 So hello everybody. Good morning. Thank you for being here. My name is Lara Kürzer. I'm from the German Organization La Kimia Help I'm my alone my patient myself, and I'm lazy my alone my patient. So this is the perfect topic for me So I would like to introduce to you Very special guest from England and she's working in the Royal Surrey country hospital and and she's a senior physiotherapist and Her specialty is the rehabilitation of patients with complex and chronic diseases and she's also involved in teaching and supervision of students and other physiotherapists and assistants and She provides assessment to clinical diagnosis with inpatient rehabilitation and she assists with clinical specialists for the setting and monitoring of standards and policies of clinical practice and She participates and I think this is very important in the evaluation in evaluation projects To raise the awareness of current research Relent to this speciality. So she's up to date That's always important for us for us patients and Today she will share with us her expert opinion on the rehabilitation Self-care and quality of life and multiple myenoma. So thank you for being here. Join. Hi guys Hi, good morning. Mine. My name is Ja Hui Gan. You can call me Jia, which is short of Ja Hui and I'm a Chinese so it's quite hard to pronounce it anyway So just have a background introduction of myself. I Since I graduated with a background of physiotherapists, I used to work in Singapore in a public hospital where I went to on my rotation and I Oncology rehab is something quite niche to Physiotherapy field 10 years ago. I first Developed my interest in oncology rehab and also first as opposed to multiple myenoma occasion Was when I was rotated to John Hawking Hospital Which is an American hospital. This was based in Singapore Following that I went to also Brooks University to further my study in Muscular Scatter Rehabilitation I also did some specialized study in cancer care study to further develop my interest in oncology rehab Following that what brought me back to you okay, it was because I married to my husband who is an Italian Right today We let's have an overview on what we are going to discuss for the next one hour First of all, we're going to explore what the challenges faced by myeloma survivor in their daily life and what a barrier for them to participate in physical activity or exercise and Also, we're going to look at that. What are the facilitator to overcome this barrier to make them exercise and also to enhance their ability to participate in self-care and We also have a going to have a little bit of insight on what are the available evidence of exercise program at different phase of disease and also we need to know what are the safe Prescriptions to progress our exercise so with a remarkable advancement in disease-directed typing life expectancy in myeloma survivor Extending however with accumulative burden of the bone disease like lute bone disease Compromise immunity and treatment related toxicity could actually prevent the return of them to good quality of life and also the ability to self-care and self-manage It could be wise to focus on non-invasive Strategy to maximize their quality of life and well-being It's a plasma cell bone marrow cancer 80% are more of the myeloma survivor as we present that with bone morbidity This actually position them at high results pathological fracture also the musculoskeletal pain World War Collapse by long-born fracture This could lead to skeletal deformity muscle wasting, deconditioning, function and decline or even lead to disability But on the other hand this bone pathology and musculoskeletal Condition could mean that they could benefit from increase their activity level so the the main side of multiple myeloma including Crab, we call this a crab, which is short of hypercalcemia renal failure, anemia and also bone lesion could be the barrier to stop them to participate in exercise program and Secondly the side effect of myelobrathic therapy can be anything pain, neuropathic, fatigue, weakness and also their psychological effects such as fear of infection, lack of motivation, something that even got into depression and also a lot of them will tell us that I'm not sure how to exercise safely Lastly as a multiple myeloma is highly prevalent in elderly, so actually later Declined in physical ability, it could be an unavoidable issue, just like the issue in an aging population So who are the people actually affected by sight and symptoms of multiple myeloma? So as a accumulated burden disease of sight effect survivor With advancing age, high age, as well as multiple, less, multiple myeloma disease tends to be affected the most This sight effect might not just impact on the psychosocial well-being or myeloma survivor but might also, a lot of times I would say not might also, a lot of times they also impact on their closest environments such as their family member as well as their friends What are the physical activity guidelines for cancer survivors? According to American Colleges of Sport Medicine and World Health Organization they both suggest at least 150 minutes of moderate intensity aerobic and strengthening physical activity At least 75 minutes of vigorous intensity similar activity for cancer survivor and I mean physical activity This means that then you're not necessary to go and do a lot of sports More toners or we call it sparring exercise training You can do anything which is enjoyable and Functionate to yourself such as leisure time physical activity Transportation like walking to walk cycling to walk cycling to shopping Any occupational related activity such as your work household course, it can be very tiring as well. You need to do cleaning laundry gardening and So-tongue as well as you can plan for any physical activity in the context of your daily or personal family life such as Decay of your child children play with your grandchildren walk the dog or joining any community service activities so There are actually multiple way to accumulate these 150 minutes of moderate intensity exercise With a concept of short bout like five or ten minutes of moderate intensity and gradually build it up to hundred fifty minutes per week So as a definition, what is moderate intensity exercise? so if we perform an exercise test professionally On a treadmill or by a cycling test So we are actually targeting 50 to 70 percent of maximum heart rate According to a both rated percif-exception scale. It will be four to six out of ten that you should feel a Bit light to somewhat hard. So it's not too difficult. Oh In ten of vigorous intensity exercise So we are targeting 70 to 85 percent of the maximum heart rate. Oh according to the both rated percif-exception scale you should feel Seven to eight out of ten, which is somewhat hard to heart But not very hard. We will define it as a very hard intensity of exercise So how many of you make this exercise? Activity level per week. Can you raise your hand? briefly If you do an exercise log how how about your daily activity your physical activity Cleaning walking you might achieve this level a lot of people achieve it so How many myeloma survivor actually met that physical activity guideline So during active treatment period, they were approximately 7% of them met the physical activity guideline, which is quite boring. Oh During the off treatment period, there should be more active But there were about one-fifth of them met the physical activity guideline According to John's eto 2004 Despite of low number of myeloma survivor met the physical guideline They suggest that by just engaging in moderate intensity exercise They do presented with higher quality of life score In another study latest study by Craig Dandy Dutting There was slightly increased number basically few percent of increased number of myeloma survivor met the physical activity guideline When we compare with the other cancer survivor group, there were higher number of them Which is 30 to 45 percent of them met the physical activity guideline and So These findings suggest that myeloma case Can be more deliberately Lividating with other type of cancer and this could represent an additional Challenge for them to call dissipate in regular physical activity or Simply just self care and self-efficant self-efficacy in their activity daily living so now we're going to look at this Literature review down your systematic way with the title of the effectiveness of exercise program in Patient with multiple myeloma, which was my study in 2016 So just a brief information about metatology So manual search in addition to 10 electronic data base search will was contacted With the aim to prevent omission. So we We also perform manual search at local library such as the library at University of Oxford and University of Oxford-Berthie University and also we went to the reference release Try to identify any exercise program, which is specifically in multiple myeloma case On the other hand, we also perform some website search Google scholar search and consultation We team the available clinical framework. Hopefully we can identify any article Which hasn't been published. Oh, it's going to be published To following the results itself. We only managed to identify seven study We was not too bad, I will say From the study from these seven study select tab, we analyze the effectiveness of exercise program to Teammatic analysis and we looking through the specific elements of the exercise program and it's related outcome measure internal physical outcome measure physiological outcome measure or any clinical outcome measure used by the medical oncologist Exercise performance the quality of life psychological well-being in order to answer this research question so from the eventually the data We obtain from the data analysis We also went to some appraisal for the quality of the study selector, but we're not going to talk in detail today From the for the from this literature review, we divided the outcome into Three phases of exercise intervention. First of all, we're going to talk about The exercise intervention during a active multiple myeloma treatment phase so during Active myelobrative treatment phase. We managed to identify for home-based exercise program There were individualized assess home-based exercise program, which is a one-off session and while the power discipline were undergoing high-dose chemotherapy or autologous stem cell transplant so There went to stretching exercise Basically, you need to warm up a little bit to get your engine warm out and get yourself ready to prevent any musculoskeletal injury and Also aerobic exercises. They're suggesting to do any aerobic exercises. Usually they like to do walking and they the recommended Intensity here it seems a bit Contracted because here saying there is about 65 to 80 percent of the maximum heart rate But seems like between moderate to maximum intensity, but actually The author gave them the board rate that perceived essential scale to go home and suggest them to just work at the light They got to feel between light to somewhat heart, which is moderate intensity exercise So I will say that went to moderate intensity exercise Then they also have to go into strengthening exercise. Basically, they use tera-band to progress their strengthening and You may observe that these four home-based exercise basically have a common order, which is Column Dr. Column who has a nursing background and they were done this study in United States in quite a prominent cancer research centre and But the different of these hope for home-based study is the duration of the program with apparently have reduced from six months To 15 which which is less than four months and they also use the profit let a appointing alpha to Targeting the anemia effect. Hopefully by working on this the anemia effect could suppress the confounding factor to cover masking the effectiveness of home exercise program and all these for all these study are actually randomized control trial with a treatment group and control group accept the second study by Kuhn and Colloman 2004 which is a qualitative in nature basically they run to focus group focus group and team at the analysis to identify the outcome in the earlier study 2003 with 40% of the dropout rate Basically, they will know much different between treatment and control group apart from the The treatment group has in shown improving their lean body weight But when I look into detail they say that they're not actually increase in their lean body mass weight basically your your muscle mass versus your fat T-Shield level But is they maintain it by the control group, which is the the group that didn't do any home-based exercise They drop significantly versus the home-based exercise group And in the second study the quality study All the power disciplines in the treatment group they believe that exercise is positive and They're benefited from exercise in terms of improve their mood that is some of the in very reported that they have reduced the use of their anti-depressant and They're also improving their fatigue level keeping their body in shape Some of them tell us that that if they know That can attend some benefit from exercise they should start the exercise earlier and still when they're invited to join this Cancer study This research study In this in 2008 for four fifteen weeks of Home-based exercise program for power discipline underwent chemotherapy only or 30 weeks for people underwent stem cell transplant It didn't show any different of six minute walk test, which is the aerobic capacity assessment But they had shown improving numbers of red blood cells and platelet transfusion Attempts and days of stem cell collection However, there's Outcomes became statistically Significant versus the control group was only after the eliminated the power discipline who didn't respond to appointing L4 Supplement This clearly suggests of the selection bias in data analysis. So I'm not too convinced by the outcome Lastly we say about the primary treatment in Myeloma patient usually is high dose chemotherapy, which can cause unresolved factor This is shown by the latest study by Coleman 2012 that There is no any Improvement in any of the outcome measure for a study in less than four months But both control and treatment showed that they became more and more factor Slipless net at night and they also getting more decondition and some of them became function and decline so from these four home-based study without regular Face-to-face contact but one of assessment and then go home do your home exercise program Doesn't seems really work. So what we suggest in our literature is The S home-based exercise program during my love brother if Face should provide with some some level of face-to-face supervision and to be regularly contact it can be an Individual one-to-one session to assess their needs or can be a group session if their needs is not to Specific or have to be treated one-to-one We should progress the exercise component or sometimes we have to step back a little bit when their condition is not It's not that idea. Oh, sometimes they get further functional decline during the treatment phase So one of the latest home exercise program Gen D 17 last year in prostate cancer such as their cell efficacy In power dissipant who only participated in home-based exercise program actually became negative at three at third month because of lack of face-to-face contact and Lastly we suggest that the exercise training should be ongoing right after you complete the treatment Milo operative treatment and this home-based exercise program Show that that might not be sufficient in their duration and intensity Oh, they might have premature complete of their exercise program while the participants do have their needs to be met second phase we're going to discuss will be exercise intervention during my love multiple my my remission phase mix exercise training program Apply both qualitative and quantitative data analysis selector 37 patient out from safety in stable maintenance maintenance phase Where the power dissipant will either off treatment or they were undergoing maintenance treatment to undergo this mixed exercise program during the first treatment They have to go to weekly one group section Leaked by a physiotherapist or choice of a home-based exercise and The exercise content is quite similar to your home-based exercise program which including aerobic stretching aerobic exercises and moderate intensity and resistant exercise including weight lifting Teraband exercises as well and in the second phase of the exercise program between 36 months that how to go into home-based exercise three times a week and They also come in to attend a group session once a week. This study actually run by University College of London and Eventually There were 28 out of 37 which was about 75 percent of the power Discipline complete this six months study mainly due to logistic issue, which is the most common problem family or work commitment as well as Miloma disease progression that cannot tolerate this program animal and just for your information This majority of these participants had significant lytic bone disease at their long bone spinal bone collapse Underwent orthopedic surgery recently and they also require regular energy share Tidation, which is pancular so in this study They analyzed both participants who Completed and didn't completed the exercise program. It showed that participation in this mix exercise program had significant improve in their patient reported quality of life measure by functional assessment cancer type general version as well as the fatigue score and you can see that from This one would call my day, which means minimally important difference Score also improve Not all the majority of them also improve more than three The other outcome measure including up a link and low link strength had shown Significant improvement over time point they run the test to one way repeated ANOVA test However, there were no significant changes in ten of the or two max, which is the Arabic capacity as well as the factory link body mass Which is quite similar to the home exercise program Because they only compare among themselves not compared to the control group and this suggests that The even the maintenance treatment during the off-treatment phase multiple myeloma itself can be quite debilitating These mix exercise program might not be sufficient in their intensity Lastly, we're going to talk about the quantitative analysis From this mix exercise program So the first thing they identified was fear associated with risk of born Fracture and the power discipline Described that the multiple myeloma itself is very frightening and That will warn of the risk of born fracture So they will not share how should they do their exercise and they become over protective and over defensive to to do their activity daily living or Any sports exercise, which is not out of expectation and secondly the power discipline report that by the major That they feel that the increase in their confidence mainly improve to chew the group to group contact with the health care professional as well as Contact with the other myeloma survivor and patient advocate That actually improve their confidence in other area of their life and that that to explore other activities outside of home and most importantly they feel that This exercise program gives them hope and they have changed their perception of the future So it's quite good Quite a positive outcome Right now let's set Research study aside. Let's see in real life. How much does a multivator myeloma survivor that do exercise? I break down life into into smaller segments and right now I'm in a really good segment and so during this segment. I have to really take advantage of this I've got to do what I can do and so that's what I'm doing right now focused on the climb and I'm going with 15 other individuals and we're going to climb Mount Kilimanjara My name is Bob Dickey and I was diagnosed with multiple myeloma in 2010 I Actually had no idea what multiple myeloma was except I knew it was it was really serious The initial chemo really didn't do anything my numbers. I was pretty advanced I was able to get into the city of hope and that's really where things started to turn in the right direction And they saw where I was at and they knew it was a time was of the essence and On July 4th of 2011. I had a stem cell transplant and it went really well It was very difficult Something I hope not to ever do again, but realize it could it could happen that the treatment and the difficulty of the treatment has Set me up and and given me an advantage on the training side of it because The the treatment really made me focus on these small segments just getting through just getting through getting to the next treatment Getting to the next day and during the stem stem cell transplant. It was really getting to the next 15 minutes I did Mount Whitney a year after my stem cell transplant. That was a great thing to do. It was very difficult This is the next big climb and on my training hikes. It's one more lap around the top Let's go to the bottom and go back up again one more time. I've done it twice today I think I can make it a third time is pushing yourself just a little bit harder each time I think that's what's going to allow me to make it to the top of Kilimanjara is because I Know I train harder than I would have if I hadn't had the experience and I enjoy the process of Pushing myself really hard. I think that the process is Probably more important than probably even that summit day the summit day Will be the validation of everything that that I've done But it's the process of getting there that I think is the most important Honestly, don't you think this man is much more active than anyone of us here whether they're healthy or not healthy So the last phase of exercise program we're going to talk about will be Pre-hap pre-hap validation, which is a trend nowadays in preventive Preventive rehabilitation so There were two study recruited Recruit a 2k study were recruited to look at the influence of a six month multi model High intensity training program almost same 41 years old female subject with a former sports background As a nature of niche field in pre-hap there is actually a lack of evidence to support on this topic Which is not out of expectation The value of these two case study was it applied Sensitive and uncommon clinical outcome measure in a longitudinal setting which I would say is is rather Relative in common in a physiotherapy field In this six month high intensity multi-moder training program was aimed to double up the power Strength endurance big flexibility actually do anything you can name about so it's more a Funds than the exercise program. We have seen just now and To develop these various physical Capacity one of the distinctive feature of this exercise program. It was frequent chance of the exercise To in order to develop seven capacity for example in order to develop power The these subjects have to underwent different jump weight lifting Resistant exercise or as well as their combination in a functional movement setting Following these six month exercise program these subjects had further trend without direct supervision But and monitoring of her outcome measure So you can see from these graph from Year 2000 to 2011 the IGG level has improved from 2.5 3 to 1 point at full and This one is bone marrow plasma cells lever has in had improved from 20 percent to 10 percent and Also the exercise performance including how scored hundred meter core Bench bench press they all has improved Another thing I will talk about here, which is not in this graph will be the cardiac Autonomic control which will measure to the heart rate variability. It has showed significant increase Compared to their baseline and this study also compare the outcome from the cardiac autonomic control By compare with six healthy H make subject. It also showed significant improvement So this study suggests that this case study after rain first Suggest that fitness training could be beneficial to survival sheet outcome in smothering multiple myeloma case However, further randomized control trial study is really required So let's go back to This literature review to see how is the effectiveness of exercise program We will say that majority of the study selected presented with some positive correlation between participate in exercise program it shows some improvement in various aspects including physiological psychological quality of life However, it is very hard to suggest a single type of exercise or exercise program for all Different stage of myeloma patient because there's quite lack of study Recruiter and the study recruiter will quite variety in their design the stage of multiple myeloma as well They are treatment selected and last thing will be Their methodology quality was quite variety as well But however, we will say that it is safe to exercise even in a vulnerable multiple multi common BDD case Finally will suggest an individualized assessment to establish a personalized exercise program Or just simply some advice tell you to each patient condition and their concurrent treatment need Because we sometimes not necessary about exercise that might have other needs for example to treat their neck pain back pain and extra in a high common BDD Cancer like multiple myeloma we have to consider some of the safety factor when designing a exercise program of providing Physical activity advice so in an acute enemy case We should avoid high intensity high speed exercises in a severe immunocompromised case We will suggest to avoid activity that might increase the risk of infection for Significant or sudden draw of the platelet cow to avoid high impact or contact spots or activity to prevent uncontrolled breathing For severe deconditioning and fatty case to try to plan something which is meaningful to them I'll just advise them to policy back in a light to moderate intensity exercise finally if If a person report to you that they present that with some of the side effect from The treatment do you allow them to take Brandy of rest in between of the day in between of the exercises Encourage them to maintain their hydration level encourage them to drink Do not policy back in vigorous exercise in enhancing physical activity level Behavioral chance intervention to promote positive effect of exercise shall be provided Firstly we talk about environment queue environment queue can be anything From regular syndrome monitoring cell management coaching decision support in their daily life and This is not necessary to be provided by health care professional But it can be anyone like friend family fellow male Loma patient support patient advocate, especially Support from the community service Go setting go setting in term of a long-term goal as simply as Walking your dog for half an hour going out for hiking going out for shopping do your grocery Going out for a family trip or even going back return to work To gradually build on the short-term goal in terms of physical activity level or True personal review of exercise performance. It can be facilitated to using various goals setting to Such as a smart goal to our goal attainment Attainment scale So in 21st century, how can we miss out the technology? So what we are talking here is we may use mobile technology such as just use your smartphone or gamification Including virtual reality game and this lady who is very active day is actually playing a key neck to Xbox Use we in a clinical setting actually all this is applying in the NHS health care system and it's very common in Singapore and Hong Kong and these Technology support could be a promising too for scalable support of therapeutic activities and Continuity of patient care outside of health care setting in the community or at home So lastly we're talking about cell monitoring or physical activity We can use petrometer or acetylometer by mobile technology. I'll just simply use the exercise lookbook like Christina use in her study So this cell monitoring strategy allow the Myeloma survivors select their daily training volume based on their physical Readiness as well as the affected labor to enhance the effectiveness to provide regular monitoring By family friend health care professional and patient advocate Following multi aspect of support myeloma survivors should be motivated with the drive of For from the drive of positive benefit of physical activity True happy formation in order to be self-efficacy and to be able to self-care future direction I would suggest a multi-disciplinary pre-hap service should be established by Physio Doctor patient advocate Anyone even psychology in addressing both physical activity and psychosocial component To prevent development of multiple myeloma. Oh just simply Prepared them to go into chemotherapy or stem cell transplant Which is actually this program is available in my current hospital Rosary County Hospital and some of the hospital in London We will really require more evidence from a methodology vigorous study a different phase of multiple myeloma in got to guide cost effective exercise program and Lastly we suggest try to maximize the use of technology to support long-term treatment My tech home message would be an explicit recommendation was Try to await in activity and be physically active as active as possible I mean that try to do something which is enjoyable and meaningful to yourself And also it can be meaningful to your family member or at your word and Try to get support from anyone Including and pay a to maintain yourself advocacy and we are very helpful anyway So and thank you So thank you very much very nice Session very much information. I think it's very important Yes, we are a little bit late, but I think we should take the chance and ask some questions because I think This is a really good chance to To ask her. She's a very professional Physiotherapist, so who has some questions? So you want to ask for the power point. Yeah, sure no problem So maybe I will does somebody have a question or I shall ask one So ma'am, I would like to ask if there are any specific Exercises that are not good for myeloma patients that they should like not do So We went to some part of it like the precaution of exercise So we will talk about we talk about like when their blood level is Altered when their side and symptom are acutely not well So we will suggest not to do bouticular exercise have to be Specific to their personality because we know that from this study to the focus group a lot They're quite frightened to move so Try not to give too much information to them But specifically asked about ask them some question. What is their current condition? What is their medical condition? What's your blood test? They're astray their CT scan in order to give them advice, but what I can say to you is What exercise to instill tell them what not to do, but suggest them what to do So we want the bottom-up strategy encourage them to move so At this point I would say some of the exercise which is very good for the stretching You know, a lot of them have a bone lytic lesion Problem so they tend to present up with some outer puncture like quite kind for today quite slouch and quite tight At particular part of their body such as their chest their low back So, you know, they are biomechanic are not very good. So we encourage them do a corrective stretching So the corrective stretching because they get tired quite quickly with such as you to be seen by Physiotherapies even osteopath kinesiologist To get some idea about what kind of a corrective exercise to do because I will say their Battery level their energy level is quite limited So maximize to use what they have to do the important targeted individualized exercise Some questions So I would ask one question So I think one main problem is the lack of motivation because it's actually a physiotherapy So would you share some experience from your daily life in the clinic? What do you do when you have a patient with Who was maybe has some fatigue who was depressed who doesn't want to move at all? who I see Depressed and people who do not want to do any exercise every day I would say a half of them do not want to get up from bar to do anything In an acute setting because they do not understand what are the benefit of the exercise So we work as a multidisciplinary team by a Files from a physiotherapy Excel is not sufficient. We need the doctor. We need the nurse We need anyone even the catering staff to tell our patient. It's important. You need to get up to move and We tends to make something more functional people do not like to Deprive from their ability to use toilet So we tend to set some simple goal like get out to the bed Try to sit on the chair and slowly We need to set the goal for how many meter is your toilet away from your chair So we give them like short-term goal and your long-term goal short-term goal We aim that you can go to use toilet long-term goal is you able to go home Let's say what to your kitchen make yourself a cup of tea and you manage to use a stair Do the stairs softly go up and down Gain back your independence in your daily life But for this is quite a deconditioning deconditioning case for Younger adult who need to go back to work. So we will do something slightly more advanced like said like test there. What are their muscular skeleton Impairments sometimes some of them do have some neurological impairment caused by the cold compression Valdipra compression Neurobiotic so we need to give them something more Tailor advice, but this is quite expensive and our waiting list in the National Healthcare System to see a visual edge is quite high quite long if you're out of Acute setting so that's why we want them to come back to the group exercise So we are Designing some of the group exercise But unfortunately because of the funding issue we have to take all sort of patient But we try to get everyone in hematology or people similar to Multiple sclerosis we categorize them together and do their group exercise together Thank you Any more questions if not Thank you very much for this really nice session I think now we have lunch break