Living With CLL: Christina’s Diagnosis Story

Living With CLL: Christina’s Diagnosis Story from Patient Empowerment Network on Vimeo.

After chasing a diagnosis for almost a year, Christina Fisher shares how she was finally diagnosed and how she lives well with CLL.


Transcript:

Andrew Schorr:

Andrew Schorr with Patient Power here with Christina Fisher from near Portland, Oregon, diagnosed in 2013 in an odd way with a consultation with an ENT specialist who did a biopsy basically or an excision of your swollen lymph node, and then it turned out to be CLL.  Shocker, right?

 

Christina Fisher:

Yes.

 

Andrew Schorr:

Okay.  And so that had you go on a journey to different oncologists and ultimately CLL specialist, and so you’re doing well now with some of the latest medicines, in your case venetoclax, Venclexta, with Rituxan and delivered with Rituxan (?) high cell as kind of a quick infusion.  How are you doing?  Are you doing well?

 

Christina Fisher:

I’m doing well.  It’s been a little bit bumpy over the holidays for the last four months or so, but I’m emerging, feeling well.  Thank you.

 

Andrew Schorr:

Okay.  But it was also bumpy in getting to a diagnosis, getting to the right specialist, right? and knowledgeable team, so what is the lesson for people to be their own advocate?

 

Christina Fisher:

Be dogged in your determination.  Do not give up.  Be your own advocate.  Do your research.  Have your questions ready ahead of time.  Just don’t give up.  I had so many obstacles trying to arrive at a diagnosis, and the frustration was insurmountable, but I didn’t give up.  I knew something was wrong.

 

Andrew Schorr:

Being in your mid‑40s and having weird symptoms when CLL is often a disease of people older, your doctors were saying, oh, you’re fine.  I mean, the idea of leukemia never came up early on, right?

 

Christina Fisher:

My primary care physician was flip about it and had actually made several comments such as you are way too fit to have cancer, your blood isn’t displaying anything in particular, almost to the point where he made me feel like a hypochondriac.  But I had a large lymph node swollen over my collar bone that would not recede, and I went through a year of asking him for a biopsy, asking him for further tests, to the point of tears in frustration, and I received no answers.

 

Andrew Schorr:

And it was ENT specialist, a different doctor, who finally said, let’s take a look at that lymph node.  That’s what led to the pathology report, and that’s when‑‑you got a call a couple of days later.  Tell us about that.

 

Christina Fisher:

Well, initially my eyes had swelled shut.  I went to an ophthalmologist who was roommates with the ENT, and it turned out that their other roommate had removed my swollen gallbladder as well.  They started talking about me.  And so they sent me to the ENT, and she was extremely efficient and tuned in, and she saw the lymph node over my collar bone, and she had done other things that ENTs do during the exam but ultimately stated that something else is wrong with you.  Do you have a moment?  Let’s step into the surgery room and we’re going to extract a lymph node right now.

 

So that caught me off guard, but I was game.  And she removed a small lymph node from my neck and said it will be about a week to do the pathology, but, yes, called me in two days.

 

Andrew Schorr:

And said, what do you think you have?

 

Christina Fisher:

She said, what do you think you have?  And I‑‑she said, you know you’re sick.  What do you think you have?  And I said, I think I have leukemia or a form of it.  And she said, you’re right.  Would you like to sit down and talk about it?  So it was kind of hard to hang onto the phone at that moment, but I wanted to know what kind it was.

 

Andrew Schorr:

Now, Christina, you found your way to a CLL researcher.

 

Christina Fisher:

I did.

 

Andrew Schorr:

Specialist.  So what is your advice to people when we know there’s this whole changing world of treatments and combination therapies and clinical trials.  You’ve been in some clinical trials.  What would you say to patients about at least getting a consultation with a CLL specialist?

 

Christina Fisher:

You must.  You must seek out a consultation with a specialist.  It is up to you as a patient to seek one out and obtain that appointment.  No one is going to come to you and say, hey, maybe you should make an appointment or I’m going to give you a referral.  You need to make that appointment and see a specialist that you’re comfortable with.  And if your personality or maybe the information doesn’t quite deliver in a manner that you prefer, find another one.  There are many in the country now for CLL, and I was fortunate enough to be accepted into a program at OHSU where‑‑

 

Andrew Schorr:

Oregon Health & Science University.

 

Christina Fisher:

Yes.

 

Andrew Schorr:

Okay.  So you’ve gone from having your eyes swollen and shut and a big lymph node on the side of your neck, and at one point I think even being weak and being in a wheelchair to doing well.

 

Christina Fisher:

Yes.

 

Andrew Schorr:

So what’s your outlook for the future?

 

Christina Fisher:

Well, I feel like I’ve been released from a cage recently, and that’s something that I’m considering, and so my husband says he knows I’m doing better when I nag more, and, believe me, I’ve been nagging.  So I’m feeling so much better just recently, and I feel like that I have hope for life.  I have hope for a future.  I have hope that there’s just a chronic condition or a cure.  I feel fantastic right now, and so I’m looking forward to a very active summer, definitely.

 

Andrew Schorr:

Good for you.  Christina Fisher, wish you the best, continued better health, and I’m glad you have the right team working with you now, and thanks for speaking up and telling others to speak up.

 

Christina Fisher:

Thank you, Andrew.

 

Andrew Schorr:

Okay.  Andrew Schorr, and you can see personal advocacy and knowledge can be the best medicine of all.

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.

CLL Patient Cafe® – March 2019

Managing Side Effects and Symptoms

A group of CLL patients and a care partner discuss living with CLL and how to manage its symptoms and side effects.

For more CLL Patient Cafe® and other programs, please visit here.


Transcript:

Andrew:

Hello, and welcome to this Patient Empowerment Network program. I’m Andrew Schorr, with Patient Power, and I want to thank you for joining us for another one of our CLL patient programs, and today, we’re gonna go from the United Kingdom, England, all the way to California with a group of people as we discuss living with CLL, dealing with symptoms and side effects. Emotional issues, how we communicate with our healthcare teams. I’ve been living with CLL about 23 years now, and also joining me here in California is Esther Schorr, care partner of course. Esther, thank you for being with us.

Esther:

No problem.

Andrew:

And along the way we’re going to include, obviously, the role of someone who advocates for you, and urge you to have someone to do that. Let’s go all the way over to England. We have Adrian Warnock with us. Adrian, you’ve been living with CLL how long?

Adrian:

Well, next month or so it’ll be two years, actually.

Andrew:

Wow, okay, and you’re a physician by training, so when all this medical stuff comes up, you’re evaluating it based on your training probably as well, although I know you haven’t been a CLL specialist.

Adrian:

Yes, that makes it quite an interesting thing, because when you look at the terminology, you have clinical trials. I’ve actually helped them run a lot of clinical trials, but not in hematology, in a completely different disease area. So, there’s some things that are very sort of familiar, and other things are less so.

Andrew:

Right. And we should mention that you’ve had a number of hospitalizations. You’ve had Treatment with FCR, fludarabine, cyclophosphamide, Rituximab, or Rituxan, that many people have had. I’ve had that, too. And right now, you’re doing okay. 

Adrian:

Yeah, I hope so. I mean, it’s early days yet. My last FCR was just a couple of weeks ago. But what I would say is my lymphocyte count is less than one at the moment, so if that continues to be the case, then hopefully we’ll conclude it was a good outcome.

Andrew:

Okay, well we’ll talk more about your journey. Let’s go over to New York. There’s Jay Blatt.

Jay:

Hi, everyone.

Andrew:

And Jay, you were diagnosed when?

Jay:

January of 2016.

Andrew:

Okay, and what led to that diagnosis?

Jay:

What led to the diagnosis was seven years of my platelets diminishing consistently, and also having two bouts of a bronchitis that I couldn’t shake, and then finally, in November of 2015, while fishing on a jetty in the middle of nowhere, I bent down and a blood clot developed in my thing. And at that point, as thick as I am, I knew something was wrong.

Andrew:

Okay, and you’ve had no formal treatment, but you’ve been on a special diet that you believe has helped you.

Jay:

Yes, but not exactly. I’ve been on a macrobiotic protocol that includes diet, nurturing the food a certain way, and exercise, and I develop my own type of CLL wellness program, using macrobiotics as a foundation. And it’s a very blood-centric dynamic, where I believe all good health comes from having healthy blood.

Andrew:

Okay, well, we all want to know what we can do ourselves, and that’s gonna vary by person. I’ll talk about mine as well. And joining us from Southern California, someone who goes to the same clinic at University of California, San Diego, that I do, is Maggie Buckenmayor. Maggie, you are still in the watch and wait phase. When were you diagnosed? 

Maggie:

I was diagnosed on November first, 2018, and my diagnosis happened from just a routine annual blood check. And they noticed that my lymphocyte counts were high.

Andrew:

Okay, and when you were told, maybe even as an offhand remark, that it could be leukemia, that was a heavy blow for you, wasn’t it?

Maggie:

Oh, it was extremely tough. My husband and I were actually travelling, and I got a call from my intern, and she started to talk about my blood results, and said, “Oh, you have some strange blood results. It may just be an infection, or it may be, you may have cancer, and it may be leukemia,” just right there on the phone. And I’ve never felt better. I exercise a lot. I eat a healthy diet.

I’m just in a very, very positive place in my life, and that hit me like a ton of bricks, because I never ever imagined that I would have leukemia, and when you hear the leukemia word, it’s pretty tough. It was pretty tough for me to wrap my head around. So, I went into kind of a tailspin there for a while.

Andrew:

My understanding is you met up with your twin sister, and you were wondering whether you were gonna tell anybody, and then it just came out.

Maggie:

Yeah, and actually, it was during that trip, and I told my husband, “I’m not gonna tell anyone. This is just between you and me. Let’s do more tests, find out exactly what’s going on.” Because at that point, they didn’t know if it was leukemia or lymphoma or what was happening. And I saw my twin sister, who I’m extremely close to, and just one look at her, I burst out crying and I went running up to her and I said, I get upset still, but I said, “I’ve got blood cancer.”

 And she just gave me the biggest hug and, luckily, she’s a therapist, and she was great. And I can’t thank enough my family and my support system. And today I’ve learned a lot more about the disease. I’m, like you said, at UCSD Moores Cancer Center. I have a fabulous doctor there. And a lot of that has been my anxiety and tension has really calmed down, and I feel like I’m on a great path. I feel healthy, I feel great, and when it comes to time that I need treatment, I’ve got a really good, positive headset now. But that first month was awfully really bad.

Andrew:

I understand. Now Adrian, you had not just issues with being told you had cancer, but you had hospitalizations that came with this, too.

Adrian:

Yeah, so what happened with me, actually, when I got phoned up as well, I mean, that’s interesting that you should have a phone call. I don’t think anyone should hear news like this over the phone. But I got a phone call, I was actually lying in a hospital bed, with pneumonia, basically unable to walk, unable to breathe, and my head wasn’t working properly, I couldn’t really think straight. And it was the doctor from the first hospital that I had gone to in A&E a couple of days before, saying, “Hey, I’ve looked at your blood under the microscope, and,” like with you, she said, “I’m pretty sure you’ve got leukemia. I need to see you urgently.”

And I said, “Well, I’m in hospital, actually.” So yeah, I was dealing a sort of quite nasty pneumonia that took weeks to get on top of, whilst dealing with a three-quarters diagnosis. And honestly, I don’t know if doctors ever watch these, but really, they should learn a lot better than to tell people over the phone. It’s not very fun.

Andrew:

Right, and you’ve had a number of hospitalizations, but you’re doing well now.

Adrian:

Yeah, that’s right. Unusually, I had surgery. I had two operations on my tonsils, which can happen with people with CLL, but perhaps it’s a bit atypical. Mine was trying to choke me to death. I was losing my airways at one point.

But since I’ve had the FCR, my lymphocyte count is way down now. It’s well below one. Obviously, it was only a couple of weeks ago that I had the last one. But I’m back in watch and wait and worry, really. I’m very aware that particularly that first three months after the FCR will probably help to indicate whether it’s taken or not.

Andrew:

And Jay, so you’ve managed your CLL with your diet and it’s worked for you. So, when you say macrobiotic diet, what does that mean?

Jay:

Okay, well it means, just like doctors have a different philosophy and they’re still doctors, doing the same type of thing. Macrobiotics can mean a lot of different things, but my point of view is about lowering the impact of your CLL, because I’m doing this because of CLL, and being able to live as healthy a life as you can.

But macrobiotics is basically a way of eating, a way of preparing food. It’s a healthy diet. It’s an anti-inflammatory, plant-based diet, and some fish. And you can’t just do macrobiotics half way. You have to go for making it a lifestyle, and that’s what I do. So, I don’t eat meat, which I’m fine with other people eating meat, but for me, it’s my choice not to. I don’t eat poultry. I don’t eat dairy, and I try not to eat a lot of wheat. But the bottom line, blood cells have to be made somehow, and they’re made as a result of the way you eat and the way you exercise. Believe it or not, that impacts blood cells.

So, unless someone’s ready to study me personally, I’m just going on faith here, but 38 months into it, all my blood counts have also improved, and my white blood cells have remained not only stable, but they’ve actually gone down, so I’m very pleased.

Andrew:

Okay, so I wanna give credit to Esther Schorr, my wife of how many years now, Esther? 30?

Esther:

It’s going on 34.

Andrew:

34 years. Esther and I have always exercised together, ran last night. Been living with CLL 23 years now, been treated twice: FCR, and then later with Obinutuzumab and high-dose steroid about a year, year and a half ago, and I feel really good. And our diet, again, Jay, we don’t know if that’s the thing, but now we’re really not eating red meat. We’re eating fish, chicken, not even a lot of that, fruit and vegetables.

Esther:

As organic as possible.

Andrew:

Point is, nobody’s studied us, but we do feel good. And I think all of us want to say, what can we do for ourselves. I wanna ask Esther, though, what we do ourselves is part of it. But what about the role of a care partner, whether it’s a wife or best friend or adult children? What would you say to care partners?

Esther:

Well, I just wanna back up for just a second and acknowledge what I just heard from all of you, and especially you, Maggie, because of the very high emotional impact. I just wanna acknowledge that for care partners with a loved one who’s diagnosed with something that feels and may well be very serious, the emotional impact can be as severe for your loved ones as it is for a patient in a different way.

Like, you feel helpless. I know that when Andrew was diagnosed, my feelings of, “Oh, my God, what can I do to help with this situation, because it’s purely a medical thing. I’m not a medical person. What’s the role of me as, I call myself a care partner.” And so, what I would say is over the years, what I’ve felt was the best way for me to support Andrew through a lot of ups and downs, it to be an advocate. Be a researcher and find ways for me to keep my head straight, when he happens to be a very practical kind of guy. But if he were somebody who was also very emotional, I think the role would be to be the voice of reason, the voice of practicality, looking at what dietary options there might be, what treatment options there might be.

Be actively involved in the discussions with the healthcare team, so that there are two sets of ears that are hearing the same thing. I’ve just felt like I’ve been the partner advocate for Andrew, and a pair of listening ears that’s digesting what’s being said, processing it, and giving him back, hopefully, an educated opinion about direction to go.

So, I don’t know if that answers your question, Andrew, but I think it’s a lot of advocacy, and being the person that’s gonna look at what are the more holistic supplementary things that can be done to support somebody who’s made a treatment decision. Let’s put it that way, because ultimately a patient has to decide. My body, my decision, with my doctor. But being a care partner is also about lending some sort of an educated perspective, and saying, “Here are some other things that we might consider doing together, or how I may be able to help you.

Andrew:

Maggie, do you draw on the family? You ended up telling them all. Do you draw on them for support?

Maggie:

I really do. My husband has been amazing. He’s kind of like my steady rock, and he goes to every doctor’s appointment with me. He transcribes everything that’s said in the doctor’s appointments. He researches with me on the internet, so that’s an amazing – My twin sister and her husband are both therapists and have helped walk me through that.

My children are very understanding. They were very frightened when I first told them, and I try to give them more and more information. I’ve given them the ling to your website. That’s helped them immensely. So, and then I’ve told a close group of friends, too, and they’re very supportive. Not many of them really understand the disease, but they’re very supportive. So, for me, it’s critical I have that support system. 

Esther:

Andrew, I was just going to add one other thing, that there isn’t always a family member that’s available. I just want to acknowledge that sometimes, somebody doesn’t have a partner, or a sister, or a father, or an adult child, but as a care partner, I would encourage anybody that’s dealing with this kind of thing, find somebody in your life, even if it’s a nurse, or it’s a counselor, or somebody that is going to take on that role for you, because it’s really important.

Andrew:

So true. Now, Adrian, you have five kids, right?

Adrian:

Yes, that’s right. The youngest is 12 and the oldest is 22, so that’s quite a range.

Andrew:

How have you gone through this? I mean, you probably have an active family life. You’ve had hospitalizations, you’re going through FCR. So, talk about treatment, family life, support –

Adrian:

It’s funny, our family life becomes a little bit different. I had to have a word with my 12-year-old, to make sure he understood that words like cancer and hospital are not so normal. But a lot of other families, and a lot of other kids, and so he could really freak out his friends, perhaps, by talking about, “Oh yeah, my dad’s got cancer and he’s in the hospital again.”

It becomes almost a bit of a matter of fact when you go into hospital so many times in a short period of time. Sometimes I have to say to my children, “I’m going off to get an infusion,” and they’re like, “Oh are you staying in hospital tonight?” I said, “No, no. The plan is for me to come home.” So yeah, it becomes part of family life, to a certain extent. Obviously very difficult at the beginning, and I think sometimes very difficult as it goes on and on.

Actually, in many ways, watch and wait was almost harder than when I was being treated, because at least they see that there’s a problem, and that the doctors are doing something about it. It can be quite hard, I think, for family life to continue when one member is really struggling to keep up. Like on the holidays, for example, I sit in the car while they’re all climbing a hill, and all of those kinds of things. It is tough, but I think people are resilient, and I would certainly say that the support from my family and friends has been amazing really. 

But I would also say, I think for me personally, it’s been really important to get some support from outside the family as well, and actually professional support. So, for me, I certainly struggled a lot with adapting to the diagnosis, particularly during watch and wait, where you feel like you’re in a form of purgatory. Too sick to work, too sick to enjoy life, but not sick enough to need treatment. And so, that was hard to deal with, and I think my poor wife. You know, it’s important that I had another outlet to talk to about that.

Andrew:

Yeah, Esther and I did that as well. Jay, I want to ask you, so you, right now, are doing well, but you have – You live on Long Island, but you have a world-famous specialist in New York City that you check with. How do you think about the future, knowing that CLL can change or evolve? And so, diet exercise is working for you, but it may not always. No one knows. 

Jay:

I feel this way, we have to do some of the heavy lifting for our doctors, because they’re so well intentioned, and they can give us miracle drugs, but if we don’t do our part, the disease will just progress, I think, that much quicker. And if I ever needed, god forbid, to be treated, I would do it. And I think it has to be an integrated approach, using the best that modern medicine can offer, and I think we have to do our part. And I think too many people just kinda give up at the beginning. They say, “Uh-oh, this is cancer,” and they get paralyzed, like they’re caught in the headlights. So, I think CLL is a bully, and I do my best to bully it back, and I’ll keep doing it as long as I can.

I hope that I can get – I was hoping to get ten years of watch and wait, and so far it’s been a little bit less than four, and if I can do this forever, great, and if I can’t at least ill make my body so strong that, hopefully, when it comes time for treatment, Andrew, I’ll have enough strength to wind up surviving.

Andrew:

And Maggie, what about you? What if it gets to the point where your physician here in San Diego says, “You know, has changed, your white blood count is changing, you’re developing various symptoms. We can get lymph nodes and night sweats and things like that. And it’ll be time for treatment. Are you prepared for that?

Maggie:

I think mentally and emotionally, I’m fairly prepared for that. I’ve also tried to be as involved as I can in other – Leukemia Lymphoma Society, and the CLL Society, and listened to a lot of podcasts from CLL experts. 

And I have such faith and hope in what’s happening in trials and current treatments, that I know that at some time – my prognostic factors are probably five years, and I’m doing everything I can, similar to Jay, and trying to stay healthy and eat a healthy diet. But when it comes to that point in time, I’ll raise my hand for a trial or go on the most current medication.

Andrew:

Now Adrian, you mentioned that you had severely inflamed tonsils, where you almost couldn’t breathe, and you said that’s kind of an atypical result of CLL. And you’re a physician, so I’d love your perspective on this. CLL can affect different people in different ways. What do you do as far as communication with your healthcare team, trying to sort out what’s related to the CLL and what isn’t? What’s related to the medication you’ve had and what isn’t?

Adrian:

It’s tough, isn’t it? Actually, in that instance, I was unable to sleep because every time I started to sleep, my tonsils did completely block and choke me, so I had a fair few days of not being able to sleep. But when I was admitted to hospital, losing my airway essentially, there was quite a bit of debate, because the EMT doctors looked at me, and they said, “Those tonsils don’t really look that inflamed. They don’t look that angry. We think this is not a sort of tonsillitis-type picture. This is not something typical. This must be more of a hematological problem. The guy’s got cancer, give him some chemo.”

The hematologist came and they looked at me and they said, “Well, the thing is, it’s only really the tonsils growing. The other lymph nodes, I don’t think we could even feel at that point, although they did grow later on, and his lymphocyte count is really low. Actually, they did say, “Could this be a transformation? It could be high-grade. So, there was a whole lot of debate between even those in that situation, about whether to operate

And obviously they did try some steroids for a few days, and c they didn’t shrink, they had no choice but to go in and operate, so that I could swallow again, and breathe again more easily. But that kind of thing has happened on other occasions, and when you get an infection, would you have got it anyway? Perhaps not, with my pneumonia. I mean, that clearly seemed to be related to my CLL in the first place. And I guess for me, personally, I just got to the point of going, “Well, we don’t always know whether it’s directly related or not.

I’ve got back pain. I’ve got some benign tumors in my back. We thought maybe that was causing it. Or is it the CLL growing it the bones cause it, or is it something completely unrelated, just ligament damage, or discomfort from the fact that I’ve been lying around for two years really, not mobilizing enough, not doing exercises despite my physio’s best efforts to get me going. You know, I don’t know, and I guess at the end of the day, we just have to look at the symptoms, really. It becomes symptom management and investigation.

I think it’s very important not to ignore new symptoms, because you never know what’s going to happen. I’ve heard of people having infections in bones and all sorts of things. Whenever I get a new symptom, I have to go to my GP, or I go to my hematologist, and we go from there, really. We investigate and we figure out what’s going on, or try to, at least.

Andrew:

Well, I wanted to talk about that very good point. And Esther goes with me to the doctor, and she knows, I say, “Well, I’ve got these little dots on my skin. Is that related to the CLL, or whatever?” Some things they know, because I call if I have a chronic cough or certainly feel like I have a chest infection, but other things, I don’t always know, but I always bring it up. What about you, Jay? You apparently, were not feeling well for years.

Jay:

Yeah, well, the funny thing was, I thought I was doing great. I was 193 pounds of muscle. I studied the martial arts for 20 years. I felt great, but I was 50 pounds overweight, so you just don’t know.

I thought I felt fine. I thought that occasionally getting fatigue was part of getting older, but when it got to that point where I couldn’t walk around the block without gasping for air, sooner or later you figure something is wrong. And then you take action. But the truth is, we’d all be better off, I think, if we understood the cues our body is giving us, but I didn’t at the time.

Andrew:

Right, and often the indication for treatment, Maggie, you’ve had various blood tests, but from what the doctors are telling us now in our programs, is are you having night sweats? Is your spleen enlarged? Do you have lymph nodes? Maybe do you have these kinds of things that Adrian

[00:27:59]. Certainly, do you have pneumonia, or recurring pneumonia?

All these things could be indications of treatment, not just the number of your lymphocytes. So, it requires communication. So, do you have really good communication with your doctor now, Maggie, and you feel you have a trust relationship, and that gives you confidence?

Maggie:

I did when I first met with my CLL specialist, I thought, “Oh, it’ll be a 15-minute meeting.” He spent almost two hours with me and talked about everything that was going on for me. If I thought it was a symptom, we discussed it. For me, probably a month before I was diagnosed, I started to get really bad sinus headaches. And I talk to my intern about this. I said, “Could it be the CLL?” And she said, “No, no, that’s ridiculous.” And I talked to Doctor Choy and he said, “Very likely, since this is an inflammatory disease, and this can affect your sinuses and it can affect your respiratory system. Any place that you can carry inflammation in your body.

And I felt like he really listened, because he said, “Here, try these different over-the-counter remedies,” and it’s really, really helped me a lot. But I do prescribe talking to your doctor, telling him anything. And I’m at that age of a female where menopause happens and you get hot flashes, but mine have continued. I’m over 64 now, and I talked to my CLL specialist. He said, “These are probably CLL-related.” So, even though I would like them to be menopausal hot flashes, I do believe they’re CLL hot flashes. I don’t have the drenching night sweats, but I feel like there’s a furnace inside me that just kind of turns on, and it wakes me up at night.

So, I’m trying to deal with that. I keep my room, my poor husband, at around 60 degrees at night. I’ve got two fans pointed right at me, and it helps me get through the night. So, these symptoms are –

Andrew:

But you have that [inaudible – crosstalk] [00:31:18] with your doctor to try to figure out what could be related to the CLL, and at some point, maybe, part of the indication for treatment.

Maggie:

Exactly, and if these get too bad, I’ll say I’m ready.

Andrew:

Well, I’ve been living with CLL for a long time. I have a chronic cough sometimes, there you go. One of the things, though, that we were worried about, and Esther was part of these discussions, is sinus infections. And we were talking about sinuses a minute ago. And so, Dr. Kipps, who’s another doctor at UC San Diego, he said, first of all, you can be prone to infections with CLL, and in your sinuses, the bacteria can have what he called a pool party. 

So, what do you do about it? Do you just – antibiotics all the time? He said, “You should try a nasal wash, every day.”

Esther:

A netty pot.

Andrew:

A netty pot, or there’s some other ways. You can get a little squeeze ball.

Adrian:

Yeah, but this is a little bit more, sorry this is not supposed to be product placement, but this is a bit more pleasant than a netty pot. I just spray this. It’s a sort of A-line spray. I find that really, really good.

Andrew:

Right, and I have something similar, so I went to the local pharmacy. There’s a little bottle you can get, and you put little saline packets in it, and warm water, and it has a filter, and every morning, I do a nasal wash and guess what, no infections. Now, I’m doing other things, as well like I get immunoglobulin once a month, which my doctor thinks is important for me. But the point is, it’s what I can do, and it’s like what you can do Adrian. This is something we can do. We may be prone to nasal infections that could be respiratory infections, could be pneumonia, which is bad news for us with CLL. And you’ve had pneumonia, right, Adrian?

Adrian:

Yeah, that’s right, and throat infections, yes.

Andrew:

I’ve had it, too. So, this is serious business for us. So, these are things, whether it’s diet, whether it’s exercise, whether it’s communication about hot flashes, all of these things. And Esther, when I speak up about something, you normally say, “Call the clinic,” Right?

Esther:

Yes. And the calling the clinic is two-fold. One is, I agree completely with everything everybody said, the kind of thing that you’re doing, Jay, makes perfect sense. You’ve studied it. You’re taking an approach.

The only caution that I would give Andrew, and especially since I made a mistake early on of doing something we shouldn’t have done, is don’t take on some kind of a supplementary or what you think is a complementary remedy, because you’ve read about it, because five people said it works for the, That if you’re gonna take something on, at least discuss it with your doctor. So, I’ll just tell this quick story, when Andrew was first diagnosed, one of the things we did, besides finding a specialist, we went to a naturopath. Remember this, Andrew? And he said, “Oh, you need to take mega doses of,” I don’t know what it was, Vitamin A or D, it was one of the vitamins.

And then when he finally got to see the specialist at MD Anderson, he said, “So, what supplements are you taking?” and he said, “Well the one thing I am doing is, we’re juicing,” which was okay, “But I’m taking this mega dose of whatever.” And he said, “You know, I think you should probably stop that, because there’s studies that have recently come out that say that it could cause the proliferation of CLL cells. It was like “Eh.”

So, I just tell the story, because the kind of thing you’re doing, Jay, sounds like you’re done a lot of research. I’m assuming your physician knows about it. Those kinds of things are good, to compliment whatever else is going on, but to make sure that he’s on the same page about whether there’s some potential downside to it.

Jay:

Absolutely. I’ve gotten some – somehow, I’ve gotten some kind of notoriety, you know, and that’s not good or bad. But I’ve had an average of two emails or phone calls a week, people literally asking me, “What can I do?” So, I’m a year away from becoming a counselor, a macrobiotic counselor. So, I’ve been studying this for four years. So, I tell him, from a patient’s perspective, and some of the things they’re doing are just crazy.

And I literally say, “Look.” Always preface it with, “Discuss this with your CLL specialist. And if you are doing something, chart your results, and see, on a quarterly basis, how your liver function is doing. When I was first diagnosed, my liver was, my ALT was 92, which is 50 points too high. Within six months, it went down to 30, which was normal. I had diverticulosis. I had acid reflux disease. That’s all gone now. But it didn’t happen over night, and you do things gradually. And every step you take, you check with your doctor.

And candidly, I have a wonderful doctor. I don’t want to mention his name, because I don’t wanna – But he is the tops in my opinion. And he does not necessarily believe that what I’m doing is going to affect my CLL that much, but what he does like is the results. He likes seeing me healthy. He likes seeing my blood counts so good and stable, and I don’t expect a medical doctor to believe in the dogma that I believe in. I’m using that medical doctor for his knowledge, and it should be a collaborative-type thing.

Maggie:

That was my point, exactly. Thank you, Jay.

Andrew:

Well said, really well said. Okay, so, we have a medical doctor with us, who’s also – So, Adrian, this whole person thing. What can we do that makes sense for us, that’s not harmful, and how do we partner with our doctors? How do you view it?

Adrian:

Well, for me, personally, when I was diagnosed, I was pretty fat. And I think, as a middle-aged guy, I think quite a few of us have a spare tire. And I resolved, straight away, I was gonna lose that. And I did, and that wasn’t because of the CLL. We do have to be watchful about that. We don’t want to be losing weight excessively fast. 

So, I did change my diet, not as radically as Jay, but for me, I decided to cut down significantly on carbohydrates, and just to maybe do a little bit of intermittent fasting. And I managed, over a number of months, to lose the weight gradually. But what I would also do, was every now and then, I’d have a cheat week, just to make sure that if I lifted the foot off the accelerator of my diet, that I would actually regain the weight, because I didn’t want it to be misconstrued that it was my illness. But if you look at my weight chart over those 60 months of watch and wait, it was gradually going down in a nice, smooth, controlled way. But unfortunately, that didn’t seem to help, for me, personally. It does for some people, but it didn’t for me.

The other thing I tried to do was physio. I’ve been seeing a physio now, most weeks, sometimes twice a week, since November of 2018, because I had this awful sense of the decline in my mobility. I was using sticks as a 46, 47-year-old, and I still do. 

But the physio, I do think, helped a bit, and I think exercise definitely helps, but unfortunately, it’s kinda like there’s a weight pulling you down, and sometimes exercise isn’t enough. But I tell you what, when I was stuck in my hospital bed, unable to get out, this was in November, after my first FCR, unable to get out safely, it was my physio that taught me some bed-based exercises that I think helped me to get out. One of my doctors was saying, “You’re gonna end up in a nursing home, Adrian, if we’re not careful here,” because I was just so weak.

And I just did some very simple things, lifting my legs out of the bed, pushing my bottom off the bed, things like that. Things that my physio had taught me. And then, over a few weeks, I gradually started to regain my strength. And that’s where I am at the moment. My physio says to me now, I’m very badly deconditioned, from the last nearly two years now, of being ill. And I’ve got to gradually build myself up, not overdo it, not boom and bust, not do too much, so that I don’t do anything, but gradually try and regain my strength.

And that’s after treatment, but I think sometimes in watch and wait, if you can get as thin as you can, if you can get to an optimal weight, and if you are allergic to foods, certain foods seems to provoke your inflammation, then definitely cutting those out. All of those things, to me, seem to make perfect sense, again, provided you’re talking to your doctors about it.

Andrew:

Right. Boy, this is such great advice. So, Maggie, how are you staying in as good of shape as you could be, knowing that you may have treatment, but you’re trying to do what you can do? What are things you do?

Maggie:

Right, yeah, so I think, and I do believe it’s the CLL, I do get tired in the afternoons. There’s an exhaustion level that I kinda never felt before. I’ve always been extremely fit and extremely active, so I made sure that I try to exercise every day, but I do it first thing in the morning. I’m a master swimmer and I play golf a lot. I do a lot of walking.

And when I was first diagnosed, I did notice that my times were dropping, as a master swimmer. And so, no I’m just not pushing myself as hard. But I’m still in the pool, I’m still working out. I’m still saying, “Hey, you’ve gotta push yourself a little bit, but don’t overdo it. Don’t way overdo it.” So, I stay active and that’s really important in my life.

Andrew:

I’ll just say, pass on one thing. A British doctor, Adrian, who you may know, John Gribben, is one of the top CLL specialists. He said to me years ago, before I had FCR, and Esther and I would run every day, and I probably couldn’t run as far as fast. He said, “After you have treatment, you’re probably gonna feel a weight is lifted from you.” So, that’s what I did. I mean, I did many of the things you’re talking about, Jay, as far as diet, exercise, but in my case, when it came time for treatment, which was a high white count, swollen lymph nodes and enlarging spleen. 

When we knocked the CLL back, Maggie, I did feel I had more energy. And just a couple of other things I’d mention, we were talking, and you were great about it, Jay, saying what’s working for you, and what you’re studying. But everybody’s saying check with your doctor. Esther, do you remember when you read something online, not just about the juicing, but distilled water and we had distilled water, and we lived in Seattle, where Starbucks come from, and you said, “Stop drinking coffee.” And I stopped drinking coffee.

Esther:

Well, that speaks to what happens to a care partner. I have to be honest, mia culpa, I felt no control over what was happening to you. So, I started to read everything I could find, and at the time, there was a book called spontaneous healing. The gentleman who wrote it was very well known national and internationally. 

Seemed to make sense. None of it was super extreme but living in Seattle and not drinking coffee was pretty extreme. So, I had to learn along with you, Andrew, that you have to – there’s a balance. You can’t stop living. You can take an approach like Jay, which, for him, a disciplined, very disciplined approach to eating is working for him. For you and I, what seems to have been working is good, healthy diet, exercise, laughing a lot, travelling, doing those things. That’s working, seems to be, knock on wood, working for you. And as a result, I feel like we’re working together on this. Yeah, it’s like, there’s a point where you don’t want to stop living over it.

Andrew:

Right, right. One other point, I mentioned that I’ve had CLL treatment twice, although separated by 17 years. And Adrian, post-FCR, I hope you have a long, long remission.

But we’re blessed with some very modern treatments now, and that’ll probably be discussed with you, Maggie, and should you need it, you, too, Jay. Lots of new thinking and lots of research, and several of us go to doctors who are in the lab as well as in the clinic.

And so, I feel really confident that if we do what we can: diet, exercise, emotional well-being that you were referring to, specifically, Adrian. If we get our head on straight, and take back control, with our partner, Esther, or whoever it may be for you, that we’ll be in the strongest possible position to live a long, long life. Maggie, do you feel that way when you think about it now? You’ve watched all these podcasts and videos. Do you and your family feel you’re gonna be around for a long time?

Maggie:

Yeah, and I’ve always said that CLL [00:45:10] under the ground. So, I’m gonna be out there on the, you know, the fullest life, the happiest life, and just stay as active and engaged and involved, and like you said, laughter is really important through all of this. When I laugh, I totally forget that I have this CLL, and it works for me. So, that’s my path.

Andrew:

Okay, so for final comment, Jay, you’ve been living with this, doing what you can. What would you say to people, whether they’re newly diagnosed or wherever they are, what advice, knowing that people are different, and you’re gonna be a counselor too? So, tell us what words of wisdom you have.

Jay:

Words of wisdom is this: I said it earlier, you have to do, you have to take some responsibility for your general health. And I think it’s just really irrefutable, that if you do things like watch what you eat, you try not to be too stressed, you make an occasion to walk a few times a week, you’re just going to feel enabled. You’re going to feel healthy. And you can’t give up.

You have your CLL life, and you have your general health, and they can’t be separated. You can’t have one without – You can’t have good CLL health, I believe, unless your body is very strong. So, do the best you can and take it slowly, but every day, set a goal to do something that might make you feel healthier, might make you feel less depressed. Live life, enjoy life, but don’t equate taking personal action and responsibility for not enjoying your life. To the contrary, you’re helping yourself live a longer and healthier life. That’s what I would say. 

Andrew:

I’m just gonna tell you one quick story. Esther and I went jogging at the end of the day, and a woman probably in her 20s ran past us, and I started speeding up. We didn’t catch her, but I was running faster, and Esther said, “You’re running so fast today,” and at the end I said, it was affirming for me that I could do it. That I could chug along a little faster was affirming. It was something I could do in one day that helped me.

Jay:

Andrew, you look great, so I have to ask you, seriously, I haven’t made you crazy and put you on a special diet, but what do you do besides running?

Andrew:

Just running, and this afternoon is going to be going on a bike ride. And I’m gonna try to go up the hill over here. And then maybe get some coffee, Esther –

Adrian:

But hopefully, not a latte, Andre. No lattes, yeah? No lattes.

Esther:

We get them with soy. We get it with soy milk.

Adrian:

It’s the sugar. You don’t want the sugar in the latte syrup, you know?

Esther:

Right, right.

Andrew:

So, I do that, but I think it’s a matter of, after 23 years of CLL diagnosis, just live your life. You said it Jay. And Maggie, for you, you’re playing golf, you’re laughing. You picked yourself off the floor after the diagnosis. You have everybody try to understand as best they can, and you go be yourself. And Adrian, you too. You’re trying little by little, to get back to equilibrium, right?

Adrian:

No, that’s right, and it’s about looking at the positive things. I mean, I think we have to accept sometimes it’s gonna be negative stuff, but there’s also positive things. So I’d gotten to the point where every night I slept outside of a hospital was a real gift, at one point. And just, the ability to, I don’t know, cook a meal for the family was a huge step for me. Things like that. And being grateful for things, and, as you say, moving along that journey and hopefully, heading in the right direction rather than the wrong one is always, always positive.

Esther:

I think a lot of this, I’m listening to this, a lot of it is attitude. Jay, you asked Andrew what is he doing, and I watch him every day. And he’s just two steps ahead of everybody. He’s just positive attitude, and whatever’s gonna happen, he’s gonna take as much control as he can, he’s gonna rely on his support system and his doctors, and he just keeps moving ahead. And I think that makes a big difference.

Jay:

Yeah, and I think the fact that you two, Esther and Andrew, do so much to try to help people, I think all of us would agree that if we’re trying to help people, it’s a wonderful thing, and we feel blessed and empowered. So, as bad as CLL is, and I hate having this disease, I think it’s a real bully, in my opinion, I’ve become maybe a more understanding person. So, it’s not all negative, you know. It’s mostly negative, but there are some bright things about it.

Andrew:

There really are, and so I appreciate every day. Maggie, you’re at a beautiful golf resort, La Quinta, so you’re just gonna go swing away now, right?

Maggie:

Right, in about 15 minutes, I’m leaving for the tee box, so it’ll be fun.

Andrew:

Well, I wanna let – Just, thank you for being part of this CLL patient café. I wanna thank our supporters, ABVI and Pharmacyclics, who have had no control over anything we’ve said. This is very free-wheeling, but we hope it helps everybody. Maggie Buckenmayor, I want to wish you all the best with your golf game, and wherever your CLL journey takes you. And don’t freeze your husband out, with the fans and the cool temperature.

Adrian, all the best as you continue the FCR and just hopefully –

Adrian:

No, I’m done with CFR. I’ve had my six. That’s over, mate. No more for me. I’ve had my six. Never again. The UK will pay for the newer drugs for me the second time around, so if I need anything else, it will be one of the newer drugs.

Andrew:

All right. And so, may you go on and get your walking. You’re gonna be jogging with me and jay before long, okay?

Adrian:

I’ll do my best.

Jay Blatt:

You’re gonna be carrying us, he means.

Adrian:

I don’t know about that.

Andrew:

Jay, thank you so much and all the best with you, and I’m gonna read up more about what you were discussing. And Esther, thank you for being my partner all these years, and all the partners out there, wherever you are watching, thank you. You’re a blessing for all of us, and we really appreciate it.

Jay:

Thank you, Andrew and Esther and everybody else. 

Maggie:

Thank you guys.

Adrian:

Thank you guys.

Andrew:

I’m Andrew Schorr, from Patient Power. Thanks to the Patient Empowerment Network, for putting all this together, and thank to our sponsors for helping us, so we can do this. As I like to say, remember, knowledge can be the best medicine of all.

Patient Cafe® CLL – October 2018

Dealing with a Mid-Life CLL Diagnosis

Patient Cafe® CLL – October 2018 from Patient Empowerment Network on Vimeo.

Four Chronic Lymphocytic Leukemia (CLL) patients got together to share their story and advice on dealing with a mid-life diagnosis, and how that can affect your personal and professional life.


Transcript:

Esther Schorr:
Hi there. Thank you for joining our Patient Cafe today sponsored by the Patient Empowerment Network. I’m Esther Schorr, and today I’m meeting virtually with a group of CLL patients, chronic lymphocytic leukemia, who are all facing this diagnosis during their middle years. So of course there’s no really good time to be diagnosed with something serious or diagnosed at all, and it’s never easy and it’s never welcome, but in our middle years the career ball, your personal life direction, the people that you indirect with, the relationships you have are already pretty well in progress and a diagnosis can feel as though personal and professional life kind of had a monkey wrench thrown into it and that your plans for life could be derailed.

Our guests today are going to share their stories and advice about how they’ve been able to deal with a midlife diagnosis. So just before we start I want you to know that this conversation is never, would not be a replacement for medical care, medical advice. Each patient’s situation is unique, so I really encourage you to consult your own doctor, your own medical team for the treatment that’s right for you.

So first of all I just wanted to tell you a little bit of where I fit into this conversation. My husband, Andrew, who you’re going to meet in a second, was diagnosed with CLL in his mid-forties, and at the time we had two small children.

Also, we were in the middle of growing a fledgling business that then became what we do now in educating patients. And we were devastated. It was scary. We didn’t know what the complications long term were, we even wanted to have a third child at the time, and certainly, like most people, we didn’t know anything about CLL. We didn’t know. And the word “leukemia” was very frightening. We were very lucky at the time. We had supportive family and friends, and we found great medical care through networking with other people on the internet, through online support groups, etc. And ultimately Andrew got through a clinical trial, went into it, went through the trial and had a long remission, and we’re very, very thankful for that.

As a care partner, I will tell you it’s taken years of ups and downs for me emotionally to come to terms with the fact that we can’t really live our life based on what‑ifs.

And we’ve gone on together with our friends, our family, and we just live our life. We now live in southern California near the beach with our dog, and we have three grown kids who are very supportive, and‑‑but we’ve learned a lot along the way. And so I’m hoping that this discussion will help those of you that may be in similar circumstance to kind of come to a place where you can move on with your life and feel empowered. Is that’s my story. I want to have each of our guests introduce themselves. So why don’t start. Jeff, Jeff Folloder, why don’t you start.

Jeff Folloder:
Hi. I’m Jeff Folloder from Katy, Texas, which is just outside of Houston. I am a CLL patient, and I am also a Patient Power advocate, champion, evangelist, pick one of the terms, whichever one you’re comfortable with. I was diagnosed at 46 years of age.

I absolutely, positively was not expecting to hear my doctor say something’s wrong and you need to go see a specialist. Walked into the specialist’s office, saw a bunch of old, sick people in there, said this isn’t me, and the next day I was told, yes, it is. So my diagnosis did absolutely come as something of a huge shock. It was like a sucker punch in the gut, and it took me a bit of time to figure out has comes next.

I was very fortunate to get connected with some folks here in Houston who got me enrolled in a clinical trial after two, two and a half years of watch and wait. I got six and a half years of rock solid remission out of my clinical trial. This past July I have recently relapsed, and I’m looking at it right now quite frankly as no big deal.

I’ll get treated when it’s time to get treated. In the meantime, I’m driving all over the country, I’m doing all kinds of things. I’m living life to the fullest, and it’s actually okay to take a nap.

Esther Schorr:
Thanks, Jeff, that’s perfect, and we’ll talk more about that journey for you in a minute.

Jeff Folloder:
Absolutely.

Esther Schorr:
Let’s try the other person, Andrew, and then we’ll hit Michelle and Jeff.

Andrew Schorr:
Esther, thank you for hosting this program. So you recall vividly I had a routine blood test at age 45, and the doctor initially said when he tested my blood, oh, you’re probably fine because I had been getting some nosebleeds, and then he called me, and he said you’re not fine. What is it? Leukemia. What is leukemia? I wasn’t even sure it was a cancer. And I also didn’t understand the difference between acute leukemia and chronic leukemia. And so what knowing I’d heard somewhat about acute leukemia then, Esther, you and I, remember, we walked in the park in a sunny spring afternoon near Seattle, and I thought I was dead. And I was saying at 45, we have two kids, hopefully you’ll be well provided for, and I had life insurance. Is that it?

Well, fortunately, it hasn’t worked out that way, and I got a long remission, pretty long, Jeff, 17 years, actually and then needed CLL treatment again many months ago, and that’s worked well. So just like what Jeff said, knocking it back, going on with my life. We had a third child, but when I was first diagnosed I thought it was over, but now looking back I know it was really just the beginning, but maybe seeing life a little differently but living.

Esther Schorr:
You thank you. Thank you for that, Andrew. Michelle, tell us a little bit about you.

Michele Nadeem-Baker:
Hi. I’m Michele Nadeem-Baker, and I’m a Patient Power advocate as well and a Patient Power patient reporter. And I have to say, as Jeff had mentioned, I was in shock, absolute shock, no awe, but in shock when I was told that I had CLL. My PCP like everyone else’s had said that my white blood counts were a bit off, told me to see a hematologist, and I was very naive not realizing hematologists generally went along with oncology.

Went to the local medical center when I lived in Miami and was not told I had CLL, and then I was called back in for when some other test results came in, the flow cytometry came in, which I now know but at the time had no clue what that meant, had no clue what the doctor was talking about. He didn’t even‑‑he said I had the C word. He didn’t even say cancer. And then he said CLL. I had to ask what that meant.

And that’s why I’ve been such an advocate for communicating better for patients because I was a bit dumbfounded as well as in shock. He had no information to give me, and I have since tried to learn a lot and become an advocate for other patients. Andrew is the first person I met with CLL. I reached right out to him, but it was very tough.

I had been married at that point for only two years to my now husband, and it was a real, real shock. My career went into a tumble, a turmoil, and it got put on hold for a while. So I was in watch and wait for about three years. In that time I moved back to Boston, so I could be seen at Dana‑Farber. And as both Jeff and Andrew said, life does go on. You just‑‑you have to get into kind of a new step and a new rhythm, but life does go on thankfully and thanks to all the research that’s been going on.

And I’m still on a clinical trial. Still in remission. Fingers crossed that will continue. And I’m happy to chat about anything that will help.

Esther Schorr:
Right. We’ll have a lot to talk about, I think. Thank you, Michelle. And the other Jeff, tell us a little bit about where you’re from and where you’re at now.

Jeff Brochstein:
Will do, Esther. Thanks again for having me. Really, my story follows much of the same path. Diagnosed at a fairly young age, 38 years old. I discovered a small lymph node in my neck while I was washing up one Sunday night back in late 2012 and got it checked out and couple months later high white blood cell count, and another high white blood cell count when I was tested again, and I was diagnosed. And really from there I just buried myself in just doing all the research and all the data gathering that I could.

Maybe about three, four months after diagnosis I discovered Patient Power. I found Andrew. I gradually started corresponding with him. From that point on, the next four and a half years I was in watch and wait until probably late 2016, early 2017. Reached out to Andrew again at that point. We had a conversation about FCR, which my doctors here in Atlanta had been talking to me about. Decided to go to MD Anderson after seeing some of the videos on Patient Power of Dr. Keating, Dr. Thompson. Went there to see actually Dr. Thompson who had mentioned ibrutinib and some of the other targeted therapies that had been just approved for frontline. And came back to Atlanta and my doctor and I kind of came to the conclusion that maybe starting with one of the targeted therapies was probably best me being unmutated.

And started ibrutinib March 2017 and lymph nodes went away after a week and kind of been in remission pretty much ever since and everything’s going well.

Esther Schorr:
Thank you, Jeff. And all of you, there are some recurrent themes here that we’ll talk about, but obviously this whole idea of coming into the middle of your life when a lot of things were already in play was something that you had to pretty quickly say, okay, what am I dealing with and then figure out how do you continue with what you were already doing and how does it fit in.

So I want to dig into that a little bit more, and I’d like to start with you, Michelle. And tell me if I’m wrong, but my understanding is that when you were first diagnosed you were really in a pretty high‑level executive position in PR and communications, and how did you cope with the diagnosis in the middle of a very busy professional life?

Michele Nadeem-Baker:
It was not easy, and that part still isn’t easy. I’ve been trying to still come to terms years later with that. I was at a height of my career in a dream job, and I knew that I could no longer stay in that job because it meant staying in Florida, and I needed to move back home where my family was and my husband was. We had a long‑distance marriage because of career. It made me realize what’s really important in life, and that’s to be with family, but I was able to then continue using parts of my career in other ways and to help, as Andrew did. You’re doing very similar things yet now you’re doing it to help patients, and that’s what I’ve been trying to do. You’re a great mentor, Andrew. And so it, yes, it was very difficult when it comes in terms of that and as well as income and being used to being a high income earner and then not having that.

Esther Schorr:
So can you share how you made that transition? It sounds like you moved closer to family.

Michele Nadeem-Baker:
I did.

Esther Schorr:
And career‑wise what helped you make that transition?

Michele Nadeem-Baker:
I had to give up my job and my career. And I was well known in Florida, and I moved back up to Boston. I needed to remake connections from when I lived and worked here. And I’ve been consulting ever since versus within a company and a full‑time job. So trying to use what I do best, just communicate and go and help others. And what’s been happening is I found that it’s been mostly in life sciences and related fields.

Esther Schorr:
Okay. Thank you. You know, you mentioned Andrew. Andrew, did you want to speak a little bit about that transition that you had to make because we were at the time sort of building‑‑well, sort of. We were building a business and a family at the same time.

Can you share a little bit about what it took for you to make the change that you did?

Andrew Schorr:
Sure. Well, I think‑‑we were fortunate. We were already working in health communications. Michelle has sort of made that transition, and Jeff too actually is spending a lot of time doing that. So you kind of‑‑for us, you know, Esther, you and I think accelerated in what we were doing. I think for Jeff and Michelle they’ve sort of joined in where you can leverage what you’re learning as a patient to help others, and that’s very satisfying. And fortunately now with the internet we can to some degree do it on our schedule.

So sometime we’re tired. Sometime we’re distracted‑‑not distracted, that’s not fair, but we have doctor visits. We have bone marrow biopsies. We have other things. I get IVIG, monthly infusions. So how do you juggle all that?

And I think we learned to do that. At least that’s what I’ve done, and I think it’s been satisfying that we can communicate with others, and it’s part of who we are. Never wanted the diagnosis of CLL, no, no, no, but if you have it how can you go forward and do that? And I know both Jeffs are involved in helping other patients as Michelle is too, so that’s part of it.

Esther Schorr:
Thank you. So, Jeffs, any additional comments or points you want to make about this?

Jeff Brochstein:
As someone who is probably I think out of everybody here who is maybe less in a patient advocacy role, I mean, I’ve done it a few times, I’m always open to who, you know, Andrew sends me in terms of young people who are diagnosed who want to speak to someone with whom they can share experiences with, you know. I’m an IT projects manager. It’s not necessarily boiler room type work but it’s still, it’s pretty fast paced.

It’s pretty intense at the times. One thing that I’ve really experienced in terms of just first firsthand trying to deal with having CLL and making all the appointments, the bone marrow biopsies, the routine blood work, you know, I tend to‑‑I don’t openly communicate my condition to everyone at work, but I’ve been lucky and I’ve been blessed to have pretty decent managers who I directly reported to ever since diagnosis, and they’ve been just very accommodating and understanding. And in some regard they have to be, but I’ve been lucky enough to find that in the workplace, and that’s been really, really great.

Esther Schorr:
Okay. And actually that’s a great segue because the next thing I was going to ask about was how each you have handled communication with family and friends about the diagnosis. That’s a very personal thing. There are some people who are way out there and, gee, we don’t know anybody like that, but it’s a really personal thing. So maybe Jeff, Jeff Folloder, how did you handle that initially, and has that changed over time?

Jeff Folloder:
Well, I never hid my cancer diagnosis from anyone. I believe in the very first Patient Power event that I did I talked about the mistake that I made with my cancer diagnosis. I told my family. I told my wife. I told my daughters. I told my friends. But I kind of sort of forgot to tell my daughters that my CLL wasn’t considered hereditary, and my daughters kind of sort of flipped out for a significant period of time until I learned, wow, I should probably let them know what exactly is going on so that they can stop worrying a little bit.

And I did. And so now I make sure that people understand what it is that I think they need to hear. I don’t tell everyone the gory details of my CLL experience. Some people I tell, yes, I’ve got cancer. I’m a survivor, or I’m in remission, or I’ve relapsed. And the people I care about, I make sure they understand what’s really going on and how it affects me.

And at this point some almost nine years after diagnosis, and I know this is going to sound very counterintuitive, cancer gave me an awful lot of opportunity. I would have not had the ability to pull the hand break up on my life and reprioritize everything without a cancer diagnosis. I was moving too fast. Concentrating on the wrong things. Spending my energy on the wrong things. Now I focus on the right things.

And as Andrew is fond of saying, I’ve learned how to live well, and that’s because I’ve learned from everyone involved with Patient Power.

Esther Schorr:
Wow. Well, thank you. Michelle, Jeff B, Andrew, other commentary about how you communicated or chose not to communicate?

Michele Nadeem-Baker:
I did the opposite. Because‑‑probably because my career included crisis communications I was afraid if once I let out the info it would be career suicide, which is a very sad thought when you think of society. But instead now I’m trying to change that, that thought has that’s out there, that you still can be viable when you have a cancer diagnosis, which everyone here is proof of. But I was very afraid of that, that that would ruin my career.

As a matter of fact, I did not come, you know, out until I started in the infusion room and reported for Patient Power from it each time.

I was in infusion with the FCR part of my trial. So it dawned on me that in the past I had worked with the American Cancer Society and convinced people to come out about their cancer and explain to other patients. And I felt somewhat like a hypocrite that I did not, and I realized it was time. It was really time to do that. And it wasn’t only about me. It was about others as well. And that really helped empower me a lot.

And also as Jeff has said and I was saying before, it really does help you prioritize what is right, the right things to be spending your time on because I was on the hamster wheel of career and never sleeping, and this forced me, I had to. And as you said, naps aren’t a bad thing. I had to learn that, too. So it does help in certain ways, although it’s not a great way to have to learn the lesson. It is what we have, so you have to make lemonade out of lemon s, and I think that’s what all of us here have been doing.

Esther Schorr:
Thank you. And Jeff B?

Jeff Brochstein:
When I was first diagnosed, there were a handful of people, friends and family, who I told. And I can honestly say and somewhat brutally say this, there were some people that swept it under the rug because it’s a chronic condition. I didn’t need treatment right away. Many of them didn’t understand that, it being cancer, because they’re used to acute cancers, tumor‑based cancers that you have to attack immediately.

You know, I had other people who kind of buried me already because I told them cancer, and they stopped reaching out to me. And even up until today I still get a rare text message from some of these folks asking me, not in these words, but they pretty much ask me if I’m still alive. And I’ve kind of put them out of my life.

And there were some who were understanding, who actually read up on the things that I had sent them about CLL and how it’s chronic and how there’s all these emerging therapies on it.

So really for about a couple years after that, to kind of going to what Michelle was saying I was kind of in the closet about it. And then when my lymph nodes in my neck became a little more apparent and I really couldn’t explain it away all that easy, I came out a little bit more about it. And, you know, like I said, there have been people who have been very understanding. There have been people who have told me, well, it’s chronic and you’re taking a pill for it now so it can’t be that bad. And there’s been other people who have been like, oh, my god, cancer, you’re still alive. And, you know.

Esther Schorr:
I’m going to go a little bit out on a limb, Jeff. If I understood correctly you were diagnosed‑‑weren’t you diagnosed when you were still dating your wife? Is that?

Jeff Brochstein:
Her and I had just gotten engaged. We got married last year. She’s actually expecting, by the way, late February.

Jeff Folloder:
Congratulations.

Esther Schorr:
Congratulations.

Jeff Brochstein:
We’re having a boy.

Esther Schorr:
Oh, that’s so exciting.

Jeff Brochstein:
Thank you.

Esther Schorr:
And I bring that up because the other question I kind of wanted to explore with all of you is how did your diagnosis, if you’re willing to share, impact your relationship with your significant other or your spouse, you know, the person that’s closest to you? Was that different than dealing with other people? Anybody want to…

Jeff Brochstein:
I can start that off. You guys met Olga at ASH last year. If anything it’s solidified us. She’s a fire brand about it. She’s my rock. I really couldn’t make it through this without her. She’s been vital in terms of just my survival and us just having a happy life together. And we’ve been challenged by a lot of things. This is probably one of the biggest challenges, and it’s just made us better. So even under those circumstances, so.

Andrew Schorr:
Esther, I think I should jump in.

Esther Schorr:
Go ahead.

Andrew Schorr:
And you can tell us. So, you know, I was sort of more clinical. What do I have? What do we do, etc.? And as I said earlier, I thought my life was over, was relieved to find out it wasn’t. But all this was coming down on you too, and I don’t know to what extent you really shared how you were feeling because it definitely affects. We were‑‑you were a young woman. Esther’s seven years younger than I am, so you were younger. We had the idea‑‑we had two little kids, and we had the dream of having a third, so you might share what you were thinking.

Esther Schorr:
Sure. There was never‑‑I think the hardest person to share your diagnosis with was you, and my feelings about your diagnosis, the hardest one was to share that with you. And what was most helpful to me because I had loads of fears was to share it with other people who loved you as much, loved you in their own way as much as I loved you as my spouse.

So, you know, I think if anything it just solidified my dedication to our relationship and to figuring out the best way to support you emotionally and physically and professionally. So, yeah, you know, all of you have been talking about sort of there’s this weird silver lining of having a diagnosis of something. The silver lining is you look at what you’re really grateful for. And that’s really what it did for me as a care partner to you, Andrew. To say, okay, this ain’t good, but what’s the good stuff that we can do if we work together, and that’s really what’s happened.

Andrew Schorr:
We should mention that we began couples therapy.

Esther Schorr:
That’s right. We did, and that was very, very helpful so that I was able to communicate with you openly and you weren’t afraid to tell me when you had feelings, whether they were of fear or trepidation or not knowing how I was going to react. It took a long time for us to figure that out. I think we have.

Jeff Folloder:
One of the interesting things that happened in my particular journey, I got the diagnosis and of course everyone’s freaking out in the house. My wife is freaking out in the house, and she was being somewhat stoic about it and really didn’t know quite how to deal with things.

When the first doctor that I had seen that had given me the diagnosis described the treatment plan he wanted to do, I did a typical type A personality thing and said stop, went and talked with Dr. Google for an awful long time and decided that I needed a second opinion right then and there. And one of the watershed moments of my treatment journey was when we were sitting in that clinic room at MD Anderson when my doctor, not me, but to my wife walked over, picked her up out of the chair and gave her a bear hug to let her know that she’s a part of this process as well. It’s not just about me. And that was sort of a little bit of a release from the pressure valve because this is very much a team journey. I can’t even begin to imagine someone with CLL going through it by themselves, so I am extremely grateful to my beautiful bride of 31 years, and I could not have gotten to this day without her, period.

Esther Schorr:
Thank you. Michelle, did you have something you wanted to add on this?

Michele Nadeem-Baker:
Yes. A few things in that we waited until recently for couples therapy. I would suggest that it be started sooner, as you and Andrew did, because it would have been very, very helpful.

In the beginning I tried to protect my husband from things, and as I was living in Florida and he was in Massachusetts I considered not even telling him. In the first 24 hours, you know, your mind does crazy things. He was not with me because I didn’t even know there was anything wrong with me when I was told, and I even considered for him ending the marriage because it wasn’t fair to him. This all went through‑‑crazy things go through your mind. So I didn’t think it was fair to him, and his first wife had cancer. So the mind goes to crazy places.

Thankfully I did not. I shared, and he has been‑‑he has been by my side every step of the way probably much to his own physical health detriment, which is on track now. But he sacrificed a lot. He has been with me for every appointment. Every treatment he was by my side, every bone marrow biopsy. And thanks to him they redid some of mi tests which showed my genetic markers which they were not aware of as to how serious my CLL was.

He had read about that things could mutate or that tests only test a certain percentage of your blood and that perhaps it was different, and my symptoms were becoming more apparent that I was getting closer to treatment even though other things, other numbers did not show that through my FISH tests, my flow cytometry test. So he pushed them to redo the tests, and lo and behold, I was 11q, and they didn’t realize that. And IGHV they had known unmutated, but they didn’t realize the 11q. So I do suggest that people if they start seeing certain symptoms they do push for certain things, but my husband did that. I didn’t. I would not have pushed for that myself, so thank goodness I had a partner along the way, and I don’t think I could have done everything I did to be here today.

Esther Schorr:
If I’m reading all of you correctly, the relationship with someone else, a care partner, a caregiver, was additive for you.

Jeff Folloder:
Absolutely.

Jeff Brochstein:
Absolutely.

Esther Schorr:
And open communication.

Michele Nadeem-Baker:
Absolutely.

Esther Schorr:
Yeah. Because I know that we, Andrew and I, have spoken with patients where they really were reticent to share with the people closest to them for fear of scaring them, scaring them away, not knowing how they were going to react, so that’s a really important point.

The other thing I wanted to ask you all about was a few of you referenced having a wonderful medical team and finding a specialist and educating yourself. So finding the right doctor, educating yourself about the disease, what did that do for you? I mean, did it help you with just the emotional part of it? Did it help you feel more in control? Why was that a good thing?

Andrew Schorr:
Could I start, Esther?

Esther Schorr:
Yes.

Andrew Schorr:
So, first of all, Jeff Folloder mentioned about the doctor giving a hug and maybe it was probably Dr. Keating, but other doctors, Dr. Kipps down in San Diego gives hugs too.

I was‑‑put my hand out, and he said, no, I want to give you a hug, and he’s done that with you too, as Dr. Keating has. What it did by getting the right doctor is I think gave me, and I think you too, confidence. And this ties in to Jeff Brochstein as well. Confidence to go on with your life and at that age, earlier age, said go ahead and father a child, which is a big deal, right? That’s not just a short‑term thing. And I’d be interested in what Jeff Brochstein says, but I know you and I, Dr. Keating gave a hug and said, go have your baby, which here we were in a major cancer center. Go have your baby.

Esther Schorr:
And he’s 21 now.

Andrew Schorr:
Yeah, he’s 21 and he drives us crazy and we love him, but he’s our thirties, he’s our miracle baby. And, Jeff, you and Olga having the confidence to do that.

Jeff Brochstein:
Well, Andrew, a couple, I mean, we’d been trying for a while, and a couple of years ago a doctor told Olga and I that we had a better, almost a better shot of hitting the Powerball than we did of conceiving, and it kind of happened on its own a few months ago.

Esther Schorr:
That’s great.

Jeff Brochstein:
So it’s really a miracle. You know, I think what really found a comfortable place for me is I found a community oncologist who did have a specialty in hematology though he wasn’t a research specialist who has a great bedside manner, and he was also very cool with me going to MD Anderson and talking to Dr. Thompson and talking to a research specialist, and that gave me a good counterbalance. That gave me that second opinion. I could weigh that with what Dr. Stephen Szabo here at Emory was recommending, and I came up with what was best for me.

And Olga‑‑and us getting pregnant was just all the more of a present on top of that, so life is good in that regard.

Esther Schorr:
Any other comments on that? Jeff?

Jeff Folloder:
I’d like to chime in just a little bit. Andrew had mentioned Dr. Keating and his bear hugs and all that wonderful you stuff. One of our very first appointments with Dr. Keating, I felt the need, as many new patients do, to sort of like unload the guilt, all the things that I was doing that may or may not be exactly healthy, so it was sort of like a confessional.

And I can remember telling Dr. Keating, okay, you need to know that I smoke an occasional cigar, maybe an occasional briar pipe. And he asked me, well, how often do you smoke, and I said, ah, three or four times a month. And he said, okay. And I didn’t quite understand what okay meant. And then I kind of confessed, okay, you need to understand that most evenings I have a whiskey or two.

And he asked me what type of whiskey I drank, and he complimented me on my taste. And he actually stopped me and said, I am here to help you live a good life, not make you miserable. That’s where we were focused on. My first doctor just wanted to start treatment. Dr. Keating wanted me to live well, so instead of just getting a, quote/unquote, gold standard of treatment, Dr. Keating was focused on getting me the best treatment. So that was sort of my start to living well.

Esther Schorr:
Yeah. That’s how we felt about finding the right team for you, Andrew, was that. It’s what’s the quality of life and what are your priorities in your life and will your medical team‑‑is that what they’re focused on.

Andrew Schorr:
Right. You know, I make one comment about that, Esther, and I want to hear what Michelle says too.

So we’re blessed now with a range of‑‑a whole array of treatments, Jeff, you recently, Jeff Folloder led a town meeting in Jeff Brochstein’s home town recently where you spoke about that, that there are more treatments either approved or in research than ever before. So part of it is what’s your situation, and Michelle talked about unmutated and 11q, what treatment lines up with that clinically, but also what are your goals? Somebody who has FCR might be able to stop treatment after six months if it’s right for them and if it works for them. Some people may‑‑there’s some idea with Venclexta combined with Gazyva, maybe you’ll be able to stop after two years. With ibrutinib you’re taking it long term.

So what’s right for you? And I think all of us need to take a look at our lives, have a conversation with a knowledgeable doctor and state our goals. What are our personal goals for what works for us. Michelle, I mean, you may have things you want to add too.

Michele Nadeem-Baker:
Certainly. So when I went on the clinical trial I’m on, which some people know as IFCR, ibrutinib and FCR, I did not know at the time nor do I think they knew long‑term what would happen, but here it is. I can’t believe it. It’s three years this month I’ve been on it. I’ve been on ibrutinib for three years now, and I will be indefinitely until either it stops working or something better comes along, and I am able to live life. I am looking of course, as we all are, for a cure someday, and I’m still not MRD negative. That would be wonderful. That would be great. But right now I’m holding steady, and that’s a good thing. So my goal is to be able to live life as healthy as I can, and that’s what this is doing right now.

Esther Schorr:
Great. Well, so, I’m going to switch gears a little bit, and I want to ask you all a question. Have any of you dealt with a situation where you tell somebody what’s going on for you and they say, well, you don’t look sick. What do you say? What do you do when somebody says that to you?

Jeff Folloder:
A lot of smiling and nodding. It is a very common response. I think the two most common responses that we as CLL patients hear is, one, you don’t look sick, or two, oh, you’ve got the good cancer. Neither of these are acceptable. Yeah, I look good because I work at it. The whole concept of you don’t look sick, well, there’s a difference between looking sick and feeling sick, and as a CLL patient I take as much charge of my physical well‑being as possible. Before I was diagnosed with cancer I was a couch potato. I never exercised.

I didn’t need to. I was pretty lethargic and sedentary. Now I’m an avid power walker knocking out between 30 and 35 miles every week. I do it pretty fast, too. I’m trying to maintain my weight, and I’m trying to maintain my energy level. So, no, I don’t look sick. Sometimes I feel sick. I just did a week and a half on the road. I missed a bunch of naps. I’m a little tired. Actually, I’m a lot tired, and I’m looking forward to a nap this afternoon. And I’m going to take one, and it’s okay.

But this is part of my new normal. My new normal is the way I feel doesn’t necessarily show. And my wife understands that. My family understands that. The people close to me understand that. My doctors understand that. So if people don’t get it, that’s their problem, not mine.

Esther Schorr:
Any other commentary on that? I think that’s a great, very positive way of looking at it.

Michele Nadeem-Baker:
I have to say that I’m trying to look at the positives about people saying you don’t look like you have cancer. In other words, I feel like they’re trying to convince me I don’t have it because I don’t look it, but I guess I’d rather not look it than look it. That’s what I keep trying to tell myself. And as Jeff just said, I do smile a lot, it’s like, oh, yeah, you really don’t know what you’re talking about, but thank you. I know you mean it to be good and be nice. I also know people don’t know what to say. So I try to put the little sarcastic bubble aside and just try to think of that.

But as Jeff said you do have to‑‑you have to take charge. And I continue to, as Jeff was saying, I continue to work out in the way I do throughout even infusion. Continue to go to the gym and use weights and do cardio. And when the weather’s good enough up here, which it’s now turning to not be, do whatever I can outside as well as in the gym because you feel better.

And that is one way I felt I could take control when everything else was out of control health‑wise. So it also helped me in that way, in that respect as well as to be healthier physically. So it’s very important, I’d say.

Esther Schorr:
And really what you guys are all talking about is how do you stay empowered and positive. And for you, Jeff, it’s everything from power walking to taking naps, and for you, Michelle, it’s going to the gym and being an advocate. And Jeff, Jeff other Jeff, you’ve talked about some of the things that you do. And you’re going to be a lot busier with a baby in the house.

Jeff Brochstein:
That’s right.

Esther Schorr:
Anything else that helps you to stay positive in all of this?

Jeff Brochstein:
You know, I was always active for I don’t know 20 years before I was diagnosed. I’ve always lifted weights, done Cross Fit in recent years. So I spoke about this earlier, and this really kind of repeats some of the stuff that Michelle and Jeff were saying.

I’ve never appeared sick. I’ve always been physically fit. There was a time for about two years since I was diagnosed that I had some lymph nodes that went away once I started the ibrutinib. People never associated me with some sort of chronic or acute illness. And when I’ve told them what I have and I’ve told them about the condition, you know, I’ve also followed up with just trying to create awareness around this, send them some links, sending them some videos. Maybe sending them the original video I did at ASH last year, just to really create awareness around it. And it’s really up to them if they want to absorb it, on Jeff’s point.

Esther Schorr:
So, you know, I think to kind of wrap up all the things we’ve talked about, what advice do each of you have that might help someone who is facing a diagnosis of CLL in midlife? What lessons have you learned along the way that helped you face it?

You know, just kind of giving somebody advice, what would that advice be? And maybe, Andrew, do you want to start?

Andrew Schorr:
Yeah. I will say first given what we know about CLL and the range of things going on how, your life is not over. I thought my life was over. Here we are. I was diagnosed in 1996, or 22 years. I mean, I had no idea that I’d make it 22 months, right? And if you read some of the old articles and stuff you’d say, oh, life expectancy is not very long. So first of all, you’re going to live a long life and thank god for the medical research and the array of things that are available.

And I think Michelle said it too, right now, she’s been in a trial, she continues to take the ibrutinib, maybe there’ll be something else that she’ll need at some time and we’re confident that there will be. So, Esther, you remember that there was a guiding light, a patient advocate in CLL years ago when I was diagnosed, and she gave us two words as advice.

Chill out. And so that’s what I’d say. I’d say chill out. I don’t mean to be harsh. There’s a lot of grieving that goes with a diagnosis. I’ve probably said it to my friend Jeff Brochstein when we met in Atlanta last year, to you and Olga, but I would say that, and that’s based on evidence. That I’m living longer and people living a long time. And we get an eye into the research going on, and there’s a lot. So I think‑‑it’s not perfect. There are side effects, there are expenses, and there are course corrections in your head as well as in your life, but you’re going to live a long time. Believe me.

Esther Schorr:
Nice. Jeff B, any advice you would give to someone?

Jeff Brochstein:
Really along the same lines that Andrew just spoke and what Jeff had mentioned when he gave his intro. When you get CLL, when you get a diagnosis of this kind, god forbid, but when it happens during these years just take the what‑ifs out of your life. Take the projection out of your life because that will just make you grow worrisome and grow older and grow grayer. You really have to‑‑just to take things by the day. Just do your best early on to do as much research as you can about it. Try to see a specialist early on. I think that would helped me out my first couple of years if I would have gone to see a specialist as well as have somebody local and community‑based where I lived.

Reach out to people like Andrew, to groups like Patient Power. It’s a different world now than it was 10 years ago in terms of technology and information that’s out there. And I think most of all just keep tabs on the treatment landscape that’s changing every month it seems like or every six months something is approved, something new, something better, something not chemo related. Really, just pay attention to those things and you’ll be okay.

Esther Schorr:
Thank you. Jeff?

Jeff Folloder:
I would tell everyone that is recently diagnosed with CLL to do a couple of things. First, take a deep breath. I guess during pregnancy they would call that the cleansing breath, but you’re going to need to do a couple of them. So remember, that, Jeff, cleansing breaths.

Second, everyone has said it again and again and again. See a CLL specialist. You don’t have to see the specialist regularly, but you need to get a CLL specialist as part of your team. The landscape of medicine is changing not just monthly. It’s changing weekly, daily and hourly. One of the things my doctors keep on telling me the longer we wait the more likely we come up with something even better to treat you with. When I was first diagnosed we never heard the word “cure.” Now we’re hearing the word “cure” for some forms of CLL, and it’s getting better for lots of people very, very fast.

Make a few goals. I want to do this. I want to do that. Esther, you guys just saw Bruno Mars. Well, you saw him in a coffee shop. I’m going to go see him in concert this weekend. Why not? This is not a death sentence. This is just a part of my life. So I’m going to go do the things that I want to do, and that’s what I tell every single patient. At several of our town meetings I have made the point to remind people that statistics only look backwards. When you start looking at Dr. Google you’re going to see that the average life expectancy of a CLL patient is about six years. Well, that’s only looking backwards. I’m now nine years into it, so some people would say that I’m past my expiration date. I don’t look at that way. I’m living a great life. Every minute that I’m kicking, I’m kicking it for real.

Esther Schorr:
Thank you, Jeff. And, Michelle, any parting advice in this discussion?

Michele Nadeem-Baker:
That’s a tough act to follow.

Michele Nadeem-Baker:
So I would say the number one thing is to educate yourself and not just with as Jeff calls it, Dr. Google. Because if so you will get frightened by what it says because it does look backwards. But I would say to educate yourself as much as you can through credible sources, through current information versus past. Otherwise, you’ll get really frightened.

And the other thing is for those of you watching this, Patient Power generally has the leading doctors around the world for CLL on it. If you can get to one of those doctors that you see or one of the institutes, then that is a great source to go to to find out what is best for you to match you up.

If you do need treatment yet or not, projected time to treatment. And then if you can either go to whichever doctor that is, or in conjunction to what Jeff of Atlanta as opposed to Jeff of Texas is doing, pair that with your community doctor if at all possible so that you don’t have to travel. But that way you can be confident that you’re getting either in a clinical trial tomorrow’s treatment today or the best in treatment there is today. And there are so many out there.

The other advice I’d give, and someone gave this to me in my first week of diagnosis. Stay as healthy as you can today because there will be something to treat you tomorrow. And we’re all proof of that, all of us here right now.

Jeff Folloder:
Excellent advice.

Esther Schorr:
Yeah. Those are all such great advice, and you all are a delight and an inspiration to talk to. I feel very honored to be sort of in the middle of this circle of empowerment.

I want to thank all of you, Michelle, the two Jeffs and Andrew, for sharing your personal experiences as positive and very empowered CLL patients. It’s always inspiring to talk with each of you, and you provided some great perspectives and suggestions. And I want to thank our CLL community for joining us today and I hope that this conversation has been helpful to you. I’m Esther Schorr. Thanks again.

Patient Cafe® CLL – June 2018

Taking Back Control: How I Became An Empowered Patient

Patient Cafe® CLL – June 2018 from Patient Empowerment Network on Vimeo.

CLL patient and host, Carol Preston, leads a panel of 5 other CLL patients from around the country to discuss treatment options and living well with their disease.


Transcript:

Carol Preston:
Hello everyone, and welcome back to my favorite coffee shop, the Patient Cafe. This is our virtual coffee clatch to share information, not just from me but from many other patients who have been living with CLL, chronic lymphocytic leukemia, and they’re going to help their insights to support and to guide us for treatment options and living life well.

Again, I’m Carol Preston. I’ve been a CLL patient for 12 years, one relapse, in remission now since 2010, but, unexpectedly, I developed a second cancer, and I’m not alone in this because some of our coffee clatchers will share their experiences with second cancers as well, was diagnosed in December, a soft tissue sarcoma.

I have a quick update, very positive. My first set of post‑surgical and post‑radiation scans since I did the interview with Andrew Schorr‑‑by the way, it’s on the CLL website, Blindsided By a Second Cancer‑‑those scans were clean. Having said that I have seven more sets of scans to go over the next year and nine months, but fingers crossed that they will be clean as well.

I also want to share a wonderful piece of news since I did that interview, I became a grandmother for the first time. And I know on this panel I am not alone in joining that very, very happy club, but I get very excited about this little baby boy, so I wanted to share that good news with you. And really it just speaks to the importance of keeping one’s eyes on the prize. Because as I was going through a treatment for this second cancer I kept that little baby and its imminent birth in my head the entire time. So lots of good news on my end as well as from the panel from our coffee clatchers that you are about to meet.

Before I turn it over to them and introduce them I want to be sure that we thank the Patient Empowerment Network for its support. The program is produced by Patient Power. This program is not a substitute for medical help and guidance that you receive from your healthcare providers. This is really general information, that as I said at the beginning we hope and are confident will guide you to more informed treatment centers‑‑decisions, and become more empowered. And, in fact, that is what we are calling today’s coffee clatch, Becoming a More Empowered Patient.

We have a robust panel of people joining us around the table with their virtual coffee cups, Sue, Sherry, Catherine, Neal, and Dave, and I’m going to let each of them quickly introduce themselves, where they’re from, how long they’ve been living with CLL. And then from there we will carry on our conversation.

And, Sue, if we might start with you, then go to Sherry, Catherine, Neal and Dave.

Sue:
Absolutely. Good morning, everyone. My name is Sue Dudek. I live in Palm Desert, California. It’s going to be 118 today. Yeah. And, anyway, I was diagnosed with CLL. It’s been five and a half years. It was in January of 2013, diagnosed in a routine blood test. It became very aggressive. I went into treatment the following June, and I am now in remission, which is wonderful. Feeling great, and continue to do well, other than the fatigue.

Don’t know what else you want to know at this particular point. I would have to say that I was pleased to have found Dr. Kipps at UC San Diego, who is my physician, and I am 17p deleted, so that meant that I had to have some rather unique and different treatment approximate plans, but so far, so good.

Carol Preston:
And, Sue, I’m also 17p deleted, and to echo you, so far, so good. All right.

Well, let’s talk to Sherry. Good morning.

Sherry:
Good morning. I’m Sherry Gardener. I live in Fort Collins, Colorado. And I have known that I had CLL since 1999. I’ve probably actually had it since 1996. I’m fortunate to have one of the lower risk varieties. I have a 13q deletion, but I’ve had treatments off and on over the last how many years, 18 years or so. I’ve been in remission now for a little over two years. My last treatment was with idelalisib, and Rituxan.

I’m very fortunate that my hematologist is Dr. Clive Zent at the University of Rochester in New York, so I travel there three, four, sometimes more times a year because he’s a star and I figure we only have not that many chances to get it right.

Carol Preston:
Well said. Catherine?

Cathy:
My name is Cathy Shneck, and I live in the small town of Pine Grove, Pennsylvania. I was diagnosed in July of 1997, so next month will be 21 years for me. Probably what’s a little unique about me is I’m a registered nurse, so I went from being the caregiver to the patient, which is an adjustment for me. I have‑‑I’m on my fourth agent currently. I had FCR, and then I was tried on ibrutinib, which I failed because of bleeding issues. And then I did obinutuzumab, which had no effect.

So I’m currently in a Phase 1 clinical trial at Penn in Philadelphia, an oral agent, the next Btk inhibitor, and so far it’s been working. I am not in remission, but I’m controlled.

Carol Preston:
That’s good news and persistent. And hopeful news.

Cathy:
Yes.

Carol Preston:
Wonderful. All right. And then rounding out our clatch this morning, Neal, and then Dave.

Neal:
Good morning. My name is Neal Rosen. I live in San Mateo, California, which is on the peninsula south of San Francisco. And I was diagnosed just about three years ago, I think in about a week or so, so happy anniversary to me. I had a pretty quick onset of the disease, and so I started chemo within about a month of diagnosis, went through five or six rounds of FCR, and at this point am in remission.

Carol Preston:
That’s great news, and we’re going to hear more about your empowerment moments right after we hear from Dave and say hello to him.

Dave:
Hello. I’m Dave Weisler from Metamora, Michigan. I’m been‑‑I’m 11q. I’ve been in two clinical trials. The first one was with lenalidomide out in Buffalo, New York, and the second one was at Ohio State, and it was for three treatments. It had obinutuzumab, Revlimid‑‑excuse me, ibrutinib and then finally venetoclax, and I’m MRD negative.

Carol Preston:
Fantastic news. That’s the news that we’d like to hear. All right. Well, you’ve met our wonderful panel sitting around our virtual coffee table today, so now let’s get the conversation going. First of all, what I’ve picked up from these introductions, a couple of things. Number of you have been on several treatments, and the other thing that I picked up in terms of being empowered patients is that you wasted little or no time getting to major medical centers and not relying necessarily, necessarily on the first oncologist with whom you met.

That was my situation back in 2006. And, you know, I can say I probably wasted a little bit of time because I wasn’t a very knowledgeable or empowered patient, and sometimes we learn by trial and error. So what I’d like to do is to go around, and you can all pick up from each other. And, Dave, we’ll start with you this time about basically an ah‑ha moment to become empowered. You haven’t been suffering‑‑well, when were you first diagnosed? Tell me again.

Dave:
Eleven years ago.

Carol Preston:
Yeah, 11 years ago, so you’ve been on a few regimens. So tell us about how you became more knowledgeable and empowered.

Dave:
Well, if I had listened to my local oncologist I’d died about four years ago, and so back then he said all we have is a cocktail for you, they called it. And so I started looking into it, and I said, no, there’s got to be something better out there. And I found a website called CLL Forum, and I it had a lot of the people that were in the same boat I am looking for the new treatments.

And that’s where I found the one out in Buffalo, New York, and that lasted about three and a half years. And then, still reading, I found the one at Ohio State, which was the three‑drug treatment that I really, like I said, I was‑‑in seven months I was MRD negative, and at 14 months I was still MRD negative in the blood and the bone marrow. And I haven’t been on treatment for a year and a half.

Carol Preston:
That’s such fantastic news, and as you now know Ohio State is one of the premier medical centers for treatment for CLL.

Dave:
Oh, absolutely.

Carol Preston:
So your research got you to the right place in the Midwest. Neal, since becoming an empowered patient, I know you’ve only been living with this, long enough certainly, but for three years.

Neal:
Well, I was fortunate, if that’s the right word, to have a very good friend here who had been diagnosed about a year and a half or so before I was, and although he has not yet undergone treatments, he did a lot of due diligence. And so he was able to turn me on to sources of information including Patient Power.

And, you know, I have to say that before I was diagnosed I probably couldn’t have told you‑‑given you ten words about leukemia. I just didn’t really know much about it other than it was a blood cancer. And I think, you know, I was referred to my oncologist by my primary care physician, who I trust a great deal, and I did get a second opinion at Stanford. My primary care physician is with California Pacific Medical Center in San Francisco.

And, you know, I read as much as I can and keep on top of things as best I can, and I think, you know, you really have to as a patient you have to do that.

Carol Preston:
And, Cathy, did you have a similar experience are or‑‑you’ve had quite a road. You’ve had quite a path over these last 21 years.

Cathy:
Yes, it’s been a long time. Well, my diagnosis was by accident, or I shouldn’t say accident but I went in for a GYN procedure. They found it on my pre‑op blood work. And then I was referred to a local oncologist that I had a really bad experience with, which I won’t go into. I’m actually on my fifth oncologist now.

I was going to Penn State Hershey. In fact, I still go there. That’s my local oncologist, and he got to the point where he didn’t know what to do with me anymore. He was out of options, so he‑‑we have a very collaborative relationship because we were both medical professionals so he talks to me very respectfully and includes me in all my decisions, and he told me to do some research, look for a CLL specialist, which I did. I narrowed it down to two and then took those recommendations back to him and one of the ones that I had chosen was one that he wanted to recommend, so that’s how I ended up at Penn.

Carol Preston:
And Penn, you may know, is doing leading research on this CAR‑T cell therapy, which doesn’t involve meds at all‑‑

Cathy:
Right.

Carol Preston:
‑‑but reigniting our immune systems in certain ways. Still in experimental stages. So, obviously also plugging and plodding ahead to get the right treatment from the right center or facility.

Cathy:
Exactly.

Carol Preston:
And Sherry, how about you?

Sherry:
Well, I used to be an RN as well, Cathy, and I speak the language, and I think that that gave me a head start in becoming what we are calling a powerful patient. You know, you can recognize quality when you’ve been a nurse, and you can also recognize the opposite, and I had a few false starts.

And, finally, some of you will remember Chaya Venkat, who was so helpful to many of us in the early days of CLL with her online forum. She suggested, she met Dr. Zent up at the Mayo Clinic, and she said, you know, I think he’d be a really good fit for you. And so I started seeing Clive at the Mayo, and saw him there for 10 years. And now have been‑‑he moved over to the University of Rochester to be the director of the CLL treatment and research program there, so now I go to Rochester to see him.

Carol Preston:
From Denver. From Denver, right?

Sherry:
I fly from Denver, yeah. I’m spending all our children’s inheritance.

Carol Preston:
That’s all right. My supervisory doc was at MD Anderson. I live in Maryland, half way across the country, so I feel your inheritance pain there.

Sherry:
Our kids will have a few things left like maybe some dishes, I don’t know.

Carol Preston:
They would rather have you than any inheritance. Anyway, keep going. Sorry about that.

Sherry:
I’d rather have them too.

I can’t emphasize enough the importance of education, self-education. What I have found very helpful in learning about CLL are some of the Patient Power forums with the experts, the interviews with the experts. In fact, one of those led me to a physician in Denver who I will see locally if I need to for emergencies if I can’t get out to Rochester. Dr. John Burke, and he’s terrific too. So education is really important.

I think it’s also important to be aware of the sources of our education. There are some folks on some of the online forums who like to play doctor, and I think it’s‑‑it can be fairly easy to tell what’s good information and what you might just pass over.

I’ve also found exercise to be really important. I was diagnosed serendipitously the day before I was scheduled to do a triathlon in 1999, so I was in really good shape. But I had this little pain, you know, in my sternum the day before, and I thought, oh, I don’t really want to have a heart attack during this triathlon. That would be so embarrassing. And so I went to the emergency room, and it was found on a CBC.

The young cardiologist came into the room after some wait, and she looked about 12, and she said, you have CLL, but don’t worry about it. Oh.

Carol Preston:
Freak out, right?

Sherry:
Thanks for sharing. So I was in really good shape then, and I found that continuing exercise has been one of the best treatments both for anxiety and also for keeping this body in pretty good shape.

Carol Preston:
Yeah, I have to second that as far as‑‑and also getting‑‑mentally getting the endorphins flowing, keeping the energy level up. And I have a feeling that that’s not just you and me, Sherry, but some others on the panel as well.

Sue, could you share with us how you got‑‑how you got into this coffee clatch with this morning, this afternoon?

Sue:
Absolutely. When I was first diagnosed, again I mentioned it was just through routine blood work, and my family physician said, you know, you’re either really, really sick with an infection or you have leukemia. And he said, you look too healthy to be having a really bad infection.

So he referred me to a local oncologist, and they started monitoring me. And during this time I was really quite ill, and it was progressing very, very rapidly, the white blood counts, everything. And this was from February until the first of June, and I went to see the oncologist, and he said we need to start treatment right away. We’re going to put you on FCR.

And I for some reason decided, I said, would you please give me a couple of extra slides of my blood work. And he did. He said, yeah, I’d be happy to. What are you going to do with them? And I said I’m going to send them to a friend of mine who is a CLL research‑‑he’s a blood cancer researcher at the Huntsman Institute in Salt Lake City. And I sent them to him.

He immediately wrote back and said, do not start treatment. Get a second opinion. He said you are‑‑I don’t know if you can get in to see Dr. Kipps, but he’s the best one close to you. So I cancelled my appointment to start treatment. I called down to the UC San Diego in La Jolla. I said they want to start treatment, and they said, send us all of your paperwork. I sent a fax, and within 45 minutes after I sent the fax I got a call, and they said, the doctor wants to see you next week.

Carol Preston:
Wow.

Sue:
Yeah. He wants to see you next week. So off I went. It’s about a two hour lovely drive from Palm Desert to La Jolla, which is even prettier. And so I went down there and am seeing Dr. Kipps. He immediately started my treatment with apheresis. Because my spleen was so enlarged, he was very concerned about tumor lysis syndrome. So my first step was to go back down to the hospital and spend the day having the apheresis where take your blood.

Carol Preston:
Yeah, would you explain what that is for us?

Sue:
Well, it’s kind of‑‑they take all your blood out of one arm and put it back in the other, and it’s kind of like a dialysis except they put it into a centrifuge, and that spins out the white blood cells because they’re heavier, I believe heavier than the other blood cells, and they were accumulating in a bag‑‑although they’re not white, they’re pink. I will tell you that right now. And they were accumulating and it took‑‑it was about a six‑hour process, and they‑‑

Carol Preston:
So, Sue, if I may jump in.

Sue:
Yes.

Carol Preston:
So good news is that you did push for that second opinion‑‑

Sue:
Absolutely.

Carol Preston:
‑‑including slides to a researcher in Utah who directed you to again another premier center, UCSD. Dr. Kipps is famous, world famous for his research in to CLL. And that’s what I’m hearing from all of you.

One of the questions that I’d like to ask‑‑and anybody can jump in. I don’t want to feel as if we just keep going around the table, is this pushing through beyond the diagnosis. Because I know for example when I heard the word leukemia, you know, for me that was a death sentence, before I knew anything. It was totally out of the blue for me, totally unexpected, and like everyone else scared to death, frightened. And to actually‑‑went to the oncologist referred‑‑to whom I was referred, took that oncologist’s word that this was what I needed to do. Was not an informed patient, was not empowered by any stretch.

And so I’m wondering how all of you, and for those of us watching and listening, would like to know how do you push through that diagnosis? How do you tamp that initial fear and panic to get to the next step, which is to seek another opinion, which is to just take a breath and say, I can wait another week or two or three. I think all of you have something to contribute along those lines, please, just jump in and let’s hear about that.

Sue:
Well, if I would‑‑I could go. I’m one of those that I immediately got on the internet. I mean, literally from the first time I heard from my doctor I got on the internet. I started researching it. I called my mom, and I said, mom, does anybody in the family have leukemia. She couldn’t recall that, so I figured at that point it was probably not hereditary.

So I just really started digging in. Maybe that’s me. I was a researcher in my background, so I just started reading everything I possibly could about it.

Carol Preston:
Okay. So that’s one way. Of course, a lot of times people feel intimidated. There’s so much information on the internet, thousands and thousands of pages, so all of you seem to have waded through that.

Neal, what about your experience?

Neal:
Well, as I said earlier, I had the good fortunate, again if that’s it right word, of having a good friend who had been diagnosed, and so he was able to share some of his insight. I also had a friend who actually was one of the first patients treated with Gleevec for AML, and he’s very close to Dr. Druker, and so he was a good source of information.

And again, you know, I spent a fair amount of time doing the research on my own as well, so I had several different avenues, if you will, of ways to get more educated.

Carol Preston:
Getting on the internet and doing all of this research has been described sometimes as drinking from a fire hose with many of us feeling we need to absorb information. It’s the equivalent of getting an M.D. in the space of one, two or three weeks.

So, Dave, how did you push past that?

Dave:
Well, first of all, I didn’t‑‑I had trouble with my oncologist’s diagnosis that I had seven years and that was about it. Three trials of FCR I assume, and I just couldn’t, I couldn’t see myself there. And I’m a school teacher, so we’re used to researching. And I first went on and looked at all the different websites. Obviously, Patient Power was one of them I looked at and did some research. There’s a place also called PubMed. I don’t know if you’re familiar with it.

Carol Preston:
Yes.

Dave:
Okay. It’s all the research being done. So I went there and looked on what was going on, what were the trials, what were the results. I’m a statistician, so I could read the research, you know, and the probability. And that got me going. And then, like I already mentioned, that one place has a clinical trial place where I saw other people.

And I go, no, that clinical trials is where it was at. This was not just go find an oncologist with FCR. Like I said, he gave me seven years and I just couldn’t‑‑that was just not the right place for me. So I did a lot of research and found that