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Relationships and Chronic Lymphocytic Leukemia: Navigating CLL Together

CLL Patient Café®

CLL Patient Cafe® – Relationships and Navigating CLL Together from Patient Empowerment Network on Vimeo.

A panel of Chronic Lymphocytic Leukemia (CLL) patients and their care partners discuss navigating CLL together.

See More From the CLL Patient Cafe®


Transcript:

Andrew:

Hello, and welcome to this Patient Empowerment Network program: Relationships and Chronic Lymphocytic Leukemia, Navigating CLL Together. I’m your host, Andrew Schorr from Patient Power, been living with CLL 23 years; we’re gonna talk about that. And we have some great guests. I wanna thank our financial supporters for this program who have supported this program with educational grants to the Patient Empowerment Network—that’s AbbVie Incorporated and Pharmacyclics—they have no editorial control over what we’re discussing today.

Okay, let’s meet our guests as we talk about relationships. So, first I gotta start with my daughter: Ruthie Clara Schorr, 25 years-old, in Miami Beach, Florida. Ruthie, you’ve grown up with my CLL, right?

 

Ruthie:

Yep, that’s right.

 

Andrew:

And you’re doing okay with it?

 

Ruthie:

Doing okay!

 

Andrew:

We should mention that Ruthie is our chronic lymphocytic leukemia manager for our CLL programs, so she kinda lives with it in her work, and knows her dad has it; we’re gonna talk about that.

Let’s go to Vancouver Island, British Columbia, just north of Victoria to Shawnigan Lake and a famous boarding school there, where Jay and Maureen Connolly join us; Jay is the patient. So, welcome to our program. And Jay, you were diagnosed with CLL in 2011, right?

 

Jay:

2011, that’s right. And treated early with F and R in –

 

Andrew:

F and R—fludarabine and rituximab—but no treatment since then?

 

Jay:

No treatment since then.

 

Andrew:

But some anxiety highs and lows, right?

 

Jay:

Absolutely. Yeah, with reactions to blood tests, or just state of well-being.

 

Andrew:

Right, and Maureen, you’re his partner through all this. Do you worry about him sometimes?

 

Maureen:

I do, and especially on the blood test days. I always feel a great deal of anxiety when he – he never tells me ahead of time; he just will say, “At 7:45, I’m going to get my blood done,” and I – it puts quite a lot of anxiety over that.

 

Andrew:

Right. Right. And you have two grown children, 30 and 34, but everybody knows about it?

 

Maureen:

Yes.

 

Andrew:

Okay. And you’ve been learning about it?

 

Maureen:

Yes.

 

Andrew:

Okay, well, knowledge is power. Okay, let’s go over to Connecticut to a man who’s known in some circles as “Dr. Pickleball,” okay? But that’s Allan Rosenthal; Ridgefield, Connecticut. Why is he Dr. Pickleball? First of all, he’s a Doctor of Podiatry. He’s really into sports. He’s super-active. But yet, last year—Allan Rosenthal in Ridgefield, Connecticut—when you were not feeling well, your energy went pah-choo, right?

 

Allan:

I would be in a regular tennis doubles game playing with the younger guys, and I just couldn’t keep up. It was disheartening.

 

Andrew:

And you went to visit grandkids and family, and normally, you’d be doing all kinds of stuff with them, and you couldn’t keep up with family, right?

 

Allan:

I was in San Francisco trying to take a hike at Lands’ End with my grandson, and I just couldn’t handle the hills, I had to sit down in the park and just wait, I was very disheartened. In fact, I was gonna take the medication beforehand, but being frightened of taking a medication, I delayed it until after the trip.

 

Andrew:

Hmm, and the medication became Ibrutinib—or trade name Imbruvica—how’re you doing?

 

Allan:

I’m doing great! I just came off the pickleball court this morning. My blood counts are back to normal. I have the energy. I can’t wait to see my grandson in September again.

 

Andrew:

Mm-hmm, okay. And your wife is a nurse practitioner, so you’re –

 

Allan:

Yes, she is.

 

Andrew:

– you’re in the health field; she’s in the health field, has that helped you?

 

Allan:

I think it has. It’s helped because we’re pretty connected in the medical community in my local area. And my wife is pretty connected to Yale because she was formerly working at Yale.

 

Andrew:

Okay, so you’ve –

 

Allan:

And the oncologist I see happens to be – was a patient of mine, and it’s been good.

 

Andrew:

Okay. So, everything is – knowledge is power.

 

Allan:

Right.

 

Andrew:

For Jay and Maureen, is knowledge power for you too? I mean, do you try to research things, or do you just talk to your doctor and say, “What is this blood test mean now?” How do you do it, Jay?

 

Jay:

Well, when I was diagnosed, my oncologist did not seem particularly optimistic. I had CD38 marker and Zap-70, and so, people weren’t specific, but I kind of reading-between-the-lines thought that this was kinda gonna be a four or five-year journey. And at first, I was terrified of knowledge, in a way. I looked in the corner of my medical test—the one on which the diagnosis was based—and I saw this ZAP-70, and it said: indicative of a poor prognosis. And so, I wanted to find out more about ZAP-70, but I was terrified of the Internet because I thought I was gonna open some article, and it was gonna say, “You’ll live six years. There’s no chance you’ll have more than six years,” or three years, or what have you. And it was three weeks or a month before I had the courage, I suppose, to begin researching the condition.

And so, I kept hearing things like “we treat the patient, not the numbers,” and this sort of thing. And I kept realizing that I would be hypersensitive to people with the same markers. So, I’d read something by somebody on the list who would say that 15 years ago, they were diagnosed, and they were ZAP-70 and CD38, so that would be reassuring.

 

Andrew:

Yeah, 15 years ago, right.

 

Jay:

Yeah, and then I would also hear from people like Chris O’Dwyer and –

 

Andrew:

Who’s in Canada, mm-hmm.

 

Jay:

– who were so – and Wayne Wells, and people whose understanding of the technical aspects of the – the biology of the disease, were far superior to mine but had an ability to distill a great deal of information into laymen’s terms. And the more information that I read, the more hopeful I became. And I get scared now and again for a variety of reasons, but I also – I hope to take Ibrutinib next.

 

Andrew:

Whatever is right for you, yeah. Whatever’s right for you. Okay, so this program is about relationships, we’re gonna take with Ruthie in just a second. But Maureen, so your husband’s doing this research, was he sharing any of this with you? Because he’s trying to get smart and trying to calm himself down, so did you talk about it?

 

Maureen:

Yes. So, he did share everything with me, and he even shared the videos. And I didn’t totally understand it, but he seemed very confident, and that helped me through. I mean, as the spouse, I think you’re feeling things quite differently. And there are a couple of different kinds of fear that you have that is different than what your spouse has and tend to keep that to myself because you don’t wanna exasperate what he’s going through. So, it’s a little bit tricky.

 

Andrew:

Now, do you, Maureen, talk to your children separately from Jay? Like do they say, “Hey, Mom, what’s really going on?” and you have like a backchannel? Or do everybody speak openly?

 

Maureen:

Yes, I do. And my – what I try to do is just give them some of the information that Jay has given me, and tell them that hope is there, and that’s what we need to continue to do, and that they should not concentrate on his illness but on his good health.

 

Andrew:

Okay. Ruthie’s our middle child; Ruthie is 25, I’ve been living with CLL 23 years. Ruthie’s got an older brother who’s 29, a younger brother who’s 22. So, Ruthie, why don’t you talk about that, do you kids – I mean, I’ve never really asked you directly: do you talk about it? Like, I had a check-up yesterday, and your older brother sent me a text early this morning, “How’d it go?” But do you guys talk?

 

Ruthie:

Yeah, I think what’s been interesting for me is from when you were first diagnosed, I was so young, it’s really kind of a blur, I don’t remember a lot of the details of your diagnosis because I was so young. And then, when you came out of watch-and-wait, and you first went into treatment, it’s pieces that I remember rather than actually facing the condition. So, you were going to Houston and then coming back, and there were days where you were lying in bed, or sick, or at the hospital. And so, I remember pieces of that, but I think it really wasn’t until your relapse when I was in college that –

 

Andrew:

About a year-and-a-half ago, two years ago.

 

Ruthie:

– right, right, that I started to just really have more of an understanding of how tuned-in that I wanted to be to your condition. And I think the biggest thing has been – CLL has always been a part of our life, but you’ve always had this positive outlook of hope. Like Jay and Maureen mentioned, is really you kinda just have to be thankful in the moment that you’re feeling good. And I think like Allan stated before, he kinda saw this change that happened, he started to get back his energy. And I think for me, when you had started to feel not so well again, and then, you relapsed, and you went back into treatment, although I had concern and worry about, I almost just had this hopefulness that it was like: maybe we can get 17 more years of remission, maybe we can get 17 more years of health.

And so, even though it was stressful at the time, and it continues to somewhat be a stress, and Ari and Aton—my brothers—we discuss it sometimes, I really attribute a lot of the hope and the positivity I have towards it, towards the fact we can hold to this that you feel good today, and hopefully you’ll feel good tomorrow. And if the day comes where you don’t feel good, we’ll deal with it, and we’ll deal with it as a family.

 

Andrew:

Hmm, I wanna go back to Dr. Pickleball for a minute, who played pickleball today and he keeps saying that. But Allan, your family, your level of activity is such that in a way, it’s a measure of how you’re doing. So, in other words, your wife knows you played pickleball today; when if you talk to your kids or grandkids, “Hey. What’d you do today?” “Oh, I played pickleball,” that’s an affirmation that you’re doing well.

 

Allan:

Definitely. I’m listening to that, and I had two daughters, and I guess the biggest stress for me when I came off of watch-and-wait, was really the financial aspect. When I called up with my prescription, I was blown-away with the cost of the medication.

 

Andrew:

The co-pay, yeah, mm-hmm.

 

Allan:

Yeah, I have good health insurance, and I make a good living. But it was outrageous, but there is help out there. And I was talking to my older daughter, this is kinda my retirement, you know.

 

Andrew:

Right.

 

Allan:

Where it’s gonna be.

 

Andrew:

Right, well, I think that important to know. And I think for you in Canada too, Jay and Maureen, the policies are different. We’re in the US, you’re in Canada, there may be people watching worldwide, so there are kind of different issues. First of all, what can you get access to? And second, well, what treatment is right for you? And then, what insurance or policies in Canada, quite frankly, it varies by province what’s available to you. And in different countries, it could be that way as well. And then, based on your income, what is your co-pay; are you on Medicare in the US, what’s your co-pay; do you have commercial insurance? So, you’re right, there are – thank you for bringing that up, Allan, there can be financial questions for a family. And cancer treatment is expensive, for sure is certainly something to be wise about. So, Jay, you have these blood tests, and it sounds like your emotions sometimes go up and down. Have your doctors tried to tell you to, I don’t know, for lack of a better term, “chill-out” a little?

 

Jay:

Oh, absolutely. And I’ve just finally – after eight years I’ve gained some ability to do that. But it just – it was a function of education, of learning not to overreact to the blood numbers. And to look – because I’ve had times when getting my blood count—my white count right now is around 34,000; my last test it was 28, I think. And so, even a year ago I would’ve overreacted to that, I would’ve thought, “It’s gone up 6,000, that’s horrible!” but the fact is that the test before that it had gone down by kinda 4,000.

So, it tends to jump around, and one oncologist took the time to take me through the machine counting, the process of machine counting, and explained that it was dangerous to get too excited about one blood test. And so, that was probably a couple of years ago that he gave me that explanation, and it’s really now that I’ve had another half dozen tests, including one—and this was instructive—I think it was six months ago, my GP phoned me because my neutrophils were at 0.8, or something.

And he said, “Have you seen your – “he said, “How do you feel?” and I said, “Great,” and he said, “Do you have a cold or anything?” I said, “No,” and he said, “Well, I phoned the oncologist because I don’t like the look of the neutrophils,” and the oncologist said, “Well, have him go back in 10 days for another test.” When I went back, my neutrophils were 3.9.

 

Andrew:

Totally different.

 

Jay:

It went from the lowest rest I’d ever seen to the highest test I’d ever seen. So, either somebody in the lab didn’t know how to operate the machine quite as well they should, or there’s that swing in the quality of the machine counting; so that actually helped me relax.

 

Maureen:

Yeah, one of the really important things that the doctor said to us a couple of years ago was, “Jay, maybe don’t pay as much attention to the numbers, just how are you feeling. Make sure that that is at the top of your mind, not the numbers: how are you feeling?” Because through it all, Jay’s felt quite well, and we’ve done some amazing bike trips, and we’ve had some great adventures, and he’s felt good, so.

 

Andrew:

So, Maureen, there in that beautiful British Columbia and you’re around all these kids at a boarding school, can you just go live your life and say, “Yeah, he’s got this chronic condition, and he may need treatment again, and he gets occasional – but let’s just like put it aside,” can you just go, Maureen?

 

Maureen:

Yeah, we pretty much have to because it’s kind of overwhelming and there are always lots going on, and so many people to look after, that I think – we do struggle a bit with that. I think that sometimes Jay wishes there was more attention paid to him. But for me, it’s good to have lots going on. And we look forward to – because we’re at a boarding school, we get lovely long breaks together, and we’re just about to start six – eight weeks together now. And we’re really looking forward to that, and just spending the time on each other and, yeah.

 

Andrew:

Oh, nice. Nice. So, Ruthie, so, unfortunately, you work with CLLs, so it’s kind part of your work life. I’m not saying “unfortunately” because you help a lot of people, but does it get you down sometimes? Or you’re way past that?

 

Ruthie:

I mean, I think – like with anything like this in life, there are days – there have definitely been days since I’ve been working with Patient Power where you – where I talk to somebody who maybe has a completely different story than you do, maybe that’s tried 10 different treatments, or five or 10 different treatments that haven’t worked for them. And that’s kind of a snap to reality of just that it’s a serious chronic condition, and I’m thankful for the positive experience with the different medicines that you’ve had, and the long remission that you’ve gotten from that.

But it definitely – yeah, it definitely sometimes gets me down, and I think I’d be lying if I said sometimes it wasn’t a little exhausting to have it as such a present part in my life all the time. But I think that those days genuinely – they just give me a lot of fire to move forward to try and get people this information. Because if we can help somebody else in that way, hopefully, to not feel the way that I felt when I didn’t maybe fully understand it, or I wasn’t as clued-in, of course you want to do that. But absolutely, I mean, I think it’s natural for it to be stressful, or for it to be upsetting sometimes. But kind of like what Maureen was saying, is like: if you keep busy, and you keep moving, it’s really the only option. And I think with a serious condition like this, you can either let it really just impede your opportunity to function as a whole, or you can move forward and deal with it as it comes, and take things on face value, and do what you can with the situation at hand, so.

 

Andrew:

Well said. I’m just gonna make one comment about Ruthie’s mom, Esther. So, I had my CLL four-month check-up in San Diego yesterday. So, maybe it’s the same for you, but the way they do it at my clinic is: you go to the lab, and you get your blood test, and then, an hour later, you see the doc—in my case a world-famous specialist, Dr. Kipps. And then, he does his physical exam, and you chat for a little bit about your kids and stuff, and then, you go over the blood tests, okay. And you’re right, Jay, about: we look at the trends.

So, my platelets are a little down; lymphocytes are a little caca, but nothing terrible, and he felt it was a very – feels my lymph nodes. But Esther comes with me; Esther comes with me. And I really encourage her to do that, and I think she want to do that because she wants to hear it from him. Is the doctor smiling? Is the doctor relaxed? And I remember vividly he said, “This was a very impressive visit, I’m very impressed with how you’re remaining stable,” and that’s what Esther hears, right? And so, then, we go home, or we have lunch, and we’re good.

So, Allan: so your wife couldn’t be with us today—and she’s in the healthcare field—so, since you’re doing well on an oral therapy and very active, do you think about this much?

 

Allan:

It’s been in the back of my mind; it was at the very beginning. And the first thing – I took Cheryl, my wife, to the oncologist, we know him both personally. And the first thing he says to me, “You’re not die of this,” you know? That put me at ease. And then, talking about children, both my daughters were concerned about—they’re not in the medical field—whether or not it’s inherited. And my wife and I said, “No, it’s not,” so.

 

Andrew:

Right, yeah. To be fair, there’s a very – like a little blip of a – there are some families where they had two people with CLL, but it’s very rare; so, the “likely” to that is definitely very rare. And the other thing that I think—and again, Ruthie and I get to deal with this all the time, and you all have watched videos and been learning—is there’s been tremendous progress. I mean, so what I try to tell my kids is: of all the different cancers—I mean, brain cancer, not so much; pancreatic cancer, not so much; there’s some really terrible diagnoses, but we’re fortunate that the researchers have been able to get all these blood samples from all of us and do the research and develop products. And there seems to be a succession of products; I’ve seen it in the last six, seven years, tremendous change where, Jay, you got kind of the standard therapy in 2011—F and R—and done world-wide.

But what’s lined-up for you next will be whether it’s what Allan has, or I had a whole different—Ruthie mentioned that I came out of remission—I had a whole different treatment. I had an infused treatment of obinutuzumab, or GAZYVA, and that worked for me, and I’ve been in remission going on two years from that. So, it’s very individualized, and I think, Jay, you picked up on that in what you’ve been reading. So, you can drive yourself crazy with where somebody else’s story you assume is yours, even if it’s ZAP-70 positive, or whatever, you know? It could be good, bad, or indifferent, but it’s individualized to you. I’ve learned that.

I mean, Allan, you’re in the healthcare field, you see patients with the same situation, but yet, they’re very different, right?

 

Allan:

Yes. Definitely. I’ve seen some very sick patients; they’ve shared their, quote, “cancer stories,” and my wife even more so. I don’t have it so bad; there’s a lot of hope. There’s a lot of research; I’ve been fortunate so far.

 

Andrew:

So, let’s stay with you for a minute, Allan, how do you and the family look about your future? You got a couple of grandkids, right? I don’t know if you’ll have more. And wouldn’t it be great years from now to dance at their weddings? I mean, how do you view the future? And how do you generally all plan for the future?

 

Allan:

I take it one day at a time, but I’m enjoying life as it is. I’m working, I’m having actually the best time in my practice I’ve ever had because I’m doing what I like to do. I live in a very nice place. I get to do the activities I want; besides pickleball I play golf still, and I still ski. I’m fine. One of the things that was strange that happened to me: I went to two meetings with other podiatrists, and I was really feeling pretty bad about it at the time. I wasn’t on any treatment, and I said, “You know, I have this thing called CLL,” and my friend turns around to me, and says, “My father and uncle have it, and if you start complaining about it, I’m gonna wring your neck!” so to speak. Thank God there’s research out there, continued strives, and medication. And again, I’m grateful for this Patient Power.

 

Andrew:

Thank you.

 

Allan:

And all of the other – the charitable contributions as far as the finances are concerned for patients too.

 

Andrew:

Right. So, do you make plans for the future? You and your family?

 

Allan:

Yes. Yeah.

 

Andrew:

Okay, you just keep on keepin’ on. So, we have to mention just about future plans—Ruthie I want a big smile on your face—Ruthie about a week ago got engaged, so somewhere down the line is a wedding, and I’m gonna dance with that young lady at her wedding, and Daddy’s gonna be right there. And I have full expectations to do that, I don’t know whether it’s next year, or the year after. Her boyfriend’s in med school, so you know, Allan, it’s a long, long haul. But at any rate, we’re making plans. We’re doing stuff.

And you, in Canada, you guys have the summer off, or some of the summer off, and you’re gonna spend time together. So, do you make plans? I mean, how do you see the future, Jay and Maureen? How do you see the future, even while you’ve got this in your blood?

 

Jay:

Well, absolutely we make plans. And you know, your relationship to the time and the way the disease plays out is a big deal. When I was diagnosed, a week later, there was an article in Canada’s largest newspaper about CAR-T therapy.

 

Andrew:

Right.

 

Jay:

And I said to my oncologist, I said, “Well, that seems pretty good, can I get that?” and he said, “Well, maybe eventually; probably not,” and then yet, look at how far that therapy has come. I haven’t followed it extremely closely, but it’s my understanding that they’re trying to develop some more cost-friendly options for that, and whatnot. Ibrutinib was just on the horizon at the time; it was in early trials, I believe. And so, when I think of all the medications that I’ve read about over the years, and then I watch in Canada the approval process: Ibrutinib is approved, and [inaudible] [00:31:21] is in the process, and will probably be approved, and so forth. So, there are options, and so, I try to look at the next 20 years. And we – it’s changed our relationship to retirement, we kind of think, “Well, we’ll work another three years, and when I’m about 60, we’ll retire.” We should be okay, it’ll be a modest retirement, but it’ll be an opportunity to go and do some things that we would love to do in a healthy state. We make short-term plans in terms of: we’ve done a lot of bicycle touring, we rode 2,000 miles from Canada down to Denver four years ago on our bicycles, all self-contained; we rode from Ottawa to the Maritime Provinces the year before that.

So, I try to push myself physically because it’s that measure, and it’s a daily measure. I go out for a 20-mile bike ride, and that tells me how I’m feeling.

 

Andrew:

Right, me too. And it’s pickleball in Connecticut and bike riding there, and then I go jogging; right, that’s our barometer. So, Maureen, do you expect to have this guy around for a long time?

 

Maureen:

Yes, I do, and I’m counting on it.

 

Andrew:

Okay.

 

Maureen:

But that’s the difficult thing about being the partner in this: you don’t want to imagine a future alone. So, there’s no point in thinking about it; we’re just planning for a future together.

 

Andrew:

Mm-hmm, amen. And let me just talk to you – we talked about the kids for a minute, but do you have girlfriends, if you will, and they know that Jay has a cancer, and they’re worried about you.  And you have to sometimes set – I don’t want to say “set them straight,” but you have to let people who maybe don’t understand this whacky illness, and help them “get it” that he’s going on, and you’re going on bike rides, and you’re making plans, you know? Put it in perspective.

 

Maureen:

It doesn’t come up very often because Jay and I both work at the same place, and basically have the same friends. They see how healthy he looks and I don’t think very many people think about it. But when it does come up, I just – you know, I think when it first happened, I didn’t think I could manage. I didn’t think I should have to work or do anything except immerse myself in the grief of this terrible thing that had happened to us. But as the years have gone by, it just makes me realize how many people live with some kind of chronic illness, and you just do it. And that’s what I say to my friends, is, “You know, this is bad, but it’s not – but we’re just living with it, and we’re gonna be fine. You have to find hope in all the little things.”

 

Jay:

But one thing, Andrew, we work in a high school boarding school. And when kids are adolescents, they’re so self-absorbed, it’s really good for – it’s a really good place to work. Because they go – I could say to a class, “Well, I have cancer, you know,” and they’ll forget about that in two or three minutes because they just – you know, life is all about them. And I don’t say that cynically in any way; it’s just the stage of life. And that’s been really healthy because teaching courses, you need to concentrate on other people.

And I have my own profound capacity for self-absorption, so it’s a good thing to be in an environment where I’m sort of guided away from that, and away from the worry by my relationships with people. And I find that those—although I’m a bit of an introvert— those lift me up during my working day. And so, that’s been very positive, it’s a busy place, and we’re really forced—if we wanna be part of the community—to get on with life.

 

Andrew:

Get on with it. Ruthie, so you have lots of friends, and when they meet you—and maybe somehow maybe because I do a lot on the Internet—somehow they hear, “Oh, your dad has cancer.” Does everybody just move on, it’s not a big deal? Or do you have to sometimes sort of school people, “Hey, he’s been living with this a long time, he’s a busy boy,”?

 

Ruthie:

Yeah, I mean, I think the initial reaction when people hear the word “cancer” is people get very concerned, and people get very worked up. And then, when I say, “Oh, well, he has had since I was two years old,” they say, “Oh, well, you’re a lot older than two now, so I guess that’s a good thing.” And it’s – you know, I’ve been very fortunate to have lots of friends, and obviously my partner, who are really supportive and tuned-in to this stuff. And I think because I’m so educated on it, it is easier for me to be able to speak with my friends about it and feel confident in the way that I speak about it, and the way that I’m hopeful about it.

I think the other thing that’s really interesting is just with the way that the Internet is now and everyone being so connected, and knowing a lot of intimate details about people’s lives, is that a lot of people are affected by cancer, you know? Whether it’s them directly, or their parent, or their grandmother, or grandfather, or a friend, and I think there’s almost some kind of camaraderie in that. They said, “You know, we all are impacted by this in some way, and if we can keep moving forward, and being hopeful for each other, and kind of willing it into the universe that hopefully, as long as people can get the right care for them, that they’ll live a long life.” I think that’s kind of been settling, for me and for the people that I surround myself with. And I think it’s been really positive, even though the root of being connected by something like cancer is something you never hope that someone can relate to you on.

 

Andrew:

We don’t choose it.

 

Ruthie:

It’s almost – right, but it brings some kind of peace in the fact that you say, “Hey, I know what you’re going through,” or “I know somebody who went through what you’re going through.” And I feel that I’ve been able to hopefully, give some of that insight to some of my friends who have with their parent, or with someone else in their family, been able to face it and say, “Hey, you know, I’ve been around this for my entire life. And I really don’t remember a world where it wasn’t a part of my life.”

And it helps when they see all of your adventures on Facebook, and all of the wonderful travels that you do, that you’re like, “You know, Andrew’s just out there and just doing it,” and it’s not letting it limit you. And I think that that brings a lot of peace to the topic.

 

Andrew:

Amen. So, we do home exchanges, and so, we’re going to Sweden shortly. And so, at that conversation with the oncologist yesterday, I said, “There’s a big CLL cancer institute in Stockholm,” Karolinska it’s called. And I said, “Could you make an introduction to the CLL specialist there, just in case something went south, or whatever. He said, “Sure,” so that gives me confidence, so now I’m a little less worried, I’ll take my little antibiotics with me, but we’re going. We’re going, okay? And I think that’s what any of us – for any of us about going – I wanted to just share one little story I’ve shared before about communication with children.

Now, many of us as we are diagnosed with CLL are older, but actually, I was diagnosed when I was 45, which is young for CLL. Allan, you were – you got some white hair, so you were a little older. But, so Ruthie’s older brother, Ari, was just like, what? Six, or something like that, and he knew there’d been a lot of whispering in the house, and something’s going on with Dad, and there are doctor visits, he knew something was going on. You know, a lot of hushed tones. And so, I was talking to him at bedtime one night, and he was just six, and he said – I said—Ari is his name—I said, “Ari, Dad has a sickness in his blood,” and I’ll never forget this question—our family’s Jewish—he said, “Well, will you be at my bar mitzvah at age 13?” which to him was like forever, you know, in the future.

 

Ruthie:

It was, yeah.

 

Andrew:

Yeah, and I said, “Yes.” Now, at that time—and this was, what, 2000 or 1999, whatever it was—I didn’t know. I really didn’t— 1998—I didn’t know. And the treatments weren’t so good; there was a lot of question. So, flash forward years later—at a bar mitzvah often the parents give a little talk, and there’s a blessing of your kid, and all that—and so, I gave a little speech. And everybody in our community knew what was going on with me. And I told the story of telling Arian that I didn’t really know whether I’d be standing there that day, and here I am, and everybody was crying and stuff like that. But my point is, I’ll never forget talking to the kid, but I’m so glad I did.

And one last thing is: the other day I had coffee with a guy here in California; he’s in his mid-50s, diagnosed with CLL; has started treatment like you, Allan, but he hadn’t told his kids, teenagers. And he was struggling with whether he was gonna do it, and he was waiting for them to finish school in June. And I said, “Do it,” and his wife has eight siblings, all living in the area, and they hadn’t told anybody. And he hadn’t told his parents. And they’re all talking all the time, it was like the elephant in the room. And I said, “You will feel such a load coming off you,” so I have to check back with him; so now the kids are out of school, hopefully, he’s told them.

So, Allan, would you agree openness puts it in perspective for people?

 

Allan:

Yeah, I hear a lot in my own practice, a lot more horror stories. And yes, I’m a person who shares also like you, and I hope I have the same story with my grandsons for their bat mitzvahs – bar mitzvah.

 

Andrew:

Yeah, yeah, they will. You will. So, I think, again, I get to hear – talk to all the doctors, and Ruthie does research, and we get to meet everybody, and I would just say for our audience and for you guys: it’s a really, really positive time. It doesn’t vary by people. Jay mentioned CAR-T; there are some CLL patients who’ve had CAR-T. I was following a woman on Facebook who had CAR-T at MD Anderson in Houston just last week, and then, she was happy to be walking out of the hospital and at last check was doing well. Do we know how this experimental approach is gonna work, or for how long for the sickest people with CLL, the very sickest people? But Jay, we didn’t – going back to when you saw that article, that was like pie-in-the-sky, and now there are people benefiting from it.

So, I think we should – in our conversations, I believe in open conversations with people. They can see us play pickleball, they can see us go on 20-mile bike rides, they can see us dance at our kid’s wedding—Ruthie—and to say: well, you would rather not have it, for sure; you’d rather be cured, for sure; but short of that, if you can live well…right? Right? So, Maureen, can you put your arm around this guy, he’s gonna be okay?

 

Maureen:

Yeah, absolutely!

 

Jay:

Andrew, just on the openness issue, because I teach English and I’m accustomed to talking about all kinds of human elements, I decided early on just to be completely open with people. And they’re often far more uncomfortable than I am because the “C-word” is being used, and they are – it makes them immediately anxious. Because I think some people – you know, you have a lot of acquaintances and a few friends, and the acquaintances think, “Oh, well, he was treated in 2012, he must be cured.” And so, they won’t necessarily even have an awareness that it’s an ongoing condition.

But I just have always from the beginning—after a few months, after I grew accustomed to the diagnosis—tried to be just very straightforward with people about options. And that’s really what I always think of, that’s the way I think of it; I think I’m fine now. This could go another five years before I need treatment, and it could be a year. It’s impossible to know. But I can immediately identify the likely next treatment; and failing that, I know there’ll be other options. And then, I’m starting to be able to see beyond that treatment to the treatment after that. So, God willing and the creek don’t rise, I could be around for quite a while.

 

Andrew:

We’re gonna do this again in like 20 years, okay? We’ll do it like through holograms or something. Okay, well we’ve had a great discussion. I wanna thank Jay and Maureen for joining us from Canada; I wish you happy bike rides in Canada. Dr. Pickleball Allan, you with grandkids and everything, have a great time. And if I ever need a sports medicine podiatrist, I’m gonna come over to Connecticut and have you look at my feet, okay? And then we’ll go – we’ll play pickleball, okay?

 

Allan:

Sounds good.

 

Andrew:

And Ruthie Clara Schorr, I’m gonna be dancing at your wedding. Thank you for sharing your story, and thanks for your dedication to people in the CLL community. And again, relationships are important, open communication— we’re all believers in it—and go live our lives. Thanks to the Patient Empowerment Network for pulling this all together. Thanks to their funders, AbbVie and Pharmacyclics, and let’s keep that research going, and let’s go live our lives.

In California, with my friends in Miami, and Canada, and Connecticut, I’m Andrew Schorr. Remember: knowledge can be the best medicine of all. Thanks for watching.

Helping Seniors With Long Term Recovery: Tips For Carers To Make The Process Easier

Every year over 525,000 Americans experiences their first heart attack while around 795,000 people experience strokes. Of that number, 75 percent of them are aged 65 and over. Recovering from medical conditions such as these can be a long road for older people. As we age, so does our bodies and immune system and recovery can take a longer time. The process of healing and returning to optimal health can be a stressful and trying time for both seniors and their caregivers, whether they are patients that are newly diagnosed or living with it for years. By implementing simple changes, you can ensure the process is a smooth and easy one for either yourself or a loved one.

Arrange For Help Sooner Rather Than Later – Both Personal And Infrastructural

The days immediately after medical events such as strokes, cardiac episodes, and even falls can find older Americans feeling frail and with limited movement. Small adjustments to both their living environment and making help available can help them in those initial times. Standard additions such as the placement of bath rails and reorganization of items to a more accessible level can help them maintain some level of independence and prevent further harm. Slips and falls are one of the most commonly reported incidents amongst seniors in America. Around1 in 4 older Americans experience falls each year and in those times where they are in long term recovery, these chances increase sizably.

In addition to making your home accessible, be sure to plan with other family members or carers a timetable to be present and help, particularly in the early days after being released from the hospital or care facilities. This is also the point where you will need to consider whether you can provide the level of long term care that person may need and do so comfortably at home.

Weigh Their Rehabilitation Options- Care Facilities Vs Recovering At Home

Speaking of providing long term care, considering the best rehabilitation option is one of the most important decisions in the recovery process of an older loved one. While most of us prefer to age at home, in a place surrounded by family and comfort there are cases where care facilities may prove to be better medically and financially. Some stroke patients can suffer long term loss of their motor skills and require round the clock care and physical rehabilitation. This can prove to be along, tough road and requires much commitment from both the caregivers and the patient. One of the most cited reasons for families not choosing assisted living is its costs. Take the time to inquire whether their state health insurance covers senior facilities and the extent of its coverage. Only then can you align your budgetary reach and make a decision on what you can afford.

Don’t Forget Their Mental Health

Our physical and mental health are strongly linked; a decline in one can impact the other. In long term recovery for seniors, this is particularly prevalent. Approximately 15 percent of adults 60 and older deal with mental illness including clinical depression. According to the Center For Disease Control and Prevention, 1-5 percent of the senior population are affected by depression. This can be further broken down into 13.5 percent of those that require home healthcare and 11.5 percent of those in hospitals. In addition, certain illnesses can trigger or worsen these symptoms including dementia, strokes and multiple sclerosis.

For those recovering, this can stem from long hospital stays or even PTSD from the actual event such as a stroke or fall. In long term recovery, there can also be a loss of motivation and sometimes, poor mental health can be influenced by a drastic change in their lifestyle such as regularly being active outdoors. It is important that we pay attention to both mental and physical recovery as they interrelate with each other. Think of ways to keep your older loved ones recovering (or in some cases, yourself) motivated. Account for small progress and celebrate them as targets. In addition, speaking to a professional or even confiding in a family member can be beneficial to them getting their thoughts out. While the way life may look may have changed, its new routine does not necessarily have to be viewed through a bad light. Establishing hobbies and a strong support network for senior citizens can prove invaluable during this time.

Medication Maintenance Tips for Caregivers

Managing medications can be difficult to do, especially if you’re a senior caregiver. Helping someone else remember to take medications on time and work to find the right balance for them can seem like a daunting task. Thankfully, we’ve got a list of tips and tricks to help make things flow more smoothly.

Make Sure Providers Are Aware Of Vitamins And Supplements

Medical providers should be aware of any vitamins and supplements a person is taking. Regardless of how natural they are, they can interfere with medications and other treatments. For example, someone on blood thinners should not be taking a supplement with vitamin K. Most blood thinners work by inhibiting the production of this vitamin in the body. Taking a vitamin K supplement can negate the work of blood thinners.

Instructions

Make sure to go over medication instructions with the senior you’re caring for. If they are able to, they should know the names of each medication along with dosages and what times to take them. It doesn’t hurt to type up instructions about medications so that all information is in one place and easy to access. Consider adding in what side effects they should seek help for. That can serve as a list for caregivers and seniors to check on in case of adverse events.

Alarms

Set alarms to remind seniors to take their medications. There are many options to choose from. Smartphones allow you to set up reminders with different sounds each time which can help people differentiate between medication doses and other alerts. Electronic personal assistants like Alexa or Google Home can easily be used for reminders as well. If the senior you’re caring for struggles with newer technology, consider a few alarm clocks around the home.

Keep A List

Keeping a list of medications can help seniors and caregivers alike remember what medications are due at what time. Lists that have both a visual of what the medications look like and allow people to check off a medication dose can be useful tools. If you’re going with this kind of list, make sure that you have multiple copies. Placing one next to a pill organizer and another on the fridge can help remind people to take medication before they’ve even missed a dose.

Smartphone apps can also be helpful in tracking this information.

Follow Up

It’s important not to just set alarms or reminders, but check in to ensure that someone has taken their medication. It can be easy to turn off an alarm and still forget to take medication as scheduled. Following up with the senior in your life can remind them that they didn’t take their most recent dose.

Store Medications Properly

Most medications do best when stored between 68 and 77 degrees Fahrenheit. Additionally, many of them need to avoid humidity, direct sunlight and more. Medications should not be stored in vehicles, on windowsills or other sunny and warm spots or even in the bathroom. Consider storing them in a cool, dry space in the kitchen or living space.

When medications aren’t stored properly, it can affect their potency and make them potentially dangerous. If you’re concerned that your senior’s medications have been affected, here’s what you need to watch out for:

  • Odd smells
  • Discolored pills, tablets and injections
  • Cracked or crumbled pills
  • Pills and tablets that are stuck together
  • Creams and ointments that show separation
  • Cloudy injections

If you see these signs, contact your senior’s pharmacist as soon as possible.

Sort Medications Into Pill Organizers

Set aside time each week to go through the medication your senior takes and place them into pill organizers. These can make it easier to remember to take medications as prescribed or even transport them while traveling. Some organizers can remind people to take their medications and even alert others that a dose has been missed.

Make Sure All Caregivers Know About Medications

A sure way to have seniors miss their medication doses is to have senior caregivers who aren’t on the same page. Without everyone being in the know, it becomes increasingly difficult to set reminders and follow up with seniors about medication doses.

Plan Ahead For Refill Needs

Refills may come up on days where a senior is alone. When that’s the case, they may forget or be unable to pick up their refilled medications. Refills may even be due when someone is planning to be out of town. Make sure to plan ahead adequately for refills and work with a person’s pharmacist.

Consider Compounding Medications If Needed

Compounding is a process where medication is tailored to a person’s specific needs. This can help remove any dyes a patient is allergic to or turn a pill into liquid for those who struggle with swallowing pills.

Get Tips from A Medical Provider

When methods to help your senior aren’t working as well as you had hoped, take some time to check in with their medical providers. Nurses have amassed a wealth of information on improving their patients’ quality of life. They are likely to have some ideas on how to make managing medications more effective.

Always Communicate With Family Members

Whatever steps you take to maintain a senior’s medication schedule, make sure that you’re communicating any difficulties with the senior’s loved ones. Family should also always be aware of any medication changes. When so many seniors rely on a variety of paid and family caregivers, it’s incredibly important for everyone to be in the loop on the storage, administration and organization of all medications, vitamins and supplements.

Notable News: November 2018

November is National Lung Cancer Awareness Month, and if ever there were a cancer that needed an awareness month, it’s lung cancer. Sometimes referred to as the invisible cancer, lung cancer is a disease caught up in a smoke cloud of misconceptions, and those misconceptions can prevent patients from early detection, treatment, and support. Several of the myths and misconceptions about lung cancer are addressed and dispelled in a recent article at fredhutch.org. One of the main myths is that you only need to worry about lung cancer if you are or ever were a smoker. That’s simply not true. In fact, people who have never smoked can get lung cancer, and it can be a genetic disease. Other myths include the belief that there are no early detection screening processes and that there has been no progress in lung cancer research. While it’s true that other cancers seem to have more screening options and better prognosis, advancements are being made in lung cancer. Organizations such as Patient Empowerment Network are making progress in building awareness and reducing the stigmas about lung cancer. See the rest of the myths and misconceptions and how they are dispelled here.

There is nothing sweet about having lung cancer, but there may be a sugary clue that could lead to earlier detection, reports forbes.com. Researchers have discovered that early-stage, non-small cell lung cancer (NSCLC) tumors and precancerous lesions produce high levels of a molecule that they use to consume sugar to help fuel their growth. The molecule, called SGLT2, could be used to detect early stage NSCLC. Researchers also found that a diabetes drug, which blocks SGLT2, also prevented tumor progression in mice, which shows promise for possible future treatment of NSCLC. Further studies of SGLT2 could hinder the development of malignant NSCLC, and more information about this hopeful development can be found here.

Another hopeful lung cancer development comes in the form of a hot needle, reports dailymail.co.uk. The treatment, called radio frequency ablation, is being used to diagnose and treat difficult-to-reach tumors. In addition to being able to destroy the tumor by heating it up with radio frequency energy, doctors are able to use the needle to remove part of the tumor for biopsy. The needle works in place of attempting to access the tumors through invasive surgery. The hot-needle treatment is considered safe for repeated use, and a report showed that half of the patients treated with the hot needle survived at least five years. More information about this hot new treatment can be found here.

We would be remiss if we didn’t note that November is also National Family Caregiver’s Month. There are approximately 43.5 million unpaid caregivers in the United States and they are a critical component of a cancer patient’s journey. It is important for caregivers to make sure they are practicing self-care as well, and there are a number of resources available to them to help ensure caregivers have the information they need to care for their loved ones and themselves. The PEN Path to Patient Empowerment guide provides resources for care partners, including links to the Family Caregiver Alliance website and the American Cancer Society Caregiver Resource Guide. Chock full of information for caregivers about caregivers and the patients they care for, these resources are a must have for any caregiver and can be found here and here.

Oh, and November is also the month where we give thanks. Happy Thanksgiving from the PEN Family to your Family. We are thankful for you!

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