Emotional and Physical Wellbeing in Multiple Myeloma

Michaela:
Hello, my name is Michaela and I'm from Germany, but live with my husband in Buffalo for almost eight years, and I would like to give you an overview about... First, thank you so much that I can be here. I feel really honored to talk about what's near and dear to my heart. Oops, that was too near. But yes, so I would like to give you an overview about what influences multiple myeloma has on your body, on your mental health, on maybe your relationships, and also your bone strength, your pain, so a lot of things I will cover today, and I hope it's not too boring. But I also want to show you how exercise, and especially being active, can improve your quality of life. Since we've heard earlier there are so many new treatments out there, we live so much longer with that disease and, therefore, it's worth fighting for the quality of our life.

I would also like to give you some practical ideas how that can look like. First, I would like to show you that graph. Back in Germany, we asked myeloma patients, "Did you ever work out before your diagnosis? Were you active? How is it now with that, knowing that you have that disease, and is there anything you wish for the future?" As you can see in the middle graph, people living with their diagnosis are much more likely to be sedentary. The blue part on the down part is that it's doing nothing right now. Sometimes it's because we are told from our medical care providers that we are not about to move at all, because we have the risk of fractures, but we could see in the results that the wish for being more active is there, and I also want to show you the next slide. Here in the US, we asked not only myeloma patients, but also the people with the precursor diseases, the smoldering myeloma and the MGUS patients, "Is that for you the same? Did you do more before you got that diagnosis? How is it with the outlook for the future?"

We saw the same outcome, that as soon as the people got their diagnosis, it changed the habits with being active, so exercise really seems to be needed. As you can see here, I have written down a few benefits of exercise. Besides of maybe getting in shape and losing some pounds, there is also that not only your muscles get stronger, but you can also benefit in having less pain or your fatigue can be impacted. Your daily activities, you have to do the chores, the gardening, everything that you work on can be much easier in being stronger. Also, studies have shown that bone health is something that we can impact with doing exercise. I will go into more details later.

Over the course of your disease, most of you experience, at one point that you have a bone lesion, so the cancer eats your your bone and makes holes, and therefore, the chance that you might have a fracture can be high. The graph on that picture shows that, mostly around your diagnosis, you might experience such fractures. That's maybe why you got the diagnosis and, therefore, you might have pain and don't dare to move, so we tend to be more sedentary. I also want to show you a very interesting factor, that this group of people found out in the study that people with a precursor disease, if they are with their body mass index higher than the norm, the odds to get a progression into myeloma is 35% higher each five points that are higher than the norm. I found it very interesting. Oops, that is...

Yep. The good news is that we can actively do something to impact that disease and maybe mitigate some of these symptoms, and sometimes we can even have that manage it better. The first benefit I would like to talk about is muscle strength, and I would like to show you a little bit of scientific first. 2017, there was a study done, it's called Exist Trial, and patients did 18 weeks of muscle strength training and, afterwards, they found out with some tests that, indeed, not only the upper body with the grip strength was better, but also lower body. The second outcome, the STS is a situ stand, maybe one or the other few had to do that themselves, getting up from the chair in 30 seconds as often as you can, so from 15 to 80 reps showed that your lower body strength was higher.

I come from Roswell Park in Buffalo, New York. We did a pilot study three to four years ago, I think it was around COVID, and we had the same outcomes. As you can see in the graphs here, the 30-second situ stand, we had two cohorts of strengths training group and a group that only walked for six months, and that sounds a long time, but interestingly, the people didn't find it so long, they barely wanted to leave after about that six months, so it was really nice, but from baseline, the graph went up, so they really got stronger with their legs, and even the walking group showed improvements, which we didn't expect. One exercise you can do to strengthen your legs is squatting, and I just wanted to show you that doesn't mean you really have to do it until your body's on the floor.

You can do situ stands, you can walk the stairs, you can walk around the mall if the weather's not good. All that helps to increase your muscle strength, which is really important, and I show you in the next slide, why. In that pilot study, we also tested or asked our patients how hard it was for them to do their daily chores, and that is that the upper three pictures, the MPEG, that was a questionnaire, and the easier it was for them after those six months, the lower the number is. That's why the graph goes down. Next test was a timed up and go, which means you get up from the chair, walk 10 feet, turn around, and sit down. This graph goes down, that means they really got faster, and I'll tell you why this test is really important, because studies show that the faster you are on your legs, the better your outcome is for your treatment and your overall survival.

Because if your legs are strong, you are strong enough to get up from the chair into your car to the treatment, you get the treatment, and you can fight the cancer better. Therefore, even this interesting small test shows that having strong muscles is important. I want to show you and make it a bit more tangible what you can do to get there, and you don't need any fancy tools, you don't have to go to the gym. It helps already if you really daily walk or make a even brisk... You can stationary biking or you can rowing or even gardening is helpful. In that pilot study, we also tested endurance. Endurance is also important for your cardiovascular system, and maybe one or the other knows what that is, the six-minute walk test. Very, very boring. You get a wheel in your hand and you have to walk maybe laps or straight back and forth for six minutes, and that could be very long.

But we saw in the patients in that study that, starting from baseline, they really could do a longer distance, and our 30-second situ stands also increased. We also tested other parameters and found out that pain also decreased. As you can see from baseline, the graph was higher, walking and strength training had impact on how you experienced your pain, because you were moving more, therefore, your muscles had time to loosen up and then the tightness wasn't as bad and things could be more supported, the areas where you might have a lesion, and therefore, the pain really was reduced. That was nice to see.

Another benefit of doing exercise, we indeed can also decrease the symptoms of neuropathy. A neighbor city of Buffalo, Rochester, New York, they did a study even on that, and you can see here in that graph. They had two cohorts and patients who started their treatment and, at the same time, did exercise. That is the red graph. They had much less symptoms or much less severe, so it really is something that we can impact with doing exercise, especially resistance training, and I hope the picture comes up, balance exercise. The picture shows these heel raises where you rock to your toes back and forth, that's a very good exercise to get the blood flow going and also helps with balance. Lunges are very important. Everything that is with a staggered stance or maybe you do something only on one leg or on a towel already gives you a little bit of an even surface, and that helps you with the balance. Unfortunately, neuropathy can't be eliminated completely with that.

It would be nice, but at least it really has an impact, and I know from patients who told me that, during the exercise time, they really had less tingling and numbness in their feet, so it really helps. I apologize, my pictures seem to be a little bit not in order, so that was still with the pain. Examples to do exercises to reduce pain that should have come a little bit earlier already, I apologize, is doing stretches of all kind, and I could imagine that you probably got from your PTs ideas of stretches, really doing exercises with weight training. There are a lot of studies out there that show that aerobic training alone is not as effective as if you do it together with the strength training part. Don't hesitate to do something with weights and you don't have to get the fancy stuff. I have patients that they work out with water bottles or soup cans, and maybe you have a Theraband. There are so many ideas, you can just add a little bit of resistance. That already helps to give your bones some boost to get stronger, your muscles work better.

With our patients, we always try to do it also very practical. The last anecdotal example here, for example, I just love it. One patient, he told me, "What can I do to be able to carry the heavy turkey and put it in the oven?" We developed a special squat, a turkey squat, and we had a lot of fun. That was really nice. Exercise is so good for so many things, but also, as we heard today, the immune system, and immune system is a very important part of your body that we need to protect and support. In our pilot study, we did some lab tests with our patients and we checked the immune markers, and that could be a little bit confusing here, but just to say the red bars are the baseline numbers and the green bars are after six months of exercise, and we especially checked out a subgroup of T-cells, and you know T-cell are very important, especially when you want to have a CAR-T cell therapy, and we found out that, after exercise, they were less exhausted.

T cells can sometimes exhaust over time, because they have to sustain so many therapies and the disease itself, and so they were very exhausted at the beginning, but after the six months of exercise, they improved again, which means the immune system gets stronger and can be more effective in attacking the bad cancer cells. Examples, again, walking, doing the strength training, and I'll show you later a few examples with my emotional support husband. One very important symptom I also want to cover here briefly, fatigue. I assume that a lot of you had that symptom, maybe even before diagnosis, not knowing what is going on, but fatigue is very, very affecting our daily lives. I can imagine that, sometimes, you just don't want to get off the couch, but in just doing that, getting off the couch and maybe exhaust yourself physically helps you to push through that.
I can only tell you by anecdotal examples, patients told me, "I did not want to show up today," but they did, and afterwards, they just felt so more empowered and energetic, even though the muscles might have been tired, but they felt so much better. We also gave them, at the beginning of that trial, a Fitbit tracker, so we could track their sleep. They could sleep better afterwards. Here, just an example of all the activities you have to do, even just to get up, and the basic needs. We tried to cover exercises that helped you in doing that better, and I just thought I'd show you what we did. We did bicep curls and shoulder exercises, and sometimes you might not be allowed to do one or the other exercise, but there are so many variations and things. You can even do things in your chair to help your muscles to get stronger and do the basic things easier, and hopefully, then also enjoy the rest, also like chasing grandkids or whatever is fun.

Before you get started, though, I just want to give a few safety tips. It is super important that you really get cleared from either a primary care physician or better would be maybe your oncologist or myeloma expert. At Roswell, we could do that with a tumor board every week. We meet with experts from the radiology department and neurosurgeons, the myeloma experts, and then we check the current images of your spine and hip bones and arms, and see if there are any limitations or restrictions we should be aware of before you get started. That's really important, because as you've heard today, myeloma is so diverse and everyone is different. Therefore, it's important to make sure you are on the safe side, but otherwise, have fun, enjoy, have enough to drink. One thing I wanted to tell you also, if you don't move your muscles, you will lose them ,and therefore, I hope that I could show you that there are so many benefits to do it. It is really safe, we do it now for four years.

The last two years in our study, we do it virtually even, so people can stay at home, we equip them with dumbbells, with Therabands and then we do it via Microsoft Teams, and it's so much fun. I haven't expected that, because I thought, "Nobody will show. They will not turn on the computer," but they have so much fun, they laugh with each other. It's really cool to see that, and it's almost like a support group. That's what I wanted to tell you and I hope you enjoyed it. Thank you so much for your time here. We have seven minutes left, so I could theoretically show you a few exercises and, if you want to and feel comfortable, you can do it with us together. I have a special someone, my husband. I tell him what he should do and... Yeah. First, I was thinking if we can do that all together, but it's really... A friend of ours gave us that? I just wanted to show you that it's really safe and you can do it in different versions, in whatever level you are.

You don't have to have a fancy gym or equipment, body weight is sometimes just enough. For example, squats. That's a regular squat, but if you have issues in your knees, you can do mini squats. That is a mini squat, so you don't have to go all the way down. You can also do it in sitting. Situ stands, for example. I'm German, if I'm not happy and satisfied, I say, "Start over." It works. It would be good for the bones to do a jumping jack, a real one, but sometimes we are not allowed to jump, so therefore, there's a version, low-impact jumping jack. That is a very good whole body exercise, because you have to move your shoulders, your arms, your legs, and in lifting that up from the floor, already engages your core, so you have a whole body exercise with one movement. Lunges, lunches are very good for balance, good against neuropathy. These are already advanced ones. You can do stationary ones. You don't have to make a step.

You can just do that like that. Hold onto something. If that is too easy, you can grab a bottle of water or something else that is heavier and take that with you. Reverse lunges are a little bit easier on the legs, on the knees. Even high knees, which is for balance, but also good for your knee joints, because you don't have to go down. If you want to do something for your upper body and really want to get out some aggressive tendencies, shadow-boxing is always good. Like that, and you can really do that. My patients love that so much. I have the impression they really get some energy out, they did not think they have it in them. That was it, what I wanted to show you. Thank you so much. I hope you can take something home.