Suja JohnkuttyHi there ! I’m Suja Johnkutty, MD a conscientious mom and neurologist . My one simple goal is to provide you honest, practical, simple action steps to experience better relaxation in your life. https://betterrelaxation.com
Watch and wait, or active surveillance, often feels like watch and worry to CLL patients. Dr. Brian Hill provides a comprehensive guide to the period of time before CLL treatment begins and shares approaches for managing anxiety.
So, watch and wait is the term that’s referred to for not actively treating a patient with CLL after the diagnosis. As many people probably out there watching know, the diagnosis of CLL is often made incidentally or accidentally through routine laboratory tests that are done for some other reason.
Maybe they are going to have surgery. Or maybe they are going to have just a primary care checkup. And blood count shows too many white blood cells. And everything else is fine. The patient feels normal. There’s no symptom. But it leads to a referral usually to a hematologist who then does more testing and makes a diagnosis of chronic lymphocytic leukemia. The word leukemia is very scary because it often conjures up images of acute leukemia which is a disease that can make people very sick very quickly.
We’re taught in much of medicine and in much of cancer that early diagnosis and early treatment is very important. And it is very important for many conditions – breast cancer or we’re taught let’s get our mammograms.
And have an early detection and immediate treatment to cure the breast cancer. Similarly, colon cancer – get your colonoscopy, get your diagnosis sooner rather than later. And have surgery so you can have a higher likelihood of a cure. In the case of chronic lymphocytic leukemia, it’s never been shown despite multiple attempts over many decades, that treating someone with CLL is – earlier, is going to impact the outcomes and the big picture. But we do know that treating CLL earlier can lead to more side effects earlier.
So, in other words, if you feel fine and your blood counts are just a little abnormal, and there’s not compelling indication to treat, we can safely observe patients until an indication for treatment exists. And what I tell patients is that if we treat today, the treatment will work.
If we treat tomorrow, the treatment will work. And if we treat in five years, the treatment will work. So, there’s – we have very good evidence that delaying treatment until you need it does not compromise the likelihood of the treatment working. So, it’s a little bit of a different mindset from other types of cancer where we are taught to treat early and immediately. So, a lot of times people will call it watch and worry instead of watch and wait, and there’s a lot of anxiety about that.
Again, their diagnosis has the word leukemia in it. It can be a very scary time. And it takes a little bit of trust to be convinced that you don’t need to be treated just because you have it. And that’s often times when we do get second opinions if the first hematologist/oncologist says it’s okay to watch it and wait. We don’t need to treat. A lot of the time people then seek another opinion to confirm that’s accurate. And in most cases – I would say 90% of the time when I’ve had a second opinion for a patient who’s been recommended to watch and wait, I typically concur with that recommendation.
So, during watchful waiting or – I like to call it active surveillance because it’s not that we aren’t doing anything, we are surveilling or monitoring. And the two things that we monitor are symptoms and blood counts. So, it sort of begs the question that many people ask which is, “If you are not going to treat me now, when will you treat me? When will I need to be treated?” And the first indication – the first thing we look at is symptoms. So, if you have symptoms of significant fatigue to the point where you are really having a difficult time functioning.
Or if you have drenching night sweats that wake you up from night and make you change your nightclothes. Those type of symptoms would push us to treat. So, those are the things that are being asked of patients at their regular follow up which is usually every two or three months initially.
And sometimes can be spaced out to every four to six months if things are stable. But usually during the first year you want to be checking on folks every two to three months. Weight loss would be another symptom to look out for – sort of unintentional weight loss. The other thing we monitor is the blood counts. So, with a simple CBC or complete blood count, we can see what is happening with the white blood cell count which may and often goes up.
And a lot of folks focus on the white blood cell count and its trajectory and how that is rising. Some people’s white blood cell count can fluctuate. Others can stay relatively flat. And some people do have a continued rise on the white blood cell count. The white blood cell count in and of itself is not the final reason to recommend treatment.
But with time, as the white blood cell count goes up, we sometimes see the other numbers going down. And actually, the other numbers going down are the ones that are more important. Those numbers are – the red blood cell count measurement which is usually measured by hemoglobin concentration or hematocrit. And then the other is the platelet number. So, if either the hemoglobin or the platelet number gets below threshold, those are typically indications for treatment.
So, during this period of observation or active surveillance – watchful waiting, whatever term you choose. This can go on for years.
And it can be associated with anxiety. So, trying to do things to cope with managing anxiety is important. Other things that many people are interested in are – is diet. So, do we know of a particular food or food group that we should focus on? Or is there something we should avoid? And the short answer to that is that many – it’s a difficult topic to study. As you might imagine, diet can be so varied around people. And in a typical week the average person eats so many different types of foods that it’s difficult to focus in on one particular thing.
What we can say is that in general for health, clearly fresh fruits and vegetables are the best source of nutrition. And also, are best for your health.
Avoiding processed foods and processed meats and other foods that are high in saturated fats is probably important in general for your health. Although we can’t say specifically that it’s definitely going to make an impact in the white blood cell count or the trajectory of the CLL. In terms of supplements and natural products, many people are interested in this topic. And again, it is a difficult one to study. Some of the natural products out there are purified forms of things from plants and other ingestible herbs and so forth.
But the problem is, is that if you take any component – even if it’s natural occurring, take it in large quantities it can lead to other problems. There was a well-known study from – that studied the impact of green tea extract on the white blood cell count.
And if you took large quantities of green tea extract, it seemed as if it did sort of lower the white blood cell count a little bit. But some people also had abnormalities of their liver function as a result. So, I don’t recommend green tea extract. And I instead say, “If you like tea and you want to drink green tea, I think that’s probably fine.” But I wouldn’t do it in excess. And just maybe try to incorporate it into a balance diet otherwise.
https://powerfulpatients.org/pen/wp-content/uploads/Not-to-Worry-Your-Guide-to-Watch-and-Wait.png600600Kara Rayburnhttps://www.powerfulpatients.org/pen/wp-content/uploads/New-Logo-300x126.pngKara Rayburn2019-10-28 22:05:472019-10-30 15:55:33Not to Worry! Your Guide to Watch and Wait
Patients should consider seeing a CLL specialist because oncology is a very complicated field. There are many different types of cancers that oncologists treat. And particularly in smaller hospitals, maybe with general oncologists who see lung cancer, colon cancer, breast cancer and CLL as well as many other types of – patients with many other types of problems. It’s very difficult to stay 100% up to date on all those fields. All of oncology is very rapidly evolving.
And the progress that’s being made in all the diseases I mentioned is very fast paced. And so, things change. And there’s new data emerging all the time. And CLL specialists or lymphoma specialists are able to stay more up to date on these topics. And usually that can result in maybe better options for patients.
So, we often get second opinions or third opinions for patients with CLL.
And one of things patients are understandably concerned about sometimes is the impact this will have on their primary oncologist. Maybe they are from a smaller town or have a smaller hospital. They have an oncologist, hematologist, gynecologist who they like, and they trust, and they don’t want to hurt their feelings or damage the relationship because they may need their primary or local hematologist, oncologist to help them if they are sick or something goes wrong.
So, I think that most oncologists recognize that – again, the field is very complicated. And it’s common for people to seek opinions from referral centers. So, I would say the best thing is to be up front about it. And explain to their primary that it’s not that they don’t like them or don’t trust them.
But it’s important – it’s their health. And they really want to make sure they have another set of eyes. And I even sometimes encourage my own patients that if they have questions about what I’m talking to them, to welcome another opinion. And if there’s good communication about it, I don’t think that you should be concerned about the sort of hurt feelings aspect of it.
https://powerfulpatients.org/pen/wp-content/uploads/Why-You-Need-a-CLL-Specialist-1.png600600Kara Rayburnhttps://www.powerfulpatients.org/pen/wp-content/uploads/New-Logo-300x126.pngKara Rayburn2019-10-28 13:04:362019-10-28 13:04:36Why You Need a CLL Specialist
Okay, well we’ve talked about a lot of treatment and side effects and myths. As an informed patient, I may want to go out on the internet and find out all I can about CLL. What should I be looking for? What should I be careful about when it comes to online awareness and health literacy?
Dr. Javier Pinilla-Ibarz:
Very, very important topic that I love to really discuss with my patients. I always say that some patients kind of intoxicate themselves with multiple websites and with different backgrounds.
I think we – I do recommend them to really go to the websites, to the websites who really provide a very fair and really clean and important information. I would definitely – we were discussing about the Leukemia Lymphoma Society, CLL Society, Patient Power, to really – National Cancer Institute’s website, places that they have very well filtered information that we can really give to the patient. There is no doubt there’s many others not in this list, but I think we always have to be aware that there’s other websites that may not really provide really, really a good information or may really confuse our patients. So, I like to always really go to the sources that I really trust the most.
Yeah, so reputable sources and always checking with your doctor, obviously, about things that you’re considering.
Dr. Javier Pinilla-Ibarz:
Absolutely. Absolutely. I always tell to my patients, “You go there, you look at that, you read, but then after that you have a question. Come because sometimes you may have misconceptions.”
https://powerfulpatients.org/pen/wp-content/uploads/How-to-Learn-More-About-Your-CLL-1.png600600Kara Rayburnhttps://www.powerfulpatients.org/pen/wp-content/uploads/New-Logo-300x126.pngKara Rayburn2019-10-21 16:20:582019-10-21 16:35:09How to Learn More About Your CLL
What are the things that you’re thinking about when you’re considering treatment for your patients, when you’re making those decisions?
Dr. Javier Pinilla:
Well, I think it’s important to really notice and to really understand my patient, is that we need to provide education. We need to provide education, and obviously, every – many, many patients ask me, “Doctor, what I should do?” Right?
But I think it’s very important for me to understand what is the goals of every patient, right? Age, comorbid condition, way of life, people like to travel versus staying in the same place. So, I try to really educate about the options because we are very lucky that we have multiple options. We also understand – so, what is gonna be the difficulty is to really get therapy A versus therapy B and how much control or monitoring they require, and finally also, as mentioned before, to try to customize therapies for different patients.
I always say that – we discuss in the beginning that not everyone with CLL requires therapy at the beginning. However, when people require therapy, not everyone requires therapy for the same reason. Some people may require therapy because they are anemic, okay, extreme anemia. Why? Because their bone marrow cannot really produce enough red cells or even platelets. Why? Because they is full of CLL cells.
So, those patients in my opinion, they can really do very well with strategies as BCL-2 inhibitor in combination and alone. Why? Because these drugs is able to truly and very, very efficaciously really eliminate the CLL.
So, we go into another scenario. Patient with very high, bulky lymph nodes in the neck, axillary and abdominal, for example, with enlarged spleen who may have very, very severe B-cell symptoms. We note that we cannot apply anything. There’s no doubt that introduction of Bruton’s tyrosine kinase inhibitor or even – is extremely successful in reducing the symptomatology very fast and shrinking the lymph nodes in a very short period of time. So, again, I would say that it’s black and blue or like a black and white and – different.
Black and white.
Dr. Javier Pinilla:
Black and white. Thank you. So, but the truth is different patients may require different strategies, and obviously, patients’ preference are really, really important.
Patient may come back to be in therapy for life, maybe patient maybe don’t care. Patient may really, really, really want specifically shorter therapy. So, I think we need to really understand that in the options and start to work with them, also depending on the presentation on the needs for therapy.
https://powerfulpatients.org/pen/wp-content/uploads/Tips-for-Determining-the-Best-CLL-Treatment-for-You-1.png600600Kara Rayburnhttps://www.powerfulpatients.org/pen/wp-content/uploads/New-Logo-300x126.pngKara Rayburn2019-10-21 15:19:432019-10-21 20:41:18Tips for Determining the Best CLL Treatment for You
It sounds like we have made tremendous progress with CLL. What kind of clinical trials should patients be investigating? What are they – what’s out there?
Dr. Javier Pinilla:
Well, there is no doubt that a lot of people until now were really looking for venetoclax front line clinical trials. Now it’s available in the clinical practice. However, we’re still trying to figure out combination of drugs, right? For example, in this case, I have mentioned we have a very good drug like ibrutinib in front line. We have all the BTK inhibitors that are coming up such as acalabrutinib. We have other PI3K inhibitors that are being not very successful in the front line, right to the second line, like idelalisib, duvelisib, even copanlisib.
And other drugs, like I said, ibrutinib. So, we have a plethora of drugs, really available as clinical trial outside the ones that have approved. However, one of the things that we are really starting to explore in the recent year is how we combine all these mechanisms of action. The most typical combination that we are really now under trial is the combination of two or three drugs, as happens in many other forms of cancer.
So, this combination of these three – some of, two or three of these drugs, is very, very well studied now in an integral trial, the ECOG, the alliance trial, we gonna start to see those trials, and of course, our patients in front line will have the opportunity. Besides that, we gonna see more and more trials are going to combine patients who are already in chronic therapy with ibrutinib with a second drug, with the goal to in the future be able to discontinue therapy because it’s one of the issues that ibrutinib has these days. Patient takes the drug for life.
https://powerfulpatients.org/pen/wp-content/uploads/What-You-Need-to-Know-About-Developing-CLL-Research-1.png600600Kara Rayburnhttps://www.powerfulpatients.org/pen/wp-content/uploads/New-Logo-300x126.pngKara Rayburn2019-10-21 15:06:552019-10-21 20:47:37What You Need to Know About Developing CLL Research
Dr. Brian Koffman, co-founder of The CLL Society, explains its mission and goals. Dr. Koffman reviews programs and services that assist chronic lymphocytic leukemia (CLL) patients and their loved ones.
Dr. Brian Koffman is the cofounder, chief medical officer, and executive vice president of The CLL Society.
Hi, I’m Dr. Brian Koffman. I’m a retired family doctor, and I’m the cofounder, chief medical officer, and executive vice president of the CLL Society. And, what, you ask, is the CLL Society? Well, the CLL Society is a 501(c)3 not-profit that focuses on the unmet needs of the CLL community in terms of supporting, educating, advocating on behalf of, and researching what needs to be done in the CLL community.
The CLL Society is very proud of the programs that we offer. So, among the programs that we offer, the backbone is a website that covers everything from the very basic kind of information – frequently asked questions – to really the latest research that’s coming out.
Also, on the website, CLLSociety.org, we have a whole toolbox, and in that toolbox, there are lists of acronyms. There are links to other CLL resources. There are links to CLL experts around the country. There are spreadsheets to help you with your lab sheet – lab results so you can follow them and mark the trans-Excel spreadsheet. We also do trial educational forums across the country with places like MD Anderson, Dana-Farber, or the National Institutes of Health.
And, we have 30-plus support groups in Canada and the USA that meet generally on a monthly basis, so there’s a peer-to-peer interaction, and we provide education to all of those. And, one of the programs that I’m most proud of is for patients who don’t have access to an expert. We provide free virtual consultations with CLL experts from the top institutions through a Zoom-type platform that’s HIPAA-compliant so patients can ask their questions to a remote expert, that expert reviews their medical records, and then to their local hematologist so they get the benefit of a consult that they wouldn’t otherwise.
https://powerfulpatients.org/pen/wp-content/uploads/How-Can-The-CLL-Society-Help-You_.png600600Kara Rayburnhttps://www.powerfulpatients.org/pen/wp-content/uploads/New-Logo-300x126.pngKara Rayburn2019-09-25 14:38:032019-10-02 12:17:26How Can The CLL Society Help You?
Chronic lymphocytic leukemia (CLL) patients may be hesitant to ask for a second opinion to help guide their care and treatment choices. Dr. Brian Koffman shares his advice for confronting fears and becoming a confident self-advocate.
Dr. Brian Koffman is the cofounder, chief medical officer, and executive vice president of The CLL Society.
It’s a relatively rare cancer, and most hematologists and oncologists are busy taking care of the more common cancers, like breast, colon, prostate, or lung cancer.
So, they don’t really have a lot of experience compared to a CLL expert who only sees CLL patients, or more than half their practice is CLL patients, in terms of taking care of those patients. There are roughly 20,000 hematologist/oncologists in the USA, and there are roughly 20,000 new patients diagnosed with CLL a year, so if you do the math, you can figure out a community hematologist might be seeing one new CLL patient every year.
So, you wouldn’t see a surgeon who does one hernia repair a year, you’d see one who does many every week. So – and, it’s not just that these people have more experience. There’s research that shows that there’s a survival benefit to seeing a CLL expert, and people live roughly two years longer – based on some old research – by just having an expert as part of their team.
Above and beyond that, CLL is being revolutionized in how it’s being treated, and there’s all kinds of new therapy, and what the best treatment today will be upstaged by a better treatment next month, perhaps. So, unless you’re really focused on CLL, you’re not gonna be aware of what the latest data, what the latest research is, so it’s critically important because they’re on top of what the latest research is, they’re on top of what the latest clinical trials are, they’re on top of the best way to use the new medications that are available, and they provide you with significant survival advantage and management of some of the potential complications with CLL.
So, some people are concerned about getting a second opinion because they’re worried that it might portray to their doctor that they don’t have trust in their judgement or that they’re not happy with the care that they’re getting. Well, as a retired physician, let me assure you that most doctors are very thick-skinned, and we generally welcome people getting another opinion – a second opinion – and medicine is collaborative, and so, most doctors aren’t hesitant about you doing that, and welcome that. Bluntly, if you have a doctor who doesn’t want you to get a second opinion, that would be, for me, a real urgency to get a second opinion.
If hesitant or nervous about getting a second opinion, what I would encourage you to do is think hard about what – whose skin is in this game. Who is the person who has the disease? Who is the person that’s gonna benefit from getting that extra information? So, what is the worst that could happen? The worst that could happen is that you could see the expert, get an opinion that’s identical to your own physician’s, and that just inspires confidence in what’s going on.
The other thing that could happen is there might be an alternative that’s more attractive – less toxic, more effective – and wouldn’t you kick yourself if you hadn’t taken that chance and pursued getting that extra information? So, it’s – every medical decision should be a shared medical decision, and it’s all right as patients to ask for that second opinion and just…not to be hesitant about doing it.
Really, again, it’s rare that a doctor is gonna object to you doing that, and if your doctor objects, then I think you’ve gotta look at what that means, and especially in view of the data, there’s a survival advantage to getting a second opinion.
https://powerfulpatients.org/pen/wp-content/uploads/Nervous-About-A-Second-Opinion_-How-to-Confront-Your-Fears.png600600Kara Rayburnhttps://www.powerfulpatients.org/pen/wp-content/uploads/New-Logo-300x126.pngKara Rayburn2019-09-25 14:36:202019-10-02 12:04:20Nervous About A Second Opinion? How to Confront Your Fears
Last week, we hosted an Empowered #patientchat on leveraging social media for patient advocacy. The #patientchat community came together for an engaging discussion and shared their best advice and tips.
Top Tweets and Advice
Care Coordination Means Everyone Is Working Together
You Are Your Own Best Advocate
Work For What You Deserve
https://powerfulpatients.org/pen/wp-content/uploads/Leveraging-Social-Media-for-Patient-Advocacy-patientchat-Highlights-1.png600600Caitlin McDonaldhttps://www.powerfulpatients.org/pen/wp-content/uploads/New-Logo-300x126.pngCaitlin McDonald2019-06-21 18:17:152019-09-02 12:28:54How Does An Empowered Patient Approach Care Coordination? #patientchat Highlights
Dogs and humans have shared a special bond for over 12,000 years. Clinical research has shown that dogs increase quality of life, finding that those living alone with a dog have a 33% decreased risk of death. A study published by the Complementary Health Practice Review also found that pet owners are likely to have lower blood pressure, better cognitive function, and decreased anxiety than their non-pet owning counterparts. For those fighting along term or chronic illness, spending time with a dog can have broad health benefits for both the body and the mind.
A long term hospital stay is difficult for patients, particularly those in critical care units. Even physicians with exceptional bedside manner can only do so much to mitigate the clinical nature of a hospital room. A study published in Critical Care shows that animal therapy can help ICU patients overcome the mental health issues associated with an extended hospital stay. Bringing in a dog to engage with patients breaks up the monotony of the hospital, and improves mood. 74% of pet owners report improvements in mental health, showing that dogs lessen feelings of loneliness and isolation.
Dementia And Alzheimer’s
Patients in nursing homes go through many of the same problems as those battling in an ICU. Nursing homes pose a particularly great challenge for those with dementia and Alzheimers, as unfamiliar settings and faces can cause distress. A promising study published in the American Journal of Alzheimer’s Disease and Other Dementias shows that dementia patients enrolled in animal-assisted therapy had decreased levels of agitation and greater social interaction than a control group. Notably, many of the patients involved in the study had owned dogs in the past. A key part of treating dementia-type disorders is involving patients in activities that they have enjoyed over the course of their life. For animal lovers in nursing homes, playing with a dog for even a few hours a week can have a massive impact on their quality of life.
Exercise And Physical Fitness
Most dogs are seemingly boundless, furry balls of energy – particularly high energy, social breeds such as Black German Shepherds. Walking and playing with a high energy dog is necessary for their happiness, and comes with the obvious benefit of weight loss and a decreased chance of diabetes for people as well. The benefits of playing with a dog can be much broader than weight loss. Exercise is a vital part of physical rehabilitation, and has shown to cause remission of major depressive disorder on par with antidepressants in clinical trials. Coupled with the effort required to keep them healthy, a dog can give a person recovering from an illness a greater sense of purpose, which helps patients mentally as well as physically.
Registering a therapy dog requires a bit of work, but is a worthwhile vocation for both dog and owner. While medications and in-patient care are necessary for many illnesses, a visit from a dog can help make the arduous process of getting healthy a little less taxing and far more rewarding.
https://powerfulpatients.org/pen/wp-content/uploads/Four-Legged-Physician.png600600PEN Editorial Staffhttps://www.powerfulpatients.org/pen/wp-content/uploads/New-Logo-300x126.pngPEN Editorial Staff2019-05-06 17:19:132019-09-02 12:32:09Four-Legged Physicians: How Dogs Can Aid Patient Therapy
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
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
Data from over 20,000 people with cancer found that one in ten patients were also affected by depression. Helping patients to deal with both the physical and psychological side effects of living with and recovering from cancer needs to be a necessary part of their treatment. Many studies have found that art therapy is a great way to help cancer patients deal with how they’re feeling, including reducing depressive symptoms and physical pain, while improving their outlook on the future and making them feel listened to.
Art therapy helps to reduce pain and depression
Many studies have looked into the positive effects art therapy has on mental health in cancer patients. 1,500 participants were involved in research by the National Institutes of Health and they found a very clear link. Art therapy helped to reduce anxiety, depression and physical pain in patients, and most patients also reported a general improvement in their quality of life. The research suggested that the emotional benefits lasted as long as the therapy, but a reduction in pain was seen in patients afterwards too. However, another study found that the improvements in anxiety and depression symptoms were long-term.
Art therapy without a professional
Unfortunately, not everyone gets the opportunity to work with a professional art therapist when they’re living with cancer or they wish to continue once they’re home. People can still benefit from the effects as it’s easy to do at home by yourself. Art therapy will vary depending on the individual’s preferences as some people prefer to make or listen to music, others like to draw, paint or write, and some like to make things, like sculptures. It really doesn’t matter which art medium is chosen as the person will still be expressing themselves. For example, drawing a person’s face can be therapeutic as it can help to think of a loved one, or it can be symbolic as the facial expressions can illustrate emotions that may be difficult to discuss.
Benefits during chemotherapy and radiation treatment
Art therapy has been found to be useful during chemotherapy in three main different ways. One study found that art therapy was a relaxing and creative outlet, patients felt they were listened to more and they had a way of expressing their emotions and the opportunity to find meaning in their life. Another study looked at how women receiving radiation treatment for breast cancer could benefit from art therapy. Their overall health improved, along with their quality of life, physical health and psychological health.They also had a better body image, coping with physical side effects from treatment improved and they felt hopeful about the future.
Art therapy has the potential to be a powerful tool for helping people to live and deal with cancer, both physically and psychologically. It’s worth discussing medical professionals involved in your treatment about the option of art therapy to see what they can offer, but you can always start your own creative projects at home to help you heal.
https://powerfulpatients.org/pen/wp-content/uploads/Using-Art-Therapy-To-Cope-With-Cancer.png600600PEN Editorial Staffhttps://www.powerfulpatients.org/pen/wp-content/uploads/New-Logo-300x126.pngPEN Editorial Staff2019-02-13 17:02:032019-09-02 12:32:05Using Art Therapy To Cope With Cancer
Treating cancer often involves treating multiple symptoms, both physical and emotional. The symptom of pain, however, has been highlighted as one of the most critical due to the effect it can have on recovery and overall mental well-being. Pain is seen in approximately 25% of newly diagnosed patients, 33% of those having active treatment and up to 75% of those with advanced disease according to The American Pain Society. The World Health Organization have also identified cancer pain to be a global health concern, and also mention that a large percentage of patients are not adequately treated for pain.
While the normal regimes of medication treatments are usually prescribed by a variety of healthcare professionals, some elements of the pain or personal circumstances can be overlooked. In some cases the clinical approach doesn’t always work, leading many patients to look for alternative or holistic approaches to managing their pain.
Acupuncture, Reflexology and Art Therapy
Known as a physical therapy, medical acupuncture is an evidence-based medicine. It involves inserting sterile needles into certain points in the body which then stimulates the nerve to release natural chemicals which in turn give you a feeling of well being. Acupuncture, used alongside established drug therapy, has been shown to be most effective.
Reflexology is a type of massage that focuses on applying pressure to the hands and feet. There is no scientific evidence to support its use, but many people have reported positive outcomes in managing their pain. The belief is that having your feet and hands massaged in a specific way stimulates certain organs in the body which allows for the natural release of the body’s healing process and energy pathways – similar to the way acupuncture works.
Art therapy is a type of mental therapy that helps channel your focus away from the pain itself. “Art therapy does not replace the need for pain medication, but it can be used as an effective complement and reduce perceptions of pain experiences,” says Kelsey A. Skerpan, an art therapist with Harvard-affiliated Massachusetts General Hospital.
Furthermore, a study done in early 2018 and published inThe Arts in Psychotherapy looked at approximately 200 people who had been hospitalized for pain and found that just 50 minutes of art therapy significantly increased moods and lowered levels of pain.
The Benefits of Exercise
Depending on the stage of cancer you’re at and the treatment you’re having, exercise may be an option to help with chronic pain. Exercise regimes can be specifically tailored depending on your personal circumstances. Studies have shown that aerobic exercises like running, walking, cycling and swimming can have a positive influence on the way individuals react to their pain, resulting in effective pain management in the long-term.
The Importance of Sleep
Sleeping is the body’s natural way to rejuvenate and heal. If you’re living with chronic pain due to your cancer, a good night’s sleep may be difficult to achieve. Some medicines used in the treatment of cancer can also affect your sleep. To help get a better night’s sleep, try and be active during the day, avoid caffeine and carbonated drinks at night or sleep on a special mattress that curves to the shape of your body.
Pain can be difficult to manage if you have cancer. Speak openly and honestly about your symptoms with your doctor or nurse. If you’re planning on trying any therapies or alternative ways of managing your pain, always check with your healthcare team first.
https://powerfulpatients.org/pen/wp-content/uploads/Non-Medical-Remedies.png600600Kara Rayburnhttps://www.powerfulpatients.org/pen/wp-content/uploads/New-Logo-300x126.pngKara Rayburn2019-01-15 17:14:312019-09-02 12:32:04Non-Medical Remedies For Managing Cancer Pain