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Patient Café 2016: Staying Positive Online

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Published on November 1, 2016

How do negative messages you read on the Internet affect you?  Do they make you more fearful of your diagnosis?  Patient Power founder, Andrew Schorr, leads an online discussion with other CLL patients and care partners, to learn ways of coping with potentially negativity comments.  Learn how to frame your own life in a positive way and to get perspective on your own path to health.

Sponsored by the Patient Empowerment Network through educational grants from AbbVie and Genentech Inc.

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Transcript | Patient Café 2016: Staying Positive Online

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:

Now, I want to talk about something that’s come up on some of the different chats and groups over time. Sometimes people get negative. I used to, all the time when I was first diagnosed, go to that ACOR list. And I, fortunately, got treatment. I was doing pretty well. And I saw a lot of people who would post when things were not well. And it kind of brought me down, because I thought, gee, this one is talking about a problem. And that one is talking about a problem. And that one is going to have a problem. Isn’t anybody doing well?

And I really worried about it. So, Patrick, have you noticed that on any of these groups? How have you taken the temperature of the community? Because I wonder sometimes are people posting when things are not going right? 

Patrick:                 

Well, I would say I’m on every day. And I’m reading or I’m skimming the major ones. And today, it’s you and CLL Society. I very rarely would go to Brian’s present blog unless you referred me. And then, probably the ACOR listserv and the one that ends in .io. Those are my four sources. But I do know they’re more problem oriented. For a long time, I also would go to people’s personal blogs. But they were very sad. Some of them died. And I, myself, figured I had to frame my own life in a way that was more positive. And so one of the questions, and some I’ve always considered a little bit too trite to host, but I went fairly long.

In fact, it really wasn’t until I was treated last year that I understood that the disease and the treatment impacts on your immunity and immunity measures. And I have been surprised, maybe there is no answer, at how little information there has been about things that you might be able to do yourself other than physical exercise to enhance immunity. And that’s always seemed to be that could be a positive and also, technically-oriented discussion. But I haven’t found it.

Andrew Schorr:                  

Mm-hmm. Stella, I want to ask you, so, obviously, as a spouse, you worry about Len. How many years have you been married, by the way? They’re looking at each other. What’s the answer?

Stella:   

Seventeen.

Andrew Schorr:                  

Seventeen years, okay. So you worry about Len, of course.

So you see some of these posts and things like that. How do you stay positive? Because, often, people are saying there’s an issue. Can you help me? There’s something that’s not going right. So how do you filter what you see?

Stella:   

I think, for me, because we’re old-timers at it, is having perspective of that there is going to be down times, and there are going to be up times. And that my philosophy is that we’re buying runway. That if we get two years out of a drug, that’s great. But it’s good to know there [are] only two years because, initially, I thought, okay, your blood is good. It’s going to stay that way for a good time. And I’m kind of resonating to what you said in that your bloods have been okay for about 20 years.

And it just kind of whacks you in the head and says, now, we have to look someplace else. But what I try to do is look at what are the trials. And that’s why we keep up on the trials. And our philosophy is it doesn’t matter where the trial is. We’re going to go where the drugs are and the trials are. And we’re going to buy that runway. We’re going to continue to look for life. And that’s what’s most important. So I think it’s more philosophical than technical.

Len:        

I know who is the person that peps her up the most and that’s Dr. Furman.

Andrew Schorr:                  

Great. And we’ve had him on Patient Power a number of times. And I’ve met him. He’s very devoted. And I have to tell you, having been with Dr. Kipps yesterday, Dr. Furman, Patrick mentioned, really, I should have named my kid after him, Michael Keating, because he told us to have a third child.

And some of the others, Dr. Weirda you mentioned, we have a great group of CLL specialists. Patrick, I’m so sorry that you’ve had this experience with the local oncologists, and some of us have, where there’s been a disconnect or resentment. And so, Lisa, though, you are a big proponent of people taking on the power. So, Patrick, he had a doctor who kind of resented that he was doing that. And you, yet, counsel people that they can be in control, right?

Lisa:       

Absolutely. The need for the disease, getting—there are ups and downs all the time, is getting through the hurdles. And I’ve been through enough hurdles and gone through enough of those hurdles, I can recognize where patients are at. And I can give them—I can reinforce them with hope and certainty that they’re going to get through this, and they’re going to come out the other end okay.

And sometimes, that doesn’t happen. But I can usually tell. I’ve been doing this for a long time when things aren’t going well. And I don’t take ownership to that, because I’ve learned that to accept my disease. And it’s just the nature of the disease. And the important thing is to have good support, your doctors, and have a counselor that you can talk to.

Andrew Schorr:                  

Patrick, I don’t know, do you have an outside counselor, or do you just counsel yourself being a clinical psychologist?

Patrick:                 

My wife is a social worker. And so we certainly work things together. But beyond that, no, I don’t have that here. And I’m not sure exactly how I would.

It’s hard when you’re a psychologist yourself, because you have so much data. But it’s so different when you’re going through it yourself. You go through the stages of the grief process also. And it’s nice to have someone else to help you get through those stages.

Andrew Schorr:                  

Well, you’ve been that for so many people. I want to say, I’ll just give you an example, so I told you I met people at the clinic the other day who recognized me from being on videos. And one fellow was diagnosed six months ago. We can experience this. He had lymph nodes out to here, large spleen, fatigue. He’d been on vacation. He developed an infection. He was hospitalized, etc. And now, he’s at a decision point about treatment. Trial has been recommended. He said, Andrew, can we get together? Now, we live not far away. And maybe before the week is over, we’ll get together for lunch.

I, again, am not a doctor. I can’t say I can just help him, and you probably do this, Len and Lisa, too, how to process information. But in the end, he’s got to make an informed decision. But that’s been cool for me, in a sense, being exposed to or even with a post that I did years ago on the Internet, and then, meeting people in person. So I’d never met Len in person until I saw you in New York, right, Len?

Len:        

Right.

Andrew Schorr:                  

But that’s cool. It’s like here we are. Or Lisa was just up the road from me when we lived in Seattle. And it’s kind of like a great connection when you finally get in person. So you don’t really have that in Los Cruces. I get it. But now, people are going to see you, Patrick, on this program. And then, you’re going to go to San Diego or go to San Francisco, wherever you go, and there will be some CLL event. 

And they’ll say there’s Patrick. Let’s have coffee. So I know it’s been enriching for me.

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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