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Finding Support After a CLL Diagnosis

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Published on March 3, 2020

Key Takeaways

“It’s comforting to know there are other folks going through the same thing at the same time,” says chronic lymphocytic leukemia (CLL) patient advocate Al Hollis, explaining why he became an active member of a local support group after receiving a CLL diagnosis.

Al is joined by his wife and care partner, Teresa Hollis, and by CLL patient advocate Lee Swanson, who took a different approach when seeking support after his diagnosis. Watch now as they discuss this important topic and offer tips for finding a local CLL support group.

This program is sponsored by AbbVie Inc., Genentech, Inc. and Adaptive Biotechnologies. These organizations have no editorial control. It is produced by Patient Power, and Patient Power is solely responsible for program content.

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Transcript | Finding Support After a CLL Diagnosis

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.

Al Hollis:                               

There’s a local CLL support group; and from a personal perspective, I’m not a joiner, doing something like that was not really of interest to me, until I needed to get interested in it. And once involved in the local support group, I found an immense amount of support, immense amount of information, and a lot of comfort in knowing that I’m not the only one going through this. 

I’m not the only one feeling at the end of the day that you just, when you hit the floor is there any lower than going below the floor? Because you’re so tired and you’re so physically exhausted, it’s comforting to know that there are other folks going through the same thing at the same time.

At least Carrie is here in the audience, she’s some local folks, for your international audience look for, if you can find one, a local support group. It’s amazing what you can learn, it’s amazing what you can do, and really in essence, and I’ll go back to what the docs were saying a while ago; knowledge is power, but understanding is superpower. 

When you begin to understand what’s going on with you and what’s going on around you and with the team you’re working with all of a sudden, it turns a black-and-white world into color. So, that support group helps; and obviously, the docs help too, but really reach out to your local support groups, because they can just be absolutely awesome for you.

Carol Preston:                          

That’s a great tip. I never did a support group; you didn’t do a support group? Or did you?

Lee Swanson:                             

I did, not religiously, but there is a group through UCSD that meets monthly, and it was hard to go to when I was working, because they’d meet a little bit too early in the day. But I went to as many of them as I could, and I haven’t in some time now.

Carol Preston:                         

It’s interesting you went off the pill. Hmm. That’s something you used to say, never mind—when you no longer had to take venetoclax (Venclexta), it’s as if you don’t have CLL and maybe this support group...

Lee Swanson:                            

...well, in a sense, I mean it’s like I say, it’s still in the back of my mind; but I think that I figured out what I’m doing with it, and what it’s doing to me and where we’re going here.

Carol Preston:                          

And, of course, the flip side of that is for those of you, for those of us if we are on an oral medication if we reach that heralded day of going off, not needing it anymore, is it possible that we can help others? So, that’s something to think about too. And, Lee, that’s what you’re doing right now. You mentioned that you were in television; you were a news producer for 30 years; so, outside of your wife and your kids, how did you handle that? Because you needed to travel all over as well.

Lee Swanson:                             

No, I was in local news I was pretty much at the station, and I—so no, I wasn’t traveling at the time particularly. But I let people at work know, they were in the same boat I was; what is this, and what are you talking about? Hmm. And so, we’d have those discussions, but generally they were just—just want to know how I was doing. And you have those two discussions; you have the people you meet in the hallway and go, "Hey how are you?" "Fine," and you’re crossing in the hallway, and all they want to hear is, "Fine, how are you?" And then you have people who say, "No how are you? Really!" And that’s what matters.

Carol Preston:                          

Yeah. I’ve had it before as well. Teresa?

Teresa Hollis:                        

Speaking of that, Alan’s immediate supervisor, he told him because of the time that would be required to go for treatments, and it wasn’t very long after that that he came home and told me that his boss wanted me to join the two of them for lunch. And I thought, "He’s going to cut him off, he’s going to cut us, we’re done!"

And I went in there to sit down with him, and it was so sweet, he said, "I just want you to know that I want you,"—talking to me—"I want you to know that whatever he needs, we’re there; if he needs to go part-time, whatever, and if he’s not doing what the doctor says, you call me and tell me." And I thought how special; what a great boss to have in a time like that. It was really one of our best memories from that time period.

Carol Preston:                         

And Al you’re retired now?

Al Hollis:                               

Oh, no.

Teresa Hollis:                        

Still working, same great boss.

Al Hollis:                               

Same great boss, I wouldn’t give him up.

Carol Preston:                          

Oh, that’s terrific. That is terrific. So, you mentioned about finding a support group. What is the best way to find a support group? Because sometimes you can Google CLL support, it may not be there. So, what is the best way to do that?

Al Hollis:                               

I think, and Elise correct me if I’m wrong, I think I found it through the CLL Society. That it was the connection there; and there’s a way to window through there and find your local group, and it posts meetings and contact information and things of that regard, so it actually started with that particular website, and then we were able to make contact. And at that time, when I was first diagnosed; the meetings were a little bit more sporadic, they’ve become more consistent, she’s done an exceptional job of keeping good continuity, and good locations, so we can attract the entire metroplex. For those of you who are international, you don’t realize—I can drive for three hours and still not be out of the metroplex sometimes.

So, it’s a large place and trying to find a meeting space that’s reasonable; she’s been able to do that. But once you find that support group you should be able to tap into that and really sincerely take advantage of it.

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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