CLL Patient Café: Tools for Facing a Mid-Life CLL Diagnosis - 3 | Transcript | Chronic Lymphocytic Leukemia | Patient Power


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

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 mid-life?  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. 

Jeff Folloder:
Sorry. 

Michele Nadeem-Baker:
You just said kicking it.

Andrew Schorr:
You should have a shelf life of 25 years, you know, I mean. 

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. 

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

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Page last updated on June 10, 2019