MM Treatments and Clinical Trials Archives

When it comes to treatment, Multiple Myeloma patients and their care partners have much to consider. There are often many options available, each with advantages and disadvantages. Some people may seek clinical trials, others may have few feasible options. Understanding treatment options, goals, and what to expect are vital to achieving the best possible outcome for you.

More resources for Multiple Myeloma Treatments and Clinical Trials from Patient Empowerment Network.

How Can Myeloma Patients Reduce Infection Risks During Medical Appointments?

How Can Myeloma Patients Reduce Infection Risks During medical appointments from Patient Empowerment Network on Vimeo

How much of a risk are medical appointments for multiple myeloma patients? Myeloma expert Dr. Sarah Holstein explains infection risks of infusion appointments versus clinic visits – and shares how she’s helped to ensure safe visits for her patients.

See More From the Myeloma TelemEDucation Empowerment Resource Center

Related Resources:

 

What Are the Benefits of Telemedicine for Myeloma Patients?

Will Telemedicine Mitigate Financial Toxicity for Myeloma Patients?

How Will the Pandemic Impact Multiple Myeloma Trials? 

 

Transcript:

Dr. Sarah Holstein

So, I think the risk associated with going in to get your blood drawn is probably quite low. All health care providers are going to be masked. The time that is spent getting the blood actually drawn is quite low and generally are in and out. So, for what I’ve tried to do for patients is of course to minimize unnecessary lab draws and if possible, try to coordinate them with other tests that are being done that day or other visits that are being done that day, and the infusion appointments, of course are necessary. But again, I think the risk of going to an infusion appointment is quite low, where I think the risk gets a little bit higher is when you’re sitting in waiting rooms of clinics and some people are slipping their masks off to drink coffee or to do other things, like that. And so, on my end, what I’ve tried to do to reduce risk is to utilize telehealth appointments as much as possible so that patients aren’t spending time in waiting rooms, but again, some of the necessary evils are just that you have to get some labs drawn to make sure that it’s safe to administer chemotherapy to make sure that the treatment is working, and you also have to go to infusion appointments.

I will say I’m pretty strict about masking, so if I have a patient perhaps come in for an in-person visit and it’s the type of mask where it’s slipping off of their face as they’re talking, and we’ve all experienced those types of masks that fit fine until you actually start talking. I’ll get a replacement mask for them to really make sure that everybody, the healthcare providers, the team as well as the patient, and if there’s a family member with them or a safest can be, and that includes wearing a properly-fitting mask.

How Will the Pandemic Impact Multiple Myeloma Trials?

How Will the Pandemic Impact Multiple Myeloma Trials? from Patient Empowerment Network on Vimeo

How has the COVID-19 pandemic changed multiple myeloma clinical trials, and how can telemedicine play a role in trials? Dr. Sarah Holstein shares her perspective on how trials were altered and her suggestions for improvements in trials.

See More From the Myeloma TelemEDucation Empowerment Resource Center

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Will Telemedicine Be a Long-Term Survival Tool for Myeloma Patients?

Is Telemedicine Here to Stay for Multiple Myeloma Care?

Are There Limitations of Telemedicine for Multiple Myeloma Patients?

 

Transcript:

Dr. Sarah Holstein

Early on, I was very concerned about the ability to conduct clinical trials during the pandemic, early on, at least in our institution, and I know that there were many others across the country, there was a lot of concern about really limiting what was considered by the IRB (Institutional Review Board) to be an essential contact. They perhaps placed an emphasis on later phase clinical trials and thought that the earlier phase clinical trials weren’t necessarily proving to be a benefit for patients and therefore shouldn’t be opened, and I would have to say that that was not what my thought was. I really think that all clinical trials, whether it’s a Phase I, Phase II, or Phase III or of utmost importance to our patients and are important for their care. So again, early on, I was very concerned about limiting the access of clinical trials to patients. As the pandemic has continued and it’s become clear that this is going to be life as we know it for unfortunately, quite some time, I know at our institution, we’ve really tried to be as safe as possible, but all clinical trials are open and we’re allowed to enroll, I think there still is room for improvement with respect to how telemedicine is incorporated into clinical trials, and whether or not we can do things like allowing patients to get their study labs drawn closer to home as opposed to traveling to the academic center, so I think there continues to be room for improvement for really trying to minimize the amount of traveling that people do, and therefore the amount of potential exposure that patients have.

We still are not routinely using telemedicine for the clinical trial visits, that most of those are still in person. And I think depending on the specific trial, that is probably appropriate if you have a new agent and a lot of what you’re looking for is evidence of toxicity, I think it is important to be able to evaluate the patients in person and really be able to conduct a normal physical exam, having said that though, if a patient’s on a clinical trial where they’re receiving more standard of care, and perhaps it’s in a maintenance phase of a study, I think being able to utilize telehealth for some of those more routine visits would really be beneficial for both the patients and the healthcare team.

Is Telemedicine Here to Stay for Multiple Myeloma Care?

Is Telemedicine Here to Stay for Multiple Myeloma Care? from Patient Empowerment Network on Vimeo.

With the emergence of telemedicine for multiple myeloma care, it’s being looked at for long-term care. Myeloma expert Dr. Sarah Holstein shares her hopes for the future of telemedicine – and shares some tips for optimizing telehealth visits.

See More From the Myeloma TelemEDucation Empowerment Resource Center

Related Resources:

 

Will Telemedicine Be a Long-Term Survival Tool for Myeloma Patients?

How Can Myeloma Patients Reduce Infection Risks During Medical Appointments?

What Are the Benefits of Telemedicine for Myeloma Patients?

 

Transcript:

Dr. Sarah Holstein

I really hope telemedicine is here to stay. If you’re practicing in a place like I am, where patients come from quite a distance, it would be great in the future if some of the more routine visits, can be a telemedicine and perhaps get into a rotation or maybe every three or four months, they come and see me in person versus the rest of their monthly visits via telemedicine. So, I very much hope that the government, as well as insurance carriers will continue to provide coverage for telehealth visits in the future, because I think it’s really broadened access for patients and it’s been a really wonderful thing for them in general. In terms of tips for preparing, some of it just comes down to understanding the technology and getting familiar with what you need to click on and making sure that you’ve allowed your iPad or your phone or computer access to your camera, it sounds silly, but sometimes a big chunk of the appointment can be eaten away because of the settings being wrong or pop-ups, so some of it is just trying to figure out the system ahead of time before you log on.

But other than that, I would say, making sure that you understand from your health care team, whether or not you can forward the link, if you’re using Zoom, for example, to other family members, so that you

can have multiple family members kind of Zoom in at the same time to be able to listen, and that way you’re not relying on yourself to take notes, and everybody doesn’t have to be in the same place at the same time, which again, given the pandemic is not wise anyways. So, I think just trying to figure out the technology involved and then making sure that you can have access or provide access to your family members or friends who want to virtually come to your visit with you is key for a successful visit.

Will Telemedicine Be a Long-Term Survival Tool for Myeloma Patients?

Will Telemedicine Be a Long-Term Survival Tool for Myeloma Patients? from Patient Empowerment Network on Vimeo

What can multiple myeloma patients expect for the use of telemedicine as part of their long-term care? Dr. Sarah Holstein shares her experience of using telemedicine for those with MGUS and those managing controlled disease – and her thoughts about the future of telemedicine.

See More From the Myeloma TelemEDucation Empowerment Resource Center

Related Resources:

 

Are There Limitations of Telemedicine for Multiple Myeloma Patients?

How Can Myeloma Patients Reduce Infection Risks During Medical Appointments?

What Are the Benefits of Telemedicine for Myeloma Patients?

 

Transcript:

Dr. Sarah Holstein

So, I think telemedicine is a really good fit for patients for either long-term survivorship issues or for patients that perhaps you’re just following with the precursor to myeloma, so for example, MGUS (monoclonal gammopathy of undetermined significance) where overall the risk is low that there’s actually going be a progression to myeloma over their lifetime.

So I have a number of patients who I see perhaps on an annual basis for those types of visits, and of course, over the last year, I’ve been doing a number of those visits via telehealth, and I think they’ve gone really well. It still allows me to ask my entire review of systems where I check through and make sure that there’s no subtle signs that I might be missing that somebody’s plasma cell disorder is progressing. They’ve had their blood work or scans or other testing done, and we can review those, but again, in those types of situations where the risk is low and somebody is doing well and it’s a fairly routine visit, I think the need to do a full physical exam, it’s pretty low, I think whether or not you’d hear anything on the lung exam in somebody who’s doing well and it’s just there for an annual basis exam, I don’t think that lung exam is going to add a whole lot, but really having the ability to still talk to each other, go over laboratory studies, really make sure that I’m not missing any subtle signs that might suggest concomitant lite amyloidosis or progression to myeloma can still very readily be done via telehealth.

What Are the Benefits of Telemedicine for Myeloma Patients?

What Are the Benefits of Telemedicine for Myeloma Patients? from Patient Empowerment Network on Vimeo

How will myeloma patients benefit from telehealth visits? Myeloma expert Dr. Sarah Holstein shares benefits she has seen while caring for her myeloma patients including broadening access and the ease of seeking a second opinion.

See More From the Myeloma TelemEDucation Empowerment Resource Center

Related Resources:

 

Is Telemedicine Here to Stay for Multiple Myeloma Care?

Will Telemedicine Mitigate Financial Toxicity for Myeloma Patients?

How Will the Pandemic Impact Multiple Myeloma Trials? 

 

Transcript:

Dr. Sarah Holstein

So, I think telemedicine has been one of the few silver linings of this entire pandemic, I had personally never utilized telemedicine previously in my career, and now I’m using it almost extensively these days to care for my myeloma patients.

I’ve always had patients who tell me that they wish they didn’t have to take a half day off to come to a clinic appointment, and sometimes the clinic appointments are only 20 minutes, but they’re driving an hour and a half or two hours or more to come to those clinic appointments. So, some of it has just been the freedom that allows patients to go about their lives and not have to take time off of work or time off from other things that they’re doing to physically travel to come and see me. Telemedicine though, has also really broadened the access to me in my cancer center, again, based on where I’m at in Nebraska, patients would sometimes have to travel a very far distance to see me, and these days it’s just a matter of logging on via Zoom to access me, and it’s allowed me to see patients for second opinions in not only different parts in Nebraska that otherwise would have been difficult to reach, but also really across the country.

So, telemedicine in general, has allowed patients much more flexibility in seeing me and has also allowed the ability for me to do second opinions without making patients travel quite a distance.

A New Phase: Bruce Jackson

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


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

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

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

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

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

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

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

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

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

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

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

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

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

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


Read more patient stories here.

Myeloma Treatment Decisions: Insist on Essential Testing

In this podcast, myeloma expert Dr. Amrita Krishnan explains the essential testing that should follow a diagnosis, how the results could impact myeloma therapy, and discusses new and emerging treatments.

Dr. Amrita Krishnan is Director of the Judy and Bernard Briskin Center for Multiple Myeloma Research at City of Hope in Duarte, CA. Learn more about Dr. Krishnan: https://www.cityofhope.org/people/krishnan-amrita.


Don’t miss an episode and subscribe to PEN’s Empowered! Podcast wherever podcasts are available.

Navigating Myeloma Treatment Decisions

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Download This Guide

Is My Myeloma Treatment Working?

Is My Myeloma Treatment Working? from Patient Empowerment Network on Vimeo.

How can a myeloma patient know if their treatment is working? Dr. Peter Forsberg explains tests involved in determining if myeloma treatment is effective and factors that may indicate that it’s time to switch therapies.

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

Download Program Resource Guide

See More From The Pro-Active Myeloma Patient Toolkit

Related Resources:

What Key Tests Should Follow a Myeloma Diagnosis?

What Key Tests Should Follow a Myeloma Diagnosis?

Myeloma Treatment Decisions: What’s Right for You Resource Guide

Transcript:

Katherine:                        

Once a patient has started treatment, how do you know if it’s working?

Dr. Forsberg:              

So, we’re lucky in myeloma in that we have some pretty easily accessible tools to evaluate how our response is going. How the myeloma is responding to treatment. How we’re sustaining that response and if we may be losing it at some point in time. And a lot of those come down to those blood tests I mentioned before.

The tools that measure protein levels or antibody levels in the blood, whether that’s intact antibodies or fragments of antibodies. So, that is that serum protein electrophoresis or serum free light chain levels.

Sometimes in conjunction with urine collections, which can measure abnormal antibodies in the urine. Those are ways that we can monitor on a month-to-month basis, how well the myeloma is responding to treatment. How well we are sustaining in a response or remission status. Or if it might be starting to come back.

We do at times use those in conjunction with other tests that look at things like bones using X-rays, MRIs or higher resolution scans like a PET scan. Or things like bone marrow biopsies which we may do at specific time points to evaluate the myeloma in different ways.

Whether that’s to evaluate a remission and see how deep that response might be, correlating it with blood work. Or if the myeloma come back, making sure we understand the characteristics of it. So, we’re lucky to be able to draw on tools that are not very invasive using bloodwork and sometimes urine. But we may couple that at certain other points in time with more substantial evaluations as well.

Katherine:                  

What could indicate that it’s time to switch therapies?

Dr. Forsberg:              

So, the most common indicator may be a change in one of those tests that I just mentioned. If we notice that there’s an increasing level of an abnormal antibody in the blood, one that’s usually produced by the myeloma, that may be our first indicator that the myeloma has become more active and that we need to change our treatment approaches. Other times people may develop symptoms from the myeloma that shows that it is becoming active and those would be our indicators. So, those are different ways that we help to monitor the myeloma. One is assessing the bloodwork and other things that we monitor pretty closely.

The other is being vigilant for new problems that may come out. So, we end up spending a lot of time with folks over the years with the myeloma and some of that may feel a bit routine, but we’re always trying to make sure that we’re attentive to new issues as they come up.

Myeloma Treatment Options: Where Do Clinical Trials Fit In?

Myeloma Treatment Options: Where Do Clinical Trials Fit In? from Patient Empowerment Network on Vimeo.

Dr. Peter Forsberg discusses how clinical trials help improve care for myeloma patients and shares advice to patients who are fearful about joining a trial.

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

Download Program Resource Guide

See More From The Pro-Active Myeloma Patient Toolkit

Related Resources:

What Is the Patient’s Role in Myeloma Treatment Decisions?

What Is the Patient’s Role in Myeloma Treatment Decisions?

Is My Myeloma Treatment Working?

Is My Myeloma Treatment Working?

How Can Myeloma Patients Advocate for the Best Care?

 

How Can Myeloma Patients Advocate for the Best Care?

Transcript:

Katherine:                        

Where do clinical trials fit in as a treatment choice?

Dr. Forsberg:             

So, I do clinical trials in myeloma, I am certainly an advocate for the important role of clinical trials in myeloma. It is how we learn more about how best to treat patients. So, clinical trials are the foundation on which our decision-making has been built and continues to be refined. We are at a place where clinical trials don’t mean one thing. There are different types of clinical trials. Different stages of trials. Some that may be what we call, early phase that’re looking at brand new medicines or medicines in entirely different ways.

And ones that are late phase, where they may be comparing a well validated standard of care, versus a new approach. So, understanding what the potential clinical trial is and what that entails and what its goals are, are an important factor for patients as they consider participating. But beyond that, trials are a really critical area for us to evaluate new therapies and to get better at using the medicines we have in novel or improved ways.

So, they can be a really useful piece for not only the myeloma community, but for patients as they navigate through. So, I haven’t had many patients who I take care of who participated in clinical trials and been disappointed that they did so. Usually, it’s a positive experience.

Even if it is one where you want to understand what you may be embarking upon as you begin the process.

Katherine:                  

Some patients can be fearful when it comes to clinical trials. What would you say to someone who might be hesitant to consider participating in one?

Dr. Forsberg:             

Well, like I said, I would say that one of the most important things is making sure you understand what the goal of the trial is. What it entails. Clinical trials may have one name, but they’re very different things. And the right type of trial may be very different in different clinical circumstances. So, feeling comfortable with what it is. Making sure you feel comfortable asking your provider what the rationale for the trial is.

But also, as I mentioned, trials are a unique process and one that can often be very fulfilling for patients. Understanding that not only may you be trying a new treatment approach, but that you’re hoping to contribute to our improvement for how we manage multiple myeloma. It’s an altruistic goal. But it can be one that can be pretty meaningful for patients if they’re comfortable moving in that direction.

What Should You Know About Myeloma Treatment Options?

What Should You Know About Myeloma Treatment Options? from Patient Empowerment Network on Vimeo.

Dr. Peter Forsberg outlines options in the myeloma treatment toolkit, including targeted therapies, chemotherapy, immunotherapy, and combination approaches —and explains how the recovery process from stem cell transplant has improved.

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

Download Program Resource Guide

See More From The Pro-Active Myeloma Patient Toolkit

Related Resources:

Myeloma Treatment Options: Where Do Clinical Trials Fit In?

Myeloma Treatment Options: Where Do Clinical Trials Fit In?

Essential Imaging Tests After a Myeloma Diagnosis

Myeloma Treatment Decisions: What’s Right for You Resource Guide

Transcript:

Katherine:                        

Would you walk us through the currently available myeloma treatment approaches and who they might be right for?

Dr. Forsberg:             

At this point, we’re lucky that we have a much broader toolkit to treat myeloma than we have had in the past. Myeloma is one of the successes in modern oncology in that way. At this point, we have a number of targeted therapies. Some of those are pill-based options, some are injections or infusional medicines. We have some immunotherapies, which are things like monoclonal antibodies, which help to work.

We use some conventional or older fashioned chemotherapy, often lower doses and as part of combinations. And steroids. Steroids are always the medicine that is one of the backbones of our combinations. In myeloma, we do often use combinations. So, it’s usually a mixture of targeted therapies. Sometimes immunotherapies or chemotherapies.

As well as steroids to try to treat the myeloma. And some of the considerations are, which combination makes the most sense. Are there other medical problems or disease related factors like disease aggressiveness that may influence which ones we wanna choose or how many. Also, is a three-drug combination the right fit or is a four or a two drug the right. And it does continue to evolve.

Our options and our ability to use multi-agent regimens has continued to improve as we’ve gotten better and better therapies that’re well tolerated and that allow us to use really active combinations, even in patients who may have substantial other medical problems. So, I think it’s been something that continues to evolve over time and will continue to evolve. But the good news is that it’s been an issue of just how to incorporate more and better options.

How do we bring these good new tools into the mix as early as is appropriate? To control the myeloma in really substantial ways. And again, as I mentioned, the question of the role of stem cell transplant continues to be an important one. That is a way for us to still use older fashioned chemotherapy at a high dose to help to achieve a more durable remission. But usually, the way that we parse through these targeted immunotherapies and chemotherapies, is something that may be individual.

Although, we have some broad principals that help guide us for how we manage patients across different types.

Katherine:                  

How do you decide who stem cell transplant might be right for?

Dr. Forsberg:             

The good news in the United States is that we’re able to be fairly broad in terms of our consideration of stem cell transplant. There is no age restriction above which it’s not. We’ve gotten better and better at supporting patients through stem cell transplant. We have better medicines to deal with potential toxicities. And so, patients do better and better in going through transplant. But it is still an intensive treatment modality. So, in considering it, it is an option for a large portion of myeloma patients at diagnosis. After we get the myeloma under control. But the decision remains an individual one. Some patients may prefer to defer stem cell transplant until a second line therapy or later.

Whereas others feel very comfortable moving forward with it in the first-line setting. I would say that it is certainly something that we try to demystify for patients. It can sound a little bit intimidating, certainly because it is a little more intense and requires more support. But it is something that we have gotten quite good at navigating patient and supporting them through.

Katherine:                  

What about maintenance therapy, how does that fit in?

Dr. Forsberg:             

Following initial treatments to get the myeloma under control, whether that includes stem cell transplant or not. Usually we transition into a maintenance therapy. Maintenance therapy is a way for us to sustain control or remission of the myeloma. And make that longer lived. So, what we use for maintenance may be different patient to patient. But it is a important part of our treatment approach for many patients.

Katherine:                  

Are some therapies less intense than others, and what are some possible side effects of those?

Dr. Forsberg:             

So, certainly there are treatments with varying degrees of intensity or potential toxicities. The good news is that as we’ve gained more and more treatment options, we’ve also gotten better at using the ones we have had for a while now to minimize some of their toxicities. So, by adjusting dosing schedule and routes of administration, we’ve gotten better at fine tuning the tools we have toward minimizing those toxicities.

So truthfully, many myeloma patients after you start treatment, actually feel better than before they started chemotherapy because the myeloma itself is a destructive process and the treatments are quite often well tolerated. That being said, certainly over time, treatment related side effects often emerge. Some of the treatment toxicities may cause some challenges in terms of managing patients through their myeloma process. But usually, those can be overcome. Even if that means needing to adjust the treatment protocol.

Adjust doses, change medicines. And so, while there are varying degrees of intensity, we’re usually able to find the right balance for any given patient to still have a very active anti-myeloma regimen while trying to be very cognizant of potential treatment toxicities and taking steps to mitigate that.

What Is the Patient’s Role in Myeloma Treatment Decisions?

What Is the Patient’s Role in Myeloma Treatment Decisions? from Patient Empowerment Network on Vimeo.

Myeloma specialist Dr. Peter Forsberg shares his perspective on how patients fit into the shared decision-making process and their role in helping move treatment forward in a timely manner.

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

Download Program Resource Guide

See More From The Pro-Active Myeloma Patient Toolkit

Related Resources:

What Is the Patient’s Role in Myeloma Treatment Decisions?

What Is the Patient’s Role in Myeloma Treatment Decisions?

How Targeted Therapy Works to Treat Myeloma

Myeloma Targeted Therapy: Why Identifying Chromosomal Abnormalities Is Key

Transcript:

Katherine:                        

What do you feel is the patient’s role in the decision, and how does shared decision making come into play?

Dr. Forsberg:             

So, I think it’s always a really important piece of the puzzle to be a part of the decision-making process. Myeloma can be a challenging disease to understand. There are some pretty significant nuances in terms of what our treatment options are and what our goals may be.

So, I think having a patient who is involved in that process, who is actively asking questions. Engaging their provider if something doesn’t make sense. If our goal is not clear. Trying to make sure that you ask that. As oncologists, a lot of what we do involves communication and trying to help bridge gaps between our understanding of diseases and treatments and what patients see and feel and understand.

So, I think it’s really a critical piece of it for patients to ask questions, to engage. Now, I will say that one of the important things is often when the myeloma is newly diagnosed, we do need to move into treatment in a relatively timely manner. So, engaging with that process, being ready to move forward is our key component.

 

What Are Key Factors in Myeloma Treatment Decisions?

What Are Key Factors in Myeloma Treatment Decisions? from Patient Empowerment Network on Vimeo.

Myeloma specialist Dr. Peter Forsberg explains the factors that he considers when making a treatment choice, including how treatment goals can vary from patient to patient.

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

Download Program Resource Guide

See More From The Pro-Active Myeloma Patient Toolkit

Related Resources:

What Is the Patient’s Role in Myeloma Treatment Decisions?

What Is the Patient’s Role in Myeloma Treatment Decisions?

How Targeted Therapy Works to Treat Myeloma

Myeloma Targeted Therapy: Why Identifying Chromosomal Abnormalities Is Key

Transcript:

Katherine:                        

 When deciding on a treatment approach with a patient, what do you take into account when making the decision?

Dr. Forsberg:             

So, there are pretty substantial factors that may impact treatment decision with myeloma. Our goal in almost all patients is to try to get the myeloma under control. Usually when we diagnose myeloma, it’s pretty active. Often, it’s causing significant problems. So, our goal in all patients is trying to get the myeloma under control to some degree.

Now, how aggressive we may be towards that is impacted by a number of things. One of the most important ones is who the patient is. Myeloma is diagnosed, and it never develops in a vacuum. It always develops in a person and that person may have substantial other medical problems. They may be younger; they may be older. They may be more fit or more frail. So, those are all factors that may contribute to our initial treatment choice.

Because often, what we’re initially deciding on is how many medicines we may use initially to try to treat the myeloma. And our goal my be to try to push a little harder, to try to achieve the deepest possible remission. In those circumstances, in certain patients, we may incorporate things like a stem cell transplant as one of our second steps. In patients who are somewhat less robust, we may be thinking that our primary goal is just to achieve and maintain control of the myeloma.

But not necessarily pushing for the deepest possible remission. Balancing the potential side effects from medicines with the importance of stopping the negative affects that the myeloma drives.

Katherine:

Any talk about treatment goals and what that means?

Dr. Forsberg:             

So, as I mentioned, treatment goals may be different person to person. It takes into consideration who the patient is, what their priorities may be. What’s important for them in terms of not only living with the myeloma, but their life in general. So, there are many patients where our goal is to achieve a very robust, very long duration remission.

And there may be other patients where our goal isn’t just to control the myeloma, but to minimize treatment-related side effects. So, our priorities may be somewhat different. But almost always, it is to prevent issues that may come up from the myeloma and we’re lucky that often times those treatment goals align with tools we’re able to bring to bear. Our medicines for myeloma can help us achieve the goals of treatment, whether that’s achieving the deepest possible remission and sustaining it or prioritizing quality of life across a very broad patient spectrum.

How Do Myeloma Test Results Guide Prognosis and Treatment?

How Do Myeloma Test Results Guide Prognosis and Treatment? from Patient Empowerment Network on Vimeo.

Myeloma specialist Dr. Peter Forsberg explains how myeloma test results help in assessing the disease stage and prognosis, and how identification of chromosomal abnormalities may aid in treatment decisions.

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

Download Program Resource Guide

See More From The Pro-Active Myeloma Patient Toolkit

Related Resources:

Why Myeloma Patients Should Speak Up: Advice from a Nurse Practitioner

Myeloma Treatment Decisions: What’s Right for You Resource Guide

Myeloma Targeted Therapy: Why Identifying Chromosomal Abnormalities Is Key

Transcript:

Katherine:                  

What do the results of these tests tell us about prognosis and treatment choices?

Dr. Forsberg:             

So, the tests that we do are important in terms of understanding some degree how aggressive the myeloma may be or what the prognosis may be. One of the most common or challenging things to break through when diagnosing myeloma or learning about your myeloma is that it’s a little different than other types of cancer. Unlike other cancers that’re more common, stage in myeloma is very different than it is in breast cancer or lung cancer or things that people may have more experience with. In myeloma, everybody has systemic disease.

That’s a part of the diagnosis of myeloma. It means it’s a body-wide condition. So, being stage I or II or III is very different than what it might be in other diseases where that has a huge prognostic impact and also, really shapes what treatment might be. In myeloma, we do use blood tests and chromosomal changes to help us assign a stage to the myeloma, which may tell us about how aggressive the myeloma may be over time.

But our treatment approaches tend to be pretty similar, even for people regardless of their stage. So, our goals are always to get patients’ myeloma under control and maintain it there. So, treatment ends up overlapping pretty substantially. Regardless of what those in initial tests are that stratify potential disease aggressiveness. That being said, there are some ways that we do adjust treatment potentially in patients that we see evidence of potentially more aggressive disease or less. And that might be ways that we amplify treatment regiments, adding extra medicines or using maintenance approaches that’re a little more robust to try to help overcome those high-risk features.

Katherine:                  

What about the significance of chromosomal abnormalities?

Dr. Forsberg:             

So, chromosomal abnormalities are part of some of those staging systems. They’re included in what we call our revised international staging system, as well as just being part of our routine risk assessment.

To try to understand myeloma. So, in myeloma, at this point those genetic changes or chromosomal changes don’t necessarily drive specific treatment choices except in that they may stratify how aggressive disease could be and may be informative in that regard.

The Warrior in Me Saved My Life

After experiencing increasing fatigue over the course of several years, I started to miss gatherings with friends and family and got to the point of taking one day off a month from work to sleep all day. This was unlike me as I was always very involved with professional and volunteer activities and had a very full schedule including parenting my young son with my spouse. After a lingering cold evolved into bronchitis, I began to explore what was wrong with the assistance of my primary care provider (PCP). I had mild persistent anemia, but nothing to warrant the degree of extreme fatigue that I was experiencing. She (my PCP) was very tolerant of my various Google-induced ideas, graciously accepting some to follow up with tests and others to set aside. 

After eleven months, a test showed that I had elevated M-proteins and my PCP sent me to a hematologist/oncologist who after greeting me reviewed several years’ worth of labs and then turned to tell me to come back in six months. She did not examine me. She did not ask me about my symptoms. She prepared to usher exit the room. I felt that I could not leave her office without her understanding how significantly the fatigue was impacting my daily life. This is when the inner warrior in me said NO! I did not move from my chair. I told her, “Nope. Now is the time that I need to tell you about my symptoms.” (Now this was somewhat uncomfortable for me because I have been well-trained to be polite and professional with doctors, but I had had enough. My New York elbows were coming out!) 

I read from a list that I had prepared detailing what I had been able to do prior to feeling unwell and what I could do now. As I went down the list for several minutes, she looked at her watch in a disgruntled manner, finally asking me “What do you want?” I told her that I wanted to feel well. I did not feel well and believed that something was wrong. I wanted her to do more tests. She agreed and also sent me out to schedule an appointment in six months. One week later at 8 AM as I was on my way out to work, SHE called me to tell me that she had scheduled a bone marrow biopsy (BMB) for the next day. I cleared my calendar. The BMB results confirmed that I had stage 2 Myeloma with more than 80 percent involvement in my bone marrow. My husband and I learned of this on the day before Thanksgiving. We were both in shock. We had so much to learn and at that point had no idea how much this diagnosis was going to change our lives. 

After a quick success of additional tests scheduled STAT, I started chemotherapy within two weeks. Getting a diagnosis took A LOT of persistence and determination when specialists minimized what I knew about my body — that something significant was wrong. And it was. Today is five years to the day of that diagnosis and I still wonder whether I would be diagnosed today if I had not INSISTED upon further testing. To her credit, the oncologist/hematologist did eventually acknowledge that I was right to press her to do more tests and that it was through my self-advocacy that I achieved a diagnosis.

What I would hope that others would take away from this story is how essential it is to be aware of your own body and to keep advocating (again and again) for yourself with doctors even when your symptoms are minimized. I was trained to advocate for others as a social worker, but it took intentional work to give myself permission to say no to doctors at first politely and then later not so politely to demand additional testing until an outcome was achieved that explained my health issues. Be persistent. You know more about your symptoms than anyone else. Do not stop until you find out what is going on with your body.