Testing is an ever-present part of the journey for Multiple Myeloma, helping identify stage, treatment options, progress, and potential recurrence. Testing can also introduce a whole new vocabulary into your life. Don’t let jargon overwhelm you or undermine your grasp of test options and results.
In this podcast, myeloma expert Dr. Amrita Krishnan explains the essential testing that should follow a diagnosis, how the results could impact myeloma therapy, and discusses new and emerging treatments.
Nurse practitioner Charise Gleason explains how targeted therapies work to fight myeloma and how they may be used in combination. Charise also discusses how targeted therapies differ from radiation chemotherapy.
Charise Gleason is a nurse practitioner specializing in myeloma and serves as the Advanced Practice Provider Chief at Winship Cancer Institute of Emory University. Learn more about Charise, here.
Plasma cells or myeloma cells have a target on the outside. And so, CD38 is a very common one. You think of daratumumab, for instance, that targets CD38, because it’s on the surface of every plasma cell.
You have what’s called CS1 on the surface of plasma cells that elotuzumab targets.
And these drugs target that particular marker to break down that myeloma cell in a different way. The reason we use combination therapies are not just because we think this is a great idea to put them together. We know dexamethasone, for instance, is going to make that plasma cell more presentable and make that target more presentable to let, for instance, daratumumab work on it. And then you take something like an immunomodulatory agent that works in another way. But as far as targets, that’s on the surface of the cell is what we’re looking for on that particular one.
With the translocation, that’s one that’s very specific. If you take a translocation (11;14), those patients can express high BCMA, another target on a plasma cell.
And so, that’s the reason again why that works for some of those patients, because it attaches and kills the myeloma starting from that outside and working into the cell.
The traditional chemotherapy approaches just worked at killing everything, including normal cells, right? And so, you have a patient who gets admitted for chemotherapy, for instance, it knocks everything down and with that, the myeloma. And then those cells come back up. And so, you think of that more from a traditional admit to the hospital. We give several days of chemotherapy or the conditioning regimen for transplant with melphalan It wipes out everything.
And so, sometimes we still need to do that and do that maneuver to reset the bar. But there’s more risk to the patient with that, we’re making a patient more immunocompromised. With targeted therapy, it’s more specific to that target. So, it’s really working more to kill those abnormal cells in there. So, the patient doesn’t experience quite that same immunosuppressive state where everything is knocked down.
https://powerfulpatients.org/pen/wp-content/uploads/How-Targeted-Therapy-Works-to-Treat-Myeloma-1.png600600Kara Rayburnhttps://www.powerfulpatients.org/pen/wp-content/uploads/New-Logo-300x126.pngKara Rayburn2020-10-01 19:05:112020-10-01 19:05:11How Targeted Therapy Works to Treat Myeloma
So, testing for chromosome abnormalities or changes are important when it comes to targeted therapy.
And we used to think of this more in that relapse setting. But we also look at it upfront now, because it tells us more about the path of myeloma. And there are reasons to check throughout at relapse, again, to see if something’s changed. So, with targeted therapy, we can use the translocation (11;14), for instance.
Many patients have a translocation t(11;14). It’s not a high-risk feature. But we know on clinical trial we have a drug that we’re using called venetoclax that those patients can be very sensitive to.
And so, we’re looking at this not just in translocations but in sequencing for other abnormalities or gene mutations that can help guide us with these newer therapies. And you see that across all cancer types at this point. So, you can get very specific with a patient’s type of myeloma – that this drug is going to work better because you have this mutation.
So, we look at it upfront. It guides us for risk stratification: standard risk versus high risk. And then we look at it in that relapse setting. Do we have a drug or a clinical trial that this patient will respond better to because of those abnormalities?
When we’re risk stratifying, we know standard risk, medium risk, and high risk. Those are those translocations, those gene mutations, that we know about.
But newer testing, like sequencing, gives us a lot more mutations that we don’t even know what to do with them all yet.
We don’t necessarily have drugs for all of them, but it does help guide us down the road. So, right now some common are the translocations, but also deletion 17p, which we’ve known about for a while. But maybe you see a BRAF mutation, which you typically associate with other types of cancers, but we see that in myeloma as well.
So, it helps us look at is there a drug that our myeloma patient might benefit from because they have a BRAF mutation, for instance.
The essential testing that a myeloma patient should undergo following a diagnosis is – obviously, you’ve had those diagnostic test labs, the 24-hour urine, some scans, but the specific things that we need are a bone marrow biopsy.
That includes cytogenetics and FISH, and we can talk a little bit more about that. You also want full-body imaging. We used to always use a skeletal survey, which was an X-ray of the long bones. But, really, the standard of care now is a whole-body scan.
So, depending on what your oncologist or your institution has, that would be a full-body CT scan, a PET-CT scan, or a full-body MRI. So, one of those tests is recommended. It’s not unusual if you have a PET. Like our institution, we use PET-CT. So, for a newly diagnosed patient, we’re also going to get an MRI of the spine for a further snapshot.
What we’re looking for with a full-body imaging is we want to make sure that there aren’t any lytic lesions.
So, with an X-ray, you have to have about 30 percent bone loss before it’s going to show up on an X-ray. So, those traditional X-rays that we used to use could actually miss an active lesion. So, in that diagnosis, we want to know that there is no active myeloma. And those other scans are going to be more specific to that.
So, the cytogenetics of a bone marrow biopsy are going to tell us more about the biology of the disease. So, cytogenetics actually grows out the pairs of cells. And so, that’s why that portion of the test can take a while to get back.
At our institution, it can take two to three weeks, because you’re actually growing out those cells to look at the chromosomes. And remember these are chromosomes, or genes, of the plasma cells. And so, we’re looking for those abnormalities that might be present. So, you think about it more for the biology of the disease.
When we’re looking at FISH, we’re also looking… That test shows a little bit different. It comes back quicker. It shows two different phases of cell changes.
And so, it will tell us about chromosomes as well. But do you have any additional chromosomes – so, that would make it a hyperdiploid narrow. It tells us if there’s a loss of a chromosome – so, you’re missing one, a hypodiploid. It also tells us about translocations – so, when you’ve had a piece of a chromosome change and go to another cell. And so, that, for instance, would be like that translocation t(11;14) or translocation t(4;14). So, it’s essential to have that testing to tell us about that, because it helps guide treatment. And as we talk more about targeted therapy, these things really can come into play.
https://powerfulpatients.org/pen/wp-content/uploads/Essential-Tests-Imaging-After-a-Myeloma-Diagnosis-1.png600600Kara Rayburnhttps://www.powerfulpatients.org/pen/wp-content/uploads/New-Logo-300x126.pngKara Rayburn2020-10-01 18:56:192020-10-13 12:53:59Essential Imaging and Chromosome Tests after a Myeloma Diagnosis
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.
https://powerfulpatients.org/pen/wp-content/uploads/Lab-Tests-in-Myeloma_-Key-Results-to-Monitor-1.png600600Kara Rayburnhttps://www.powerfulpatients.org/pen/wp-content/uploads/New-Logo-300x126.pngKara Rayburn2019-10-15 18:08:162019-11-20 08:40:52Lab Tests in Myeloma: Key Results to Monitor
Thanks for joining us for this Patient Empowerment Network Myeloma Patient Café. I’m Jack Aiello. I’ve been living with myeloma since 1995, and the world has changed a lot since then, including the introduction of genetic testing. That’s gonna be our topic of discussion today. I personally have never had genetic testing because it wasn’t done back then, so I’m looking forward to learning from you all, our patient panel, who have been diagnosed more recently than I have.
We’ll talk exactly what genetic testing is about, why you might get genetic testing done, and more, but we won’t really go into the science of it. Instead, this is gonna be a conversation among patients and caregivers and serve off as a jumping point to pique your interest in genetic testing, and have a discussion with your doctor about it if you desire.
Before we dive in, I wanna meet our panel, and I’m gonna ask each of you to introduce yourself. Tell me when you were diagnosed and the treatments you’ve gone through, and I will start with Doug.
I’m Doug Kenaley. I was diagnosed in 2015, and my initial induction treatment is a little different than most. It was really only – it turned out to be Velcade and dex, and it got me down to the level where I could have a stem cell transplant, so then, I had an auto stem cell transplant. And then, about five months after that, I joined the elotuzumab maintenance trial, so I’ve been on elotuzumab and Revlimid since that point.
Okay. Peggy, tell us about yourself.
My name is Peggy Lindley, and I was diagnosed with this lovely disease on Valentine’s Day of 2019, and it was just from my regular doctor. I go every year for my bloodwork, and he found something with me, and he found it only – he was aware of it because his mother was diagnosed a couple of years before that, so he’s the one that got me there because I would have never thought that. He asked me, “Do you have any bone pain or anything?” I said, “Well, just my back,” and that was it.
Anyways, he told me what I had. Then, I had a bone marrow biopsy, and that showed it. So, I went through five rounds of the Revlimid, dex, and Velcade, and then, in July of last year, I had my stem cell transplant, and I got my stem cells back on July 12th, and then, in November of last year, I started with the maintenance therapy, which is elotuzumab with Revlimid, so I do that every 28 days now. It was a little bit sooner, and you start one week – it was a progression, so now, I go once every 28 days.
Got it. Nancy, tell us about yourself.
My name is Nancy Raimondi, and I was initially diagnosed in 2006 with smoldering multiple myeloma, and I was followed over the next nine years – I just continued to smolder until 2015. I developed a plasma cytoma, and that got biopsied, and it was 60 percent myeloma cells, so I needed treatment, so I started treatment July of 2015, I was diagnosed as high risk, so I was put in a clinical trial that included carfilzomib.
I had five rounds of chemo, did tandem stem cell transplants, and finished everything about seven and a half months later. Went in maintenance therapy the first year, was when Ninlaro was just released, so I was on Ninlaro, Revlimid, and dex for a year, and then, that got changed to daratumumab, Revlimid, and dex, and I was on that for another year. And then, in December 2017, I was MRD-negative, and I’ve not been on any treatment for myeloma since then.
We’ll talk more about MRD-negative because that’s important to this discussion. George, how about yourself?
My name is George Burrell. I was diagnosed in April of 2011. Ironically, the day that I was diagnosed was Easter Sunday and my wife and I’s anniversary. The – doctor told us we had multiple myeloma, and that we needed to get the numbers down so that he could put me in a stem cell transplant. I’ve had two of those, and I’m currently on a three-stage regimen of Cytoxan, dexamethasone, and Kyprolis, and it seems to be working quite well. My numbers are down, and have been holding pretty steady for about four or five months now, so we’re really happy.
I thought it was interesting, Peggy, how George introduced the fact that “we” were diagnosed with myeloma, so maybe you can talk about what that experience was like for you.
Well, definitely, it is a journey of “we,” and it was very frightening. I’d only heard the word “multiple myeloma” one time, with a colleague from work whose father was much older, who’d had multiple myeloma. And, George’s symptom was low iron anemia, and he’d been sent to an oncologist for iron infusions, but he never presented any other symptoms.
The doctor would say, “How are you?”, and he would say, “I’m fine,” and a year later, he was rushed to the emergency room with bleeding ulcers, and that’s when the oncologist just happened to be in the ER, and they thought George was having a heart attack, his blood count was so low, so they did a CT scan, and his oncologist came in and said, “This is multiple myeloma, I’m pretty sure.”
So, it was devastating, very frightening, but once we had a game plan – and, the one thing that George told me – he says, “Stop treating me like I’m dead,” and I was running over curbs taking him to appointments, and I was just a wreck. He was like, “You’re gonna kill me.” But, it is quite a journey, and I’m happy that I’ve been able to be there with him.
Good. Since this Patient Café is to focus on genetic testing, let’s first get agreement what genetic testing is, which is basically looking at potential mutations in your myeloma cells. So, with that in mind, other than me, who’s never had genetic testing, has every patient here had genetic testing?
Probably, right? Because you begin maybe with a FISH and cytogenetics testing. Doug, when you had that, did that yield anything interesting for you?
Mine was a bit interesting because I went to a local oncologist, even though I was here in Houston, who’s close to me, and he had done a stint at MD Anderson. And so, he presented it to me when I was diagnosed – “You should have genetic testing right away.” So, I looked into it and thought it was a good idea, even though four years ago, even, there wasn’t a whole lot more – you have a test, but then what? That kind of thing.
This emphasizes why a lot of times, you wanna go to a specialty place like MD Anderson, because they did the bone marrow biopsy, and the tech put it in the wrong solution, and it destroyed the sample. But they were gonna hold off my induction. So, the doctor was pretty mad, but my first attempt was a failure. But then, he said, “Well, ultimately, you’ll probably go for a stem cell transplant. We’re gonna hook you up with MD Anderson right away, even during your induction.”
And, the first thing they do here is genetic testing. So, at that point, I got a genetic test – successful genetic test – and it was interesting because the results came in, I got the labs, and I’ve done science – I’m a scientist, I’m a geologist – but it’s just a lot of alphabets, and it’s very complicated. They’re worse in the summaries. It said, “No deletions found, no translocations found,” things like that, but you really couldn’t understand the rest of what was in there, and you kind of suspect there was something hidden in there.
But I sat down with the doctor here, and he went over it. It said basically, I was a standard-risk patient, and my FISH and cytogenetics showed that I had tetrasomies – so, four versions of the genes instead of the normal two. And, he says, “So, if you wanna look at it, that’s kind of a good news thing because we have drugs that target certain things, you have lots of those things to target – multiple copies of those things,” so that kind of relaxed me a little bit. I think it actually impacted my standard of care a little bit, and certainly, my quality of life, because I think the doctors relaxed a little bit too. They wanna get ahead of it if you’re high-risk.
So, Peggy, when Doug mentions he got a report from FISH and cytogenetics, which is essentially gobbledygook –
What did you do when you got that?
They told me right off the bat that I had myeloma, and that I had an aggressive form. So, I went through the rounds, and I responded very well to induction therapy.
And, by “aggressive form” – how did they find that?
They just said it was aggressive. They didn’t really – they said the FISH test – it was still Greek to me. So, now, two years later, I’m understanding it more and more, but what it was was the translocation of the 4-14. So, I find that, and I ask doctors about that, and they say, “Yes, it is aggressive, it’s on the aggressive form, but it’s still on the intermediate side.” So, I’m not as concerned, but at least the doctors know, and they’re aware.
And, “4-14” means that chromosome 4 and chromosome 14 pieces have been swapped places?
I don’t really understand that yet, but I’m learning. That’s good, very good. See? I’ve learned something more.
There you go. And, Nancy, you’ve been at this for a little while, so you probably understand a little bit more about genetic testing. What’s the impact been on you?
Well, I’m getting there, but it is – it’s a lot of alphabet soup. It’s hard to retain. But, yeah, I had genetic testing done right away once the myeloma became active, and I also had aggressive highrisk. I had abnormal female karyotype, monosomy 13, the P-53, and a translocation – but I forget which one. And, what was interesting is in my initial appointment with my oncologist, he thought I was low-risk and talked about treatment, but when all the final results came back, turned out I was high-risk, which meant completely different treatment. So, that was a shocker.
So, expand on that a bit. How did that high risk change your treatment?
He recommended a clinical trial instead of what they were gonna put me in, which included being treated with carfilzomib, which, at the time – this was 2015 – carfilzomib was being used mostly for people who had relapsed, and they were doing a clinical trial to see about treating patients up front with it that are high-risk. Why wait until they relapse? So, I had that in addition to the PACE cocktail with thalidomide, something else – there were seven different chemos.
So, that was important that that high risk for you helped determine a change for the treatment, but you got into that clinical trial, and that was an effective trial, by the way, so that’s good.
Yes. It was definitely effective for me.
Good. And, George, when you did – or, you did genetic testing, I presume, and did it show anything?
Yes. The first time we did it was to run tests to get ready for the first stem cell transplant, and at that time, I didn’t understand the importance of all that. The oncologist that I was working with at the time did explain as much as he could, and in layman’s terms as best he could, but it still mostly went over my head. I was more thinking about the actual transplant itself than anything else. But, when I came to MD Anderson and got ready for – I was getting ready to try one of their clinical trials, they ran some more tests then, just to see how things had progressed through that number of years, and so, I’ve actually had partially two of them.
So, I was gonna ask – have any of you had subsequent genetic testing where results have changed after your treatment for myeloma? You’re nodding your head, Nancy.
Yeah. Over a year ago now, I had my genetics repeated, and all the abnormal stuff went away, so that was pretty exciting, because I was now MRD-negative, so that was very reassuring. And, I actually just had another bone marrow about 10 days ago now, so I’m still waiting for those results to see what’s happened.
And, are they gonna test that bone marrow for genetics as well?
Because you might find there are changes. You might find there’s a translocation where there wasn’t one before, you might find there’s a deletion where there wasn’t one before, because this myeloma is a fairly tricky disease, and we talk about the myeloma clone as made up of a percentage of different mutations, some of which get cured by treatment, and others of which expand because they were not affected by the treatment. It’s pretty interesting, in a lousy sort of way. Anything else, Doug, that you thought was interesting that came out of your genetic testing?
It looked pretty standard and fairly boring to people who liked exciting genetic testing. I did have two, so I had one – so, my original doctor says, “We like to get patients early to get an original profile.” That’s kind of like your baseline. And, I also had one right before my stem cell transplant because they like to check to see if anything happened, but the doctor says the chemo messes with myeloma – obviously, that’s why you have chemo – and he says, “You’ll probably see some differences, but that’s why we like an original one, too.”
So, I compared the two, and really, there were no extra risks – high risks or anything – that appeared. The only thing that popped up was instead of tetrasomies, I had trisomies also, but that was pretty much it. So, it didn’t really change anything in terms of treatment in terms of work that was being planned.
And, tetra- and trisomies are basically quadruple and triple duplications of your chromosome. So, I’m wondering, both Peg and George, have you had a second MRD testing, and why did you end up doing that?
I don’t know that we’ve had a second one. Have we?
Oh, you had MRD testing?
Yes, I’m pretty sure we had. He was in a clinical trial in 2018 at MD Anderson, and I’m sure they did it then. They also did some very unusual – not normal, but they were genetic tests that they ran as part of the – at the beginning of this study so they could get a baseline, or find out what other things might be going on.
And, he did this MRD trial testing to determine if he had a significant number of cells with this BCMA antigen in order to qualify for this CAR-T trial?
In the beginning, yes. That was in 2012. And then, he had his – he was in a second trial that was called Amgen 224. That’s all we know. It’s a mystery. And, it worked for him for about a year. It brought his cancer numbers back down, and there was a lot of genetic testing for that particular trial.
So, I think just about any of these new trials that are coming onboard these days incorporate MRD testing. As we all heard earlier and we know, MRD is a really good prognosticating factor in terms of if a patient becomes MRD-negative, they show that they have better progression-free survival and overall survival. It’s not really used to change or determine treatment, but those trials are going on as well, so I think that’s really important.
And, there’s so many other avenues – again, back to this genetic testing, I always wonder, well, suppose I’m MRD-negative, but I’m high-risk, versus I’m MRD-positive but I’m standard-risk. Which is better? I don’t know. I don’t think the community knows, and I think it may be individualized as well. What do you all think about that? Any feelings?
For me, I think that’s probably what is gonna be revealed to us as we move forward with this because the genetic testing idea is fairly new, at least to the patient. I’m sure that the doctors could pull each and every one of our files and show us all sorts of information that they just haven’t shared with us because of – it can be kind of complicated and hard to understand. Sometimes, I think that they try not to give us too much information because then, we have a tendency to think we can get on the computer and try to diagnose ourselves or find something.
Little Rock, Arkansas was kind of the pioneer in what’s called gene expression profiling. And, we all have 25,000 genes, let’s say, and Arkansas kind of developed a test which showed that there were about 70 genes that were very distinctive in resulting in high-risk myeloma, except they were distinctive across, say, 50 percent of patients, but not the other 50 percent of patients. And then, they tried to get it down to even 15 or 25 genes, let’s say, and therefore, it was less accurate.
So, I think you’re right, George. I think there’s still a lot of work that’s gonna be done in this area to make it something that really can be useful in terms of having the best treatment for patients. There’s an interesting trial going on right now that’s looking at treating myeloma patients according to a mutation. If we have a certain mutation and we have a drug to treat that mutation – it could be for a different cancer – then that patient will be given a baseline of treatment plus that drug to try to increase the amount of precision therapy that’s given for given patients.
So, this whole area of genetic testing, as I see it, is really fascinating, complex, difficult to understand at the patient level, but can mean a lot for us as we go forward. What do you think? Peggy, I think you’re the most newly diagnosed patient here. What does all this mean for you?
I think his analogy of the alphabet soup is exactly right because when I looked at mine, I was like, “Those are words? Yeah, no.” But, I tried not to worry about it because I figured I was going to the best when I came to MD Anderson, so I really didn’t worry about it too much because I figured it’s gonna be what it’s gonna be, and I wanna – the quality of life is what I’m looking for.
Well, I think you’re really correct there. The fact that you’re going to MD Anderson, the fact that we are getting second opinions from myeloma specialists who have a much better shot at understanding this stuff than we do is really key to long-term treatment success for us. There are a lot of drugs out there. In fact, I’ll often tell patients when I was diagnosed in ’95, there weren’t many treatment options. Today, the good news is there are lots of treatment options, but the bad news is there are lots of treatment options. You really don’t know what’s best for you, and that’s why it’s so important to have a myeloma specialist on your side.
Well, with that, the idea of being able to target certain things within myeloma is gonna be a big step forward, I think, because it’ll help eliminate some of the things – the trials that we might try, or have to make a decision – “Do we try this or not?” We’ll be able to say, “This didn’t work, so this will – let’s try this.”
Yeah. There’s a drug called venetoclax, which has been shown to be effective in myeloma patients with a certain mutation – 11-14 – and it’s in trials now to hopefully, one day, get approved for that class of patients.
One of the things I’d probably add to the discussion is there’s a lot of talk about patient advocacy, and if you follow any of the myeloma discussions, it is almost all genetics now. That’s kind of where cancer research has gone, even in other cancers. But, one of the things that I see genetic testing is doing is my ability to help the doctor help me.
So, if it was more difficult to get genetic testing – maybe not local to a major facility or something – I would still encourage it because that’s helping the doctor see your specific disease, and maybe helping them modify what you have as a standard treatment in terms of what you need instead of the standard treatment. Plus, you have it in the bank then. You have your test, and if something is discovered a year from now, that this particular drug works with this particular genetic profile, you can go back, and look, and say, “Do I have that? Is that something I should consider?”
Good point. Nancy, how important do you think it is for patients to 1) Insist that they get some type of genetic testing, and 2) to try to understand what’s going on?
Well, I think it’s extremely important. For me, it was a major change in treatment. Without genetic testing, I doubt I would be MRD-negative right now because my treatment path went along a completely different way. So, I think it’s extremely important. What was the second part of your question?
How important it is for the patient to understand it.
I think everybody has a different level of what they can understand, and that it’s important for your oncologist to give you that information in language that you can understand, and to the level that you want. A lot of that’s gonna depend on your background, your education, what makes sense to you. I came from a medical background, so I wanted a little more knowledge, and my doctor was great in giving that to me.
Patients need to ask questions.
Yes, they definitely need to ask questions, and then, the physician needs to communicate in a way that the patient’s gonna understand because it is a lot of gobbledygook, and I often – I have a hard time understanding it with having a medical background, and I often wonder how you make sense of this without having a background. It’s difficult.
This has been a good discussion, and I think we’ll wrap it up. Peg, maybe I’ll start with you. Folks listening to this discussion – what do you think they should take away from it?
Well, definitely, talk your physician, learn as much as you can. Support group for us has been very beneficial and helpful. Our support group brings in different people in the medical profession and has explained a lot of the things and given us knowledge we wouldn’t have had otherwise. And then, working with – sometimes, insurance may not wanna pay for certain tests. I’ve found that in working with MD Anderson, their financial people – we had some tests that were gonna be – I think they said “non-concerted.” I’d not heard that before. It basically meant they were questioning the test and whether or not it was necessary. So, MD Anderson was very helpful with that.
George, can you add on to what your better half says?
For me, it’s been working closely with Dr. Patel and her team, both when I was part of the clinical trial and even now, with the three-track regimen that they have me on. Again, ask questions, try to understand as much as you can, and I, too, support the idea of working with a support group and sharing information with each other because you find out so much more of what someone else heard through their doctor and their team because we all do have different doctors.
I think it’s real important for people to go to a center of excellence, at least for a second opinion, if not for your treatment. They are the cutting-edge people that are gonna be able to treat you the best, and you can just google “center of excellence, multiple myeloma,” and you’ll get a list of all the centers all across the United States. I think it’s made a huge difference. I was treated at UAMS in Little Rock, and I wouldn’t have had it any other way. I was fortunate to be able to go there.
I think as patients, we all need to be as informed as you can, and work with your doctor, and get confidence in your doctor. If that doctor doesn’t do it for you, find another one, but be confident in your doctor that they’re gonna do what’s right for you, but you have to be educated as well.
I heartily agree. Doug?
I’d stress the same as everyone else, and also recommend definitely having genetic testing. One of the things that are kind of an intangible benefit is even your own stress level. You would think that, for instance, if you’re tested and you find out you’re not high-risk, you’re standard-risk, that’d be the end of it, but it turns out, for instance, even with me, my doctors will actually modify – have modified my treatments, even my maintenance treatments, because I’m not high-risk and I have very stable myeloma.
So, they’ll say, “Well, we’re going to de-escalate. We’re gonna take you off all these drugs. You don’t need all of them, so we don’t wanna over-treat, either.” Nobody wants to be over-treated with all the symptoms and things like that. When they initially said that, I was like, “Wait a minute, I’d rather just start adding drugs. Let’s just kill this thing.” But, that’s right, and I think the fact that I can go back to genetic testing and look at what he was saying about stability over a period of years and things like that just gives me more of a comfort level that that’s probably the right answer, and I don’t need to be taking all these drugs if they’re not gonna benefit me in the long term, or I could switch drugs if I need to.
So, I guess I’d summarize it by thanking you all. You’re all terrific examples of being your own best patient advocate. If we aren’t advocating for ourselves, who else should? It’s really up to us, and the good news is there are so many resources for good information out there.
Please remember the opinions expressed on Patient Empowerment Netowrk (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.
https://powerfulpatients.org/pen/wp-content/uploads/Myeloma-PC-1.png600600Kara Rayburnhttps://www.powerfulpatients.org/pen/wp-content/uploads/New-Logo-300x126.pngKara Rayburn2019-10-01 10:37:162019-10-01 10:37:16Myeloma Patient Cafe® – Genetic Testing from A Myeloma Patient Perspective
This resource was originally published by International Myeloma Foundation here.
Multiple myeloma tests are diverse and complex. Tests are used throughout the course of your disease — for initial diagnosis, discovering the type of myeloma you have, staging the disease, and for monitoring your response to treatment.
What Can Tests Tell Us?
Tests results are the most important tools that your doctor will use to:
Diagnose monoclonal gammopathy of undetermined significance (MGUS), smoldering multiple myeloma (SMM), and active myeloma.
Assess the risk of progression of MGUS or SMM to active myeloma.
Assess the stage of your myeloma.
Assess your genetic risk factors.
Evaluate your response to treatment.
Monitor remission periods and determine when to start treatment again.
Monitor for disease-related and treatment-related side effects.
Tests for multiple myeloma patients fall into three major categories:
Blood and urine tests
Bone marrow tests
No Single Test Tells the Whole Story
Each test can be thought of a piece of puzzle. Only when the pieces are assembled together can a patient and their doctor make their proper conclusions and decisions. Myeloma is unique in each patient; therefore, it’s important not to compare your test results with other myeloma patients.
We encourage you to discuss all your test results with the doctor who is treating you. Your doctor will be able to put all the puzzle pieces together to put your results in context. The patterns of results viewed over time are more meaningful than any single test itself.
Save Copies of Your Test and Lab Results
It is important to request, print out, and save copies of your results. Bring a summary of results with you when you to all oncology visits or when getting a second opinion.
Variables That May Affect Your Test Results
Be aware that your lab results can be affected by many variables, including:
other medications and supplements that you may be taking
the amount and type of fluids you have consumed
whether you have eaten before the test
Before undergoing tests, consult with your doctor to make sure there are no special instructions about taking certain medications, supplements, food, or drinks.
https://powerfulpatients.org/pen/wp-content/uploads/6.png600600PEN Editorial Staffhttps://www.powerfulpatients.org/pen/wp-content/uploads/New-Logo-300x126.pngPEN Editorial Staff2019-09-26 13:28:592019-09-26 13:28:59Essential Tests for Diagnosis and Monitoring
This resource was originally published by Myeloma Crowd here.
We thought it might be helpful to have a document that describes your multiple myeloma test lab results and helps identify the important markers. This document contains a diagnosis summary checklist, a treatment summary form and each lab result described and color-coded for relevance.
Multiple myeloma is a rare cancer that affects plasma cells.
Plasma cells, a type of white blood cell, are found primarily in bone marrow — the soft, inner tissue of bones.
Plasma cells are an important part of the immune system. They produce proteins called antibodies that help the body fight infection by attacking and killing germs.
When plasma cells grow out of control and begin to collect in bone marrow in different parts of the body, the result is multiple myeloma.
Multiple Myeloma Complications
Multiple myeloma can cause a number of complications, some of which may be very serious. These include:
Low blood counts As myeloma cells multiply in bone marrow, they crowd out red blood cells, white blood cells, and platelets. Low red blood cell levels (anemia) can result in fatigue and weakness. A drop in white blood cell count can decrease resistance to infection. Lack of platelets can lead to significant bruising and bleeding even from minor scrapes or cuts.
Bone and calcium issues Myeloma cells produce substances that speed the breakdown of old bone and slow the buildup of new bone. This leads to holes in bones and osteoporosis (low bone density), raising the risk of fractures. Even normal activities like coughing and walking may lead to a broken bone.
Myeloma cells not only reduce the number of infection-fighting white blood cells, they produce a single type of abnormal antibody that does not fight infection. This antibody is referred to by a number of names: monoclonal immunoglobulin, monoclonal protein, M protein, M-spike, and paraprotein.
Kidney damage The antibody produced by myeloma cells can build up in the blood and urine, leading to kidney problems. (1)
How Many People Get Multiple Myeloma?
According to the most recent statistics from the National Cancer Institute, almost 31,000 Americans will receive a multiple myeloma diagnosis in 2018.
That makes multiple myeloma relatively rare, accounting for 1.8 percent of all new cancer cases.
Around 0.8 percent of men and women in the U.S. will be diagnosed with multiple myeloma at some point during their lives.
The number of people diagnosed with multiple myeloma has climbed an average of 0.9 percent each year over the course of a decade, according to the most recent data.
But death rates from multiple myeloma have decreased 0.5 percent per year, reflecting improvements in treatment. (2)
What Causes Multiple Myeloma and What Are the Risk Factors?
Scientists still don’t know what causes multiple myeloma or how to prevent it. For most people who develop the disease there are no clear reasons why.
Researchers have made progress understanding the DNA mutations (changes) that turn healthy plasma cells cancerous. This is vital work that many hope will point the way to improved treatment.
Researchers have identified a number of factors associated with increased multiple-myeloma risk.
Age Multiple myeloma is most often diagnosed in adults over the age of 65.
Gender Men are at a slightly higher risk than women.
Race African-Americans are almost twice as likely to get multiple myeloma as white Americans.
Family history Having a close relative with multiple myeloma increases a person’s odds of developing it. Is multiple myeloma hereditary? Sometimes. But most people with multiple myeloma have no family history of the disease.
Obesity People who are overweight or obese are at higher risk.
Other plasma cell diseases Men and women with a relatively benign condition called MGUS (monoclonal gammopathy of undetermined significance) should be vigilant: Every year 1 percent of these people go on to develop multiple myeloma. Patients with a type of blood cancer called solitary plasmacytoma also have a greater chance of developing multiple myeloma. (1)
The Signs and Symptoms of Multiple Myeloma
When symptoms of multiple myeloma do occur, they may include:
Bone pain, most often in the back or ribs (although pain can occur in any bone)
Numbness, tingling, burning, or pain in the hands and feet
Whether for yourself or for a loved one, these thoughtful products will help bring a feeling of preparedness.
How Multiple Myeloma Is Detected and Diagnosed
In order to make a multiple myeloma diagnosis, a medical team has a lot to consider: the patient’s symptoms, the results of a physical exam, and the findings of a battery of tests. Doctors look for telltale substances in blood and urine (calcium and certain kinds of proteins and antibodies), analyze samples of bone marrow and bone, and search for signs of disease in imaging tests such as X-rays, CT scans, and MRIs. Whatever else doctors find, a myeloma diagnosis will always involve a tumor made up of myeloma cells or at least a high concentration (at least 10 percent) of these cells in the bone marrow.
In about a fifth of cases, doctors detect multiple myeloma during routine physical exams in patients without any outward signs of the disease. (5)
A diagnosis of asymptomatic multiple myeloma, also called smoldering multiple myeloma, does not typically lead to immediate treatment. Instead physicians often choose to take a watch-and-wait approach, performing regular blood and urine tests and offering medication or other therapies only when the cancer advances. (5)
Staging multiple myeloma is the method doctors use to assess how much cancer is in the body and where it is. Doctors stage the disease in order to come up with a treatment plan and a prognosis (a prediction of the course of the illness).
Staging may initially involve categorizing the cancer as symptomatic or asymptomatic, since patients in the first category generally don’t receive treatment and can remain stable for many years. Doctors may also categorize the cancer as stage 1, stage 2 or stage 3 using the Revised International Staging System (RISS). The RISS looks at a number of factors, such as blood levels of beta-2 microglobulin — a protein produced by myeloma cells. (6)
Multiple myeloma has long been considered an incurable disease.
Throughout the 1990s, the average life expectancy for people with multiple myeloma was three years. Advances in medicine since then have increased median survival to more than five years, while some patients are pushing that number to upward of 10 years. (7)
A small subset of patients have been known to live in remission for decades. Are they “cured”? Doctors say it might be possible, although they remain highly cautious about making more definitive claims.
Meanwhile, new treatments are coming down the pike that hold promise to anyone facing a multiple myeloma diagnosis. These treatments aim to relieve symptoms, provide prolonged remissions, and increase the multiple myeloma survival rate.
Multiple Myeloma Treatments: Drug Therapy, Stem Cell Transplants, and More
Oncologists have many weapons in the fight against multiple myeloma. Treatment options include:
Chemotherapy and drug therapy, including targeted drugs that home in on specific genes or proteins in the cancer
Stem cell transplantation (in which cancerous cells are replaced with healthy cells) combined with high-dose chemotherapy
Supportive care to relieve symptoms
Clinical trials of new drugs, drug combinations, or stem cell transplant approaches
The rapid pace of research means that more and more treatments are in the pipeline. Among the most promising new treatments under investigation are those involving a type of immunotherapy called CAR T-cell therapy. CAR T-cell treatments involve genetically engineering a patient’s own T cells (a type of white blood cell) to allow them to recognize and attack cancer cells.
For every type of approach, outcomes for people with multiple myeloma depend on a number of factors, including overall health and ability to tolerate treatment.
Quality of care also makes a difference. The Leukemia and Lymphoma Society emphasizes the importance of seeking out a doctor with experience treating multiple myeloma or one who will work in concert with a specialist. These specialists are usually called hematologist oncologists. (8)
The median five-year survival rate (the percentage of people who live at least five years after diagnosis) for multiple myeloma is a little more than 50 percent. (9) But that doesn’t tell the whole story of what a person with this rare cancer of the plasma cells may experience. Life expectancy and quality of life depend on a number of factors, including a person’s age and overall health. The type of multiple myeloma also makes a difference. People with the early kind called smoldering multiple myeloma may remain symptom-free for many years before the disease begins to take a toll. Conversely, patients who have a form of myeloma with a high-risk genetic feature may have an especially poor prognosis.
With multiple myeloma there’s no simple way to define “survivorship.” While this type of cancer is considered incurable, some patients consider themselves to be survivors if they have no signs of disease after treatment. Others call themselves survivors because they’re committed to pursuing treatment over the long term and doing whatever they can to prevent recurrence.
Managing a mix of powerful emotions — fear, hope, guilt, joy — is part of life as a multiple myeloma survivor. An in-person support group, online community, and individual counseling can help patients understand complicated feelings.
For patients who regard their illness as motivation to make positive changes in their life, survivorship can involve eating well, not smoking, limiting alcohol and managing stress. It can also entail returning for regular medical checkups and tests as well as services such as physical therapy, nutritional planning, and pain management. (10)
Additional Resources for Multiple Myeloma
If you’ve been diagnosed with multiple myeloma, there are a number of excellent resources that can help you understand and cope with your condition. Click on the link below for more information on organizations, blogs, and websites that provide a wealth of information as well as medical, emotional, and financial support for people with multiple myeloma.
Watch as Cherie Rineker, a myeloma patient, Dr. Elisabet Manasanch, an oncologist at MD Anderson Cancer Center and Tiffany Richards, an advanced practice nurse, discuss how myeloma is being measured to accurately define myeloma disease states.
Hello, and greetings from Southern California. I’m Andrew Schorr with Patient Power. Welcome to this Patient Empowerment network program. This should be very helpful over the next 90 minutes for all of you living with multiple myeloma. And some people, thank God, now have been living a long time. And we’re going to be discussing measuring my myeloma with MRD testing, what is my disease state. So, testing has come a long way, and we’re going to hear the latest.
Okay. Are you ready to go? All right. Now, let’s go to Houston, Texas. We have a lot of people to meet. And one of them is a physician who is a specialist in multiple myeloma. She is at the MD Anderson Cancer Center in Houston. And that’s Dr. Elisabet Manasanch. So, Dr. Manasanch, thank you so much for being with us. She’s going to pop herself on there. And thank you so much for being with us. And we’re going to learn a lot more about myeloma testing, as we go. Also, I want to have someone else join us from MD Anderson. She’s been on our programs before. She’s a nurse practitioner specializing in multiple myeloma. And that is Tiffany Richards. Tiffany, welcome to our program. Hi, Tiffany.
Okay. And then, of course, on every program, we always have a patient. And some of you in the myeloma community have been following Cherie Rineker from Houston, who has been living with myeloma since 2012. Not too long ago, nine months ago, had CAR T-cell therapy. But she’s been through so many treatments, and she’s in Houston as well. Cherie, welcome to our program. Cherie is going to pop herself—hi, Cherie, welcome back.
Hi, Andrew. It’s great being with you again.
Okay. So, let’s hear a little bit of Cherie’s story because, for any patient going through, you want to know how are you doing. And then, we’re going to learn from the doctor and from Tiffany more about MRD testing or testing in general. And then, we’ll take your questions, of course. So, first, Cherie, to start with, you were diagnosed back in 2012. And I think you were traveling at the time, is that right?
No. I was actually going to school to become a natural esthetician before getting very sick.
In your professional background, I know you’ve been a triathlete. You’ve been a very active woman.
And you’ve done a lot of different things. You’ve been a massage therapist but particularly active. So, it started with pain in your arm and your side, right?
Pain in my side, pain in my ribs and my sternum, in my back. I was a massage therapist, so I kept self-massaging myself
with tennis balls that I would lay on trying to find the right spot. And it just would go to different places. It would never ease up. It was just slowly getting worse and worse.
And this went on for like six months, you were going through all sorts of problems and fatigue.
Right, right. Yeah. Slowly, the fatigue was getting worse and worse, to the point that my daughter was 6, at the time, and I would still pick her up, and I couldn’t do that anymore. And I had a hard time climbing up the stairs to my apartment. I ended up having low grade fevers and a lung infection that just didn’t want to go away. And I was being tested for all kinds of things. Everything came up negative. This little word, cancer, started creeping in my mind. And that’s what it ended up being.
And you have lesions on your bones, right?
They were all over my rib cage, all over my spine and my scalp, on my pelvis, yes.
How old were you, at the time of diagnosis, Cherie?
I was 44 years old. But I really believe that I had some form of myeloma for years, because I remember at 40 feeling very fragile, in my bones. And I asked my gynecologist, if I could get a bone density test. And he asked me if I was still having regular periods. I said yes, and he said you’re fine, don’t worry about it. And I think that maybe they could have found something, at that time, already.
I have a question for Tiffany just while we’re talking about diagnosis. So, Tiffany, she was a pretty young woman. Often, we think of people older with myeloma. But really, there is an age range, isn’t there?
There is. Certainly, the median age is about 69 years of age. But we do see patients who are younger being diagnosed with myeloma.
Okay. So, Cherie, you had your diagnosis. It’s a shocker. So, since 2012, you’ve been through a whole range of treatments.
Yeah. They started out they were going to do surgery on my spine. I had plasmacytomas on T3 and T4, one at one end to the spinal canal, so they were worried I was going to be paralyzed. The surgery was too tricky, so they chose for radiation. And after that, I moved from Tempe, Arizona to Houston, Texas to be closer to MD Anderson and went through nine months of induction chemo, which we changed up I think three or four times. And the side effects got worse and worse. So, we went ahead with bone marrow stem cell, my first one, in August 2013, even though I still had 80 percent of my lung and my bone marrow. And four months later, I chose for a second stem cell transplant, which only brought my numbers down to 20 percent. And then, I’ve been on continuous chemo through December of 2017, when I told Dr. Lasky I am done with chemo. It was destroying my immune system. And I was just very sick. And that’s when I started searching for a CAR-T trial.
Oh, man. So, you’ve been through it. There are some people who have done pretty well with transplant. Some people even have had oral therapies or infused therapies. But for you, you kept running through them.
Yes. And I found out later I had translocation (11;14), which is not supposed to be very aggressive myeloma. But Dr. Lasky said mine was just very stubborn. And it just didn’t do good with medicine. I would have short responses, and then, I would relapse again. And that’s how I went through the 13 different regimens.
And so, you had testing many different times. But the news often came back not so good.
Yeah. Some months, it would go better than others. And I would have a graph, in my bathroom sink, just for positive affirmation. And seeing that go down to zero, my first one, I think based on that analogy, I was supposed to be in complete remission August of 2013, which, obviously, didn’t happen. And it was just so devastating every time to see the numbers go down for a bit and then, creep back up again. And going up, Dr. Lasky often said that sometimes happens. But after so many relapses, I knew, as soon as those numbers went in the wrong direction that meant I had become refractory, and I had relapsed.
All right. So, just for our audience, CAR T-cell therapy that some people have heard about for this blood related cancer and for some others now, too, remains experimental, in some areas. And some lymphoma is approved, but not yet in myeloma. But you entered a trial. And, so far, over nine months now, it’s worked out, right?
Yes. I got my CAR T-cells back on March 12. It’s my fourth birthday now, after my birth and two stem cell transplants. And I went through a serious cytokine release storm for about a week and then, came out and started feeling better than I had in years real quick. And about three weeks later, I had my first complete remission, negative, no Bence Jones in my urine, no kappa light chains, ratio good. And then, the first bone marrow biopsy showed complete negative. They couldn’t find any myeloma.
And you’re going to go back for another check up soon where we hope that that still goes that way. And I should just mention, some people have seen some things we’ve posted along the way, and Cherie has, too, where I was thrilled when Cherie sent me a picture. And having been really almost at death’s door, she was out gardening, right, Cherie?
Yes. I do everything now. I’m back to teaching yoga and meditation. I’m doing reflexology again. I’m going to the gym, for the last month, trying to get strength in my body and my bones and my muscles. I have weened myself off all opioids. So, my medicine cabinet that was just bursting at the seams before, now, just has three little things that Valtrex, we, I guess, have to be on indefinitely and a couple of other little things. But, yeah, I feel healthier than I did probably one or two years prior to my diagnosis. So, it’s really incredible.
This is maybe the new age of myeloma care, with a much broader range of treatments than we’ve ever had before. And for someone like Cherie where so many other treatments that have worked for some of you who are watching were not working for her. And Doctor, I’m sure, when you hear this story, that makes you feel great that medical science has advanced, in this way.
Yes. It’s great that we can use our own cells to treat diseases, including cancer. I do think that, of course, these therapies are some of the major advances that we’ve had over the last five years. In fact, when the CAR-T cells were starting, I was a fellow at the National Institutes of Health. And the first patient that got one of those infusions was a patient with, actually, leukemia. And I was on-call that night, and I was called because the patient was getting a cytogram release, so I had to send this patient to the ICU. And the patient, subsequently, did all right, but this was many years before this was going to be done in myeloma.
And then, I remember very well, when I left NIH to come here, that was in 2014, one of the days I was leaving, I kind of ran into Dr. Korkendorfer who is really the person, the scientist, that has developed this in myeloma with targeting the BCMA antigen. So, he really should have a lot of credit for this. He’s the one that really started the identification of this target that now is used in many other therapies, as well in clinical trials, not just for CAR T-cells. And he kind of was waving to me and saying, “You know, I’m going to be starting this BCMA CAR T-cell study here. So, send me some patients.” So, this was back in 2014, of course. This therapy seemed to work very well. Unfortunately, most patients still do relapse from these therapies.
And so, this just means to us that we have to keep fighting to improve these therapies. So, these are still first generation of these therapies. I think that we can improve on them. And I think there’s a lot of research going on on that. Still there are some patients, like Cherie was saying, that are years out and doing well. So, I know that is not like this or everybody. But the hope is still there that we can improve on these therapies.
Okay. So, that brings us to testing. So, Tiffany, you’ve been working in myeloma for a number of years. You’ve done a lot of programs. The testing keeps getting better, right? But patients are saying to you, “How am I doing, how am I doing?” Like Cherie had the picture on the wall of the bathroom charting herself. Tell us about how testing is changing and this whole term of minimal residual disease. What does that mean?
Yeah, it’s a good question. So, when I started working here at Anderson 14 years ago, the light chains had recently been introduced. And we were starting to incorporate them into our response assessments. But, predominantly, we were looking at SPEPs and UPEPs. But, certainly, the light chains would give us an early indicator, if a patient was starting to relapse.
And then, over time, the response criteria have improved to now that we have minimal residual disease. And how I explain it to patients, I’m sure you’ve seen the slide with the iceberg. And patients, I think, relate to that. And I explained it to them that we pushed the iceberg far down below the level of detection that, with the most testing that we have, we can’t detect the iceberg anymore.
Okay. But that detection of cancer cells has become super sensitive now, right?
So, okay, Dr. Manasanch, help us understand how are we assessing MRD? So, if you are working with a Pathology Department or whoever, what tests are they doing to determine whether a patient has been treated successfully, basically?
So, we’re very fortunate here at MD Anderson because we have a fantastic flow cytometry lab. And so, we have minimal residual disease testing by flow cytometry. And that’s just sending aspirate of bone marrow, so just the blood and the aspirate, when you get a bone marrow biopsy done, and sending it for analysis through a special machine that really can look very carefully at the markers around the surface of the myeloma cells. And by looking at these markers, we can determine whether the plasma cells are normal or abnormal. And we can determine how many, in that specimen, are plasma cells and then, how many are normal and how many are not normal.
And so, if we do find any that are not normal, then, that’s what we call minimal residual disease in a patient that has been treated. So, if you have multiple myeloma, and you have been treated for multiple myeloma, it is very common to do not just the blood studies and the 24 hour urine but also to do a bone marrow biopsy. And when you do the bone marrow biopsy, usually, that’s when you take a sample for analysis. Now, that’s what we do here at MD Anderson. Basically, we can detect one cell in hundred thousand, which is the sensitivity people are always talking about 10 to minus 4, 10 to minus 5, 10 to minus 6. So, ours here, with our flow cytometry testing, is 10 to minus 5, which is quite good. And it’s probably almost the best that you can get with flow cytometry, in the bone marrow. And so, we get the result within a few days. And so, we’re very lucky with that.
Now, there is also another technique. There’s a company called Adaptive Biotechnologies. And they have a test that is FDA approved. It’s called clonoSEQ. And they have different versions. And the most recent one, actually, is quite potent. And they can detect cells one in a million. So, I’m not sure, Cherie, if I may ask you, in the test that you had done, did you have the clonoSEQ test done, with flow cytometry?
I just emailed my oncologist, the trial oncologist, about that. And he said that I was MRD negative, with the clonoSEQ
was 10 to the negative 6.
Yeah. Because it’s very difficult to get the 10 to minus 6. So, the level of sensitivity is, basically, how many cells can you detect, in a sample of millions of cells, how many can you detect that are abnormal with myeloma. And so, with flow cytometry, it’s very difficult to get to one in a million. So, that’s why I suspected that’s probably done with the clonoSEQ assay. So, that test, basically, is available. The doctor has to send a sample to that company, Adaptive. And then, what I’m not very clear on is how the billing is done. Now, for here at MD Anderson because we already have an assay that is set up, it really doesn’t cost extra to patients to do. We really do it through flow cytometry. And so, that’s really what we’re doing at MD Anderson right now is flow cytometry minimal residual disease. It works pretty well. We know, from many studies, that it is predictive of how long a remission will last, in most patients.
However, each patient is so different that this is something that, whether, in your particular case, you need minimal residual disease or not is something that really has to be addressed with every patient because every patient is a little bit different. And one of major limitations of minimal residual disease is that it comes from the bone marrow. And the bone marrow is a blind biopsy, right. And so, people can have other things in other places, and we don’t see them. Now, it seems that, for most patients, it still works pretty well. But if you have a collection of plasma cells somewhere else that is not in that specific location where we do the bone marrow, that’s not going to show up. And so, that’s one of the limitations of this. And what we try to do with that is you can combine some imaging with the bone marrow test. And that even has a better prediction probably. So, you can do like a whole body MRI or a whole body PET CT. And then, you can look to see are there any lesions, anything that we’re not looking at the bone marrow. But I’m definitely having minimal residual disease negative but one to one million, which is a very good sensitivity,
after CAR T-cell therapy is excellent. It’s fantastic.
Oh, good. So, you got a second opinion here, Cherie.
And I will say I had the PET scan done as well. So, my only concern is because I relapsed so many times and so fast, how durable is this one? Will this one pop back, too? So, there’s some fear attached still.
But that’s so difficult to tell because every patient is so different. Every patient is so different. And this is where it’s very easy to take a study and say 50% of these patients did this, 50% did this. But when you have that patient in front of you, it’s so hard to predict the individual rates because you mentioned, for example, I your case, all you had was this translocation (11;14), which really doesn’t signal this that this is going to happen. But it happened. And so, it’s so hard, when patients say how long am I going to live. I don’t think that we can tell. We can say, based on average, for your case, maybe this is what could happen. But really, no one knows.
So, each case is very, very individual. It’s very different. You really have to look at all of the things carefully. So, it has to be very careful analysis of each case. And so, this is why we run into surprises. But, overall, it is true that, if you have—no matter what type of myeloma you have, if you have a complete remission with minimal residual disease negativity that seems to pretend a good prognosis, in terms of the time that you stay in remission. And so, that’s important. And that usually translates into people living longer, the more you stay in remission. That’s usually how it goes. But, again, that’s a generalization. And every patient is very different. So, it’s just hard to do case by case.
And I want to ask Tiffany, so, Tiffany, you have patients come to you for follow-up care. And tests have been ordered along the way. And you’re going over the results with them. So, if it were me, and I had this, in my condition, chronic lymphocytic leukemia, where Dr. Wierda was also there at MD Anderson said, “You know, you’re not MRD negative.” And I was kind of crestfallen. And I said, “What does that mean?” He said, “You’re going to need treatment again sometime,” kind of like what the doctor was just saying, “but we don’t know when.” And for me, it was many years, actually, for that particular condition. But tell us how you described that because I’m sure you’ve seen people disappointed or feeling pretty good. So, how do you manage that, with your patients, Tiffany?
Yeah. I usually try to set expectations, right from the beginning, when a patient first comes in because all patients want to have a CR. And they all want to have the deepest remission possible. That being said, I tell them upfront that the majority of patients may not get there. But that I have patients who have never achieved a complete remission. And they’re living 20 years later. So, I always tell patients that, at the end of the day, we have statistics. And we use those to formulate our treatment plans. But they’re their own unique case. And, if you don’t get to that MRDnegative status that it’s not the end of the world, that it doesn’t mean that all hope is lost and that this is the worst thing on earth. So, I try to set that expectation right from the beginning, so that, if they don’t get it, they’re somewhat prepared for that, and that they don’t leave feeling super, super disappointed.
I want to remind our audience, if you have a question, and some people, certainly, have sent them in, just send it in to
firstname.lastname@example.org. Now, Doctor, let me ask you this. So, here’s the thing. You’ve got all of these variables. So, it sounds like the testing is one indication. But what are the other things you’re looking at? It seems almost like a constellation for you, as a practitioner, to know how is somebody doing. Or even, if you’ve had a certain treatment, how is that treatment going. So, tell us what else you look at. So, the MRD testing to the 10 to the whatever, 5 or 6, as you can, what else? How do you assess how somebody is doing?
Well, so, the first things that we do is we have what we call our myeloma labs. And the myeloma labs include something called electrophoresis. That’s a test that looks at each patient’s individual paraproteins. Those are the proteins that the myeloma makes. So, most myelomas, about 80 percent to 85 percent make what we call—they make an immunoglobulin. And those immunoglobulins, they actually have two parts. They have a heavy chain and a light chain.
That’s how immunoglobulins are structured. And those immunoglobulins usually fight infections. But the immunoglobulin that the myeloma cells make does not fight any infection. In fact, I’m just going to go in there and say that we have some exciting research here where we’re going to be looking at whether these paraproteins target in myeloma. So, we don’t know what they target. In a healthy patient, an immunoglobulin is supposed to target an infection or something that is foreign to us. And, usually, it’s viruses, bacteria, and so on.
But in myeloma patients, we don’t know. And we’re trying to look into that to see what is going to happen with the etiology of myeloma. Now, that’s what we look at in the blood, so those immunoglobins, those paraproteins. About 10% or 15 percent of patients, they don’t have the heavy chain. So, they have only one part or two parts of the structure of immunoglobulin. Instead of having the heavy chain and the light chain, in the immunoglobulin, they just have the light chain.
So, when I say this, it may sound a little complicated, but it’s really very easy. Most myeloma patients, they have an immunoglobulin G. So, we look to see how much of the immunoglobulin G is in the blood. Some patients will have immunoglobulin A, some will have immunoglobulin M. Maybe one percent of patients will have immunoglobulin E or an immunoglobulin D as in David. Those are very rare, but we see them. So, that’s usually most patients, myeloma express some of those. So, that’s a nice way you can correlate how much tumor you have, how much myeloma you have, by how much of this protein is in the blood.
Usually, most of the time, you can correlate that pretty well. So, the higher the level is in the bone marrow, the higher it is also in the blood. And so, usually, with a simple blood test, you can already know a lot about the patient’s myeloma, if the levels are very high or not. So, the first thing we look at, again, is this electrophoresis.
And that tells us how much of those immunoglobulin are in the blood. And then, we have, also, the light chains, which are kappa and lambda. So, we look at those. Those are the second part of the immunoglobulin. And, again, about 15 percent of the patients, they don’t have the heavy chain. They don’t have the immunoglobulin G or D or M. They just have the light chain, kappa or lambda. So, patients that have the whole protein, the whole paraprotein, the whole immunoglobulin, both the heavy part and the light chain part, we look at that through electrophoresis. And that’s very useful. And that’s how we determine the response.
So, you have the patient that has an immunoglobulin G kappa myeloma, that’s what the myeloma is making. And they start with a number of four. So, even if that number goes from 4 to 2, that’s a partial response. If it goes from 2 to 0.4, that’s a very good partial response.
And if it goes to 0 that could be a complete remission. So, really, most of what you need to measure like partial response, very good partial response, is really just the paraprotein. If you have a light chain myeloma, then, you have to look at the light chains in the blood. So, you don’t look so much at this paraprotein and the electrophoresis, but you look at the light chains. So, basically, you need, for someone who has the regular myeloma like most people have that has both heavy and light chain, you just look at the electrophoresis. And that can tell you a lot already. And that’s just one test.
Then, if you want to know about complete remission, once you reach that zero, then, you have to look at something called immunofixation that tells you the type of paraprotein. You have to look at the light chains. Also, you have to look at the variations in the light chains in the blood. And you have to look also at the urine. So, usually, that’s what we do with each patient.
So, there’s a lot of tests involved in this. So, the urine, the best test to measure the urine, in myeloma, is still a 24-hour urine that measures how much of the Bence Jones protein, which is the myeloma protein in the urine, varies. And that can be done quite easily, although it’s a little bit cumbersome for patients. And you look at that. So, only once you reach your complete remission, once the numbers in the blood are negative, the numbers in the urine are negative, then, usually, that’s when we say, okay, we’re going to do a bone marrow biopsy.
And then, if the bone marrow biopsy is negative, the bone marrow is normal, then you can do your MRD testing, your minimal residual disease testing. And that’s how the levels of remission. However, it gets a little bit tricky because you can have a patient that has still some paraprotein in the blood. So, the blood markers are positive. The urine markers are positive. And then, you do your bone marrow, and you do your minimal residual disease testing, and that is still showing a little bit of the—sorry, that is, basically, negative.
So, you can have an MRD-negative test. And you can have patients having some paraprotein in their blood. Okay. The main explanation for this is because the paraproteins, the IgG kappa mainly, takes a very long time to disappear from the blood. So, you may actually be looking at the bone marrow, and you don’t see any myeloma in the bone marrow, and that’s actually a good thing. What it likely means, for most patients, is that, with time, what they’re seeing in the blood will go away. So, it does seem that the IgG kappa tends to linger in the blood.
So, if you have patients here that have IgG kappa, and they have a minimal residual disease testing in the bone marrow, and that is not normal, and they still have a little bit of their IgG kappa in the blood, then, it is likely that this will actually go away with time.
Whereas, if the MRD testing is positive, it is a little bit more difficult. So, it can give you chances. But, basically, there are a lot of tests that we use.
Wow. So, I want to say, first of all, thank you for that because ladies and gentlemen watching are living with myeloma. Now, you hear how complicated this is to really understand, maybe not for Dr. Manasanch, but for some, particularly community oncologists around the country, around the world, to really help you get a clear picture of what’s going on with you. And this whole thing about lingering of some of these paraproteins where you’ve had an MRD negative test, I’d say, oh, I have an MRD-negative test. And then, if this other one came up, I’d say, oh, my God, could you explain the linger. And it’s maybe not such a big deal, right?
It doesn’t have to be a big deal. And, usually, it still is a good thing, if you have still a little bit of protein in the blood and they myeloma.
And then, the bone marrow is normal, and the flow MRD or the clonoSEQ is negative that usually, probably, means that it’s just taking you a little bit longer to clear that protein from the blood.
Wow. So, Tiffany, the doctor rattled off a whole bunch of testing and light chain, heavy, light. If somebody is diagnosed with myeloma, and I’m sure this—Cherie, you’ve sort of gone to school learning this, over the years, but it is overwhelming to try to understand this. Obviously, you have to have a healthcare team you trust. How do you help people through this? Because they want to know how am I doing.
Right. That’s a good question. I think you’re looking at your patient in front of you. So, you’re going to tell them what they need to know, what our goal for them is. So, if they don’t have light chain—if they have a regular myeloma, you’re going to talk about their M protein and what we want to see their M protein go to.
And so, you’re not having to like go through everything all at the same time. Usually, the physician I work with will explain the iceberg discussion to the patient, at their initial visit. But, obviously, there’s a lot of information that’s given to patients, at that point in time. And so, you’re really just trying to take it—I try and take one step at a time, with patients because I find that they get very overwhelmed with information overload. And so, trying to break down that information, I think, is useful for patients, rather than giving it to them all at one time and just reiterating to them, at each visit.
Good, thanks. So, Dr. Manasanch, what do you tell patients? So, again, you’ve said, well, we’re going to do this test, or we’re looking at these proteins or light chains. How do you help people work with you to have confidence that maybe things are working?
Well, I know it seems complicated, but it’s really very easy. The way we have our results, at MD Anderson, is it comes through the paper sheet that has all of the results there very clearly. And you can really point out, okay, this is your result. This is the number. This is your starting point. So, I just say this is your starting point. This is your number. Now, we want this number to go to normal. For the M protein or paraprotein, the normal number is 0. So, we would like the number to go to 0. That’s what we would like. Now, not everybody goes there. What does it mean? Well, for some patients, even if they don’t get there, it doesn’t matter.
They still do really well. For some patients, they don’t. Do I know, when I look at the patient? I cannot know. So, then, I don’t think that it’s very important because I pay a lot of attention to the things that I know that will impact.
So, whereas it is true that, for most patients, it is better for these M protein or these paraprotein to go to 0, there are some patients, as Tiffany said, that it never goes to 0, and they’re still doing great. And they don’t need anymore treatment. Some of them, they have the same number, zero point something, for years without treatment. So, it’s very difficult to say. So, I think it’s very important. The way I explain it is that we want this number to go to 0 if possible. If it doesn’t go to 0, then, we’ll talk about what to do, at that time, and whether we need to do something for your case or not because everybody is different.
And the people that have light chain disease, which is measured through the light chain test, then, I just go and say, okay, this is the light chain. This is what you have. We want this number to go to normal. Normal is around 10 to 20, something like that. We want this number, which is the ratio, to go to around 1, 1, 2, 3, something like that. And that’s our goal. That’s what we’re going to try to accomplish.
And then, when this number—I don’t go and explain all of this and MRD in the first visit because it’s too much. It’s just a lot. And patients with myeloma, they become your friends because the come to see you really every month. You see them all of the time. So, you have so many opportunities to talk about those things in follow ups that I just say the goal is to get you better, get those numbers reduced. And then, we’ll go and see from there. And then, in subsequent visits, then, we discuss, okay, well, guess what. This number is close to 0. Or we’ve done already a few months of treatment.
How about we do a bone marrow biopsy, and we look at minimal residual disease. And then, I discuss that. So, that’s usually how I do it. We break it down a little bit. And I don’t go into so much detail. But the patients always have all of their results. I usually give all of the results to my patients, so they can process them. They can look at them. They can become familiarized with them. I think it’s very important for patients to know what they’re looking at, what results they need to be aware of. And so, I certainly point to that probably at every single visit for every patient.
Okay. Cherie, what were some of the test results that you were following closely for you to feel how you were doing?
So, for me, I never had an M spike. And so, I guess that means I didn’t have the heavy light chain. Did I get that
Yes, that is correct.
Okay. So, I never had an M spike. I believe my kappa light chain started out in the tens of thousands like 17,000, and my Bence Jones was around 8,000. And so, I was very afraid of chemo. I did my first month of lenalidomie (Revlimid), dexamethasone (Decadron) and bortezomib (Velcade). And my kappa light chain, actually, went up, after the first month. But we had a little accident at MD Anderson.
I had not put the lid good on the 24-hour urine. And my husband picked it up, and half of it ended up in his shoe, which got him very upset. But when we went to Dr. Lasky the next time, Dr. Lasky kind of gave me a high five on the Bence Jones. He said, “I don’t understand because your kappa light chain had jumped like 1,000.” He said, “But your Bence Jones went in half.” And I was very out of it. I was on a lot of medicine, at that time. And as an afterthought, I said, “Well, we did lose half the bottle of urine.” I told him the story. And I remember the look on his face went from, okay, this is a good thing to concern.
And looking back that little accident actually probably saved my life because being a holistic practitioner and being so afraid of chemo, probably had I known that both of the numbers had gone up, I probably would have said I’m not doing this anymore.
See, I’m right, and chemo is not good, and we’re going to stop it. So, the next month, the numbers slowly started coming down. They didn’t do a bone marrow biopsy for me. Well, they did one, and it was inconclusive. And then, they did another one, nine months later, before my stem cell transplant, which then showed 80 percent in the bone marrow. And I had asked Dr. Lasky what is a good way to go into the stem cell transplant. And he said, “We like patients to be between 0 and 5 percent.” So, needless to say, when I heard 80, I was pretty…
…you had quite a journey. So, we’re going to take some questions, in just a minute. Caroline has already sent one. Caroline, stand by and send them to email@example.com. So, Tiffany, some of the testing is to see what subtype of myeloma you have. Dr. Manasanch was talking about that.
Do you have this type of myeloma or that type of myeloma. So, some of the testing is related to that. So, is that sort of
step one is to see what’s your myeloma and how do we measure that? Is that where you sort of start?
Well, when you’re looking at an M protein, you do have to know what type of myeloma that they have. And a lot of patients, particularly patients who are active on blogs and support groups and stuff, always want to know what type of myeloma do I have. And so, the immunofixation will tell us what type of protein is being produced. So, whether it’s an IgA kappa or an IgG kappa, or in the case of a urine protein electrophoresis, it will tell us if it’s a kappa or a lambda. And then, we look at the M protein as well.
And I wouldn’t say there’s a Step 1 that we look at and then a step two because I think, when you’ve been doing this for so long, it’s more fluid than that. But that’s what patients want to know is what type of myeloma do I have.
Okay. And then, just to be clear about the MRD testing, which becomes more and more sensitive, is that really kind of later in the process to do the MRD test? Where does it fit in?
Yeah. So, usually, the MRD testing is not going to happen, until the patient is in a good remission. And so, generally, if the patient has achieved a complete remission, or if they have a small amount of residual protein, then, you may consider doing it. It really depends on the patient situation and where they are, in their journey.
Okay. What about do it more than once? Do you get a remission, but then, later somebody comes out of remission? And later, would you do it again?
Generally, for a patient who is not on a clinical trial, at this point in time, we may recheck it. But for the physician I work with, we, generally, won’t recheck it because, at this point in time, it’s not like we would change—so, if a patient is on maintenance, lenalidomide, for example, and they achieved an MRD negative, and now, they’re MRD positive, but everything else is still looking okay, their numbers aren’t changing, we wouldn’t necessarily change treatment, at that point.
And so, it’s really going to be patient dependent. Sometimes, you’ll get them once a year, but, again, we don’t necessarily change treatment because a patient went from an MRD negative status to an MRD positive status.
Okay. Doctor, do you have a comment about that, about how often do do MRD or when?
Right now, if you are on a clinical trial, the clinical trial, basically, tells you when you’re going to test for this. If you’re not on a clinical trial, I’ll tell you when I do it. And I think also, a lot of physicians do it at MD Anderson, which is usually before our stem cell collection.
So, newly diagnosed patients, they come in. Okay, yes, we confirm this is myeloma. This needs to be treated. They get treated. The response rate for the treatment of multiple myeloma right now, with the therapist that we use at MD Anderson, the response rate is 100 percent. So, basically, everyone, maybe 1 patient in 300 doesn’t respond. So, we can say response rate is 100 percent. So, all of them are going to respond or almost all of them. And then, we get ready. Most of the times, most patients actually, in our center, about 80% of newly diagnosed patients choose to do an upfront autologous stem cell transplant, which means that they need their cells collected.
And they proceed to get high-dose melphalan (Alkeran), which is the medication that is given with that transplant process. And so, we check the bone marrow to make sure that, actually, we’re not going to pick up a lot of bad cells with the stem cells.
We check the bone marrow because we also want to have a good response, whatever response you have, usually, before a transplant. The marrow transplant outcome, again, for most patients, but generalizations do not apply so well to individual patients and their cases. So, every patient is different. But, usually, we check the bone marrow biopsy, before we do the stem cell collection. And then, the bone marrow biopsy, after treatment, usually includes a minimal residual disease testing. So, that’s definitely something that we kind of consent to do at MD Anderson.
After that, it really is physician dependent. And it’s also patient dependent. So, all of us have a patient who wants to have a bone marrow biopsy every year and have minimal residual disease testing and seeing is it coming out of remission or not. Right now, there is no evidence coming from a clinical trial that that’s going to add any benefits.
So, for example, doing a bone marrow biopsy once a year to see the minimal residual disease, whether it’s positive or negative. We don’t have information on that. However, from our experience, I believe that we will be doing this in the future. So, patients will get minimal residual disease testing in the future. And that will determine what we do with treatment. Why? What Tiffany said. First of all, it’s common sense. It’s a little bit of common sense. But all of the studies, all of the evidence that we start having from clinical trials will be showing is that the earlier you know and the earlier you do, the patient seems to have better outcomes.
And that translates to smoldering myeloma, hopefully. So, now, I keep hearing more and more stronger voices about
maybe treatment of that. So, that’s a big area also in myeloma. Why?
Because, as Tiffany said, they use the paraproteins, the electrophoresis, the M proteins. And then, they have the light chains. And the chains are a little bit more sensitive. So, then, now, we don’t wait. So, the patient has a paraprotein, an M protein, of 0.0, and then, we don’t wait for that paraprotein to be 1, if the light chains are high. If a patient has the light chains are going up, we treat the patient, if they’re consistently going up. We don’t want for the paraprotein to be a certain number. So, I feel like a minimal residual disease would be something similar.
I feel like patients who will have the minimal residual disease, if they’re minimal residual disease is negative, they will have the testing done. And if we see that that starts to change, maybe the frequency of the MRD is increase. So, now, instead of doing your minimal residual disease testing every year, now, because it turned from negative to positive, now, we’re going to check it again in three months.
And guess what, if, in three months, that’s also higher, then, maybe you change the treatment, or maybe you start treatment. Now, that’s in the future. That’s what we are hoping to achieve, with all of this. And I think that a lot has done in the last few years. I believe that the Food and Drug Administration, the FDA, will actually approve minimal residual disease as an end point for clinical trials. So, basically, the response how drugs are going to get approved is not going to be just, if your remission is longer or if you live longer. But if you get drug A versus drug B, in a clinical trial, what is the percentage of patients that are minimal residual disease negative. This is going to happen. And so, right now, the use of MRD, I think, has either been limited to when we do our bone marrow biopsies in patients after treatment and the significance is prognostic. So, overall, for most patients, if you’re MRD negative, it’s better than if you’re MRD positive, again, for most patients. And that’s all that we can say right now, today, is prognosis. But in the very near future, I think that we will do things like changing treatment. Maybe we’ll do things like stopping treatment. I don’t know. But we have a lot of studies that are looking at this right now. And they will report, in the next few years. So, this is where all of this is going. And right now, MRD is limited, I think, it prognosis. If you want to know your prognosis. And then, if you’re MRD negative, and you have to have it tested every year, you can. There’s nothing against it. What do we do with the information, if it turns positive?
It’s a little bit ahead of the time where we have full answers. But it depends on the patient and the physician a lot.
Okay. This was a very complete answer. So, questions are pouring in. So, we’re going to start getting a lot of questions. Just so I understand, so the MRD testing today is only from the bone marrow, or can it be done from the peripheral blood, too, doctor?
That’s a great question. Right now, it’s only from the bone marrow.
Okay. But that may change.
That may change. We, actually, have a study here at MD Anderson that I hope is going to be starting by the end of the year, which is going to be looking at something called the single cell assay, looking at, basically, each myeloma cell in the blood and doing very complete analysis, anomic analysis, something called proteomic analysis, looking at how the different cells are a little bit different. I think that, in the future, we probably will be able to do a blood test. We are not close to it yet. So, I don’t think, as I tell you, MRD, FDA approval for regulatory trials, I think, it will be soon. MRD testing, for the treatment decisions, soon, sooner rather than later. Maybe a test in the blood, maybe not so soon. So, maybe a few years.
You need a crystal ball. Okay. So, Tiffany, I think we’ve been talking about when MRD testing is typically done or when could it be done. And then, so Matt says, “What about the cost?” So, how do you guide people. Where does the cost come in, Tiffany? What are the costs of MRD testing?
Yeah. So, I know that Medicare will now pay for MRD testing, but that doesn’t necessarily…
…you said they will pay for it?
Yeah, for the clonoSEQ, they will pay for MRD testing, Medicare will. Whether or not other insurers, I have not heard from any of our patients that they’ve had difficulty or that they’ve had denials or that they’ve had to pay out of pocket. So, I think, by and large, insurers are reimbursing.
Okay. Now, some of these questions, folks, I don’t have myeloma, so I’m not as well versed as some of you, but let’s do
this. Matthew asked, “If you have M protein 0.1 or 0.2, should you get MRD testing?” And otherwise, you have negative numbers. So, Doctor, he’s wondering, with a 0.1 or 0.2, the M protein, should he have MRD testing?
It depends. So, a patient that has—so, just a generalization. A patient who has very little paraprotein in the blood, assuming this I like a regular myeloma, most of the myeloma types that have both the heavy and the light chain. And then, you have 0.1 and 0.2. So, the response for these type of patients is usually what we call a very good partial response. Why? Because most myeloma patients that have this type of myeloma, the M proteins or paraproteins, they’re in the range of 3 or 4 or 5 grams, when they start. So, by the time they reach 0.1 and 0.2, that’s already more than a 90 percent decrease. And that’s what we call a valuable partial response. So, if you have a patient—if you’re a patient, and you know that your response is a very good partial response, does it make sense to test for minimal residual disease for prognosis?
It makes sense, for what I mentioned. Actually, if we look at the patients who are in very good partial response, and we look at MRD positive or negative, the patients who are negative tend to do better, in terms of how long their remission will last. So, if you have—you are in very good partial remission, and you want to know if this test if the clonoSEQ or if the flow is going to find any myeloma cells or not, if it does not find any myeloma cells, if you do not have myeloma cells that the test can find, that’s usually better than if the test finds some for patients in very good partial response.
So, what happens is do you want to test for it in partial response. Well, let’s say it’s not 0.1 or 0.2, the protein is 1.5, it can still probably predict. But, at that range, most patients be positive. So, it really starts to make sense, when you have very little in the blood, very little protein in the blood, and a very good partial response or very good partial remission range or complete remission. That’s when you can actually discern. If you test diagnosis or if you test partial remission, most patients will be positive. So, you can test, but it’s going to tell you what you already know.
It’s positive. So, then, what’s the point. So, for this patient, if it is a very good partial response, if the response is a very good partial response, it makes sense to, basically, talk to your doctor and say, okay, is this something that we need to do or not. Because it’s only prognosis, it’s really just to know. It’s not going to—it’s probably not going to change.
I think Matthew wants to know, and I’d want to know, too, because you have those very low numbers. I think, to get our head on straight, wouldn’t you agree, Cherie, you want to know?
Yeah. Just for peace of mind.
All right. Let’s get to some more questions. So, Valerie wrote in. She said, “If I’m declared MRD negative, is there still a need to take maintenance therapy indefinitely?” So, Doctor, do you want to take that one?
So, the first thing is that my first inclination to that answer is, right now, we’re November 19, 2018. So, as of November 19, 2018, today, yes, you have to continue, even if you are MRD negative because being MRD negative, all it means is that the test cannot find the cells. But we have a problem in myeloma. We have a big problem in myeloma. And in myeloma, we really cannot seem to cure it, for most patients. Which means we cannot get rid of it. It’s still there. So, our worry, when patients come out of therapy, especially if they’re doing well with their therapy, right, it doesn’t have a lot of side effects, and they want to come off of it just to come off of it or because you’re MRD negative, the problem is, okay, what’s going to happen.
So, I actually had plenty of patients to where complete remissions, MRD negative by our flow cytometry, and I’ve taken them off therapy because they’re older patients. And this is relapse because there’s really, it’s the discussion because they’re coming, and they’re not doing well.
They get admitted. They have infections. They are not doing well. So, then, okay, well, everything looks good. Let’s give a break. And the myeloma comes back. And then, you treat it again, and it goes into another remission. And then, it comes back again. So, being minimal residual disease negative, in relapsed myeloma, you still need to treat it.
Okay. There’s an elephant in the room here, though. Cherie, so with this 10 to the 6, you’re negative. The most sensitive test available. You’ve had the leading edge of treatment, CAR T, and yet, you’re hearing the doctor say we don’t think we are able to cure myeloma and that it may come back. So, you’re hearing this. What are you thinking?
Well, I belong to a CAR T Facebook group. And, sadly, there are people who have relapsed. There are people that have passed since relapse. And I have pretty severe post-traumatic stress syndrome, from everything that I’ve gone through from the many relapses. And so, I’ve noticed the further out I get, the worse my anxiety is getting actually not being on any treatment. So, hearing this, again, I feel that, at this point, maybe I want to go on maintenance. But I think it would disqualify me for the trials. And I want to be part of helping the CAR T research. At the same time, I can’t fathom the thought of having to go through another relapse.
And for me, even though the numbers are really small in the end, the plasmacytoma 9 centimeter, which popped out of nowhere, within a month, the cancer was so aggressive. So, would you recommend, doctor, that I should pursue a maintenance regimen?
But you’re in the trial though to see how long it lasts though, too.
Well, I think I’m just going to comment on this. First of all, I think Andrew’s question, so this maintenance usually applies to newly diagnosed patients, right. But I made my case with relapse because what happens, newly diagnosed patients, usually, the therapists we have now are so good. Most of the patients do really well, right. I think that this is the main thing of the webinar is patients with myeloma do really well right now. I think this has to be that, most patients do, okay? Once the myeloma has come back, and it has come back a few times, it just takes less time to come back.
So, my experience with doing minimal residual disease testing has been that. You can have somebody who has relapsed myeloma who is MRD negative. That does not mean that they’re always going to stay like that. But that also doesn’t mean it has to com back. I’m just saying that it can be either way. But for maintenance like after transplant or maintenance after your initial treatment, when you’re doing just continuous therapy, probably the right thing to do is to continue, even if you’re negative, continue that therapy because we really don’t know.
We don’t have data. There are studies now where, if you are MRD negative, they stop the therapy. And if you’re positive, they continue. Right? And, in fact, you’re negative, some patients stop, some continue. So, basically, we’re going to see, in the next few years, if you can stop it, if you’re MRD negative, if you can stop the maintenance. But right now, there’s no evidence, specifically, for your case, after CAR T. There is no evidence, right now, that starting therapy will make it last longer. So, probably , you don’t have to do anything. But for the newly diagnosed patients who go on the maintenance, they’re negative. Basically, that’s not affecting how we treat. It’s just an information. It seems like that’s a very good prognostic factor. But whether we have to stop the maintenance, that’s up in the air. And for most patients, I would probably say don’t stop it. Continue it. until we have at least some studies saying that, okay, if you’re negative, you can safely stop it. That’s what I would do. I’m just going to play a little bit devil’s advocate.
I would just say that, for me, just listening, there’s an old phrase don’t mess with success. Right now, you’re living your life. You’re going to go from—when you’re in a trial, part of the thing with the trial is to understand how long can you have this. Here’s a question we got in from Darrell. And, doctor, I think you answered this, but I just want to make sure. So, he said he did have a very successful CAR T, and all markers of disease in the bone marrow were zero. PET scan analysis, no evidence of rival disease. But the M spike, after 90 days, has remained 0.1. Is it possible, and I think he said this, that the M protein just takes a little while?
It’s possible. It’s possible that maybe there are some cells that are making that M protein somewhere. But, again, as
long as the cells don’t get worse, who cares? If you have an M protein of 0.1, and that’s not making you sick, and it’s
going to stay 0.1 for 10 years, that’s not going to kill you. An M protein of 0.1, that doesn’t get worse. So, the key here
is, if you stay there, that’s okay. The problem is, if it goes from 0.1 to 0.2 to 0.4 to 1.0, That’s when we get into trouble.
If, for some reason, there is the balance of your body or immune system is just letting some cells be there and make a
little bit of protein, and that’s it, that’s great.
That’s all you need, to not get into trouble, with the myeloma. So, that’s possible, of course. You can have everything negative and a little protein, and the light chain is a little bit high. That happens. But it could just be that it’s just lingering a little bit longer. It could be that there are some cells making it that are not doing much. It just has to be followed.
Okay. Just to be clear, Darrell asked a follow up question. After CAR T, then, why not start a maintenance treatment,
even if you’re MRD negative? So, is that what is the protocol for the CAR T? Or what are you doing at MD Anderson?
Well, that’s a very good question. I think that’s probably like the next generation of studies, with CAR T. So, right now, when we design clinical trials, you have to, basically, make an end point, right? So, what’s your goal, when you do a study? What do you want to prove? What are you trying to say about this?
And they do studies with CAR-T cells really mostly have two end points. One is safety. So, make sure that you’re going to give the cells. People are not going to die from toxicity. They’re going to actually going to be able to go through with this. And then, the second one is how effective is this, so what are the responses? How long does it take after a response for the myeloma to come back? So, those are the main things. So, if you do a CAR T, and then, you put a therapy right after, it’s very difficult to isolate the effect of the cell therapy. So, you, ideally, want to do a study with cell therapy that is just a cell therapy.
Now, once we have established that this cell therapy is safe, and the CAR Ts are safe, and they are effective, then, the
next generation of studies is you can add things to it. Usually, we have to build on things. So, you have to have a basis.
So, right now, there are already studies looking at comparing CAR-T cell to standard therapy.
So, for like patients that are not just relapsed after 10 lines of therapy, patients that have relapsed a little bit sooner, maybe like second lines, first or second relapse. You can get CAR T, or you can get another therapy. And then, basically, this is something that has to be studied. There is no data, right now, that I’m aware to do any therapy after CAR T cell. So, that’s why people don’t do therapies because we have not gotten to it yet. So, that’s a good question. Somebody is probably doing a study right now doing therapy after CAR T cell. But I have not seen any results from any studies like that.
Tiffany, here’s a question that came in. This person, they’re anonymous, don’t know if it’s male or female. I’m 55 years
old, and I’m MRD negative after 1.5 cycles of treatment. My doctor wants to do stem cell collection but possibly not yet the transplant. Does MD Anderson ever skip the stem cell transplant and just freeze the cells, just wait?
Yeah. Certainly, there are some patients that we do that that, if they are MRD negative that would be a possibility. But, again, I think that’s a discussion with your physician because there’s a lot of other factors that come into play, such as what are their chromosomes, are they high risk, standard risk, their level of presentation, what the PET looks like. And so, it’s really going to be patient dependent.
Okay. doctor, here’s a question, and maybe you can decipher this for me because I’m not that familiar with it. Nicole writes in what is your experience with the presence of only oligoclonal bands? Can it ever be a band sign? I’m nine months out from stem cell transplant. And the M protein went from 0.06 to the bands in the last one.
So, oligoclonal means that it’s normal. It’s like your normal immunoglobulin. So, that’s usually a good sign. It means usually the sign of deep remission. So, that’s a good thing. What that means is you probably have a deep remission, which is usually either very good partial remission or a complete remission. And what it means is that you’re normal, you’re actually starting to have normal plasma cells in your bone marrow that are actually making normal immunoglobulins. And so, the pathologist, when they look at your electrophoresis and your immunofixation, they’re seeing that there are normal immunoglobulins. And they just say, okay, we see some bands in this test. And these are probably just normal bands. So, that’s a good thing to have.
Okay. Tiffany, so, we’ve been talking a lot about CAR T. And I just want to help everybody understand what it is because it’s been very much in the discussion of myeloma for people like Cherie who needed lots of treatment. How do you explain CAR T to people?
It’s a good question. What I explain to them is that because a lot of patients have already had stem cells, so they’re familiar with having their stem cells collected. So, I tell them it’s similar to that, but we’re going to collect your T cells. And T cells are a type of white blood cells. And those cells will then be collected and sent to the company where they will manipulate the T cells to go after the myeloma cells. And that they will get chemotherapy prior to having their stem cells reinfused. And then, their stem cells will be reinfused. So, a lot of patients, they’re pretty familiar with it because they’ve all had stem cells.
So, they get chemo. And then, I’m going to get the stem cells. And so, that’s usually how I explained it. I try to keep it pretty simple, for them, because it’s quite a complicated process.
Right, okay. And so, where are we now, Cherie? You went through it. And so, for you, it was kind of the leading edge because you, I don’t want to say you failed the treatments, the treatments had failed you. And so, this was really your last hope, right?
Yes, it was. The last time I remember going to MD Anderson and talking to my oncologist, and he said, “Well, we can now go to four different medicines, instead of the usual three.” And he’d had a couple of patients, and it seemed successful. And I just knew my trend. And, at that point, I needed monthly platelet infusions and filgrastim (Neupogen) shots constantly. So, it was both the chemo and the cancer were destroying my body. And I had heard about CAR T. And I said I’m done with chemo. I want to really pursue the CAR T, which, sadly, at MD Anderson, they started it I think a week after I had my cells returned to me. So, it’s been a 14 -our flight or $500.00 ticket to…
…there’s an element, as these trials open up. So, I just want to go—first of all, we do have time for a few more questions. So, send them to firstname.lastname@example.org. And I mentioned Caroline a long time ago. Caroline, I didn’t want you to feel lost. So, let me see if I understand. She says, “How will knowing disease state or using MRD measurement technology change treatment plans?” So, Doctor, I just want to understand. So, what do you do with the information? So, somebody says what’s the prognosis, is it changing what treatment you use or when, based on the MRD results?
We don’t have any evidence to change treatments. So, these are all questions that need to be answered, in the next few years. So, the question of, if you are in complete remission, MRD negative, and then, you get another test done, and you go from negative to positive, do we start treatment, if you are not on treatment? If you were on treatment, do we switch it? All of those things, and how often do we test for it. We don’t have an answer for those questions. We really don’t have a guidance for that. So, it’s really just, when we test for it here, it’s just so because the technology is available.
And we know that it’s prognostic. So, we know that patients that are negative, they seem to do better. So, it’s nice to have the information, but there’s not much that we can do with it, right now, except just make someone happy telling them this is already negative. But there’s not much that you can do with information. And that’s why Tiffany was saying, Dr. Weber, ewe don’t do it, unless—we test after treatment.
And every time after treatment, we test for it. And if it’s negative, okay, we know that’s the best level of remission that we have. But what does it mean, in terms of treatment? We don’t know that. So, a lot of centers don’t even do MRD.
Okay. Yeah. So, that’s my next question. So, we have people all over the world watching. So, Cherie has been a patient of MD Anderson. She also went over to Nashville. They have a big center there. These are major centers. But a lot of people are treated at not such a good place or maybe not even with a hematologist/oncologist who has a big myeloma practice. And we’re talking about very sophisticated testing. We’re talking about 10 to the 5, 10 to the 6, super sensitive testing. And you’re saying well, what would we do differently?
So, should people watching, Tiffany? If somebody said to you, I live somewhere else in Texas, but I come to MD Anderson—but should the local level, in Lubbock or someplace, should I be lobbying for MRD testing? Tiffany, what do you say? I want to get the doctor’s response, too.
That’s a good question. It’s also a hard question because, for me, I always go back to, if you have a test, is it going to change what you’re doing? And while MRD status is good to know, I always also go to the flipside. If a patient is told they’re MRD positive, how are they going to feel, after that result. And then, if they’re in a community practice where they’re seeing an oncologist who maybe doesn’t see a lot of myeloma, and now, you have this patient who feels totally deflated because they’re MRD positive.
They go and they look on the internet. And they see, oh, my gosh, my prognosis is worse. And so, what happens, in that scenario? And so, I feel like we shouldn’t leave patients out there who are going to be feeling deflated, without being able to pick them back up and give them hope. And if they’re not in a place where that can occur, then, maybe it’s better not to do the testing. But, again, I think the patient’s situation and having the patient have that discussion with the oncologist is important. But I certain feel like a patient should be able to also have hope, if they do come back MRD positive.
Doctor, what do you say? Again, you do MRD testing, at certain points, because—and you’re also doing research with your colleagues around the world trying to figure out where does it fit in, and what do you do about it. But that’s not always happening, at the community centers. And they’re not doing that research. So, just for our worldwide audience now, what do you want to say about MRD testing? And I’ll just say for me, and I think, Cherie, you agreed, I want to know, personally.
Most patients, when given the option, they prefer to know. I think, for patients though, one thing that we try to have a community of oncologists and practices. And our own techs actually send their samples here, so we test them here. And it just turned out to be something that was logistically not feasible to do. So, we’ve tried to do this, so that people that cannot come here, their oncologist can send the samples. And the physicians will be happy to do it. But, in terms of our lab, the volume and all of this, it’s just not practical.
So, this is not something that we could achieve. Now, for the community oncologists, community oncologists, usually, they don’t test. They don’t do advanced flow cytometry. So, minimal residual disease testing requires advanced flow cytometry, which is like a new generation where you have some machines that can test many cells, at the same time. You need to have some software that can do that. You need to have someone who is very experienced. If you don’t have a very experienced pathologist reading this test, they’re going to result in tests that are not correct. And that could be an issue.
And so, I think that, if you don’t have the technology to do it, it’s better just not to do it. I think that, when we start changing treatment with this, I think that everyone will open up to it more. I think that it’s very good that the FDA has approved the clonoSEQ test to test for minimal residual disease because I think that’s easy, so the community oncologists can send the samples to Adaptive Biotechnologies.
And they can test us and give our result back. And now, the advantage of—so, that’s, basically, what I would say to these patients. But let me just add something to that. So, basically, if you don’t have it, don’t worry about it. If you really want to have it, and your place doesn’t offer it, you have to go somewhere else because, if where you are, they don’t have it, it’s better that they don’t do it because it’s complicated to get set up. It’s not easy. But now, if you compare flow cytometry to sequencing, so that’s DNA sequencing, DNA sequencing seems to be better.
And so, this clonoSEQ test, the advantage of this test compared to flow cytometry is that, with this test, you can look at different populations of myeloma, within the same patient. So, if you send these tests on diagnosis, they’re going to tell you, okay, 80% of the myeloma has this. And then, the rest, 15 percent, looks like this, and 5 percent looks like this.
And it’s going to tell you that. Whereas the flow cytometry doesn’t tell you that. Now, this test can be done, the sequencing, can be done on almost any patient. Flow cytometry can be done in every patient. So, some patients may not be able to do the sequencing, with the new generation of the sequencing test, the clonoSEQ. Every time, they can read more and more patients. But those are the main limitations. The main limitations of flow cytometry is it cannot inform you on the biology of the myeloma, in terms of how many different myelomas are there, sub myelomas are there in the myeloma.
So, that test cannot inform you of that. But some patients may not be able to do it. Whereas the flow, you can do it in everybody, but it’s not going to tell you about the subpopulations of myeloma. So, those are two tests that are, basically, used for right now.
I take away as sort of the common man here a couple of things. One is, and we’ve said this on so many of our programs. Cherie, I’m sure you agree. First of all, if you’re living with myeloma, I, personally, think you may want to check in or get a second opinion at a major center, whether it’s MD Anderson or one of the others. And I like the full work up. The other thing that’s going on is the testing continues to advance. So, if I got you right, you’re talking about one person having almost little subsets of myeloma with their own blood, right? Not just one myeloma, but different types. So, it would be super sensitive. Then, the question is what does it all mean differently now that you know. This is like crazy-making. So, it’s kind of like, first of all, have a team that you trust. And recognize, thank God, wouldn’t you say, Cherie, that myeloma patients, in your wonderful example, are on a much longer journey now than ever before You’re such an example of that. And so, this discussion, you’re kind of flowing with your myeloma. Hopefully, it doesn’t come back, but if it does, the testing is going to be more sophisticated. The treatments are going to be more tailored.
Yes. If I may say, too, when I was first diagnosed, I found out I had multiple myeloma, which I was told was a tradable yet incurable disease, at 44, that’s pretty devastating news. I thought, if I get cancer, you’re going to treat it aggressively. I’m going to go bald for six months or a year, and then, my life goes on. That’s what I thought about cancer. So, to have something that continues on and on is pretty tough to live with. Hopefully, getting to an older age.
And for me, the journey has been both physical healing and emotional healing. And physically, I’ve gotten better and better through the years, now, thankfully, after CAR T especially. But, emotionally, too, that is a lifelong commitment and exercise of trying to stay in the now, trying to stay positive, trying not to have multiple myeloma at the forefront of my thoughts, in everything that I do. And I think MRD negative has played a huge role for me because it has given me some piece of mind that, even if I’m going to relapse, maybe it will be longer. And, hopefully, I’ll stay in remission long enough for another trial to come along for me.
Yeah. Well, we’ll pray for you exactly that. And I hope so. And I know many of the people watching, and I’ve met a lot of myeloma patients over the years, I’ve been doing these programs since the mid ‘90s.
And, certainly, we’ve lost some people. But so many people are doing better. And there was another treatment waiting for them. And there are others waiting for approval now or close to approval, as we head towards 2019. So, I think learning what’s the right testing, what does it mean, what treatments line up with that, when CAR T, understanding the longevity of that, or who does it work for. And I will just put in a plug for a big meeting coming up. The American Society of Hematology meeting is here in my home county, San Diego. You’ll probably go, Doctor, Tiffany, I’m not sure are you going this year. It would be great to see you.
And so, these studies we’re talking about, trying to answer these questions, it comes out at meetings like that. And there will be a lot of discussion. Who is CAR T right for? What more do we know about MRD testing? When do we do it? What do we do differently because of it? Doctor, did I get it right?
Yes, yes, great.
So, we will be reporting, and my wife Ester and I will be doing some daily wrap ups on the Saturday, Sunday, and Monday of ASH. So, if there’s news about that, we’ll be talking about it. But I think here, we’ve given you a good baseline of where understanding is. So, as we get close to the end here, Tiffany, so people have been listening for 90 minutes. We have a couple of hundred people who have been listening and more. How do people get their head on straight on where this testing and the range of treatment fits better for them? Tiffany, so just help us. Like Cherie was saying, it’s the emotional part of it, with this moving target of myeloma.
I think I would just tell patients have a discussion with your team about if it’s appropriate for you, at this moment, or if it would be appropriate, in the future. And I think that all of the different response criteria in MRD, I think it’s one of those things that it’s not just going to—they’re not going to be able to really understand it, after just one discussion. I think it’s a continual discussion. And so, I would first say let’s just take it one step at a time. Are you in a very good partial remission? If you are, then, it would be a time to have that conversation about MRD testing or not. If you haven’t gotten to a very good partial remission, let’s just focus on getting you there, rather than looking at the whole entire process, all at the same time.
Yeah. It’s a lot. And I think, for the family members, often, not Cherie, and not when I was diagnosed with leukemia at 45, that for somebody where, if you’re in your 70s or maybe 80s, and you’re dealing with myeloma, you may have an adult child or a friend helping you make these decisions.
And you feel like you’re kind of drinking from the fire hose, as the treatments have become three, four treatments together, or CAR T, or tandem transplants, or all of these kinds of things, and then, all of the different tests. And the kappa, lambda, and M spike and bands and MRD, it’s a lot to drink in. And you don’t have to feel overwhelmed. How have you—Cherie, would you say knowledge is power? Or having the right healthcare team is part of it? How do you cope when, thank God, there’s more going on in myeloma than ever before?
Yeah. Knowledge is power, absolutely, a good team that I have at MD Anderson that has been phenomenal, friends’ support.
And knowledge can be a double-edged sword, too. When my last test results came in from MD Anderson, actually, last month, I was so scared to open it because having achieved MRD negativity now, I’m so afraid that the next test is going to show I don’t and that I’ll fall back in that whole thing again. So, like I said, the mental staying mindful and staying positive and just believing in your doctors and your team and knowing that there will be something else on the horizon that can prolong our lives.
Yeah. And I will tell you, there is a lot going on. But what you know now is you’ve got the little dog that wants your attention. And you’ve got your kids that want your attention. And you’re feeling good today, right?
Oh, absolutely. Absolutely. I’m beyond grateful. I truly believe that, for me, it was a miracle. I was in a wheelchair last year, and now, I’m out teaching yoga again, incredible.
Okay. I want to mention that, if you go on the Patient Power site but also on some of you on Facebook groups or whatever, Cherie has written a lot about it. Cherie, what’s the name of your book?
I have a book, “A Pilgrimage Without End, How Cancer Healed My Broken Heart.” And that kind of ends at when I, in 2016, when I started daratumumab (Darzalex). And I thought that was going to be the end, and I was going to be on that indefinitely. Since, a lot has happened, obviously. So, I’m working on another book now, “Pilgrimage Towards Health, Keeping Hope Alive.” So, I hope sometime in 2019 that will come out. And yeah, now, I’m just advocate and activist and take a lot of questions. Never the doctor questions but more the emotional support that I love to give.
And raising money for research.
Yes, I did, for MD Anderson last year, for my 50th birthday, yeah.
Thank you. Well, we’re so glad that things have worked out. So, doctor, just to wrap up then, this MRD testing that we’ve talked about a lot, along with the other test, is sort of a moving target, right? As is myeloma treatment algorithms, right?
Moving target, yes.
Yes. So, the idea is that patients have the right team. And like you say, you see some patients every month. And it’s an active discussion, right? It’s an iterative discussion.
So, put it all together though, Doctor. I always like to end this way. Are you hopeful? Because, in the end, what we want to take away as viewers is you’re our barometers. You and Tiffany are our barometers. Knowing what you know, and Tiffany, you said you’ve been doing it 14 years now, right?
So, doctor, are you hopeful for those of us who are living with myeloma?
Yes, of course. I think that—when I started doing multiple myeloma, all of my patients were doing great. So, this was like 2010, 2011. And it was on clinical trials at NAH with therapy that, at the time, was only given on clinical trials, from the therapy. Everyone was doing great. And I was thinking what is the big deal. Everyone is doing so great. How is this even possible? Like people didn’t used to do well. I think that people have to remember, studies coming out at 2003, the rates of very good partial response and complete remission with therapies, as of 2003, which is 15 years ago, was 10 percent.
And our rate of very good partial response and complete remission right now is, of course, if you do continuous therapy for a year, and most people are in very good partial response or complete remission. So, you went from 10 percent to most patients having it, so now, we’re doing great. I think that we need to figure out why, once we treat it, why it keeps coming back. And I think that’s something that we have not yet figured out yet. And there’s a lot of research trying to find out why. I think that patients will continue to do very well, definitely.
There’s a lot of hope, yeah, definitely. There are so many things that have been going on. There are so many new therapies that are working well. And, again, the self-therapies or the CAR, they’re just the first generation. There are people who are improving on them.
They’re adding things to it. And also, what happens if you give it to someone who has had 10 lines of therapy, but if you give it to someone without a diagnosis? What’s going to happen? We don’t know those things. What if you give it in patients before they develop myeloma? What’s going to happen then? Are you curing them? So, yeah, there are so many things that we can do, right? We don’t have enough—we need more manpower to do all of it. It’s a lot of work. We have a lot of work here, in our department. We have so many things that we want to do. And I think that it’s like the manpower because there’s so much to do.
Or woman power, there you go.
Or women power, but there is so much to do.
Tiffany, I’m going to let you make the final comment. And that is 14 years there at MD Anderson, right?
Working in myeloma.
You’ve seen thousands of patients.
If somebody comes to you today, obviously, you’ve got to figure out what’s going on. But would you say we can end on a hopeful message?
Oh, I definitely. So, when I first started 14 years ago, the drugs that were approved that we used—the drugs we had available was bortezomib, thalidomide (Thalomid), transplant, Vad, and melphalan. And that was what we had available to us. And
if you just look at the number of drugs that are now FDA approved for the treatment of myeloma, it’s really remarkable how many options that we have. And every day in clinic, it’s funny because we see these patients every month. And they really do become like part of your family. And I look, and I’ll be like, oh, my gosh, you came right around the same time that I started.
And I’m like oh, my gosh, that was 14 years ago. Wow. And so, there are most definitely reasons to hopeful. And if the
next 14 years are like the last 14 years, then, patients will do really, really well.
Okay. Amen. All right. I want to thank everybody with us from Houston, Texas today. Cherie Rineker, thank you so much. And all the best to you. Tiffany Richards, thank you. Elisabet Manasanch, thank you so much for being with us. We really explained this in detail. Remember, there will be a replay. And there’s a survey usually we have afterwards. Stay tuned for what we have coming up from ASH. I want to thank the Patient Empowerment Network for pulling all of this together. And I want to thank our financial supporters, Sanofi, Celgene, and AbbVie for supporting the myeloma community. I have a cough I get from a leukemia treatment. In Carlsbad, California, I’m Andrew Schorr. Thank you for joining us. And remember, knowledge can be the best medicine of all.
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https://powerfulpatients.org/pen/wp-content/uploads/Measuring-My-Myeloma-With-MRD-Testing.png600600Kara Rayburnhttps://www.powerfulpatients.org/pen/wp-content/uploads/New-Logo-300x126.pngKara Rayburn2018-12-14 19:12:072019-09-02 12:28:39Measuring My Myeloma With MRD Testing: What Is My Disease State?
“Every three to four months I get a wake-up call that my life has taken an unexpected turn. Believe me, there are daily reminders of how different I am now; but scan time is big time scary time, mentally. It takes living with cancer to yet another level of heighten sense of mortality and anxiety. So MANY thoughts and what ifs course through my brain. SO hard to shut it off.” – Katie Edick, METASTATIC AND MAKARIOS.
It may not be officially part of the medical lexicon yet, but “scanxiety” is no less real for those of us who have experienced a diagnosis of cancer. Pamela Katz Ressler, RN, MS, HNB-BC, founder of Stress Resources, describes scanxiety as “the anxiety, worry and fear that accompanies the waiting period before and after a medical test.” She says it is a common side effect of modern medicine. “As our medical system has become more technologically adept at measuring indicators of disease so too has our anxiety” she says. “Scanxiety is an unintended consequence of medical testing, yet it is one that is rarely discussed by medical professionals with patients.”
Writing in Time magazine in 2011, lung cancer survivor, Bruce Feiler, characterized scans as “my regular date with my digital destiny. Scanxiety, he wrote, arises from the feeling of “emotional roulette wheels that spin us around for a few days and spit us out the other side. Land on red, we’re in for another trip to Cancerland; land on black, we have a few more months of freedom.”
One of the most common emotional and psychological responses to the experience of cancer is anxiety. Cancer is a stressful experience and normal anxiety reactions present at different points along the cancer journey. Did you know that the word anxiety comes from the Latin word anxius, which means worry of an unknown event? Worry, in turn comes from the Anglo-Saxon word “to strangle” or “to choke” – which may very well convey the feeling we have right before a scan, or whilst waiting for its results.
Anxiety is a natural human response that serves a biological purpose – the body’s physical “fight or flight” (also known as the stress response) reaction to a perceived threat. Symptoms vary for each person. You may experience a racing or pounding heart, tightness in the chest, shortness of breath, dizziness, headaches, upset tummy, sweating or tense muscles. Alongside these physical manifestations, you may feel irritable, angry or apprehensive and constantly on the alert for signs of danger. All of these signs indicate that sympathetic arousal of our nervous system has been activated, preparing us to stand our ground and fight or take flight and run away from danger.
Scanxiety, points out Katz Ressler, can be intense and may mimic symptoms of Post-traumatic stress disorder (PTSD). PTSD is an extreme anxiety disorder that can occur in the aftermath of a traumatic or life-threatening event. Symptoms of PTSD include re-experiencing the trauma through intrusive distressing recollections of the event, flashbacks, and nightmares. As Susan Zager, founder of the non-profit organization, Advocates for Breast Cancer (A4BC), points out “MRIs are very noisy – and because my recurrence was found through an MRI biopsy, I have many memories of scary results from that test.”
It’s been over ten years since I was diagnosed with breast cancer and while my scans are less frequent these days, the anxiety never fully goes away. As blogger and patient advocate, Stacey Tinianov writes, “This is reality even after almost five years with no evidence of disease. I’m not a worrier or a hypochondriac. I’m just a woman whose body once betrayed her by growing a mass of rouge cells that, if left unchecked, have the potential to bring down the house.”
If you are facing an upcoming scan and feeling anxious about it, you may find the following tips helpful. Based on my own experience and the experience of others in the cancer community, these tips are some of the ways in which we have learned to cope with scanxiety.
1. Identify your body’s stress response
How we experience stress is individual to each of us. Learning to tune into what happens in your body when you perceive a stressful situation is the first step in understanding your individual stress response. Does your jaw clench? Is your breath shallow? Are your muscles tense? When you become more aware of your physical response to stress, it will help regulate the tension when it does occur.
2. Pay attention to your breathing
When we are stressed we tend to breathe more shallowly. Shallow breathing, which does not allow enough oxygen to enter our bodies, can make us even more anxious. When you feel stressed, practise taking some slow deep abdominal breaths. Deep abdominal breathing slows the heart down and lowers blood pressure. The advantage of focussing on the breath is that it is always there with us. We can turn to it anytime we are feeling anxious.
3. Stay focussed on the present
Focussing on the past or future can increase your anxiety. Katz Ressler recommends staying focused on the present moment as a way to quieten anxious thoughts. “Methods that have proved successful for scanxiety focus on tools of resilience, often based on mindfulness strategies,” she says. “Key in these methods is to focus on the present moment and not on the outcome of a test or scan.” Focusing on each and every breath is an excellent way to begin to increase your awareness of the present moment. If you would like to try some short mindfulness meditations to increase resilience and help decrease anxiety, you will find some on Katz Ressler’s website.
4. Use visualization
By enhancing your relaxation skills, you are can lower the fight or flight response that is often triggered during times of increased anxiety. Visualization involves using mental imagery to achieve a more relaxed state of mind. Similar to daydreaming, visualization is accomplished through the use of your imagination. Karin Sieger who has recently received a diagnosis of cancer for the second time, shares this advice, “I certainly keep my eyes shut when inside the machine; focus on my breathing; remind myself this has a start and finish; and then generally try and go in my mind to a calm meadow and have a snooze. Because for once there is nothing else I can or should do for the next minutes.”
5. Practical coping tips
Karin also points to the claustrophobic feeling of being enclosed in a scanning machine as a contributor to anxiety. Stage IV breast cancer patient, Julia Barnickle recommends an NLP (Neuro Linguistic Programming) process, called the “Fast Phobia Cure” which worked for her. “I still don’t like enclosed spaces,” she says, “but I certainly don’t panic like I used to.” Blogger Margaret Fleming also recommends asking the attendants for any items that can make you more comfortable, such as ear-plugs or a blanket.
6. Break the worry habit
Worry can be a habit and like all habits can be broken. As soon as that worry voice starts in your head, examine it before it takes hold. Ask yourself, will worrying about this help me in any way? Julia writes, “For me, worrying is a choice – as is happiness. In the same way that I choose to be happy, regardless of what happens around me or in my own life, I also choose not to worry about – or fear – what might happen in the future. I tend to believe that things will work out for the best. And besides… what will happen will happen, regardless of whether or not I worry about it – so I don’t see the point of spoiling my enjoyment in the meantime. I prefer to get on with my life.” Jo Taylor, who is living with secondary breast cancer agrees. “I have taken the view that nothing will change the outcome, therefore there’s no point in worrying,” she says.
7. Create an anxiety worry period
Many patients speak about the most anxious period of time being the time you are waiting for scan results. As stage IV blogger and patient advocate, Susan Rahn, writes, “Waiting for the results of any scan that will tell you if the cancer is active and taking up residence in new parts of your body is just as anxiety inducing, if not worse, as the time leading up to and the day of the actual scan.”
You won’t be able to break the worry habit entirely and ignoring anxious thoughts and feelings can sometimes make them worse. It’s still important that you acknowledge your worry but not let it control your life. One tip is to designate one or two 10-minute “worry periods” each day, time to fully focus on your anxiety. The rest of the day is to be designated free of anxiety. When anxious thoughts come into your head during the day, write them down and “postpone” them to your worry period.
8. Take Some Exercise
Exercise is one of the simplest and most effective ways to reduce stress and anxiety –providing a natural outlet for your body when you are exposed to too much adrenaline. Jo Taylor, who runs an Exercise Retreat To Recovery program in the UK, finds that staying physically active is helpful. “I am still very nervous in the time between scan and reporting, “she says, “but throwing myself into work or exercise or anything else I do is helpful.”
Virtually any form of exercise, from aerobics to yoga, can act as a stress reliever. The important thing is to get moving, even if that means just walking around the block. Movement with flow and rhythm can also help calm the body and mind. Katz Ressler recommends gentle yoga and walking meditation as proven ways to decrease the stress response and increase the body’s natural calming mechanism. “Finally, remember”, she says, “while you cannot control the outcome, you can work to control the experience and that starts with building resilience.”
I hope you will find these tips helpful and if you have any other coping tips please feel free to add your advice in the comments below.
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.
https://powerfulpatients.org/pen/wp-content/uploads/Natural-Body-Scrub150ml-_-5.07oz.png600600Marie Ennis-O'Connorhttps://www.powerfulpatients.org/pen/wp-content/uploads/New-Logo-300x126.pngMarie Ennis-O'Connor2018-07-24 16:35:312019-09-02 12:27:32Coping With Scanxiety: Practical Tips from Cancer Patients
Dr. Gareth Morgan, Director of the UAMS Myeloma Institute, discusses new oncogenes in myeloma and importance of testing at the time of myeloma diagnosis to set a treatment plan at the American Society of Hematology (ASH) Conference 2017 in Atlanta.
https://powerfulpatients.org/pen/wp-content/uploads/Understanding-The-Myeloma-Genome-and-What-It-Means-For-Patients.png600600Kara Rayburnhttps://www.powerfulpatients.org/pen/wp-content/uploads/New-Logo-300x126.pngKara Rayburn2017-12-18 17:16:072021-01-18 15:07:43Understanding The Myeloma Genome and What It Means For Patients