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
CLL patient and host, Carol Preston, leads a panel of 5 other CLL patients from around the country to discuss treatment options and living well with their disease.
Hello everyone, and welcome back to my favorite coffee shop, the Patient Cafe. This is our virtual coffee clatch to share information, not just from me but from many other patients who have been living with CLL, chronic lymphocytic leukemia, and they’re going to help their insights to support and to guide us for treatment options and living life well.
Again, I’m Carol Preston. I’ve been a CLL patient for 12 years, one relapse, in remission now since 2010, but, unexpectedly, I developed a second cancer, and I’m not alone in this because some of our coffee clatchers will share their experiences with second cancers as well, was diagnosed in December, a soft tissue sarcoma.
I have a quick update, very positive. My first set of post‑surgical and post‑radiation scans since I did the interview with Andrew Schorr‑‑by the way, it’s on the CLL website, Blindsided By a Second Cancer‑‑those scans were clean. Having said that I have seven more sets of scans to go over the next year and nine months, but fingers crossed that they will be clean as well.
I also want to share a wonderful piece of news since I did that interview, I became a grandmother for the first time. And I know on this panel I am not alone in joining that very, very happy club, but I get very excited about this little baby boy, so I wanted to share that good news with you. And really it just speaks to the importance of keeping one’s eyes on the prize. Because as I was going through a treatment for this second cancer I kept that little baby and its imminent birth in my head the entire time. So lots of good news on my end as well as from the panel from our coffee clatchers that you are about to meet.
Before I turn it over to them and introduce them I want to be sure that we thank the Patient Empowerment Network for its support. The program is produced by Patient Power. This program is not a substitute for medical help and guidance that you receive from your healthcare providers. This is really general information, that as I said at the beginning we hope and are confident will guide you to more informed treatment centers‑‑decisions, and become more empowered. And, in fact, that is what we are calling today’s coffee clatch, Becoming a More Empowered Patient.
We have a robust panel of people joining us around the table with their virtual coffee cups, Sue, Sherry, Catherine, Neal, and Dave, and I’m going to let each of them quickly introduce themselves, where they’re from, how long they’ve been living with CLL. And then from there we will carry on our conversation.
And, Sue, if we might start with you, then go to Sherry, Catherine, Neal and Dave.
Absolutely. Good morning, everyone. My name is Sue Dudek. I live in Palm Desert, California. It’s going to be 118 today. Yeah. And, anyway, I was diagnosed with CLL. It’s been five and a half years. It was in January of 2013, diagnosed in a routine blood test. It became very aggressive. I went into treatment the following June, and I am now in remission, which is wonderful. Feeling great, and continue to do well, other than the fatigue.
Don’t know what else you want to know at this particular point. I would have to say that I was pleased to have found Dr. Kipps at UC San Diego, who is my physician, and I am 17p deleted, so that meant that I had to have some rather unique and different treatment approximate plans, but so far, so good.
And, Sue, I’m also 17p deleted, and to echo you, so far, so good. All right.
Well, let’s talk to Sherry. Good morning.
Good morning. I’m Sherry Gardener. I live in Fort Collins, Colorado. And I have known that I had CLL since 1999. I’ve probably actually had it since 1996. I’m fortunate to have one of the lower risk varieties. I have a 13q deletion, but I’ve had treatments off and on over the last how many years, 18 years or so. I’ve been in remission now for a little over two years. My last treatment was with idelalisib, and Rituxan.
I’m very fortunate that my hematologist is Dr. Clive Zent at the University of Rochester in New York, so I travel there three, four, sometimes more times a year because he’s a star and I figure we only have not that many chances to get it right.
Well said. Catherine?
My name is Cathy Shneck, and I live in the small town of Pine Grove, Pennsylvania. I was diagnosed in July of 1997, so next month will be 21 years for me. Probably what’s a little unique about me is I’m a registered nurse, so I went from being the caregiver to the patient, which is an adjustment for me. I have‑‑I’m on my fourth agent currently. I had FCR, and then I was tried on ibrutinib, which I failed because of bleeding issues. And then I did obinutuzumab, which had no effect.
So I’m currently in a Phase 1 clinical trial at Penn in Philadelphia, an oral agent, the next Btk inhibitor, and so far it’s been working. I am not in remission, but I’m controlled.
That’s good news and persistent. And hopeful news.
Wonderful. All right. And then rounding out our clatch this morning, Neal, and then Dave.
Good morning. My name is Neal Rosen. I live in San Mateo, California, which is on the peninsula south of San Francisco. And I was diagnosed just about three years ago, I think in about a week or so, so happy anniversary to me. I had a pretty quick onset of the disease, and so I started chemo within about a month of diagnosis, went through five or six rounds of FCR, and at this point am in remission.
That’s great news, and we’re going to hear more about your empowerment moments right after we hear from Dave and say hello to him.
Hello. I’m Dave Weisler from Metamora, Michigan. I’m been‑‑I’m 11q. I’ve been in two clinical trials. The first one was with lenalidomide out in Buffalo, New York, and the second one was at Ohio State, and it was for three treatments. It had obinutuzumab, Revlimid‑‑excuse me, ibrutinib and then finally venetoclax, and I’m MRD negative.
Fantastic news. That’s the news that we’d like to hear. All right. Well, you’ve met our wonderful panel sitting around our virtual coffee table today, so now let’s get the conversation going. First of all, what I’ve picked up from these introductions, a couple of things. Number of you have been on several treatments, and the other thing that I picked up in terms of being empowered patients is that you wasted little or no time getting to major medical centers and not relying necessarily, necessarily on the first oncologist with whom you met.
That was my situation back in 2006. And, you know, I can say I probably wasted a little bit of time because I wasn’t a very knowledgeable or empowered patient, and sometimes we learn by trial and error. So what I’d like to do is to go around, and you can all pick up from each other. And, Dave, we’ll start with you this time about basically an ah‑ha moment to become empowered. You haven’t been suffering‑‑well, when were you first diagnosed? Tell me again.
Eleven years ago.
Yeah, 11 years ago, so you’ve been on a few regimens. So tell us about how you became more knowledgeable and empowered.
Well, if I had listened to my local oncologist I’d died about four years ago, and so back then he said all we have is a cocktail for you, they called it. And so I started looking into it, and I said, no, there’s got to be something better out there. And I found a website called CLL Forum, and I it had a lot of the people that were in the same boat I am looking for the new treatments.
And that’s where I found the one out in Buffalo, New York, and that lasted about three and a half years. And then, still reading, I found the one at Ohio State, which was the three‑drug treatment that I really, like I said, I was‑‑in seven months I was MRD negative, and at 14 months I was still MRD negative in the blood and the bone marrow. And I haven’t been on treatment for a year and a half.
That’s such fantastic news, and as you now know Ohio State is one of the premier medical centers for treatment for CLL.
So your research got you to the right place in the Midwest. Neal, since becoming an empowered patient, I know you’ve only been living with this, long enough certainly, but for three years.
Well, I was fortunate, if that’s the right word, to have a very good friend here who had been diagnosed about a year and a half or so before I was, and although he has not yet undergone treatments, he did a lot of due diligence. And so he was able to turn me on to sources of information including Patient Power.
And, you know, I have to say that before I was diagnosed I probably couldn’t have told you‑‑given you ten words about leukemia. I just didn’t really know much about it other than it was a blood cancer. And I think, you know, I was referred to my oncologist by my primary care physician, who I trust a great deal, and I did get a second opinion at Stanford. My primary care physician is with California Pacific Medical Center in San Francisco.
And, you know, I read as much as I can and keep on top of things as best I can, and I think, you know, you really have to as a patient you have to do that.
And, Cathy, did you have a similar experience are or‑‑you’ve had quite a road. You’ve had quite a path over these last 21 years.
Yes, it’s been a long time. Well, my diagnosis was by accident, or I shouldn’t say accident but I went in for a GYN procedure. They found it on my pre‑op blood work. And then I was referred to a local oncologist that I had a really bad experience with, which I won’t go into. I’m actually on my fifth oncologist now.
I was going to Penn State Hershey. In fact, I still go there. That’s my local oncologist, and he got to the point where he didn’t know what to do with me anymore. He was out of options, so he‑‑we have a very collaborative relationship because we were both medical professionals so he talks to me very respectfully and includes me in all my decisions, and he told me to do some research, look for a CLL specialist, which I did. I narrowed it down to two and then took those recommendations back to him and one of the ones that I had chosen was one that he wanted to recommend, so that’s how I ended up at Penn.
And Penn, you may know, is doing leading research on this CAR‑T cell therapy, which doesn’t involve meds at all‑‑
‑‑but reigniting our immune systems in certain ways. Still in experimental stages. So, obviously also plugging and plodding ahead to get the right treatment from the right center or facility.
And Sherry, how about you?
Well, I used to be an RN as well, Cathy, and I speak the language, and I think that that gave me a head start in becoming what we are calling a powerful patient. You know, you can recognize quality when you’ve been a nurse, and you can also recognize the opposite, and I had a few false starts.
And, finally, some of you will remember Chaya Venkat, who was so helpful to many of us in the early days of CLL with her online forum. She suggested, she met Dr. Zent up at the Mayo Clinic, and she said, you know, I think he’d be a really good fit for you. And so I started seeing Clive at the Mayo, and saw him there for 10 years. And now have been‑‑he moved over to the University of Rochester to be the director of the CLL treatment and research program there, so now I go to Rochester to see him.
From Denver. From Denver, right?
I fly from Denver, yeah. I’m spending all our children’s inheritance.
That’s all right. My supervisory doc was at MD Anderson. I live in Maryland, half way across the country, so I feel your inheritance pain there.
Our kids will have a few things left like maybe some dishes, I don’t know.
They would rather have you than any inheritance. Anyway, keep going. Sorry about that.
I’d rather have them too.
I can’t emphasize enough the importance of education, self-education. What I have found very helpful in learning about CLL are some of the Patient Power forums with the experts, the interviews with the experts. In fact, one of those led me to a physician in Denver who I will see locally if I need to for emergencies if I can’t get out to Rochester. Dr. John Burke, and he’s terrific too. So education is really important.
I think it’s also important to be aware of the sources of our education. There are some folks on some of the online forums who like to play doctor, and I think it’s‑‑it can be fairly easy to tell what’s good information and what you might just pass over.
I’ve also found exercise to be really important. I was diagnosed serendipitously the day before I was scheduled to do a triathlon in 1999, so I was in really good shape. But I had this little pain, you know, in my sternum the day before, and I thought, oh, I don’t really want to have a heart attack during this triathlon. That would be so embarrassing. And so I went to the emergency room, and it was found on a CBC.
The young cardiologist came into the room after some wait, and she looked about 12, and she said, you have CLL, but don’t worry about it. Oh.
Freak out, right?
Thanks for sharing. So I was in really good shape then, and I found that continuing exercise has been one of the best treatments both for anxiety and also for keeping this body in pretty good shape.
Yeah, I have to second that as far as‑‑and also getting‑‑mentally getting the endorphins flowing, keeping the energy level up. And I have a feeling that that’s not just you and me, Sherry, but some others on the panel as well.
Sue, could you share with us how you got‑‑how you got into this coffee clatch with this morning, this afternoon?
Absolutely. When I was first diagnosed, again I mentioned it was just through routine blood work, and my family physician said, you know, you’re either really, really sick with an infection or you have leukemia. And he said, you look too healthy to be having a really bad infection.
So he referred me to a local oncologist, and they started monitoring me. And during this time I was really quite ill, and it was progressing very, very rapidly, the white blood counts, everything. And this was from February until the first of June, and I went to see the oncologist, and he said we need to start treatment right away. We’re going to put you on FCR.
And I for some reason decided, I said, would you please give me a couple of extra slides of my blood work. And he did. He said, yeah, I’d be happy to. What are you going to do with them? And I said I’m going to send them to a friend of mine who is a CLL research‑‑he’s a blood cancer researcher at the Huntsman Institute in Salt Lake City. And I sent them to him.
He immediately wrote back and said, do not start treatment. Get a second opinion. He said you are‑‑I don’t know if you can get in to see Dr. Kipps, but he’s the best one close to you. So I cancelled my appointment to start treatment. I called down to the UC San Diego in La Jolla. I said they want to start treatment, and they said, send us all of your paperwork. I sent a fax, and within 45 minutes after I sent the fax I got a call, and they said, the doctor wants to see you next week.
Yeah. He wants to see you next week. So off I went. It’s about a two hour lovely drive from Palm Desert to La Jolla, which is even prettier. And so I went down there and am seeing Dr. Kipps. He immediately started my treatment with apheresis. Because my spleen was so enlarged, he was very concerned about tumor lysis syndrome. So my first step was to go back down to the hospital and spend the day having the apheresis where take your blood.
Yeah, would you explain what that is for us?
Well, it’s kind of‑‑they take all your blood out of one arm and put it back in the other, and it’s kind of like a dialysis except they put it into a centrifuge, and that spins out the white blood cells because they’re heavier, I believe heavier than the other blood cells, and they were accumulating in a bag‑‑although they’re not white, they’re pink. I will tell you that right now. And they were accumulating and it took‑‑it was about a six‑hour process, and they‑‑
So, Sue, if I may jump in.
So good news is that you did push for that second opinion‑‑
‑‑including slides to a researcher in Utah who directed you to again another premier center, UCSD. Dr. Kipps is famous, world famous for his research in to CLL. And that’s what I’m hearing from all of you.
One of the questions that I’d like to ask‑‑and anybody can jump in. I don’t want to feel as if we just keep going around the table, is this pushing through beyond the diagnosis. Because I know for example when I heard the word leukemia, you know, for me that was a death sentence, before I knew anything. It was totally out of the blue for me, totally unexpected, and like everyone else scared to death, frightened. And to actually‑‑went to the oncologist referred‑‑to whom I was referred, took that oncologist’s word that this was what I needed to do. Was not an informed patient, was not empowered by any stretch.
And so I’m wondering how all of you, and for those of us watching and listening, would like to know how do you push through that diagnosis? How do you tamp that initial fear and panic to get to the next step, which is to seek another opinion, which is to just take a breath and say, I can wait another week or two or three. I think all of you have something to contribute along those lines, please, just jump in and let’s hear about that.
Well, if I would‑‑I could go. I’m one of those that I immediately got on the internet. I mean, literally from the first time I heard from my doctor I got on the internet. I started researching it. I called my mom, and I said, mom, does anybody in the family have leukemia. She couldn’t recall that, so I figured at that point it was probably not hereditary.
So I just really started digging in. Maybe that’s me. I was a researcher in my background, so I just started reading everything I possibly could about it.
Okay. So that’s one way. Of course, a lot of times people feel intimidated. There’s so much information on the internet, thousands and thousands of pages, so all of you seem to have waded through that.
Neal, what about your experience?
Well, as I said earlier, I had the good fortunate, again if that’s it right word, of having a good friend who had been diagnosed, and so he was able to share some of his insight. I also had a friend who actually was one of the first patients treated with Gleevec for AML, and he’s very close to Dr. Druker, and so he was a good source of information.
And again, you know, I spent a fair amount of time doing the research on my own as well, so I had several different avenues, if you will, of ways to get more educated.
Getting on the internet and doing all of this research has been described sometimes as drinking from a fire hose with many of us feeling we need to absorb information. It’s the equivalent of getting an M.D. in the space of one, two or three weeks.
So, Dave, how did you push past that?
Well, first of all, I didn’t‑‑I had trouble with my oncologist’s diagnosis that I had seven years and that was about it. Three trials of FCR I assume, and I just couldn’t, I couldn’t see myself there. And I’m a school teacher, so we’re used to researching. And I first went on and looked at all the different websites. Obviously, Patient Power was one of them I looked at and did some research. There’s a place also called PubMed. I don’t know if you’re familiar with it.
Okay. It’s all the research being done. So I went there and looked on what was going on, what were the trials, what were the results. I’m a statistician, so I could read the research, you know, and the probability. And that got me going. And then, like I already mentioned, that one place has a clinical trial place where I saw other people.
And I go, no, that clinical trials is where it was at. This was not just go find an oncologist with FCR. Like I said, he gave me seven years and I just couldn’t‑‑that was just not the right place for me. So I did a lot of research and found that the closest one, like I said, was in Buffalo, New York, for Revlimid.
So let me ask Sue first, and then Sherry. When we pause and we take the time to do the research, that to me is the biggest challenge because so many people just want to get the cancer out as fast as they can. And that was my approach. It was not a good approach, obviously, twelve years ago. If I had taken a little more time I might have had one treatment. Of course hindsight is 20/20.
So how do we take that pause? Where do we get the confidence to take that pause before we start jumping into treatment? Sherry?
Well, that’s a really good question, especially for me, it’s hard to answer because I’m‑‑I’m a pretty impatient person, but I’ve also spent a lot of my life in academia. I’m a clinical psychologist, and, like Dave, I am accustomed to doing research. So I too went to pubmed.gov and put in CLL and found the researchers who were doing the gold star work in CLL, and that’s how I chose the subsequent docs that I went to see.
I think we have to dig kind of deep into ourselves and think, am I going to believe what somebody else told me, I have seven years left to live? How would that doctor know you’re going to have seven years? He doesn’t know that. I think we‑‑it’s all about taking responsibility for ourselves and thinking, we’ll see about seven years. We’ll see about 10 years.
But it gets down to who we are inside and the kind of internal strengths I think that we were born with, what our life experiences have been. But we can‑‑if we’re a little timid ourselves we can listen to other people who have done this work and say, well, Dave didn’t want to hear seven years so look at what he did, and I’m going to be Dave for a while, and I’m going to do what he did.
And that’s why this Patient Cafe, this discussion that we’re having is so very important for people to muster up the courage, if you will, to take a breath.
Sherry, you had the advantage of being an RN and a clinical psychologist, but still we play a lot of head games with ourselves and mind games.
So, Sue, what’s your story? How did you gain the confidence to take a step back?
Well, I have to go back to the friend at the Huntsman Institute who‑‑he accepted those slides and said, let me see what I can do. He sent some of them to Oregon. He said, I want to do some digging. This is what I do. And he sent me an e‑mail literally within about three days basically saying do not pass go.
Okay. So let me‑‑and let me, Cathy, we know you’re there. We want to hear how you were able to take a step back and figure it out. And you’re living in a relatively small town. Doesn’t mean you don’t have access to major cities, but Harrisburg isn’t that close to Penn, and you actually started out locally or more locally, did you not?
Right. I was referred to my local oncologist, and, like I said, I had a really bad experience with him. Number one, the day he told me what my diagnosis was he berated me for being upset. That was my start with him. So it all went downhill from there, and I started looking for another physician almost immediately because of some other should I said unprofessional‑type things that happened with him.
But I‑‑I was working in Pottstown at the time, which is about an hour outside of Philadelphia, and I was a nurse manager of a kidney dialysis unit, so I had my colleagues who were the managers of the cancer center, and I picked their brains. They gave me a lot of‑‑back then there wasn’t as much on the internet as there is now. It wasn’t quite what it is today, so I relied more on written materials.
And everything I read said that CLL was a diagnosis or a disease of older men, and I was 38 and a female. So I was like‑‑and everything I read said from diagnosis to death is like 10 to 12 years. And the physician I spoke to at the hospital that I was working at said, you have to realize that if you’re diagnosed when you’re 75 or 80 and they give you 10 to 12 years, you know, that could be just your normal life expectancy. So he said, you’re 38. He said, you can’t go by what that says.
So I took that and ran with it. You know, I said, okay. I’m only 38, so 10 to 12 years is not acceptable to me, so I got as much‑‑
I got as much information as I could. You know, I went through the medical library in the hospital and had the librarian there help me do some research, things like that, and found out as much as I could. And like Sherry said, I wanted to fix it, you know. Okay, you have this problem. Who do we do about it? Let’s fix it.
So watch and wait for me was a totally foreign concept. I want to fix this because that’s just what we do. And I knew nothing about leukemia. It wasn’t my field. I was a kidney specialist nurse, so I had a lot of where I just figured, you have leukemia, they give you a bone marrow transplant and away you go. So I had a lot to learn, and I’ve learned a lot over the last 21 years.
Well, you sure have. First of all, I want to tell you, you look great.
So all of your jagged path to get‑‑
Like Sherry said, exercise is important. I run five miles every morning, so, yeah. I did my first 5K about three years ago, and then right after that I found out I was stage IV and needed to do treatment again, so. I was feeling really great, but my numbers didn’t show that, so.
By the way, I was stage IV when I was diagnosed initially, not the 17p until the relapse. And you know, I said to myself, well, sort of thank goodness. Stage IV in CLL is not the same as stage IV in other types of inaudible tumor‑‑
Or solid tumor cancers for example.
But I’m wondering if‑‑we’ve talked a lot about the relationship that you have with your current healthcare teams, but I suspect that you have had discussions with other people who are newbies to all of this, and maybe you’ve had to calm them down. So how have you handled people coming to you and saying what should I do? Where should I go? How do I handle this? Shouldn’t I‑‑to your point, Cathy, can’t I just get this fixed? Get this cancer out of me as quickly as I can.
What’s been your experience with other people who have actually come to you for guidance?
Well, I have a friend that was just recently diagnosed, like I’d say maybe a year or two ago. And he goes to the physician that I went to initially, and I keep telling him he needs to get out of there, like you need to go somewhere else. But he just doesn’t want to go anywhere but local. It’s more important to him to be in close proximity than to get what I consider quality care.
Now, he’s not to the point where he needs treatment yet, but I’ve been trying to work with his wife to try to convince him. I think she just about has him convinced to at least‑‑to go down to Penn and get a second opinion.
And before I hear from others, it’s something that we want to emphasize for folks watching this. You can be treated locally. A good oncologist not only will work with but should encourage all of us to seek second opinions from the experts in the field, major medical centers, because these are the men and women who are on the cutting edge. And the treatment options from those major medical centers could be a year or two in advance of what the community oncologist or the local oncologist is prescribing. Some of you have experienced that firsthand.
So, again, we want to emphasize, at the very least, be comfortable working locally but get that second opinion from a topnotch expert in the field, and increasingly they are spread around the country. If you go to the CLL forum on ACOR, for example, A‑C‑O‑R, at the end of every discussion they have a list of CLL specialists. So there are lots of places to find CLL specialists at least to get that second opinion.
And then coordinate having that specialist work with your community oncologist. We don’t want to discourage people from working locally. We need or community oncologists. The good ones will coordinate, work with the experts at the major medical centers.
Who else can tell us about an experience with somebody who came to them in the not‑know?
My sister‑in‑law was diagnosed with MPN, myeloproliferative neoplasm. I’ve learned how to say that. And she lives in the Phoenix area, and she did not want to go get a second opinion. She was under‑‑and I think a lot of people believe that you can’t, your insurance won’t pay for a second opinion. And I think that’s one of the other myths that we can dispel is that, yes, you can, I think with just about everyone, get a second opinion.
And, by the way, being in the Phoenix area, my goodness, you have a couple of great institutions there.
MD Anderson, naming one of them.
Yes, and there’s a Mayo‑‑there’s also a Mayo there.
There’s a Mayo, so.
Her insurance did not allow her to go to Mayo. But, anyway, I did finally convince her because she was not getting better, and her numbers were getting worse and worse and was not feeling well, and I just said please, please, go. And I called my doctor at UCSD, and I said who would you recommend anywhere in the southwest United States for somebody who has MPN, and he recommended, actually, a doctor there at UCSD.
All right. Good.
And she is now in a clinical trial.
Excellent. Excellent. And hopefully‑‑
She’s doing well.
Doing well, that’s wonderful.
Neal or Dave, I’d like to hear from you as to whether anyone has come to you and you were able to encourage, entice, hammer them with information to get a second opinion, to become more empowered.
Yes. I was one of nine people trying to see if the three drugs would work and that there wouldn’t be toxicity on there, and obviously it did well for me. And then there was another second arm of 50 people, 25 that had never been treated and 25 had been relapsed.
And this CLL forum that I belonged to, I was‑‑I blogged everything that I did day by day by day. And I also gave out my phone number in what we call a personal message, and so I was getting a number of phone calls from people about the trial. And I would say out of the 50 people I’d say 25 I probably directly brought into it.
So, but I‑‑just real quickly. I had two gentlemen that helped me, gave out their phone number, and I would call them with just concerns or just being scared. And this was at the early stages of CLL, and they helped me. So, as I tell other people that I talk to, I say, just pay it forward to other people and help them.
What great advice that is. It’s so very important.
And I do want to make a plug for clinical trials. There’s a lot of misinformation, and for those of you in the medical field or medical research you know that it’s‑‑it’s tougher rather than easier to get people to join or sign up for clinical trials. But when it comes to cancer clinical trials it’s not a placebo against the drug that’s being tested. It’s the gold standard of care against the new treatment, so nobody should feel they go into a clinical trial and they’re not getting treatment. You have to qualify of course.
Clinicaltrials.gov, reaching out whether it’s ACOR, Patient Empowerment Network, all of the organizations that people are finding online, lots of ways to get involved with clinical trials. So I did want to make a plug for that.
Neal, how about you? Anything? People coming you, asking for help?
Well, a couple things. So, as I had mentioned, I had a friend here who was diagnosed, but he’s been in watch and wait, and so I leapfrogged him, if you will, in terms of having to undergo treatment, so I’ve been able to share some of those experiences with him.
And also for about the past year or so I’ve been volunteering with LLS, and one of the things I do is reach out to people who have contacted the organization to talk with them about services and assistance. And certainly as part of those conversations you get involved in some of the personal experiences that‑‑personal experience piece that comes with that.
So much of this can really be a grassroots effort, each of us reaching out to a person or two. Sounds like all of us have had the opportunity to talk with somebody else on this unexpected and truthfully unwanted path of cancer, whether it’s a first cancer, whether it’s a second cancer. And hopefully we’ll all be able to do this.
As we wind down our time together in this wonderful coffee clatch, I’d like to go around and ask each of you to a tip. People tend to remember the first thing they hear and the last thing they hear, so perhaps a tip for somebody else. We can use this term becoming more empowered, but many people struggle to find a voice. They’re concerned about delaying.
So let’s start with, Neal, we just heard from you the last, let’s start with you first. If you had one tip to pass along to other patients what, would you say?
I would‑‑and other people have touched on this. I would say don’t let the fatigue get you down and try to stay active as you can. Obviously, listen to your body and don’t push, but don’t let it turn you into an inactive person as well.
That’s a great tip. And, Dave, how about you?
Just that people with CLL, it’s not the death sentence it used to be. There’s too many great drugs out there coming along, and I consider CLL just like diabetes. It’s something I do, I take. I put it in the back of my mind and go on. It‑‑the more you read the more knowledge is power, you’ll find that. It’s not the death sentence it used to be.
And we have to remember the first word is chronic.
And the goal is to live with it and die from something else.
Old age, the infirmities of old age, in our 80s, 90s, our 100s. I have a dear friend of my mother who lived life to the fullest till 108, so that’s my goal. I’m shooting for that.
Sherry, how about you? What’s a tip that you can pass along?
Well, I plan for 107 myself, Carol.
Yea, okay. You don’t want to live too long there.
You know, I think about the infrastructure structure of ourselves. If we can strengthen who we are as people then we will do better with CLL. And by that I mean eat well, exercise, hang out with good people in your life. Take bolt cutters to any relationships that aren’t good for you. Pay attention to the spiritual component of your life, however that may manifest itself. And have fun. If we do these kinds of things, then the infrastructure will be strong and we can cope with all the vagaries of CLL better.
Well, we’re wishing for you, obviously, many more triathlons. And I love that term bolt cutters to people who are not positive.
I just want to add we can’t expect people to understand exactly what we’re going through, but hopefully the people we do hang out with can say things like, listen, I can’t imagine what you’re going through but I can drive you. I can fix a meal for you. I can take a walk with you. I can go to the gym with you. We can go to a movie together. Boy, those are all the things that have helped me in my life and I suspect all of yours as well.
So let’s round this out with Sue and Cathy with your tips for the day. Sue?
Well, I’d have to say two things. One is you must be your own advocate. Absolutely. And probably the other thing is get a second opinion.
That’s what I tell everybody.
Okay. Cathy, you get the last word here.
It’s like Dave said, knowledge is power so you need to be educated. And the other thing I would say is if it doesn’t sound right, if it doesn’t feel right, don’t be afraid to question it. Nobody has all the answers, and just because they have an M.D. or a D.O. behind their name doesn’t make them all powerful, so don’t be afraid to ask questions and to get the answers that you need.
That is a fantastic last tip from our Patient Cafe, nobody has all the answers. And please, please, please according to, definitely what Sue said is at least get a second opinion because a good oncologist locally will work with a major medical center to make sure it’s the right treatment at the right time before you‑‑or no treatment. It may be watch and wait or worry and wait, but best not to get treatment until you absolutely need it.
I love Sherry’s counsel of having fun and take those bolt cutters to people who are not positive in your life and can’t walk along this path with you.
I want to thank, give my thanks to all of you. Dave, Neal, Cathy, Sherry, Sue, what a wonderful coffee clatch we have enjoyed here today. And in particular I would like to again thank the Patient Empowerment Network for sponsoring this and supporting the Patient Cafe. I know we’ll get lots of good feedback and responses from the good counsel of all of you empowered patients. Again, may name is Carol Preston. Please, everyone, be well.
https://powerfulpatients.org/pen/wp-content/uploads/PATIENT-CAFE-®-CLL.png600600Kara Rayburnhttps://www.powerfulpatients.org/pen/wp-content/uploads/New-Logo-300x126.pngKara Rayburn2018-07-25 16:01:132019-09-02 12:27:32Patient Cafe® CLL – June 2018
Certified Yoga Therapist Raquel Jex Forsgren shares a short yoga and breathing technique to help you reduce anxiety and increase relaxation. You can refer back to these practices in stressful situations to help control your mind and breath.
You can check out more of Raquel’s videos on her YouTube channel, Yoga With Raquel.
So what I’ll ask all of you to do, even those of you that are on‑‑joining us with Andrew‑‑and Dr. Subbiah, you can do it as well‑‑I’d like all of you to feel really comfortable, just to sit in your chair or if you’re watching this in your bed lying on your back, just wherever you are I want you to just simply close your eyes if you feel comfortable doing that. And immediately feel the surface of whatever it is that’s supporting you, the chair, the bed, see if you can sink into it, even 5 percent more than you were initially.
Wherever your hands are, feel the bottoms of your hands, maybe the bottoms of your feet, your toes, your heels. Just feel the body itself. Now notice your breathing and don’t judge it, just notice what it’s doing, if it’s nice and slow and fluid as you inhale and exhale or shorter little breaths or sticky or clunky in any way. Don’t analyze it. Don’t go into any thinking other than just noticing.
Begin to expand your muscles in your ribs as you take your next inhale. Just think about expanding your ribs out just a little bit more, taking two more nice, slow inhales and exhales. And I want you to bring to mind one thing you’re really grateful for today. One thing. The next before we move on, bring to mind a goal, an intention. It could be how you want to feel for the rest of the day, emotionally or physically. How do you want to feel or what do you need? Beautiful.
Softly begin to open your eyes and bring your hands right in front of your heart with your palms placed together. We’re going to do just a few movements of our arms so that you can see what it’s like to connect movement, your body and mind and breath together, and also thinking about lung cancer just something that helps expand the lungs and just activate all of those muscles themselves that need to be nourished.
So as you inhale just open your arms like an (? cast) or goal post. And you’ll need to adjust this. If you have had surgery along the central plate, take it nice and easy, just open, inhaling. As you exhale bring your arms together, touching your palms together, elbows and forearms. Inhale, open the arms again. Exhale, closing the arms together. Just take two more only moving with your own breath. And closing. One more time just like that, beautifully opening and relaxing. And releasing the palms back down on your hands.
Close your eyes one more time. I want you to notice if anything has changed within your body, your mind or your emotions, and there’s nothing wrong if nothing’s shifted. I just want you to notice. And softly blink open your eyes again because I want to show you and have you go through with me one of the best anxiety reducing breathing techniques that can be done. It’s published in the literature.
It’s called alternate nostril breathing. You can do this while you’re waiting at the doctor’s office for results, if you starting to feel panicky or anxious, when you’re inside an MRI machine or a CT scan, when you are just waking up in the middle of the night with racing thoughts and you can’t seem to shut them off. So you’ll take two fingers, sometimes it’s the outer fingers but sometimes with arthritis in older hands it’s a little tougher, so I like to use two fingers, you’re going to bring them up to your nose, and you’ll be closing off one nostril at a time. And I want you to breathe normally and naturally, okay. So this isn’t anything forced.
Close off the right nostril first, and just delicately push it. You don’t have to push it clear into your nose. Just delicately push it. Exhale all the way out the left side of the nostril. Then inhale through the left nostril, exhale out the right nostril. Inhale through the right nostril, exhale out the right nostril. We’re going to do three more of these. Inhale through the left, exhale out the right. Inhale through the right and exhale a little longer out the left. One last time. Inhale through the left and exhale longer out the right side.
Bring your hands back down to your lap and close your eyes again. Take a nice normal, natural breath. And I want you to notice what’s different in your breathing, if anything. Just notice it. Notice your heart beating. Come back to that intention or that goal you set for yourself. And softly blink open your eyes with a smile. I’m expecting all of you watching to be smiling even though I can’t see you. And Namaste.
https://powerfulpatients.org/pen/wp-content/uploads/yoga.png600600Kara Rayburnhttps://www.powerfulpatients.org/pen/wp-content/uploads/New-Logo-300x126.pngKara Rayburn2018-07-02 18:10:522020-01-29 10:39:10A Yoga Technique to Increase Relaxation and Reduce Anxiety
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HealthTunes’ wish is to help you conquer obstacles you’re faced with while providing you with music therapy you can truly benefit from.
https://powerfulpatients.org/pen/wp-content/uploads/Untitled-design-19.png600600PEN Editorial Staffhttps://www.powerfulpatients.org/pen/wp-content/uploads/New-Logo-300x126.pngPEN Editorial Staff2018-05-14 15:20:562019-09-02 12:27:30HealthTunes and MusicMedicine
People with cancer can stand to benefit from the many positive effects of indulging in swimming. It is one of the top 10 favorite physical activities according to the 2013 Recreation Survey. Swimming for fitness also grew in popularity, jumping to 2nd place behind walking according to PHIT America. It not only keeps you in a good shape but also offers many advantages empowering patients with cancer. From acquiring survival skills to enjoying the soothing effects of the water, swimming is a form of physical and recreational activity that provides immense advantages to everyone.
Swimming is An Empowering Exercise
There’s probably nothing better than swimming. Often dubbed as the perfect workout, it is a less weight-bearing form of exercise supporting your body in the water. It enhances muscle strength, improves endurance and keeps you in a good shape. In addition, research studies show that swimming has positive effects on the mental health. It improves moods, relaxes and calms the body.
For patients affected by cancer, swimming is a physical activity that offers benefits during and after treatment. Studies also show that even those with advanced stage cancer can take advantage of the gains offered by the activity. It helps combat the side effects of the disease by decreasing the intensity of symptoms such as pain, fatigue, and peripheral neuropathy. Through physical activity, people with cancer can relax relieving stress and reducing depression caused by the illness. Quality of life is, therefore, improved through physical activity such as swimming.
A Skill with A Lifetime Value
Swimming not only provides physical and mental advantages to cancer patients, it is also a skill that you can use throughout your lifetime. It equips you with the ability to judge situations in the water, find the best solutions and cope with challenges. Although over half of Americans or 56% know how to swim according to the Red Cross Society, the ability to swim is not merely judged by being able to tread or putting your head above the water. It is also the skill to find a way out of dangerous situations and preserve your life. Swimming teaches you how to stay safe in the water. Moreover, the physical activity enables you to know how to rescue others who are in trouble safely. It also trains you how to overcome any fear that you may have such as being in or near to water and even drowning.
For patients who are going through the cancer disease, swimming is a great form of exercise that offers physical and mental benefits. It helps in decreasing the uncomfortable symptoms of cancer and assists in improving overall wellbeing. Above all, it is a life skill that can save your life and that of others.
https://powerfulpatients.org/pen/wp-content/uploads/taking-the-plunge_.png600600PEN Editorial Staffhttps://www.powerfulpatients.org/pen/wp-content/uploads/New-Logo-300x126.pngPEN Editorial Staff2018-05-02 17:17:042019-09-02 12:32:01Take the Plunge: How Swimming is Empowering Cancer Patients
We all know what it’s like to feel tired – physically, mentally and emotionally, but usually after some relaxation and a good night’s sleep, we are ready to take on the world again. When you have cancer, though, rest often isn’t enough. Fatigue caused by cancer and its treatments takes a toll on your stamina along with the emotional effects of cancer. Being diagnosed with cancer is highly stressful and we know that stress affects your state of mind, your sleep, and your energy levels too. Even after adequate sleep or rest, you still feel tired and unable to do the normal, everyday activities you did before with ease. You experience a persistent, whole-body exhaustion. You may find it hard to concentrate or to engage in your usual activities.
What is cancer-related fatigue?
Cancer-related fatigue (CRF) is increasingly recognised as one of the most common and distressing side effects of cancer and its treatments. It has a negative impact on work, social relationships, mood, and daily activities and causes significant impairment in overall quality of life. It has been estimated that from one quarter to nearly all cancer patients experience fatigue during and after treatment. Although CRF generally improves after therapy is completed, some level of fatigue may persist for months or even years following treatment. Studies of long-term breast cancer survivors suggest that approximately one-quarter to one-third experience persistent fatigue for up to 10 years after cancer diagnosis.
A constant feeling of tiredness that doesn’t ever go away or get better
Being more tired than usual before, during, or after activities
Feeling too tired to perform normal routine tasks
Feeling general weakness or lethargy
Being tired even after a good night’s sleep
Inability to concentrate or focus
Inability to remember
Being sad, irritable or depressed
Easily frustrated or angered
Difficulty moving arms or legs
What medical help is available for cancer-related fatigue?
A lot of cancer patients do not report fatigue to their doctors because they think that nothing can be done for it. In fact, there are things that can be done to alleviate the debilitating effects of CRF. If left untreated, fatigue may lead to depression and profoundly diminish your quality of life, so it’s important that you speak to your doctor if fatigue is an issue for you.
Before you can address CRF specifically, your doctor needs to determine if there are any underlying medical issues which may be contributing to your fatigue. For example, if you are anaemic, you may need to take nutritional supplements like iron. Sometimes fatigue is confused with depression. It’s important, therefore, to be evaluated to distinguish between the two. You may experience one or the other, or both at once. But they are not the same. You may need treatment for depression before you can adequately deal with your fatigue.
6 Everyday Strategies To Cope With CRF
Making some adjustments to your everyday routines can also help you cope with CRF. Here are 6 ways to do this.
1. Make deposits in your ‘energy bank’
Don’t expect to be able to do what you could do before cancer. Know your limits and don’t expect too much of yourself. You may find it helpful to think of your energy reserves as your ‘energy bank’. Whenever you do an activity you make a withdrawal. And when you rest you make a deposit. It’s important to balance withdrawals with deposits. If you keep doing too much whenever you feel like you have energy, you’ll run out completely and not have any reserves left for the things that are important.
2. Plan your day
Planning is key when you have fatigue. Write a ‘To Do’ list each evening so you can prioritize the things you need to do the next day. By prioritizing in this way, you can use your energy on the activities most important to you. Spread your activities throughout the day during times when you feel best and take rest breaks in between activities.
3. Keep a fatigue diary
Keeping a fatigue diary – where you score your fatigue each day on a scale from 1 to 10, and record your activities – can help you think about patterns in your energy levels throughout the day. This can make it easier to plan your activities for the times when you have more energy.
4. Do some regular light exercise
Although exercising may be the last thing you feel like doing, if you don’t exercise, you’re more likely to experience fatigue. In fact, a new study found that exercise and psychological interventions may be powerful tools in combatting cancer-related fatigue. Research has shown that there are many benefits to exercise. Not only does it help reduce the symptoms of fatigue, exercise encourages your body to release endorphins – often called ‘feel good hormones’. When released, endorphins can lift your mood and sense of well-being.
5. Eat healthily
When we are exhausted, we tend to gravitate towards processed, junk food which depletes our energy reserves further. Follow a well-balanced diet (high in protein and carbohydrates, low in sugar) and drink plenty of fluids to avoid dehydration.
6. Adjust your work schedule
Talk to your employer about making adjustments to your work schedule. Discuss the possibility of flexible working hours, reduced working hours or working from home. Ask colleagues to help you with some of your work. Talk to your occupational health adviser if you have one. They have a duty to support you doing your job and help you with any health problems that may affect your work.
Though fatigue is a common symptom when you have cancer, there are steps you can take to reduce or cope with it. There’s no one way to diagnose or treat cancer-related fatigue. Try some or all of these coping tips until you find what works for you.
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.
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There are two schools of thinking about cancer. School one says that cancer is a hereditary disease, passed from generation to generation. A good example of this are women who possess the BRCA1andBRCA2 gene mutation. Women with this mutation have a 70% lifetime risk of developing breast and/or ovarian cancer. Angelina Jolie, for example, lost her mother and aunt to cancer and was subsequently found to have the same mutation.
The second school says that cancer can occur due to lifestyle choices. A good example of this is cigarette smoking. It is the number cause of lung cancer, linked to 80 – 90% of lung cancer cases.
Recently, researchers at the Boston University School of Medicine have introduced another theory about the development of cancer. They proposed that there are processes within our cells that activate certain sequences of DNA. Those processes act as on/off switches for the development of cancer.
This idea is based on the evolving science of epigenetics. Epigenetics looks at the way genes express or don’t express themselves as we age. Those gene changes are thought to be influenced directly as a result of our nutrition and behavior, as well as exposure to toxins in our environment. In a sense, it’s a hybrid of hereditary disease and lifestyle choices.
Epigenetics is a normal process in our bodies. For example, all of our DNA is the same, yet cells develop into liver cells, brain cells, muscle cells, etc. because of the way epigenetics turns on and off different cell processes. But our lifestyle choices can impact the way genes express themselves as well.
Perhaps you’ve heard the expression “Sitting is the new smoking.” The reason for this is due to research on lifestyle and cancer. The results of dozens of surveys found that a sedentary lifestyle increases the risks of cancer, specifically colon cancer. Subjects who spent most of their day sitting were 24% more likely to get colon cancer. People who watched the most television had a 54% greater risk than those who watched fewer hours. Uterine cancer was also affected by sitting; women who were the most inactive experienced a 32% great risk. The female T.V. watchers fared worse; those who watched the most television has a 66% risk of developing uterine cancer.
In all these cases, it’s not the inactivity per se that causes cancer to develop. It’s the processes of epigenetics that are affected by inactivity that can cause cancer.
It’s a complicated and exciting time. Next month, more on how unhealthy habits are incorporated into our DNA and passed onto our children.
https://powerfulpatients.org/pen/wp-content/uploads/2016/01/Amy-Gray.jpg396354Amy Grayhttps://www.powerfulpatients.org/pen/wp-content/uploads/New-Logo-300x126.pngAmy Gray2017-02-27 15:50:272019-09-02 12:26:16How Your Lifestyle Can Affect Genes That Cause Cancer
The American Institute for Cancer Research (AICR) estimates that approximately one-third of cases of the most common cancers in the U.S. could be prevented, which accounts for about 374,000 cases of cancer per year. Cancer prevention is action taken to lower the chance of getting cancer therefore reducing the burden and deaths from cancer each year. Since February is Cancer Prevention Month, we wanted to highlight some ways to reduce your risk and protect yourself from cancer.
1. Eat a healthy diet & Stay active
Eating a balanced plant-based diet filled with a variety of vegetables, fruits, soy, nuts, whole grains, and beans can help lower your risk for many types of cancer and will help you maintain a healthy weight.
Adults should get et at least 150 minutes of moderate intensity or 75 minutes of vigorous intensity activity each day (or a combination of these), preferably spread throughout the week. While children and teens are recommended to get at least 1 hour of moderate or vigorous intensity activity each day, with at least 2.5 hours of moderate intensity aerobic activity each week.
2. Protect yourself from the sun
Sun exposure at any age can cause skin cancer. Be especially careful in the sun if you burn easily, spend a lot of time outdoors, or have any of the following physical features:
Numerous, irregular, or large moles
Blond, red, or light brown hair
To block UV rays try covering-up, wearing sunscreen, wearing a hat, using UV-absorbent shades, and limiting you exposure time.
3. Get immunized
The human papillomavirus (HPV) vaccine helps prevent most cervical cancers and several other kinds of cancer, and the hepatitis B vaccine can help lower liver cancer risk.
4. Avoid risky behavior
Another effective cancer prevention tactic is to avoid risky behaviors that can lead to infections that, in turn, might increase the risk of cancer. Some behaviors to avoid:
Excessive alcohol consumption
5. Get regular medical care and screenings
Along with regular check-ups with your physician to maintain an open health dialogue, cancer screenings should also be scheduled. These include the following:
Pap smear – Most women ages 21 to 65 should get Pap tests as part of routine health care. Even if you are not currently sexually active, you should still have a Pap test
Colonoscopy – Colon cancer screening should begin at age 50 for most people. If a colonoscopydoesn’t find adenomas or cancer and you don’t have risk factors, the next test should be in ten years.
Mammogram – Women should should get mammograms every year starting at age 40, for as long as a woman is in good health
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The digital sherpa™ Program helps cancer patients and care partners become more tech-savvy in order to be empowered in their health and healthcare decisions. The program is currently carried out in two different versions, either a in-person, hands-on digital sherpa™ Workshop or through the creation of a digital sherpa™ Help Desk at well known cancer centers.
Cancer patients or care partners who express a desire to become more competent in Internet and social media skills will meet with college students who have been specially trained as Internet “sherpas”. The students will offer help to find support and informational resources online and may include the following:
Information about their disease and other health resources
How to get help to become a self-advocate
Where to connect with other patients
How to become more tech-savvy
Please check out the video below that was produced from our pilot program.
In 2018, we carried out this program in partnership with Moffitt Cancer Center and Cancer Support Community, and the infographic below highlights some of the achievements of the Digital Sherpa™ Program.
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To kick off 2017 and new year of patient engagement and empowerment, we are showcasing 17 tips from patients, caregivers, and leaders throughout the industry. A special thanks to our partner, The Conference Forum and their Patients as Partners US program, for helping to obtain a few of these excellent testimonials. Their tips and advice are as follows.
1. Jack Aiello
“Patients and their care partners need to get educated about their disease and become their own best patient advocates. The internet can be a great resource where disease specialists create videos on topics from disease overview to treatments and side effects. And by getting 2nd and 3rd opinions from disease specialists, you put yourself in the best possible position to make good decisions with your doctor.”
2. Randy Broad
“One very important aspect of treatment, especially at the time of diagnosis, is to understand what treatment options your oncology team is recommending and why. Many providers have ‘pathways’ which determine how a specific cancer (and stage) be treated. Be sure to fully understand what’s behind and underneath this directive. Many times it can be determined based upon cost, not best options currently available.”
3. Matthew Zachary
“Patients have the right to survive with dignity and quality and we deserve to be treated age-appropriately. More so, they also have the right to be made aware of the relevant support resources they are entitled to so they can get busy living. This is what it means to face cancer.”
4. Cindy Chmielewski
“Knowledge is power. Educated patients are empowered. Educate yourself. Join a support community either in-person or online; follow the #mmsm hashtag on Twitter; subscribe to disease appropriate YouTube channels, listen to webcasts/podcasts presented by patient advocacy organizations and engage in meaningful discussions with your healthcare team.
Be a partner in your care. “
5. Jennifer Ahlstrom
“Don’t be afraid to speak up. Patients who ask their doctor questions, ask for explanations and treatment rationales get better outcomes. Myeloma is a very complicated disease and there are now an incredible number of treatment options available for patients. If you don’t feel comfortable asking your doctor questions, it’s time to find another doctor, preferably a myeloma specialist who treats hundreds of myeloma patients.”
6. Marie Ennis-O’Connor
“Becoming an empowered patient means taking personal responsibility for your health. You engage with health care providers and systems in ways that are proactive, rather than reactive. You take positive steps in the direction of the care that is right for you.”
7. Scott Riccio
“Remember that YOU get to define value for your own care. Nobody can read your mind, though, so you have to share what you value, how it impacts you, and what tradeoffs you are willing to make to get the outcomes YOU want.”
8. Andrew Schorr
“Ask your doctor questions! How can we be sure my diagnosis is 100% accurate? How much experience do you have treating this illness? Are there other tests that can help me get the most on-target treatment for my case? What are all the approved medicines for my situation? Why would you recommend one over another? What clinical trials could be right for me, whether or not you have them at this clinic/hospital?”
9. Esther Schorr
“As a care partner, it really is a time to be hopeful as the advances in cancer treatment are moving very, very fast. As it is for the patient you love, it is key to stay educated about advances in treatment options that might be right, and be actively involved in discussions about genetic testing and clinical trials. It’s also critical to lean on your personal community…friends, family, counselors…in order to “keep it in the road” and retain realistic optimism. As more and more survivors and care partners reach out to each other and share stories, we all gain insights and perspective – and you will hopefully feel supported along the cancer journey. We are all in it together, and we are here for each other.”
10. Amy Ohm
“Caregivers need self-care to effectively care for a loved one – always make sure to put on your oxygen mask first! It can be incredibly challenging to focus on ones health with the daily demands of care-giving. Make 2017 the year you assess your own health and strive to reduce daily stress. Connecting privately with those who relate and to share experience to learn from others can help. We want you to be health in the New Year!”
11. David Wallace
“It is imperative that you gain a solid understanding of your disease so you can become your own advocate. Connecting with other knowledgeable patients via social media or online forums to learn what has worked or failed to work for them is a good start. Understand the treatment options that are available to you. See an MPN specialist who will work with your local hematologist. If you are not being treated with care and respect, don’t hesitate to seek a 2nd opinion and change doctors until you receive the level of care you deserve.”
12. Carol Preston
“NEVER hesitate to ask questions. In fact, write down your questions in advance, take them with you to your appointment and go through them one by one. Be sure to write down the answers (or get your care partner to take notes) as a short pencil is far better than a long memory. Better yet, record the QA on your smart phone so that you can listen later to the answers as you’ll retain only about 10% of what the doc tells you during your appointment.”
13. T.J. Sharpe
“Patients and caregivers can be better engaged in 2017 by reaching out to their patient community and actively becoming involved in the support of fellow patients through person to person and group interaction. Patients and their caregivers can raise the bar for everyone involved in healthcare so that the expectations of patients as a partner in their care is not just accepted, but standard and demanded by patients.”
14. Marilyn Metcalf
“Set our goals together in the New Year, and then work together on our plans and make them happen.”
15. Durhane Wong-Rieger
“Patients are basically a heterogeneous lot, coming with all types of experiences and talents, as well as desires and needs. Some patients want to have a voice in high-level policy and system decision-making; some want to extend a personal hand of support. The more diverse the channels and opportunities for involvement, the more patients can take active and meaningful roles. Every person naturally wants to feel respected and empowered so it doesn’t take much to engage patients: provide a portal, support, information, acknowledgement and most important action.”
16. Deb Maskens
“Patients and caregivers get information from a wide variety of sources, from personal anecdote to television advertising to medical journals. Empowerment and engagement for patients and caregivers in 2017 needs to start by providing them with more information that is trusted, balanced, and objective. Information is power. Let’s give patients and caregivers the information they need as the first step for them to be empowered and engaged in treatment decisions that are right for them as individuals.”
17. Jeff Folloder
“Resource management. I’m not talking about managing the funds to pay for treatment or care. I’m talking about managing you. I got great advice from a lady in a waiting room at MD Anderson. She told me that every day we wake up with a bucket of energy that we can spend on anything we want and it’s gone at the end of the day. We can spend that energy on quality things and be tired and fulfilled. Or we can spend it on silly things like worry and regret and go to sleep tired and empty. She’s right. And I remember her words every day.”
https://powerfulpatients.org/pen/wp-content/uploads/2016/12/Screen-Shot-2016-12-19-at-1.27.46-PM.png335362Kara Rayburnhttps://www.powerfulpatients.org/pen/wp-content/uploads/New-Logo-300x126.pngKara Rayburn2017-01-09 14:18:552019-09-02 12:26:1217 Tips For Patient Engagement
The Cancer Support Community is an international non-profit organization dedicated to providing support, education and hope to cancer patients. CSC’s website has a wealth of information and resources available, including links to advocacy organizations, online support groups and discussion boards and a Cancer Experience Registry where you can obtain information about your specific cancer and help with research in that area. CSC offers a wonderful service to cancer patients:
Cancer Support Helpline®
Whether you are newly diagnosed with cancer or a long-time cancer survivor or caring for someone with cancer, or a health care professional looking for resources, CSC’s TOLL-FREE Cancer Support Helpline is open Mon-Fri 9 am- 9 pm ET.
You are welcome to call anytime. If you receive a recording, please leave your name and contact number and one of our counselors will call you as soon as possible.
Please call 1-888-793-9355 and a CSC Call Counselor will be happy to assist you with any of the following concerns:
Information about local, regional, or national resources
Finding a Cancer Support Community program near you
General information about the Cancer Support Community and its services (in-person, online and by phone)
Help in talking about some of the emotional and social worries that cancer sometimes brings into our lives
Information about, and assistance in, ordering Frankly Speaking educational materials
Help finding a nearby support group, online support group or discussion group to connect with others
Short-term cancer counseling and emotional support
Open to Options™ treatment decision support counseling
Make a donation to the Cancer Support Community
Access to CancerSupportSource™ online distress screening program
The Cancer Support Community provides this information as a service. Publication of this information is not intended to take the place of medical care or the advice of your doctor. The Cancer Support Community strongly suggests consulting your doctor or other health professional about the information presented.
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