Skip to Navigation Skip to Search Skip to Content
Search All Centers

Advice From CLL Patients and Care Partners

Read Transcript
View next

Published on April 15, 2020

Key Takeaways

Andrew and Esther Schorr, Co-Founders of Patient Power, sit down with John and Shari Howerton and Nate Ferguson to discuss their CLL journeys—from diagnosis and treatment to caring for and supporting each other through a challenging time in their lives.

In addition to sharing their personal stories, they offer sound advice for improving doctor-patient communication and how to care for yourself when you’re also caring for others. Watch now to learn from chronic lymphocytic leukemia (CLL) patients and care partners.

This program is sponsored by AbbVie, Inc., Genentech, Inc. and Adaptive Biotechnologies. These organizations have no editorial control. It is produced by Patient Power in partnership with Tennessee Oncology, Bag It and CLL Society.  Patient Power is solely responsible for program content. 

Featuring

Partners

CLL Society Tennessee Oncology

Transcript | Advice From CLL Patients and Care Partners

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.

Esther Schorr:
Hello, this is Esther Schorr. On March 28th, Andrew and I co-hosted a virtual town meeting. During that meeting, we were joined by a few wonderful CLL patients and a care partner. Let's listen in as they shared their journey of thriving and surviving CLL. At the same time, we'll also share some key tips for care partners to help support our families.

Andrew Schorr:
Now let's go to Daniels, West Virginia, and bring in John and Shari Howerton, and they'll join us now and there they are with…

Esther Schorr:
…hey, John and Shari.

Andrew Schorr:
And we'll unmute your audio so we can hear you. There you go. Just hit—there you go. Okay.

John Howerton:
Hey, you can hear us.

Andrew Schorr:
Welcome. And also, let's go to Elizabethtown, Kentucky, and have Nathan or Nate Ferguson join us, as well. And he'll unmute it. Hi Nate, thank you for joining us again.

Esther Schorr:
Hi, Nathan.

Nate Ferguson:
Hey.

Andrew Schorr:
Okay, so let's get everybody's story for a little bit. So first of all, we mentioned at the beginning, Shari your father had CLL?

Shari Howerton:
My dad, yes.

Andrew Schorr:
So you had heard about it before.

Shari Howerton:
He was diagnosed at age 60.

Andrew Schorr:
Wow. And he lived a long life, or...?

Shari Howerton:

Yes, he actually had Parkinson's disease. So he died—he lived 18 years with both CLL and Parkinson's, and he never had any symptoms of CLL. His issue was the other.

Andrew Schorr:
And, John, you were diagnosed with CLL, and how did it happen?

John Howerton:
Well, I actually went to my doctor because I wasn't feeling well, and he thought maybe I had something like low testosterone or something. So he did a CBC, and the first thing he noticed was my white count had risen up into, I think 31,000, and that was a concern. So he said, "Well, let's put you on an antibiotic for this. I think you have an underlying problem. But if that doesn't work, I want to check you again in about three weeks." Well, sure enough, I went back, and my white count had risen even a little more. So he was pretty in tune. He immediately thought that I had CLL. So he sent me to another specialist there in town.

Andrew Schorr:
And you went all over. I mean you went to the Mayo Clinic, but you ended up with Dr. Ian Flinn, who we'll see again shortly. And tell us about the medicines you've had along the way.

John Howerton:
Well, Shari could probably help with this. I started off in, as you know, Dr. Flinn. Shari had found Dr. Flinn, by the way, before we went to the Mayo Clinic to get a second opinion, which is very important to always get different opinions, I think, as one of your guests had mentioned. And we went into the watch and wait at first. I had my first doctor I went to wanted to do FCR immediately, which was obviously not the way to go. But Dr. Flinn, after Shari found and made an appointment, suggested we do a watch and wait. And the first thing I did—I had my disease proliferated mainly in my lymph nodes. They enlarged, very large, they got to a point where I could barely bend my neck, they were so large. So, was it rituximab (Rituxan)?

Shari Howerton:
We tried Rituxan first.

John Howerton:
Yeah, we tried Rituxan first, and then that…

Shari Howerton:
…bought us a little time.

John Howerton:
While I was doing that it did help some, but right after my last treatment, it wasn't long at all before they began to swell again. And then from that we went to…

Shari Howerton:
…we did FCR.

John Howerton:
Yeah, we did FCR after that, which gave me no relief. And then I went into, he suggested a clinical trial, which I know you've spoken a lot about clinical trials, which I would always recommend a clinical trial for various reasons that you've already discussed, and I won't belabor those, but that was really a lifesaving event for me. And Dr. Flinn, I think the first one I went into was, what was it originally called?

Shari Howerton:
It was CAL-101.

John Howerton:
CAL-101.

Andrew Schorr:
Which became known as idelalisib (Zydelig), it is used in some patients, but these other drugs are used more often.

John Howerton:
Right, exactly. That was the first, and it did well for me for about five years. And then it started failing me, and I had to go off of that. And then we went into, was it...?

Shari Howerton:
We did the venetoclax (Venclexta) and obinutuzumab (Gazyva).

John Howerton:
But now the venetoclax, I was on it for a couple of years by itself, and then added the…

Shari Howerton:
…ibrutinib (Imbruvica).

John Howerton:
Ibrutinib, yeah. Which I'm on presently. Those two drugs, and they do very well.

Andrew Schorr:
You're basically on a combination therapy right now.

John Howerton:
Yes.

Andrew Schorr:
You're in one combination, one monoclonal antibody, Gazyva or obinutuzumab, with venetoclax or Venclexta. That worked, and then now you're sort of in this new age of other combinations.

John Howerton:
Yes, exactly.

Andrew Schorr:
So then, Nate, let's just get your clinical situation. You're a nurse. First of all, I understand in a way you almost like self-diagnosed yourself, right? Tell us about that blood test you had done.

Nate Ferguson:
Mine started a little bit differently, so I was living in Florida, and my wife had got a job in Kentucky, so we were prepping to move. During the move, it just wore me out, the physical portion of it. So I knew at the end of once we got moved, I was going to see my PCM. So I got established in a new area, I went in to see them due to the fatigue. The other thing that has been going on is about seven months prior to this, I'd start started developing hives. I was working in an ER at the time, so I did the standard diphenhydramine (Benadryl) and famotidine (Pepcid) helps with that, too. And it started off kind of light, and by the end I was getting it almost daily. I had to carry Benadryl with me all the time. I was taking it daily, and they had progressed to like alligator skin.

It wasn't a light case of hives, by any means. So I went into see my PCM mainly about the hives and the fatigue, hoping to get an allergy referral, which I did. And I also had a light breathing issue, which I thought was this along with the hives was going along with the allergic reaction. So we talked about X-ray versus CT and I got them to put in for a CT of my chest. So I went in and had that done. The results came back, nothing really going on with my lungs, but they noticed that my spleen was slightly enlarged, which I immediately was concerned about, so he wasn't overly concerned, it was a preliminary one. So it wasn't done with IV dye.

The radiologist suggested doing it with IV dye. So I immediately called and scheduled that. It was about five, six days later, and the PCMs, it was like, "Yeah, get the IV dye CT done, and then I'll follow up with you in a week." And I was like, "Okay, so do you want to do any lab work?" And he was like, "Well no, let's see what the CT shows". So I was waiting for that, and they called me a couple of days before the CT scan and said, "Oh, we need to do a CHEM-7 on you to check your creatinine, because we have to give you this IV dye." So I'm like, "Okay, well can you add a CBC to it?"

Andrew Schorr:
Complete blood count.

Nate Ferguson:
So I went in that morning, had my labs drawn. I went and had the CT done. And at the end of the CT, I asked the radiology tech, "Hey, can you pull up my labs really quick?" And he said, "No problem." So they pulled it up and my white count, I think it was like 78,000 so I knew something was...

Andrew Schorr:
…not normal. That's not normal, not normal.

Nate Ferguson:
So I think it was summer, so my kids were with me. So I started heading down to the primary care to deal with this issue, and they stopped me like, "Hey, they need to see you down in primary care." I was like, "Yeah, I'm heading down there now." So by the time I'd got down there, they had already fast-tracked me an appointment that day to see a local oncologist.

Andrew Schorr:
And as far as the treatment goes, Nate, just to catch up on that, so you are on, you've been on venetoclax, and you achieved MRD-negative status. And now you're in a trial, you're not sure whether you're getting ibrutinib or not, and you're no longer on the venetoclax, that's been stopped, is that right?

Nate Ferguson:
Yes. I started ibrutinib only for I believe, three months, at that time my white count had gone up to I believe about 170,000. So they put me on the venetoclax or sorry, the ibrutinib, that got it down I believe into about the 40,000 by the time I started venetoclax. And the venetoclax quickly dropped it at least for about 10 or 11 months.

Andrew Schorr:
How are you doing now?

Nate Ferguson:
I'm doing good. I had some minor side effects. I do have a little bit of joint pain, but I was in the military for 20 years too. A little bit of bruising, that's probably the main thing.

Andrew Schorr:
So these are the founders of the CLL Society.

Esther Schorr:
Right, right. Which is just a wonderful organization that we're well aware of, and Dr. Brian Koffman is just such a fountain of information and support to everybody. I think it's great. We spent the first part of the program really digging into a lot of the clinical side and the medical side of what CLL is and the medications and treatments, but we wanted to spend a couple of minutes just talking with the three of you about just coping as CLL patients and a care partner. So maybe start with Shari and John. So we're in a very unusual situation now with the virus situation. In this current situation, how are you and your family coping? I mean there's the basic coping around CLL in the family, but what's happening with you guys on a daily basis now?

John Howerton:
In a word, hibernation.

Esther Schorr:
That's the word.

John Howerton:
Yeah. That's where that came from. Of course, I own a business, and I'm very blessed to be able to stay home. My wife is a great advocate. The reason I'm sitting here is because my wife's sitting next to me, but I have the ability to stay home, and that's basically what we've done.

Shari Howerton:
I'm very proud of him for making that decision. I was concerned at the beginning of this when a lot of people were not taking it as seriously as I knew they should be. And he leans toward business first, and I'm the one always saying, “No, your health first.” And so we talked about it a lot. I provided him with a lot of information that I was gathering and convinced him he didn't need to go to the dealership. He needed to rely on his team and do what he could do from home, and he complied.

Esther Schorr:
So virus or not, it sounds like as a care partner, your big role has been in all of this, Shari, to do the research and connect the two of you with the right team. So who is on your team now? Who's the circle of trust in, other than Shari, John, that's helping you out and supporting you?

John Howerton:
In terms of...?

Esther Schorr:
Everything. Medical, family. How are you?

John Howerton:
Really blessed, mostly medical. Of course, Dr. Ian Flinn, who you have on, and his staff, I've been with Dr. Flinn since April of 2007.

Shari Howerton:
August.

John Howerton:
August?

Shari Howerton:
Yeah.

John Howerton:
Oh. August of 2007. I'm sorry. That's true. I was diagnosed in April of 2007. All of my family's in Indiana, and Shari's is in Tennessee, so we don't have a lot of interaction with them, just on the phone, but pretty much Shari is my support, and my doctors.

Esther Schorr:
Yay, Shari!

John Howerton:
Yeah. And yay for Dr. Flinn and his staff, as well.

Andrew Schorr:
We shouldn't overlook that you mentioned at the outset that each of you've had family members or have family members with CLL. So what's the discussion in the family about CLL? It sounds like, John, your treatment is pretty well wired now. What about your brother? What's happening with people?

John Howerton:
My brother's one of those that likes to, so to speak, stick his head in the sand. He's very private, and I'm not really sure where he is. Of course, we've given him some coaching, and Shari's talked to him a few times, but he doesn't like to talk. He's at that point where he doesn't like to talk about it a lot, which is not a good thing, obviously. So my mother is, well Shari knows better than I, she's kept up with my—she's been my mother's caregiver as well for all these years. Yeah.

Shari Howerton:
We synchronize their appointments, and I go in the exam room with John, and then I leave and go to the exam room with Marian.

Esther Schorr:
That sounds like a full-time job.

Shari Howerton:
His mom is 87, she's done really well. She was diagnosed in January of 2008, and she recently had a transformation to Hodgkin's lymphoma. But she received treatment for that, and at 87 she's in remission again, and she's feeling good, and we talk frequently on the phone, and she's also being very careful to stay in.

Esther Schorr:
Great.

Shari Howerton:
Some of his other family, they're a little bit more denial-based, and they don't, they want to kind of dismiss this. But I've had some very firm conversations with her that whether the rest of the family is taking it seriously or not, she needs to take it very seriously. And she seems to be complying.

Esther Schorr:
Well, and you're making a very good point about the difficult role of care partners in all of this. There's the old adage, “You can lead a horse…”—which I'm not referring to you as a horse, John—"You can lead a horse to water, but you can't always make them drink.” And everybody makes a personal decision about how public they are about what's going on health-wise. But certainly having somebody like you, Shari, or somebody else who's a real activist in the health of people that they love is really an important role.

I wanted to ask you, Nate, about what's going on for you in this current situation as far as your family, and how you're dealing, not only with your CLL, but in the current situation with the virus, is it much different, or what are the kinds of things that your family is doing?

Nate Ferguson:
Well, my kids are out of school. I have two school-aged children, so sort of a mix, and my wife's working from home. I'm working from home as much as I can. I still have to go in occasionally, but I'm fortunate that I'm in my own little office, so I don't have that much interaction with others. But I am trying to keep my social distance from everybody and do all the other things associated with it.

Esther Schorr:
I'm just curious, you said you have school-aged children, and I'm guessing there are probably some people in our audience that are listening that may have young children, as well. You have sort of a double whammy right now that you're living with a chronic illness, and there's this overlay of general fear that there's something very strange going on. How have you been dealing with talking to your children about what's going on in either front or both?

Nate Ferguson:
I have one that's in 3rd grade.

Esther Schorr:
Oh, very young.

Nate Ferguson:
So she's not really doing a lot with her friends. I have allowed my older daughter who is in the 8th grade to see a couple of her friends, just because there's such a push for more interaction with her friends, and she has gone out a couple of times in a very small group and went to the park to walk around, that type of thing. I pretty much try to limit going to the grocery store and the bigger places where I'll be closer to people.

Esther Schorr:
Right, right. Andrew, you have a question, it looks like.

Andrew Schorr:
I do. For Nate. So, Nate, you're a healthcare professional. So, Nate, how do you look at CLL? And you're younger than some other patients. And I was diagnosed at 45, too, so how do you think about the future with CLL?

Nate Ferguson:
My biggest concern is my age at diagnosis. When I talked to people that are diagnosed older, I just feel with all the advancements that they've made that my worries are not the worries of someone who's diagnosed at 78. I think the new therapies are going to get them to a point where their concerns are going to be more on other problems, other healthcare problems. Even with, I'd be lying to say, I wouldn't be concerned that even with all the new therapies, to make it to 80 I have 30, 35 years that I have to deal with this. I'm otherwise healthy, so I do have that going for me. I was not on any other medications prior to this, which was one of the reasons I pushed going in to see the doc, because I just, I got a little tired, I'm getting some hives, I can deal with all that stuff. So this completely blindsided me. So I went from never going to the doctor to this diagnosis where I've been poked and prodded all the time now for five years.

Esther Schorr:
So, Nate, I understand that you have a support group that you were one of the founders, is that right?

Andrew Schorr:
In Nashville.

Esther Schorr:
Yeah, a Nashville support group. So in the current situation, have you gone virtual? Is that support group, has it made a transition, and if so, how is that working?

Nate Ferguson:
Yeah, CLL Society is in the process of setting that up right now. They're asking when we want to start our next meetings in the process.

Esther Schorr:
Yeah. I think that having these ways of virtually interacting for everybody out there is a great thing, but I know Andrew and I have specifically found that connecting with family and figuring out the technology of using things like Zoom, and FaceTime to maintain regular support, but also interacting with other patients and care partners has been an important thing. So it's good to hear that the CLL Society is moving in that direction, as well. So I think it would be really good to see if the three of you can share a little bit about what advice you might give to other patients and care partners who are new to CLL. We probably have some of the patients that are on the program now and listening who have been on their journey for a while, but we often have people who are just starting out, and you're all at different places in different roles in this. So maybe start with you, John. What would you tell newly diagnosed patients?

John Howerton:
Well, I would certainly tell them to seek out a specialist. There are a lot of good doctors, but when a doctor is a general oncologist and has to deal with so many different things, it's virtually impossible for them to stay up with the latest and greatest. So Shari and I learned through my journey that being, and of course I was very fortunate to be living in Nashville, and being able to go to Dr. Flinn, who's one of the foremost specialists and authorities in CLL probably in the world.

Shari Howerton:
Who we continue to travel to see regularly.

John Howerton:
Yeah. We live in West Virginia, but we…

Shari Howerton:
…that was one of the conditions of us coming here. You're not leaving Dr. Flinn, or we're not going.

John Howerton:
So we go back and forth. Some of it may sound kind of cliché, but overall health is very important, too. Pay attention to your general health, stay in good shape, eat right, do things like that. Because that—a lot of people don't realize how much that when you have something like CLL or any type of underlying medical issue, taking care of yourself in other ways that you can, that are within your control are very, very important.

Esther Schorr:
What kinds of things do you do?

John Howerton:
Well, I run, I've kept working out when I could. I've gone through periods where I've had very bad fatigue, and it can vary. But I just keep driving myself. I think you can't sit down and let it get a hold of you, so to speak. But I eat pretty well, and I don't smoke. I don't have any bad habits. I don't drink, and smoke, and do drugs, and all that.

Esther Schorr:
Good for you.

Andrew Schorr:
John, I have a basic question for you. You're taking pills. So how do you remember to take your pills? Because if you don't take them, they don't do any good.

John Howerton:
Well, it's just routine, really. I'm a creature of habit, anyway. And I take three pills in the morning, and I take them about the same time every morning. And I keep them in a little pill box, so I know to look for them, but I keep them right in the same place, and it's just kind of a routine. Knowing that if I don't take them, things can happen that I don't want to happen.

Andrew Schorr:
Right. Nate, how about you? While we're talking about that, how do you remember, because some people forget, or they're feeling well, and they say, “Ah, maybe I don't need to take it. Or I know these medicines are expensive, I'll stretch it out.” What do you do, Nate?

Nate Ferguson:
I also have mine in a pill box so that I know, I guarantee I know that I'm not double-dosing. I usually take mine with dinner, so I have my pill box right where I eat and sit.

Andrew Schorr:
Okay. All right. And, Shari, let's talk about from the care partner perspective, and I have to say, folks, without Esther, I couldn't do this. So, for example, we talked about immunoglobulin infusions, which I've been getting now for two years. Esther had me call, I had a nice chat with my nurse yesterday about whether I should come this month. In my case, I am. And I get a blood test at the same time, at the small clinic, not the big hospital.

Esther Schorr:
But I'm going to be barred from going this time, because I don't want to take any chances of—it looks like I'm okay right now, but they're going to take good care of Andrew. But I normally go with him every time, and we work together, and we do live broadcasts, but to be careful.

Andrew Schorr:
So, Shari, what about you? What do you, first of all, you and Nate founded the local chapter of the support group there. And so you have a lot of feelings about talking to patients and the family members. What do you want to say now to help people, whether newly diagnosed or like you've had with John, another shoe drops, that remission is ended, we need to do something else?

Shari Howerton:
Well, we've been on the path for quite a while now, so I've gone the gamut of, I've been very resilient, and there have been times I've been emotionally rocked. At diagnosis, I was definitely emotionally rocked, and I just threw myself into research and learning everything I could possibly learn about CLL, because I knew that was not John's personality. And I'm sure everyone feels this way who's concerned about their spouse or their family member, but I felt very helpless, and I had to find a role. I had to find some way that I could help him. And so the only thing I could figure out is I can be his advocate. I can do the learning for him, I can help him make informed decisions, not make the decisions for him. He is the patient, they are all his decisions. But I can help inform him to where he can make the right decision, because he's got more knowledge.

Esther Schorr:
Knowledge is power, right?

Shari Howerton:
Yeah. And at the onset I wasn't working, so I had the luxury of time, and I just immersed myself. I mean, I would spend all day long every day learning about CLL, making personal contact with other patients in online forums. That's how I learned right away the importance of a specialist. I learned right away that there was no urgency to receive treatment, that we had time to think about it and explore options and not be rushed into anything. And so I shared a lot of that with John. What that did for me is it made me feel like at least I could do that to help. It gave me a role. It made me feel useful, anything I could do to keep him healthy and give him longevity, that's what I wanted to do.

And it was a whole lot better. I had some people warn me, don't read anything on the Internet. It will just upset you. And that's not my personality. My response would be, "Oh, so I'm supposed to protect myself from being upset at the cost of my husband being uninformed. No. You have to face this."

Esther Schorr:
Well, after it was all said and done, Shari, which, it sounds like you looked at everything. were there some key resources that you found that you might want to share with people who are listening in that were most helpful to you? And then to John in sorting things out? Obviously you found Dr. Flinn, that's a wonderful thing. Were there other things, other places and other resources that you used to try to begin to be empowered and make decisions?

Shari Howerton:
Well, at that time I was reading CLL forum, CLL topics. I joined CLL Christian Friends. So I made a lot of online friends who were further down the road and had valuable information to share as a patient with me. And so there was actually someone on both of those forums who told me, you have a specialist right there in Nashville. Do you realize? Because I was saying we're going to the Mayo Clinic to be evaluated, I knew he didn't need to necessarily just go with just a hematologist or oncologist, but I was not aware at that point that Dr. Flinn was right there in Nashville. It was shortly after, I think Dr. Flinn had come to Nashville from Johns Hopkins, so this online contact actually told me, you don't even have to go to Mayo, you have Dr. Flinn. And so we had already made that appointment and I told John, “I don't think we have to go.” And I got an appointment.

I called and made an appointment, got an August appointment, but we had already made an appointment with the Mayo Clinic for July. And so John said, "Well, I'll just go ahead and go since we have the appointment, I'll get thoroughly evaluated, get testing done, and then we will go see Dr. Flinn in August.” At the point that we met and consulted with Dr. Flinn, there was no doubt in either of our minds. Dr. Flinn was going to be our doctor.

Andrew Schorr:
Right. That's what I was just going to make a couple of comments. First, have a team that you trust. So Nate and Shari and John found a specialist who's knowledgeable, who does clinical trials. The whole enchilada with a team, Camille and others there at Tennessee Oncology and related to infection and all that. Dr. Hester comes into play, a big team that's very focused on you.

Esther Schorr:
And actually, that team doesn't have to all be local, right, Andrew? I mean we had your local oncologist, and then it was the opposite, Shari and John, where we found Dr. Keating, who was at MD Anderson, we were in Seattle, and there was a marriage between those two teams to try to deliver the clinical trial that Andrew was in. So, it can be a team that's virtual, as well.

John Howerton:
May I say something? I'd like to say something.

Andrew Schorr:
Please, go ahead, John.

Esther Schorr:
Sure.

John Howerton:
One thing that Shari drove home with me, and it's very important for everybody to know, is don't ever make this a matter of convenience. In other words, just don't go to somebody just because they're close, so you don't want to have to drive. Because that can be very dangerous.

Andrew Schorr:
Right. You need all your options. And so, Dr. Flinn, my doctor, Dr. Kipps, there are a number of wonderful CLL specialists around the world.

John Howerton:
Absolutely.

Andrew Schorr:
Have them weigh in on your case. There may be a bridge with your local hematologist, but have them be an architect for a treatment plan, and have that treatment plan include up-to-date testing, like we're talking about MRD testing, how's it going? What's your story? FISH testing he mentioned along the way, what's your personal situation? What drugs line up with that? Is there a clinical trial that makes sense? And then as you're on your journey, you have that go-to team that is on top of things.

Esther Schorr:
Well, Andrew, I know we've heard the recurrent theme that cancer is a team sport. You really do, it takes a village, it takes a team, and you shouldn't ever try to handle it all yourself. Because it takes your family, or your loved ones around you and friends as well as your medical team, as well as your care partners and loved ones to put the whole pieces together.

Andrew Schorr:
Nate, resources that you've used, Nate, you seem to be a pretty practical guy, so you've got a great doctor now and a great team. Any other points you wanted to make or that you do with your CLL Society discussions?

Nate Ferguson:
I would echo their points as well, but I'll also add, and this got brought up earlier with the docs, that my initial hematologist was just local, very broad range. I was diagnosed on a Thursday, and the next day I was getting a bone marrow biopsy. Even though it probably wasn't indicated at that time. At that appointment I was told that I got a prescription to go get a port placed, and was told that I'd probably be getting chemo in the next three months, and that the preference was doing BR and which at that point I was a candidate for FCR, definitely, BR shouldn't really have been brought up. As you said, knowledge is power. I started getting educated on everything and after I think two-and-a-half weeks I left that doctor, and I've never been back.

Not that there are not a good doctors in other areas, it just for treatment-wise they were behind the times. I got a second opinion locally in Louisville. That doctor was like, "No, we need to get a couple months’ worth of lab work, and then we'll worry about treatment options when the time comes." And as I got more and more knowledge, I found out about Dr. Flinn, and again I drove. I drive about two hours and 15 minutes to two-and-a-half hours depending on traffic to see Dr. Flinn. And I'd drive farther if I needed to, because I know I'm going to get the best care there, and the best care equals the best, better outcomes.

Andrew Schorr:
Right. And one of the things that Dr. Flinn alluded to, I think Dr. Hester did, too, earlier, is now there are rules that are being relaxed, particularly as we have this virus discussion related to what we call telemedicine, where the doctors and the nurses are available to you increasingly like this, or over the phone for these check-in kind of things. So you may have a blood test locally in Elizabethtown, and then that data will go to Camille and Dr. Flinn. If there's something to talk about or for them to check in with you, right, Nate?

Nate Ferguson:
My next appointment is about three or four weeks, I have not heard. I probably do need to call them and see what they want to do. I don't know if I have to go down there, I'm in the drug trial, so I have to get my medications through them. So I'm not sure if there are options now to mail them.

Andrew Schorr:
Some of them are changing. Yeah, we'll talk about that in the Q&A period. Esther, so just, we ought to share our story just a little bit. How have you coped? Me living 24 years with CLL? How do you keep it in the road? You can tell me and tell them.

Esther Schorr:
Well, I have to say I don't always keep it in the road, so I have to admit that from the very beginning. I think you shared this, Shari, at the beginning I pretty well de-compensated. At the time, we had two very, very young children, and we were honestly, we were trying to have a third child at that point. And once we connected with Andrew's local oncologist and then through some of the same process that you and John went through, we did find a specialist at MD Anderson, and the team there that Andrew went on to watch and wait. But to be honest, at the very beginning, I'm a high anxiety person, and I needed some counseling, and I needed some medication to get myself grounded. And since then, the way that I cope is knowledge. Is doing the work that Andrew and I do and connecting with other patients, connecting with other care partners.

And I do yoga. I exercise every day. I attempt to get enough sleep, but it's a job to be a care partner. I feel very blessed that I have a care partner who is also incredibly educated and an advocate for himself with a positive attitude. But if I were going to say anything to other caregivers out there, it's that it's really quite normal to feel anxious and feel overwhelmed, and to reach out for the help that you need in order to be strong and to support the person who's actually going on the disease journey, because you're really in it together.

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.

Recommended for You

View next