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David’s Story: Taking Back Control During Watch and Wait

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Published on July 10, 2018

For some chronic lymphocytic leukemia (CLL) patients who don’t require immediate treatment, the watch-and-wait period turns into “watch and worry”. The anxiety-causing questions like: "When will I start treatment?" or "How long will this go on?" can become a source of depression upon diagnosis. How can patients take back control during this time of uncertainty? On location at CLL Live in Niagara Falls, patient advocate David walks through his diagnosis, how he came to terms with his condition, and ways to enjoy life again. What is one thing he stopped doing? Watch now to find out.

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Transcript | David’s Story: Taking Back Control During Watch and Wait

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.

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

Andrew Schorr:

Hello there. Andrew Schorr in Niagara Falls, Ontario, Canada with David Pigott.  And, David, you're from Canada.  

David:

Yes, I am. 

Andrew Schorr:

Where?   

David:

New Hamburg, Ontario, near Stratford.  

Andrew Schorr:

Okay.  So David is a CLL patient like me, but his story is a little different.  So, David, tell us about your diagnosis and your status now.   

David:

Well, I was diagnosed almost by accident.  I was doing some gardening and pulling out a sapling, popped a blood vessel, went to the doctor about it, and she found a lump.  After a needle biopsy and a resection, they found CLL, SLL, and then did a bone marrow, confirmed CLL.  

Andrew Schorr:

Okay.  So this was three years ago.  

David:

Three years ago.  

Andrew Schorr:

Okay. You've had no treatment.  

David:

No treatment. 

Andrew Schorr:

Here you are it at this conference of about 300 people.  You were telling me you look at our Patient Power videos.  

David:

Yes.  

Andrew Schorr:

Thank you very much.  So how have you been taking back control in this, some called it watch-and-worry time? 

David:

I spend a lot of time researching, understanding the disease, because knowledge is power. And I feel that the more that I learn and the more I know, it gives me the feeling of control, even though the disease is uncontrollable.  

Andrew Schorr:

Okay.  So you watch our videos, and you start off, like, hardly knowing what is this thing, CLL, chronic lymphocytic leukemia. How is it a cancer or different from other cancers?  You start knowing nothing.  

David:

Yeah.  

Andrew Schorr:

And being scared, probably, right?  

David:

Right.  

Andrew Schorr:

How you and your wife, how did it affect you when you were diagnosed?  

David:

Yes, well, initially you are told you have monoclonal B cells, and you wonder what's a B cell, and is monoclonal good or bad and from that point of view.  So then you go through the tests, and you do a little bit of research, and then they tell you, yes, you've got CLL.  You're stage IV.  Wife was in tears, because stage IV in a solid tumor is different than stage IV in a blood cancer, not that it's great, but it is certainly different. 

And, again, okay, so when do we start treatment?  And then you get told, well, you're not going to get—you're not going to start treatment.  Well, you are being treated, but you're being observed, not treated, and that's very different.  I've lost a brother and mother and father to cancer, and, you know, you always think right away I've just got to go out there and beat this thing.  It's a real mindset change.  

Andrew Schorr:

So with the CLL inside you, hopefully kept just staying at bay by your own immune system maybe, how do you feel?  How do you go about your life?  You were tired.  Now can you still be positive and go about your life even though you're in this watch-and-wait state?  

David:

I think that, first of all, the diagnosis convinced me to retire, because you sit there and say you don't know what's ahead, so let's really enjoy life. Because for so long you put things out, you procrastinate, and so now we don't procrastinate.  We travel a lot.  We spend time with our friends and family and do things that we probably wouldn't do at the same frequency as before.  So live your life well now.  

Andrew Schorr:

I like to say when people invite us to dinner or somebody says go on a bike ride or let's consider a trip, for me the answer is always yes. 

David:

Yes. 

Andrew Schorr:

Always yes. You don't know about tomorrow. We're doing well.  I've had treatment.  You're doing pretty well now, but who knows what life—and who knows when you're going to get hit by a truck, right?  

David:

Exactly.  

Andrew Schorr:

So, you know, we can be so caught up in the cancer diagnosis we have, but it could be something else.  

David:

Yes.  

Andrew Schorr:

Could be something else.  

Andrew Schorr:

Well, David, I want to wish you well.  And one last thing is you've come to this conference that's about every three years here in Canada.  What you do you get out of connecting with others?  

David:

Oh, I get a lot. I'm on the board for Lymphoma Canada southwest chapter, and so I want to stay current in what's going on, being able to talk to people at chapter meetings.  And I met people, sat at our table that live two blocks away from where we have our meetings, had no idea about the meetings.  Now they're coming to the next meeting, and so that's great.  

Andrew Schorr:

You're not alone. 

David:

We are not alone. 

Andrew Schorr:

You're not alone, and now we have this digital connection really across all cancers for common issues, and often even for very uncommon cancers, for specific cancers for people worldwide we're dealing with the same thing and at different stages. I'm at one stage.  David is at another.  David, thanks so much for being with us.   

David:

And thank you for everything you do for the patient population.  

Andrew Schorr:

And wish you well.  In Niagara Falls, Ontario, Canada, with my new Canadian friend, David Pigott, Andrew Schorr.  Remember, knowledge can be the best medicine of all.  Right?  

David:

Yes, absolutely.

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.