman Godara from Huntsman Cancer Institute is that expert. He's an expert at diagnosing and treating multiple myeloma, and we're going to get to some of those treatments and some information about clinical trials. But first, Dr. Godara, some context, what is multiple myeloma?

Dr. Godara: So multiple myeloma is a type of blood cancer, which occurs from the proliferation of plasma cells that are present in the bone marrow.

So patients who have multiple myeloma can have several complications as a result of this cancer. These complications usually involve weakening of the bones that can lead to fractures. These complications can cause low blood counts, high calcium levels, and sometimes can also affect the kidneys of patients who have multiple myeloma.

interviewer: And how does a person kind of come to realize that they have it? Are there some symptoms or signs that they notice?

Dr. Godara: Patients who are newly diagnosed with multiple myeloma, the way this disease comes to light is that these patients can have fractures very easily. So we see patients who have had a fracture recently and have a lesion that was weakening the bone there, a tumor that was weakening the bone there, that resulted in that fracture.

A lot of times, patients have low blood counts and when the testing is done to identify what the cause for the low blood counts is, that can also reveal a presence of multiple myeloma. This type of cancer produces a protein that we call the monoclonal protein that can be detectable in the blood or urine of the patients who have multiple myeloma.

And sometimes patients would also have kidney failure, and that's another population of patients when patients have kidney failure that we don't have a good explanation for. Those patients are also looked out for this disease to make sure that they don't have multiple myeloma.

interviewer: So a person would go to their primary care physician or perhaps an urgent care or emergency room because they fractured a bone. What are some of those other types of symptoms that have taken them to that first step?

Dr. Godara: So, a lot of times, patients have gone to an emergency department or to an urgent care center because they just had a fracture. And whenever patients have a fracture, they will have some imaging done of their bones, whether that is an X-ray, whether that's a CAT scan, and those things can also identify the tumors, the kind of weakening that this kind of cancer can do to the bones.

A lot of times patients end up into the hospital because they have very low blood counts, and that's also a sign and symptom of this disease.

interviewer: And how does physically having a low blood count manifest itself?

Dr. Godara: So patients who have low blood counts usually feel that they are getting tired easily with any work that they would normally do in their day-to-day life. Patients who have low blood counts could also have multiple infections one after another, and these infections usually are infections such as pneumonia. Patients who have low blood counts can also have increased bruising over their body. And these are all reasons that would lead to a diagnosis of multiple myeloma in a patient.

interviewer: And as far as the diagnosis goes, if somebody is experiencing these symptoms, they go to their primary care physician or the emergency room in the case of fractures. Is it pretty easy at that point to tell that that's what's causing these types of things when those typical tests are run?

Dr. Godara: Sometimes the answer could be a little bit complex. If somebody has a fracture and you see a tumor in their bone, the first thing that somebody should think about is that is this multiple myeloma?

But when patients have low blood counts or when patients have kidney failure, when they have come to see a doctor or they have come to an emergency department, then the answer is not really very straightforward. In that scenario, we have to look at different possibilities, different diagnoses, and ultimately confirm whether a patient has or does not have multiple myeloma.

interviewer: Tell me about the treatments for multiple myeloma. What are we talking about there?

Dr. Godara: Patients who have multiple myeloma and are just newly diagnosed with it, the way we treat these patients is a combination of three or four medicines together. And we have come a long way in the past 20 years in this regard. Twenty years ago, when patients would be diagnosed with this disease, they would receive chemotherapy as their initial treatment. But now, the treatment has become a lot more focused on the disease and the problem that causes this disease.

So the three or four drug combinations that we usually treat our patients with are medication combinations that work particularly well against this type of cancer. They have side-effects that are predictable and manageable in the hands of the clinician who is treating these patients.

interviewer: And from what I understand, multiple myeloma is not something that's ever cured. So, after a first round of treatments, they might be cancer-free for a while, but eventually, is there going to be a relapse?

Dr. Godara: Once patients are diagnosed with multiple myeloma, they will initially receive a treatment that consists of three or four drugs combined together. And the initial attempt is to control the myeloma and put it into a remission. Once that happens, we have to decide upon the next steps for the patient.

And the next steps depend on how aggressive the myeloma was at that time of diagnosis, whether there were any high-risk features associated with the myeloma, and these are genetic changes usually that accompany the diagnosis of multiple myeloma.

So, based on that decision-making at that point of time, sometimes we choose and recommend our patients to undergo a technique called stem cell transplantation with high-dose chemotherapy, where patients receive a high dose of chemotherapy that otherwise would be toxic to their bone marrow, but in this technique, patients' stem cells are collected before they receive this chemotherapy so that we can overcome the side effect of that chemotherapy on the bone marrow.

And this is a treatment that has been well-established for patients with multiple myeloma for the last 30 years, and we still continue to use it, especially in patients who have any aggressive features associated with their myeloma or have high-risk myeloma when they presented at the time of their diagnosis.

So once patients have received their initial treatment and have received either a stem cell transplant or not, they would still continue some form of maintenance treatment, at least until a few years into their diagnosis. This is to confirm that the myeloma remains in remission and does not come back early.

interviewer: And generally, how long is it before the first remission might come back then?

Dr. Godara: So this will depend a lot on what the initial treatment for the patient was, and it will also depend on the risk-staging of multiple myeloma when it was diagnosed.

On an average, when we talk about a standard patient with multiple myeloma, the time that this disease could take to come back would be somewhere around four to six years after the treatment has been initially started. But patients who have some aggressive features associated with this type of cancer, their myeloma can come back within the first two or three years of their diagnosis.

interviewer: And for that patient that then has had their first or their second remission, what are the treatment protocols at that point? Do you change up the treatment or is it pretty much the same thing just again?

Dr. Godara: So patients who are experiencing their first or second relapse, we make a determination of what their initial treatments were and how long ago were those treatments done.

If there has been a long gap between the time that the patients received those last treatments, we can certainly use those treatment options again in the same combination as they were used initially.

But if a patient experiences a relapse while they are on one of those treatments, then in that case we usually tend to make some switches to their treatment combination and start off with a new regimen for those patients who have relapsed.

interviewer: And there's been a lot of development in those treatments over the past few years. Can you tell me a little bit about that?

Dr. Godara: There has been a lot of development in the field of multiple myeloma. And when we talk about that, we are not just talking about new treatments but more innovative ways of combining these treatments together that have become available in the past few years.

So when a patient is newly diagnosed, as I mentioned earlier, patients could receive a combination of three drugs or four drugs together. So there's been a lot of focus on whether one strategy is superior to another.

And there are certain populations of patients where one strategy has been proven to be superior than the others. So patients who are not very fit when they are diagnosed with this cancer, or are above the age of 70 or 75 years, those patients are not eligible to receive a stem cell transplant usually.

And in that scenario, we have information to the effect that if we use four treatments together, they serve to be better than three treatments together, not just in terms of the duration of response that these patients get out of that particular treatment, but also it can impact survival when we use four treatments together. Patients can have a longer survival compared to when they receive three drugs together.

So that's been one area, one aspect of this disease where there is currently a lot of focus identifying what works better and what combination works better than another.

When patients have relapsed, what makes a difference there is what type of relapse we are talking about. Patients who have had their first or second relapse, we have several different options that we can easily choose from to treat those patients and put the myeloma back into remission.

But one other aspect of this disease is that the way all this progress is happening is through the clinical trials.

There are clinical trials that are focusing on patients who are just diagnosed with multiple myeloma.

There are clinical trials that are focusing on patients who are experiencing their first or second relapse, from the time that they have been diagnosed.

And then we also have a lot of clinical trials focusing on patients who have received multiple different lines of therapy before and are running out of options when they suffer from a future relapse.

So some of the clinical trials that are ongoing right now are not just looking at some innovative treatment combination, but these treatments are innovative by themselves.

So there has been a lot of focus on immunotherapies in treating multiple myeloma. So one of the antibody treatments that we use in these combinations to treat multiple myeloma became available around seven years ago and has been a game-changer for the patients.

And these treatments are particularly focused on targeting the plasma cells that are causing this multiple myeloma, and at the same time, they don't have the toxicities or side-effects that we usually associate with cancer treatment.

Now, in just the last couple of years, we have had also some other immunotherapy treatments where we are harnessing the power of your own immune system to target multiple myeloma. Those treatments have shown us that they have efficacy and they work for patients who have had multiple different lines of therapy. Their toxicities are very unique and very different, but at the same time they are predictable toxicities that we have measures and steps we can take to mitigate that toxicity that comes along with these treatments.

interviewer: So if I'm understanding correctly, somebody who has had multiple myeloma a few years back and then it has come back will have a whole different selection of treatment options possible to them that might have fewer side-effects, might be more effective in treating the disease. Is that accurate?

Dr. Godara: So that's accurate to some extent, because as we start focusing more and more on the disease, and more and more on treatments that are not having any off-target effects, as a result, there is more efficacy and less toxicity.

So one of the questions that we are commonly asked when a patient has experienced a relapse is that when we do start a new treatment, what will be the duration of the treatment? And in this regard, there has been a lot of focus to developing treatments that are just a one-time treatment and do not require any continuous administration.

One of the newer treatments for patients with multiple myeloma is Car T-cell therapy where patients' own immune cells are engineered to fight this cancer. And this treatment is given as a single-dose treatment and has a toxicity that is predictable. It requires administration of this treatment in the hospital, but once the patients are out by a few days or a few weeks from this treatment, we don't anticipate any further toxicity related to this treatment.

Then there are also some similar treatments that are, again, harnessing your immune system to fight the cancer, which require a weekly or every other week administration that requires patients to come in every week or every other week to get these treatments.

But again, these are treatments that usually have toxicities that are more pronounced at the beginning when patients start these treatments, rather than toxicities that continue as long as those patients continue on those treatments.

interviewer: Multiple myeloma is a complicated disease that takes a lot of medical expertise from different specialties to manage. Tell me how, at Huntsman Cancer Institute, you're able to provide that to the patients.

Dr. Godara: So patients who have multiple myeloma usually require a multitude of services. Patients are sometimes sent to see an orthopedic surgeon because they have suffered a fracture. Patients are sometimes sent to a radiation doctor because they have a bone tumor that requires a radiation treatment. And sometimes the effect of this cancer on your wellbeing is so immense that patients have to participate in some wellness programs to get back to where they were before this diagnosis occurred. We provide a multitude of these services under the same roof at Huntsman Cancer institute.

At the same time, all the innovation that's occurring in the field of multiple myeloma, an opportunity to participate in that is through clinical trials. We provide clinical trial options for patients who are not just newly diagnosed with this cancer, but also patients who have had their first, second, or multiple relapses in the past. We give them an opportunity to participate in clinical trials for some of these innovative cancer treatments right at their doorstep.

interviewer: What is the value of somebody getting a second opinion that has had a multiple myeloma diagnosis or has relapsed?

Dr. Godara: So patients who have multiple myeloma, I strongly recommend them to see a specialist for their disease so that not only we can discuss what's the right combination of treatments to start off for their disease, but also patients who have had relapsed myeloma, the opportunity for them is to participate in clinical trials and bring some of these innovative treatments out to the front long before they are available as an option for treatment for these patients.

The ultimate goal here is that we want our patients to live longer, we want to minimize their toxicity, and at the same time maintain a quality of life that patients can enjoy their lives with.

Interviewer: Amyloidosis is a rare and possibly debilitating disease, which affects about 4,000 people a year in the United States. If left untreated, the disease can cause severe organ damage, so early detection is critical. Dr. Aman Godara is an amyloidosis specialist at Huntsman Cancer Institute. Dr. Godara, first of all, what causes this disease?

Dr. Godara: So amyloidosis is a rare and complex disease where a protein misshapes itself, becomes the amyloid protein, and then deposits in different organs of the body causing damage.

Interviewer: So it collects in different organs?

Dr. Godara: Correct.

Interviewer: And for each patient, it could be a different organ. It could manifest itself differently.

Dr. Godara: The type of protein that's behind amyloidosis could affect what type of organ is involved in the body.

Interviewer: And the diagnosis for a lot of patients can be kind of an aha moment because it can manifest in different ways. Somebody could be experiencing some sort of abdominal pain and just really can't track down what it is, and it ends up being amyloidosis. Explain that a little bit more, that aha moment.

Dr. Godara: So the diagnosis of amyloidosis can be very challenging because, as we mentioned, there are several different types of protein that can cause several different manifestations in the body.

So usually, when a patient is being diagnosed with amyloidosis, the diagnosis requires a biopsy of an organ or a tissue in the body that we suspect would be involved with the amyloidosis.

There have been some newer developments in diagnosing amyloidosis, and that's the type of a nuclear scan that we have started using to diagnose a type of amyloidosis that we call as the ATTR amyloidosis.

Depending on the type of organ that's being damaged by the amyloidosis, the symptoms could vary along. If someone's heart is being damaged with amyloidosis, usually patients with heart damage from amyloidosis experience shortness of breath, they experience swelling in their legs, and when they go to see a cardiologist, they are usually identified to have heart failure.

When amyloidosis affects the kidneys, it can cause leakage of protein in the urine, which can manifest itself as a form of urine. Sometimes patients with amyloidosis have involvement of their nerves and that can manifest as painful neuropathy involving their arms or their legs.

Interviewer: So when somebody is experiencing some of those symptoms, they might go to their family doctor, right? And it sounds like this could be a lot of different things. Is it pretty easily misdiagnosed at first?

Dr. Godara: As the diagnosis for amyloidosis is so challenging, misdiagnosis occurs often because the type of symptoms that come along with amyloidosis can occur from other diseases and other conditions.

If a patient is experiencing symptoms of heart failure, that could manifest from a different number of reasons. When patients have kidney dysfunction, that can also occur from a list of different conditions that can damage the kidneys.

So often at the point of care, when these patients are experiencing symptoms that might be related to amyloidosis, the patients end up seeing multiple different types of specialists before they are diagnosed with amyloidosis.

And there are certainly some delays in diagnosis that, on an average, patients take 6 to 12 months to be diagnosed with amyloidosis from the time their symptoms start.

Interviewer: And that's important because time is really important with this diagnosis because the damage to that particular organ keeps occurring.

Dr. Godara: The damage from amyloidosis is progressive damage. So the longer we are taking to diagnose amyloidosis, the more damage would occur in that organ that's being affected by this disease. So timely diagnosis is of utmost importance.

Patients who are diagnosed earlier in the course of disease might have damage to that organ that could be reversible at that point. But ultimately, if we miss a diagnosis, and it takes a really long time for a patient to be diagnosed with amyloidosis, that damage to the kidney or to the heart could end up being an irreversible damage that even treatments would not be able to recover from.

Interviewer: That's really challenging because as a person that has a condition, sometimes you have to go through some multiple diagnoses to figure out what it is. Is there any piece of information that a patient might have that would indicate earlier than later that it is an amyloidosis?

Dr. Godara: So patients who are suspected to have amyloidosis usually require a comprehensive evaluation to identify the type of amyloidosis and to identify the manifestations of it. So the workup depends quite a bit on the type of amyloidosis that we are suspecting.

If we are suspecting lichen amyloidosis, that occurs from the excess of lichens, the first and the foremost test that we perform for those patients are blood and urine testing to identify if they have an excess of lichens, which could ultimately be causing amyloidosis.

If patients have an excess of immunoglobulin lichens in their blood or urine, the next step for those patients is to have a bone marrow biopsy to identify any clone in the bone marrow that might be producing these excess lichens and ultimately the amyloidosis.

The other type of amyloidosis that we commonly see is the ATTR amyloidosis, which occurs off a defect in the transthyretin protein that is being produced by the liver. Patients who have ATTR amyloidosis could either be patients who have developed this type of amyloidosis because of old age or this could also be the type of amyloidosis that runs in the family.

So if we are suspecting a patient with ATTR amyloidosis, and we suspect that they have some cardiac damage from it, there is a nuclear scan of the heart that can help us identify this type of amyloidosis. This scan is called as the PYP scan. Patients who have a more genetic form of ATTR amyloidosis, we have genetic testing that can be done either through a swab or a blood test that can help us identify the hereditary type of ATTR amyloidosis.

Interviewer: How reliable are these tests?

Dr. Godara: When patients undergo evaluation for amyloidosis, the blood and the urine testing usually helps indicate whether or not there is any damage that's occurring to the different organs in the body that we would suspect in a patient with amyloidosis. So they only tell us to a certain extent.

Ultimately, patients would require either a tissue biopsy or an organ biopsy to see that amyloid accumulation happening in that organ to have a confirmation of this type of diagnosis.

Interviewer: Many patients find information on the internet when it comes to this disease that can cause anxiety and apprehension. Why is that?

Dr. Godara: I think the answer to that lies in the complexity of the disease. When patients look up amyloidosis, one thing that they might not know at that time is the type of amyloidosis that we are suspecting that they have.

The workup for amyloidosis, the treatment for amyloidosis, and the prognosis of amyloidosis depends a lot on the type of amyloidosis that they have. So the information on the internet might not be very accurate to the fact to the type of amyloidosis that these patients have. And the generalized information can create a lot of confusion and apprehension.

Interviewer: So somebody could find out they have amyloidosis but not exactly know what kind, go to the internet, start doing some research, and then that can be scary place.

Dr. Godara: I think that's correct. When we see patients who are referred to us for amyloidosis, patients have very limited knowledge as to what this disease entails and why this diagnosis is being suspected. So my job for my patients is to explain to them why the suspicion exists, and what do we need to do to identify whether or not they have amyloidosis.

The information that's available for the patients before they have completed the evaluation could be very generalizable and might not be important to that type of amyloidosis that they have.

Interviewer: And let's talk about treatments for the condition. So you have a positive diagnosis, you know what kind it is, you know what it's impacting, I would imagine that the treatments that you would give depend a lot on the same kinds of things we've talked about up until this point.

Dr. Godara: So as there are so many types of amyloidosis that can inflict damage into the body, the treatment basically depends on the type of amyloidosis. So there have been a lot of developments and a lot of exciting work has been done for patients with amyloidosis in the last few years.

So when we see patients with lichen amyloidosis, just last year, we had a treatment that is specifically developed for patients with lichen amyloidosis that was approved by the FDA. This is a combination of four medications together that not only results in eradication of the clone that causes amyloidosis, but also helps improve the heart, kidneys, or any other organs that might have been damaged as a part of this condition.

So patients who have transthyretin amyloidosis have two different types of treatments available for them. One treatment focuses on stabilizing the transthyretin protein and preventing it from turning into amyloidosis. And the other type of treatment targets the liver and prevents it from producing the transthyretin protein, so that ultimately you cut out the source that would be causing amyloidosis.

So there's been a lot of progress and a lot of other new treatments that are in clinical trials for these two types of amyloidosis. For several other types of amyloidosis, we don't have any treatments available yet.

Interviewer: And for those patients, is it just managing the disease best you can, managing the symptoms? What's the strategy?

Dr. Godara: So patients who have types of amyloidosis that we don't have treatments for, our focus remains on the organs that are afflicted from this disease. We try to support the organs that are damaged as a part of amyloidosis, and sometimes these patients will end up receiving a kidney transplant, or a liver transplant, or a heart transplant depending on what type of organ was damaged, irrespective of whether or not we have any treatments available for that type of amyloidosis.

The first and the foremost thing for patients with amyloidosis is to identify these patients at the earliest, because the sooner we take to diagnose this condition, the sooner we can try to reverse this process.

Delays in diagnosis can ultimately hurt the patient, so we have to create awareness at all levels of our healthcare system to identify these patients who might or might not have amyloidosis so that they undergo the appropriate workup and have a confirmation on whether or not they have this condition.

So we need to create awareness not just at the level of the primary care doctor, but also the specialists that our patients see. And at the same time, we also have to increase the awareness about this rare disease with our patients, so that if they have one of the symptoms that we relate with this condition, our patients can come to us and be evaluated for the suspicion.

The one thing that patients with amyloidosis require is a comprehensive evaluation. So when we suspect amyloidosis in a patient, our patients require a multidisciplinary team to not just help identify whether or not they have amyloidosis, but also once the diagnosis has been confirmed, we can focus not just on the cause of what's causing the amyloidosis but also help support the organs that are damaged as a part of this disease.

So at the Amyloidosis Program at Huntsman Cancer Institute, our patients receive care under a team of specialists that includes representation from cardiology, nephrology, and neurology to provide the best possible care that our patients need.