The impact of cancer extends beyond the merely physical. While treatment targets cancer specifically in the body, the experience doesn’t leave the mind, spirit or emotions untouched. The toll it takes has been likened to a natural disaster or trauma. In fact, recent studies have put forward the theory that surviving cancer fits the framework of Post Traumatic Stress Disorder (PTSD).  The term PTSD is commonly used to describe a range of symptoms an individual may develop in response to experiencing a traumatic event, in which bodily harm was experienced or threatened.
Most people associate PTSD with war veterans and victims of violent crime, but any life experience in which our safety and mortality are threatened can trigger PTSD. The physical and mental shock of having a life-threatening disease is a traumatic event for many cancer patients. The experience of trying to get back to normal after cancer treatment ends mirrors that of returning combat soldiers. The immediate crisis is over but our sense of security is shattered, leaving us feeling unsettled and vulnerable.
And what of those for whom treatment doesn’t end? Metastatic breast cancer patient, Abigail Johnston points out that “for men and women enduring the trauma of cancer treatment, the trauma is never over… reminders exist everywhere, ready to pop out when least expected to wreak havoc.” 
Could You Have Cancer-Related PTSD?
The symptoms of PTSD are similar to those of other states such as depression and anxiety, but one of the main signs that distinguishes PTSD is re-experiencing the traumatic event, often in the form of recurrent dreams or intrusive thoughts. These may consist of persistent memories of taste, smell, touch, and sound (for example you may still be able to “taste” the metallic taste of chemotherapy when you think about the event).
A number of risk factors may make you more vulnerable to PTSD. Your life experiences, including the amount and severity of trauma you’ve gone through since early childhood; having a high level of stress or other mental health problems, such as anxiety or depression; lacking a good support system of family and friends; and the way you deal with stress are all contributing factors. On the other hand, certain factors, such as increased social support, accurate information and supportive medical staff may lower the risk of developing PTSD.
Signs andSymptoms of PTSD
Symptoms of PTSD can arise suddenly, gradually, or come and go over time. Sometimes symptoms appear seemingly out of the blue. At other times, they are triggered by something like the anniversary of your diagnosis or surgery, follow-up scans, or a certain image, sound or smell.
There is no right or wrong way to think, feel, or respond to cancer, but it’s important to know which symptoms and signs to look out for, so you can put strategies in place to deal with it. People react in different ways to traumatic events and you may experience some or all of the following reactions to a greater or lesser degree.
Re-living the traumatic event: Intense memories of the time around your diagnosis, flashbacks or nightmares, especially if accompanied by symptoms like racing heartbeat, shortness of breath, sweating, nausea, or uncontrollable shaking.
Increased arousal: Feeling hyper-alert ( the “fight” and “flight” reaction is always on even though there is no present danger at hand), on edge, irritable, easily startled or angered; mood swings, difficulty sleeping or concentrating.
Avoidance: Staying away from places that remind you of the traumatic time (for example, avoidance of follow-up appointments).
8 Key Strategies and Tips for Recovery
1. Acknowledge and accept your feelings
Don’t deny or ignore how you are feeling. Accepting your feelings is part of the healing process. Allow yourself to feel what you feel without judgment or guilt. Remember, there is no right or wrong way to think, feel, or respond to cancer. Be compassionate to yourself and patient with the pace of recovery. Talk through your fears with someone you trust. Try journaling, art or other creative outlets to help you work through your feelings.
2. Avoid obsessive thinking
While it’s important not to ignore your feelings, obsessively dwelling on them will slow the healing process down. One tip is to designate one or two 10-minute periods each day, time in which you can fully focus on your feelings. When intrusive thoughts come into your head during the day, write them down and “postpone” them to the period you’ve designated.
3. Reduce your stress
Make relaxation a part of your regular routine. Learn to meditate, practice yoga, take a walk in nature or do whatever it is that helps you relax and unwind. Relaxation is not a luxury – it is a necessary step in your recovery.
4. Take regular exercise
Regular exercise boosts serotonin, endorphins, and other feel-good brain chemicals. It’s one of the simplest and most effective ways to reduce stress and anxiety, helping you feel grounded in times of emotional stress.
5. Eat a healthy diet
A healthy body increases your ability to cope with stress from a trauma. Foods rich in certain omega-3 fats—such as salmon, walnuts, soybeans, and flaxseeds—can give your mood a boost. Avoid caffeine, alcohol and nicotine, which can worsen symptoms.
6. Get plenty of sleep
Poor sleep can make your trauma symptoms worse. Go to sleep and get up at the same time each day and aim for 7 to 9 hours of sleep each night.
7. Pay attention to triggers
Anniversaries of your surgery, diagnosis and other cancer-related milestones can reawaken memories and feelings. Plan ahead for those times.
8. Connect with others
Following a trauma, you may want to withdraw from others, but isolation makes things worse. Research shows that support from others is an important part of your healing journey. Look to cancer support groups in your area or search online for groups. Talking to a psycho-oncologist or counsellor can also help.
When to Seek Help
It’s normal to feel anxious and unsettled after a traumatic event such as cancer. A diagnosis of cancer is distressing, the treatments and side effects are stressful, and the fear of recurrence is frightening. Most people find the intensity of their feelings will ease in a relatively short period of time, but for some the feelings will stick around or increase in intensity.
If painful thoughts and intrusive memories last longer than a month, and begin to cause problems in your personal relationships, employment, or other important areas of daily life, it’s important to seek a professional diagnosis of PTSD. The sooner PTSD is tackled, the easier it is to overcome. Unfortunately, many patients are not referred to psycho-oncology services to be assessed and treated, as high levels of sadness and anxiety are often perceived as ‘normal’ reactions to cancer diagnosis and treatment, so it may be up to you to advocate for your own assessment.
Types of treatment can include cognitive-behavioral therapy (adapting negative ways of thinking into more positive ones to help “re-frame” the traumatic experience); exposure therapy (to help you safely face the thing that you find frightening); medication (antidepressants/anti-anxiety drugs); and psychotherapy. When looking for a therapist, seek out mental health professionals who specialize in the treatment of trauma and PTSD.
You may also want to consider a form of treatment called EMDR (Eye Movement Desensitization and Reprocessing), which incorporates elements of cognitive-behavioral and exposure therapy with rhythmic eye movements designed to stimulate the information-processing system in the brain. The aim of the treatment is to help you process the traumatic events, and speed up recovery.
A trauma like cancer shatters our sense of security, making us feel powerless and vulnerable. Taking positive action towards recovery directly challenges this sense of helplessness and helps us regain a sense of control. It can take time to get over the trauma and feel safe again. But by seeking treatment, reaching out for support, and developing new coping skills you can heal and move on with your life.
 The Diagnostic and Statistical Manual of Mental Disorders introduced malignant disease in its definition of PTSD in 1994.
 The National Cancer Institute estimates that approximately 35% of patients experiencing cancer may suffer symptoms of PTSD.
 Leano, A., Korman, M. B., Goldberg, L., & Ellis, J. (2019). Are we missing PTSD in our patients with cancer? Part I. Canadian oncology nursing journal = Revue canadienne de nursing oncologique, 29(2), 141–146.
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/Marie-Ennis-OConnor-1.png600600Marie Ennis-O'Connorhttps://www.powerfulpatients.org/pen/wp-content/uploads/New-Logo-300x126.pngMarie Ennis-O'Connor2020-01-24 10:23:102020-01-24 10:23:10Cancer Trauma: How To Know If You’re At Risk and Key Strategies for Recovery
Battling cancer is, undoubtedly, tough. On any given day, you might find yourself feeling so sick that you can’t even get out of bed. Being relegated to bed and struggling to even fall asleep can feel utterly disheartening. Adopting some healthy habits in your sleep routine can help to ease your body and mind into sleep more quickly and easily, letting you get some much needed rest and recharge.
Why Does Cancer Alter Your Sleep?
There are a lot of side-effects that you might experience as a result of your cancer treatment. Though one of the most common side-effects is fatigue, many patients also find that they have difficulty sleeping, which only exacerbates their feeling of fatigue and sleep-deprivation. These sleeping problems can be the result of many factors such as newly developed sleep disorders, physical triggers, and psychological triggers.
It is incredibly common for cancer patients to experience insomnia, which refers to any number of factors that make it difficult for someone to fall asleep and/or stay asleep. People with a serious illness are at an increased risk for insomnia. In fact, while about 20% to 30% of the healthy population suffers insomnia, over half of all cancer patients have reported facing periods of insomnia.
To be clear, insomnia is not caused by cancer, but it is a precipitating issue that results from the physical and emotional stress that often accompanies a cancer diagnosis.
Other sleep disorders may also manifest, such as sleep apnea, hypersomnia, circadian rhythm disorders, parasomnia, and restless leg syndrome. All of these make it difficult for sufferers to fall asleep and sleep soundly through the night, therefore deteriorating sleep quality and causing daytime fatigue and exhaustion.
Cancer can cause a great deal of pain and discomfort, which makes it understandably difficult to fall asleep as well. Tumors and treatments alike may result in troublesome pressure in isolated spots on the body or all throughout, as well as gastrointestinal issues, breathing problems, fevers and itching, to name just a few physical symptoms. When your body is uncomfortable, it is incredibly difficult to relax and lull yourself into restful sleep.
Additionally, cancer comes with its fair share of life changes and psychological stressors. Fear and anxiety related to your diagnosis and prognosis alone can be enough to keep you up at night.
Following your diagnosis, you might also experience career, relationship, and body image changes which cause additional stress. We understand that cancer can be a distressing experience, and many patients are at an increased risk for anxiety and depression.
If you are experiencing any troublesome side-effects, whether they are related to your sleep pattern, your physical well-being, or your mental health, it is important to consult your oncologist and other medical professionals for their advice and assistance in easing your symptoms.
How Having A Routine Makes It Easier To Fall Asleep And Sleep Well
For the sake of your health and quality of life, sleep is perhaps the most important thing you can do for yourself. A good night’s sleep can increase productivity, improve mood, and expedite the body’s natural healing processes. This is a vital part of everyone’s life, not just those who are battling illness—still, up to half of all Americans report not getting enough high-quality sleep each night.
If you are kept up by physical pain or emotional stress, implementing a bedtime routine that works to calm your mind and body in preparation for sleep might be the change that you need. Your routine does not have to be overly complicated, especially if you don’t have a whole lot of time or energy in the evening, but a few moments of intentionality before bed can work wonders for your sleep quality and relieve daytime fatigue and sleepiness.
1) Take A Bath
We all like to be warm and cozy in bed at night (hello, fuzzy blankets!) but it is actually really important for your core body temperature to be fairly cool in order to induce sleep effectively. Our bodies follow circadian rhythms which dictate when to sleep and when to wake up. At night, your body naturally cools down and begins to release melatonin and other sleep hormones. Taking a bath or warm shower before bed can have several positive benefits to your sleep, not the least of which being a reduction in your core body temperature.
It may seem counterintuitive that soaking in hot water helps to cool you down, but when you get out of the tub the water begins to evaporate from your skin, cooling your core and cuing your circadian rhythm to do its thing. Baths also improve circulation, ease aches and pains, and help you relax and disconnect before bed.
If you decide to implement a bath or shower into your bedtime routine, go ahead and make it a real treat for yourself. Even just fifteen minutes of uninterrupted relaxation time can have major benefits. Light a calming candle or turn on soothing music, allow yourself to let go of any stressful thoughts or to dos and just breathe. We recommend bathing about one to two hours before bed so that your body has enough time to fully cool down and reap all the cleansing rewards of your pre-slumber soak.
Practicing some simple yoga stretches before bed can also help sooth your mind and body before bed. In fact, exercising regularly has been seen to have major benefits on sleep quality. Even if you are someone who abhors spending time in the gym or for whom running is a form of torture, you can get in touch with your body and improve your sleep with just a few gentle stretches or a basic yoga practice before bed.
Getting your body moving releases endorphins and enhances mental clarity. If you plan on participating in a workout where you break a bit more of a sweat, we recommend scheduling that earlier in the day so your body isn’t too warm or wired before bed. Stretching and breathing exercises, however, have the same positive benefits and can be done right before bed as they help to relax your mind and body.
Not only does yoga loosen up your muscles and help to relieve pain, it also encourages mindfulness and developing a trust in one’s own body. After a cancer diagnosis, it can be difficult to have faith in your body’s ability to keep you healthy. When you practice yoga, however, the process allows you to see your strength and flexibility improve over time. You will be amazed by what your body is able to do!
Getting in touch with your mind and body through a yoga practice or stretching routine has also been seen to have positive spiritual benefits for practitioners. No matter what your spiritual discipline is, taking time out of your day to clear your mind and ground your body can be enlightening and spiritually encouraging. Use the time that you are stretching to engage in prayer, meditation, or simply focus on controlling your breathing.
3) Keep A Journal
Do you find that as soon as your head hits your pillow it begins swirling with all of your unfinished tasks and worries? You are not alone! Writing in a journal each night before bed can help to ease your mind and stave off stress and anxiety that commonly keeps you up at night.
What you decide to write is up to you. You can jot down a recount of what you did throughout the day, or make a plan for what you intend on doing the following day. Perhaps you have a mantra of aspiration phrase that encourages you? Try writing this down each night or compose a list of things that you are grateful for or proud of from each day. If you are struggling with day time fatigue, using your journal as a place to record your daily fatigue level (on a scale of 1-10) and the activities that you participated in throughout the day can be useful for figuring out your fatigue triggers and working to manage your energy efficiently.
Ultimately, having a place to clear your head and process your thoughts is a great addition to any bedtime routine. It does not have to take a whole lot of time, nor does it have to follow any sort of structure. This journal should be for you and you alone, so don’t overthink it, just get to jotting (and then get to snoozing!)
Ultimately, changing your routine can create a sense of regularity and control, helping to ease your mind and body into sleep. Routine changes, however, are no substitute for medical care and a strong support system. So, if you are having trouble sleeping, do not hesitate to mention it to your doctor as this might be a symptom of a larger problem.
Melissa Bondy is a content writer and bedding buff for The Slumber Yard. She is part of a team dedicated to bringing honest mattress reviews and helpful sleep tips to consumers. In her free time, Melissa enjoys studying poetry, kayaking on Lake Tahoe, drinking coffee, and training her puppy.
https://powerfulpatients.org/pen/wp-content/uploads/Three-Night-Time-Activities-To-Help-Cancer-Patients-Fall-Asleep-Quickly.png600600Melissa Bondyhttps://www.powerfulpatients.org/pen/wp-content/uploads/New-Logo-300x126.pngMelissa Bondy2019-12-16 13:38:582019-12-16 13:38:58Three Night Time Activities To Help Cancer Patients Fall Asleep Quickly
Are you “battling” cancer? Do you know someone who has “lost their fight” with the disease and died?
It seems whenever we hear a story about someone with cancer, war metaphors are never far behind. Cancer battles must invariably be bravely fought, won, or lost. Using this metaphor implies that if a patient fights hard enough and/or long enough, he or she will be able to “win the war.” The trouble with using this particular kind of metaphor to describe cancer is it puts the burden of healing on patients by turning them into winners and losers. As breast cancer blogger, Nancy Stordahl, writes in What Does Beating Cancer Mean Anyway? ”Struggling to live up to some gold standard of what beating cancer means, adds to the already exhausting burden. We need to stop patronizing and judging cancer patients based on misguided battle talk analogies. Cancer isn’t an opponent in some war game you can stomp out by mindset or determination.”
Besides, the battle metaphor takes no account of the sheer randomness of the disease. Using a statistical model that measures the proportion of cancer risk, across many tissue types, scientists from the Johns Hopkins Kimmel Cancer Center published a study in 2015 which concluded that two-thirds of the variation in adult cancer risk across tissues can be explained primarily by “bad luck.” In other words, a major contributing factor to cancer is in fact beyond anyone’s control. For the most part, we don’t know why one person is alive 10 years after the diagnosis of advanced cancer, whereas another dies within months.
By this reasoning, no amount of fighting or battling cancer can affect its outcome. Commenting on the study, the researchers said, “Many people have found relief in this research. Cancer has a long history of stigmatization. Patients and family members frequently blame themselves, believing there was something they could have done to prevent their or their family member’s cancer. We have heard from many of these families and are pleased that our analysis could bring comfort and even lift the burden of guilt in those who have suffered the physical and emotional consequences of cancer.”
Cancer is a disease; not a military campaign
Cancer is a disease; not a military campaign. In the words of patient and caregiver Jana Buhlman, “it’s a disease that people manage.” Cancer is a complex disease. Yet there still exists a prevailing attitude to cancer which treats survival as though it were somehow an act of will. You’ve got to be strong, remain positive and be courageous to overcome the disease. Clodagh Loughrey, who was diagnosed with breast cancer nine years ago, explains, “I was absolutely petrified at the time, the opposite of strong or courageous, and to be also made to feel guilty for being scared by well-meaning exhortations to be ‘be positive’….people mean well and I didn’t want to sound ungrateful for the support as it is far worse (and easier for them) to avoid people with cancer, and some people did.”
What other diseases or condition do we say this about? “Do we fight a heart attack or a stroke? Are we told in any other illness to “keep fighting”? asks Jo Taylor, Founder of After Breast Cancer Diagnosis. The fact is cancer doesn’t care how courageous or positive you are. Patients are in remission because treatment eliminated every cancer cell from their bodies, not because the patient fought courageously or was endlessly positive. As a patient who is currently NED (i.e. no evidence of disease) I didn’t fight any harder than anyone else with this disease. I haven’t “beaten” cancer. I don’t know for sure that cancer will not come back again.
Cancer isn’t a game of winners and losers
I’ve lost count of the number of times I’ve read about patients who are in remission from cancer, having “won their fight” against the disease. Journalists in particular seem incapable of writing about a person who has died from cancer without resorting to the “lost fight” cliché. Julia Barnickle, who is living with metastatic breast cancer, points out that while she doesn’t like the term personally, “I have no problem with cancer patients using fighting talk. However, I do object to the media using it, especially in the situation where someone is said to have “lost their battle with cancer.” It’s simply a hackneyed way of grabbing attention.”
Does this imply that patients in remission have somehow done more than those who aren’t in remission? Or that cancer progression or death from cancer is somehow an indication of failure – of not having had the ability to fight and defeat the enemy? “It seems,” in the words of breast cancer blogger Maureen Kenny, “if you’ve got cancer you’re almost always seen as battling or fighting it, more often than not bravely. We never hear of anyone dying of the disease after a lacklustre, take or it or leave it, weak-willed tussle.”
Cancer shouldn’t be reduced in this way to a game of winners and losers. Commenting at the time of the death of film critic Roger Ebert, Michael Wosnick, wrote: “The use of the word, “lose” is like a zero-sum game to me: if someone or something loses then that means that someone or something else wins. You can’t have a loser if you don’t have a winner. We should not so easily give cancer that kind of power over us.”
If someone has lifelong hypertension and dies from a heart attack, do we say in the obituary that they lost their battle with high blood pressure? Then why do so many deaths from cancer get reported this way? While it’s not quite “blaming the victim”, it does have an implicit element of somehow placing the ultimate responsibility for having died in the hands of the deceased.
When words blame
Oncologist, Dr Don Dizon, tells a story about taking care of a young patient with ovarian cancer during his first year as an attending physician at Memorial Sloan Kettering Cancer Center. The patient had just relapsed from first-line treatment and in his discussion with her about the next steps, Dr. Dizon explains that, “despite the failure of first-line treatment, there are many more options for you.”
The doctor was stunned by the patient’s tearful reaction to his words: “You make it sound like this was my fault, like I did something wrong!” she said. “I’m sorry I failed chemotherapy, if that’s what you think, and I’m sorry I disappointed you.”
It’s a lesson Dr. Dizon has never forgotten, as he describes in his own words: “It was never my intention to place ‘blame’ on something so devastating as a cancer recurrence, and I certainly did not mean to imply that she had failed. These many years later, I still consider this encounter a watershed moment in my career as an oncologist.”
The “battle with cancer” may be “only a metaphor” but it stands for a quite destructive attitude that, to the extent it influences doctors as well, distorts the treatment of cancer too. In a JAMA Oncology article, the authors discuss how “the continuous urge to win the battle extends to oncologists, who actively treat patients for too long. The fact is that 8% of patients receive chemotherapy within 2 weeks of dying of cancer, and 62% within 2 months. Late chemotherapy is associated with decreased use of hospice, greater use of emergency interventions (including resuscitation), and increased risk of dying in an intensive care unit vs at home. This all clearly reflects our society’s need to battle until the end.”
Embracing a fighting spirit can work for some patients
This isn’t to deny that some cancer patients embrace a fighting spirit as a way that helps them feel more in control. Cancer survivor, nurse and educator, Beth Thompson describes how “identifying as a shorn ‘warrior’ psyched me up for and pushed me through treatment.” Sara Turle, a 9-year survivor of cancer, also found resonance in the metaphor. “For me I was never battling cancer: it’s a disease, but I was definitely battling how I managed diagnosis and particularly getting through the side effects of treatments,” she explains. “It helped me to look at each stage and at times each day and even hour, at worst points, with a view of getting through, surviving and celebrating with just a simple acknowledgement. It truly helped me feeling that achievement and it helped with knowing that I was going to have to face it again.”
Professor Elena Semino and her colleagues have been studying the use of metaphors in the way we talk about cancer since 2012. As part of their research they have analysed 1.5 million words taken from interviews and online forum discussions involving cancer patients, family carers and health professionals. The team found that the type of metaphors people chose to use when describing their cancer reflected and affected how they viewed and experienced their illness. “For some patients, some of the time, the idea of being engaged in a fight is motivating,” explained Sermino. “Some people say with pride that “I’m such a fighter”, and they find a sense of meaning and purpose and identity in that. The study showed that we are all different, and different metaphors work for different people, and at different times.”
I agree. I’m not criticizing individuals who draw strength from calling themselves fighters. Everyone is entitled to use whatever language they want to describe their own experiences. As Sara says, “My belief is that the right language is what is right for the individual person and I would hate to think that people who do find this language helps, feel that they can’t openly use for fear of what others may think. Whatever language gets you through is the right language for me. I am very mindful of when speaking to people now to be sensitive to the language they are happy with and these discussions of differing views have helped me with this.” Beth agrees and asks, “Can we educate while still leaving room for what works for the individual experience of cancer?”
If you believe, as many patients do, that the words we use to describe cancer matter, how then should we begin to conceptualize it? Stephanie Sliekers asks a similar question in this HuffPost article, “If cancer really is the ‘enemy’, what’s the best way to beat it?” Her answer? “By studying and understanding it as it is, a disease borne out of human blood, tissues and genes, a disease that lives within us whether it is treatable or fatal.”
Perhaps, rather than speaking of cancer in militaristic terms, it’s better to communicate that we are “living with cancer” for as long and as well as we can. And when a person dies, let’s not say he/she has lost anything, but rather that person has died after living with cancer for a period of time.
Words matter a great deal in life, death, and everything that comes in-between. To quote Dr Dizon “Words are powerful and despite our best intentions, can hurt—this is true in life, and it is true in oncology.”
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/Words-Matter.png600600Marie Ennis-O'Connorhttps://www.powerfulpatients.org/pen/wp-content/uploads/New-Logo-300x126.pngMarie Ennis-O'Connor2019-04-24 16:23:262020-06-23 08:38:26Words Matter: Why Cancer Isn’t a Game of Winners or Losers
A group of CLL patients and a care partner discuss living with CLL and how to manage its symptoms and side effects.
For more CLL Patient Cafe® and other programs, please visit here.
Hello, and welcome to this Patient Empowerment Network program. I’m Andrew Schorr, with Patient Power, and I want to thank you for joining us for another one of our CLL patient programs, and today, we’re gonna go from the United Kingdom, England, all the way to California with a group of people as we discuss living with CLL, dealing with symptoms and side effects. Emotional issues, how we communicate with our healthcare teams. I’ve been living with CLL about 23 years now, and also joining me here in California is Esther Schorr, care partner of course. Esther, thank you for being with us.
And along the way we’re going to include, obviously, the role of someone who advocates for you, and urge you to have someone to do that. Let’s go all the way over to England. We have Adrian Warnock with us. Adrian, you’ve been living with CLL how long?
Well, next month or so it’ll be two years, actually.
Wow, okay, and you’re a physician by training, so when all this medical stuff comes up, you’re evaluating it based on your training probably as well, although I know you haven’t been a CLL specialist.
Yes, that makes it quite an interesting thing, because when you look at the terminology, you have clinical trials. I’ve actually helped them run a lot of clinical trials, but not in hematology, in a completely different disease area. So, there’s some things that are very sort of familiar, and other things are less so.
Right. And we should mention that you’ve had a number of hospitalizations. You’ve had Treatment with FCR, fludarabine, cyclophosphamide, Rituximab, or Rituxan, that many people have had. I’ve had that, too. And right now, you’re doing okay.
Yeah, I hope so. I mean, it’s early days yet. My last FCR was just a couple of weeks ago. But what I would say is my lymphocyte count is less than one at the moment, so if that continues to be the case, then hopefully we’ll conclude it was a good outcome.
Okay, well we’ll talk more about your journey. Let’s go over to New York. There’s Jay Blatt.
And Jay, you were diagnosed when?
January of 2016.
Okay, and what led to that diagnosis?
What led to the diagnosis was seven years of my platelets diminishing consistently, and also having two bouts of a bronchitis that I couldn’t shake, and then finally, in November of 2015, while fishing on a jetty in the middle of nowhere, I bent down and a blood clot developed in my thing. And at that point, as thick as I am, I knew something was wrong.
Okay, and you’ve had no formal treatment, but you’ve been on a special diet that you believe has helped you.
Yes, but not exactly. I’ve been on a macrobiotic protocol that includes diet, nurturing the food a certain way, and exercise, and I develop my own type of CLL wellness program, using macrobiotics as a foundation. And it’s a very blood-centric dynamic, where I believe all good health comes from having healthy blood.
Okay, well, we all want to know what we can do ourselves, and that’s gonna vary by person. I’ll talk about mine as well. And joining us from Southern California, someone who goes to the same clinic at University of California, San Diego, that I do, is Maggie Buckenmayor. Maggie, you are still in the watch and wait phase. When were you diagnosed?
I was diagnosed on November first, 2018, and my diagnosis happened from just a routine annual blood check. And they noticed that my lymphocyte counts were high.
Okay, and when you were told, maybe even as an offhand remark, that it could be leukemia, that was a heavy blow for you, wasn’t it?
Oh, it was extremely tough. My husband and I were actually travelling, and I got a call from my intern, and she started to talk about my blood results, and said, “Oh, you have some strange blood results. It may just be an infection, or it may be, you may have cancer, and it may be leukemia,” just right there on the phone. And I’ve never felt better. I exercise a lot. I eat a healthy diet.
I’m just in a very, very positive place in my life, and that hit me like a ton of bricks, because I never ever imagined that I would have leukemia, and when you hear the leukemia word, it’s pretty tough. It was pretty tough for me to wrap my head around. So, I went into kind of a tailspin there for a while.
My understanding is you met up with your twin sister, and you were wondering whether you were gonna tell anybody, and then it just came out.
Yeah, and actually, it was during that trip, and I told my husband, “I’m not gonna tell anyone. This is just between you and me. Let’s do more tests, find out exactly what’s going on.” Because at that point, they didn’t know if it was leukemia or lymphoma or what was happening. And I saw my twin sister, who I’m extremely close to, and just one look at her, I burst out crying and I went running up to her and I said, I get upset still, but I said, “I’ve got blood cancer.”
And she just gave me the biggest hug and, luckily, she’s a therapist, and she was great. And I can’t thank enough my family and my support system. And today I’ve learned a lot more about the disease. I’m, like you said, at UCSD Moores Cancer Center. I have a fabulous doctor there. And a lot of that has been my anxiety and tension has really calmed down, and I feel like I’m on a great path. I feel healthy, I feel great, and when it comes to time that I need treatment, I’ve got a really good, positive headset now. But that first month was awfully really bad.
I understand. Now Adrian, you had not just issues with being told you had cancer, but you had hospitalizations that came with this, too.
Yeah, so what happened with me, actually, when I got phoned up as well, I mean, that’s interesting that you should have a phone call. I don’t think anyone should hear news like this over the phone. But I got a phone call, I was actually lying in a hospital bed, with pneumonia, basically unable to walk, unable to breathe, and my head wasn’t working properly, I couldn’t really think straight. And it was the doctor from the first hospital that I had gone to in A&E a couple of days before, saying, “Hey, I’ve looked at your blood under the microscope, and,” like with you, she said, “I’m pretty sure you’ve got leukemia. I need to see you urgently.”
And I said, “Well, I’m in hospital, actually.” So yeah, I was dealing a sort of quite nasty pneumonia that took weeks to get on top of, whilst dealing with a three-quarters diagnosis. And honestly, I don’t know if doctors ever watch these, but really, they should learn a lot better than to tell people over the phone. It’s not very fun.
Right, and you’ve had a number of hospitalizations, but you’re doing well now.
Yeah, that’s right. Unusually, I had surgery. I had two operations on my tonsils, which can happen with people with CLL, but perhaps it’s a bit atypical. Mine was trying to choke me to death. I was losing my airways at one point.
But since I’ve had the FCR, my lymphocyte count is way down now. It’s well below one. Obviously, it was only a couple of weeks ago that I had the last one. But I’m back in watch and wait and worry, really. I’m very aware that particularly that first three months after the FCR will probably help to indicate whether it’s taken or not.
And Jay, so you’ve managed your CLL with your diet and it’s worked for you. So, when you say macrobiotic diet, what does that mean?
Okay, well it means, just like doctors have a different philosophy and they’re still doctors, doing the same type of thing. Macrobiotics can mean a lot of different things, but my point of view is about lowering the impact of your CLL, because I’m doing this because of CLL, and being able to live as healthy a life as you can.
But macrobiotics is basically a way of eating, a way of preparing food. It’s a healthy diet. It’s an anti-inflammatory, plant-based diet, and some fish. And you can’t just do macrobiotics half way. You have to go for making it a lifestyle, and that’s what I do. So, I don’t eat meat, which I’m fine with other people eating meat, but for me, it’s my choice not to. I don’t eat poultry. I don’t eat dairy, and I try not to eat a lot of wheat. But the bottom line, blood cells have to be made somehow, and they’re made as a result of the way you eat and the way you exercise. Believe it or not, that impacts blood cells.
So, unless someone’s ready to study me personally, I’m just going on faith here, but 38 months into it, all my blood counts have also improved, and my white blood cells have remained not only stable, but they’ve actually gone down, so I’m very pleased.
Okay, so I wanna give credit to Esther Schorr, my wife of how many years now, Esther? 30?
It’s going on 34.
34 years. Esther and I have always exercised together, ran last night. Been living with CLL 23 years now, been treated twice: FCR, and then later with Obinutuzumab and high-dose steroid about a year, year and a half ago, and I feel really good. And our diet, again, Jay, we don’t know if that’s the thing, but now we’re really not eating red meat. We’re eating fish, chicken, not even a lot of that, fruit and vegetables.
As organic as possible.
Point is, nobody’s studied us, but we do feel good. And I think all of us want to say, what can we do for ourselves. I wanna ask Esther, though, what we do ourselves is part of it. But what about the role of a care partner, whether it’s a wife or best friend or adult children? What would you say to care partners?
Well, I just wanna back up for just a second and acknowledge what I just heard from all of you, and especially you, Maggie, because of the very high emotional impact. I just wanna acknowledge that for care partners with a loved one who’s diagnosed with something that feels and may well be very serious, the emotional impact can be as severe for your loved ones as it is for a patient in a different way.
Like, you feel helpless. I know that when Andrew was diagnosed, my feelings of, “Oh, my God, what can I do to help with this situation, because it’s purely a medical thing. I’m not a medical person. What’s the role of me as, I call myself a care partner.” And so, what I would say is over the years, what I’ve felt was the best way for me to support Andrew through a lot of ups and downs, it to be an advocate. Be a researcher and find ways for me to keep my head straight, when he happens to be a very practical kind of guy. But if he were somebody who was also very emotional, I think the role would be to be the voice of reason, the voice of practicality, looking at what dietary options there might be, what treatment options there might be.
Be actively involved in the discussions with the healthcare team, so that there are two sets of ears that are hearing the same thing. I’ve just felt like I’ve been the partner advocate for Andrew, and a pair of listening ears that’s digesting what’s being said, processing it, and giving him back, hopefully, an educated opinion about direction to go.
So, I don’t know if that answers your question, Andrew, but I think it’s a lot of advocacy, and being the person that’s gonna look at what are the more holistic supplementary things that can be done to support somebody who’s made a treatment decision. Let’s put it that way, because ultimately a patient has to decide. My body, my decision, with my doctor. But being a care partner is also about lending some sort of an educated perspective, and saying, “Here are some other things that we might consider doing together, or how I may be able to help you.
Maggie, do you draw on the family? You ended up telling them all. Do you draw on them for support?
I really do. My husband has been amazing. He’s kind of like my steady rock, and he goes to every doctor’s appointment with me. He transcribes everything that’s said in the doctor’s appointments. He researches with me on the internet, so that’s an amazing – My twin sister and her husband are both therapists and have helped walk me through that.
My children are very understanding. They were very frightened when I first told them, and I try to give them more and more information. I’ve given them the ling to your website. That’s helped them immensely. So, and then I’ve told a close group of friends, too, and they’re very supportive. Not many of them really understand the disease, but they’re very supportive. So, for me, it’s critical I have that support system.
Andrew, I was just going to add one other thing, that there isn’t always a family member that’s available. I just want to acknowledge that sometimes, somebody doesn’t have a partner, or a sister, or a father, or an adult child, but as a care partner, I would encourage anybody that’s dealing with this kind of thing, find somebody in your life, even if it’s a nurse, or it’s a counselor, or somebody that is going to take on that role for you, because it’s really important.
So true. Now, Adrian, you have five kids, right?
Yes, that’s right. The youngest is 12 and the oldest is 22, so that’s quite a range.
How have you gone through this? I mean, you probably have an active family life. You’ve had hospitalizations, you’re going through FCR. So, talk about treatment, family life, support –
It’s funny, our family life becomes a little bit different. I had to have a word with my 12-year-old, to make sure he understood that words like cancer and hospital are not so normal. But a lot of other families, and a lot of other kids, and so he could really freak out his friends, perhaps, by talking about, “Oh yeah, my dad’s got cancer and he’s in the hospital again.”
It becomes almost a bit of a matter of fact when you go into hospital so many times in a short period of time. Sometimes I have to say to my children, “I’m going off to get an infusion,” and they’re like, “Oh are you staying in hospital tonight?” I said, “No, no. The plan is for me to come home.” So yeah, it becomes part of family life, to a certain extent. Obviously very difficult at the beginning, and I think sometimes very difficult as it goes on and on.
Actually, in many ways, watch and wait was almost harder than when I was being treated, because at least they see that there’s a problem, and that the doctors are doing something about it. It can be quite hard, I think, for family life to continue when one member is really struggling to keep up. Like on the holidays, for example, I sit in the car while they’re all climbing a hill, and all of those kinds of things. It is tough, but I think people are resilient, and I would certainly say that the support from my family and friends has been amazing really.
But I would also say, I think for me personally, it’s been really important to get some support from outside the family as well, and actually professional support. So, for me, I certainly struggled a lot with adapting to the diagnosis, particularly during watch and wait, where you feel like you’re in a form of purgatory. Too sick to work, too sick to enjoy life, but not sick enough to need treatment. And so, that was hard to deal with, and I think my poor wife. You know, it’s important that I had another outlet to talk to about that.
Yeah, Esther and I did that as well. Jay, I want to ask you, so you, right now, are doing well, but you have – You live on Long Island, but you have a world-famous specialist in New York City that you check with. How do you think about the future, knowing that CLL can change or evolve? And so, diet exercise is working for you, but it may not always. No one knows.
I feel this way, we have to do some of the heavy lifting for our doctors, because they’re so well intentioned, and they can give us miracle drugs, but if we don’t do our part, the disease will just progress, I think, that much quicker. And if I ever needed, god forbid, to be treated, I would do it. And I think it has to be an integrated approach, using the best that modern medicine can offer, and I think we have to do our part. And I think too many people just kinda give up at the beginning. They say, “Uh-oh, this is cancer,” and they get paralyzed, like they’re caught in the headlights. So, I think CLL is a bully, and I do my best to bully it back, and I’ll keep doing it as long as I can.
I hope that I can get – I was hoping to get ten years of watch and wait, and so far it’s been a little bit less than four, and if I can do this forever, great, and if I can’t at least ill make my body so strong that, hopefully, when it comes time for treatment, Andrew, I’ll have enough strength to wind up surviving.
And Maggie, what about you? What if it gets to the point where your physician here in San Diego says, “You know, has changed, your white blood count is changing, you’re developing various symptoms. We can get lymph nodes and night sweats and things like that. And it’ll be time for treatment. Are you prepared for that?
I think mentally and emotionally, I’m fairly prepared for that. I’ve also tried to be as involved as I can in other – Leukemia Lymphoma Society, and the CLL Society, and listened to a lot of podcasts from CLL experts.
And I have such faith and hope in what’s happening in trials and current treatments, that I know that at some time – my prognostic factors are probably five years, and I’m doing everything I can, similar to Jay, and trying to stay healthy and eat a healthy diet. But when it comes to that point in time, I’ll raise my hand for a trial or go on the most current medication.
Now Adrian, you mentioned that you had severely inflamed tonsils, where you almost couldn’t breathe, and you said that’s kind of an atypical result of CLL. And you’re a physician, so I’d love your perspective on this. CLL can affect different people in different ways. What do you do as far as communication with your healthcare team, trying to sort out what’s related to the CLL and what isn’t? What’s related to the medication you’ve had and what isn’t?
It’s tough, isn’t it? Actually, in that instance, I was unable to sleep because every time I started to sleep, my tonsils did completely block and choke me, so I had a fair few days of not being able to sleep. But when I was admitted to hospital, losing my airway essentially, there was quite a bit of debate, because the EMT doctors looked at me, and they said, “Those tonsils don’t really look that inflamed. They don’t look that angry. We think this is not a sort of tonsillitis-type picture. This is not something typical. This must be more of a hematological problem. The guy’s got cancer, give him some chemo.”
The hematologist came and they looked at me and they said, “Well, the thing is, it’s only really the tonsils growing. The other lymph nodes, I don’t think we could even feel at that point, although they did grow later on, and his lymphocyte count is really low. Actually, they did say, “Could this be a transformation? It could be high-grade. So, there was a whole lot of debate between even those in that situation, about whether to operate
And obviously they did try some steroids for a few days, and c they didn’t shrink, they had no choice but to go in and operate, so that I could swallow again, and breathe again more easily. But that kind of thing has happened on other occasions, and when you get an infection, would you have got it anyway? Perhaps not, with my pneumonia. I mean, that clearly seemed to be related to my CLL in the first place. And I guess for me, personally, I just got to the point of going, “Well, we don’t always know whether it’s directly related or not.
I’ve got back pain. I’ve got some benign tumors in my back. We thought maybe that was causing it. Or is it the CLL growing it the bones cause it, or is it something completely unrelated, just ligament damage, or discomfort from the fact that I’ve been lying around for two years really, not mobilizing enough, not doing exercises despite my physio’s best efforts to get me going. You know, I don’t know, and I guess at the end of the day, we just have to look at the symptoms, really. It becomes symptom management and investigation.
I think it’s very important not to ignore new symptoms, because you never know what’s going to happen. I’ve heard of people having infections in bones and all sorts of things. Whenever I get a new symptom, I have to go to my GP, or I go to my hematologist, and we go from there, really. We investigate and we figure out what’s going on, or try to, at least.
Well, I wanted to talk about that very good point. And Esther goes with me to the doctor, and she knows, I say, “Well, I’ve got these little dots on my skin. Is that related to the CLL, or whatever?” Some things they know, because I call if I have a chronic cough or certainly feel like I have a chest infection, but other things, I don’t always know, but I always bring it up. What about you, Jay? You apparently, were not feeling well for years.
Yeah, well, the funny thing was, I thought I was doing great. I was 193 pounds of muscle. I studied the martial arts for 20 years. I felt great, but I was 50 pounds overweight, so you just don’t know.
I thought I felt fine. I thought that occasionally getting fatigue was part of getting older, but when it got to that point where I couldn’t walk around the block without gasping for air, sooner or later you figure something is wrong. And then you take action. But the truth is, we’d all be better off, I think, if we understood the cues our body is giving us, but I didn’t at the time.
Right, and often the indication for treatment, Maggie, you’ve had various blood tests, but from what the doctors are telling us now in our programs, is are you having night sweats? Is your spleen enlarged? Do you have lymph nodes? Maybe do you have these kinds of things that Adrian
[00:27:59]. Certainly, do you have pneumonia, or recurring pneumonia?
All these things could be indications of treatment, not just the number of your lymphocytes. So, it requires communication. So, do you have really good communication with your doctor now, Maggie, and you feel you have a trust relationship, and that gives you confidence?
I did when I first met with my CLL specialist, I thought, “Oh, it’ll be a 15-minute meeting.” He spent almost two hours with me and talked about everything that was going on for me. If I thought it was a symptom, we discussed it. For me, probably a month before I was diagnosed, I started to get really bad sinus headaches. And I talk to my intern about this. I said, “Could it be the CLL?” And she said, “No, no, that’s ridiculous.” And I talked to Doctor Choy and he said, “Very likely, since this is an inflammatory disease, and this can affect your sinuses and it can affect your respiratory system. Any place that you can carry inflammation in your body.
And I felt like he really listened, because he said, “Here, try these different over-the-counter remedies,” and it’s really, really helped me a lot. But I do prescribe talking to your doctor, telling him anything. And I’m at that age of a female where menopause happens and you get hot flashes, but mine have continued. I’m over 64 now, and I talked to my CLL specialist. He said, “These are probably CLL-related.” So, even though I would like them to be menopausal hot flashes, I do believe they’re CLL hot flashes. I don’t have the drenching night sweats, but I feel like there’s a furnace inside me that just kind of turns on, and it wakes me up at night.
So, I’m trying to deal with that. I keep my room, my poor husband, at around 60 degrees at night. I’ve got two fans pointed right at me, and it helps me get through the night. So, these symptoms are –
But you have that [inaudible – crosstalk] [00:31:18] with your doctor to try to figure out what could be related to the CLL, and at some point, maybe, part of the indication for treatment.
Exactly, and if these get too bad, I’ll say I’m ready.
Well, I’ve been living with CLL for a long time. I have a chronic cough sometimes, there you go. One of the things, though, that we were worried about, and Esther was part of these discussions, is sinus infections. And we were talking about sinuses a minute ago. And so, Dr. Kipps, who’s another doctor at UC San Diego, he said, first of all, you can be prone to infections with CLL, and in your sinuses, the bacteria can have what he called a pool party.
So, what do you do about it? Do you just – antibiotics all the time? He said, “You should try a nasal wash, every day.”
A netty pot.
A netty pot, or there’s some other ways. You can get a little squeeze ball.
Yeah, but this is a little bit more, sorry this is not supposed to be product placement, but this is a bit more pleasant than a netty pot. I just spray this. It’s a sort of A-line spray. I find that really, really good.
Right, and I have something similar, so I went to the local pharmacy. There’s a little bottle you can get, and you put little saline packets in it, and warm water, and it has a filter, and every morning, I do a nasal wash and guess what, no infections. Now, I’m doing other things, as well like I get immunoglobulin once a month, which my doctor thinks is important for me. But the point is, it’s what I can do, and it’s like what you can do Adrian. This is something we can do. We may be prone to nasal infections that could be respiratory infections, could be pneumonia, which is bad news for us with CLL. And you’ve had pneumonia, right, Adrian?
Yeah, that’s right, and throat infections, yes.
I’ve had it, too. So, this is serious business for us. So, these are things, whether it’s diet, whether it’s exercise, whether it’s communication about hot flashes, all of these things. And Esther, when I speak up about something, you normally say, “Call the clinic,” Right?
Yes. And the calling the clinic is two-fold. One is, I agree completely with everything everybody said, the kind of thing that you’re doing, Jay, makes perfect sense. You’ve studied it. You’re taking an approach.
The only caution that I would give Andrew, and especially since I made a mistake early on of doing something we shouldn’t have done, is don’t take on some kind of a supplementary or what you think is a complementary remedy, because you’ve read about it, because five people said it works for the, That if you’re gonna take something on, at least discuss it with your doctor. So, I’ll just tell this quick story, when Andrew was first diagnosed, one of the things we did, besides finding a specialist, we went to a naturopath. Remember this, Andrew? And he said, “Oh, you need to take mega doses of,” I don’t know what it was, Vitamin A or D, it was one of the vitamins.
And then when he finally got to see the specialist at MD Anderson, he said, “So, what supplements are you taking?” and he said, “Well the one thing I am doing is, we’re juicing,” which was okay, “But I’m taking this mega dose of whatever.” And he said, “You know, I think you should probably stop that, because there’s studies that have recently come out that say that it could cause the proliferation of CLL cells. It was like “Eh.”
So, I just tell the story, because the kind of thing you’re doing, Jay, sounds like you’re done a lot of research. I’m assuming your physician knows about it. Those kinds of things are good, to compliment whatever else is going on, but to make sure that he’s on the same page about whether there’s some potential downside to it.
Absolutely. I’ve gotten some – somehow, I’ve gotten some kind of notoriety, you know, and that’s not good or bad. But I’ve had an average of two emails or phone calls a week, people literally asking me, “What can I do?” So, I’m a year away from becoming a counselor, a macrobiotic counselor. So, I’ve been studying this for four years. So, I tell him, from a patient’s perspective, and some of the things they’re doing are just crazy.
And I literally say, “Look.” Always preface it with, “Discuss this with your CLL specialist. And if you are doing something, chart your results, and see, on a quarterly basis, how your liver function is doing. When I was first diagnosed, my liver was, my ALT was 92, which is 50 points too high. Within six months, it went down to 30, which was normal. I had diverticulosis. I had acid reflux disease. That’s all gone now. But it didn’t happen over night, and you do things gradually. And every step you take, you check with your doctor.
And candidly, I have a wonderful doctor. I don’t want to mention his name, because I don’t wanna – But he is the tops in my opinion. And he does not necessarily believe that what I’m doing is going to affect my CLL that much, but what he does like is the results. He likes seeing me healthy. He likes seeing my blood counts so good and stable, and I don’t expect a medical doctor to believe in the dogma that I believe in. I’m using that medical doctor for his knowledge, and it should be a collaborative-type thing.
That was my point, exactly. Thank you, Jay.
Well said, really well said. Okay, so, we have a medical doctor with us, who’s also – So, Adrian, this whole person thing. What can we do that makes sense for us, that’s not harmful, and how do we partner with our doctors? How do you view it?
Well, for me, personally, when I was diagnosed, I was pretty fat. And I think, as a middle-aged guy, I think quite a few of us have a spare tire. And I resolved, straight away, I was gonna lose that. And I did, and that wasn’t because of the CLL. We do have to be watchful about that. We don’t want to be losing weight excessively fast.
So, I did change my diet, not as radically as Jay, but for me, I decided to cut down significantly on carbohydrates, and just to maybe do a little bit of intermittent fasting. And I managed, over a number of months, to lose the weight gradually. But what I would also do, was every now and then, I’d have a cheat week, just to make sure that if I lifted the foot off the accelerator of my diet, that I would actually regain the weight, because I didn’t want it to be misconstrued that it was my illness. But if you look at my weight chart over those 60 months of watch and wait, it was gradually going down in a nice, smooth, controlled way. But unfortunately, that didn’t seem to help, for me, personally. It does for some people, but it didn’t for me.
The other thing I tried to do was physio. I’ve been seeing a physio now, most weeks, sometimes twice a week, since November of 2018, because I had this awful sense of the decline in my mobility. I was using sticks as a 46, 47-year-old, and I still do.
But the physio, I do think, helped a bit, and I think exercise definitely helps, but unfortunately, it’s kinda like there’s a weight pulling you down, and sometimes exercise isn’t enough. But I tell you what, when I was stuck in my hospital bed, unable to get out, this was in November, after my first FCR, unable to get out safely, it was my physio that taught me some bed-based exercises that I think helped me to get out. One of my doctors was saying, “You’re gonna end up in a nursing home, Adrian, if we’re not careful here,” because I was just so weak.
And I just did some very simple things, lifting my legs out of the bed, pushing my bottom off the bed, things like that. Things that my physio had taught me. And then, over a few weeks, I gradually started to regain my strength. And that’s where I am at the moment. My physio says to me now, I’m very badly deconditioned, from the last nearly two years now, of being ill. And I’ve got to gradually build myself up, not overdo it, not boom and bust, not do too much, so that I don’t do anything, but gradually try and regain my strength.
And that’s after treatment, but I think sometimes in watch and wait, if you can get as thin as you can, if you can get to an optimal weight, and if you are allergic to foods, certain foods seems to provoke your inflammation, then definitely cutting those out. All of those things, to me, seem to make perfect sense, again, provided you’re talking to your doctors about it.
Right. Boy, this is such great advice. So, Maggie, how are you staying in as good of shape as you could be, knowing that you may have treatment, but you’re trying to do what you can do? What are things you do?
Right, yeah, so I think, and I do believe it’s the CLL, I do get tired in the afternoons. There’s an exhaustion level that I kinda never felt before. I’ve always been extremely fit and extremely active, so I made sure that I try to exercise every day, but I do it first thing in the morning. I’m a master swimmer and I play golf a lot. I do a lot of walking.
And when I was first diagnosed, I did notice that my times were dropping, as a master swimmer. And so, no I’m just not pushing myself as hard. But I’m still in the pool, I’m still working out. I’m still saying, “Hey, you’ve gotta push yourself a little bit, but don’t overdo it. Don’t way overdo it.” So, I stay active and that’s really important in my life.
I’ll just say, pass on one thing. A British doctor, Adrian, who you may know, John Gribben, is one of the top CLL specialists. He said to me years ago, before I had FCR, and Esther and I would run every day, and I probably couldn’t run as far as fast. He said, “After you have treatment, you’re probably gonna feel a weight is lifted from you.” So, that’s what I did. I mean, I did many of the things you’re talking about, Jay, as far as diet, exercise, but in my case, when it came time for treatment, which was a high white count, swollen lymph nodes and enlarging spleen.
When we knocked the CLL back, Maggie, I did feel I had more energy. And just a couple of other things I’d mention, we were talking, and you were great about it, Jay, saying what’s working for you, and what you’re studying. But everybody’s saying check with your doctor. Esther, do you remember when you read something online, not just about the juicing, but distilled water and we had distilled water, and we lived in Seattle, where Starbucks come from, and you said, “Stop drinking coffee.” And I stopped drinking coffee.
Well, that speaks to what happens to a care partner. I have to be honest, mia culpa, I felt no control over what was happening to you. So, I started to read everything I could find, and at the time, there was a book called spontaneous healing. The gentleman who wrote it was very well known national and internationally.
Seemed to make sense. None of it was super extreme but living in Seattle and not drinking coffee was pretty extreme. So, I had to learn along with you, Andrew, that you have to – there’s a balance. You can’t stop living. You can take an approach like Jay, which, for him, a disciplined, very disciplined approach to eating is working for him. For you and I, what seems to have been working is good, healthy diet, exercise, laughing a lot, travelling, doing those things. That’s working, seems to be, knock on wood, working for you. And as a result, I feel like we’re working together on this. Yeah, it’s like, there’s a point where you don’t want to stop living over it.
Right, right. One other point, I mentioned that I’ve had CLL treatment twice, although separated by 17 years. And Adrian, post-FCR, I hope you have a long, long remission.
But we’re blessed with some very modern treatments now, and that’ll probably be discussed with you, Maggie, and should you need it, you, too, Jay. Lots of new thinking and lots of research, and several of us go to doctors who are in the lab as well as in the clinic.
And so, I feel really confident that if we do what we can: diet, exercise, emotional well-being that you were referring to, specifically, Adrian. If we get our head on straight, and take back control, with our partner, Esther, or whoever it may be for you, that we’ll be in the strongest possible position to live a long, long life. Maggie, do you feel that way when you think about it now? You’ve watched all these podcasts and videos. Do you and your family feel you’re gonna be around for a long time?
Yeah, and I’ve always said that CLL [00:45:10] under the ground. So, I’m gonna be out there on the, you know, the fullest life, the happiest life, and just stay as active and engaged and involved, and like you said, laughter is really important through all of this. When I laugh, I totally forget that I have this CLL, and it works for me. So, that’s my path.
Okay, so for final comment, Jay, you’ve been living with this, doing what you can. What would you say to people, whether they’re newly diagnosed or wherever they are, what advice, knowing that people are different, and you’re gonna be a counselor too? So, tell us what words of wisdom you have.
Words of wisdom is this: I said it earlier, you have to do, you have to take some responsibility for your general health. And I think it’s just really irrefutable, that if you do things like watch what you eat, you try not to be too stressed, you make an occasion to walk a few times a week, you’re just going to feel enabled. You’re going to feel healthy. And you can’t give up.
You have your CLL life, and you have your general health, and they can’t be separated. You can’t have one without – You can’t have good CLL health, I believe, unless your body is very strong. So, do the best you can and take it slowly, but every day, set a goal to do something that might make you feel healthier, might make you feel less depressed. Live life, enjoy life, but don’t equate taking personal action and responsibility for not enjoying your life. To the contrary, you’re helping yourself live a longer and healthier life. That’s what I would say.
I’m just gonna tell you one quick story. Esther and I went jogging at the end of the day, and a woman probably in her 20s ran past us, and I started speeding up. We didn’t catch her, but I was running faster, and Esther said, “You’re running so fast today,” and at the end I said, it was affirming for me that I could do it. That I could chug along a little faster was affirming. It was something I could do in one day that helped me.
Andrew, you look great, so I have to ask you, seriously, I haven’t made you crazy and put you on a special diet, but what do you do besides running?
Just running, and this afternoon is going to be going on a bike ride. And I’m gonna try to go up the hill over here. And then maybe get some coffee, Esther –
But hopefully, not a latte, Andre. No lattes, yeah? No lattes.
We get them with soy. We get it with soy milk.
It’s the sugar. You don’t want the sugar in the latte syrup, you know?
So, I do that, but I think it’s a matter of, after 23 years of CLL diagnosis, just live your life. You said it Jay. And Maggie, for you, you’re playing golf, you’re laughing. You picked yourself off the floor after the diagnosis. You have everybody try to understand as best they can, and you go be yourself. And Adrian, you too. You’re trying little by little, to get back to equilibrium, right?
No, that’s right, and it’s about looking at the positive things. I mean, I think we have to accept sometimes it’s gonna be negative stuff, but there’s also positive things. So I’d gotten to the point where every night I slept outside of a hospital was a real gift, at one point. And just, the ability to, I don’t know, cook a meal for the family was a huge step for me. Things like that. And being grateful for things, and, as you say, moving along that journey and hopefully, heading in the right direction rather than the wrong one is always, always positive.
I think a lot of this, I’m listening to this, a lot of it is attitude. Jay, you asked Andrew what is he doing, and I watch him every day. And he’s just two steps ahead of everybody. He’s just positive attitude, and whatever’s gonna happen, he’s gonna take as much control as he can, he’s gonna rely on his support system and his doctors, and he just keeps moving ahead. And I think that makes a big difference.
Yeah, and I think the fact that you two, Esther and Andrew, do so much to try to help people, I think all of us would agree that if we’re trying to help people, it’s a wonderful thing, and we feel blessed and empowered. So, as bad as CLL is, and I hate having this disease, I think it’s a real bully, in my opinion, I’ve become maybe a more understanding person. So, it’s not all negative, you know. It’s mostly negative, but there are some bright things about it.
There really are, and so I appreciate every day. Maggie, you’re at a beautiful golf resort, La Quinta, so you’re just gonna go swing away now, right?
Right, in about 15 minutes, I’m leaving for the tee box, so it’ll be fun.
Well, I wanna let – Just, thank you for being part of this CLL patient café. I wanna thank our supporters, ABVI and Pharmacyclics, who have had no control over anything we’ve said. This is very free-wheeling, but we hope it helps everybody. Maggie Buckenmayor, I want to wish you all the best with your golf game, and wherever your CLL journey takes you. And don’t freeze your husband out, with the fans and the cool temperature.
Adrian, all the best as you continue the FCR and just hopefully –
No, I’m done with CFR. I’ve had my six. That’s over, mate. No more for me. I’ve had my six. Never again. The UK will pay for the newer drugs for me the second time around, so if I need anything else, it will be one of the newer drugs.
All right. And so, may you go on and get your walking. You’re gonna be jogging with me and jay before long, okay?
I’ll do my best.
You’re gonna be carrying us, he means.
I don’t know about that.
Jay, thank you so much and all the best with you, and I’m gonna read up more about what you were discussing. And Esther, thank you for being my partner all these years, and all the partners out there, wherever you are watching, thank you. You’re a blessing for all of us, and we really appreciate it.
Thank you, Andrew and Esther and everybody else.
Thank you guys.
Thank you guys.
I’m Andrew Schorr, from Patient Power. Thanks to the Patient Empowerment Network, for putting all this together, and thank to our sponsors for helping us, so we can do this. As I like to say, remember, knowledge can be the best medicine of all.
https://powerfulpatients.org/pen/wp-content/uploads/CLL-Patient-Cafe®-1.png600600Kara Rayburnhttps://www.powerfulpatients.org/pen/wp-content/uploads/New-Logo-300x126.pngKara Rayburn2019-04-09 17:36:292019-09-02 12:32:08CLL Patient Cafe® – March 2019
Why sleep should be a main priority for those battling cancer
Experiencing trouble sleeping is common in both adults and children. There are many contributing factors as to why it’s difficult to get the sleep we want and need. Perhaps our sleep environment is not conducive, something is weighing on us mentally, or our children are awake at night. Sleep apnea or insomnia could also be playing a role. In addition to other protective factors, like proper nutrition and regular exercise, sleep is extremely important for our overall health. When something else is going on with our body that affects our health, such as a cancer diagnosis, it’s doubly as important in those cases.
About one third to one half of cancer patients report sleep disturbances. Many report having insomnia and feeling as though it is difficult to sleep at all. The percentage of cancer patients who report feeling this way is almost double the general population. For cancer patients, there are unfortunately a slew of reasons at play that are contributing and making sleep very hard to come by. At various points in time, getting the rest your body needs may prove difficult. Understanding the reasons sleep may be nonexistent is the first step in moving towards a solution. Next, implementing strategies to support restful sleep will increase your body’s energy and its ability to heal. Sleep heals us. Many people focus on the cancer treatment itself, followed by things that are known to make us stronger, such as eating protein and going for walks. Often sleep is overlooked as a crucial part of a cancer patients overall treatment plan.
So, why is it that cancer patients struggle to sleep in the first place? There are different reasons and every patient will react differently, physically and emotionally, to the journey of battling cancer. Some common problems include:
Stress/ anxiety about their diagnosis
It’s normal for our mind to race when we are worried or concerned. Throughout different stages of treatment, patients have a variety of stressors that may affect them such as fear of the future, telling their friends and family their diagnosis, as well as financial, work-related and/ or relationship concerns as well.
Interrupted sleep environments
Often when someone is getting cancer treatment, friends and family may offer to come to their home and help. While that is a kind gesture, it can also be problematic as sometimes it’s hard to get adequate sleep if there are guests in one’s home. Keeping this in mind and setting healthy boundaries is important for the patient and whomever they share their home with.
Symptoms, such as nausea and headaches, from treatment
Depending on the intensity of the symptoms and their duration, asking your Doctor/ care team for support on managing those adverse side effects will prove to be helpful. They may have some tips and ideas for how to specifically combat the symptoms, allowing more time for restful sleep.
Pain in one’s body from the cancer
Most cancer patients report the aches and pains in their body interrupt their ability to fall and stay asleep. Stretching, yoga, staying warm/ hydrated, medication, and other forms of pain management/ medication can be used. The more this overall pain is managed, the more the patient will be able to rest and heal.
Excessive sleepiness during the day
Cancer takes a major toll on one’s body. During the day, especially if the person has not slept well at night, they may be extremely fatigued. This pattern throws off the body’s normal sleep cycles and its circadian rhythm. It may be difficult for patients to regain their nighttime sleep in these scenarios.
There are a variety of reasons why sleep is vital if you are in any stage of cancer treatment. Many of the drugs used to treat cancer lower and weaken one’s immune system. Chemotherapy, a common cancer treatment, can affect the immune system for quite some time, even after the patient is done with those treatments. According to The National Sleep Foundation, sleep is a major component when it comes to boosting the immune system. “Without sufficient sleep, your body makes fewer cytokines, a type of protein that targets infection and inflammation, effectively creating an immune response. Cytokines are both produced and released during sleep, causing a double whammy if you skimp on shut-eye.”
Targeting inflammation is also especially important for cancer patients, seeing as the body can become inflamed from the cancer itself and/ or the commonly used treatments for it. Reducing the inflammation in the body helps its ability to fight off infection and heal.
Besides building up the immune system, being well rested is also important because it improves our mood and decision-making skills. There are many decisions that need to be made by the patient and family, such as length of treatment, treatments they are willing to try, treatments they are opposed to, etc. Being well-rested helps people to be more energized and have a clearer, calmer ground to make these difficult choices from. Extreme fatigue can lead to (or contribute to pre-existing) mental health disorders such as depression and anxiety. In order to make sound decisions for one’s physical, mental, and emotional health, sleep is an important factor that should always be prioritized.
If someone in your life is suffering from cancer, it’s common to bring a meal or offer a ride to an appointment. These are wonderful ways to support that person. In addition, perhaps consider offering to watch their kids in the afternoons so they can take a nap or take household chores and errands off their plate to lower their stress and hopefully improve their ability to gain extra consistent sleep.
If you are a cancer patient do not be afraid to advocate to the people around you so you can best meet your sleep needs. This could mean asking your Doctor about symptoms that affect your sleep or asking your partner to help you get as much sleep at home as possible. That time while you are resting is crucial for your body as it fights the cancer, as well as your overall health too.
Aaron is a sleep enthusiast at Snooze EZ. He blogs and researches about all things that are sleep related due to personally knowing the benefits of getting enough sleep. If he was not writing about it so much, he might could get even more!
https://powerfulpatients.org/pen/wp-content/uploads/Untitled-design-3-7.png600600Aaron Stevensonhttps://www.powerfulpatients.org/pen/wp-content/uploads/New-Logo-300x126.pngAaron Stevenson2019-04-08 16:12:012019-09-02 12:28:46The Importance of Sleep for Cancer Patients
Anxieties from the day can be inescapable by night. You can try so hard to sleep or to stay asleep, but worrisome thoughts cloud your mind and make it impossible to clear your mind enough to doze off. Issues like money, children, and work can seem overwhelming, where such anxiety-provoking topics develop into stress that causes your mind and body to stay awake. So what can you do?
Photo by Gregory Pappas on Unsplash
There are several comorbid factors to stress that can be problematic sources of your insomnia as well. Don’t let anxiety or these related matters control you though. Instead of trying to control the stressors in your life by thinking of them all the time, focus instead on what you can actually control:
Your Sleep Space
Photo by Brianna Santellan on Unsplash
Make your bedroom a stress-free sanctuary. Keep your bedroom dark, quiet, and cool, and use it only for sex and sleep. Since you can’t completely control anxiety, eliminate any other threats to your sleep quality, such as what type of mattress you sleep on. Consider what would the right mattress feel like for you, based on your individual sleep preferences. Use a fan to drown out extra noise, and make sure your pillows are comfortable too. Turn any clock away from you so you don’t get stressed out by seeing it is very late, if you are still awake. If you don’t fall asleep in 15 minutes, leave your bedroom and do something relaxing in another room.
Photo by Brianna Santellan on Unsplash
Establishing daily and nightly routines is key for regular sleep, even on the weekends. Block out seven to nine hours for sleep every night, and make sure you wake up at the same time on both weekdays and the weekend. Stop consuming nicotine, alcohol, or caffeine at least three hours before your set bedtime, and avoid working, watching TV, or using a handheld mobile device in bed right before you try to fall asleep. Make it habit to set aside 30 minutes prior to bed to read, listen to soft music, or meditate, so you can relax, clear your mind, and settle into your bed as a stress-free tranquil zone.
How You are Staying Active
Photo by Taylor Jacobs on Unsplash
How active you are during the day impacts your sleep quality as well. Exercise is excellent for both physical and mental health, where exercising regularly helps you establish regular sleep patterns. You can take out your frustrations in exercise, where you leave the gym with a worry and frustration free head. Exercise also produces mood-enhancing endorphins – just remember to exercise only in the morning or afternoon, as those same endorphins will keep you up if you exercise right before bedtime. And your exercise doesn’t have to be major – even one brisk walk around your neighborhood each day has been demonstrated to help alleviate chronic insomnia. As exercise has been demonstrated to help you develop strength both physically and mentally, remember that mental health is a factor to also be considered when placing value and effort in improving your sleep life.
While increasing anxiety and decreasing sleep can seem like a never ending cycle, you can put an end to what feels so frustrating. By putting these principles and guidelines into practice, you are being proactive in making a difference for you. If you still have difficulty falling or staying asleep, reach out to family and friends for support, and consider seeing a therapist.
Lisa is a freelance writer from North Carolina that recently lost a dear family friend to their battle with cancer. Since the passing of her friend, she faced many sleepless nights but has found peace in writing and educating on the impact grieving has on our day to day lives.
An estimated 51,500 adults in the United States get diagnosed with oral and oropharyngeal cancers each year. Many of these people require oral surgery as part of their treatment. Oral surgery itself can present problems, such as damaging teeth and gums, causing pain and swelling. Dealing with these before and after surgery can help to speed up your recovery time and improve your comfort throughout, getting you back to life as soon as possible.
Caring for your teeth
Many cancer patients lose their appetite during treatment or struggle to eat after oral surgery. They are encouraged to have high calorie drinks for nutrients, but these often contain a lot of sugar and can be very damaging to teeth.Oral surgery for cancer can be done after doses of chemotherapy or radiation, which can weaken teeth and gums. If you have any teeth that are damaged or vulnerable you should consider having these extracted before surgery as bone necrosis can occur afterwards, particularly if you’ve had oral radiotherapy. Once you’ve recovered, lost and damaged teeth can be replaced with dentures or dental implants to give a natural look and feel, helping you to live a normal life again.
What you can eat after oral surgery
Your surgeon will offer you advice specific to you, but there are some basic guidelines you should follow. Once any bleeding stops and for the first two days post-op you can eat soft foods and liquids, such as yogurt, soups and smoothies. Include foods that are rich in vitamins A and C as these help to speed up recovery from surgery. A study from the National Institutes of Health gave patients 500-3,000 mg of vitamin C, which is 8-50 times higher than the RDA. All patients were recovering from various types of surgeries, including oral surgeries. They found that the high doses promoted new collagen synthesis, which helped wounds to heal faster. Research from the University of Michigan also found that high doses of vitamin C before surgery reduced the risk of excessive bleeding, so upping your intake before and after can be beneficial.
Dealing with pain and swelling
Unfortunately, after almost any oral surgery you will experience some pain, swelling and possible bruising. Many surgeons will advise you to regularly put ice on the area to reduce swelling, however recent research indicates that ice can stop the immune system’s natural response and actually delay healing. Ice can be a natural pain relief though, so if you choose to use it, apply it for 5 minutes at a time with 20 minute breaks in between as this is less likely to stop the body’s natural response. You’ll probably receive pain medication too, make sure you take this as instructed, even before pain occurs as it can prevent it.
Recovering from oral surgery can be painful, but it can also be a step in the right direction for your recovery, helping you to lead a normal and happy life. Pain and swelling are to be expected, and consuming soft foods and plenty of nutrients and minerals can help with this.
https://powerfulpatients.org/pen/wp-content/uploads/Oral-Surgery.png600600PEN Editorial Staffhttps://www.powerfulpatients.org/pen/wp-content/uploads/New-Logo-300x126.pngPEN Editorial Staff2019-03-06 17:06:512019-09-02 12:32:07Tips For A Smooth Recovery From Oral Surgery
https://powerfulpatients.org/pen/wp-content/uploads/Untitled-design-24.png600600PEN Editorial Staffhttps://www.powerfulpatients.org/pen/wp-content/uploads/New-Logo-300x126.pngPEN Editorial Staff2019-02-19 20:41:412020-01-29 10:56:23Barby Ingle – What Advice Do You Have For Someone Who Is Newly Diagnosed?
Hello, I’m Beth Probert, and I am a patient advocated and ambassador with Patient Power.
I am also an MPN patient. Thanks for joining us for this Patient Empowerment Program in partnership with The Leukemia and Lymphoma Society. Today, our program is: Coping with the Emotional Side-Effects of AML. And we are joining our AML community.
We’re gonna focus on where we’re headed with treatment of Acute Myeloid Leukemia; what patients can look forward to in the coming year.
We will also answer questions that you can submit to AML at patientpower.info. And please note that we cannot provide specific medical advice over the internet. And it wouldn’t be fair to you. We always recommend that you seek care from your own doctor or AML specialist, and that’s how you will get the best treatment for you.
I’d like to start now and introduce our panel.And we’ll start off with Dr. Thomas LeBlanc. A medical oncologist, palliative care physician, and patient experience researcher from Duke Cancer Institute. Welcome, Dr. LeBlanc.
Hi, thanks for having me.
And I would like to introduce Michelle Rajotte. She is the Associate Director of the Leukemia Lymphoma Society’s Information Resources Center. Michelle has been with LLS for 13 years. Hi, Michelle.
Hi, good to be here.
Thank you. And last but not least, I’d like to introduce our patient advocate today, James Bond. And James has survived Multiple Myeloma for 27 years, and AML for the past 7 years. James and his wife, Kathleen, have shared their story in 29 states. And patients can contact him directly at his email, which is Jim.Bond48@gmail.com.
So, thank you for joining us today, Jim.
Happy to be here.
Great. Well, Dr. LeBlanc, I would like to start with you. Tell us a little bit about your background in AML and palliative care, please.
Sure. So, by training I’m an oncologist. But when I went through my cancer care training, I realized that oftentimes we fail to really attend to some of the issues that are most important to patients and families. And those might be things related to symptom burden, quality of life, emotional well-being, communication, understanding of prognosis.
And so, I ended up pursing additional training in palliative medicine where those types of issues really are the focus. And in doing so, got a sense that really adding specialist palliative care to cancer care and blood cancer care particularly, really could improve many aspects of the experience for patients and families.
And ultimately that is what my clinical practice and research have come to focus on. But in my clinical practice, I largely see patients with myeloid malignancies, including Acute Myeloid Leukemia and some related conditions.
That is so interesting and very unique because very often we see our doctors and we don’t get the whole palliative side of it. So, I can honestly and personally say that that is just a wonderful added bonus. Thank you.
And Michelle, can you tell us a little bit about your role at LLS, and really what the goal of the information resource center is?
Sure. So, I’m part of the Information Resource Center at Leukemia Lymphoma Society. Which, The Leukemia and Lymphoma Society’s main goal is to help find a cure for Leukemia, Lymphoma, Hodgkin’s disease, Myeloma, and improve the quality of life of all patients and their families.
And IRC is apart of that. So, basically, what we do is – it’s staffed by information specialists who are master level, either social workers, nurses, or other healthcare professionals who’ve been trained in blood cancer. And we can do anything from answer questions, provide disease information, help with clinical trial searches, find different support resources, refer to other organizations if we need to for other resources. But really, it’s anything that someone needs in the moment.
So, we’ll talk with them over the phone, through email, or through chat online, and we figure out what it is that they need based on talking to them, or whatever they provide to us. And then, provide them with the resources and support they need.
Wow. And that is just invaluable. And we definitely need to bring focus to the cancer patients and what your department could ultimately provide to them. Thank you.
So, Jim. You are a long-time survivor. How has your cancer diagnosis impacted you emotionally?
Well, it’s been like riding a roller coaster. My care-giver wife, Kathleen, Kathleen is sorry she can’t be joining us today. But the lowest point, of course, was getting diagnosed with a deadly incurable blood cancer. My first one, Multiple Myeloma. And then the second one, AML, many years later.
And so, what we tried our best to do is, to try to even out that roller coaster ride emotionally. And, I’ll give you an example, after 10 years of dealing with Myeloma, I was told, Jim, there’s nothing left that can help you, you need to go to a hospice. And that was obviously crushing.
And what we tried to do is pull each other up and say, “Look, we’ve been through tough spots before.” And we figured out that just rely on the doctors, rely on our own research ability, and they’ll be something coming up. And we were able to figure out, hey, there’s a clinical trial that was mentioned to us, and within a month of being told to go to a hospice, we were out of town in a clinical trial, and within two weeks, I was told, “You’re in remission.”
So, that was a tremendous high. And again, what we try to do when we get really good news is pull each other down and try not to be so excited, but we try to even things out. And that’s very difficult to execute, but for 27 years now, we’ve had a good deal of experience. There are a few other tings we do emotionally, we say, “Look, let’s do all we can, and then let’s not look back and second guess ourselves.”
And even to make it more normal, we cut off all cancer discussions with ourselves, ideas, or with a family member at 8:00 p.m. our time. We say, “You know what? Let’s just do what we’re gonna do at night, and let’s defer that to the morning.” That tends to let our emotions calm down and let us live more normal lives. At least in our minds.
It has not been easy. It’s been very difficult and emotionally at times, we’ve actually played a role of trying to lift up the medical team who, the AML diagnosis in particular, they explained to me, “Jim, you’re 64 years old,” When I got AML, that was seven years ago. They said, “Your chances of survival are not good. The only way you can live is through a fourth bone marrow transplant. And this one has to be not from your matching sister, but from an unrelated donor, if we can find one.”
So, they really encouraged me to consider just hanging up, but our approach, and this helps us emotionally is, no, we’re gonna treat this thing called cancer like a problem. We’re gonna put it in front of us, and we’re gonna deal with it as analytically, or unemotionally as we possibly can. And lo and behold, the doctors, as they’d come around in my, I don’t know, 10-week stay in the hospital, whatever it was, they would keep trying to say, “Jim, don’t get your hopes up. This might not work out.”
And it did work out, and we found ourselves much better off by, I do my favorite thing, and that is, I make myself exercise each and every day. And sometimes that exercise is not much, it’s walking with my IV pole around the floor section when doing a transplant.
Or it’s walking on my treadmill on snowy icy Ohio days like today. But that helps me emotionally because it gives me something that’s not cancer, it’s quiet time to think, and it really led to something that’s been just magical in terms of helping both of us emotionally.
When I had to leave town to do the clinical trial, my wife, Kathleen, got to thinking as a long-term volunteer of the American Cancer Society, she realized that there are not enough people in the country aware of these things that the ACS has called, “Hope Lodges.” So, she founded, launched, and leads, to this day – this was 13 years ago, she launched the first one. And I was not a cyclist, but I saw a link between the exercise that I think is so vital for me emotionally and physically, and this bike ride. So, I decided to buy a bike and trained. And I’ll be darned, I’ve ridden it every year four days, 328 miles from Cleveland to Cincinnati.
Wow, well that is really inspiring.
Thank you. And that helps me tremendously emotionally because that training and riding takes up a good three and a half, four months of my year, and I look forward to that, and the fundraising is tremendously exhilarating because I get to hear from people that I don’t hear from that often.
So, the key there is emotionally, I think, is just having a long-term plan, and not letting –
And Jim, I’m just gonna jump in really quickly, this is amazing information. So, hold that thought, we are going to jump on some of the thoughts you said, and I do want to say real quickly, I love the, “We” in that. We.
And we’ll click back onto that. So, I’m gonna hop over now to Dr. LeBlanc. And could you go through, with your vast experience, what are the key emotional side effects that you see your ALM patients facing day to day?
Yeah, this is such an important question, and it’s one that we don’t ask often enough, and we don’t talk about these issues very often, unfortunately. So, I’m really excited that we’re having this webinar, first of all. And I’ll tell you, it’s important to recognize as well, every patient, every person is different. So, there is not one quintessential AML experience. That’s really important to recognize.
But at the same time, when we have studied this issue and interviewed patients, and care givers, and family members, there certainly have been some common themes that have come through about people’s experiences. And one of the one that is, I think, particularly important to recognize is the sense of shock at this diagnosis. Now, acute leukemias, we call them acute because they tend to come on very quickly and suddenly.
And many of the patients we see will say things like, “I was fine three weeks ago. And now I can’t even walk up a flight of stairs.” And, “I’m so tired, I’m taking naps, this is not like me. I usually run marathons, and now I can only run a couple miles, something is going on.” And this really degenerates, for many, people over the course of day or a few weeks.
And sometimes it means they end up urgently in the hospital and are told, “You can’t leave. Something’s going on, we don’t really know what it is, but we’re concerned. You might have leukemia.” And if they’re not at a large medical center, they may get shipped off hours away from home to a place that’s not familiar where they don’t know anyone.
So, that shock and suddenness of the diagnosis makes everything else much more difficult, and it sometimes creates, even, social isolation related to where AML is treated. Where it tends to be treated more so at academic centers than it is in the community, although, certainly, some of these treatments are provided in the community.
But patients getting high-dose therapies do tend to come to large research centers. So, we’ve certainly seen that issue impact many patient’s experiences. The other one that comes up quite often, that really compounds the decision making and the emotional difficulties, is the issue of uncertainty. So, unlike many cancers, we really don’t know what to expect when a person is diagnosed with AML. And everyone asks, “Well, what stage is this?” and we don’t really have stages for this disease.
We, certainly, have ways that we can try to get a sense for what we might expect for the patient who’s sitting before us. And we do all kinds of fancy testing, and we talk at length about those issues, but at the same time, we really can’t say what’s going to happen to you, my patient sitting across from me who I’m trying to help guide through the process.
And there are actually a lot more risks associated with Leukemia treatments as you heard Jim talk about. A stem-cell transplant is a difficult and risky process, and sometimes that’s part of curing AML, or hoping to cure AML. But even high-dose chemotherapies in the hospital, some people actually do have really difficult complications, and even can die from those treatments, and yet, those are the treatments that usually are required to cure a person.
So, we have to have these difficult decisions made sometimes under a lot of distress emotionally, and amid the suddenness of this diagnosis, where we say, this is probably the best treatment for you, and it gives you a chance at cure, but it’s not a guarantee. And some people end up not making it out of the hospital. And usually what happens is, that’s just such difficult information. Many folks shut down and they say, “I don’t know, what should I do. Tell me what to do.”
Or they’ll turn to a family member or a friend who might or might not be around and available during that difficult time, especially if they’re in another city away from home. So, these are some of the things we’ll commonly see when patients are newly diagnosed with AML.
Wow. That is very intense. And there’s obvious emotional connections. And sometimes we hear someone’s diagnosed, and we completely forget that emotional side. So, I wanted to ask you, as well, you’ve been involved with research into the relationship between the emotional stress in AML patients and the overall prognosis. Could you please explain how the study was conducted, and what were some of the prevailing results of this study?
Sure. So, we did a longitudinal study of patients with AML who were being seen and treated on our in-patient service. So, these were mostly patients getting high-dose chemotherapy who would be stuck in the hospital for a month or even a bit more.
Like Jim described, getting these really intensive treatment regiments. And this was a study basically aimed at helping us better understand what people go through when they live that. And certainly, I’ve seen that in caring for many patients with AML, as have our nurses, and other members of the cancer care team, but actually, there has been very little formal, objective study of the patient experience with AML and related blood cancers.
So, what we did is we actually surveyed patients using validated instruments, and we assessed their symptoms, their quality of life, their overall distress levels, and in addition, we assed their understanding of their illness. Their understanding of what we call, “prognosis,” The idea of what the likely outcome of the treatment or the disease is going to be. And we did all of those – that whole battery of assessments every week when they were in the hospital, and then when they were out of the hospital, we did that every month.
And we followed patients for six or even upwards of 12 months, and different things happened. Some people went into remission and were cured, some people had relapses, some people went into transplant, some people had transient remissions, or even multiple relapses, got additional treatment. And by following patients over time, we were able to develop a profile of the patient experience with AML and look at different versions of that. Including, what people understand about their illness, and how that relates to their overall emotional well-being.
That is amazing. And was there something that just jumped out real quickly as far as the largest response rate you saw when people were taking care of that emotional part?
Well, the concerning thing that we found, which unfortunately is an issue across all of cancer care is that many people who are diagnosed with AML, especially when newly diagnosed, really don’t have a good understanding of the likely outcomes.
And it’s certainly not for lack of talking with patients and families about these issues, but it probably is a manifestation of the fact that this usually happened suddenly, as I mentioned, and it’s so emotionally overwhelming and difficult that it’s actually really difficult to contextualize the information that’s provided. And we, I think, end up overwhelming a lot of patients and families with so much information, that sometimes there’s a bit of a forest and trees problem, where maybe the most important factors don’t always get explained clearly or don’t come through well.
And we don’t always go back and check in about whether we did a good job of explaining things, which is unfortunately a shortcoming that most of us struggle with in taking care of patients. Communication of complex information is very difficult.
So, we found that many folks didn’t understand, for example, that the treatment they were receiving maybe wasn’t likely to yield a cure, which is true in some instances of AML. Or they might not have had a very good understand of the risks. So, one study, for example, suggests that AML patients may actually think the treatment is way more risky than it really is. And is that prompting some people to not receive intensive treatments that maybe could be the right choice for them and the most helpful for them. So, that was the one main interesting finding.
And then, related to that, unfortunately we also found that many patients who do come to more accurately understand the outcomes that are most likely with their particular situation, some of these are better than others, everyone’s different, the more accurately people understand their illness, there tends to me more emotional distress and sadness. Perhaps realizing that this is a very difficult disease to treat. And unfortunately, when we were doing this study, this was before we have eight new drugs approved in the last two years.
So, hopefully some of this has changed. But that’s why we’re having this webinar, and why we need to talk more about these issues.
Absolutely. So, now, Michelle. I definitely see that your role at LLS plays a huge part in this. And in your experience, how do you deal with this? What resources seem to be the most effective that you can provide patients in coping and the emotional side of this cancer diagnosis, and also, taking parts of what Dr. LeBlanc just said, I would love to hear from you now and what your role is.
Sure. I think it’s different for different people. We’ll talk to people who want to know everything, and we’ll talk to people who just say, “Just tell me the basics, I can’t get overwhelmed right now.” And it also depends on where they are in their cancer journey. Are they just diagnosed; are they relapsed? I think a big piece is being able to talk to other people who can relate to what they are going through.
So, other people who have been through this already and have gotten to the other side and feel like, okay, it can get better, there is hope. Here’s some things that might help. Because unless you’ve been through it yourself, I don’t think you can completely understand. You can empathize, you can be there for someone, but your friends and your family may not be able to give you that support that someone could that has been through it.
So, for example, at LLS we have the Patty Robinson First Connection Program, which can help over the phone to be able to talk with someone. And they may be across the country, but they may be very similar in background to you and be able to answer some questions that you have while you’re going through things.
There’s an LLS community where you can go on and talk with people. We have a lot of online support groups. There are online chats that are set up to be able to talk with, again, others, it could be across the country, they’re people you may have never had the opportunity to meet. Or if you’re not doing well, or you’re in the hospital, or your immune system’s compromised, you still can reach out and get that support.
And it’s not going to be something where you physically have to go somewhere, but there’s those options too. Or someone may not be ready to go sit in a group and talk about what they’re going through but can sit in front of a computer and just say, “All right, I really do need to talk to someone.”
Also getting professional support from a social worker, or a counsellor, or just anyone who can help you get through this because it is extremely stressful. And some people think, “Oh, I really don’t need that.” But it may be exactly what you need just to help you get through it.
Also, pulling in friends and family. And again, sometimes they may be more stressful because they don’t completely understand, and even though they’re trying to help sometimes it may have the opposite effect, but the intention is there, and it’s good to have them there, even if it’s just to drive you to a doctor’s appointment. And help you understand what the doctor’s talking about.
Wow, that is very impactful. It sounds like you really give the patients a complete tool kit as far as how to have these conversations and the unbelievable amount of resources that are available to them. So, that is invaluable. Thank you, Michelle. We’ll get back to you again.
And Jim, going back to you, did you reach out to your doctor in regards to this whole emotional turmoil, and you said earlier the, “Roller coaster.” Was that a talking point with your doctor, by the way, on how you’re feeling and how to cope? What direction did you take when you were first diagnosed, and was your doctor part of the conversation?
Well, we’ve been very blessed, very lucky. My first doctor who diagnosed me, he really helped me by answering this question that I asked.
And asking questions is a good way for me to relive stress and gain information, like the kind of information that Beth and Tom talked about.
When I was new to blood cancer, I said, “Doctor, now, if you were in my shoes, whom would you have treat your case?” And frankly he was shocked because he was at a leading cancer institute in my hometown here, in Cleveland Ohio, and he gave it real thought. And his compassionate answer blew me away. He said, “Jim, the professor who taught my blood cancer course at the medical school works in another hospital. Another leading cancer institute here in Cleveland. And if I were in your shoes, I would go to him.”
Now, what I did – and for 10 years, until he retired, that man helped us, my wife and I, emotionally and medically in more ways than I could ever describe.
An 8:00 phone call one night, and which we had never gotten from him, his name was Bob and of course, it’s a doctor, it’s an oncologist, I’ve got a deadly cancer, he’s calling at night. I’m thinking, “Oh, my god. The world’s coming down.” He really relieved our stress, he said, “Jim, those shoes you had on at your last appointment, may I ask you where you got those?”
So, like you said, Tom, each case is unique, and in our case, stress has been relived in some very unusual ways. I got in a car accident after my first of four stem-cell transplants, and my wife was having real problems with stress because now I was in remission and seemingly home free until it came back five years later, but she was really stressed out until I had a car accident where, not my fault, but somebody t-boned me and it really was a tough accident.
I was okay, but the car was wrecked. But when I called her to tell her that, she flipped out. And all this pent-up emotional stress she was going through came out, and it manifested in her yelling at me, how could I possibly have an accident after all we’ve been through? And the thing is, she caught herself, she listened to herself, and she realized, oh my gosh, what’s the point in getting yourself all in a knot over your incurable deadly cancer? You can get taken out by a car accident as any time. Things like that.
Absolutely. So, she really put it in perspective for you, didn’t she?
It really did. It really did. It just happened, it was coincidental that it happened, but it did. And so, we’ve used that.
Another thing that really helps us with stress is, and this is gonna blow some people away, but the longer we’ve survived with these two cancers, the more we’ve gotten asked to share our story around the country. And if fact, in two countries overseas.
And here’s the thing. We realized from the very first story telling we did in our home town, how much telling our story helped us emotionally. We looked at each other when the couple left our house and we realized, oh my gosh, just sharing our story and the roller coaster parts of it, not the technical parts, but just the emotional part, that really helped us. And so, we welcome other opportunities, and we encourage other survivors, whether it be short-term or long-term survivors, to consider the kind of things that the LLS has, and other organizations that get us out there, get people out there to share your story. It is very helpful for us. And that was a huge surprise to us.
Well, that is wonderful. And Michelle, I’d like to come back to you for a moment. Do you have resources that you can provide to caregivers and patients with AML, that if they do want to share their story, and is that part of what you do, as well?
Yes. That is part of the Patty Robinson First Connection program. What it is, it’s trained patient volunteers and family members who’ve been through this, who then want to be able to reach back out and help others who are going through it now. So, that’s one of the things they can do. They can volunteer at their chapters, and there’s always a way to get involved that way. There’s things on our website where people can share their story. There’s lots of different things. On the LLS community, there’s a way for them to be able to post what they’ve been through. There’s blogs that we do. There’s tons of different things. And as far as the care giver, Jim, you bring up a good point, they are going through a lot of stress, as well. And they need just as much support.
And we do have a lot of good caregiver resources now. We have a caregiver workbook that we can send out that has everything you could possibly need as a caregiver to know. And it’s divided into sections, so it’s not overwhelming, but it’s a way to have a roadmap to try to figure out, okay, what do I do? Because just like the person who’s been diagnosed, the care giver gets thrown into this and doesn’t know, what do we do; where do we go; what questions do we ask? I don’t even know where to start.
And a lot of times that’s the question we get at the IRC is, “I’m calling you, but I don’t even know why I’m calling you because I don’t even know what I’m supposed to know.” So, it’s really helping people try to figure out, what is that next step? And that’s really all you have to focus on. If you try to look at the big picture, it can be really overwhelming. But if you can get to the next step, that’s something that’s doable.
Wow, that’s wonderful to know you folks do provide those resources. Thank you.
So, Dr. LeBlanc, I’d like to shift over to managing fear, anxiety, depression. So, you mentioned a few times that being diagnosed can be so overwhelming, and we can’t ignore that this could lead to anxiety and depression. What sort of things do you recommend to your patients to allay these fears, and to put into place in their life in dealing with this? It’s obvious that for most people it is going to lead to the anxiety and depression.
Yeah, this is such an important question, and it’s a really difficult one to address. Most of the time, I do recommend that people talk about it. And sometimes that’s the most difficult thing to do even though it sounds obvious, but it’s often the elephant in the room.
So, many times, the doctors and other clinicians seeing patients with AML and other cancers are just so incredibly busy and also fixated on all of the medical details, and the labs, and the scans, and other treatments, complications, doses of chemo, all of these things that we need to be focused on, of course, that we forget about the person, and the way that they’re struggling with these issues.
And it’s not that we don’t care or that we’re bad people or anything, it’s just that’s never the number one priority when you have to get all of the details straight to make sure the person gets the right treatment. I try to ask, but sometimes we don’t do this. So, for example, if there are other clinicians listening and wondering how to do this, one thing that I do is to just say, “This is really difficult to go through. How are you holding up? What do you look to for strength?”
And I will ask the person there with them. Usually patients aren’t there alone, and typically the person who’s with them is the person who’s really helping them keep it all together. Whether it be a spouse, a family member, a caregiver, a friend.
And I usually turn to them and also ask them, “How are you holding up? What are you seeing? What is the patient not telling me?” You know? What are they going through that they’re – sometimes people will put on a brave face for the doctor and they won’t tell me how much they’re suffering at home, and I really need to know so that I can help.
So, really the best recommendation is open and honest communication. And the other great one is to seek out resources like the ones we just heard about. I sometimes will encourage patients to seek out a family therapist, a psychologist, somebody who they could see in the cancer center, a social worker, someone who they can sit down with for an even longer period of time and just talk about how difficult this experience is. And just talking about it sometimes is really some of the best medicine, honestly.
Wow. Yeah, I love the tie in to with making sure that the caregiver is doing okay, as well.
We often look at them as a pillar of strength and forget that they need those resources.
And one of the things that I personally feel is really really helpful, and I’ve heard from the AML community as well, is the mind, body, soul; exercising, meditation. And Michelle, I wanted to ask you, is that something that, when you talk about resources, that your department provides? Do you find that that’s a very often asked question, and/or it’s a topic that you like to recommend to patients?
We get a lot of questions about, what can I do? How can I help myself get healthier, or stay well? Or how can I help myself get stronger, or what can I do? And I think a lot of it is, you feel very powerless when you’re diagnosed, and you really don’t have any control. So, if there’s something you can do to feel like you’re taking part in your care and making decisions about some things you want to do, that’s great. We always say, “Check with your doctor to see what’s okay; what’s safe for you to do right now depending on how you’re doing.”
But we have a lot of resources on nutrition, we have a nutritionist that can do a consult, either over the phone or online through email. We have a lot of different resources, and webcasts, and podcasts, and videos, and we have a ton of resources.
It can be a little overwhelming just to go on to the website and try to figure out, okay, what do I look at? Where do I go? So, I would encourage them to call the IRC. We can walk you through, depending on what it is that you’re looking for in the moment, where to find it. How to bookmark it, so you can find it later.
But again, I think it’s really important to discus it with your doctor to see – obviously if you wanna go for a walk, and you’re okay to do it, that’s great. But if there’s a chance that your platelets are very low, and if something can happen, then you gotta check with them about that too. So, we’ll get an idea of what they can do, but we always send them back to the doctor, make sure whatever they decide to do, whether it’s supplements, again, check with your doctor because they can interact.
But anything they want to do to help themselves get stronger or take care of themselves is always a positive.
Wonderful. And, Jim, I’d like to ask you to stay on this topic for a minute. Could you give any advice about support groups?
Is that something that you found to be a great resource in dealing with this kind of anxiety and depression?
Yes, I think support groups are for people who want to go to a support group. Put yourself back 27 years ago when we first we introduced to blood cancer. There were not a lot of support groups available. And we started out with keeping it more to ourselves and our family, and then as we grew comfortable with living an managing the fear, the risk, the anxiety, our circle spread out. But it really was not until we got invited to share our story that our eyes were opened of the power of support groups. And we could see it happening.
One other thing that, Tom, I’d like to mention to you, one of the most effective way to manage fear for my wife and I was late one Sunday night lying in week number six, or something, in the last transplant for AML, and I’m on the ropes, I’m in tough shape. And the phone rings, and it was my myeloma doctor from Boston where we go twice a year, his name’s Paul Richardson, he’s an outstanding, compassionate doctor.
It was Paul, and Paul said, “Jim, I’ve just talked to your wife Kathleen at her home,” she had just left for the night. And he said, he said to her what he then said to me. He said, “Jim, I know you’re in a tough spot, but I want you to know, that we’ve got other patients here at Dana Farber, who have been through exactly what you’re going through, myeloma followed by AML, bad, bad prognosis.”
And he assured me that I could do it. And, Tom, what that doctor’s phone call meant to my wife and I could have been the difference between getting through this thing, and not getting through it. Giving up, and not giving up.
And we really believe it’s because our doctors have taken the time to help us build a relationship with them. Knowing how busy they are, and how many patients they have, we found the world of oncologists and the nurses and the others, very compassionate people. And it’s worth that time to build that relationship whether it’s your ongoing doctor, or one that you go out of town for a second opinion with, those relationships mean everything. And the doctors who are willing to take their time, when it’s not really on the clock and help their patients, they are doing tons and tons of good for the world that we live in.
So, we’ve got some other techniques, but those are the things that really stand out to me in terms of managing in this area.
That’s wonderful, Jim, and it circles right back to you, Dr. LeBlanc, when you introduced yourself and you told us that there is just more than coming to the doctor, and reading the chart, and giving the blood results. It’s definitely very impactful. And what you spoke about earlier about how you bring in the palliative care and the emotional care. And on that note, I know this is a little cross-over, but can certainly add to anxiety and depression on everything that we’ve talked about, Dr. LeBlanc, but do you encounter, through your care and conversations with clients, their anxiety over the financial part of care? Is that something that you hear often?
Absolutely. The idea of financial toxicity, sort of like other kinds of systemic toxicities you would have from chemotherapy, it’s just as real as a patient who gets neuropathy from their chemo. And in some cases, may be more crippling.
One of my colleagues here at Duke is a leading researcher in this area, and he’s taught me a lot about this, and unfortunately, I’ve seen it a lot in my clinic. And as we are fortunate to have a number of new therapies available for AML and other diseases like multiple myeloma, the unfortunate aspect of this issue is that many of them are pills, and may states do not have parity laws in place that require insurers to treat pills the same way as they do chemo therapy that you would get in an infusion suite.
North Carolina is unfortunately one of those, where I practice, where we still don’t have a law.
And that’s sometimes means I’m talking to a patient about an exciting new therapy, and then I find out that their monthly copay is going to be $3,000.00, and who can afford that? That’s just the copay amount for the patient just for one month of medication. This is, unfortunately, happening a lot. And thankfully, there are many resources that we can engage to help patients with these issues, but it is an increasing problem as medications are more sophisticated, they also have gotten much more expensive.
Yeah, and we hear this so often. And, of course, Michelle, I’m sure you’re hearing this, as well. And your department can direct people to the appropriate resources?
Yes. It’s something we hear every day, unfortunately. Like Dr. LeBlanc was saying, we’ve got all these great new treatments now, but so many of them are oral, and a lot of patients, if they’re on Medicaid/Medicare especially, their copay is extremely high.
We do have copay assistance through LLS, we will also refer people onto other organizations that have assistance if we know of them. So, anywhere we can get people to get the help. We also do a lot of advocacy on that end, and we’re in Washington a lot and we’re sharing a lot of patient stories, and we’re trying to get the word out there that we shouldn’t have these barricades to treatment. We do all this research, we find all these wonderful treatments, and then people can’t have access to them. And that shouldn’t be.
So, that’s one of the things, along with the research and the patient assistance we have, we also focus on the advocacy part, and making sure that the oral parity bills are passed in hopefully every state. And that things are little bit more on an even plane, so people can use these wonderful treatments that are coming out.
Wonderful. And Michelle just hit on treatments, so Dr. LeBlanc; I would like to now go back to you.
And could you tell us, in regard to treatments, advances in clinical trails for AML, what’s happening in research and should patients be hopeful?
Yeah, it’s really a very tremendous time in cancer care and in biomedicine in general. As I mentioned earlier, we had, if I remember correctly, eight new drugs approved for AML in the last two years. And we had been mostly using the same treatment for patients for the prior 40 years. The seven plus three induction regiment was developed in the ’60s or early ’70s, and mostly that’s the same regiment or related ones to it that we’ve been giving to people when we give them high-dose therapies for this disease.
Other things have improved during that time, as well, that are really improving outcomes, so we have much better supportive care medicines. We have growth factor injections that work better. We have better antibiotics. We have anti-fungal medicines that work a lot better.
So, when you add those developments, even to the old chemotherapy, that had improved outcomes prior to this spirt of approvals in the last two years, but now, especially, we really are in a new ear of how we treat AML. And now, we need to actually molecularly and genetically profile each individual patient’s leukemia, so that we can best know how to treat their disease because at this point, we have several testable targets that we might then prescribe a medication to address in an individual person’s case of AML. So, it’s getting more complicated, at yet at the same time, there are many more options, and it really is a time to be very hopeful about how things are going.
That sounds so encouraging. And Michelle, going back to you. How can you lead clients and their care givers to these clinical trials that are on the horizon?
And can you talk a little bit about what that process looks like?
Sure. If someone reaches out the IRC, we do have a group of nurses who do clinical trial searches specifically for blood cancers. And it’s not just, we’re gonna hand you a list as say, “Here, go talk to your doctor.” They will help through the process. So, they’ll really in-depth dig, and try to find trials that might be an option. Have you go back to your doctor, but then walk through it with you to help you get into that trial.
Because there’s so much research now, it’s wonderful, but it’s also really overwhelming if you try to do it by yourself. And a lot of them are more focused trials now, so you have to know what kind of mutations you have and that kind of thing. So, it’s a partnership where there’s a form that you would need to fill out for us to have that information, and then we help you walk through that process of, is there a trial that’s out there for you; is it something that’s appropriate for you, along with your doctor. And then, how do we help you make sure that you can get through the whole process.
Wonderful. What a fantastic resource. Thank you.
So, I would like to take a few questions that we’ve received, and, Jim, I’d like to hear your feedback on this one. And the viewer asked, “People keep asking me how I’m doing, and it just makes me worry more.” Do you have any advice, Jim, for people to tell those that love them and just want to help them that all these questions are causing anxiety, what would you suggest, Jim?
Yeah, a couple things that I’ve found useful. I explain to them I just got done with playing nine holes of golf, or I just got done exercising, and I’m quick turn it back and say, “How are you doing?” and try to get as much out of the other person, so that they understand that I’m comfortable in my skin, and I’m not stressing out or how things are going.
But it’s easy for people to understand that, hey, this guy’s got an incurable deadly blood cancer, or two, and we worry about him. So, I try to just loosen up, and turn it back on them, and hopefully they get more reassurance that, hey, the guy’s not stressing out, he’s okay. But you know, once you do all you can do, the rest of it is just fate, luck, whatever. So, that’s what we try to do.
I love that response. And people mean well, but putting the focus back on them is just fabulous. That’s really great, thank you, Jim.
Oh, you’re welcome.
And Dr. LeBlanc, we have a question from Shannon from Boston, and her questions is, “How can I manage the daily stress of like with AML? Are there proven strategies to cope with the stress?” So, we did talk about a few things earlier, but what advice would you give Shannon?
Yeah, I’m not aware of proven strategies specifically for AML, which is part of where we all struggle. Not knowing what to do and how to best support individual patients. And as I mentioned earlier, every individual is quite different. but I usually recommend meeting with a professional to talk about it. And some people are opposed to that and they don’t want to do that, but more people are at least open to the idea. And so, Shannon, if you’re somebody who’s open to that idea, I would actually encourage you to seek out a specialist in palliative medicine.
And many people misunderstand what that means. So, I want to just take a moment to explain why I would think that’d be helpful and what the evidence shows. So, clinicians who are trained in palliative medicine are basically experts on well-being.
They know how to address symptoms, they know how to help with quality of life maintenance, and they know how to help people cope with difficult diagnoses and serious illnesses like cancers. Regardless of the expected outcome. So, they can be helpful if we’re aiming at cure and we think there’s a really good chance of that, and they can be helpful in cases where we know that’s not gonna happen, and anywhere in between.
So, one of the misconceptions is that they can only be helpful when people are dying, but actually, what we found in a lot of research is that when you add a palliative care specialist to the cancer care team, even from the point of diagnosis, that patients feel better, and they do better, and even live longer. Several studies, now, have shown that in a recent medi-analysis that we publish, for example.
So, part of the mechanism by which palliative care specialists help patients feel better and live better is not only by addressing physical symptoms, but also at addressing these difficult emotional and existential kinds of issues.
Helping with coping. How do I get through the day; how do I live with the fear that this diagnosis instills in me; how do I enjoy life? Those kinds of questions are very common. And palliative care specialists are often very equipped at helping. Or even psychologists would be another great resource, where this is a person you’re going to see where the entire focus of the visit on those issues, so that they definitely don’t get pushed to the last 30 seconds of the visit when the doctor has their hand on the door knob and they’re trying to get out to the next patient.
Wow, and I love what you said that your study shows that people who do seek out the palliative care will live longer. And seeing a counsellor or psychologist too, both of those are just amazing suggestions. Thank you.
We have one last question from Doug from Boise, and, Michelle, I’m going to direct this question to you.
Doug says, he doesn’t know how to find a support group. So, where does he start? Could you give us some feedback?
Sure. He can start by calling us. We can try to find out if there’s one locally for him. There’s also access to the online chat, which meets in the evening and he can talk with people that way. There’s a lot of different options. So, there’s the traditional support groups that you go to, but there’s other ways of getting support, as well. So, that’s a good way to start. It can be very overwhelming to try to find one. The other thing you can do is if you’re being treated at a hospital, talk with the hospital social worker because they’re usually pretty knowledgeable about what supports are in the area. But I would say those would be the two good places to start.
That’s wonderful. And Michelle, can you give us your specific phone number and email where people can reach you and your department?
Sure. So, the number to the Information Resource Center, we’re available Monday through Friday, 9:00 a.m. to 9:00 p.m. is 1-800-955-4572. The other way to access us is through the website, which is LLS, short for Leukemia Lymphoma Society, much easier to type, .org. When you get on there, there’s a way to reach the information resource center either by email, by chat, or the phone number will be there, as well, if you need it. But that’s really the best way to reach us.
That’s wonderful. And we just got one last question, and we have enough time for it. And Jim, I’m wondering if you have some advice about this question. And it is, “My partner’s often struggling deeply with the diagnosis. I don’t know the right words to say to help him feel better.” Could you give some advice to this topic, Jim?
Yes. The weekend I was diagnosed, the very qualified oncologist rightly said in response to my question, “How long do you think I’ll live?” He said, “At most you’ll live three years.” And so, I struggled, my wife struggled, I was in my early 40’s, that weekend was hell. And here’s what got me out of my funk and got us back to problem solving and putting this thing on our agenda to do all we can. I looked back at my own life, here I am in my 40’s, two boys, I’ve been healthy most all my life. And I thought of, there was a real setback, medically I had, a bad injury playing sports when I was in high school, and to me as a high school kid, that was the end of my life. Sport was gone; a lot of recuperation.
And as I looked back on that with this cancer diagnosis, I said, “You know what, as tough as that was at the time, as devastating as that was, a lot of good things happened because of that setback.” Real things. Like it got me studying a lot more in college, I got a nice job as a result of it. Lots of good things happened. It caused me to overcome things, and I said to myself and my wife, “Hey, we’re gonna make this deadly cancer diagnosis the same thing.” And like all of us I think have been saying: every case is unique.
So, I don’t get bummed out when people give me their prognosis or whatever, or I read something that’s not good. My case is different than everybody else, and we can look at it that way. And in the end, this can happen to any of us. So, it got me off my back, it got us in there fighting, and that’s the way I look at it.
That is wonderful advice, and what I hear you saying is that, really, with your care partner, and your family, and I’ve heard this from Dr. LeBlanc and Michelle, as well, and, of course, Jim, that you’re a team. And finding that way to survive this as a team, so that’s great advice, Jim. Thank you.
So, I do want to thank the Patient Empowerment Network for this really impactful program today. I’d also like to thank The Leukemia and Lymphoma Society for partnering with us on this webinar. And I would like to thank our guests as we come to a close to this program. So, Dr. Thomas LeBlanc from the Duke caner institute, thank you so much for taking the time today and sharing the real benefits of the focus on the palliative care.
And Michelle Rajotte, from The Leukemia and Lymphoma Society. Your contribution has been wonderful, the resources that your department does provide. And Jim Bond, it’s just been so great hearing from you and your very long journey with AML, and what you’re dealing with, and how you have made the best life possible, and all of your dedication to advocacy. So, thank you so much for joining us today.
And if our viewers have missed anything or just want to re-watch the webinar, a replay will be available in the coming weeks. Thank you for joining us, I’m Beth Probert, and I look forward with meeting with the AML community again. Thank you.
We thank Celgene Corporation, Daiichi Sankyo, Genentech, Helsinn, and Novartis for their support.
https://powerfulpatients.org/pen/wp-content/uploads/Overcoming-Anxiety.png600600Kara Rayburnhttps://www.powerfulpatients.org/pen/wp-content/uploads/New-Logo-300x126.pngKara Rayburn2019-02-05 18:24:022019-09-02 12:28:42Coping With the Emotional Side Effects of AML
Air quality is an important part of living a healthy life, and studies show that patients with certain forms of cancer can face more difficult odds during recovery if they live in areas with heavy air pollution. Patients who live in wide open, green spaces can also be affected, however, as homes have been known to contain, sometimes, even more pollutants than the air outside. And, you don’t even have to be diagnosed with lung cancer in order to feel affected by mold spores and other pollutants that are circulating throughout the air in a home or recovery facility. Learning how to combat at-home air pollutants and keep other bacteria at bay will help ensure a quicker, easier recovery.
Special Attention on Avoiding Infection
When recovering from cancer treatment, it’s especially important for patients to avoid contact with other people or any sort of allergen that could cause infection. This is why hospital rooms are kept so clean, in order to allow your immune system to build itself back up over time. Most recovery facilities and rooms will feature a HEPA air purifier that has the ability to catch and destroy any virus, bacteria or mold in the air. Air filters, therefore, are a great tool when to facilitate quick recovery, especially for patients diagnosed with upper respiratory types of cancer. High-quality filters can clean the average-sized hospital time up to 12 times per hour. If you’re going to invest in an air filter or purifier for your home, it’s important to look for one with a HEPA filter as it will help capture microscopic dust and allergens that can cause harm even after your treatment and recovery are over.
Keeping Home Clean During Recovery
Once you’ve been discharged from a hospital or care facility, it’s extremely important to keep your home very clean, for much of the same reasons of avoiding infection or viruses. While this includes washing bedding and clothing in hot water nearly daily and cleaning all hard surfaces with disinfectants, it also means managing the humidity and mold in your home. Seeing as humidity is the cause of a lot of home health problems, it’s a good idea to first invest in a portable humidity meter to stay on top of the levels. Then, you’ll want to ensure that the humidity levels never rise above about 60%. Doing so can permit mold, which can cause autoimmunity, fatigue, nausea, and even asthma, all of which are things you’ll want to avoid especially if you’re recovering from cancer treatment.
Clean Air Equals Peace of Mind
The great news is that there’s currently no scientific evidence to back the idea that exposure to mold spores can lead to cancer. The real issue at hand is purifying and dehumidifying the air to ensure that no other types of bacteria or virus can enter into your lungs and compromise your immune system during such a delicate recovery period. Clean air will ensure you can breath easily and relax as you embark on the journey that is recovery, and that peace of mind will mean everything once you’re back at home and ready to just rest.
https://powerfulpatients.org/pen/wp-content/uploads/dazzle.png600600PEN Editorial Staffhttps://www.powerfulpatients.org/pen/wp-content/uploads/New-Logo-300x126.pngPEN Editorial Staff2019-01-29 17:33:052019-09-02 12:32:05The Importance of Clean Air for Recovering Cancer Patients
In this three-part series, I’ve been exploring different aspects of returning (or continuing) to work after a cancer diagnosis. So far I’ve tackled issues from preparing to return to work and handling your workload, to dealing with problems such as fatigue and concentration. In the final part of this series, I’m turning my attention to finding a new job after cancer treatment has ended.
There are a number of reasons why you might be looking for a new job after cancer. Perhaps you crave a fresh start, somewhere where you’re not known as the co-worker with cancer. Or perhaps you need more work flexibility – such as the option to work part-time – but your current employer isn’t in a position to make the adjustments you need. Or maybe you want to change career, switching direction towards something more meaningful and fulfilling.
Whether you’re looking for a new job or considering a new career direction, this month’s article has plenty of practical advice to help you.
1. Get Clarity on Your Direction
A good place to start is by getting clear on your new goals, financial needs and current skills and abilities. Grab a pen and some paper and take some time thinking about your responses to the following questions.
What are my core skills and strengths? Am I using them to their fullest in my current (or previous) job? Which skills and interests from my previous jobs will transfer over to a new position or field?
What new insights or skills have I gained through cancer? Do I want to be able to use these in my job?
Have my career goals changed? Do I want to work in a similar job but with more work-life balance? Or do I want to try something new?
Do I have the required skills for a new career interest? Will I need to retrain? How will this impact me financially?
Do I have the stamina to take on something new? Do I need to consider the impact of any long term side-effects from treatment on my ability to work?
2. Update Your Resume
The next step is to get your resume in order. If it’s been several years since you last applied for a job, you may need to take into account that resume writing has changed quite a bit in the past decade. For example, the chronologically based resume (listing job titles, companies and dates in chronological order), while still popular, is giving way to a more dynamic skills-based one. This is good news if you want to work around a gap in your employment history. For a skills-based resume, you will create a relevant summary of your skills, career accomplishments and career goals and position this directly below your name. You should aim to provide an example of an area of accomplishment related to each specific skill.
Pro Tip: When it comes to including employment dates, don’t include months in the dates, only years. This helps narrow the work gaps.
3. Develop Your Network
Make a list of everyone you know who is currently working in your industry or the industry you’d like to be in. Take a strategic approach by setting achievable goals for the number of people you want to connect with every week. Reach out to them and tell them about your plans to find new work or change career direction. Ask them to keep you updated of any new job openings and leads. Hiring managers are more willing to consider you for an interview after a personal recommendation.
Pro Tip: When it comes to building your professional network there’s no better tool than LinkedIn. LinkedIn multiplies your existing personal and professional networks by making the connections of your connections available to you at the touch of a digital finger.
4. Optimize Your LinkedIn Profile
Your LinkedIn profile is the cornerstone of your professional brand online. While you may already have a profile on the platform, is it optimized for a job search? LinkedIn profile optimization simply means that your LinkedIn profile is fully updated to maximize your visibility on the platform. Everything you do on LinkedIn begins with your profile. Yet many professionals still treat their LinkedIn profile as little more than a place to park their resume and promptly forget about it.
You won’t be effective at LinkedIn networking if your profile doesn’t entice people to get to know you. Here are some quick tips to optimize your profile (for a step-by-step guide with more detailed information, click here).
Make your first visual impression count by displaying a high-quality professional photo.
Adding a background image directly behind your photo will help brand your profile. Think of it as your professional billboard.
Create a strong professional headline. This is a critical step because your professional headline is not just highly visible on LinkedIn, it’s also searchable by Google.
Nurture your LinkedIn relationships through regular engagement. This is not about making large numbers of contacts; rather, it’s about making meaningful connections.
Join industry relevant groups. Job openings are often posted by recruiters in industry groups. You will find groups by clicking on Interests > Groups from your profile or searching keywords to identify groups with interests similar to yours.
Become an active and engaged user. When you log into LinkedIn, notice each time who shows up in your home feed. Most likely you will see the same few people. These individuals are getting more visibility because they are more active. If you make the commitment to become more active in your network, you will increase your visibility
Be strategic about when you’re active on LinkedIn. As a general rule, LinkedIn users are most active right before and after work (7–8 am and 5– 6 pm), as well as during lunch time.
Pro Tip: Don’t be afraid to use social media to your advantage: if you know the hiring manager’s or recruiter’s name, add them on LinkedIn.
5. Mind Your Digital Footprint
Employers are increasingly carrying out social media checks on prospective employees. Anticipate this by googling yourself to see what turns up. Here is where a professional profile on LinkedIn can be enormously helpful to present the best impression. Because of the way Google’s search algorithm works, an optimized LinkedIn profile will frequently show up in the first few places of a Google search for your name.
While LinkedIn is an asset, other forms of social media may harm your search for a new job. Sharing personal information about your treatment through a blog, Instagram, Twitter or Facebook is publicly searchable by potential employers. Many of us turn to social media sites and blogs to keep our families and friends updated on our progress and to seek support during cancer treatment. But when your focus returns to work, you may not want your employer or prospective employer to know of your cancer history.
Pro Tip: Take some proactive steps to protect your privacy online. Set privacy settings on things like Facebook so that nothing can be seen by people who aren’t “friends” (including pages you are a fan of – an often forgotten detail). Delete what you can from your postings on Facebook and other media that talk about your cancer. Set up a Google Alert to monitor mentions for your name.
6. Handling the Job Interview
A job interview is stressful at the best of times, but when you’re anxious about handling the question of cancer, it’s doubly so. Sixty-one percent of cancer survivors looking for a job said they fear disclosing their cancer diagnosis will negatively affect their chances of getting hired.
Rehearsing what you plan on saying ahead of time greatly reduces any anxiety you may feel. The more prepared you are before the interview, the more relaxed and at ease you will appear during the interview. Draw up a list of potential questions and practice your answers. Accentuate the positive. For now, put aside your worries about how to explain the gap in your resume and spend some time focusing on why you are the right person for the specific job that you are applying for. List at least ten great qualities and skills you have and ask friends and family to help you brainstorm more. Try to find a willing friend or family member who will role-play the interview with you.
Remember you don’t have to disclose your cancer history either on your application or during an interview. The Americans with Disabilities Act prohibits employers from asking job applicants about a disability (this includes cancer) before offering them the job. However, you may decide you want to be upfront about a work-related absence. If this is the case, you can deal with it by briefly explaining you had some time off work for a health (or family) related reason, but that’s behind you and you’re now looking forward to re-joining the workforce. Keep it simple, stick to one sentence or two and don’t be tempted to digress. Then switch the direction of the questioning back to your skills and qualifications for the job.
Pro Tip: Do your research before going into an interview. By showing off your knowledge of both the company and the industry, you are conveying to the interviewer that you are still up-to-date even if you have been absent from work for a period of time.
7. Considering a Career Change
Cancer changes your outlook on life. Alongside an increased awareness of the preciousness of time, you may also have decreased tolerance for spending time on meaningless tasks. Many cancer survivors, my own self included, have felt a calling for more meaningful work after their treatment has ended. I’d like to finish this back-to-work series by sharing the stories of three such people who have used their cancer experience as a way to help others and forged new careers in the process.
Jennifer Elliott was a pre-kindergarten to elementary school age music teacher before being diagnosed with bilateral synchronous breast cancer in 2014. Since her diagnosis, her focus has shifted to patient advocacy. “My advocacy began when I realized that my access to industry trained people, thanks to where I live and who my friends are, was impacting my care in a positive way,” said Jennifer. “That made me angry, because we should all have equal access to quality care. I’m now applying to graduate degree programs in public policy because, as I’m advocating for breast cancer survivors I’ve learned that all the things I’m advocating for are impacted or dictated by policy and if I want to have the broadest impact I need some policy skills and training.”
Terri Coutee was focused on a life-long dream of completing a Master’s program in teacher leadership when she received news of her second breast cancer diagnosis. “The diagnosis was the catalyst to evaluate my professional career,” explained Terri. “I had to focus on my treatment and major surgery over a period of seven months. This gave me time to re-evaluate, research, and refocus. I learned less than 25% of women and men were not being given their options for breast reconstruction after mastectomy. As a life-long educator, I realized I could educate those affected by breast cancer and learn from my experience. A blog about my successful breast reconstruction experience led to opening a non-profit Foundation to educate a global audience through social media, attending medical conferences, and making as many personal connections as I could to assist others through their own journey. The need is endless because we haven’t found a cure for breast cancer, yet. Until we do, I will continue to educate and provide resources for the very best medical care for others faced with mastectomy.”
At the age of 51, Chris Lewis wasn’t looking for a career change. “I was working for myself and was at the peak of my earning power,” he said. “Then a poor prognosis of incurable blood cancer and my life was turned upside down. I have since had many years of complex treatment meaning I could not return to employment of any description. As my survivorship moved from months to years I needed a purpose. My body was in bad shape but I still had a business mind.”
Unhappy at the poor resources and help for people living with cancer, Chris took to the Internet to voice his displeasure, leading to him running his own successful website Chris’s Cancer Community. “This led to me becoming a global expert speaker and writer”, said Chris. “I am self-taught in social media and an award winning writer. As a patient advocate I speak at many high profile conferences. Cancer has taken a lot from me, but has shown me a new way of life I would never have experienced. The big bonus is the incredible people I get to meet and talk to daily. It seems even at my age I have found a new career!”
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/Returning-To-Work-After-Cancer-Treatment-2.png600600Marie Ennis-O'Connorhttps://www.powerfulpatients.org/pen/wp-content/uploads/New-Logo-300x126.pngMarie Ennis-O'Connor2019-01-23 17:02:362019-09-02 12:34:32Tips on Finding a New Job or Changing Career after Cancer Treatment
As 2019 begins, we would like to take a moment to highlight a few of our most popular posts from 2018 and to thank the people who contributed to the popularity of these posts. We cannot thank the authors and organizations enough that have contributed to make 2018 one for the books, such as Marie Ennis-O’Connor, Casey Quinlan, and Jennifer Lessinger. Your efforts to Patient Empowerment Network are greatly appreciated!
Patient advocacy involves sharing your unique knowledge and experience to raise awareness and influence people to create a desired change. Marie Ennis-O’Connor shows you the steps you should take to create a compelling message to get your key issues across.
The average adult requires at least 7 hours or more of sleep each night to maintain general good health and well-being, but that can be a challenge for cancer patients. Here are some tips to improve your sleep.
Marie Ennis-O’Connor discusses the need to find ways to engage patients meaningfully in healthcare design and then shares 6 guiding principles you can turn to when you are next called upon to take on a patient advisory role.
Breast Cancer Awareness Month is famously associated with pink everything – ribbons, clothing, yogurt, you name it! In her latest blog, Marie Ennis-O’Connor goes beyond pink and shares lessons learned from fellow breast cancer patients.
In this second part of a three-part series, Marie Ennis-O’Connor discusses common concerns on returning to work after a cancer diagnosis.
https://powerfulpatients.org/pen/wp-content/uploads/BEST-OF-2018.png600600Kara Rayburnhttps://www.powerfulpatients.org/pen/wp-content/uploads/New-Logo-300x126.pngKara Rayburn2019-01-02 21:39:232019-09-02 12:34:36The Best of 2018
Self-care is essential for all of us; it’s something that allows you to take a mental health break while also making sure your body is in good shape. After a period of stress or anxiety, you need a little time to heal and get yourself back to a good place. This is especially true for cancer survivors, who battle stress, physical pain, anxiety, depression, and worry every day. Cancer comes in many different forms and affects the body and mind in different ways, meaning no two people will handle it the same way. What works for you when it comes to coping may not work for someone else, and vice versa.
Fortunately, there are many different ways you can learn to cope with your feelings and take a time-out. From daily exercise to learning to listen to your body’s cues, self-care involves a variety of activities for you to choose from. You may choose to practice self-care alone or with a close friend; you can do it from the comfort of your own home or at the gym. Whatever makes you feel good in a healthy way is classified as self-care.
Keep reading for some great tips on how to practice self-care as a cancer survivor.
Take Your Medication as Directed
Most cancer survivors need medication to help with pain, nausea, and other symptoms that will make daily life a little easier. Some take several different medications every day, and it’s imperative to keep track of these and make sure you’re taking them correctly. You might use an app on your phone to help you remember what time you need to take specific pills, or invest in a sorter that will keep all your medicines measured out for each day.
If you feel that the dosage on a medication isn’t right, talk to your doctor immediately rather than attempting to change the dosage yourself or discontinuing use. Because many of these can be habit-forming, using them correctly is important not just in maintaining your health, but because opioids can be highly addictive and can cause many more issues than they treat if used incorrectly.
If you’re concerned about using prescription medication like opioids to treat your pain and nausea, it’s worth talking to your doctor about the option of CBD. It’s a natural, non-narcotic and non-hallucinogenic treatment that provides relief for many of cancer’s most troubling side effects, such as muscle pain, nausea and anxiety. As with any treatment, be sure to consult your physician before giving it a try.
Sometimes, medication or chemotherapy can interfere with appetite, making it extra important to make sure you’re eating well when you are hungry. Try to eat small snacks throughout the day made up of whole, unprocessed foods, and remember to stay hydrated. Talk to your doctor about the best foods for your body’s needs, and consider hitting up the farmers market for fresh produce as often as you can.
Make Your Needs a Priority
Many individuals who are faced with a battle against cancer find that they are so focused on the people around them that they rarely take time out for their own needs. You may be worried about how your family will pay for treatment or how your illness is affecting your children. While these are valid concerns, one of the best ways to help ease your mind is to take a little time for yourself. Go for a short hike, sit down with a good book, or lie in bed and listen to your favorite music. Learning how to slow down and reset your mind isn’t always easy, but it’s necessary.
Try Something New
As long as you have the energy for it, now is the perfect time to try something new. Finding something that is enjoyable and allows you to shake off worry or anxiety for a while is a great way to take care of yourself. Whether you want to learn a new language or travel to a place you’ve never been, don’t put it off. Just make sure your health won’t be affected negatively, and talk to your doctor before making any major plans.
Taking care of yourself can be a big job, so remember that there are only so many things you can do in a day. You might try yoga and meditation during this time to learn how to practice mindfulness and focus on the present; this can help you cope with stress in the moment so that you can turn your mind to more important things.
https://powerfulpatients.org/pen/wp-content/uploads/Self-care.png600600Dana Brownhttps://www.powerfulpatients.org/pen/wp-content/uploads/New-Logo-300x126.pngDana Brown2018-11-27 17:59:492019-09-02 12:28:35Self-Care During Illness: Tips for Cancer Survivors
Four Chronic Lymphocytic Leukemia (CLL) patients got together to share their story and advice on dealing with a mid-life diagnosis, and how that can affect your personal and professional life.
Hi there. Thank you for joining our Patient Cafe today sponsored by the Patient Empowerment Network. I’m Esther Schorr, and today I’m meeting virtually with a group of CLL patients, chronic lymphocytic leukemia, who are all facing this diagnosis during their middle years. So of course there’s no really good time to be diagnosed with something serious or diagnosed at all, and it’s never easy and it’s never welcome, but in our middle years the career ball, your personal life direction, the people that you indirect with, the relationships you have are already pretty well in progress and a diagnosis can feel as though personal and professional life kind of had a monkey wrench thrown into it and that your plans for life could be derailed.
Our guests today are going to share their stories and advice about how they’ve been able to deal with a midlife diagnosis. So just before we start I want you to know that this conversation is never, would not be a replacement for medical care, medical advice. Each patient’s situation is unique, so I really encourage you to consult your own doctor, your own medical team for the treatment that’s right for you.
So first of all I just wanted to tell you a little bit of where I fit into this conversation. My husband, Andrew, who you’re going to meet in a second, was diagnosed with CLL in his mid-forties, and at the time we had two small children.
Also, we were in the middle of growing a fledgling business that then became what we do now in educating patients. And we were devastated. It was scary. We didn’t know what the complications long term were, we even wanted to have a third child at the time, and certainly, like most people, we didn’t know anything about CLL. We didn’t know. And the word “leukemia” was very frightening. We were very lucky at the time. We had supportive family and friends, and we found great medical care through networking with other people on the internet, through online support groups, etc. And ultimately Andrew got through a clinical trial, went into it, went through the trial and had a long remission, and we’re very, very thankful for that.
As a care partner, I will tell you it’s taken years of ups and downs for me emotionally to come to terms with the fact that we can’t really live our life based on what‑ifs.
And we’ve gone on together with our friends, our family, and we just live our life. We now live in southern California near the beach with our dog, and we have three grown kids who are very supportive, and‑‑but we’ve learned a lot along the way. And so I’m hoping that this discussion will help those of you that may be in similar circumstance to kind of come to a place where you can move on with your life and feel empowered. Is that’s my story. I want to have each of our guests introduce themselves. So why don’t start. Jeff, Jeff Folloder, why don’t you start.
Hi. I’m Jeff Folloder from Katy, Texas, which is just outside of Houston. I am a CLL patient, and I am also a Patient Power advocate, champion, evangelist, pick one of the terms, whichever one you’re comfortable with. I was diagnosed at 46 years of age.
I absolutely, positively was not expecting to hear my doctor say something’s wrong and you need to go see a specialist. Walked into the specialist’s office, saw a bunch of old, sick people in there, said this isn’t me, and the next day I was told, yes, it is. So my diagnosis did absolutely come as something of a huge shock. It was like a sucker punch in the gut, and it took me a bit of time to figure out has comes next.
I was very fortunate to get connected with some folks here in Houston who got me enrolled in a clinical trial after two, two and a half years of watch and wait. I got six and a half years of rock solid remission out of my clinical trial. This past July I have recently relapsed, and I’m looking at it right now quite frankly as no big deal.
I’ll get treated when it’s time to get treated. In the meantime, I’m driving all over the country, I’m doing all kinds of things. I’m living life to the fullest, and it’s actually okay to take a nap.
Thanks, Jeff, that’s perfect, and we’ll talk more about that journey for you in a minute.
Let’s try the other person, Andrew, and then we’ll hit Michelle and Jeff.
Esther, thank you for hosting this program. So you recall vividly I had a routine blood test at age 45, and the doctor initially said when he tested my blood, oh, you’re probably fine because I had been getting some nosebleeds, and then he called me, and he said you’re not fine. What is it? Leukemia. What is leukemia? I wasn’t even sure it was a cancer. And I also didn’t understand the difference between acute leukemia and chronic leukemia. And so what knowing I’d heard somewhat about acute leukemia then, Esther, you and I, remember, we walked in the park in a sunny spring afternoon near Seattle, and I thought I was dead. And I was saying at 45, we have two kids, hopefully you’ll be well provided for, and I had life insurance. Is that it?
Well, fortunately, it hasn’t worked out that way, and I got a long remission, pretty long, Jeff, 17 years, actually and then needed CLL treatment again many months ago, and that’s worked well. So just like what Jeff said, knocking it back, going on with my life. We had a third child, but when I was first diagnosed I thought it was over, but now looking back I know it was really just the beginning, but maybe seeing life a little differently but living.
You thank you. Thank you for that, Andrew. Michelle, tell us a little bit about you.
Hi. I’m Michele Nadeem-Baker, and I’m a Patient Power advocate as well and a Patient Power patient reporter. And I have to say, as Jeff had mentioned, I was in shock, absolute shock, no awe, but in shock when I was told that I had CLL. My PCP like everyone else’s had said that my white blood counts were a bit off, told me to see a hematologist, and I was very naive not realizing hematologists generally went along with oncology.
Went to the local medical center when I lived in Miami and was not told I had CLL, and then I was called back in for when some other test results came in, the flow cytometry came in, which I now know but at the time had no clue what that meant, had no clue what the doctor was talking about. He didn’t even‑‑he said I had the C word. He didn’t even say cancer. And then he said CLL. I had to ask what that meant.
And that’s why I’ve been such an advocate for communicating better for patients because I was a bit dumbfounded as well as in shock. He had no information to give me, and I have since tried to learn a lot and become an advocate for other patients. Andrew is the first person I met with CLL. I reached right out to him, but it was very tough.
I had been married at that point for only two years to my now husband, and it was a real, real shock. My career went into a tumble, a turmoil, and it got put on hold for a while. So I was in watch and wait for about three years. In that time I moved back to Boston, so I could be seen at Dana‑Farber. And as both Jeff and Andrew said, life does go on. You just‑‑you have to get into kind of a new step and a new rhythm, but life does go on thankfully and thanks to all the research that’s been going on.
And I’m still on a clinical trial. Still in remission. Fingers crossed that will continue. And I’m happy to chat about anything that will help.
Right. We’ll have a lot to talk about, I think. Thank you, Michelle. And the other Jeff, tell us a little bit about where you’re from and where you’re at now.
Will do, Esther. Thanks again for having me. Really, my story follows much of the same path. Diagnosed at a fairly young age, 38 years old. I discovered a small lymph node in my neck while I was washing up one Sunday night back in late 2012 and got it checked out and couple months later high white blood cell count, and another high white blood cell count when I was tested again, and I was diagnosed. And really from there I just buried myself in just doing all the research and all the data gathering that I could.
Maybe about three, four months after diagnosis I discovered Patient Power. I found Andrew. I gradually started corresponding with him. From that point on, the next four and a half years I was in watch and wait until probably late 2016, early 2017. Reached out to Andrew again at that point. We had a conversation about FCR, which my doctors here in Atlanta had been talking to me about. Decided to go to MD Anderson after seeing some of the videos on Patient Power of Dr. Keating, Dr. Thompson. Went there to see actually Dr. Thompson who had mentioned ibrutinib and some of the other targeted therapies that had been just approved for frontline. And came back to Atlanta and my doctor and I kind of came to the conclusion that maybe starting with one of the targeted therapies was probably best me being unmutated.
And started ibrutinib March 2017 and lymph nodes went away after a week and kind of been in remission pretty much ever since and everything’s going well.
Thank you, Jeff. And all of you, there are some recurrent themes here that we’ll talk about, but obviously this whole idea of coming into the middle of your life when a lot of things were already in play was something that you had to pretty quickly say, okay, what am I dealing with and then figure out how do you continue with what you were already doing and how does it fit in.
So I want to dig into that a little bit more, and I’d like to start with you, Michelle. And tell me if I’m wrong, but my understanding is that when you were first diagnosed you were really in a pretty high‑level executive position in PR and communications, and how did you cope with the diagnosis in the middle of a very busy professional life?
It was not easy, and that part still isn’t easy. I’ve been trying to still come to terms years later with that. I was at a height of my career in a dream job, and I knew that I could no longer stay in that job because it meant staying in Florida, and I needed to move back home where my family was and my husband was. We had a long‑distance marriage because of career. It made me realize what’s really important in life, and that’s to be with family, but I was able to then continue using parts of my career in other ways and to help, as Andrew did. You’re doing very similar things yet now you’re doing it to help patients, and that’s what I’ve been trying to do. You’re a great mentor, Andrew. And so it, yes, it was very difficult when it comes in terms of that and as well as income and being used to being a high income earner and then not having that.
So can you share how you made that transition? It sounds like you moved closer to family.
And career‑wise what helped you make that transition?
I had to give up my job and my career. And I was well known in Florida, and I moved back up to Boston. I needed to remake connections from when I lived and worked here. And I’ve been consulting ever since versus within a company and a full‑time job. So trying to use what I do best, just communicate and go and help others. And what’s been happening is I found that it’s been mostly in life sciences and related fields.
Okay. Thank you. You know, you mentioned Andrew. Andrew, did you want to speak a little bit about that transition that you had to make because we were at the time sort of building‑‑well, sort of. We were building a business and a family at the same time.
Can you share a little bit about what it took for you to make the change that you did?
Sure. Well, I think‑‑we were fortunate. We were already working in health communications. Michelle has sort of made that transition, and Jeff too actually is spending a lot of time doing that. So you kind of‑‑for us, you know, Esther, you and I think accelerated in what we were doing. I think for Jeff and Michelle they’ve sort of joined in where you can leverage what you’re learning as a patient to help others, and that’s very satisfying. And fortunately now with the internet we can to some degree do it on our schedule.
So sometime we’re tired. Sometime we’re distracted‑‑not distracted, that’s not fair, but we have doctor visits. We have bone marrow biopsies. We have other things. I get IVIG, monthly infusions. So how do you juggle all that?
And I think we learned to do that. At least that’s what I’ve done, and I think it’s been satisfying that we can communicate with others, and it’s part of who we are. Never wanted the diagnosis of CLL, no, no, no, but if you have it how can you go forward and do that? And I know both Jeffs are involved in helping other patients as Michelle is too, so that’s part of it.
Thank you. So, Jeffs, any additional comments or points you want to make about this?
As someone who is probably I think out of everybody here who is maybe less in a patient advocacy role, I mean, I’ve done it a few times, I’m always open to who, you know, Andrew sends me in terms of young people who are diagnosed who want to speak to someone with whom they can share experiences with, you know. I’m an IT projects manager. It’s not necessarily boiler room type work but it’s still, it’s pretty fast paced.
It’s pretty intense at the times. One thing that I’ve really experienced in terms of just first firsthand trying to deal with having CLL and making all the appointments, the bone marrow biopsies, the routine blood work, you know, I tend to‑‑I don’t openly communicate my condition to everyone at work, but I’ve been lucky and I’ve been blessed to have pretty decent managers who I directly reported to ever since diagnosis, and they’ve been just very accommodating and understanding. And in some regard they have to be, but I’ve been lucky enough to find that in the workplace, and that’s been really, really great.
Okay. And actually that’s a great segue because the next thing I was going to ask about was how each you have handled communication with family and friends about the diagnosis. That’s a very personal thing. There are some people who are way out there and, gee, we don’t know anybody like that, but it’s a really personal thing. So maybe Jeff, Jeff Folloder, how did you handle that initially, and has that changed over time?
Well, I never hid my cancer diagnosis from anyone. I believe in the very first Patient Power event that I did I talked about the mistake that I made with my cancer diagnosis. I told my family. I told my wife. I told my daughters. I told my friends. But I kind of sort of forgot to tell my daughters that my CLL wasn’t considered hereditary, and my daughters kind of sort of flipped out for a significant period of time until I learned, wow, I should probably let them know what exactly is going on so that they can stop worrying a little bit.
And I did. And so now I make sure that people understand what it is that I think they need to hear. I don’t tell everyone the gory details of my CLL experience. Some people I tell, yes, I’ve got cancer. I’m a survivor, or I’m in remission, or I’ve relapsed. And the people I care about, I make sure they understand what’s really going on and how it affects me.
And at this point some almost nine years after diagnosis, and I know this is going to sound very counterintuitive, cancer gave me an awful lot of opportunity. I would have not had the ability to pull the hand break up on my life and reprioritize everything without a cancer diagnosis. I was moving too fast. Concentrating on the wrong things. Spending my energy on the wrong things. Now I focus on the right things.
And as Andrew is fond of saying, I’ve learned how to live well, and that’s because I’ve learned from everyone involved with Patient Power.
Wow. Well, thank you. Michelle, Jeff B, Andrew, other commentary about how you communicated or chose not to communicate?
I did the opposite. Because‑‑probably because my career included crisis communications I was afraid if once I let out the info it would be career suicide, which is a very sad thought when you think of society. But instead now I’m trying to change that, that thought has that’s out there, that you still can be viable when you have a cancer diagnosis, which everyone here is proof of. But I was very afraid of that, that that would ruin my career.
As a matter of fact, I did not come, you know, out until I started in the infusion room and reported for Patient Power from it each time.
I was in infusion with the FCR part of my trial. So it dawned on me that in the past I had worked with the American Cancer Society and convinced people to come out about their cancer and explain to other patients. And I felt somewhat like a hypocrite that I did not, and I realized it was time. It was really time to do that. And it wasn’t only about me. It was about others as well. And that really helped empower me a lot.
And also as Jeff has said and I was saying before, it really does help you prioritize what is right, the right things to be spending your time on because I was on the hamster wheel of career and never sleeping, and this forced me, I had to. And as you said, naps aren’t a bad thing. I had to learn that, too. So it does help in certain ways, although it’s not a great way to have to learn the lesson. It is what we have, so you have to make lemonade out of lemon s, and I think that’s what all of us here have been doing.
Thank you. And Jeff B?
When I was first diagnosed, there were a handful of people, friends and family, who I told. And I can honestly say and somewhat brutally say this, there were some people that swept it under the rug because it’s a chronic condition. I didn’t need treatment right away. Many of them didn’t understand that, it being cancer, because they’re used to acute cancers, tumor‑based cancers that you have to attack immediately.
You know, I had other people who kind of buried me already because I told them cancer, and they stopped reaching out to me. And even up until today I still get a rare text message from some of these folks asking me, not in these words, but they pretty much ask me if I’m still alive. And I’ve kind of put them out of my life.
And there were some who were understanding, who actually read up on the things that I had sent them about CLL and how it’s chronic and how there’s all these emerging therapies on it.
So really for about a couple years after that, to kind of going to what Michelle was saying I was kind of in the closet about it. And then when my lymph nodes in my neck became a little more apparent and I really couldn’t explain it away all that easy, I came out a little bit more about it. And, you know, like I said, there have been people who have been very understanding. There have been people who have told me, well, it’s chronic and you’re taking a pill for it now so it can’t be that bad. And there’s been other people who have been like, oh, my god, cancer, you’re still alive. And, you know.
I’m going to go a little bit out on a limb, Jeff. If I understood correctly you were diagnosed‑‑weren’t you diagnosed when you were still dating your wife? Is that?
Her and I had just gotten engaged. We got married last year. She’s actually expecting, by the way, late February.
We’re having a boy.
Oh, that’s so exciting.
And I bring that up because the other question I kind of wanted to explore with all of you is how did your diagnosis, if you’re willing to share, impact your relationship with your significant other or your spouse, you know, the person that’s closest to you? Was that different than dealing with other people? Anybody want to…
I can start that off. You guys met Olga at ASH last year. If anything it’s solidified us. She’s a fire brand about it. She’s my rock. I really couldn’t make it through this without her. She’s been vital in terms of just my survival and us just having a happy life together. And we’ve been challenged by a lot of things. This is probably one of the biggest challenges, and it’s just made us better. So even under those circumstances, so.
Esther, I think I should jump in.
And you can tell us. So, you know, I was sort of more clinical. What do I have? What do we do, etc.? And as I said earlier, I thought my life was over, was relieved to find out it wasn’t. But all this was coming down on you too, and I don’t know to what extent you really shared how you were feeling because it definitely affects. We were‑‑you were a young woman. Esther’s seven years younger than I am, so you were younger. We had the idea‑‑we had two little kids, and we had the dream of having a third, so you might share what you were thinking.
Sure. There was never‑‑I think the hardest person to share your diagnosis with was you, and my feelings about your diagnosis, the hardest one was to share that with you. And what was most helpful to me because I had loads of fears was to share it with other people who loved you as much, loved you in their own way as much as I loved you as my spouse.
So, you know, I think if anything it just solidified my dedication to our relationship and to figuring out the best way to support you emotionally and physically and professionally. So, yeah, you know, all of you have been talking about sort of there’s this weird silver lining of having a diagnosis of something. The silver lining is you look at what you’re really grateful for. And that’s really what it did for me as a care partner to you, Andrew. To say, okay, this ain’t good, but what’s the good stuff that we can do if we work together, and that’s really what’s happened.
We should mention that we began couples therapy.
That’s right. We did, and that was very, very helpful so that I was able to communicate with you openly and you weren’t afraid to tell me when you had feelings, whether they were of fear or trepidation or not knowing how I was going to react. It took a long time for us to figure that out. I think we have.
One of the interesting things that happened in my particular journey, I got the diagnosis and of course everyone’s freaking out in the house. My wife is freaking out in the house, and she was being somewhat stoic about it and really didn’t know quite how to deal with things.
When the first doctor that I had seen that had given me the diagnosis described the treatment plan he wanted to do, I did a typical type A personality thing and said stop, went and talked with Dr. Google for an awful long time and decided that I needed a second opinion right then and there. And one of the watershed moments of my treatment journey was when we were sitting in that clinic room at MD Anderson when my doctor, not me, but to my wife walked over, picked her up out of the chair and gave her a bear hug to let her know that she’s a part of this process as well. It’s not just about me. And that was sort of a little bit of a release from the pressure valve because this is very much a team journey. I can’t even begin to imagine someone with CLL going through it by themselves, so I am extremely grateful to my beautiful bride of 31 years, and I could not have gotten to this day without her, period.
Thank you. Michelle, did you have something you wanted to add on this?
Yes. A few things in that we waited until recently for couples therapy. I would suggest that it be started sooner, as you and Andrew did, because it would have been very, very helpful.
In the beginning I tried to protect my husband from things, and as I was living in Florida and he was in Massachusetts I considered not even telling him. In the first 24 hours, you know, your mind does crazy things. He was not with me because I didn’t even know there was anything wrong with me when I was told, and I even considered for him ending the marriage because it wasn’t fair to him. This all went through‑‑crazy things go through your mind. So I didn’t think it was fair to him, and his first wife had cancer. So the mind goes to crazy places.
Thankfully I did not. I shared, and he has been‑‑he has been by my side every step of the way probably much to his own physical health detriment, which is on track now. But he sacrificed a lot. He has been with me for every appointment. Every treatment he was by my side, every bone marrow biopsy. And thanks to him they redid some of mi tests which showed my genetic markers which they were not aware of as to how serious my CLL was.
He had read about that things could mutate or that tests only test a certain percentage of your blood and that perhaps it was different, and my symptoms were becoming more apparent that I was getting closer to treatment even though other things, other numbers did not show that through my FISH tests, my flow cytometry test. So he pushed them to redo the tests, and lo and behold, I was 11q, and they didn’t realize that. And IGHV they had known unmutated, but they didn’t realize the 11q. So I do suggest that people if they start seeing certain symptoms they do push for certain things, but my husband did that. I didn’t. I would not have pushed for that myself, so thank goodness I had a partner along the way, and I don’t think I could have done everything I did to be here today.
If I’m reading all of you correctly, the relationship with someone else, a care partner, a caregiver, was additive for you.
And open communication.
Yeah. Because I know that we, Andrew and I, have spoken with patients where they really were reticent to share with the people closest to them for fear of scaring them, scaring them away, not knowing how they were going to react, so that’s a really important point.
The other thing I wanted to ask you all about was a few of you referenced having a wonderful medical team and finding a specialist and educating yourself. So finding the right doctor, educating yourself about the disease, what did that do for you? I mean, did it help you with just the emotional part of it? Did it help you feel more in control? Why was that a good thing?
Could I start, Esther?
So, first of all, Jeff Folloder mentioned about the doctor giving a hug and maybe it was probably Dr. Keating, but other doctors, Dr. Kipps down in San Diego gives hugs too.
I was‑‑put my hand out, and he said, no, I want to give you a hug, and he’s done that with you too, as Dr. Keating has. What it did by getting the right doctor is I think gave me, and I think you too, confidence. And this ties in to Jeff Brochstein as well. Confidence to go on with your life and at that age, earlier age, said go ahead and father a child, which is a big deal, right? That’s not just a short‑term thing. And I’d be interested in what Jeff Brochstein says, but I know you and I, Dr. Keating gave a hug and said, go have your baby, which here we were in a major cancer center. Go have your baby.
And he’s 21 now.
Yeah, he’s 21 and he drives us crazy and we love him, but he’s our thirties, he’s our miracle baby. And, Jeff, you and Olga having the confidence to do that.
Well, Andrew, a couple, I mean, we’d been trying for a while, and a couple of years ago a doctor told Olga and I that we had a better, almost a better shot of hitting the Powerball than we did of conceiving, and it kind of happened on its own a few months ago.
So it’s really a miracle. You know, I think what really found a comfortable place for me is I found a community oncologist who did have a specialty in hematology though he wasn’t a research specialist who has a great bedside manner, and he was also very cool with me going to MD Anderson and talking to Dr. Thompson and talking to a research specialist, and that gave me a good counterbalance. That gave me that second opinion. I could weigh that with what Dr. Stephen Szabo here at Emory was recommending, and I came up with what was best for me.
And Olga‑‑and us getting pregnant was just all the more of a present on top of that, so life is good in that regard.
Any other comments on that? Jeff?
I’d like to chime in just a little bit. Andrew had mentioned Dr. Keating and his bear hugs and all that wonderful you stuff. One of our very first appointments with Dr. Keating, I felt the need, as many new patients do, to sort of like unload the guilt, all the things that I was doing that may or may not be exactly healthy, so it was sort of like a confessional.
And I can remember telling Dr. Keating, okay, you need to know that I smoke an occasional cigar, maybe an occasional briar pipe. And he asked me, well, how often do you smoke, and I said, ah, three or four times a month. And he said, okay. And I didn’t quite understand what okay meant. And then I kind of confessed, okay, you need to understand that most evenings I have a whiskey or two.
And he asked me what type of whiskey I drank, and he complimented me on my taste. And he actually stopped me and said, I am here to help you live a good life, not make you miserable. That’s where we were focused on. My first doctor just wanted to start treatment. Dr. Keating wanted me to live well, so instead of just getting a, quote/unquote, gold standard of treatment, Dr. Keating was focused on getting me the best treatment. So that was sort of my start to living well.
Yeah. That’s how we felt about finding the right team for you, Andrew, was that. It’s what’s the quality of life and what are your priorities in your life and will your medical team‑‑is that what they’re focused on.
Right. You know, I make one comment about that, Esther, and I want to hear what Michelle says too.
So we’re blessed now with a range of‑‑a whole array of treatments, Jeff, you recently, Jeff Folloder led a town meeting in Jeff Brochstein’s home town recently where you spoke about that, that there are more treatments either approved or in research than ever before. So part of it is what’s your situation, and Michelle talked about unmutated and 11q, what treatment lines up with that clinically, but also what are your goals? Somebody who has FCR might be able to stop treatment after six months if it’s right for them and if it works for them. Some people may‑‑there’s some idea with Venclexta combined with Gazyva, maybe you’ll be able to stop after two years. With ibrutinib you’re taking it long term.
So what’s right for you? And I think all of us need to take a look at our lives, have a conversation with a knowledgeable doctor and state our goals. What are our personal goals for what works for us. Michelle, I mean, you may have things you want to add too.
Certainly. So when I went on the clinical trial I’m on, which some people know as IFCR, ibrutinib and FCR, I did not know at the time nor do I think they knew long‑term what would happen, but here it is. I can’t believe it. It’s three years this month I’ve been on it. I’ve been on ibrutinib for three years now, and I will be indefinitely until either it stops working or something better comes along, and I am able to live life. I am looking of course, as we all are, for a cure someday, and I’m still not MRD negative. That would be wonderful. That would be great. But right now I’m holding steady, and that’s a good thing. So my goal is to be able to live life as healthy as I can, and that’s what this is doing right now.
Great. Well, so, I’m going to switch gears a little bit, and I want to ask you all a question. Have any of you dealt with a situation where you tell somebody what’s going on for you and they say, well, you don’t look sick. What do you say? What do you do when somebody says that to you?
A lot of smiling and nodding. It is a very common response. I think the two most common responses that we as CLL patients hear is, one, you don’t look sick, or two, oh, you’ve got the good cancer. Neither of these are acceptable. Yeah, I look good because I work at it. The whole concept of you don’t look sick, well, there’s a difference between looking sick and feeling sick, and as a CLL patient I take as much charge of my physical well‑being as possible. Before I was diagnosed with cancer I was a couch potato. I never exercised.
I didn’t need to. I was pretty lethargic and sedentary. Now I’m an avid power walker knocking out between 30 and 35 miles every week. I do it pretty fast, too. I’m trying to maintain my weight, and I’m trying to maintain my energy level. So, no, I don’t look sick. Sometimes I feel sick. I just did a week and a half on the road. I missed a bunch of naps. I’m a little tired. Actually, I’m a lot tired, and I’m looking forward to a nap this afternoon. And I’m going to take one, and it’s okay.
But this is part of my new normal. My new normal is the way I feel doesn’t necessarily show. And my wife understands that. My family understands that. The people close to me understand that. My doctors understand that. So if people don’t get it, that’s their problem, not mine.
Any other commentary on that? I think that’s a great, very positive way of looking at it.
I have to say that I’m trying to look at the positives about people saying you don’t look like you have cancer. In other words, I feel like they’re trying to convince me I don’t have it because I don’t look it, but I guess I’d rather not look it than look it. That’s what I keep trying to tell myself. And as Jeff just said, I do smile a lot, it’s like, oh, yeah, you really don’t know what you’re talking about, but thank you. I know you mean it to be good and be nice. I also know people don’t know what to say. So I try to put the little sarcastic bubble aside and just try to think of that.
But as Jeff said you do have to‑‑you have to take charge. And I continue to, as Jeff was saying, I continue to work out in the way I do throughout even infusion. Continue to go to the gym and use weights and do cardio. And when the weather’s good enough up here, which it’s now turning to not be, do whatever I can outside as well as in the gym because you feel better.
And that is one way I felt I could take control when everything else was out of control health‑wise. So it also helped me in that way, in that respect as well as to be healthier physically. So it’s very important, I’d say.
And really what you guys are all talking about is how do you stay empowered and positive. And for you, Jeff, it’s everything from power walking to taking naps, and for you, Michelle, it’s going to the gym and being an advocate. And Jeff, Jeff other Jeff, you’ve talked about some of the things that you do. And you’re going to be a lot busier with a baby in the house.
Anything else that helps you to stay positive in all of this?
You know, I was always active for I don’t know 20 years before I was diagnosed. I’ve always lifted weights, done Cross Fit in recent years. So I spoke about this earlier, and this really kind of repeats some of the stuff that Michelle and Jeff were saying.
I’ve never appeared sick. I’ve always been physically fit. There was a time for about two years since I was diagnosed that I had some lymph nodes that went away once I started the ibrutinib. People never associated me with some sort of chronic or acute illness. And when I’ve told them what I have and I’ve told them about the condition, you know, I’ve also followed up with just trying to create awareness around this, send them some links, sending them some videos. Maybe sending them the original video I did at ASH last year, just to really create awareness around it. And it’s really up to them if they want to absorb it, on Jeff’s point.
So, you know, I think to kind of wrap up all the things we’ve talked about, what advice do each of you have that might help someone who is facing a diagnosis of CLL in midlife? What lessons have you learned along the way that helped you face it?
You know, just kind of giving somebody advice, what would that advice be? And maybe, Andrew, do you want to start?
Yeah. I will say first given what we know about CLL and the range of things going on how, your life is not over. I thought my life was over. Here we are. I was diagnosed in 1996, or 22 years. I mean, I had no idea that I’d make it 22 months, right? And if you read some of the old articles and stuff you’d say, oh, life expectancy is not very long. So first of all, you’re going to live a long life and thank god for the medical research and the array of things that are available.
And I think Michelle said it too, right now, she’s been in a trial, she continues to take the ibrutinib, maybe there’ll be something else that she’ll need at some time and we’re confident that there will be. So, Esther, you remember that there was a guiding light, a patient advocate in CLL years ago when I was diagnosed, and she gave us two words as advice.
Chill out. And so that’s what I’d say. I’d say chill out. I don’t mean to be harsh. There’s a lot of grieving that goes with a diagnosis. I’ve probably said it to my friend Jeff Brochstein when we met in Atlanta last year, to you and Olga, but I would say that, and that’s based on evidence. That I’m living longer and people living a long time. And we get an eye into the research going on, and there’s a lot. So I think‑‑it’s not perfect. There are side effects, there are expenses, and there are course corrections in your head as well as in your life, but you’re going to live a long time. Believe me.
Nice. Jeff B, any advice you would give to someone?
Really along the same lines that Andrew just spoke and what Jeff had mentioned when he gave his intro. When you get CLL, when you get a diagnosis of this kind, god forbid, but when it happens during these years just take the what‑ifs out of your life. Take the projection out of your life because that will just make you grow worrisome and grow older and grow grayer. You really have to‑‑just to take things by the day. Just do your best early on to do as much research as you can about it. Try to see a specialist early on. I think that would helped me out my first couple of years if I would have gone to see a specialist as well as have somebody local and community‑based where I lived.
Reach out to people like Andrew, to groups like Patient Power. It’s a different world now than it was 10 years ago in terms of technology and information that’s out there. And I think most of all just keep tabs on the treatment landscape that’s changing every month it seems like or every six months something is approved, something new, something better, something not chemo related. Really, just pay attention to those things and you’ll be okay.
Thank you. Jeff?
I would tell everyone that is recently diagnosed with CLL to do a couple of things. First, take a deep breath. I guess during pregnancy they would call that the cleansing breath, but you’re going to need to do a couple of them. So remember, that, Jeff, cleansing breaths.
Second, everyone has said it again and again and again. See a CLL specialist. You don’t have to see the specialist regularly, but you need to get a CLL specialist as part of your team. The landscape of medicine is changing not just monthly. It’s changing weekly, daily and hourly. One of the things my doctors keep on telling me the longer we wait the more likely we come up with something even better to treat you with. When I was first diagnosed we never heard the word “cure.” Now we’re hearing the word “cure” for some forms of CLL, and it’s getting better for lots of people very, very fast.
Make a few goals. I want to do this. I want to do that. Esther, you guys just saw Bruno Mars. Well, you saw him in a coffee shop. I’m going to go see him in concert this weekend. Why not? This is not a death sentence. This is just a part of my life. So I’m going to go do the things that I want to do, and that’s what I tell every single patient. At several of our town meetings I have made the point to remind people that statistics only look backwards. When you start looking at Dr. Google you’re going to see that the average life expectancy of a CLL patient is about six years. Well, that’s only looking backwards. I’m now nine years into it, so some people would say that I’m past my expiration date. I don’t look at that way. I’m living a great life. Every minute that I’m kicking, I’m kicking it for real.
Thank you, Jeff. And, Michelle, any parting advice in this discussion?
That’s a tough act to follow.
So I would say the number one thing is to educate yourself and not just with as Jeff calls it, Dr. Google. Because if so you will get frightened by what it says because it does look backwards. But I would say to educate yourself as much as you can through credible sources, through current information versus past. Otherwise, you’ll get really frightened.
And the other thing is for those of you watching this, Patient Power generally has the leading doctors around the world for CLL on it. If you can get to one of those doctors that you see or one of the institutes, then that is a great source to go to to find out what is best for you to match you up.
If you do need treatment yet or not, projected time to treatment. And then if you can either go to whichever doctor that is, or in conjunction to what Jeff of Atlanta as opposed to Jeff of Texas is doing, pair that with your community doctor if at all possible so that you don’t have to travel. But that way you can be confident that you’re getting either in a clinical trial tomorrow’s treatment today or the best in treatment there is today. And there are so many out there.
The other advice I’d give, and someone gave this to me in my first week of diagnosis. Stay as healthy as you can today because there will be something to treat you tomorrow. And we’re all proof of that, all of us here right now.
Yeah. Those are all such great advice, and you all are a delight and an inspiration to talk to. I feel very honored to be sort of in the middle of this circle of empowerment.
I want to thank all of you, Michelle, the two Jeffs and Andrew, for sharing your personal experiences as positive and very empowered CLL patients. It’s always inspiring to talk with each of you, and you provided some great perspectives and suggestions. And I want to thank our CLL community for joining us today and I hope that this conversation has been helpful to you. I’m Esther Schorr. Thanks again.
https://powerfulpatients.org/pen/wp-content/uploads/CLL-Patient-Cafe®.png600600Kara Rayburnhttps://www.powerfulpatients.org/pen/wp-content/uploads/New-Logo-300x126.pngKara Rayburn2018-11-14 17:17:432019-09-02 12:28:33Patient Cafe® CLL – October 2018
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