Living Well with MDS. Overview. What are the biggest physical and emotional challenges you are facing

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1 Living Well with MDS Strategies for Optimizing Emotional and Physical Health Isabel Schuermeyer, MD Director, Psycho-Oncology Cleveland Clinic Paul Scribner, LISW Director, Patient Programs and Services AAMDS Foundation Overview What are your concerns and needs? What do we know about symptoms & quality of life for MDS patients? What works to reduce fatigue? What emotional coping strategies work? What about anxiety and depression? What resources are available? What are the biggest physical and emotional challenges you are facing right now? 1

2 Overview What are your concerns and needs? What do we know about symptoms & quality of life for MDS patients? What emotional coping strategies work? What about anxiety and depression? What works to reduce fatigue? What resources are available? What We Know About the Symptoms and Quality of Life of MDS Patients FATIGUE 89% Bruising/bleeding 55% Night sweats 43% Bone pain 39% Fever 28% Skin rash 25% Weight loss 25% Work disabled 25% Restricted social & physical activities Most Steensma et al. Leukemia Research, 2008, (N=359) Fatigue & QOL: MDS vs Normal Fatigue: On a score of 0 (no fatigue) - 10 (extreme) MDS average = 5.8 Normal average = 2.2 Fatigue and quality of life were not related to hemoglobin level or need for transfusions. MDS patients are less than half as active as normals. 2

3 Quality of Life in MDS On score of 0 (poor) 10 (excellent): MDS average = 5.1 Normal average = 7.7 Steensma et al. et Leukemia ResearchLeukemia Research, 2008, 691, QOL: Unhealthy Physical and Mental Days and Activity Limited Days (per month) QOL: Perception of Overall Health 3

4 Unhealthy Mental Days Number of Unhealthy Mental Days Average # Days/M Month US Population Low Risk MDS High Risk MDS Overview What are your concerns and needs? What do we know about symptoms & quality of life for MDS patients? What emotional coping strategies work? What about anxiety and depression? What works to reduce fatigue? What resources are available? Stress and Coping Most people with MDS are psychologically healthy before and during treatment. Stress is a normal response to difficulty, especially when potentially life threatening or life shortening illness has been diagnosed. Not a question of getting rid of stress/anxiety it s about learning how to manage or cope with stress. 4

5 The early days of diagnosis Shock "I didn't really feel bad Worry "What does the future hold? Confusion "What does MDS mean? Betrayal "How could my body have failed me?" After the diagnosis has sunk in Able to cope with things the way you used to Family members may have a harder time emotionally during this period But sometimes, feeling like you can't move on and feeling depressed What Causes Distress in MDS Patients? Uncertainty - Not knowing what the future will bring Thinking about things that could go wrong Family -Wondering about the emotional toll. Not having the same responsibilities. Role change/confusion Worry about long-term effects of treatment Changes in physical appearance - Not feeling as masculine or feminine Medical System - Dealing with the medical system & insurance Finances - How to support myself and my family. 5

6 What is coping? Finding ways to manage the stress you are having Moving forward in your life Being able to enjoy things that you used to Finding ways to deal with uncertainty What We Know About Coping Each person has their own coping strategies Not every coping strategy is going to work for every person Some coping strategies are healthier than others What has worked for you in the past, is likely to work now - so stick to what works and try to further strengthen the healthiest of your coping skills Less Healthy Coping What doesn t work well? Deny or avoid crisis All or none thinking Avoid information Repress negative emotion Remain isolated Remain passive Focus on what is lost without balancing with gains 6

7 Healthy Coping Taking one day at a time & focus on the real issues Realistic optimism Keeping a sense of balance Manage stress levels Accepting your feelings Using your support network and asking for help when you need to Working with your healthcare team What you can do! Identify what has meaning to you and your priorities List your worries and fears What do you control? What don't you control? Deal with feelings Be aware of feelings Accept what you don't control Share: support group, on-line, therapist, spouse or friend Make a plan: What can I do about what I'm afraid of? Get regular check ups (how often?) Protect yourself (sun, exercise & nutrition) Treat depression What coping strategies have worked for you? 7

8 When is it Depression? 2 weeks or longer of depressed mood or not enjoying things like you used to along with Sleep disturbance Decreased interests t Feelings of guilt Fatigue Impaired concentration Change in appetite Feeling slowed or speed up internally Thoughts of death or suicide When is it an Anxiety Disorder? Worrying more often than not or problems controlling your worries Muscle tension Inability to relax Fatigue Irritability Inability to concentrate Sleep disturbance Having physical symptoms of anxiety = panic attacks Changes & the New Normal As with any serious medical illness, being diagnosed with MDS will result in many changes to your life. Change in daily routine New medicines/treatments Spending much more time with health care providers Fear and anxiety Fatigue Depression What has changed for you? What is your New Normal? 8

9 Overview What are your concerns and needs? What do we know about symptoms & quality of life for MDS patients? What emotional coping strategies work? What about anxiety and depression? What works to reduce fatigue? What resources are available? What Causes Fatigue? Anemia Decreased physical activity Immune system? Brain? impact of chemotherapy? Cytokines? Hormones? Sleep problems? Depression/Anxiety?? What Helps? Fixing the problems like anemia, low thyroid, etc. Exercise (most studies in transplant and cancer patients) Accepting that your normal has changed Understanding your daily fatigue pattern and planning around it (energy conservation) Plan around transfusion schedule Exercise early in the day if you crash and burn in afternoon Pacing activities vs paying for them later (sleeping to catch up on energy) Modify activities so you can still do those that you enjoy 9

10 What Helps? (cont d) Stimulant medicines Deal with contributing problems: pain, sleep, depression, anxiety Avoiding alcohol, heavy meals, boring meetings, etc Having an exit plan or backup plan What has worked for you? Why Exercise? Reduces fatigue Stress management Improved muscle tone Weight management Quicker recovery from surgery or medical procedures Feeling of control Evidence of Positive Impact of Exercise in Cancer Patients Many studies of exercise to improve quality of life and reduce fatigue in cancer patients One large meta-analysis 18 studies including breast, prostate and other cancers all during active treatment All patients that exercised had a reduction in fatigue, if they did the exercise In the studies % of patients did the exercise as was recommended Velthuis MJ, et al. Clinical Oncology

11 Important Considerations Talk with your physician before you start any exercise program Start slow and keep your expectations low walking programs tend to be the easiest start with only 5 minutes a day best to do small amounts of exercise every day incrementally increase the amount on a weekly basis, if you tolerate it What kind of exercise? Aerobic/cardiac activity Walking, running, yard work, swimming Strength training Resistance bands or machines, weights Mind-body Yoga, Tai-Chi, Pilates Stretching But Be Careful Generally Not Good to Exercise if... High dose IV chemo the day prior Platelet count below 50,000 White blood count below 3,000 Absolute granuloycte count below 2,500 Chest pain, pressure or rapid heart beat 11

12 Nutrition Try small meals and snacks all day. When you are hungry, eat more than usual. Keep ready-to-eat snacks handy to nibble on during the day. If you are not interested in eating, try a liquid or powdered meal replacement product for extra calories and protein. Hydrate! Cancer treatments can weaken your body s immune system - you may be told to avoid some foods Sleep Really important to have good sleep to maintain energy level! Insomnia (sleeping too little) Hypersomnia (sleeping too much) Have a set sleep schedule -go to bed each night at the same time & get up in the morning at the same time -if you are not asleep within 30 minutes, get out of bed until you feel tired Overview What are your concerns and needs? What do we know about symptoms & quality of life for MDS patients? What emotional coping strategies work? What about anxiety and depression? What works to reduce fatigue? What resources are available? 12

13 Resources That Can Help AA&MDSIF Website and Online Learning Center View presentations on medical and living well topics by experts at AA&MDSIF Publications Living Well with Bone Marrow Failure Diseases Your Guide to Understanding MDS Local Resources? 13