CLL Patient Cafe® – March 2019
Managing Side Effects and Symptoms
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.
Transcript:
Andrew:
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.
Esther:
No problem.
Andrew:
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?
Adrian:
Well, next month or so it’ll be two years, actually.
Andrew:
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.
Adrian:
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.
Andrew:
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.
Adrian:
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.
Andrew:
Okay, well we’ll talk more about your journey. Let’s go over to New York. There’s Jay Blatt.
Jay:
Hi, everyone.
Andrew:
And Jay, you were diagnosed when?
Jay:
January of 2016.
Andrew:
Okay, and what led to that diagnosis?
Jay:
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.
Andrew:
Okay, and you’ve had no formal treatment, but you’ve been on a special diet that you believe has helped you.
Jay:
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.
Andrew:
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?
Maggie:
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.
Andrew:
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?
Maggie:
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.
Andrew:
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.
Maggie:
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.
Andrew:
I understand. Now Adrian, you had not just issues with being told you had cancer, but you had hospitalizations that came with this, too.
Adrian:
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.
Andrew:
Right, and you’ve had a number of hospitalizations, but you’re doing well now.
Adrian:
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.
Andrew:
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?
Jay:
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.
Andrew:
Okay, so I wanna give credit to Esther Schorr, my wife of how many years now, Esther? 30?
Esther:
It’s going on 34.
Andrew:
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.
Esther:
As organic as possible.
Andrew:
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?
Esther:
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.
Andrew:
Maggie, do you draw on the family? You ended up telling them all. Do you draw on them for support?
Maggie:
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.
Esther:
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.
Andrew:
So true. Now, Adrian, you have five kids, right?
Adrian:
Yes, that’s right. The youngest is 12 and the oldest is 22, so that’s quite a range.
Andrew:
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 –
Adrian:
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.
Andrew:
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.
Jay:
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.
Andrew:
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?
Maggie:
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.
Andrew:
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?
Adrian:
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.
Andrew:
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.
Jay:
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.
Andrew:
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?
Maggie:
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 –
Andrew:
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.
Maggie:
Exactly, and if these get too bad, I’ll say I’m ready.
Andrew:
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.”
Esther:
A netty pot.
Andrew:
A netty pot, or there’s some other ways. You can get a little squeeze ball.
Adrian:
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.
Andrew:
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?
Adrian:
Yeah, that’s right, and throat infections, yes.
Andrew:
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?
Esther:
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.
Jay:
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.
Maggie:
That was my point, exactly. Thank you, Jay.
Andrew:
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?
Adrian:
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.
Andrew:
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?
Maggie:
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.
Andrew:
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.
Esther:
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.
Andrew:
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?
Maggie:
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.
Andrew:
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.
Jay:
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.
Andrew:
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.
Jay:
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?
Andrew:
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 –
Adrian:
But hopefully, not a latte, Andre. No lattes, yeah? No lattes.
Esther:
We get them with soy. We get it with soy milk.
Adrian:
It’s the sugar. You don’t want the sugar in the latte syrup, you know?
Esther:
Right, right.
Andrew:
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?
Adrian:
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.
Esther:
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.
Jay:
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.
Andrew:
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?
Maggie:
Right, in about 15 minutes, I’m leaving for the tee box, so it’ll be fun.
Andrew:
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 –
Adrian:
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.
Andrew:
All right. And so, may you go on and get your walking. You’re gonna be jogging with me and jay before long, okay?
Adrian:
I’ll do my best.
Jay Blatt:
You’re gonna be carrying us, he means.
Adrian:
I don’t know about that.
Andrew:
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.
Jay:
Thank you, Andrew and Esther and everybody else.
Maggie:
Thank you guys.
Adrian:
Thank you guys.
Andrew:
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.
