You may want to do some yoga, especially if you are experiencing chronic stress. However, you can breath a sigh of relief about the positive research in bladder and prostate cancers reported this month. There’s even some super cool research that involves containing, rather than killing, cancer cells. Check it out.
Chronic stress is not good for anybody, but as livescience.com reports, it may be even more detrimental for cancer patients. Acute stress is normal on occasion to help us avoid danger, but chronic stress, which weakens the immune system, leads to changes in the body that could then lead to the development and progression of cancer. However, experts say we can’t be so fast to draw a link between stress and cancer because of the ways different people respond to stress. Some people are motivated by it; others sickened by it. Some experts believe it may not be the stress that leads to cancer, but rather the poor habits people adopt to cope with stress. While experts don’t yet agree that there is a clear and definitive line between chronic stress and cancer, there is evidence that taking measures to reduce stress is best for overall health. Find out more here.
Speaking of stress, cancer can be stressful. Many patients turn to alternative forms of healing to manage the affects of cancer or treatment, but medicalnewstoday.com says, that may be doing more harm than good. As many as one third of people living with cancer are using alternative or complementary therapies. The most common form of alternative therapies is the use of herbal supplements, which researchers found could be a problem because the ingredients of herbal supplements are not always known, and there is a concern that supplement ingredients could negatively interact with the medicines they are taking. For example, high levels of antioxidants may make radiation less effective. Yoga, however, is the one complementary method of treatment that seemed to help patients. You can learn more about the research involving alternative and complementary therapies here, and decide whether or not those methods are right for you.
Researchers are starting to decide that maybe killing all the cancer cells isn’t the best option for combating cancer, reports medicalnewstoday.com. Cancer cells evolve really fast, and some studies show that there is no way of killing them all. Researchers are looking at a new approach of treating cancer that involves preventing it from developing and spreading by containing it. They hope to use medication to make the cancer cells dormant and keep them that way, which could be useful in cancers, such as breast cancer, which is now considered a chronic cancer because it can come back many years later with secondary tumors. You can learn more about this unique approach here.
Other findings this month bring good news for bladder cancer patients, reports seekingalpha.com. The FDA has approved the Johnson & Johnson drug, Balversa, for patients with metastatic bladder cancer. The approval was based on a trial that resulted in a 32 percent overall response rate. The patients who are eligible for Balversa, have metastatic bladder cancer with specific genetic alterations, but there is hope that it will eventually be tested on other types of cancers. Learn more here.
More good news comes from British scientists who have discovered 17 genes for diagnosing prostate cancer, reports dailymail.co.uk. Combined with the six genes already known to be linked to prostate cancer, there are now 23 genes that can be screened through a spit or blood test. Find more information about the research and what it means for diagnosis and treatment of prostate cancer here.
The not-so-good news reported this month is the increase in lung cancer among non-smokers — especially women. An in depth look at this growing issue can be found at theguardian.comhere.
The ups and downs of cancer research news can be stressful for anyone, so to alleviate that stress, let’s all stay informed, and maybe take to our yoga mats. Until next month, namaste.
Last week, we hosted an Empowered #patientchat on the power of patient storytelling with special guest HealthSparq (@HealthSparq) to explore the accessibility of patients to attend healthcare conferences. Lisa Deck (@lbdeck) and Emily McIntosh (@mcintose) the winners of two patient scholarship also joined us. Their scholarship goes towards attending the The Patient Experience Symposium.
The #patientchat community came together and shared their best advice and tips.
In recent years, those who live with dementia are leading fuller, more active lives than they may have done in previous decades. Treatment is more readily available, and though there is no known cure as yet, the general public are better informed in how to approach those who have it.
But if you’ve not met someone who has dementia before, there are a few easy mistakes to make which can be embarrassing and distressing for everyone involved. Below are a few things to avoid when conversing with someone who has dementia.
“If a person with dementia talks about a subject that shows they are having difficulty recalling, you should ask yourself whether it is truly necessary,” writes Stephen James, an author at Academized and PaperFellows. “If you do need to help them remember something, avoid asking them directly, and talk, instead, about what you remember about an event or story.”
Dementia can affect verbal cognition. Remember that if a person with dementia is having difficulty understanding an instruction, continuing to repeat that instruction is likely to confuse them further. If you need a person with dementia to perform a series of actions, such as putting on a coat and shoes and getting into a car, listing them off in one go is going to overwhelm them.
Instead, give clear direction for each task you want them to do. It is important to issue them as directions rather than questions as they may have difficulty understanding the context for each action.
In fact, it is a good idea to modify your language over all. Even those who have had a large vocabulary may have difficulty fully comprehending long winding sentences. Using complex words and difficult phrases is likely to cause confusion which, in turn, can lead to embarrassment and irritation.
Instead, use simple sentences with uncomplicated words. Having said that, remember that dementia doesn’t affect a person’s IQ, so it is also important not to become condescending.
Living with dementia can be distressing enough without someone constantly reminding you of all you may not recall. If you are speaking with someone who lives with dementia it is important to avoid conversations which may make them emotional. This can include correcting aspects of their lives that they may not recall, or distressing events such as a loved one’s death which they may not remember.
It is best to avoid conversing on explosives subjects such as politics or religion,” says Jane Renbourne, a regular contributor to Custom Writing Service and BigAssignments. “Though they may be able to recall aspects of this, those who live with dementia have difficulty dealing with conflict. Even what seems like a slight disagreement may spiral out of control. “
Most importantly of all, it is important to remain as patient as can be when interacting with a person living with dementia. Showing haste to complete their sentences, telling them things you think they should remember and disrespecting their need to communicate for themselves is as upsetting as it is with anyone else. Remember that however difficult adapting to dementia is for the observer, it can be a constant source of frustration for the person who has it.
However, if you show some understanding and patience, there is no reason that both you and your friend with dementia cannot spend some wonderful and meaningful times together.
https://powerfulpatients.org/pen/wp-content/uploads/April-23-Learn-more-about-this-day-at-reallygreatsite.com_.png600600Chloe Bennethttps://www.powerfulpatients.org/pen/wp-content/uploads/New-Logo-300x126.pngChloe Bennet2019-04-25 16:04:532019-09-02 12:28:47What To Avoid When Speaking With Someone Who Has Dementia
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 16:23:262019-09-02 12:28:47Words Matter: Why Cancer Isn’t a Game of Winners or Losers
The Leukemia & Lymphoma Society (LLS) is the world’s largest voluntary health agency dedicated to blood cancer. The LLS mission: Cure leukemia, lymphoma, Hodgkin’s disease and myeloma, and improve the quality of life of patients and their families. LLS funds lifesaving blood cancer research around the world and provides free information and support services.
https://powerfulpatients.org/pen/wp-content/uploads/LLS-1.png292420Kara Rayburnhttps://www.powerfulpatients.org/pen/wp-content/uploads/New-Logo-300x126.pngKara Rayburn2019-04-16 18:27:412019-09-10 15:06:39The Leukemia & Lymphoma Society
The Aplastic Anemia & MDS International Foundation (AA-MDS) is the world’s leading nonprofit health organization dedicated to supporting patients and families living with aplastic anemia, myelodysplastic syndrome (MDS), paroxysmal nocturnal hemoglobinuria (PNH), and related bone marrow failure diseases. The Foundation provides answers, support, and hope to thousands of patients and their families around the world.
https://powerfulpatients.org/pen/wp-content/uploads/AA-MDS.png292420Kara Rayburnhttps://www.powerfulpatients.org/pen/wp-content/uploads/New-Logo-300x126.pngKara Rayburn2019-04-16 18:19:052019-09-02 12:28:46The Aplastic Anemia and MDS International Foundation
I spent Thursday, April 11, 2019 at a National Academies of Science, Engineering and Medicine (NASEM) workshop titled “Health Literacy in Clinical Trials: Practice and Impact” – this meeting is part of the NASEM’s ongoing Roundtable on Health Literacy. I got an invite due to a tipoff from #BSCM co-founder (and one of my besties) Alicia Staley, who was on the agenda. Since health literacy is one of my foundational interests, and part of my own work in healthcare system transformation, I was happy to trek to Washington DC for the day to see and hear what was shared in the meeting.
Statistics on clinical trial enrollment in the US, for cancer or any other medical condition, are pretty disheartening on the public engagement front. In an article in the journal Contemporary Clinical Trials titled “Clinical trials recruitment planning: A proposed framework from the Clinical Trials Transformation Initiative,” the authors said, “A 2015 analysis of registered trials revealed that 19% were closed or terminated early because they could not accrue enough participants. Trials can also experience significant delays related to recruitment. As much as 86% of clinical trials do not reach recruitment targets within their specified time periods. Data suggest that study timelines have potentially doubled beyond planned enrollment periods due to low recruitment rates. Failures in meeting recruitment goals have important scientific, financial, ethical, and policy implications.”
It seems likely that a good chunk of that lack-of-engagement is due to one or more of these factors:
The keynotes, panels, and discussions at the workshop kept circling back to some core points, which seem to be foundational to making clinical research more accessible, and leading to the accelerated discovery that the public, the clinical community, and the research community are all interested in. Here are my key takeaways:
It’s the relationship, kids. Like all of healthcare, building relationships is the key to good outcomes, whether it’s one person working on managing their own health or a cancer community seeking clinical trial options.
You can’t rush relationship building. This creates tension for researchers, who are often on a one- or two-year long cycle of grant writing to secure funding for a clinical trial. Researchers can start a conversation with communities and clinics who’d be interested in participating, but holding that interest for the year or more long process of securing funding, navigating the IRB process, and launching the trial is a challenge.
“Informed consent” needs to be shifted to “educated consent,” with the people working on a decision about enrolling in a trial – the ones called “participants” or “subjects” (not my favorite word) – given all the knowledge-building material they might want or need to make a fully educated choice.
If you’d like a flavor of the conversation that took place in real time during the workshop, there was a vibrant one on Twitter with the hashtag #HealthLitRT (Health Literacy Roundtable). There was consensus, both in the room and in the online discussion, that clinical trials are themselves an outstanding health literacy building opportunity. The key will be to help the patient and research communities work together on creating the literacy tools, and the delivery processes, that will turn clinical research into a virtuous cycle of discovery, and delivery of new treatments.
Casey Quinlan covered her share of medical stories as a TV news field producer, and used healthcare as part of her observational comedy set as a standup comic. So when she got a breast cancer diagnosis five days before Christmas in 2007, she used her research, communication, and comedy skills to navigate treatment, and wrote “Cancer for Christmas: Making the Most of a Daunting Gift” about managing medical care, and the importance of health literate self-advocacy. In addition to her ongoing work as a journalist, she’s a popular speaker and thought leader on healthcare system transformation from the ground up.
Last week, we hosted an Empowered #patientchat on the power of patient storytelling with special guest Kerri Sparling (@patientrev). Kerri was diagnosed with type 1 diabetes in 1986, sits on the Patient Revolution team, and is working towards careful and kind care. The #patientchat community came together and shared their insights and best advice.
Top Tweets and Advice
Share Your Story With Your Doctor
https://powerfulpatients.org/pen/wp-content/uploads/patientchat-4_5-highlights.png600600Kara Rayburnhttps://www.powerfulpatients.org/pen/wp-content/uploads/New-Logo-300x126.pngKara Rayburn2019-04-12 17:06:312019-09-02 12:28:46The Power of Patient Storytelling #patientchat Highlights
Music has always been a universal language with the power to heal, restore and challenge an individual. The history of music dates back to the beginning of civilization and music therapy came along a few thousand years later. Music therapy first became popular in the late 1940s, a few years after World War 2 and the beginning of what we now call “The Hippie Movement”. It has been proven to help patients self-sooth, reduce muscle tension, decrease anxiety while increasing self-awareness and self-confidence, increasing verbalization and the patient’s overall view of themselves and their future. In today’s world, there are many stories of how music has helped patients through their recovery period who suffered from a mental or physical illness.
Music Therapy and Mental Illness
One in five adults in the US suffer from mental illness in a given year, which is approximately 43.8 million Americans. Despite such a large percentage of Americans who suffer from mental illness there hasn’t been much progress in effectively treating the root cause instead of only the symptoms. Music therapy bridges the gap between medication and alternative therapy. The Nordoff-Robins approach to music therapy focuses on helping patients with autism, mental disorder, and emotional disturbances to increase their interaction with others while decreasing harmful tendencies and triggers.
Follow the Music
A recent study in 2017 discussed the methods in which music therapy helped to improve the emotional and rational tendencies of people with schizophrenia. The study went on to discuss the benefits of music therapy for other mental disorders like depression and anxiety. There is now a close correlation to an improvement in social and emotional skills to the various types of music therapy available for treatment. Mental Illness advocates and patients alike have supported the growth and progress of some of the largest music concerts all over the world. These moments of music appreciation has established a greater understanding of the healing power of music.
Music Therapy works due to the release of dopamine in the brain causing you to feel a sense of reward thus increasing your mood and desire to engage with others. A randomized controlled study in 2008 on Music Therapy for Depression indicated the potential for music therapy to lower symptoms of depression while improving overall mood. Further studies in 2016 supported this claim and extended it to anxiety disorders and some personality disorders as well. Results show that patients who have been exposed to several sessions of music therapy showed a significant improvement with coping skills and their overall self-image.
Beyond the Study
Music therapy has long proven its ability to reduce the symptoms of certain mental illnesses like depression, schizophrenia, personality disorders and many more. Future studies hope to acquire more diverse data samples and cross-analysis them with studies on introducing music to children in negative environments. These studies hope to prove and expand the understanding of how music is able to alleviate certain symptoms in the brain.
https://powerfulpatients.org/pen/wp-content/uploads/Music-Therapy.png600600PEN Editorial Staffhttps://www.powerfulpatients.org/pen/wp-content/uploads/New-Logo-300x126.pngPEN Editorial Staff2019-04-10 17:26:492019-09-02 12:32:08The Restorative Power of Music
As you work through your grief, it’ll be important to have a space where you can feel comfortable and at ease. If you’re like most people, that space will be in the comfort of your own home. Keep reading for some tips on how to make your home a safe space for grief.
Keep Sentimental Items Close
While grieving, you may begin to fear that you’ll forget important details about the person you’ve lost.
Keeping sentimental items that remind you of your loved one nearby can be a useful coping mechanism during this time. These items may be photographs, trinkets, or articles of clothing that promote positive memories and help you feel close.
However, keep in mind that you don’t want to hold on to unnecessary items just because they may have belonged to your loved one. As you decide which sentimental items you’d like to keep, this is also a good time to think about what you can give away. Donating these things is a great option, especially if you’d like to see certain things continue to be put to good use.
When dealing with grief, the last thing you want is to feel stressed too. A cluttered home will not only make your space less functional, but it’ll make things more stressful as well.
Even though it might feel like a chore you want to put on the back burner, cleaning your home is the perfect opportunity for you to be productive and shift your focus for a few hours. Once your home is free of clutter you’ll find yourself feeling more relaxed and may notice that you’re able to even sleep better.
Set Boundaries with Guests
When someone close to you passes, other people in your life will probably want to stop by and check on you. Of course, these people mean well, but constantly having guests can get overwhelming. It’s okay to let people know when you’re not in the mood for company.
On the other hand though, it’s important that you find the right balance between solitude and socializing so you don’t isolate yourself.
Let Natural Light Flow Through Your Home
You may think closing yourself in the house all day will help you through your grief, but this could actually make it worse. Instead, you should let as much natural light flow through your home as possible. Research has shown that exposure to natural light can have a positive impact on moods and can help reduce depression and sadness.
Play Music for Your Loved One Throughout the House
This may seem like an odd piece of advice, but research has shown that listening to music can help people deal with grief. One study suggests creating a playlist for your loved one and picking songs meaningful songs that remind you of the person.
Getting Back in the Kitchen
Most of us have an emotional response to food. That’s why friends and family will bring food to their loved ones in bereavement. Plus, cooking for someone in mourning takes one more thing off their plate.
However, cooking may be the ticket to getting back into a semi-normal routine. The act of providing a warm meal to yourself and your family could be rewarding in itself. Cooking meals your loved one had especially liked could be a way to feel somewhat connected still. You might even discover new foods and the kitchen can start to become a source of excitement and it could spark curiosity even in a dark time of your life.
As you grieve, it’s important to remember that the process is a journey that will have its fair share of ups and downs. With self care, patience, and a strong support system you can gather the strength you’ll need to carry on.
Matilda Davies is a health and wellness writer based in Raleigh, North Carolina.
https://powerfulpatients.org/pen/wp-content/uploads/Untitled-design-28.png600600Matilda Davieshttps://www.powerfulpatients.org/pen/wp-content/uploads/New-Logo-300x126.pngMatilda Davies2019-04-10 17:25:462019-09-02 12:34:33How to Make the Home a Safe Space for Grief
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
Cancer is costly. Each year, it costs $180 billion in health care expenses and loss of productivity, says the American Cancer Society. For individuals, it is the life-saving medications they need that can cost the most. According to cancer.gov, 90 percent of Americans say that cancer drugs are too expensive, and the prices have been steadily increasing for the last twenty years. Some cancer drugs debut on the market at a cost of more than $100,000 per patient per year, some for as much as $400,000. With this type of pricing, even insured patients can be facing out-of-pocket expenses in the tens of thousands.
When patients can’t afford their medications, it can lead to people taking them in lower doses or skipping them altogether, and that can lead to serious consequences, such as shortened survival times. High-cost medications can also lead to financial ruin for some patients. Chronic lymphocytic leukemia (CLL) patient James Miller, whose copay for his experimental and life-saving medication is “outrageously expensive” at $790 a month, says that, medications could eventually bankrupt people, especially if the medications are a patient’s only option for survival.
It’s literally a matter of life or death for patients like Miller to find funding solutions for their cancer drugs. Luckily for him, his medication is covered through the manufacturer’s Patient Assistance Program. Drug manufactures created Patient Assistant Programs, commonly known as PAPs, to provide qualifying patients with free or discounted medications.
While just about every manufacturer has an assistance program, one of the first manufacturers to offer a PAP was AstraZeneca. Company representative Colleen Kempf says, AstraZeneca began offering patient assistance over 40 years ago. The program now covers the company’s marketed medicines, and Kempf says, in the past ten years, the company has helped over 4 million patients with access to medications. “Our programs are driven by our corporate value in putting patients first. We believe that we have a role to play to support patients, and since 2005 have expressed this commitment in a very public way through our advertising.” Their PAP slogan, “If you can’t afford your medications, AstraZeneca may be able to help,” might be familiar to many as it is frequently heard at the end of its television adds and leads patients to its website which is where most PAP information can be found.
Find a PAP
The most important thing to know about PAPs is that they are available. They all vary a bit and have different names, but chances are, your drug’s manufacturer has one. AstraZeneca’s is called AZ&ME. Genentech, the manufacturer of the medication Miller takes for his CLL, calls its program Genentech Access. Celgene refers to its as Patient Support, and Takeda refers to its as Help at Hand.
Once you know assistance is available, it’s fairly easy to find it. All it takes is an online search of the name of the drug, coupled with the words “patient assistance program”, and you should be well on your way to the application process.
John Rosenguard, a multiple myeloma patient, learned about PAPs while doing research about insurance carriers. In addition, Celgene, the manufacturer of his medication, led him to its assistance program through an online risk management survey he was required to take when he was prescribed the medication.
There are also websites specifically designed to help patients find assistance. Non-profit website needymeds.org was formed in 1997 with the intent of helping patients navigate PAPs. Now a partner with Patient Empowerment Network (PEN), the vast NeedyMeds database of PAPs can be searched using the link below. All you have to do is enter the drug name to discover whether or not a PAP is available.
While it may seem like the best place to learn about PAPs is the internet, patients and drug companies both recommend you include talking to your healthcare provider about options. Miller learned about the Genentech PAP he uses through his doctor who put him in touch with a specialty pharmacy who provided him with a PAP application. Miller says he would not have known about the PAP on his own, but that without it he would “go broke”. He advises other patients to ask their treating physicians about options. “Any doctor prescribing an experimental drug like that will have a relationship with a specialty pharmacy,” he says.
Miller’s advice is good, but most people don’t seem to be following it, according to cancer.gov, which reports that only 27 percent of cancer patients, and less than half of oncologists, say that they have had cost-related discussions. But, nearly 66 percent of the patients say they want to talk to their doctors about costs. They should.
AstraZeneca’s Kempf says the company ensures that healthcare providers, patients, and patient groups are made aware of its AZ&ME assistance program. “As with any type of information or program, providers will have different levels of understanding regarding available PAP programs,” says Kempf. “The AZ&ME program works closely with healthcare provider offices on applications at their request and we’ve also seen some offices support their patients by assisting with the enrollment process for their patients.”
Each company has a different process for enrolling in its PAP. Some applications require extensive financial information, while others require basic information; Some require doctors to fill out a portion of the application, while others only need a signed prescription. Miller says for the Genentech enrollment process, he had to provide his financial information and that the application had two or three pages for his doctor to fill out. Rosenguard says the Celgene application process was extremely simple and that it took about two weeks for him to be accepted into the program.
The best way to know what the enrollment process is for the manufacturer of your medication is to go to the company website. The websites are easy and straightforward for patients to navigate. For example, the Celgene Patient Support site has large buttons that say “Enroll now” and “Financial Help”. The words are in big, bold type, and each step is written in clear language. The site also provides a phone number, email, and fax information. There is an option to download the application form if you prefer to print it and fill it out by hand. The steps you will take are listed clearly, and what you need to include with the application is listed clearly. The process was easy and efficient, says Rosenguard.
Most applicants shouldn’t require any assistance beyond what the manufacturers can provide on their websites or by phone, but there are some businesses who will help patients complete the enrollment process for a fee. The prices vary, as does the quality of service.
Not all patients will qualify for assistance. While each program has its own qualifying criteria, and there may be different requirements for different medications produced by the same manufacturer, in general, to qualify for a PAP, a patient must:
Have very limited or no drug coverage from public or private sources
Must demonstrate a financial need based on a set income and assets
Provide proof of US residence or citizenship.
“The AZ&ME program is intended to serve patients most in need and has income eligibility criteria that speak to this design,” says Kempf. “The program primarily serves patients that have no insurance coverage or patients that face affordability challenges with their Medicare cost-sharing requirements.”
In addition, the amount of assistance a patient receives and the length of time each patient can stay on the program varies. AZ&ME patients without insurance are required to reenroll in the program annually, and Medicare patients are required to reenroll at the start of each calendar year.
“It is important for patients to understand the eligibility requirements as well as the documentation requirements that are typically associated with applications,” says Kempf. “Ensuring that the application is filled out, complete, and submitted with the required documents, helps ensure an easy enrollment process.”
Once accepted into the program, both Miller and Rosenguard say that there is not much of a time commitment from them. They both receive their medication through a specialty pharmacy. Miller says his is delivered to his door each month, and Rosenguard says he is able to refill his prescription online, and also has a monthly follow up phone call with the pharmacy. In addition, Rosenguard is required to follow risk management guidelines to participate in the Celgene PAP. Guidelines, as specified by Celgene include, following safe sex practices, not donating blood, and monitoring cuts with blood loss.
AstraZeneca also uses a central pharmacy to dispense its medications to patients, says Kempf. “All medications are dispensed by a pharmacy and are sent directly to the patient’s home unless it is a medication that requires in-office administration by the physician. In office administration products are sent directly to the healthcare practitioner,” she says.
Are PAPs Worth It?
For patients struggling to pay for their medications PAPs may be the only option, and the pharmaceutical companies seem committed to providing the service. Kempf says that at AstraZeneca, they are always evaluating patient feedback to see how they can better serve patients, including streamlining the application process.
Rosenguard recommends the PAP programs. He says, co-pays, like his that were $200 a month per medication, can add up quickly. “The benefits were noticeable and met my needs to control costs over the long term,” says Rosenguard. “Plus, it educated me to help others (employees, support group members, friends) who might need this information in the future.”
An expert panel help viewers understand more about the evolving field of AML treatment. This includes identifying prognostic factors and determining patient subtypes to setting treatment goals and selecting a suitable course of treatment. The panel was made up Dr. Uma Borate of Oregon Health & Science University, Amanda Fowler of The Leukemia & Lymphoma Society, and patient advocate, Don Armstrong
And greetings from Los Angeles. I’m Andrew Schorr. Welcome to this Patient Empowerment Network program produced in association with the Leukemia & Lymphoma Society and with support from the following companies: Celgene, Daiichi Sankyo, Jazz Pharmaceuticals and Novartis. We thank them for their support, but be advised no outside party has any editorial control.
In this program we’re going to discuss the latest the treatments for acute myeloid leukemia. We have a wonderful panel, and over the next hour we will be discussing the options, but of course always discuss this with a healthcare team that you trust so you get the care that’s right for you or a loved one. Also, if you have a question send it in to firstname.lastname@example.org, email@example.com, and we’ll get to questions as we can.
Today with us with have with us a pretty long‑term survivor of AML joining us, and we also have an information specialist from the Leukemia & Lymphoma Society and a noted physician researcher from Oregon Health & Science University. So let’s go around the country and meet them. I’m in Los Angeles.
Let’s go to Fort Worth, Texas, and joining us now is Don Armstrong, who was treated for AML. Gee, Don, in 2005 your whole world turned upside down, right?
It absolutely did. September of 2005 I had no idea there was anything wrong with me until I had a couple ladies tell me on a Friday afternoon I looked horrible. That ultimately led me to see my general practitioner, and a couple of days later I was diagnosed with acute myeloid leukemia, and from there right into the hospital, right into treatment.
Right. And you were in the hospital for a long time.
I was. I was in the hospital the first time for 33 days.
Wow. And ultimately you had a transplant, which is one of the approaches still for AML, and you survived.
I did. I did. Yeah, it was interesting. That first couple of days in the hospital there was so much activity going on around we and I couldn’t understand why I was getting so much attention until one of the nurses kind of pulled me aside and said, you understand you’ve got a 25 to 30 percent chance of surviving this type of leukemia, don’t you? And I said, now I do, yes. So it was quite a shock to the system, and it was something that‑‑you just have to kind of hang on and just go with the program as much as you can.
And a shock to the family. I mean, it’s a family affair.
No question about it. Whenever you’re diagnosed with cancer, no matter what the cancer is, it’s just not you. The entire family is involved. And I had a great support system. My dad and my brother and my sister came from different parts of the country just to be with me and support me. I had an unbelievable group of family and friends that were there with me every single day.
And you had a transplant. Where did the donor cells comes from that sort of rebooted your immune system?
That’s a great question. I’m actually currently still looking for my donor. My donor, he was happy. I know he’s a male. He was excited that he was able to help me, but I have never able to connect with him. I’m trying again. I just‑‑so through the Be the Match I got my stem cells, and fortunately there was someone there that was willing to give my life a second chance.
Now, Don is very active with the Leukemia & Lymphoma Society, which is a partner in this program. Don, you’ve spent many years now, your career has been in golf and you were a golf superintendent, and yes, you sprayed pesticides on the golf course. You’re devoted to giving back. Talk the a little bit about that and what you try to tell patients and families so they can get through this hopefully successfully, as you have.
You know, like we had talked about, I had no idea there was anything wrong with me when I found out I had leukemia, and I was in for a pretty big fight of my life. After five rounds of chemo and a stem cell transplant, making it through that, I felt like I had been given a second chance, so I wanted to find a way to give back. And I found the Leukemia & Lymphoma Society. I found one of their campaigns, Team in Training. Started doing the endurance events and raising money for that organization. Just did my 2015 retraining event, but through it all I really wasn’t doing it just to run a marathon. I was doing it to raise money for research so that somebody else hopefully didn’t have to go through what I went through. So for me that was a big shift in my mindset. That eventually led me into being a part of the board of trustees, and I continued along that line. And I try to stay up on as much about AML as I can, and I talk to as many patients around the country as I can whenever I’m given the opportunity.
Well, you’re going to hear a lot today, and research has paid off. Let’s go up to Colorado outside Denver where Amanda Fowler is an information specialist with the Leukemia & Lymphoma Society. And that means if you call, and I urge you to, whether a patient or a family member, they can help because based on research the world of AML has changed significantly and gives people a great deal more help and is changing those statistics that Don talked about. Amanda, welcome to the program.
Thank you it so much for having me.
So I’m right. Research has been paying off just in the last year or two and even with more research coming our way, right?
It’s incredible. There have been drug approvals in the last two years. There are numerous clinical trials. We are really seeing AML treatment change for the better at a pretty rapid pace right now.
Okay. So just to be clear, if someone who is watching now calls the Leukemia Society like the national number, and maybe you can tell us again, how do they get to you so you can help them sort this out?
Absolutely. It’s really easy to reach an information specialist. We are open 9 a.m. to 9 p.m. eastern time and our number, which we can repeat at any time, is 1‑800‑955‑4572, and that will take you straight to an information specialist. And once you reach us we’re really there to talk and figure out exactly what you need.
So if you’re not sure if you need help or not, give us a call anyway, and we can go over a lot of the resources and services from psychosocial support to financial resources, disease education. We have a clinical trial support center, so a whole variety of resources, and we encourage people when in doubt to reach out to us.
Okay. All right. Let’s hear about the research. So joining us from Portland, Oregon, at Oregon Health & Science University is Dr. Uma Borate, who is a hematologist‑oncologist. Dr. Borate, thanks for being with us.
Absolutely. Thank you for having me.
Okay. So we’ve alluded to changes in AML, payoffs in research. You’re still in the lab moving research forward with your peers around the world. You all are making progress, am I right? The world and the options, the combinations, things you’re researching, that’s all changing incredibly fast.
It absolutely is. And I just wanted to first just appreciate Don and his journey because we see patients like him every day, and we deliver these very shocking and stressful diagnoses to patients and kind of see the journey of absorbing what this means for them. The family rallying around them. And then the treatment and the eventual, you know, the role that takes them hopefully to a cure. And I just‑‑every day when I talk to my patients I just applaud their courage. So, Don, I just wanted to put that out there. You guys are awesome.
With that said, I think in the last I would say four to five years, and Amanda can attest to this, we’ve had over nine FDA‑approved therapies for AML after about four decades of no progress. And a lot of this has come with discoveries in the lab where we have identified specific genes that have had genetic changes, what we call genetic mutations, that lead to a patient developing AML.
And now we have what we call targeted therapies where we can target that specific genetic mutation and therefor destroy the AML cells in a way that doesn’t expose the patient to a lot of additional toxicities. However, for a certain subset of the AML patients, like Don, we know that these targeted therapies can work for a while, but if you are going for what we call a curative active therapy, for a lot of patients transplant is still right now one of the most, I think, advocated and proven curative therapies out there.
Okay. So let’s talk about testing. So somebody is diagnosed with AML. What should happen now so that you as a specialist, the doctor, the team that they see, they know what version of AML you have and whether it matches up with either one of these approved therapies or maybe something you at an academic medical center are researching that could be the drug of tomorrow?
So I think that’s a great question, and for patients or family members or anybody else listening out there I think what you a alluded to as the most crucial step in the diagnosis of AML and the subtype of AML is the testing. So as soon as we identify a patient, like Don described, typically it’s, you know, you don’t feel well. You go to somebody, they say, oh, my god, your blood work doesn’t look right. You go to another doctor.
The first thing that we ask that happens is when a bone marrow biopsy, which is the diagnostic procedure that gives you the diagnosis of AML is done, that it be subjected to adequate genetic testing. And by this I mean there are many, many laboratories out there that do what we call expanded genetic mutational panels, and they test for all the different genes that could have a mutation that potentially could be targeted or make the patient a candidate for a clinical trial in the future.
Leukemia & Lymphoma Society is sponsoring an extremely revolutionary trial called BDML, which we are a part of, which does this testing and returns the results back to the clinical provider or the physician in seven days, which is really unheard of in terms of a timeline. This used to take about two weeks on average.
And so in seven days I know all the genetic changes in my patient’s leukemia and I can determine, hey, is this the right therapy for them? Should they go on a clinical trial that we have? And BDML offers several of what we call (?) Inaudible that are used to match them to the appropriate clinical trial or the appropriate drug.
Okay. So, Amanda, let’s talk about this for a second. So, oh, my god, a patient is diagnosed with this acute condition. Don found himself in the hospital right away, and I understand there can be different versions of AML. Some like do not pass go, boom, you’re going to the emergency room at the hospital right away, or some there’s a little more time. But a call comes to you, and people want to feel confident that where they are or where‑‑do they go to this hospital or that hospital, this clinic or that one. They get someone who is knowledgeable when the whole world of AML has been changing.
So how do you counsel people so they get the right testing and just all the range of options are considered for them?
Sure. Absolutely. So I should say a lot of the calls, particularly for the acute leukemias, actually come not from the patient but from the caregiver. The patient is often sick and overwhelmed, and it’s a family member who is making the calls. Of course we are having to talk to both the patient or the caregiver, but it is really important to be at a center of excellence for this diagnosis.
Not all hospitals are equipped to handle AML. If you’re lucky, a local hospital will see that and send you on to the bigger center, but sometimes that work does fall on the family member. We recommend that people go to university‑type settings or National Cancer Institute comprehensive cancer centers. These are going to be the larger hospitals that understand what tests are involved. They will have clinical trials as options, and they will be knowledgeable on the latest treatment options.
Right. So, Don, just to you. You talk to patients, and you speak around the country. It takes a lot of courage for a patient or family member to say, thank you, Doctor, but I think we’re going to go, take mom or dad, we’re going to go over there because, you know, I mean, hospitals are competitive, right?
But you and the family want to make sure that your loved one gets state‑of‑the‑art care. What would you say to them to be a good consumer?
Well, I agree with what Amanda said. I think it’s important that you’re in the right hospital, the right setting because not all the hospitals can actually handle the diagnosis of AML. So I think it’s really important that you’re in a center that can treat that, that’s got experience treating it. And so I always tell patients call the Leukemia & Lymphoma Society’s IRC and find out where is the best place to go.
And here’s Amanda. And, Amanda, you have a medical advisory board. You keep lists of AML specialists, right? So you can actually say where in where you live, in Kansas, in California, in Texas, etc., here are centers of excellence, right?
Yes, absolutely. We will talk to patients about where to go, wherever it is that they live. And then occasionally if it’s later on in the treatment and they’re considering transplant they may even look to travel, and we’ll help discuss any option that they want to get them to the center of excellence.
Okay. All right. Dr. Borate, let’s go back to the basics just for a second because we have people who are trying to understand what went wrong. I’m a leukemia patients too, but with chronic lymphocytic leukemia, but I know that our bone marrow often in our hips and bones is the blood factory. What went wrong in that blood factory, and how does it show up in AML?
So, thank you, Andrew. I think that’s the so‑called million dollar questions is we know that there’s a combination of factors that can cause what we call these genetic mutations that then go on to lead to the actual disease.
So whether it be CLL, which you alluded to, or AML, age is a big factor. So as all of us grow older the unfortunate reality is as our cells divide they accumulate genetic changes that (?) Inaudible repair, so that’s one thing that happens to all of us. Environmental and genetic factors play a big role, and I think the new emerging field in this is what patients would ask us, why did I get this? We would say, well, you were unlucky. You had this mutation. Something happened.
But now we know about 10 to 15 percent of leukemias actually have a genetic or what we call an inherited component. So if you talk to patients they would have‑‑some patients have a very strong family history, not just of leukemias or lymphomas, which are blood cancers, but other cancers. And I think it’s really important to nail that down and explore the inherited aspects because for patients like you or Don, if you have kids and grandchildren, you know, those have far‑reaching implications down the road.
However, 85 percent of these leukemias are what we call sporadic, meaning they just came about because of environmental and genetic factors that sort of played a role in one or two cells developing the mutation and then there is a competitive advantage for these cells. They start growing, you know, without any checks and balances, and once that happens they start crowding out the healthy cells in your marrow and they sort of replace, as you said, the nice, healthy cells in your bone marrow that should be making your red blood cells, white blood cells and platelets.
And sometimes the analogy that’s given is you see these weeks on a lawn and once the weeds start growing they kind of take over all the healthy grass because they compete for nutrients and water, and then all you get is a lawn full of weeds.
Okay. So somebody comes to the emergency room, like Don looked sick. Is it fatigue? Is it bleeding? Is it just what‑‑how do people present, as you doctors say?
So typically patients present with this feeling that they’re not‑‑they just don’t feel well. Typically it’s fatigue. Sometimes they’ll notice bruising or spots all over their bodies. They’ll notice that their gums are bleeding easily when they brush their teeth or they have nosebleeds when they’ve never had them before.
A fair number of patients actually present with an infection, so a sew throat that doesn’t seem to go away. They get swabbed for mono, and the practitioner sees these weird cells in their blood, and they think, well, maybe this is mono because they’ve had fatigue, sore throat and some lymph nodes, and so that’s the way people present.
Sometimes people present really sick, with a pneumonia or another infection, and then that’s when you go to the ER and you come into the hospital and it’s like, oh, wow something else is going on.
Okay. So they get to you, let’s say, at Oregon Health and Sciences in Portland, a major university center, and you run this genetic panel. Now, it’s seven days. So, first, what’s going to happen while you’re trying to figure out what version of AML they have and whether you have a therapy.
So let’s just talk about that. What happens first, and then based on the information what happens then?
So it really depends on what you said before is how sick you are and what type of AML that you have. So I would say even now about 30 percent of our patients don’t come through the ER and are not that sick. They come through an outpatient clinic appointment where they’ve had low blood counts, they’ve been tested, there’s some testing that is done which indicates they may have leukemia, and they actually come to my clinic.
And if they come to my clinic and they’re relatively what we call stable we will perform all this workup, as we call it, as an outpatient. So we’ll to the bone marrow biopsy as an outpatient. We will let them be at home for those seven days so they can sort of start preparing for, hey, maybe there’s something going on and this will need some length of treatment in the hospital or multiple visits to the physician, in which case if you’re working you need to start thinking about time off and preparing, and if you have kids how to they get to their activities. So all the different things that people are struggling with when they get this diagnosis. So that is about 30 percent of patients.
And in those seven days while they’re waiting, sometimes it’s longer, we keep a really close eye on their blood work. So if they live close to a hospital or a clinic we make sure they go to the clinic at least two or three times a week to see what their white blood cells, platelets and red blood cells are doing, and then we get those results. So we monitor them before they come back to get the final diagnosis and what their position is.
If it’s somebody like Don who ended up in the hospital really sick, then they stay in the hospital while we’re doing this testing. Typically they will get blood. They will get platelets. They would get what we call a workup, meaning we will check their heart, their kidneys, their liver. We would put what we call a central line, meaning a line or an IV that can stay in their bodies for a longer length of time that can allow them to get treatment and allow them to get blood work and transfusions. So all this is happening in the background while we are figuring out the subtype of AML.
The other thing that we also do at that time is we collect what we call HLA typing, and this is to figure out what the tissue type of the patient is. So like Don, when he went on to the transplant it’s really important for us to know this beforehand. So while the patients are getting treatment in the hospital we can see if they have matches. So does your brother or sister, can they be a match for you to donate bone marrow, or does it have to be somebody through Be the Match, as Don said, would that‑‑would it be what we call an unrelated but matched donor that would then be an option for you in the future.
Okay. So now the testing comes back. This next generation sequencing, which is so cool now to see your cancer genes, what cancer genes are active, what could be driving your acute myeloid leukemia, and it says this gene. And I know they have a lot of different letters, IDH, FLT3. You could probably name a whole bunch others that different drugs have been developed for. So it comes back with this letters and you say, ah‑ha, if we have a drug that targets that we can tamp this down. Right?
Are these drugs infused? Are they pills? My understanding is now you have some pills that people can take as well.
So I think that’s one of the really cool things moving forward is most of these new targeted agents are actually oral, so medications, so pills that patients can even take at home to treat their leukemia.
So just to back up a little bit, once we get back this genetic testing and we know their mutations and like you said IDH1, IDH2, FLT3, these are all mutations that can be targeted, we also determine a little bit‑‑and this can be somewhat arbitrary but is determined more by the patient, their age, their ability to, you know, how able are they to do their day‑to day activities? Are they somebody who really is not even able to go to the grocery store without being really tired? We call it, for lack of a better word, performance status. How do they do in their everyday life?
So we take all these factors to consider two broad categories: Is the patient what we call fit versus, and I know this is not the kindest word, we call it unfit. And I think those broad categories then lead us to what type of therapy should the patient get. Should they get what we call intensive induction, meaning we still give them very broad chemotherapy to kill all the leukemia, but now we’re adding targeted therapy to the chemotherapy so that you give this double‑whammy? You knock them with chemo, and you knock it also with the targeted therapy.
However, if you happen to be 85 and you’re a very functional 85, maybe, but you’re not somebody whose organs can tolerate this heavy intensive chemotherapy or a transplant in the future, then we go with what we call more therapy that’s what we call less intense even though it might be IV, but then we add these targeted agents which they can take at home as a pill and then they’re not in the hospital as much. They get this therapy as an outpatient while they’re getting treatment for their AML. So it’s very different based on our goals of care, the patient in front of us and what mutations they have.
Okay. So increasingly now you may‑‑maybe somebody would get some chemo, working on approaches where you don’t lose your hair.
You don’t develop mouth sores.
Or ad nauseam. You’re working a lot on lowering the toxicity.
And, Don, I know you went through that you’re being prepared for a transplant, heavy‑duty. But that’s been ameliorated to a greet degree for many people.
And then somebody may be on a pill. Now, do you have a growing range of treatments so if you try one and it doesn’t work or it doesn’t last you have something else? It’s kind of like an antibiotic. The doctor says we’re going to try this antibiotic. No. Your swollen glands and lymph nodes, it’s not going away. Let’s go to this one.
We absolutely do. And I think that’s sort of the next frontier is what we call sequencing. How do you sequence treatments so that you can continue to get a good response even when the patient fails a treatment and the leukemia decides or figures out how to outsmart that treatment? And unfortunately that still happens even with targeted therapies that over time the leukemia figures out a way to survive despite a very targeted approach. And so how do you come back in with a different drug that can still work? And how do you sequence those drugs to give them maximum effect but the least toxicity as you said, to the patient? And those are sort of our next frontiers of clinical trials and therapy.
So at this interim stage, Dr. Borate, one key question: Don talked about the statistics, which were not good when he was diagnosed.
Are you seeing a change in quality of life, and you believe in survival based on everything you’re talking about?
Yep. I’ve seen a huge change in quality of life. And I will say interestingly in AML more than any other disease we have really pushed this aspect in our older patients. Because we have heard loud and clear from patients who are 70, 75, 80, that they want to live. They want to live as long as possible, but they also don’t want to spend all that time in a doctor’s waiting room in or the hospital. They are very, very determined to have a good quality of life and enjoy whatever it is that they want to do.
And I think we have really worked hard to deliver that with our targeted therapies, and I want to say the results are astounding. I have an 89‑year‑old right now who celebrated his birthday and has been outpatient for the last year since his diagnosis. An 85‑‑oh, an 86‑year‑old, and we celebrated her birthday on (?) Inaudible where she took a pill for 13 months and is in remission and is talking about taking a trip to Bolivia.
So to me these are huge success stories for my patients because I have a soft corner for my older patients. They have struggled, they have sort of supported their kids their whole life, and it’s their time now. And I think that’s so important to deliver that to them.
Well, Dr. Borate, first of all, thank you for your devotion to patients. We’re going to talk more about treatments. We’re going to be taking your questions from our audience along the way, firstname.lastname@example.org.
Don, you have been in Team in Training with (?) Inaudible, run I don’t know how many marathons, and it’s for research. This must make you feel good that research is paying off.
On this side of the screen I am smiling so, so huge, and I’m actually very emotional about it. It’s great to hear what Dr. Borate is saying because it gives other people a lot of hope and encouragement. It’s just great to hear because it was not an experience that I would want anyone to go through, and so these are big moments. So thank you, Dr. Borate, for what you’re doing.
And if mom and dad want to go Bolivia or Thailand or Europe or wherever it is their time, as you say, Dr. Borate.
It is their time.
So, Amanda, let me go to you. So the Leukemia & Lymphoma Society has lots of services. Some of it‑‑and your cat’s going to help us too, there‑‑is first of all getting information. Where can I or mom or dad or grandma or grandpa, Uncle Charlie get the right care, okay, state‑of‑the‑art care? But also then as we get to some of these treatments then they say, oh, my god. There’s all this medical care and medicines coming in, and there’s expense. So you all help people with that, too, right?
Yes, absolutely. We hear all the time how expensive treatment can be, and these new drugs are amazing but they do come at a cost. So we have various different options to help patients through a program like copayment assistance that’s available most of the time but is subject to availability. So we encourage people to call us. And if there’s something that we don’t have we will work with the patient to find other options.
It is a big burden to people, and it’s certainly one of the things that people worry about the most. And this does often come from the caregiver because, like we said, the patient may be feeling pretty ill or be in the hospital, so we just encourage you to call and see what’s available.
Okay. Yes, I know. I take an oral therapy for another leukemia, chronic leukemia, and I’m on Medicare, and I have Medicare Part D and I have a substantial co‑pay. Now there are foundations, the Leukemia Society, that depending upon your need can help. And if you’re on commercial insurance and you’re younger and not on Medicare there are other programs that come into play, right, Amanda?
Yeah. We will talk to patients, whether it’s through a nonprofit like us or through the pharmaceutical company directly. And I certainly encourage people when they’re making that transition to Medicare, which often they know about in advance, to call us and we can help talk to you about ways to make that transition a little bit easier because you do find that the cost out of pocket to the patient can sometimes go up when they make that transition.
Okay. Dr. Borate, I have questions for you. Maybe you is tilt your screen down a little. We’re just losing you. There we go. There, that’s good.
Dr. Borate, so you mentioned clinical trials. We talked about research. So you’re doing clinical trials, and many of your peers at other academic medical centers are doing clinical trials, and that’s what led to the approval of these drugs by the FDA based on data that you as researchers and drug companies and National Cancer Institute were able to present. So talk to us a little bit about what’s in the lab, if you will, that you may be offering patients in clinical trials. And then we’ll also understand, Amanda, when somebody is in a clinical trial what costs may be covered, too, okay?
So, Dr. Borate, first, what’s going on in research?
So I think, as you said, clinical trials really pave the way to new therapies. And again I want to have a special acknowledgment and shout‑out to all the patients and their families who participate in these studies because it is a little bit of a leap of faith. You know, sometimes we’re not always sure these treatments will work and they have side effects, so for patients to put their trust in us and sign off for these studies is I think a big deal. So thank you.
When we start somebody on a clinical trial we always collect what we call a pretreatment sample. So we’ll get a sample of their disease before they’ve had any treatment, and then along the way as this treatment progresses we get multiple what we call post‑treatment treatment samples, one to look at the status of their disease, and secondly to send the sample then back to the lab to understand how these new treatments are affecting the disease. You know, what pathways in these leukemia cells are being inhibited so that the cells are dying? What pathways are deactivated, which also helps the cell to die?
And then thirdly, what pathways are being sort of turned on to help the cell resist these treatments. We call them mechanism of resistance and it’s similar to the antibiotic analogy you said where you take an antibiotic for a while and it seems to be working initially but then your body develops resistance to it and so the provider or the doctor has to change therapy because now this drug no longer works for your infection.
And so the same thing happens with leukemia or any cancer, and I think it’s very important for us to observe the samples as the patient progresses through therapy so we can figure out, first of all, why it worked, but also why did it stop working or why did it not work. And I think that’s where participation in clinical trials is so critical because without this valuable information we really can’t move the field forward.
Okay. Amanda, just about costs. So if somebody signs up for a clinical trial might some of the costs be covered?
Yeah. It’s actually a bit of a complicated question, but generally speaking the cost of the actual trial drug is covered through the trial itself. But it is important to talk to your insurance provider because hospital stays and some other supportive care may still go through your insurance.
Okay. So it’s complicated, but it’s something to discuss. Dr. Borate, one other thing about testing. So we mentioned somebody gets to the hospital, and ideally there’s this panel, this next‑generation sequencing done, fast track trying to get the results back to the specialist to decide do you have a targeted therapy or what’s going on, what’s your version of AML.
But cancer is wily, and the cells can change, and the cancer gene that was driving your AML on day one could be different on day 50 or 100.
You would know the (?) numerical better than I. So is retesting sometimes needed if something changes?
Yep. So I think this is a great question, Andrew, and I think it ties into what Amanda said about centers of excellence because this is something we routinely do in our AML patients every time. We sort of look back and see what their disease is doing, and we call it re-staging. And sometimes we see certain genetic changes or mutations come in even when the patient is in remission. When we can’t see the AML we can see some of the background cells acquire different mutations so we can keep a closer eye on the patient as they continue down the road. So I think retesting is one of those things that is not done enough if you don’t have experience with the disease.
Because you’re absolutely right. The disease is wily. It does change. The mutation that was driving your disease to begin with may not be the one driving it when it relapses, and I think that’s really where we need more information, and we need to have this testing done in order to treat the patient appropriately.
Okay. So let’s go back to what leads to AML for a minute. So Don, you worked on golf courses your whole life and eventually became the superintendent of one of the more famous PGA golf courses. Colonial, is that right?
In Fort Worth. But over your years devoted to golf you sprayed a lot of pesticide, right?
And so I think back about whether that may have had an impact on where I ended up with the leukemia. It’s hard to say. I’m sure Dr. Borate would probably agree with that, but it seems to me there could be some correlation, yes.
Probably so. So environmental factors. Dr. Borate mentioned hereditary to some degree. And I want to ask about another thing. I am not just living with chronic lymphocytic leukemia but I have another blood condition called myelofibrosis. And some people with myelofibrosis progress to AML. My understanding was this secondary version of AML was often harder to treat.
And I also understand, Dr. Borate, you’re researching it.
So are the options, is the chance for hope for people who developed this secondary AML?
So thank you for bringing that up. I think secondary AML has always been this sort of thing that people don’t want to touch and especially when you’re looking at clinical trials investigating your new agent because we knew that, hey, if you were treating patients with secondary AML with a newer therapy maybe the results wouldn’t be as good and then your clinical trial results overall don’t look at good.
And to me that is a huge disservice to our AML patients because, as you describe, either because you had a prior cancer, let’s say you had breast cancer and you had chemotherapy for that breast cancer or lung cancer and you survived it, and so you’re a survivor. And 10 years later you develop AML as a result of exposure to prior chemotherapy, which in many ways does things to your stem cells like a pesticide that Don might have been exposed to. (?) Sorry, I apologize.
And so I think the thing that secondary AML has taught us is when a patient develops secondary AML there is a large number of genetic mutations already existing in the patient from their prior chemo, from their prior cancer, from their prior exposures. And so because the treatment is so hard it’s something that we’re looking about very carefully in the lab to understand it much better.
And especially about secondary AML from myelofibrosis or these diseases we call MPNs, meaning myeloproliferative neoplasms maybe essential thrombocytosis, polycythemia vera, all these big names. We have a study here at Oregon Health and Sciences University which combines our targeted therapy. You might have heard about it. It’s called Jakafi is the commercial name or ruxolitinib is the pharmaceutical name, and it targets a mutation called JAK or JAK2. And then we combine it with a chemotherapy we call, just called Vyxeos, which has also been recently approved specifically for secondary AML.
And so we’re taking that approach I describe where we’re combining the therapy that’s already on the market for secondary AML and has shown benefit, but then we’re adding this targeted agent which is also on the market for myelofibrosis but they haven’t ever been combined together. But we’re doing it in a way that’s slow and careful and cautious because, you know, we have to talk about safety, and we want our patients to get the benefit but not the toxicity. And we want to see what this does. The response rates for secondary AML from myelofibrosis are anywhere from zero to 15 percent, which is terrible. And so we really want to improve on that.
Okay. Let’s talk about transplant again. So, Don, you went through a transplant, and I interviewed a transplant survivor years ago who did well afterwards, but he said, Andrew, it is not a walk in the park. Now I know there have been a lot of refinements and you had it a number of years ago now, but what was the transplant experience like?
It wasn’t a walk in the park. As a patient I think we hear what we want to hear, and I didn’t really hear about a lot of the side effects that might occur from having a transplant because I was so focused on just surviving. I thought I had actually skated through the GvHD, the host‑versus‑graft disease resistance, until probably day 30 or so, and I started having presentation on my skin, and I started having issues with my throat, my eyes.
So I had to go through all those additional struggles on top of fighting the initial treatment from the leukemia. So it was tough, and it was something that, it was‑‑it’s difficult to be prepared for that because you’ve already been through all the chemo for the leukemia. I was grateful that the stem cells did what they were supposed to do, which was graft in my body, but the side effects were difficult. They made it quite a challenge.
And you continue to take some medicine related to anti‑rejection?
No, sir. I haven’t taken anything now probably for, for probably six or seven years.
Good. Good. Dr. Borate, just so we understand with a transplant. So you’re getting somebody else’s cells to‑‑you get the chemo to knock back the disease in your body, and then you’re having somebody’s healthy cells be infused to try to take offer the immune system. My understanding is even your blood type can change. I’m B‑positive. I get somebody who is O or something that becomes my blood type, right?
So it’s a whole rebooting and a changeover, right?
Right. I think the one thing I do want to clarify is you mentioned you get a lot of chemo to take care of the disease in your body, but most successful transplants are actually done when you’re in remission, so when the patient is in remission. Because the chemo that’s given is really given to destroy your own existing bone marrow and immune system and to make a home and to make place for these new donor cells that will then come in and survive. If you did not do that then your immune system and your bone marrow would immediately reject any of those stem cells that were being given to the patient.
If you still have disease in your body and a lot of disease, and then you get all this chemo to prepare you for a transplant, the risk of rejection or the disease coming back is actually quite high because when you‑‑when you destroy your own bone marrow including bone marrow that has disease in it and then you infuse somebody else’s stem cells, you have a period of about two to three weeks when you have no immunity. And the stem cells are trying to grow, but if the patient still has leukemia in their body or had disease when you started this process, those disease cells just grow out of control, and they kill all the donor stem cells, and then it’s just not a good outcome.
So we really want the patient to have as less disease, preferably no disease in their body when they get a stem cell transplant. And this is not something that is intuitive to a lot of patients because it’s seen as a treatment for AML, which it is, but you really want to give it when the disease is really under really good control.
Amanda, could you talk a little bit about the support programs that the LLS, the Leukemia & Lymphoma Society, has, and Don I’ll have talk about it as well, so that somebody going through this, first of all they and their family have never heard of this before. They don’t know anybody with it. The treatments can be significant. Hospitalization could be long or not. How do you know you’re not alone? Not just calling you on the phone but there are other resources you have too.
Sure, absolutely. I think, like you said, just knowing you’re not alone it’s really important for people both caregivers and patients to connect with other people who have been through this. It’s very likely until diagnosis a person may have never heard of AML. They just have a vague idea of what leukemia is. So we have ways to connect patients and caregivers with other people.
We have a wonderful program called the Patti Robinson Kaufmann First Connection, and that is a telephone peer‑to‑peer connection. So we will match you with someone of a similar age and gender who has the same diagnosis and has already been through treatment. And they are trained volunteers. We also have in‑person family support groups. We have online support groups, including ones specifically for leukemias, one specifically for caregivers as well as young adults.
We also have an online community, so if you’re not available for the live chats you can post there and connect with people all over the world who have been through a similar experience. While every patient’s journey is really unique there’s going to be some similarities where you can know that you’re not alone. And I think all of these technologies are great because you can even connect while you’re still in the hospital.
And, Don, you are a First Connection volunteer. I’ve done it too, with people with my leukemia. So you talk to people one‑on‑one.
That’s correct. By the way, I do want to add that my blood type did change because of my stem cell transplant.
You’re absolutely right, yeah.
The First Connection program is probably one of the most rewarding things that I’ve done since my treatment and making it through that. To be able to talk to another person that’s going through something that you went through and really just answer any questions they may have is really very rewarding, and I know it’s great for the patient as well.
When I was going through treatment it was wonderful to hear the doctor say that you’re doing well, it was wonderful to have the support from the nurses, but I really wanted to talk to somebody that had gone through is so I could say, okay, tell me about it. What was it like? Did you have this problem? Did you have that problem? So it’s just a great one‑on‑one, as Amanda said, opportunity to help answer questions and hopefully give some additional encouragement to patients.
I want to add some additional resources. So, first of all, the originator of this program is a group called the Patient Empowerment Network. Their website is powerfulpatients.org in partnership with the Leukemia & Lymphoma Society. And we’ve worked with them many times at Patient Power.
Most recently, we did also a program at the big American Society of Hematology meeting, and that’s where all the hematologists, like Dr. Borate, from around the world come and where research is presented and they talk about it. This year there was a lot of AML, and so we sat down and had a discussion with peers of Dr. Borate’s, and that is Dr. Kadia from MD Anderson and Drs. Lee and Dr. Ritchie from Weill Cornell in New York, other NCI cancer centers like where Dr. Borate is.
And so I urge you to take a look at some of these programs. If you go to patientpower.info and just go to the leukemia and then the AML area you can see the replays of these. So that’s another resource for you.
And then I will tell you that some people are connecting on a platform like Facebook, and there are some AML groups there. A couple of caveats we’ll give you about the internet. I’m sure Dr. Borate warns people about Dr. Google. First of all, some of the information sometimes when you just search is not current. And you’ve heard for the first part of this program things are changing, right? And it’s very nuanced. And Dr. Borate may have a meeting with her colleagues tomorrow, and they’ll say, oh, well, now we know this. So there’s no way some of these services can keep up, particularly just general web searches. So be careful about that. That’s why you need to call Amanda because she’s staying on top of that.
The other thing I’d say is in Facebook you may go to an AML group, which is wonderful, people talking to one another, but we’ve talked about all these different situations in AML so one person’s situation may be different from another. So there may be general support, but remember, we talked about it at the very beginning of this program, you need to talk to your healthcare team to get a clear picture of your or your loved one’s situation and have a plan that’s, in this age of personalized medicine, is right for you.
And I’m sure, Dr. Borate, you have people come in sometimes with no information, but often you have people who come in who somehow have wrong information, and maybe you could talk about that, about how people‑‑how can they ask the right questions to get to the right answers.
I think you’ve touched on such an important point because, as you said, patients are scared, their caregivers are scared. They’re looking for information. There’s information that they getting from the providers or the physicians, but obviously there is this need to help their loved one and so there is a lot of Google searching, joining groups.
Some of the big things that we see that are difficult is there’s a lot of information about supplements and alternative therapies, which while I think absolutely can help with many, many things including fatigue, nausea, feeling of well‑being, I think you have to be careful about what that resource is and what studies have been done on it. So I think those are questions that we get a lot and we try our best to have evidence‑based data on these different‑‑they’re like medications because they are something you’re putting into your body and while some are more natural than others, for example, turmeric is one that is used extensively by people. They do interact with some of the other treatments you might be getting for your leukemia.
So just understanding how your supplements are interacting with the treatments that you’re being prescribed I think is important, and there’s some resources that can actually do this in a very evidence‑based manner.
I think going to societies like the Leukemia & Lymphoma Society, we have the ASH, as you said, American Society of Hematology, ASCO, which is the American Society for cancer, these websites‑‑I think the NCI website, the national center for, you know, all cancers, they’re just really great resources that tell you what you’re up against in a very sort of patient‑friendly way that explains the treatment.
And I think something that you guys discussed before, the First Connection resource, I think that is something that‑‑I mean, it’s a resource that is so underutilized because even as a provider who treats AML for many years I don’t have the experience that Don had. I didn’t go through a transplant. I didn’t go through GvHD. So while I can discuss side effects I can’t really present a patient’s perspective, and that’s what they are looking for a lot of times. Just looking at a role model or reassurance that this is what a patient or somebody who looks like me went through and came out on the other side. And, yes, it wasn’t a walk in the park, and, yes, it was awful at times, but he came out on the other side and this was what he needed to do that. I think that is so valuable.
Right. Just one aside. GvHD. You hear all these acronyms. Graft‑verse‑host disease, where those new cells from somebody else are fighting with your immune system. They’re going to win because they did for Don, but it’s a fight, and you have side effects with it that could continue for a long time.
Amanda, what questions‑‑I know it varies by where somebody is in their journey with AML, but what questions do you suggest to people that they ask their doctor or a new center that they go to so that they or mom or dad get the right treatment?
Sure. I think that’s actually a big part of what we do in the Information Resource Center is talk to patients about what to ask the doctor. We can’t always answer their questions, particularly specific medical ones, but we help them get (?) Inaudible to rate that list out to what’s most important to them.
It really does depend on the (?) fees of where they are on their treatment, but an important question, something that Dr. Borate alluded to earlier, is what the goal of treatment is. Is my goal curative, or is my goal to extend my life for as long as I might be able to? Because people are on that borderline sometimes of fit and unfit, and they need to understand which type of drugs the doctors are prescribing for them and why.
And then of course the question of am I a transplant candidate, why is why not? I encourage people to ask why because they may think I’m a great candidate and the doctor says well, actually you know, your cardiac function is very poor and you won’t be able to survive a transplant. I think it’s good for peace of mind to understand the reasons doctors are making these decisions for them.
Amanda, what about second opinions? So even if you’re in a major city there could be one big hospital over here and one‑‑I think like New York. There are more than one NCI cancer center. So what about that? What do you tell people about that?
Absolutely. So AML can be unique in that sometimes there isn’t a chance for a second opinion upon diagnosis, right? Sometimes they go in and they need to start chemo right away. But generally there’s next phase. There’s a maintenance phase or there’s a transplant phase. Great time for a second opinion. I’m a huge believer in second opinions.
With the way treatment is evolving there’s options now. Really there used to be, like we said, for 40 years there was one option. Now there’s many, and so you want to be sure that you’re comfortable with your choice, comfortable with your physician because this is going to be a long journey. No matter whether you have transplant or not this is something‑‑it’s a long relationship, and so we encourage you to call us and we can help guide you to those centers of excellence. Even if you’re at one you may want to talk to a second one as well.
Okay. Dr. Borate, you are a specialist so you’re at a center of excellence. But how do you feel if somebody or a parent or family member says, you know, we’re going to go over here and see what they say. Are you okay with that?
So I think any physician or provider who takes care of patients should really be okay with that because we’re all in this for the same reason and that’s to make our patients better and hopefully cure them. And I think the way we get there shouldn’t be something that you worry about what one person says versus the other. So absolutely.
I do agree with Amanda that sometimes for AML, and fact a majority of times for AML when the diagnosis is made time is of the essence, so unfortunately sometimes our patients don’t have the luxury of being able to go for a second opinion or get a second opinion simply because they’re so sick. They’re in the hospital. Their disease needs to be treated right away.
But I completely agree, once that first step is done I think taking a pause, talking about different options with your current physician and then saying, hey, do you mind if I go to the next center? So for example we’re close to Seattle or California. Just taking a flight and having a conversation and usually the second opinions really reassure the patients and the caregivers that they’re on the right track, and so they can come back to their original center and continue their treatment.
The one caveat I have to a second opinion before starting therapy‑‑or after starting therapy, rather, is once you’ve already received a therapy for AML you may not be eligible for a clinical trial for newly diagnosed AML patients. So we do have patients that come to us after having several cycles of therapy and then want to participate, and unfortunately the way trials are designed you want to get all the information right from the beginning, and so that’s when you enroll on a study when you’re starting your treatment.
With that said, I mean, it is what it is sometimes just because of the rapidity of the disease and the symptoms, but that is if you’re considering a clinical trial very strongly you may want to go to a center of excellence sooner rather than later.
One other point I want to make about clinical trials, because I’ve been in two, and about second opinions actually, is don’t drive yourself crazy. Dr. Borate, and maybe you go to another center, you go to Seattle up the road or California down the road. And then you say oh, no, now I’m going to the Mayo Clinic and then I’m going to Northwestern and then I’m going to New York, you will go crazy, and you will probably start hearing the same thing, right? As well as you went through a lot. So pick a team.
Amanda, any comment you want to make about that? Because I’m sure you have people, they’re very stressed out.
I agree. There is a number of second opinions that’s too many. But I also wanted to say on the clinical trial piece we at LLS have a wonderful service called the Clinical Trial Support Center that can help you find those trials. It’s a team of nurses who do individualized trial searches for people.
Sometimes that can help inform where you go. If you’re debating between California and Seattle and our nurses narrow it down and say, you know, there’s a trial in Seattle you could be interested in, it might help inform where you actually go for your second opinion. And you would reach them the same way you would reach me, through the Information Resource Center.
I want to recap just a few key points for our audience, and then get some closing comments from everyone. So, first of all, remember what you heard at the beginning. You want to, with the help of the Leukemia & Lymphoma Society, you want to get to where they’re really knowledgeable in this changing landscape of AML. You want to be tested or your loved one so that you know what version of AML you have. And if things are changing now that treatment has gone on for a while, retesting to say what’s going on now, and consider all your options.
And Amanda said it just a few minutes ago, so important, discuss your goals for treatment. What kind of life do you want to have? Do you want to just knock it back, take pills at home? Do you want to go to a transplant if you’re qualified for that? You know, these are all the things to discuss with a knowledgeable team.
And consider a clinical trial. And connect with Don or his peers around the country as First Connection people. So just a few key points. So first of all, Amanda, what do you want to leave people with? Probably call the LLS, right? Call.
Absolutely. You know, if you have any questions give us a call. We’re happy to help. We’re there to talk to you and help find those important resources that you need. And also just what a hopeful time it is for AML. When I started at LLS there had been nothing, and now, as Dr. Borate has said, there’s nine new drugs and (?) evolving quicker than we can almost keep track. So it’s a really hopeful time right now.
Okay. Dr. Borate, first of all, we all want to thank you to you and your peers around the world who are doing research, but a final comment you want to say to this audience and family members and patients who are so worried about this diagnosis.
I do want to echo what other folks have said. This is a specialized disease, so reaching out to a center that has experience is I think critical. Even though we might not be able to physically travel at least getting advice from that center, whether it be through your physician or in‑person.
Secondly, I do want to say participating in clinical trials is a wonderful way not just to get treatment but also to get access to new drugs that could benefit you. And the other part of a clinical trial that’s never discussed is just by being in a clinical trial you are monitored way more closely and observed way more closely than if you were not on one just because that’s what a clinical trial mandates us to do. And I think the experience of our patients who are on it is always satisfying, whether the trial is helpful or not. Just the close connection and the follow‑up that they get is just‑‑it’s a great way to be supported through your therapy.
And the last point I want to make is something that Don said. You need a support system. You need your family members. Don’t be shy about calling your sister in Florida or your father or mother that live half‑way across the country from you. This is what family is for. Surround yourself with your family and friends. You need it. You don’t want to do this alone.
Right. And also remember for you as a family member, there is support for you too. Leukemia & Lymphoma Society can help. There are other groups. The cancer support community on Patient Power. There’s a care partner section and even with First Connection volunteers there may be some who can help the family as well.
Amanda, thank you so much for the work you do. Don, final comment from you because here you were treated in 2005 and then took medicines for a while, and you get to speak, but you learned lot today. Hearing all this what do you want to say to our audience?
I just want to say just be encouraged by all the great new technology that’s come down in the last several years. Be encouraged by that. I also want to add to ask a lot of questions. Make sure that the time you spend with your doctor is quality time. Don’t let the doctor leave without a question being answered that’s on your mind. And third, use the resources that are out there that can really benefit you like the Leukemia Lymphoma Society IRC.
All great advice. I want to thank everybody for sticking with us. Remember, there will be a replay of this program. There will be all sorts of video clips. There will be a transcript. All that coming your way. So look for that.
Also look for these earlier programs that we’ve produced with support from the Patient Empowerment Network and with the Leukemia Society that really will even broaden your knowledge.
But we had some great information today. I want to thank our guests. I want to thank you for being with us. I want to thank the companies that have been devoted to research with the physicians like Dr. Borate who have been supporters of this program, Celgene, Daiichi Sankyo, Jazz Pharmaceuticals and Novartis for their support and devotion to the leukemia community.
And remember, please consider clinical trials in this fast‑changing field as they’re learning to combine medicines. Does that help you or mom or dad, grandma or grandpa, so they can live a longer, better life? In Los Angeles with our friends who have been in Colorado and in Texas and in Portland, Oregon, and wherever you are, I’m Andrew Schorr.
Remember, knowledge can be the best medicine of all.
Please remember the opinions expressed on Patient Empowerment Network (PEN) are not necessarily the views of our sponsors, contributors, partners or PEN. Our discussions are not a substitute for seeking medical advice or care from your own doctor. That’s how you’ll get care that’s most appropriate for you.
https://powerfulpatients.org/pen/wp-content/uploads/what-would-you-do.png600600Kara Rayburnhttps://www.powerfulpatients.org/pen/wp-content/uploads/New-Logo-300x126.pngKara Rayburn2019-04-02 16:15:342019-09-02 12:28:45What Are the Current Treatment Options for AML?
“Having a productive day is very subjective; what is productive for one person is not for another”.
Some days, I find waking up, washing and eating productive. Others assess, I am being productive when I do University work. What I have noticed though – is we all have tasks that need to be completed and this can send us into panic mode. The vicious cycle, of where to start and where to finish has a ripple effect – like a child who got denied candy at the fun fair.
If you are someone sat there reading this with a chronic illness, I am sure you have an inkling of the cycle I am talking about. If you don’t well… I sit here, in envy. What I am going to call the ‘ torrential storm cycle’ makes you question which direction to go in first. Anxiety and stress are no strangers, crawling around your body, taking its toll , physically and mentally. This post is designed to stop you in your tracks, so you aren’t continuously interrogating yourself about ability and self-worth.
“I spend 90% of my time in bed, but a chronic illness does not mean accomplishing your goals are not possible”.
Achieving those goals may just take comprise, planning and longer than you anticipated.
5 Ways to have a Productive Day with a Chronic Illness
1. Evaluate tasks ft. the spoon theory
If you haven’t heard of Christine Miserandino’s Spoon theory, it is a great place to start to help you have a productive day. The theory in a nutshell, is that anyone who is chronically ill has 12 spoons each day (each one resembling energy) and spoons are exchanged for tasks. The amount of spoons exchanged will depend on factors such as the length of the task and how strenuous. The point here, is spoon must be used wisely so you don’t burn out. By ordering tasks by importance you can identify what needs to be done on what day and start to put a plan in motion.
In reality, you may find executing a plan is not always possible. However, the spoon theory gives you a general consensus of how much you can get done in a day.
You may find – once you start having a productive day you are at the opposite end of the spectrum. At Uni, I get told a theory is just that a theory. I am taught to challenge theorists view. So it may not be a surprise to hear I wasn’t a firm believer of the Spoon theory at first. I was so productive one day I felt on top of the world. I couldn’t believe my eyes. I had completed an exam, handed in an assignment, found a job, booked a flight, travelled home from Uni and packed for a holiday and cuddled my little bunny.
Shortly, after this semester came to a close – I realised I used the reserve of spoons for months. I had to fly home 3 weeks early from working abroad, quit the job I found and was behind in every subject at Uni.Barely, attending lectures and hospital appointments. What I am trying to emphasise, is pushing yourself one day really can have a detrimental effect on your health.
“You need to work out what is realistic to get done in a day for YOU”.
Which takes me to by next point…
2. Break down tasks
Breaking down tasks makes things more manageable. Something, I am training myself in like a disobedient dog. I am one of those people who seeks to think holistically to even do a task. However, breaking down tasks can relieve stress, because you know you are achieving something – which has got to be better than nothing, right?
I have found people have been more understanding about my illness when they can see that I am trying rather than wallowing in self-pity. The amount you need to break-down a task will depend on its complexity. It may be a case of trial and error, but you know your body better than anyone in time you will have this down to a tee.
If it’s something academic, you could try and break things down with titles and research areas and tie the ideas together later. You may not get the best grades you are used to due to time constraints. However, at least you will pass and can try and work harder when you are feeling a bit brighter on future work. If the task is practical, like cooking, you could do prep at a certain time and then cook later in the day. Or if you’re a little bit cheeky – ask someone to help you to make the task manageable.
3. Follow your Body Clock
Most people would say, sort out your body clock first and foremost. It may work, but it is something I have been trying to do for over 10 years. My body just likes to be up during the night. The fatigue and pain is more manageable after I have digested by one meal per day.
“To have a productive day you must follow your natural body clock”.
You don’t want to set yourself up for failure by taking a U-turn and trying to achieve tasks when your energy levels and pain threshold is low.
“Remember you can always move tasks to another day as long as you’re motivated to accomplish them”.
4. Relax… just not too much
Whether you have a chronic illness or not, everyone should take time to wind down. If you’re fortunate enough TAKE a bath, or go and visit someone who does! Watch a comedy, listen to music or sit in silence, do what works for YOU. I am not saying you are not going to wake up still feeling fatigued because you probably will BUT subconsciously your body and mind is still getting a valuable break and you get a hint of happiness. I find relaxing whilst doing a task slowly usually gives me the right balance. However, this may not work for everyone.
“Just remember, don’t relax too much or you won’t get anything done”.
5. Relieve stress with a pet
Patting pets are proven to having a calming effect on humans (Rodriguez, 2012), which may help you to think more clearly and be more productive! It is ideal if you own a pet and go and give them love when you are stressed and they are in a good mood. If your pet is moody, trust me try hugging your friends’ pet or the other four tips AND come back to this one later. When my pets are hungry they treats me like food and it makes me feel rejected and has the opposite effect. If you cannot keep an animal, I suggest you look out for the nearest dog on your walks or go visit an animal shelter. That way you can have your rare day out, killing two birds with one stone.
This blog was written by Morgan Shaw and originally posted on her blog, Brains & Bodies, here.
Hi world, I am Morgan Isabella Shaw. A second year Business student at Oxford Brookes that suffers from chronic and mental illnesses. Hop over to Brains & Bodies to find out more. On my blog you will find updates about;
-The challenges of living with illnesses
-Raising awareness of illnesses
-Providing advice to the chronically ill
-Providing advice to those who support the chronically ill
https://powerfulpatients.org/pen/wp-content/uploads/5-Ways-to-Have-a-Productive-Day-with-a-Chronic-Illness.png600600Morgan Shawhttps://www.powerfulpatients.org/pen/wp-content/uploads/New-Logo-300x126.pngMorgan Shaw2019-04-01 17:17:222019-09-02 12:28:455 Ways to Have a Productive Day with a Chronic Illness