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Managing Non-CLL Health Concerns

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Published on January 17, 2020

Key Takeaways

  • It helps the patient to establish a relationship with a care team that they feel confident in and trust.
  • Voicing concerns to the appropriate specialist, while keeping the oncology physician and nurse informed of any changes helps in patient care.

Chronic lymphocytic leukemia patients meet to discuss managing both their CLL related and non-CLL related health concerns with long-time oncology nurse Sheila Hoff. CLL patients share stories of navigating facing a chronic condition and mitigating other issues that arise. Each patient with CLL has a different story, and it is important to know how to build a health team you can trust and who to turn to with questions about your health. 

This program is sponsored by Pharmacyclics. This organization has no editorial control. It is produced solely by Patient Power.

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Transcript | Managing Non-CLL Health Concerns

Please remember the opinions expressed on Patient Power are not necessarily the views of our sponsors, contributors, partners or Patient Power. Our discussions are not a substitute for seeking medical advice or care from your own doctor. That’s how you’ll get care that’s most appropriate for you.

Andrew Schorr:         

Hello, and welcome to Patient Power. I’m Andrew Schorr in Southern California. And we’re going to talk about something on this program that is important for all of us because, really most of us living with CLL have other health concerns too and we may have other doctors. We probably surely do. How do you know when something that’s going on for you is CLL and who do you call? Well one person who’s gotten calls for over 30 years is Oncology Nurse Sheila Hoff, who joins us also from the San Diego area. Hi, Sheila. You have gotten a lot of those calls, haven’t you?

Sheila Hoff:               

Yes, I have. It is very difficult for people who are at home and having different symptoms to figure out, really, who they should call. A lot of times they say that they called – that they called my because they know I would probably answer the phone, so sometimes, that’s their choice of who to call. But, yeah, it is a difficult thing to navigate.

Andrew Schorr:         

Okay. Well let’s go around the country with our panel of CLL patients, and I want to introduce you to them and tick off the specialists they have, not just their hematologists but the others, and then we learn how complicated this can be. So, first of all, let’s go up to Latham, New York right near Albany. Christina Weary. Hi, Christina, thank you for being with us, first of all.

Christina Weary:        

Hello.

Andrew Schorr:          

Hi, Christina. So, Christina, just tick off the specialists that you have in your Rolodex, if you will.

Christina Weary:        

I have a cardiologist, a pulmonologist, a rheumatologist. I have multiple orthopedic surgeons at hand. I have a hematologist. I have my family doctor.

Andrew Schorr:          

And a gynecologist?

Christina Weary:        

Yes, and a gynecologist. 

Andrew Schorr:          

Okay.

Christina Weary:        

I want a wrist band. 

Andrew Schorr:          

Okay. Now let’s go to Buffalo Gap, Texas near Abilene, my friend Lynn Bailey. Lynn’s living with SLL, very really analogous to CLL, and Lynn, specialists you have? Tick them off.

Lynn Bailey:

All right. I see a nephrologist, kidney diseases. I see a urologist, also kidney related, and I see a pulmonologist which is a new one that’s been added. They are watching something going on in my lungs or whether it’s developing or not caused by the medicine I’m on, which is ibrutinib (Imbruvica) or if it’s just something that’s there and slow progressing.

Andrew Schorr:          

Right, Okay. And now let’s go to – where are we going, Bullhead City, Arizona? Eliot Finkelstein. Hi, Eliot. 

Eliot Finkelstein:        

Hi. So...

Andrew Schorr:          

And so, Eliot, your specialists?

Eliot Finkelstein:        

My specialists, well I’ve got two dermatologists for both dermatomyositis, as well as, oral lichen planus. Then I’ve got two endocrinologists for my thyroid Hashimoto’s, as well as, osteoporosis. And then two oncologists.

Andrew Schorr:          

Phewf.

Eliot Finkelstein:        

And an eye doctor. 

Andrew Schorr:          

And an eye doctor, right, we all have eye doctors...

Eliot Finkelstein:        

One of my drugs that I take. 

Andrew Schorr:          

Yeah. Yeah. We’ve all got that. So, Shelia, us listing this, this is kinda typical because usually people are older with CLL – not always – and so we end up with other health issues, even like the eye doctor that Eliot was just talking about as our vision – as we age, so this is pretty typical, isn’t it, Sheila?

Sheila Hoff:    

Yes, it is. We – the median age of CLL is 70, so people usually – it’s more unusual to not have other health issues than to have them.

Andrew Schorr:          

Okay, and I, Andrew didn’t weigh in here, 23 years or so with CLL. So, I’ve got a pulmonologist. I’ve got an ENT. I’ve got a urologist.

I’m forgetting something else, probably. An eye doctor, an ophthalmologist for sure. I think that’s right. I think that’s enough for me right now. A cardiologist I have been to as well. So, okay. Sheila, let’s just start with you for a second. Are there any general rules like whether – let’s say if we are in active treatment versus if we are not. Like Lynn is on Ibrutinib, so he wonders is it a side effect? Are there any general rules as to when to call you, the oncology nurse, or when to say, “Oh, it’s a breathing problem or it’s this or that?”

Sheila Hoff:    

Well my rule of thumb is usually to go ahead and tell people if they’re not sure to go ahead and give me a call, the oncology. Because most of the time – well, especially if they are on therapy – the potential side effects can be more serious. So, I want to make sure that they can get an answer as to how – what they should do next.

Andrew Schorr:          

Okay. So, what do you tell people? Do you say – do you then direct them, you know, Mr. Johnson, “I think this may be a pulmonology issue, you have a pulmonologist you should –” So, do you triage it or how do you direct people? 

Sheila Hoff:    

That’s exactly it. I try and have them describe their symptoms, what’s going on, how long, and see if I can figure out whether which subspecialty to direct them to. I think – and you have your healthcare there at UCSD – kind of makes it nice when you are able to be at a larger facility because then we can often see other testing and other things that specialists have done, so that is definitely a help for us. But when you’re – it sounds like many people are in more rural settings – it is difficult to kind of piece together that coordination with all your sub-specialists and trying to get one healthcare system to talk to another is often a challenge also.

Andrew Schorr:          

Yeah, so Christina, you are nodding your head? I mean you had a car accident....

Christina Weary:        

Right.

Andrew Schorr:          

...and you had all kinds of orthopedic issues. You developed lupus, an autoimmune condition, right?

Christina Weary:        

Right.

Andrew Schorr:          

And so, how do you, yourself, kind of know – and I know you run a support group in Albany for CLL folks – how do you both counsel people and for yourself figure this out?

Christina Weary:        

Well, I’m a nurse, actually.

Andrew Schorr:          

Oh, are you?

Christina Weary:        

I do have a background so and sometimes that helps, sometimes, I guess maybe it doesn’t. I have a history of pericarditis and I have problems with chest pain and shortness of breath. And I typically start out with my cardiologist, and if he doesn’t think it’s pericarditis then I got to my hematologist. If that doesn’t work then I got to my rheumatologist, so I go from one to the other until I get to the right one, unfortunately.

Andrew Schorr:          

Now, where you are near Albany, New York. Are you in any central system where they can all see your records or if you had a certain test or medicine where they can see it, like Sheila was talking about in San Diego?

Christina Weary:        

Well, ideally. I have tried to get my care centralized when my medical care became much more complex, my family doctor wanted me to move to Albany Medical Center where everything could be under one house for that very reason. But my hematologist just is located in a different system, actually, so she can’t get access to everything else, so it makes it a little bit more complex. But you can always have the doctors transfer the records. 

Andrew Schorr:          

Yeah, I’ll just make one comment about that. So, here in San Diego, and this where Sheila is and Sheila has also been in the City of Hope, up road and near Los Angeles, another major cancer center. My – I go to two different systems. One is called Scripps and one is UC San Diego Health. Fortunately, there are on this big electronic medical record systems, Epic, and I, as a patient, have given authorization for them to talk to each other, the two healthcare systems. And I can see it all in one place and they can see it, too, with my permission. So, in this age of electronic medical records or trying to get there, what about in Buffalo Gap, Texas, Lynn, you know with your different doctors?

Lynn Bailey:    

Well, and we are 400 miles from the medical center at MD Anderson, so I do need the support of the doctors here. Now, since I’m SLL, what they see on the CAT scans – the CAT scans are done more frequently to track the disease. So, one of the things that they were following were picked up on CAT scans, and initially I would see a doctor at MD Anderson, like a urologist. And then, I would get a referral to one locally, and then I would need to get a copy of the CT scan disk sent to me so I could share that with my doctor. If they want to see more than just the written report, which I can pull off of this central system, they want to see the images as well.

So fortunately I’ve been quite healthy, but I usually correspond with my nurse at MD Anderson and my doctor via email, and explained what the situation is, give them an update, like on Periodica, CBC, I’ll give that to them once every three months, but, sometimes it can be difficult getting a hold of somebody remotely like that. Or sometimes, even those that don’t have that problem, just getting a prescription refilled sometimes can be frustrating.

Andrew Schorr:          

Yeah. And Eliot, what about you and Bullhead City, Arizona?

Eliot Finkelstein:        

Well, most of my work now is done at Mayo clinic, which is about five hours away. Now I can schedule the trips and group all the doctors together. But, locally, I get my infusions here. I take venetoclax (Venclexta) every day, so minor stuff is here. But if I have any issues then I have had to run to the Emergency Room because none of them doctors really know around here what’s going on.

Andrew Schorr:          

Mm-hmm. Yeah, okay. You go to the Emergency Room, goodness. And in the Emergency Room, do they have access to any of your records from any of these other places?

Eliot Finkelstein:        

I actually have it written on a sheet of paper, a regular-sized sheet of paper. I’ve got all the drugs I take. I’ve got all the diagnosis I take, and all my allergies and I just hand it to them. So, one time, when I had food poisoning, I handed it to the doctor over the course of two days. That sheet of paper was copied at least a dozen times.

Andrew Schorr:          

Wow. Now, Christina, are you in any active CLL therapy – 

Christina Weary:        

No.

Andrew Schorr:          

No?

Christina Weary:        

No. I am in watch and wait still. 

Andrew Schorr:          

Okay, but Lynn, you’ve had Imbruvica, ibrutinib and in the venetoclax, you are venetoclax-familiar. So, Sheila, let me ask you about this. So, these are not – well relatively new drugs – I mean we haven’t had them forever, and they continue to learn about side effects or even how if might affect one individual versus another. So, it’s tough – for at least Eliot always to know – could it be the venetoclax doing something that he feels. And same for Lynn, could it be some side effect of the Ibrutinib? So how do we sort that out? What’s maybe, when they are in active treatment like that, how do you sort that out, or could it be these other conditions that they have?

Sheila Hoff:    

Well it is difficult. One of the things that I try and share with people is that you would hope that we would be able to figure out exactly what went with what. But many times, there are symptoms that people will have that, especially if they’re like indigestion or fatigue or headache, a lot of those are difficult to pin down to one thing versus another. So, a lot of times instead of trying to figure out exactly what caused it, we try and just manage the symptoms. If we know it’s not something that’s more serious, especially someone who has a cardiac history like Christine does, you want to make sure it not something where it’s going to affect a major organ. But if it’s something where it’s symptom-management, I think many times, I have always – we’ve tried to just manage the symptom – whether it’s related to their CLL or not. Because sometimes you can tell exactly what it belongs too.

Andrew Schorr:          

Well, okay. So, I can think of a couple of do-not-pass-go situations for those of us with CLL. When would be a cardiac issue for anybody, right? And I think several of us do have cardiologists, and the other do-no-pass-go situation for CLL would be infection.

Sheila Hoff:     

Yes. 

Andrew Schorr:          

 –and getting a fever.

Sheila Hoff:    

Fevers are always the same. I tell people always please call – sometimes many different sites – I’ve learned this having gone and worked in a few places, is that each site has its own cutoff number, 100.4, 100. – so there’s always those numbers that people have to remember. And I try and encourage people to go ahead and call if you have a fever and then we’ll figure it out. What I am always afraid of is someone will say, “Oh, that’s not too high.” Or, “I feel okay.” And it ends up being a really bad infection. So, you are right, Andrew, I think infections, especially in CLL, are things that we need to put higher on our list of things to call for.

Andrew Schorr:          

Okay. Call your hematologist, your hematologist nurse if you’ve got a fever, right, and we’ll see what the fever is. But I think I would call sooner. And I’ve called Sheila, and I’ve called her former compatriot – Sharon there at UCSD – numerous times, a couple of times before I was retreated for CLL, we were really concerned about pneumonia. That would be very bad news for us folks. So, you really want to get on it. But, okay. But was about the side effects? And let’s take about the cardiac stuff, so with Ibrutinib, there can be some cardiac issues. I know atrial fibrillation, so should Lynn be calling the cardiologist, or should he call – and how do you know when if it’s acute? What do you do? Do you run to the Emergency Room like Eliot? Sheila, what about that? 

Sheila Hoff:    

I definitely think if there’s any hesitation or any question at all, it should be treated as an acute issue and go to the ER. When we’ve had people develop atrial fib on the Imbruvica, we have actually sent them to a cardiologist because in the state of sub specialization, we can say – we can look at an EKG and say that’s atrial fib – but as far as treating it goes, we have a number of patients who do develop that and have been able to be treated for the atrial fib. It’s stabilized and they’ve been able to stay on the Imbruvica. So, I think it depends on a situation. Each one is unique. It’s up to the cardiologist, obviously, and the hematologist, but you’re right. I think that’s one of those things where any chest pain, any irregular heartbeat is go to the ER, get an EKG, and then they’ll let us know, or let the patient know, what’s – how serious it is. 

Andrew Schorr:          

Okay. Now, so Christiania, you’ve got lupus.

Christina Weary:        

That’s correct.

Andrew Schorr:          

So that’s an autoimmune condition – and I don’t know everything about lupus – but I’m sure as an autoimmune condition, just like you have systemic CLL, even watch and wait...

Christina Weary:        

Right.

Andrew Schorr:          

It can affect different parts to your bodies in different ways at different times. How do you sort that out? Who’s that bad guy at any one time?

Christina Weary:        

Now, what’s interesting you bring that up because I’ve ended up with my hematologist, when it’s actually been the lupus. And it’s been the shortness of breath, and it’s actually been the rheumatology specialty where I should have been, probably. So, you are really hitting the nail on the head.

Andrew Schorr:          

And also...

Christina Weary:        

...it’s good stuff to know.

Andrew Schorr:          

Yeah, it is, and I am trying to get some guidance here. So, Sheila, – she’s in watch and wait – so she doesn’t know when CLL is going to start pressing buttons for her, with symptoms maybe she’s never experienced before. So, let’s just talking about watch and wait. We’ve got, Eliot’s pretty experienced with it. Lynn is pretty experienced with it, and all on active therapy, but she’s not. So – and we have many people I watch and wait, we don’t know to expect. So how do you guide us through that?

Christina Weary:        

My lymph node symptom was...

Andrew Schorr:         

Oh, go ahead...

Christina Weary:        

...typically chest pain for the pericarditis and then the new symptom I have was shortness of breath, so it wasn’t a typical lupus symptom for me. It was shortness of breath. I couldn’t breathe, so I called my hematologist not knowing what was happening.

Andrew Schorr:         

Yeah. Yeah. So, Sheila, what about for watch-and-wait people? We don’t know what to expect when we’re in that bucket.

Sheila Hoff:               

Again, I think and – and Christine hit it on the head – I think it’s  that, I think all healthcare providers, when people are having serious symptoms, want to help. So, we have, in Dr. Kipps' practice, we had, I think at least three people I can name, who also had other autoimmune including lupus. And so, it is difficult sometimes to, again, pin down exactly which symptom is caused by which disorder. So, I think the most important thing is, don’t wait. Don’t think it’s going to pass, and call somebody. It ended up – it sounds like that your hematologist took care of the pulmonary problem – but in some ways it’s okay because someone took care of it and they’re also MDs. I mean they’re all physicians who have been trained at one time or another in how to take care of all different kinds of problems.

So I think the most important thing – I think the thing as a nurse that distresses me the most is when people call me like a week later and they had like a really high fever and they didn’t call, or they had – like you said, difficulty breathing, I thought it would pass, and they just kind of said well we just suffered through it. I think the real important thing is to go ahead and call. I mean for me, personally, I don’t know of a doctor who says, oh no never call me, I don’t want to hear about your symptoms. I think we are all in it to try and take care of patients. And I think the most important thing is to try and get a hold of somebody and if it’s not exactly their subspecialty, they can at least refer you or help you get somewhere else.

Andrew Schorr:         

Hmm. Okay, so Eliot’s been to the Emergency Room and hands in a sheet of paper with a lot of stuff printed out and then they’re looking at it, but and trying to decipher it, and yet here CLL is in your blood, in your bone marrow – could be anywhere. Lupus could affect you systemically, right, so there if you present yourself to the Emergency Room they’re – I mean I know Christina had a car accident and probably went to the Emergency Room – I mean I know they do that and I know they deal with acute heart stuff, but our situation may be more complicated with these different conditions. So, should we make the call first probably to our oncologist/hematologist, and you guys sort of triage it, rather than do we run to the Emergency Room, other than like stroke issues or heart attack issues? You see what I mean, Sheila? Is because I don’t want to sit in the ER for three hours while they are just scratching their head because they are unfamiliar with what I’ve got.

Sheila Hoff:               

I agree with you. I think the easiest thing to do, or the most prudent thing to do, would be to call your hematologist or the nurse to try and get some help with triage. But again, I think that – I try and always impress things fever, chest pain, shortness of breath, bleeding that doesn’t stop, there are just kind of a list of things that I try and encourage people – and especially we’re there Monday through Friday. And most things happen, right, on Friday night and on the weekend, so I don’t want to discourage people from seeking ER help if they have concerns. I think that would be – I mean I know nobody likes to be in the ER. I’ve been there a number of times. I broke my ankle. But I just think it’s – we’re fortunate to live in a country where we have very good medical care. And I would hate to think that somebody wouldn’t seek emergency care if they really needed it.

Andrew Schorr:         

Okay. I have one other question then I want to go to my panel here because I know they have tips that they’ve done. So, I think even now with Medicare, I’ve got it, but depending on what kind of insurance you have – and I hope you have insurance – there’s often a 24-hour nurse increasingly to call. And I imagine, Sheila – and I don’t know if you’ve ever been in one of these centers – but imagine the nurse has this screen and they’re all these what they call – Eliot let me see if I get it right if I get it right, your more tech – algorithms...

Eliot Finkelstein:       

Mm-hmm.

Andrew Schorr:         

...right? So if you say it hurts here they go through another screen and they ask you a bunch of questions, but again, we have more – I’m not saying they don’t get calls from complicated patients, we are all here complicated patients, how much should we rely on the 24-hour nurse line?

Sheila Hoff:               

It’s better than not calling, and you’re exactly right, Andrew. I think that obviously calling somebody who you can just say, hi, this is Andrew, this is what’s happening, and I already know your medical history in my mind is the optimal situation. But I think in lieu of having something serious missed, especially with like ibrutinib (Imbruvica) is one of those ones where most people do really, really well, but there are still the rare few who have serious complications. And I think that, again, I would hate for someone not to do well because they were afraid to call. I think those nurse triage things are – so, what they always try to, and same with the ER – all emergency or urgent care do work on algorithms because they want to make sure it’s not something really bad and serious, so they are designed to screen that out. So, I think that it’s better than, again, not calling.

Andrew Schorr:         

So, Lynn, how have you – there you are in a rural area – and how old are you, Lynn? How old are you now?

Lynn Bailey:              

72.

Andrew Schorr:         

Okay, you’re a young 72, okay. So, but all of us as we get older and your grey hair gets greyer and your mustache gets bushier as we age, stuff happens. So how do you approach this in your own life? Like let’s say if like tonight something was bugging you, but you just weren’t sure what. How would you handle it?

Lynn Bailey:              

Well one of the things I do, Andrew, is I keep records. I keep records. I’ll keep a spreadsheet that I’ll – if I am running a low-grade fever, I’ll jot that down in a spreadsheet and track it over several days, if it’s like 99.1 or something. Last – a couple weeks ago where I ran a low-grade fever. I didn’t know if it was allergy or head cold or what, and so I kept track of that information just to see if it was – where it was going. And I found that to be beneficial for other things like side effects from taking medication to keep that list because sometimes drugs you repeat, and you have those same side effects again.

And the other thing is to be aware on the drug you are getting what those side effects are. And just last week I shared with my doctor about being on ibrutinib that there is some antibiotics that we have to be careful about giving me, just to give him a heads up because he doesn’t always have the latest information in his spreadsheet. The other things I have done is I’ve told my wife, I said honey, “I’m on a blood thinner and I’m on ibrutinib, and one of the side effects of ibrutinib is cerebral hematoma.” “If I fall and take a blow to the head don’t question it, just take me to the ER and have them do a CT to be sure I’m not bleeding internally.”

That’s where I kind of am at in those issues. Go ahead, Andrew.

Andrew Schorr:         

That’s great information. Eliot, how about you? So how to handle this where not knowing what could be next, what could come up in the middle of the night or anytime?

Eliot Finkelstein:       

I take it for whatever it may be, like my skin conditions, if I break out or have major muscle issues, either way because I’m in a rural town, my doctors are out of town, so I’ll just go to the ER. But I keep track and I do all my research, so I am up on what the side effects are of the medications and I’m always asking the different pharmacists, are there any interactions? Are there any contraindications of everything that I’m taking? And so far, thankfully, I haven’t had any issues with any of that. But I would run to the ER because of being in a small town.

Andrew Schorr:         

But when you do, you’re kind of briefing them.

Eliot Finkelstein:       

Yeah.

Andrew Schorr:         

...as soon as you walk in.

Eliot Finkelstein:       

In fact, that’s my list.

Andrew Schorr:         

Whoa. These are the drugs you are taking, the conditions you have...

Eliot Finkelstein:       

...and results.

Andrew Schorr:         

Okay.

Eliot Finkelstein:       

And it’s like 12 or 13 point.

Andrew Schorr:         

It’s kind of like they advertise – I wore one for a while one of those bracelets, but some of us would have – we’d need a bracelet that goes up and down our arm. So, Christina, how about you, okay, so how do you handle this? So, if tonight something was going on for you and you’ve already this, we had shortness of breath one time, you’re in that watch and wait situation. You don’t know how CLL is going to rear its head. How do you approach this?

Christina Weary:         

If I have shortness of breath?

Andrew Schorr:         

Or whatever. I mean it could be something else, muscle pain or whatever, where you say oh my God, who do I call or what – or how do I deal with it?

Christina Weary:        

Here I go again. That’s what it would be. I might start with my family doctor who I trust a great deal. Depending on what it is, if it’s shortness of breath, again, I think I would go to the Emergency Room. I don’t think I’d mess around with it this time.

Andrew Schorr:         

And fever?

Christina Weary:        

A fever, well I’ve had a lot of those actually. I’ve had a lot of infections and they kind of just run their course. I’ve been sick for months at a time and on a lot of antibiotics.

Andrew Schorr:         

That’s probably a discussion with your hematologist as to maybe when watch and wait ends.

Christina Weary:        

Yeah. I would probably go to my hematologist for the fever and the infection. Now it depends on what it is, I think. It depends on what the labs look like. It’s the ever-present CLL that hangs over your head that you never know.

Andrew Schorr:         

So, Sheila, what about that? So, it sounds like knowing, first of all, the side effect profile of the medicines you’re on is an important place to start. And both Lynn mentioned that Eliot I’m sure – I know Christina is taking medicines – knowing your labs is helpful as well. I mean that’s all of these things for us to be in the know is good, right?

Christina Weary:        

Yeah.

Andrew Schorr:         

And, Sheila, you’d agree with that too?

Sheila Hoff:               

I do, but I also kind of make is patient-centered in the sense that there are definitely people – I think all of us here are pretty information seekers, you know, want to know what’s going on – but there definitely are people who say, well I trust you guys to take care of it and you just tell me if I need to do anything. And so, I think there are definitely people – not that I’m one of them – but there are definitely people out there who really don’t want to know. So, as everything not one-size-fits-all. I think I always try and be cognizant of what patients want. If they don’t want to hear certain things, I mean I tell them what they should go to the ER for, but if they don’t want too much detail then I don’t really share as much with them.

Andrew Schorr:         

Okay, let me just recap a couple of things, and, Sheila, you tell us if we’re right. So first of all, if you're in active treatment, understand those medicines, and hopefully your nurse or doctor has coached you in what to look out for like a fever above this, heart palpitations, whatever, what to be on the lookout for that may be related to that medicine, right? And if we have multiple medicines or multiple conditions to kind of understand the effects. Eliot touched on – I think it was either Eliot or Lynn was talking about talking to the pharmacist about drug interactions...

Eliot Finkelstein:       

Yeah.

Andrew Schorr:         

...be wary of that, right, but not hesitate to take action, right? So, in other words, we’re not 21 years old and have never been sick right, so, Sheila, we have to pull the trigger a little sooner, right, Sheila?

Sheila Hoff:               

Yes, definitely.

Andrew Schorr:         

Okay, and so I’ve called, you see UC San Diego and ask to talk to the oncologist/hematologist on call and I said, “I’m feeling this, but I don’t know is it related to my condition.” Fortunately, it wasn’t, but I didn’t know, so I made the call. The switchboard got the doctor on call. It seems like, you referred to it, Sheila, usually seems to happen at night or on the weekends or on Christmas or New Year's or Thanksgiving or something like this. Lynn, do have any other advice you want to give our viewers?

Lynn Bailey:              

Yeah, let me add something in here that’s probably not something we all agree, but  I had a lymph node that came up under my chin after I had been on ibrutinib about a year or two, and as it would happen we were leaving on vacation the next day. I got a hold of my family doctor. I got an appointment in there. And he felt it and said, well maybe we ought to do a CAT scan, and of course, Now I’m going to end up – I said ultimately this has got to go to MD Anderson, and so I talked him into giving me an antibiotic. And I said let me go ahead and go on vacation give me an antibiotic in case it’s infection and then I’ll proceed with MD Anderson when we get back from our five-day vacation. Within 24 hours it was back – it was gone, so that’s a story with a positive ending, but it’s certainly something that, I’m sure Sheila has had phone calls like that, I’ve got a lymph node that I’m concerned about what do I need to do?

Andrew Schorr:         

Yeah, Sheila, it could be is it related to some other – something else or is it a lymph node fueled by CLL or SLL?

Sheila Hoff:               

Yeah it is. It’s always difficult especially things on a physical exam. Eliot can probably speak to that with his dermatology, but I can’t tell you how many times people have said I have this rash and so trying to describe it over the phone, rashes and derm things, you almost have to kind of like see. So, I often will suggest they go to their primary or their dermatologist. But, yeah, it is, I think there are definitely things that can be handled over the phone and that, again, the best-case scenario if we can figure it out and get it treated then that’s the best way to handle it.

Andrew Schorr:         

So, Christina brought up something that I wanted to ask her about. She said, well she’ll often call her primary care doctor, so hopefully you have a primary care doctor that you’ve gotten to know you over a long time, and you’ve maybe even educated them about, well I’ve got lupus and I’ve had a car accident, and I have orthopedic issues, you know the whole thing so that they can help you be an advisor in this too. Christina do you see your primary doctor that way?

Christina Weary:        

My primary care doctor is very, very smart, and she is someone that I should probably rely on a little bit more than I do to help me make some decisions and to help me decide what I need to do in perhaps nonurgent situations...

Andrew Schorr:         

...as a consultant.

Christina Weary:        

Yeah.

Andrew Schorr:         

Sheila, what about that? I mean so now we’re – so maybe we’ve had a visit with you and the hematologist or maybe we’ve seen other specialists, what I try to do, and I had my physical a week ago, I just went through it all. I kind of briefed my primary care doctor. And then he fortunately could go on the electronic medical records system and say, oh yeah, I see that. I see that. I see that. And he looked at the notes, so I kind of, I was almost coaching him at that point. But I mean what about our relationship with our primary care doctor as an advisor when we’re not sure, Sheila?

Sheila Hoff:               

I agree with Christina. It’s fortunate that she has a primary care doctor who knows her well and is familiar with – and again they’re all MDs by basic training and then have sub-specialized, so I think it’s great if you have somebody who – I’ve heard people refer to as their quarterback – somebody who's going to call the plays for them. And it can be a primary care doctor who’s willing to punt to somebody else if there’s a need to. So that would be the best, because usually – well in my experience – your primary care doctor often is easier to get a response from. Sometimes the sub-specialists are doing so many other things you don’t always get a call back in a timely manner. So, I think that’s great if you have non-urgent things, your primary care doctor is a great person to go to.

Andrew Schorr:         

Okay. I just want to give everybody a final comment here before we wrap up. So, first of all, Eliot, what do you want to say to our viewers, our CLL community out there, so that they just take action. And tips you want to give as we leave?

Eliot Finkelstein:       

Sure. The biggest thing is learn as much as you can. Do as much background research and carry around a list of your issues and have them in your wallet or your purse and that way you can give them to any doctor, and my wife knows I’ve got this, but anything happens she – and I can’t respond – she has the same list so it really helps if you have to go to urgent care or emergency care, and just be aware of your different things.

Andrew Schorr:         

And, Lynn, how about you?

Lynn Bailey:              

Yeah, I mean I’m in agreement with Eliot on that. Keeping a track record, a history of what’s going on if something has occurred after the last four, five days that is progressing, having that information to share with your doctor would be appreciated by him, and help him or her analyze what is going on. But I think the first inclination for some people when they are diagnosed with CLL is to bury their head in the sand. They think, this is it. I’m done for. But we are fortunate. There is so much positive that’s going on in the research and the drugs. I mean I started on ibrutinib two months after it was approved, so we are very fortunate to live in today’s world.

Andrew Schorr:         

Right. Amen. And so really it’s sort of managing, and we have these teams of doctors that we talked about earlier who are there to help us and people like Sheila Hoff who are so experienced who can help us figure it out, as well as if we have a well-informed primary care doctor. Christina, any final tips for you?

Christina Weary:        

I think you just brought up an excellent point when you addressed the issue of having multiple medical problems and how do you know where to go for which thing. That’s an excellent issue that you hit on.

Andrew Schorr:         

Okay. Well I just want to say looking at my friend, Sheila Hoff, who I’ve known for a long time, when I had a question – and given that I’ve been living with CLL a long time and never know when it’s rearing it’s heard or what’s going on and having that regular blood tests that they can look at – I’ll usually start with them, so I’ll start with Sheila. Obviously if I had something acute going on, and if I hadn’t already called the doctor on call or whoever if it’s a weird time, I would go to the ER or urgent care. It’s stuff not to play around with. And certainly, if I spike a fever though, I’m calling my hematologist because again, infections besides – bleeding issue we talked about heart issue we talked about, fever, we know what to do, right? I want to thank everybody for being with us. Eliot, it’s great to see you again even virtually.

Eliot Finkelstein:       

Likewise.

Andrew Schorr:         

So, all the best to you and good health. Lynn, a pleasure to see you in, where was it, Buffalo Gap, again, Texas?

Lynn Bailey:              

That’s right. We’re about 200 miles west of Dallas, Fort Worth.

Andrew Schorr:         

I’ve got to get there sometime and It will be around – I’ll be a cowboy I guess if I go there, right. I’ve got to get there. And Christina, all the best to you and thank you for your devotion to other patients in having started a support group in Upstate New York. Thank you for doing that.

Christina Weary:        

Well, I haven’t exactly started oner I’m just trying to help. There’s another woman who has devoted her time and I’m just trying to help a little bit.

Andrew Schorr:         

Well, any help is a good thing. And, Sheila Hoff, thanks for your dedication – almost 40 years, Sheila – thank you for your dedication to all of us and thousands and thousands of patients like me that you’ve helped. Thanks for being with us today.

Sheila Hoff:               

Thank you, Andrew, and thank you for this website and what you do. I’ve tried to share with people and directed them to this because I think this is really what our age of media is so important. And it tends to be younger people like my kids who do this, but I think anybody can get on the internet and benefit from the wonderful programs that you have on your website, so thank you.

Andrew Schorr:         

Well, thank you. We’re all in this together, a panel of patients, all of us living in now the CLL/SLL community and devoted providers like yourself. Thank you all for being with us. I’m Andrew Schorr. We’ve had people in Texas, in Arizona, in New York, in California all coming together to help you know who to call and how to handle this. Remember knowledge can be the best medicine of all. 

Please remember the opinions expressed on Patient Power are not necessarily the views of our sponsors, contributors, partners or Patient Power. Our discussions are not a substitute for seeking medical advice or care from your own doctor. That’s how you’ll get care that’s most appropriate for you.

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