CLL Patient Café: Tools for Facing a Mid-Life CLL Diagnosis - 2 | Transcript | Chronic Lymphocytic Leukemia | Patient Power


CLL Patient Café: Tools for Facing a Mid-Life CLL Diagnosis

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. 

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 my 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 venetoclax (Venclexta) combined with obintuzumab (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. 

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Page last updated on June 10, 2019