Multiple Myeloma Archives
Plasma cells are cells in the immune system that make antibodies, which help the body fight infection and disease. Multiple myeloma cells are abnormal plasma cells (a type of white blood cell) that build up in the bone marrow and form tumors in many bones of the body.
More resources for Multiple Myeloma from Patient Empowerment Network.
When it comes to cancer treatment you or a loved one may be considering participating in a clinical trial as a treatment option. Clinical trials are designed to evaluate the safety and effectiveness of a treatment. They may involve researchers administering drugs, taking blood or tissue samples, or checking the progress of patients as they take a treatment according to a study’s protocol.
Learning about clinical trials can be a steep learning curve – not least because the process comes with a lot of new terms, acronyms and jargon. To help you, I’ve put together this list of the most common terms you will find when you are researching clinical trial information. This is not an exhaustive list but it is a helpful starting point. At the end of this article you will see links to find more information.
Adverse Effects (AE)
Also called Adverse Events, or Adverse Drug Reaction, AEs are any harmful event experienced by a person while they are having a drug or any other treatment or intervention. In clinical trials, researchers must always report adverse events, regardless of whether or not the event is suspected to be related to or caused by the drug, treatment or intervention.
Subsection of people within a study who have a particular intervention.
Bias is an error that distorts the objectivity of a study. It can arise if a researcher doesn’t adhere to rigorous standards in designing the study, selecting the subjects, administering the treatments, analysing the data, or reporting and interpreting the study results. It can also result from circumstances beyond a researcher’s control, as when there is an uneven distribution of some characteristic between groups as a result of randomization.
Blinding is a method of controlling for bias in a study by ensuring that those involved are unable to tell if they are in an intervention or control group so they cannot influence the results. In a single-blind study, patients do not know whether they are receiving the active drug or a placebo. In a double-blind study, neither the patients nor the persons administering the treatments know which patients are receiving the active drug. In a triple-blind study, the patients, clinicians/researchers and the persons evaluating the results do not know which treatment patients had. Whenever blinding is used, there will always be a method in which the treatment can be unblinded in the event that information is required for safety.
When a treatment for a specific medical condition already exists, it would be unethical to do a randomized controlled trial that would require some participants to be given an ineffective substitute. In this case, new treatments are tested against the best existing treatment, (i.e. a comparator). The comparator can also be no intervention (for example, best supportive care).
A trial is considered completed when trial participants are no longer being examined or treated (i.e. no longer in follow-up); the database has been ‘locked’ and records have been archived.
A group of people in a study who do not have the intervention or test being studied. Instead, they may have the standard intervention (sometimes called ‘usual care’) or a dummy intervention (placebo). The results for the control group are compared with those for a group having the intervention being tested. The aim is to check for any differences. The people in the control group should be as similar as possible to those in the intervention group, to make it as easy as possible to detect any effects due to the intervention.
How beneficial a treatment is under ideal conditions (for example, in a laboratory), compared with doing nothing or opting for another type of care. A drug passes efficacy trials if it is effective at the dose tested and against the illness for which it is prescribed.
Eligibility Criteria/ Inclusion and Exclusion Criteria
Eligibility criteria ensures patients enrolling in a clinical trial share similar characteristics (e.g. gender, age, medications, disease type and status) so that the results of the study are more likely due to the treatment received rather than other factors.
Observation over a period of time of participants enrolled in a trial to observe changes in health status.
A process (by means of a written informed consent form) by which a participant voluntarily agrees to take part in a trial, having been informed of the possible benefits, risks and side effects associated with participating in the study.
The treatment (e.g., a drug, surgical procedure, or diagnostic test) being researched. The intervention group consists of the study participants that have been randomly assigned to receive the treatment.
A person responsible for the conduct of the clinical trial at a trial site. If a trial is conducted by a team of individuals at a trial site, the investigator is the responsible leader of the team and may be called the principal investigator (PI).
A clinical trial conducted according to a single protocol but at more than one site, and therefore, carried out by more than one investigator.
Number needed to treat (NNT)
The average number of patients who need to receive the treatment or other intervention for one of them to get the positive outcome in the time specified.
The impact that a test, treatment, or other intervention has on a person, group or population.
Phase I, II, III and IV Studies
Once the safety of a new drug has been demonstrated in tests on animals, it goes through a multi-phase testing process to determine its safety and efficacy in treating human patients. If a drug shows success in one phase, the evaluation moves to the next phase
- Phase 1 tests a drug on a very small number of healthy volunteers to establish overall safety, identify side effects, and determine the dose levels that are safe and tolerable for humans.
- Phase II trials test a drug on a small number of people who have the condition the drug is designed to treat. These trials are done to establish what dose range is most effective, and to observe any safety concerns that might arise.
- Phase III trials test a drug on a large number of people who have the condition the drug is designed to treat. Successful completion of Phase III is the point where the drug is considered ready to be marketed.
- Phase IV trials can investigate uses of the drug for other conditions, on a broader patient base or for longer term use.
A fake (or dummy) treatment given to patients in the control group of a clinical trial. Placebos are indistinguishable from the actual treatment and used so that the subjects in the control group are unable to tell who is receiving the active drug or treatment. Using placebos prevents bias in judging the effects of the medical intervention being tested.
A group of people with a common link, such as the same medical condition or living in the same area or sharing the same characteristics. The population for a clinical trial is all the people the test or treatment is designed to help.
A plan or set of steps that defines how something will be done. Before carrying out a research study, for example, the research protocol sets out what question is to be answered and how information will be collected and analysed.
Randomized Controlled Trial (RCT)
A study in which a number of similar people are randomly assigned to 2 (or more) groups to test a specific drug, treatment or other intervention. One group has the intervention being tested; the other (the comparison or control group) has an alternative intervention, a placebo, or no intervention at all. Participants are assigned to different groups without taking any similarities or differences between them into account. For example, it could involve using a computer-generated random sequence. RCTs are considered the most unbiased way of assessing the outcome of an intervention because each individual has the same chance of having the intervention.
The ability to get the same or similar result each time a study is repeated with a different population or group.
People in a study recruited from part of the study’s target population. If they are recruited in an unbiased way, the results from the sample can be generalised to the target population as a whole.
In clinical trials, the people selected to take part are called subjects. The term applies to both those participants receiving the treatment being investigated and to those receiving a placebo or alternate treatment.
The location where trial-related activities are conducted.
A Stanford Medicine X e-Patient scholar, Marie Ennis O’Connor is an internationally recognized keynote speaker, writer, and consultant on global trends in patient engagement, digital health and participatory medicine. A board member of the Patient Empowerment Foundation, a network of people, foundations, organizations and medical institutions dedicated to empowering patients worldwide, Marie’s work is informed by her passion for embedding the patient voice at the heart of healthcare values. She writes about the experience of transitioning from breast cancer patient to advocate on her award-winning blog Journeying Beyond Breast Cancer.
Suja JohnkuttyHi there ! I’m Suja Johnkutty, MD a conscientious mom and neurologist . My one simple goal is to provide you honest, practical, simple action steps to experience better relaxation in your life. https://betterrelaxation.com
Hi there ! I’m Suja Johnkutty, MD a conscientious mom and neurologist . My one simple goal is to provide you honest, practical, simple action steps to experience better relaxation in your life.
Myeloma Patient Cafe®
Five myeloma patients from around the country sat down to discuss their disease and how to make the best treatment decision for them.
Hello everyone and welcome to the Patient Empowerment Network’s Myeloma Patient Café. My name is Cindy Chmielewski, and I’ll be hosting the program today. I was diagnosed with multiple myeloma way back in 2008. The Myeloma Patient Café is an opportunity for myeloma patients to get together and discuss their disease and also to share tips and information about myeloma.
Today’s topic is going to be how to make a treatment decision. But before we get into that discussion, I think it’ll be nice if we all go around and take a few minutes to introduce ourselves. We could say our name, where we’re from, and just a short history of our treatment journey. I’ll go first.
As you know, my name is Cindy. And I’m from Lawrenceville, New Jersey, and I was diagnosed with multiple myeloma back in 2008. When I was diagnosed, my myeloma was really tricky to begin with. My induction therapy stopped working for me just after a few cycles, and a stem cell transplant failed to put my myeloma into remission. So, I was very, very scared back then, and I retired from teaching.
But fortunately, a combination therapy was able to put my myeloma in what’s called a very good partial remission. But it took almost three years to get that maximum response. And right now, I’m staying in that very good partial remission with maintenance therapy.
I was diagnosed in 2013 after having MGUS in 2009 and smoldering myeloma in 2010. My initial treatment was part of a clinical trial, and I had Revlimid, Velcade, and dex for three cycles, then a stem cell transplant, and then two more cycles of RVD and then maintenance therapy on Revlimid until 2018. I was really fortunate. I went into stringent complete remission and MRD negative. But then in July 2018, I began to relapse. So, I’ve started another treatment with Elotuzumab, Revlimid, and dex, and that’s been working pretty well recently.
Good. Thanks for that introduction. And Alan, would you like to share a little bit about your story?
Sure, I was diagnosed in 2016. I was very far along, and the myeloma was very advanced. And when I was first diagnosed, I was put in the hospital and nearly died in the hospital because of some pain meds they gave me. It just shut down my digestive system. But anyway, everything happened really fast because it was so advanced. I really didn’t have much time to make decisions. We found it because my L5 vertebra had collapsed. I found out I had fractures in every vertebra, clusters of fractures in my ribs, 147 lesions on my bones, and 60 percent of the cells in my marrow were cancerous.
Like I said, it was so advanced I really didn’t have much time to make plans, but I went through two rounds of VDT-PACE. I went to a myeloma clinic that specialized in multiple myeloma. I did two rounds of VDT-PACE, then tandem stem cell transplants, then 16 rounds of Darzalex or daratumumab. Then they told me I was in remission and then went on maintenance treatments. I did Ninlaro and dex and – oh, Revlimid. That’s what it was. I did that for about seven or eight months. And my blood counts were just staying so low that they finally took me off that. My white count would never get over about 1.5 to 2. So, then I went back on the Darzalex, and that’s what I’m on now. I’m in stringent remission.
Good to hear that. You had some journey there. And Connie, can you tell us a little about your story?
I was diagnosed January 3rd of 2010 after I fractured my sternum in a race. A gal was pacing me, and I thought I had a sports injury and just had too much fun sprinting. But it took about nine months before they finally realized that I’d fractured my sternum that day, and then I got diagnosed with the multiple myeloma.
And Josine, how about you?
Hi. I was diagnosed actually five years ago this past month, Columbus Day weekend 2014, with 32 compressed fractures in my spine and my ribs from – I thought it was from lifting a box of legal documents at work in Manhattan, but it wasn’t. It was the myeloma pushing out because I had – 95 percent of the plasma cells were cancerous. Fast forward three months later I had a stem cell transplant, never went into remission. I’m on a triplet now of Revlimid, Ninlaro, and dex, and it brought my M-spike down to 0.2, which when I started out, I was at 8.0. So, life is good.
So, now let’s talk about how we make treatment decisions. And Mike, I’m gonna go back to you. When you were in smoldering myeloma, you had that opportunity to either watch and wait or to go on a clinical trial. What made you decide clinical trial? What was part of that decision-making process?
When I was in smoldering myeloma, I wasn’t really offered a clinical trial. It was when things switched from smoldering to active myeloma. And what made me decide to do the clinical trial is a couple of things. One, my background is that I am a scientist, an engineer. So, I’ve been interested in the science behind treating multiple myeloma and other cancers and wanting to do my little part to try to help advance the science through participating in a clinical trial. So, that was one factor.
The second factor is that I felt like I’d get really good treatment period, but I’d get the very best treatment if I was in a clinical trial. And it turns out that I was monitored much more frequently while I was in the clinical trial than I would’ve been otherwise. And that ended up over time giving me, I think, some peace of mind. So, I’m really glad that I did participate in the clinical trial.
Good. Anyone else participate in a clinical trial or had that option brought up to them? No?
I did not.
No. Did your doctors ever ask if you were interested? Or was that never brought to your attention?
It was never brought to my attention.
Josine, did the doctor ever ask you?
No, no. I would definitely be up for it, but it never came up in conversation.
How about you Connie?
My numbers are very, very gradually going up like myeloma likes to do. And so, we have – looking ahead to a relapse at some point, my specialist brought up clinical trials and that we could discuss them and look them over and decide at that point.
Good. And while I’m talking to you, I think I read in your biography that you chose not to go ahead and have a stem cell transplant. Is that correct?
And can you talk about – a little bit why – what went through your head to make that decision?
I think at that particular time the result of quality of life or overall length of life were very similar in terms of whether you had a stem cell transplant or in my case with standard risk myeloma. And I might at that time could’ve – everything that we had talked about and looked at with the research – maybe buy six more months of overall life – of survival. And I have to admit I was a little bit skeptical about – I guess I’d say killing off your immune system and how that might come back or not come back. And with standard risk, I decided to go up to Mayo Clinic and have them collect my stem cells as an insurance policy of sorts and then see how my myeloma progressed.
And at that time, were you in a complete remission when you were making the choice of whether or not to have a stem cell transplant?
No, I wasn’t. I know the standard of care, and that was explained to me – was to have a stem cell transplant. But when I looked at the numbers with my specialist and my local oncologist, Revlimid was seeing some very good results. So, it really looked very similar to me. I thought with a deeper response up front we might get an overall better response, but I decided to – at my age – just to see how it would progress.
And that’s why this is such a crazy disease because everyone has a different presentation and yeah. And, I think, Alan, you were a little bit different. You had double transplants? Was that tandem transplants?
That’s correct, about 60 days apart.
Can you talk about how you decided and why you decided to have such an aggressive line of therapy?
Well, I think part of it comes to my personality type. I’m a business owner, and I’ve been fairly successful in life by surrounding myself with people that know way more than I do and letting them do their jobs. As I said in the beginning, things happened so fast with us we didn’t have much time to make decisions. And we were sent to a myeloma center. They specialize in multiple myeloma, and I feel like it’s probably the best in the world. But, of course, I guess everybody feels that way about where they’re treated, but my doctor was one of the top people in the world that specialized in multiple myeloma. He’s a clinical research scientist. And he told me how bad it was, and he said we’ve gotta treat it aggressively. But if we do, we feel like we can get you in remission.
And, you know, I really – when I first met him, he introduced himself by his first name, and I liked him, and I trusted him. And I had done a little bit of research on him, and I had just decided to do what he said. And it really made it – in many ways, it was easier for me because my situation was so bad that – and I know there are people that have had way worse than I have. But it was urgent that we make decisions. I didn’t really have a lot of time to think about it. So, I just surrounded myself with really good people and did what they said.
Probably the only decision I’ve really had to make is between my first transplant and my second. And like I said, they were only about 60 days apart. I did really well recovering from my first transplant. They released me to go home 14 days after my transplant, which they said was fairly unusual. The day I got home, I got C. diff And I was brutally ill, and then I got the flu. And then I got C. diff, and then I got the flu again. So, basically out of a two-month break, I was sick for a month.
Oh my gosh.
And when I went back, he told me – he said, “Look, I know you’ve had a hard time. So, we can go one of three ways. Your test results were very good, so we can either let you go home for a couple weeks to recover.” Of course, he knew I had to run a business too while I was going through all that. And he said, “Or, we can do a reduced dose of melphalan, or we can just give you the full dose.” And I’m an idiot, and I said just give me the full dose. So, that also says a lot about my personality card.
But anyway – so, I don’t have any regrets. It’s taken me a long time to get back on feet, but I live a pretty normal life. About four or five weeks after I got home from my second stem cell transplant, I made arrangements to continue a family tradition of going fishing with my dad and my sons in South Louisiana. And I looked like a ghost honestly, but I’ve forced myself to do a lot of things I didn’t feel like doing so that I could recover.
Josine, can you talk about your initial treatment and if you were part of that decision-making process?
I know that initial treatment shocks us, and many of us are really, really sick. So, we’re really not part of it, but talk a little bit about your experience.
Yeah. I was totally out of it at that point when I was first diagnosed because I was on morphine for 10 days, and I lost 10 days of my life. So, I never had anyone say that I had this cancer or discuss any treatments me. So, I was at their mercy. They gave me bendamustine and CyBorD – no. Yeah, CyBorD and bendamustine in the hospital. And I had, like I said, no recollection of any of it at all. My husband was there to make all those decisions at that time.
So, now, unfortunately, we have myeloma. And myeloma is one of those diseases of relapse and remission right now, although I’m very hopeful that we’ll be curing some people very soon. No one’s saying that they have a cure for myeloma. So, there’s a possibility that we will relapse in the future. Hopefully, the really, really, really distant future, but there’s that possibility. So, when we’re thinking about treatments, what do you think are some of the things that you consider when making that treatment option?
In my case, Cindy, last year – last July, my oncologist gave me eight different options. And we went through the list, the pros and cons of each of those eight options, and finally together decided on the Elotuzumab, Revlimid, and dex. And it was very important to me to sort of understand what his thinking was and why he liked this option versus that option and so forth. Part of it had to do with how effective we thought things would be given my myeloma and my history with myeloma. Part of it had to do with side effects that we wanted to avoid. I have peripheral neuropathy left over from Velcade. So, that sort of ruled out Velcade. But anyway, it’s great that we had so many different options to be able to choose from. I’m fortunate enough to be in that position now. And it made me feel good to be able to go through those options one by one with my myeloma specialist.
Some of the things you considered is what your specialist was thinking, why he picked a treatment; but you also considered some side effects from previous treatments when selecting your new treatment, which makes a lot of sense. If you already had neuropathy, trying a treatment that is known to cause neuropathy might not be the best choice.
Yes. Anybody else – things that they considered in the past when making a treatment decision or think they would be considering in the future for future treatment decisions?
I had to make the decision about going on maintenance. And I have a lot of friends with multiple myeloma, and some of them chose not to do maintenance. I guess, once again, it goes to my personality type. The first thing I asked my specialist was, “If you were me, what would you do?” Nobody knows better than he does. And why would you do that. And he told me, and then the other side of it is – going back to my personality, I’m more likely to do the most aggressive thing to go ahead and get it over with. And that’s kind of why I decided I should finish my maintenance. They originally scheduled three years of maintenance for me. And I should finish that in January or February of next year.
So, it was trusting your specialist but asking why he chose that treatment.
But your personality is – go for the gusto there.
Yes. And the other side of it is that right now I’m an 18-year-old in the body of a 70-year-old. I’m actually 52, but I figure I can handle the more aggressive treatments right now than maybe I could 10 years from now. I’ve got kids. I’ve got a grandson. And I figure if it means me doing the most aggressive things so I can be with them longer, I don’t mind doing that.
And Connie, I think one of your considerations was quality of life. I heard you talk about quality of life when you made that decision about not having your stem cell transplant right up front, harvesting your cells, keeping them in the fridge just in case you need it. Can you talk a little bit more about that?
Yeah. I looked at having the stem cells available, so I could have a stem cell transplant if I needed one. And I wanted to continue to compete with the race walking. So, that was a small part of it. Also, I with my oncologist – this last appointment he mentioned that if my numbers continue to just go very slowly up that maybe the next appointment that we would discuss some options. He did mention that he liked – maybe for my particular situation – adding daratumumab. And we would be looking probably at a two- or three-agent combination. I’m, unfortunately, not able to tolerate the dex. So, I’m not sure how important a factor that is for trying to enter a clinical trial. I’ve noticed most of them do use dex because of the synergy there. So, that’s a bit of a concern for me as well.
I know you are not on your induction therapy now. You had some treatment decisions to make. Can you talk a little bit about what you thought about when going through those?
Oh, sure. When the famous 100-day visit to the hospital – after you have your stem cell transplant; my specialist asked me if I wanted to go on consolidation or right onto maintenance. And I guess I was kind of like Alan. I’m like – I wanna do this consolidation first because I wanna do as much as I can to get to where I have to be and then start the maintenance. The only thing is I was on Velcade for those eight weeks, and there was no change at all in any of my numbers. So, then I was on Rev only for a year and a half.
And after that, the light chains went up, and I had new lesions. And my specialist had suggested adding Ninlaro and dex. And I had known that – well, he had told me. I didn’t know it then – that Ninlaro and Velcade were in the same class. And I was questioning him. I said, “Why would I go on that if the Velcade did nothing for me. And he said, “Well, working as a triplet it’ll work better.” And it really did. So, I’m grateful for that, but I was very confused at the time.
You mentioned the words consolidation and maintenance. Can you explain what the difference between consolidation and maintenance therapy is?
Sure, consolidation is something that you do right before a maintenance program. It’s just eight weeks. They’re gonna try something to bring the numbers down even lower because, obviously, the stem cell transplant wasn’t as magical as they thought it would be for me at that time. So, I opted to do that just to give it a little boost to see if something else would work. And then the maintenance – I know Alan said he’ll be on it for three years. I think I’m gonna be on it indefinitely. I didn’t get an end date on mine.
And usually consolidation is more of a full dose of whatever treatment that you’re choosing to use as consolidation, whereas maintenance is usually a reduced dose or a reduced scheduling.
One thing my myeloma specialist has said to me recently is that the line between consolidation and maintenance is kind of blurring now, and more patients are on sort of maybe in between consolidation and maintenance where you’re on treatment with more than one agent for an extended period of time. He’s told me I’m gonna be on something forever and ever for the rest of my life. So, it’s sort of hard to say whether it’s consolidation or whether it’s maintenance. It all just sort of blurs at this point.
Yeah, it’s hard to make that distinction. When does the consolidation end and the maintenance begin? At what dose level?
That also shows how different we all are, and I’m in some different Facebook groups and support groups and things. And I see people asking what are the – how does the treatment progress, and what are the side effects of this drug and that drug. But we’re all different. And that’s the thing that is so important, even though there are some general guidelines – even in our treatments. I was classified as low risk. They got me into remission pretty quickly. So, things could change; but as of right now, there isn’t an end date to my maintenance treatments. I know people that didn’t do any maintenance. And then I also know people that probably won’t ever stop. And we were all treated at the same place.
It is very different from person to person, from treatment to treatment and even within yourself. Sometimes, you respond very quickly to one treatment and very slowly to another. So, that’s one of the benefits of being seen by a myeloma specialist, someone who only treats myeloma. Is everyone here being seen by a myeloma specialist?
Actually, I see two myeloma specialists – one and one for a second opinion, but I really do get my treatment locally. So, I’m very fortunate that all three of my doctors communicate with each other and work well with each other. So, let’s think about – if we had to make a treatment decision in the future and you were given two options, what kind of information would you like to know about each of those options before you make that decision?
I knew early on – one of the considerations I thought of after my stem cell transplant didn’t work was, I was still working at the time, and I was a teacher. And being a teacher, it was hard to take off from school to go to an infusion center to get my treatment. Or if I had to go several times a week, that just was not something possible. And I was trying to continue to teach.
So, one of things that I was considering back then was how the treatment was given. And one of the treatments that I chose was an oral treatment because that allowed me to continue to be employed. Eventually, I did retire. And that wasn’t as much of a concern, but back then, when I was still working and knew that it would be a conflict, that was something that came into my decision-making process. Anybody else?
I would have to say for me the side effects probably would be the least important. I think I can probably endure a lot at this point in my life if it’s just temporary. I do have three businesses, and that would come into play as far as how treatments would go. My primary business as a financial advisor – I can pretty much do that from anywhere. In fact, even when I was going through my stem cell transplants, I always had my laptop with me. But since then, in the last year or year and a half or so, I’ve started two more businesses, and that would definitely come into play.
Does that – you were saying –
And the other thing is I’d wanna know what the track record is, you know? Do we have a long-term track record?
So, you’re saying side effects for you would be least. But track record – are you talking more about the efficacy of the drug, how well it works compared to other drugs? What do you mean by track record?
I would wanna know – I would be more willing to trust something that had a long-term track record of success than something new that we really just don’t know that much about. And that conversation actually came up with my doctor because there are a lot of new drugs out on the market right now. And he did tell me. He said, “Some of myeloma specialists are kind of getting away from the older drugs that we know work and going to these newer drugs.” He said, “I like to combine the two.” And that’s basically what he did. For my consolidation round, instead of doing a lower-dosed VDT-PACE of Velcade, dex, and thalidomide like they had historically done – for my consolidation round, they put me on the daratumumab. And I did 16 weeks of that, one treatment a week for eight weeks and every other week for eight weeks, and then I went on my maintenance.
Any other things that you would wanna consider or information you would want to know about a treatment before you make that decision?
I think we’re getting close to the point where it’s gonna be important to understand a lot about the molecular basis of your particular form of multiple myeloma in order to be able to personalize the treatment. So, what particular mutations are driving your or my myeloma at this particular point? Because we know that changes over time, and what drugs are most effective against those mutations? I don’t know if we’re exactly at this point yet, but I think we’re getting close to that. So, when I relapse again, that’s something that I’m gonna be talking with my doctor about – exactly what mutations have I got and what are the best drugs against those mutations?
I do agree with that, and I know the Myeloma Institute where I was treated they do genetic studies on every patient. I’m sure they do that in other facilities also. And I definitely agree that that’s where they’re trying to go. And hopefully, they’ll be there soon.
Finding a treatment that’s aimed at one of the mutations you have – the goal of precision medicine. That’s pretty exciting. Any other things that you might want to consider? How do find out about new treatments? There’s so many new treatments first that are FDA-approved and available. But there are also a lot of treatments and clinical trials. I know when I was newly diagnosed, I had no idea what was available to treat multiple myeloma. I didn’t even know if I had a choice of treatments. I just blindly followed my doctor’s orders. My doctor told me what he thought was best, and I said yes.
But now I know there are so many treatments. How do you find out information about them so that you can have that engaged discussion with your doctor?
Selinexor – the newest one that was approved – one of the gentlemen in our support group has been on it for eight months on a trial. So, we watched him go from literally look like he’s dying to dancing the jig. It’s awesome. So, knowing people who are on that particular drug or whatever and then inquiring about it because I know Krissy is starting with that as well. That’s how we learn. And we just learn everything from the IMF. I learn on online and from our support group. Deena is an amazing support group leader.
Great. So, you learn information through your in-person support group –
– and through talking to someone else who’s been on that treatment. Other ways we could gather information about treatment options? Alan, do they talk about treatment options in some of your online support groups?
They do. I see a lot of information about that. I’m an administrator on a Facebook group for a particular drug. So, I see a lot of people making comments about different treatment options that they’re doing and their success.
I probably don’t put as much research into this as a lot of people do. I’ve battled the fight of not becoming my disease is what I call it. You can’t overwhelm yourself with information. I’m a big picture guy anyway. I’m not an engineer type-like. My wife is. Her dad was a retired engineer. So, she wants all the little details. I just want the big picture. When I go in, they do my test. I just wanna know good or bad. That’s all I wanna know. I would have to say that talking to people that have the disease and their experiences probably has a bigger impact on me than anything. Because I believe that sometimes studies can be skewed, and I like personal knowledge.
Anybody else? Anyone actually go to the studies and read the studies or abstracts of the studies or ask their doctors about studies?
I thought you would sneak up. You’re in my support group. I know you talk about those studies, so do I. Go ahead. Talk a little bit more Mike.
I am the detail guy on that. So, I do read the studies. I’m on the institutional review board for the cancer center that I’m treated at. So, I get to see some of the trials even before they start. I’m fascinated by the disease and the science. If I take off my patient hat and put on my scientist hat, multiple myeloma is a really, really interesting disease. It’s a complex disease. It’s a complicated disease. And there’s a lot that we can learn about cancer in general by using multiple myeloma as a model cancer.
So, it’s fascinating to me to talk with my doctor about the research; and fortunately, he puts up with my dumb questions for the most part. So, to me, I just enjoy kind of understanding as much as I can about it. It gives me a sense of power. And maybe that’s an illusion, but it still helps. The more that I know, the more comfortable I feel about things. So, I do a lot of reading about it and keeping up with webcasts and so forth that are put on various foundations. And there are lots and lots of opportunities to learn. There’s a lot more to learn than I have time for, but it’s an interesting disease.
Mike, you and I are exact opposites, and we’d make a great team. You know that, right?
Yeah, even though we’re wearing similar shirts.
I’m glad we have such a varied panel today. It’s good having many different perspectives. Any other ways we educate ourselves about treatment options that are coming up?
I wanna add also that I try to participate in events like this. I do quite a bit of public speaking. I’ve been asked to be a PACE ambassador for one of the pharmaceutical companies. So, I travel around, and I get multiple myeloma specialists all over the country. So, I’ve learned a lot through those conversations. And I think it’s important for us to do things like this to give back. We all know how scary it is when we’re first diagnosed. And if we can do something like this or help somebody that’s newly diagnosed, I mean we’ve done a great thing.
Right. I agree with you 100 percent. Being a retired teacher, it’s in me to help educate others because I really truly believe that knowledge is power. And there has to be just a variety of ways, whether it’s through teleconferences or online support groups or in-person support groups or mentoring, there’s just so many ways that you give back and help someone.
To me, the first of the unknown is worse than the actual treatments.
Exactly. And being able to talk to someone who’s been in your shoes is the absolute best.
Do you mind if I share something with you real quick?
I mentioned that I went fishing four or five weeks after my second stem cell transplant. While I was there, I got a phone call from one of my clients, and one of her good friends had just been diagnosed with multiple myeloma. And he was gonna be treated where I was. And I was able to – she wanted me to talk to him. So, I called him. I shared my story. I told him how bad I was. And he said, “Well, I’m nothing like that. They caught mine early.” But I said, “Well, you understand my situation was serious.” I said, “I’d like to tell you where I am now. He said, “Okay.” I said I’m in South Louisiana fishing with my dad and my sons.” And he said, “You’re kidding!” I said, “No, I caught a 30-pound fish last night. I’ll send you a picture in a minute.” And just to hear the change in his voice, the tone of his voice, to give him that encouragement that everything was gonna be okay –
– was an amazing feeling. About a year and a half later, I was fishing again in South Louisiana. And I only go a few times a year at most. And I got a phone call, similar situation – a single dad with a 13-year-old daughter. And I got to share my story with them. I got her – I got them on speakerphone so they could both hear me. My daughter was 14 when I was diagnosed. I will never forget that – being able to talk to them and encourage them because we all know how important your attitude plays a part in our recovery.
Exactly. Thank you so much for sharing that very personal story. And I’m sure we all have a similar story of a way that we spoke to someone and probably made a difference at that point in their journey. So, we’re coming to the end of our program. What are some things that you know now that you wished you’d knew then about making treatment decisions? Anything that you know now that you wished you knew in the past?
I think one of the things I’ve learned is not to self-diagnose. I think when – it took nine months to get my myeloma diagnosis. I had broken a rib previously. And so, after that race, I thought I had just broken another rib. And it got better and went away. And a couple of months later when I turned over in bed, it felt like a knife going through me and took my breath away. And then another two months went by. I thought – well, I just re-broke it. Another two months went by and same thing, turned on my side in bed at night, and it went another knife through me.
So, I just even competed in some other races that summer. And I didn’t quite feel like I could go as fast as I wanted to or I might really do some serious damage. And that’s when I knew I needed to see a doctor. And I did, and I got bronchitis. And they first treated me and checked out everything for heart and didn’t find anything. And then, when I got the bronchitis, I went back to the doctor. And that’s when they decided to send me to a specialist, and he just touched my sternum and realized it was deformed and said he didn’t even wanna touch it until he got some images. And that’s when he – after the images that he got, he referred me to the West Michigan Cancer Center for further diagnosis.
Josine, any final words of wisdom?
Well, like Connie was saying about self-diagnosis. I thought I hurt my back at work. If I had only heard the words multiple myeloma in life growing up, which I never heard of it until diagnosis, I think it would’ve been less painful a journey to say the least. Well, you know, it’s all part of everybody’s journey. And we’re here today, and every day’s a gift.
As far as things I wish I would’ve known; I wish I would’ve known how hard the battle would be after the major treatments. It took me a long time to bounce back. My immune system just wasn’t very good. I kept pushing myself probably harder than I should have, but it goes back to the same thing – is do things that you don’t feel like doing. Push yourself to do the things – there are days when I don’t feel like getting up out of bed, even today. For the last week and a half, I’ve been fighting a cold. I actually – Thursday before last, me and my oldest son took our four-wheel drives to an off-road event and camped out for the weekend. Of course, I got sick the day we got there. But we had a great time and made some great memories, and the price was well worth it.
And that’s kind of the attitude that I have. I know that there’s a price to be paid at times for the things that I do, but every day is just a blessing. Every day is an opportunity to have a positive impact on somebody else’s life, and every day is a day to make memories with my family and my friends and the people I love. And put your focus there.
The way that I put it in my talks is – we will find in life whatever we look for. If we look for reasons to be sad and upset and depressed, we will find those. If we look for reasons to smile and be happy, we will find those also.
That’s true. Very good. I could listen to your words of advice all day long, but we don’t have all day. So, how about Mike. Do you have any final words of wisdom? Advice?
I guess the thing that comes to my mind that I know now that I didn’t know at the beginning – there’s so much. I didn’t know anything. But I realize now that I’m not alone. I felt very alone at first, but I’m not alone, and I’m not alone in lots of different senses. One sense is that there are other patients and other folks who are going through multiple myeloma just like I am. And so, a forum like this is really important to be participating in. I believe participating in in-person support groups is important, online support groups.
So, just realizing that you’re not alone is a key thing. And another way that I’m not alone is I have a wonderful team of doctors and nurses and healthcare professionals working to make me as well as I can be. And then I also am very blessed to have great friends and family. So, just knowing that I’m not alone is a key, key thing.
I like that. I’m not alone. Very good. Well, we’ve come to the end of our time. I think we learned a lot of great information between each other, and I’m hoping that it’s gonna be very beneficial to the myeloma community. So, to our audience, thank you for joining us for this Patient Empowerment Network programming, Myeloma Patient Café. I am
Cindy Chmielewski. And remember that this fifth -grade teacher says, “Knowledge is power and is your best medicine of all.” Thank you very much for joining us.
Please remember the opinions expressed on Patient Empowerment Network (PEN) are not necessarily the views of our sponsors, contributors, partners or PEN. Our discussions are not a substitute for seeking medical advice or care from your own doctor. That’s how you’ll get care that’s most appropriate for you.
Dr. Nina Shah, a specialist in multiple myeloma, discusses what newly diagnosed myeloma patients need to know.
Dr. Nina Shah is a specialist in blood diseases who focuses on treating multiple myeloma at University of California San Francisco. More about this expert here.
Hi, and welcome to the Patient Empowerment Network Program. My name’s John Rosengard, and I’m a myeloma patient survivor. I just wanted to tell you a little bit about our program today. I’m joined by my hematologist and oncologist, Dr. Nina Shah, from the University of California San Francisco. Dr. Shah, could you give us a little bit of your background, please?
Dr. Nina Shah:
Hi. My name’s Nina. I’m really thrilled to be here at this event. I have been at the University of California San Francisco since 2017. And before that, I was at MD Anderson Cancer Center. My clinical focus is in multiple myeloma, and my research focus is in immunotherapy and cellular therapy for multiple myeloma. I look after hundreds of patients with multiple myeloma, and our clinic here at UCSF as 1,500 active myeloma patients, and I really love participating in a mixture of clinical trials, which includes antibody therapy, novel drug combinations, novel agents, phase one trials, and chimeric antigen receptor T-cells or CAR T-cells.
That’s great. Thank you. I’ll give a brief rundown of my myeloma journey for other patients who may be tuning into this. I learned that I had multiple myeloma from the back-pain route, I guess I’d call it. I was diagnosed at UCSF in November of 2017 and started my treatment with Dr. Shah a few weeks later. The treatment involved me joining a four medication clinical trial and then having an autologous stem cell transplant a few months later in May of 2018.
After that, moved into the consolidation and maintenance phases of treatment. Consolidation brought back my quality of life pretty quickly, but, in maintenance, which will stretch out for another year to come, really just means testing and monthly infusions for me. Dr. Shah, do you have anything else to add about the clinical trials that I’m involved in or how patients might navigate the clinical trial process?
Dr. Nina Shah:
Yeah. So, it was a great partnership that you and I had for the clinical trial, and one of the things that this particular trial was looking at is understanding how many drugs are good for a myeloma patient upfront. As you know, we – the standard now, give three drugs upfront, but this explored possibly using an additional drug. And in your case, this drug was daratumumab, which is an immunotherapy. It’s interesting that we’re having this interview today because this drug, daratumumab, was just FDA approved to be given, upfront, exactly in your setting, with a transplant.
And so, even though your study is still maturing, the study before yours is confirming sort of what we thought might be true. So, it’s hard to say every detail that goes along with getting into a clinical trial, but I think one of the things that’s really important is a really nice conversation and partnership between the patient and the provider because it’s our responsibility, as providers, to explain the disease, why it happens, what are the clinical manifestations, what pain you may be having, what other things might be abnormal in your labs and, for you, as a patient, to feel like your symptoms are being addressed, but then, also, what there is as a clear plan for your treatment.
And in this way, the discussion about clinical trials really naturally enters because, if there is a clinical trial available, even in the upfront setting, like as what’s happened to you, it’s worth it to consider because that gives an additional opportunity for the patient and the physician to talk more about the disease and also talk about, what are the ongoing questions that we have in our study of multiple Myeloma? So, in this way, I think the conversation between the patient and the physician can help not only to understand the disease better, but also understand clinical trial options together.
Yeah, absolutely. The treatment selection process I found to be enormously important because, again, it’s the first part of fighting multiple myeloma directly. To piggyback off what you just said, some people might think that having a clinical trial as their front line or first treatment is a little unusual, but I didn’t think so. My initial reaction and research was that the T-cell therapies or the CAR T treatment option, which was still incredibly new and innovative in 2017, was really for serious relapse and refractory cases. And those patients were getting access to CAR T-cells first, and that counted me out as a frontline or a first-time newly diagnosed patient.
But also, some evidence was really coming out. The three-drug therapies were adding years of high-quality life as opposed to the two drug therapies that were used not that long ago. The research, however, was a little contradictory because none of the information that I found in that first faithful Google search was dated. So, I would find information from 10 years ago that was incredibly pessimistic about the options and the number of years of high-quality life, as well as the, I’d say, turnover in treatment options and the aggressive number of clinical trials that were being offered within the Myeloma patient community.
That didn’t come out until, I guess, my second or third faithful Google search, but it was really helpful as a layperson because my initial reaction was additional medications. And I brought along a show and tell for us. Here’s the additional medications.
Dr. Nina Shah:
– and here’s the backup if those don’t work. I don’t take those now, but it’s not inconsequential to say, “It’s really important to understand the multiplying effect.” I’ll call it that as a layperson. The multiplying effect and the quick or measurable response. So, for newly diagnosed patients and their caregivers who might notice that treatment selection is a vital first step of the process, Dr. Shah, that requires learning a new vocabulary and acting when clearer data is ready and available. What general processes do you try to bring to a new patient when they’re just getting started on this journey?
Dr. Nina Shah:
Yeah, I think you make a really good point that the availability of information can be a blessing and a curse. So, a lot of my patients – actually, even in the past 10 years, I’ve noticed a difference, that people coming in and they know more about the disease because of things like Google and other information portals that we have, which I think is great, but also absolutely needs to be digested with a little bit of context from each patient’s particular case.
So, I think one of the main things that we, as providers, can do is educate the patient on how this disease comes about, and that’s one of the first things I do when I meet a patient. Saying, “Okay, do you know what you have? Has someone told you?” Because even if not everybody has a medical or science background, it’s pretty simple to explain that myeloma itself is a cancer of one of the immune cells and what the things happen – what they’ve happened because of that particular cell growing. And if patients can understand that, then they can look at their labs and interpret their data because, remember, now, we all have access to our labs, which a lot of my patients didn’t have 10 years ago, and we look.
We look at our little portals, and we try to see what the lab values are, what the anemia is, etc. And one thing that’s really critical to interpreting myeloma labs, for many patients, not all, is understanding the myeloma profile, which includes the SPEP, or serum protein electrophoresis, and then the light chain, the free kappa, free lambda, and sometimes the urine protein electrophoresis. And learning how to read those three things can actually help a patient feel very empowered because they don’t have to wait for every visit to talk to the doctor about their results. And the honest truth is, sometimes, every doctor doesn’t have time to e-mail every patient after every result. So, it’s a good way to get educated upfront, empower the patient, and say, “Okay, I now know how to interpret my labs, and I will work with you. You and I are gonna work together. If we see something abnormal together, we’ll chase it.”
And similarly, the bone marrow results – because those are also – I mean, even doctors have a hard time interpreting those. It’s important to go over the actual words that mean something to both the doctor and the patient at the initial diagnosis. And I think that’s another way that people can be empowered as they start their journey.
Would you say that it’s easy or difficult for a patient or a caregiver to get bogged down in detail as they’re picking up the vocabulary, picking up the processes available to them?
Dr. Nina Shah:
Yeah, I think that’s definitely patient dependent and caregiver dependent. What I’ve noticed – and I know I have a skewed perspective because I practice at an academic center, but what I’ve noticed is that a lot of people want to know. They want to know the details, and, at first, it’s a lot of information to digest because, the day that they’re seeing you for the first time, we’re talking about disease and prognosis and risk. And maybe, the second time, we’re talking about treatment and eventual transplant. But each time, I do show or I talk about their “markers”, and we talk about the labs. Each time that we have a visit, it’s a chance for patients to get more details and to digest those details more.
So, if-if they’re detail-oriented, that actually ends up being a good thing, uh, because then, as time goes on, they feel like, “Okay, I have an idea of what’s going on. I know what to look for.” But that doesn’t mean you have to be. Some patients would rather just have their provider tell them what they need to know, and they don’t wanna be a slave to the lab, and that’s fine, too. Either way is fine as long as both the patient and the provider know how to navigate each system.
I think that one of the things that you kind of already brought up is what tools that you guys, as patients, have, particularly within electronic medical records, and this is actually something relatively new for all of us. Like I said, 10 years ago, we didn’t use it as much. But now, you have things like the MyChart app, and then you have social media. We have patient advocacy groups. If you had to look at all that, what would you say is the most useful for you?
I’d say, a little selfishly, it was following your suggestion to follow you on Twitter, to keep up with the research because you’re a great filter for all of the content that’s out there. I know a few of the doctors that are very active in the multiple myeloma community are thoroughly well published. They’re speaking on a regular basis. And your Twitter feed, by the way, ninashah33 – just ninashah33 all one term.
You filter that out for me, so I have a running chance at actually finishing it in an hour when I pull it up because the content that you bring together is some highlights about what medications are working, what therapies are coming out that are that are combinations of medications – stem cell transplant, CAR T-cell therapy, and so on.
And in getting up the learning curve, which I think every patient and caregiver has got a duty to do, is a lot easier if there’s someone saying that there’s some raw research in the UK. There’s some raw research in these medical centers here in the U.S. Follow them. Follow these doctors. You’ll get a good read on what’s the curve. I think that that was a lifesaver because I could’ve really spent 10 hours a week just getting background and just getting comfortable with the content. And at some points, it was a little unnerving to find out that there’s a 50/50 chance of the life expectancy being measured in a very short time span versus having the forecast that you could really be returning to your life.
But I travel quite a bit for my work. You travel quite a bit for your work. To be able to get back to that pretty quickly was evident a month after my stem cell transplant, which I remember ticked you off a little bit that I should be just saying that I can’t just stroll in the San Francisco Airport and go wherever I wanted to. I had to give a little bit of thought about my compromised immune system, which I well and truly did. But again, going off of the filtered information as opposed to the raw information was a big plus for me.
Dr. Nina Shah:
Yeah, I mean, that was one of the things, I think, for you and I, as a doctor/patient relationship, that I saw you were really focusing on things – that you wouldn’t ask, necessarily, “Okay, when’s this gonna be cured? When’s this gonna be cured?” But rather, “Okay, I know that there can be times between my state right now and eventual potential progression or not, and how do you tell a patient – if you see a patient who’s newly diagnosed, how do you tell them to focus on those types of things so that they can bite off small pieces and go day to day, get back to their life, and not focus on just one thing about, “Oh, is this gonna be cured ever?” What advice do you think you can help people with that?
Well, my first thing is – and this is me being me, but I built a spreadsheet. I built a giant spreadsheet of my lab data, going back to, really, the 1990s. Nothing to do with UCSF’s treatment, but just I wanted to put it all in one place so I had just a reference point to start with.
And it gave me a silly sense of control, I guess, to say, “I can now detect if there’s a very, very slight change in the IgG kappa reading from month to month to month. I can be on top of it just like you are.” That doesn’t give me an MD or a license to practice medicine, but it gives me the ability to at least say, “Is this anything to be concerned about, or is this still in the error bar of I’m still okay? And we haven’t gone up here. We haven’t gone down here. We’re still sort of moving along over time.”
And that comfort level of just building some sensitivity to what data mattered and what data could still move around and be perfectly normal, that sensitivity that’s – Microsoft Excel doesn’t give you that. The raw lab data doesn’t give you that. That’s where your position and honest conversation can take you to a good understanding of how those different variables interplay with one another and how a sudden spike in one can be indicative of nothing more than having a cold or picking up the flu, unfortunately, during that time of the year, cold and flu season.
Dr. Nina Shah:
Yeah. Yeah, I think that, patients like you, who are either, maybe, just starting therapy or maybe just starting to get engaged with their process, trying to have more control, power, and, also, education about what they’re doing, it’s really important to ask questions to their provider. And what you said is right. You’re looking at the labs on the spreadsheet. I’m looking at it at the electronic medical record. We’re both human, so I may miss something. And I try not to, but – and you may catch something.
Even though we have our “roles” as provider and patient, we are on this together. So, I think it’s really important for patients to ask things of their doctor. They should never feel shy. I know it’s sort of hard because you’re talking to a stranger and, yet, someone you have a relationship with. So, it’s kinda interesting. You may not want to question that person, but you should with all our capable thinking and processing information different ways. And it’s really nice – I actually like it when the patients ask me, “Well, what do you think about that?” And I may have not thought about it in the way that they’re thinking about it because they may tie it into a symptom that they’re having, or, like you said, you may have a virus or something and say, “I have this virus,” and maybe I was worried about this IgG, but it turns out that you had a recent virus. So, they’re all ways that we can put information together and, more information, the better.
So, one thing I would just say to patients and what I feel like you benefit from is, ask questions. Ask questions about lab interpretations, about what next steps are, just questions about what’s been going on lately. And I think that will give education and, I think, ultimately, will give the patient more power.
Mm-hmm. And just to go a little further into that point, every month, I come in for my lab work as part of the participation in the clinical trial. Other patients may be coming in on a less frequent basis, perhaps every 90 or 180 days or once a year if they’ve got a, for example, smoldering myeloma or other conditions. My point in bringing this up is that one of those may be – and if we all live long enough, one of those probably will be – one to say, “It’s not getting better, and this condition is getting a little worse.” That’s another step I’m ready for, to just say, “What are our options at that point? What treatment options do we have available?”
Because it’s not a one and done. It’s not like having a broken bone where you can just say, “Set it, get it in a cast, take good care of it, and keep the weight off of it. And then, six to eight weeks later, something new will be ready to happen.” This is an ongoing battle with them and being a part of a clinical trial that does help the 30,000 newly diagnosed multiple myeloma patients here in the U.S. be a little closer to some effective treatments is, I think, all part of the healthy part of the equation. Any further thoughts on first steps for those newly diagnosed patients?
Dr. Nina Shah:
Yeah. I think, as you already mentioned, things like the Patient Power website, Myeloma Crowd, healthtree.org, Myeloma Beacon, MMRF – all of these are really important places where patients can get good quality information. I like hearing that my patients have gotten information from other people. It’s okay to get a second opinion. It’s totally fine. You should feel in control of your health and your decision making.
Absolutely. Just a little bit about Dr. Shah, from my perspective, she’s my go-to person for multiple myeloma at UCSF, but UCSF is like any big institution. If you like processes, multiple myeloma is your condition. If you want to talk about faster infusions, because they might be taking too long, there’s a team, but she’s not the right person to talk to directly. If you wanna understand lab results, she’s the right person. But if you have trouble logging in or with the helpline being available for you, there’s a team for that. If you have questions about billing and insurance, there’s another team for that. Team management support groups, another team.
UCSF has got depth and strength, and other regional medical centers that have, I guess, the specialists, rather – a large specialist team in multiple myeloma – will, inevitably, have that layering of people. And I found that my treatment team grew from my one best friend or two best friends, my general practitioner here in the Bay Area, California – it grew to 10 people to include Dr. Shah, and then it grew to 25 people. Before I knew it, I had 25 best friends who wanted to know how I was doing and how my symptoms were relative to subsequent treatment stages.
And it took time for me to get to know them and for them to get to know me, but that investment of time and effort to, again, be part of the team and be part of the equation and processes was an important part of just getting through the clinical trial efficiently and effectively and then just being ready for the next steps of, again, prospectively, full remission, relapse, refractory, and just a whole variety of outcomes that have yet to play out over the years and decades to come.
So, with that in mind, I just wanted to move on to a couple of questions that have come up from different participants at the Patient Power website. The copays for multiple myeloma drugs can be very expensive. Any advice on how to deal with that, or are there programs that can help?
Dr. Nina Shah:
Yeah, this is a really important question. I’ve frequently noticed this, especially in my Medicare population, particularly with oral chemotherapy, for example, lenalidomide. There are patient assistance programs, which are company-specific, and you can ask the company directly. They usually have a hotline, or you can ask, at your particular oncologist office, if they have a connection with a local area rep who can put you in contact with that helpline. This is a frustrating part, and what I’ve been trying to do is, when I meet with a lot of these representatives, I try to take your complaint about this to them directly and say, “Look, my patients are not gonna get your drugs if it’s not affordable.” And ultimately, that means that that drug company needs to work with all the insurance companies, including Medicare drug coverage, to supply this for patients. So, that’s what I can do on my end. And then, from your end, really working with the patient assistance programs. They do exist, but they’re a pain. They’re one more thing you have to do, which it’s hard for us to tell you, but we also want you to get the drug.
Second question comes from Jefferey. It’s been two years since I was diagnosed with smoldering myeloma. My oncologist said that my numbers are not at a point for treatment today, but he has me doing bloodwork and bone x-rays every three months. This is causing me a lot of stress and mental anxiety. Is this a normal situation to be diagnosed and not doing anything about it? Any advice on how to cope with the stress and anxiety of waiting to be treated? What do you think, Dr. Shah?
Dr. Nina Shah:
Yeah, this is a really important question because there are a lot of patients out there who are diagnosed with smoldering multiple myeloma, or what we call asymptomatic myeloma, meaning that you have some plasma cells in your bone marrow, and you also have some evidence of M-protein or light chain, but you don’t have enough to require treatment, and the first thing I can say is there’s reason for that; because, as of now, we don’t have any data to show that treating you early before you develop symptoms is going to prolong your life.
That being said, there are some clinical trials that look at patients, what we call high-risk smoldering myeloma, to be enrolled in clinical trials of treatment versus not. I have mixed feelings on this because I’m one of those people that likes to preserve quality of life as much as possible, and most of my smoldering myeloma patients are full-time at work, not doing anything else. And so, what I always tell these patients – and I don’t wanna put this on every other physician out there, but I always say, “Let me do the worrying. You come in for your labs. You come in for your assessment.”
I usually do a bone marrow and either PET or MRI every year because that can change decisions. But I always tell my patients, get the labs, walk out of the lab building – out of your Quest or whatever it is – and let me do the worrying because there is nothing you can change, and I want it to be something that’s just a part of monitoring but not anxiety. In response to the question, it is totally normal to get that frequency of checking, and that’s really on us, as a partnership, to make sure that you feel comfortable with that frequency, but also that your provider is checking up on the labs when they come to the boss.
What do you think are some of the mistakes that a newly diagnosed patient can make about their treatment or about their recovery?
Dr. Nina Shah:
Well, that’s a hard question because I think the patient, really, can never make a mistake because, ultimately, it’s about what the patient wants. But I will say that, a lot of times, patients think that they can not get treatment for symptomatic myeloma. For example, they have a new plasmacytoma on their shoulder or have broken a bone or a new anemia. And they’ll say, “Well, I just wanna use natural means to get rid of this.”
And I don’t have any problems with natural medicine or anything like that, but my education and experience has taught me that it’s not gonna be enough to stave off this really aggressive malignancy, and the last thing I want someone to do is to break a bone in their spine and then become paralyzed. So, I always say, “I’m happy to work with you and whoever your naturopath is or whoever your other physician is, but I truly feel that you need treatment, and then I want that to get through to you.” And that’s just my experience. But again, I always do try to respect what the patient’s wishes are.
Another participant on the Patient Power website asks, “Is there a resource for local oncologists to reach out for information and collaboration about multiple myeloma?”
Dr. Nina Shah:
Yeah. Now, depending on where you are, you’re probably in touch with the local, maybe, academic hospital, and it’s hard to know – just depends on where you are in the U.S. But I really do like going to the Multiple Myeloma Research Foundation website because they have information there, and you can actually contact them, and they would be able to put you in touch with someone who might be a myeloma expert. I mean, you already said it. You can even look on Twitter and follow myeloma feeds and actually do a direct message to any one of us. Usually, one of us gets the message, and we’ll respond back.
Most everyone has a way to contact through the American Society of Hematology. That’s another way that physicians who are hematologists contact each other. If you really want to get your doctor to somebody who’s a myeloma expert, it should not take more than three tries of contacting this person or that person to be able to get through. My email is public, and other people’s are as well, and I usually respond. So, it’s more a question of making that initial effort. Okay, I’m gonna go through a web search and find this person’s e-mail and send them a message. But we are always willing and happy to answer these questions because, a lot of times, these patients may wanna come for a second opinion or consider a clinical trial or just need some advice, and that’s totally fine.
Just to add to that, Dr. Shah, one of the things that I’ve noted from MMRF and other organizations is, periodically, there are patient summits that are offered all over the country, and they’re generally – in my experience so far, is that there are at least 500 to 3,000-person beds. They’re quite large, and it may be, I guess, comforting, to a degree, to meet and be met by others that have the same concerns about multiple myeloma as a patient or a caregiver and see that there is some strength in numbers. Do you have any closing thoughts on our talk today?
Dr. Nina Shah:
Yeah. I really like the point you said about meeting other people with this disease and other caregivers. We’re fortunate enough, in the Bay Area, to have a patient-centered support group, and I really like doing programs with them.
And what I’ve noticed about all the patients who attend something like that, even if it’s a cancer, in general, support group, is that they can share stories and sort of talk. I mean, it’s important. It’s a really huge thing you’re going through, and you need to talk to other people about it and people who understand. So, it’s great to get a support group even if it’s just cancer, even better if you have a myeloma support group. And online, there are support groups as well. So, whatever you can do to make yourself feel not alone will also add to your empowerment.
Well, thank you, Dr. Shah. It’s been great catching up with you today. Thank you for participating in this event, and that is it for us. Thanks for joining us.
Please remember the opinions expressed on Patient Empowerment Network (PEN) are not necessarily the views of our sponsors, contributors, partners or PEN. Our discussions are not a substitute for seeking medical advice or care from your own doctor. That’s how you’ll get care that’s most appropriate for you.
More about Multiple Myeloma
Cancer, the abnormal growth of cells that multiply aggressively, has become one of the most prevalent diseases in today’s time. Diagnosis marks one of the most challenging periods in a person’s life. Although curable at early stages, the malignancy itself and the side-effects of treatment change the sufferer’s life at a significant scale.
Lymphocytes represent a major component of the body’s immune system. There are two types of lymphocytes, T lymphocytes and B lymphocytes, and both are crucial for fighting pathogens. When the B lymphocytes respond to a foreign body, they mature into plasma cells and memory cells. The plasma cell is responsible for making immunoglobulins, also known as antibodies, specific to that particular pathogen. These antibodies are the most important precursors in the defense mechanism of the body.
Multiple Myeloma is a type of cancer that seeds itself in these plasma cells that comprise the body’s major immune component. Plasma cells are the prime fighters against foreign organisms such as bacteria, virus, and fungi. Their tendency to engulf the opponent malfunctions and thus the immunity gets badly affected in Multiple Myeloma.
The studies show that Multiple Myeloma is more common in Africa than any other part of the world. The rationale behind this etiology is unclear but it might be a result of being deprived of health-building resources.
Pathophysiology of Multiple Myeloma
Multiple Myeloma usually presents as destructive plasma cell tumors (plasmacytomas) involving the axial skeleton. The bones most commonly affected (in descending order of frequency) are the vertebral column, ribs, skull, pelvis, femur, clavicle, and scapula. Lesions begin in the medullary cavity of the bone, erode cancellous bone, and progressively destroy the bony cortex, often leading to pathologic fractures; these are most common in the vertebral column but may occur in any affected bone. The bone lesions appear radiographically as punched-out defects, usually 1 to 4 cm in diameter, and consist of soft, gelatinous, red tumor masses. Less commonly, bone disease produces diffuse demineralization (osteopenia) rather than focal defects.
In advanced disease, plasma cell infiltrates may be present in the spleen, liver, kidneys, lungs, lymph nodes, and other soft tissues. Commonly, the high level of M proteins causes red cells in peripheral blood smears to stick to one another in linear arrays, a finding referred to as rouleaux formation. Rouleaux formation is characteristic but not specific, as it may be seen in other conditions in which lg levels are elevated, such as lupus erythematosus and early HIV infection. Rarely, tumor cells flood the peripheral blood, giving rise to plasma cell leukemia.
Bence Jones proteins are excreted in the kidney and contribute to a form of the renal disease called myeloma kidney.
Causes and risk factors for Multiple Myeloma
Although the cause of multiple myeloma is not known, certain risk factors can contribute to it.
1. Toxic chemicals
Toxic, cancer-causing chemicals include benzene-infused products, products that contain sulfates and parabens, fire retardants, dioxins, polychlorinated biphenyls (PCBs) and polybrominated diphenyl ethers (PBDEs). These all are said to be the highest cancer-causing agents. Out of all the chemicals, the ones containing chlorine are the ones that rank first in the production of cancer. Research has demonstrated the relationship between Multiple Myeloma and occupational exposure to six chlorinated solvents: 1,1,1-trichloroethane (TCA), trichloroethylene (TCE), methylene chloride (DCM), perchloroethylene (PCE), carbon tetrachloride, and chloroform, respectively. The occupational solvents here refer to those used in industries and factories.
The study concluded that among all six chlorinated agents, TCA showed the most elevated levels in leading to Multiple Myeloma.
2. Exposure to radiation
Workers at hospitals or diagnostic institutes are at higher risk of Multiple Myeloma. The radiation emitted is so powerful that it can surpass the skin, tissues, and muscles and can penetrate the bones to enter the bone marrow. A cohort study done in Mayak concluded that radiation emission greater than 1 Gy has significantly produced a higher risk of Lymphoma, Leukemia and Multiple Myeloma.
3. Viruses and immune disorders
Certain viruses have a correlation with Multiple Myeloma however, their association is still unknown. The viruses include:
Simian Virus 40: This is one of the most intense polyomaviruses. It induces primary brain and bone cancers. It’s oncogenic (cancer-causing) property makes it the major culprit in causing multiple myeloma.
Several herpes viruses: A study was conducted to evaluate the role of human herpesvirus 8 in the pathogenesis of multiple myeloma. Patients with Multiple Myeloma were selected, and their samples of blood were drawn and sent to the lab for testing. The study concluded that the majority of the patients with Multiple Myeloma showed the evidence of human herpesvirus 8 in their blood samples.
Apart from the above viruses, first degree relatives of patients with Multiple Myeloma may develop MGUS (monoclonal gammopathy of undetermined significance). Hepatic viruses and HIV have also proven to be linked to Multiple Myeloma.
As with many other diseases, Multiple Myeloma tends to run in families who have already been affected by it. In some cases, Multiple Myeloma goes undiagnosed in a principle patient who transfers it to several offspring before discovering it.
Patients aged 40 to 60 are at a higher risk to develop Multiple Myeloma.
Multiple Myeloma inflicts men more often than women. The cause is still unknown, but it could be due to hormonal differences. The male to female ratio is approximately 1.54 to 1.
The role of obesity in contributing to Multiple Myeloma is unclear, but it might be due to insulin resistance and improper functioning of the hormones.
African-Americans are twice as likely to have Multiple Myeloma than other races.
Clinical features of Multiple Myeloma
The clinical manifestations of Multiple Myeloma are due to malignant cells invading bone marrow, excess antibodies with abnormal properties being produced, and immune suppression.
Bone erosion by expanding marrow increases the susceptibility to pathological fractures. The dissolution of cortex increases the level of calcium in the blood leading to hypercalcemia, thus the neurological manifestations set in — such as confusion, weakness, lethargy, and constipation. Excess calcium reaching the glomerular membrane in the kidneys contribute to renal dysfunction. The renal impairment is already present in 20% of cases at the time of Multiple Myeloma diagnosis.
Decreased and defective production of immunoglobulins makes the person vulnerable to serious bacterial infections. The excess immunoglobulins are directly damaging to renal tubules thus producing proteinuria. The light chains of immunoglobulins secreted by the kidneys in Multiple Myeloma are called Bence Jones proteins.
Signs and symptoms of Multiple Myeloma
The signs and symptoms of Multiple Myeloma vary with the severity of the disease. Factors include:
1. Increased thirst and polyuria
The calcium from the bones dissolves into the bloodstream producing hypercalcemia and increased plasma osmolality which is sensed by the thirst center in the brain. This creates the paradox of increased thirst and polyuria to excrete excess calcium reaching the renal tubules.
2. Recurrent infections
The defective immune response of plasma cells decreases the humoral immunity in the body making the person susceptible to infections. The usual symptom is recurrent infections with common pathogenic organisms that are easily tackled by a healthy immune system.
3. Weight loss (cachexia)
Cancer cells have a high proliferation index and need excess energy and nutrition to thrive. They release mediators that ramp up the catabolic processes in the body, producing a cachexic state. This, combined with the loss of appetite and a general increase in nutritional demands to fight infections, escalates the weight loss.
4. Bone pains
The osteolytic activity in the bones makes them soft, brittle, and tender. Bone pain is mostly associated with the back and ribs because of increased marrow activity at these sites. Pathological fractures (bone fractures without a history of fall) occurs in long bones due to widespread osteopenia. Patients also complain of mobility issues secondary to bone weakness at joint site.
Other non-specific symptoms of Multiple Myeloma include:
- Shortness of breath
- Muscle fatigue
Diagnosis for Multiple Myeloma
As with other diseases, the investigations for Multiple Myeloma start with baseline tests and move toward more specific tools.
1. Blood tests
On the first suspicion of Multiple Myeloma, the physician may order the following blood investigations:
- Complete blood count (CBC) to see changing blood cell indexes as a consequence of marrow failure
- Complete Metabolic profile will show serum electrolyte levels, especially calcium and phosphate whose high levels are usually associated with Multiple Myeloma.
- Serum Protein electrophoresis is rather a specific test that separates all the blood proteins, including the immunoglobulins (Ig), over a gel medium. The high concentration of Igs is specific to MM diagnosis.
- Serum Free Light Chain (FLC) assay, performed on a blood sample, FLC assay is used for both the diagnosis and monitoring of Multiple Myeloma.
2. Urine tests
- Complete Urine Examination (CUE) reveals the presence of proteinuria due to renal damage and the excess secretion of light chain immunoglobins (Bence Johns proteins). The CUE also shows any cellular debris and calcium crystals excreted along with increased urine osmolality.
- Urine protein electrophoresis reports the concentration of proteins excreted by the kidneys.
For skeletal changes, radiography studies are required to see the extent of disease, presence of bone deformities (osteopenia, fractures, etc), response to treatment, and prognosis of the disease. These are:
- X-ray, taken of the painful bone or immobile joint.
- CT-scan, a more advanced tool to study bone pathology
- MRI, the gold-standard imaging modality for the detection of bone marrow involvement in Multiple Myeloma. It is also a favored imaging modality to rule out spinal cord compression in such cases.
- PET-CT, provides valuable prognostic data and aids in the evaluation of response to the treatment regimen.
4. Bone Marrow
The gold standard of Multiple Myeloma diagnosis is the bone marrow biopsy. The marrow aspirate or tissue is taken from bone and is examined under a microscope. The marrow concentration of >10% of plasma cells is diagnostic of Multiple Myeloma. Even away from overt tumor masses, the marrow contains an increased number of plasma cells. The plasma cells may infiltrate the interstitium or be present in sheets that completely replace normal elements.
The classic triad of Multiple Myeloma consists of bone marrow plasmacytosis (>10% infiltration), osteolytic bone lesions, and the presence of myeloma proteins in the blood or urine. The presence of extramedullary masses in Multiple Myeloma is sufficient to reach the diagnosis even in the absence of bone lesions.
Treatment for Multiple Myeloma
There a several different treatment options for Multiple Myeloma.
1. Targeted therapy
Targeted therapy specifically targets malignant Multiple Myeloma cells and blocks their uncontrolled proliferation. Bortezomib (Velcade), carfilzomib (Kyprolis) and ixazomib (Ninlaro) are a few targeted drugs that block the synthesis of proteins in myeloma cells, halting their cell cycle. The targeted therapy has little to no side effects as it is only directed to malignant cells. Some monoclonal antibodies are also available that bind to specific receptors on myeloma cells and kill them.
2. Biological therapy
Compared to targeted therapy that targets myeloma cells, biological therapy modulates the body’s own immune system to attack myeloma cells. Thalidomide, lenalidomide, and pomalidomide “sensitize” the immune cells of the body that starts targeting the malignant cells.
The use of anti-cancer drugs either intravenously or orally to kill the cancerous cells is the mainstay of chemotherapy. The chemotherapeutic drugs affect all the cells in the body which culminates in their widespread side-effects. The drugs that are beneficial in Multiple Myeloma include cyclophosphamide, doxorubicin, melphalan, etoposide, cisplatin, and carmustine. Multiple combinations of drugs are used and their dose is repeated three times weekly to prevent toxicity and get optimal response. Prior to stem cell transplantation, a high-dose chemotherapy regimen is advised.
High energy ionizing radiations are not therapeutic for Multiple Myeloma but can be used to provide palliative care, for example, the relief of bone pain associated with this disease. In some circumstances, the plasma cell tumor may be localized (called plasmacytoma) for which radiotherapy can be curative.
Corticosteroids are well-known for their anti-inflammatory role in the body. They block the synthesis of inflammatory mediators that are responsible for the normal functioning of the immune system and antibody production. Corticosteroids such as prednisone and dexamethasone are the mainstay of treatment in Multiple Myeloma. Common side effects of corticosteroid therapy include gastric ulcers, osteoporosis, myalgias, hyperglycemia, and insomnia.
6. Bone marrow transplant
Stem cell transplants, also known as bone marrow transplants, are of two types: autologous transplants and allogeneic transplants. In the former, the donor stem cells are obtained from the patient’s own marrow and stored in vitro. They’re replanted after the high-dose chemotherapy to kill all the myeloma cells in affected the bone marrow. The process is the same for the allogeneic transplant, but the stem cells are obtained from a donor—a close relative.
What empowered patients need to know about Multiple Myeloma
This disease is a type of blood cancer that spreads through plasma cells and attacks bone marrow (the bone center). While healthy plasma cells typically help the human body to fight against infection, disease-affected plasma cells produce abnormal antibodies called M Protein.
M Protein might result in tumors or kidney damage, damaging bones and severely affecting the body’s immune system.
Multiple Myeloma is, in fact, a high level of M Protein in the human body. As Multiple Myeloma finds its roots in the body, affected plasma cells release chemicals that cause bones to dissolve. The affected area of bone is known as a lytic lesion. As it grows, plasma cells begin to seep out of bone marrow and cause more organ damage. Multiple Myeloma affects bone marrow in the spine, pelvic bones, ribs, shoulders, and hips. This disease most often affects people age 40 and older, and chances of developing it increase with age. It affects men twice as often as women. It is the second most common form of blood cancer and the first most common to affect the skeleton.
Causes of Multiple Myeloma
The actual cause of malignant (infectious) plasma cells is still unknown. Proteins produced as a result of disease cause thickening of blood and deposits of proteins in organs that can affect the functions of kidneys, immune system and nervous system. Viruses, radiation exposures, and immune disorders may also trigger the disease.
The Role of plasma cells in the body
Plasma cells are a type of white blood cell found in bone marrow. Plasma cells play an important role assisting the body to fight against external attacks. A major part of the body’s immune system, plasma cells produce disease-fighting proteins called immunoglobulins, or antibodies.
Plasma cells develop from a type of white blood cell called B cells. Plasma cells produce antibodies to fight with disease and infection. Plasma cells produce different antibodies based on different types of disease, so various antibodies are present in the human body.
What does Multiple Myeloma do to plasma cells?
In Multiple Myeloma, healthy plasma cells transform themselves into malignant plasma cells (Myeloma cells) through an intricate, multistep process. Myeloma cells produce large amounts of a single abnormal antibody called M protein. Unlike normal antibodies, M protein does not fight infection. Malignant plasma cells multiply themselves and start replacing healthy blood cells in the bone marrow, resulting in decreased numbers of red blood cells, white blood cells, and platelets.
In healthy bone marrow, another type of white blood cell known as a “B cell,” develops into an antibody-producing plasma cell when antigens enter the body. In Multiple Myeloma, DNA damage to B cells transforms normal plasma cells into malignant Multiple Myeloma cells. The cancerous cells multiply and start growing enormously thus making less room for normal plasma cells in bone marrow resultantly affecting the immune system to severe level.
How does this affect the body?
Multiple Myeloma plays the role of an enemy to the defensive system—the body’s white blood cells. As abnormal plasma cells start to replace normal cells, the reduction of healthy cells in the body causes anemia, excessive bleeding and decreased immunity. Growth of abnormal cells damages major body organs, such as the kidneys. In severe cases it causes tumors as well.
Most patients diagnosed with Multiple Myeloma have osteolytic lesions, which are weakened spots on bones. This bone destruction increases the risk of fractures. It can also lead to a serious condition called hypercalcemia (increased levels of calcium in the blood). (See “Signs and Symptoms”).
Diagnosis and risk factors of Multiple Myeloma
Researchers have made several advancements to identify how this disease develops, yet the exact cause of Multiple Myeloma remains unidentified. Genetic mutations have found to play a role in Multiple Myeloma. Genes are just like the codes, or more precisely instructions, DNA provides to form proteins. Approximately 30,000 genes make up the human genome. Each cell contains 23 pairs of chromosomes that can be read in different ways to lump together about three proteins each. Copying each cell includes generating 23 pairs of chromosomes. During this process protein formation mutations may alternate resulting in a severe effect on proteins made by genes. Such error in protein formation may cause cells to grow and divide in an unconventional manner resulting in cancerous cells.
Basic factors involved in Multiple myeloma disease, role of genetic mutation and chromosome translocations which include turning unnecessary genes on while turning off necessary genes. These translocations are observed in almost 40% of cases of Multiple Myeloma.
Specific mutations have been identified as genetic risk factors for both developing Multiple Myeloma and likelihood of early relapse. For instance, chromosome 13 is deleted in Multiple Myeloma cells in about half of all cases. Additionally, chromosomal translocations (where pieces of a chromosome are swapped, turning some genes on when they should be off and vice versa) are observed in about 40% of Multiple Myeloma cases.
Despite these known genetic risk factors, Multiple Myeloma, like all cancers, is heterogeneous, meaning each case is unique. The genetic mutations that cause Multiple Myeloma in one person often differ from those that cause it in another. In fact, MMRF initiatives such as the Multiple Myeloma Immunology Initiative study have shown that Multiple Myeloma has at least 12 different genetic subtypes, rather than a single genetic makeup.
Common sites for bone damage
Multiple myeloma affects skull bones, spine, pelvis, long bones and compression in spinal cord. This disease spreads slowly and shows its complete sign when completely takes over the major bones in the body, especially the skull bones.
In severe cases, complete vertebrae damage causes compression of the spinal cord. Loss of bone integrity can cause pathological fracture.
Mechanism of Disease
- Plasma cell proliferation: anemia, bone marrow suppression, infection risk.
- Osteoclasts : bony lesions, fractures, vertebral collapse, spinal cord compression.
- Paraprotein: renal failure.
- Hypercalcemia: thirst, drowsiness, coma, polyuria.
Signs and Symptoms of Multiple Myeloma
Based on Multiple Myeloma cases observed so far, following are the signs and symptoms of Multiple Myeloma:
- Nerve damage,
- Skin lesions (rash),
- Enlarged tongue (macroglossia),
- Bone tenderness or pain (including back pain, weakness, fatigue, or tiredness),
- Pathologic bone fractures,
- Back pain,
- Spinal cord compression,
- Kidney failure and/or other end-organ damage,
- Loss of appetite and weight loss,
- Hypercalcemia (high levels of calcium in the blood), and
- Leg swelling.
Is Multiple Myeloma hereditary?
Multiple Myeloma is not considered a hereditary disease. While in some cases Multiple Myeloma may occur due to genetic abnormality, there is no evidence that heredity plays any role in its development. Research has shown several factors may contribute towards the development of Multiple Myeloma. While researchers have indicated a very slight chance that disease could be transferred from parents to their offspring, it’s very uncommon for more than one member of a family to have multiple myeloma.
Stages of Multiple Myeloma
Progressive stages of Multiple Myeloma have been recognized as follows:
- Smoldering: Multiple myeloma with no symptoms.
- Stage I: Starts with anemia, relatively small amount of M protein, no bone damage.
- Stage II: Severe anemia and M protein as well as bone damage.
- Stage III: Huge concentration of M protein, anemia, kidney damage.
Tests types for diagnosis of Multiple Myeloma
Diagnosis includes a study of past medical history and a physical examination of the patient. Bloodwork can then check platelet counts for a drastic reduction in white blood cells. Blood chemistry tests may include tests for BUN (blood urea nitrogen), creatinine levels, or uric acid. A bone marrow biopsy and aspiration can further examine the concentration of abnormal plasma cells in bone marrow.
Urine tests check the body’s protein level. A UPEP (urine protein electrophoresis) test checks the level of M Protein in the blood. UIFE (urine immunofixation electrophoresis) identifies the type of M Proteins present in the urine.
Genetic tests can check for abnormal chromosomes and genes. Different types of tests can examine cellular health. Bone marrow cells grow to make cells divide, so dividing cells can be examined. Plasma cells proliferation can be tested to identify the rate at which cells are dividing. A large number of cells dividing is a sign that cancer is growing fast.
Imaging tests take pictures inside of the patient’s body. These tests are easy to undergo.
Bone survey imaging includes use of X-Rays to take pictures of your skeleton. As Multiple Myeloma causes major bone damage, a bone survey depicts exactly how many and which bones have been damaged due to the disease.
An MRI Scan uses radio waves and powerful magnets to scan the body. An MRI scan targets the bone marrow for observation. This type of test reveal abnormal areas in the bone marrow where the abnormal plasma cells have affected the bone marrow. This test is far better than a bone survey test, as it reveals minor details of the bone marrow.
Treatment of Multiple Myeloma
Treatment of Multiple Myeloma varies from patient to patient as cases become more and more complex. But some commonly treatment practices are explained briefly below.
Radiation therapy: Treats a small mass of affected cells. Radiation therapy normally targets the damaged part of bone (where cancerous cells have affected bone causing severe damage). Radiation therapy includes use of high energy rays to kill and stop growth of damaged cells stopping cancer growth. ERBT (external beam radiation therapy) is the most common type of therapy done.
Surgery: Involves removing or repairing of a body part. It can also fix the bones that have been damaged due to Multiple Myeloma.
Chemotherapy: Involves the use of drugs to kill the cancer cells. It kills the fast growing cells and in some cases it also damages bone marrow.
Stem Cell Transplant: Stem cell transplant replaces damaged cells in bone marrow with healthy plasma cells.
Order of Treatments: Different patients have been given different type of treatments based on type of areas affected. But the order of treatment remains the same. The initial treatment given is known as Primary Treatment, which includes the curing the cancer after the diagnosis. This treatment is also known as an Induction Treatment. the Second step is of Maintenance Treatment, which is done to keep cancer cells suppressed.
Survival chances of Multiple Myeloma patients
Statistics can be confusing because each Multiple Myeloma case varies from patient to patient.
Survival rates are measured from the first point of treatment, such as chemotherapy. In the past, patients often could not survive even beyond the first stage of treatment because when cancer cells grow fast they cause too much damage. Since 2000 the percent of patients living five years after diagnosis has been increasing considerably, for up to 50 percent of patients.
Lifestyle and diet tips for patients of Multiple Myeloma
The lifestyle advice for patients of Multiple Myeloma includes reducing or avoiding tobacco use and alcohol intake and exercising often. Patients should eat more fresh fruits and vegetables. During and after treatment severe weakness can be felt in bones and muscles which can covered by eating healthy and nutritious meals after every 2 to 3 hours. Inactive patients may start with short walks increasing the length or intensity daily until they can enjoy extended periods of movement and exercise time.
The cause of Multiple Myeloma, an infectious disease, is still unknown. Researchers have shown that disease is not hereditary disease. It is very rare that two persons in same family become affected by Multiple Myeloma. Finding a cure for Multiple Myeloma has proven very difficult.
It takes considerable time for patients to recover completely. For survivors, statistics show that damage done by this disease cannot be reversed one hundred percent. People who are 40 years old or more have fair chances of being affected by Multiple Myeloma disease. Extended research needs to be done to find the exact root cause of this disease so that upcoming generations can be saved. Survival rates are low compared to other fatal diseases.
Nurse Practitioner, Beth Faiman from the Cleveland Clinic, explains in maintenance therapy versus continuous therapy in multiple myeloma, which can sometimes be confusing.
Beth Faiman is a nurse practitioner in the department of hematologic oncology at Cleveland Clinic. More about this expert here.
I’d like to define the difference between maintenance therapy and continuous therapy. When patients have a stem cell transplant, they have a pre-therapy, the transplant consolidation is the second step, and then they have a maintenance to maintain that remission. For some people that don’t have a transplant, you can just stay on continuous doses of a therapy that’s very well tolerated. So, maintenance and continuous can sometimes be confused, but it’s — maintenance is lesser doses of something that got you into remission and continuous is just kind of staying on that same dose of tolerated medication.
Beth Faiman, a nurse practitioner specializing in multiple myeloma, discusses side effects in myeloma and shares what can be done to prevent or reduce these issues in patients.
Beth Faiman is a nurse practitioner in the department of hematologic oncology at Cleveland Clinic. More about this expert here.
In multiple myeloma, there are numerous side effects, but the most common side effects of treatment are oftentimes the lowering of blood count. So, for example, depending on which type of therapy you’re on, maybe it’s lenalidomide or carfilzomib or some others, you can get some lowering of blood count.
So, those blood counts need to be regularly monitored. Another side effect might be peripheral neuropathy. Now, that’s more common in drugs such as bortezomib or thalidomide.
And so, it’s important to look for that symptom and report if you have any numbness or tingling in your fingers or feet, or dizziness, or anything odd to your healthcare team. Because by adjusting the medication doses, then those patients can actually stay in treatment longer with better control.
Other things with the monoclonal antibodies, some of the newer drugs that are currently available will produce an increased chance of infusion reactions. Now, that’s only at the very beginning of the infusion. So, once patients have received that therapy, they can feel comfortable to keep taking that with lesser chance of side effects.
And then, finally, many drugs with myeloma have an increased risk of blood clots. So, patients should stay active, keep well-hydrated, and know that they’re at an increased risk. Most providers will recommend a baby aspirin for all patients taking these drugs like lenalidomide, thalidomide, pomalidomide, and carfilzomib. And that’ll lessen their chance of blood clots.
The last thing I’d like to add in is an increased risk of infections. Myeloma is a cancer of the bone marrow plasma cells that are responsible to protect you from getting sick, and unfortunately, they don’t work. Many therapies will further weaken the immune system. So, getting a seasonal influenza vaccine, a pneumonia vaccine every five years, and making sure they take shingles prevention is a very effective way of keeping yourself healthy.
Nurse practitioner, Beth Faiman, discusses laboratory tests for multiple myeloma, including which results should be monitored closely and how different labs may vary.
Beth Faiman is a nurse practitioner in the department of hematologic oncology at Cleveland Clinic. More about this expert here.
Laboratory results can be quite anxiety-provoking for some patients and others are pretty easygoing about it. One of the most important things I share with patients whether they come to see me every month, every three months, or sometimes we share care with referral providers is always take ownership of your own care.
You are your best advocate and it’s important to find out what kind of myeloma you have and what they myeloma specialist thinks is important in monitoring your labs. So, for example, there are kappa and lambda light chains, and everybody has a different form of myeloma. Find out the best way that they can monitor their myeloma. Also, key lab results like blood creatinine level, reflect kidney function, hemoglobin carries oxygen and that’s your anemia number. So, finding out those important key lab values and keeping track of them over time can help feel — patients feel empowered often times in their care.
But with that, I always have the caveat, take the results with a grain of salt because there are lab variations within one’s own institution or when you’re going outside of institutions if we partner with care. So, that can be about 20/25 percent lab error each month depending on the test result.
Lab values can fluctuate quite rapidly. So, if I draw a serum creatinine level in the morning, and it might be high indicating kidneys might not be functioning normally, I can encourage them to have some hydration or — and then recheck that lab value and it might go down. The same with the serum-free light chains and M-Spikes.
The lab variation within a single day can be very, very, very diverse. So, it’s important to say, hey gosh, it’s abnormal one day or one hour of the day, but then the next time it can be normal. Or normal for you a well, because there are normal values for one patient that’s abnormal for the other, and vice-versa.
Beth Faiman, a nurse practitioner specializing in multiple myeloma at the Cleveland Clinic, shares tips for making treatment decisions and discusses the evolution of myeloma therapy in recent years.
There are so many treatment options, and that’s one of the reasons why it’s so important for patients to at least seek an opinion once or twice with a myeloma specialist because treatment changes so rapidly. We have over 20 medications that are approved for the management of myeloma and so the patients need to figure out what’s important for them.
Oftentimes you think, father knows best or doctor knows best. And I hear from time to time that you’re the doctor, you should know what is best for me. But I say, “I understand what might be the best treatment for you in terms of response rate, but we have to balance quality and quantity of life. What are the things that you’re willing and your family’s willing to accept for treatment?”
Do you want to undergo a stem cell transplant which maybe takes you out of commission for a couple of months? Or take an oral therapy every day or an IV therapy intermittently? So, there are oftentimes more than one decision, and this is what we like to practice at my institution. It’s called shared decision making where you have a partnership between the patient and their caregiver, and the healthcare team and we work together to mutually decide what’s best for that patient.
So, sometimes just really trying to get that cure or eliminate the myeloma cell clone as best as possible might not be the right answer now, especially if you’re a single mom or a single dad or caring for a loved one. But maybe that might be a future goal. So, having that conversation is so important. And patients should feel empowered to be able to have that conversation with their healthcare team because if they don’t, then maybe they need to see a different doctor or specialist so they can feel comfortable with them.
I am so excited about all the new classes of drugs that are so — that are currently available. When I started managing myeloma in 1994 or 1995 there was only stem cell transplant and maybe melphalan or Cytoxan, and those drugs were not very effective in controlling the disease. I’m now able to mix and match treatments and give patients different opportunities to meet these milestones. You know, patients were so worried about not being here in two or three years, and now it’s 20 years later. So, forming those relationships and keeping them living healthy longer is so important.
We now have drugs available that can have the possibility of achieving what’s called minimal residual disease or MRD, where we’re eliminating in the bone marrow, the myeloma clone
That was unheard of five years ago even. So now we have the BiTE therapies and CAR T-Cell therapies, and some of the newer drug classes that will hopefully have a functional cure.
People ask me what a cure in myeloma is, and hopefully, we’ll have a real cure. But, living out your normal life span compared to people that don’t have myeloma, and really enjoying life as you do it. So, I always tell patients don’t forget about health maintenance and checking cholesterols, looking for secondary cancers, keep a primary care provider on hand because as a team, we can all work together, to have you live your best life as possible.
Beth Faiman, a nurse practitioner specializing in multiple myeloma, provides insight into her relationships with patients and the importance of seeking a second opinion with a specialist, even for just a single consultation.
So, my role in treating patients with multiple myeloma is very variable. So, I am a member of a treatment team. I have doctors that I work with, as well as nurses, other nurse practitioners, and social workers.
Sometimes I’m the first face that patients will see when they come to the cancer center. And hopefully, I’ll be fortunate to follow them along with their treatment trajectory.
Some of the other things that I do for patients who have multiple myeloma — I’m involved in the diagnosis and management of their care. I am responsible for obtaining and reviewing their laboratory results at each visit, and if they have a certain symptom that needs to be controlled, I am oftentimes the one that they call or reach out to for some answers.
I think it’s very important for patients to meet with a myeloma specialist at least once. I understand there are a lot of barriers from transportation to finances to just not feeling comfortable with going to an outside institution. But working at a major center which focuses on multiple myeloma for the last 20-plus years, I can really see the value in even just getting an opinion.
So, one of the things I try to encourage is for patients to come and meet with us once or twice because not only are we educating the community physician, but we’re also partnering in their care. So, if they’re getting an injection once or twice weekly, we can see them every couple months, review their laboratory values, and they can get care closer to home. And so, there’s that partnership that forms and then you’re not only educating the patient, but you’re oftentimes educating the community physician or provider that might only see one or two myeloma patients in a year.
So, when patients come to me all they know is that they’re in a cancer center. Oftentimes they have to go on whatever information they’ve been told. I see consultations independently at the Cleveland Clinic so sometimes they’ve been told by their outside physician or nurse practitioner that they might have a blood cancer. Sometimes they fall into a category of patients that have what’s called MGUS or monoclonal gammopathy, so these individuals might not even need treatment forever.
Others might have what’s called smoldering myeloma, which is a different second level, and those patients might need treatment within two to five years. But for those that have been told they have multiple myeloma, there’s a myriad of emotions, and oftentimes I like to take time, share with them first what I know about their case, get time to know them on a one-on-one basis. What they like, what they don’t like, what they do for a living, their hobbies. Because you’re building a relationship.
You might be with that patient for many, many years. So, taking the time to let them know what I know about their case, finding out about themselves, and then pooling it all together with what we need to do now, with this information is oftentimes a good way to start a relationship with the patient and their caregiver.
Multiple myeloma research is fast-moving and showing promise. Dr. Peter Forsberg, a myeloma specialist, provides an overview of the changing treatment landscape and shares resources for keeping up with the latest news.
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.
Dr. Peter Forsberg:
I think research in multiple myeloma remains a really active area. It’s been a major evolution over the past 20 years. Myeloma’s been one of the real success stories of modern oncology in terms of how much research has translated into improved options for patients.
But, many new things continue to evolve. It can be challenging to feel like you’re abreast of what’s going on. I think there are great resources for patients. Organizations like the International Myeloma Foundation, the Multiple Myeloma Research Foundation, or Leukemia and Lymphoma Society are good places for patients to start.
I also think that social media can be useful although those types of things can be a bit of a double-edged sword. I certainly find lots of things out via Twitter, and I think there’s a pretty active myeloma community in some of those areas, but you have to be a little bit careful about where you point your attention when you’re interacting with the internet. I think there can be lots of places where you might get less up to date or less thorough information and that can sometimes be concerning or challenging for patients So, I do think it is great that we have tools, but it is important to be thoughtful about how you approach them and trying to find good, reliable resources in that regard.
I think there’s a lot of really exciting things on the horizon. That’s gonna include using tools that we have in better ways. I think we’re gonna be expanding our approaches to how we treat newly diagnosed patients. It looks like we’ll be starting to use four-drug regimens in patients with newly-diagnosed myeloma in the near future, hopefully with ever-improving results. We’re gonna be more cutting edge in terms of how we test and measure disease, using things like minimal-residual disease testing in different and expanded ways.
And then there’s a number of immunotherapeutic treatments especially that are looking very promising in relapsed myeloma.
That includes CAR T-Cell therapies, bispecific monoclonal antibodies, and antibody drug conjugates, all of them look like really promising approaches and really new things that hopefully in the not-distant future are gonna expand our toolbox for how we’re able to help maintain and improve life for patients with multiple myeloma.
The concept of remission in multiple myeloma can be complex. Myeloma specialist, Dr. Peter Forsberg explains.
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.
Dr. Peter Forsberg:
I also think that one thing that can be a little challenging in multiple myeloma is the concept of remission. I think in multiple myeloma what we think of as remission may be a little bit different than in other diseases, and I know that can be confusing for patients. Remission may just mean an interval of myeloma control. It may still be a time where you’re on active therapy or where the active therapy that you’re receiving hasn’t changed too substantially, but where the myeloma is under control whether it’s still detectable or not. So, that name can be a little bit different than what we think of as remission in other types of cancer and that can be a little confusing.