Getting the Right CLL Care Team for You: Advice From Survivors

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Topics include: Living With Chronic Lymphocytic Leukemia

How can chronic lymphocytic leukemia (CLL) patients choose the right provider? Why is it important to see a specialist? Patient advocates James Miller and Carol Preston share advice for others seeking a knowledgeable, confidence-building healthcare team to treat their CLL. Watch now to learn more. 

This program is sponsored by Pharmacyclics. This organization has no editorial control. It is produced solely by Patient Power.

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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:

So, let’s talk about having the right team. James, you referred to your relationship with your doctor down the road a couple of hours in San Diego, and that you have great faith in him and the team there, and Carol, you referred to—with your other cancer you developed—how you sought out a major center—in your case, Johns Hopkins—to get a team that you really felt good about. 

So, James, what would you say about somebody really seeking out a team that they feel good about that’s knowledgeable in CLL? Carol, I’m going to ask you too—about getting the right team.

James Miller:            

Absolutely critical. When I was first diagnosed back in 2005, I was referred to a local cancer doctor at a cancer center, and I asked him—because I’m not shy—“Well, do you just treat CLL?” No, he kind of—he said, “No, I treat this, this, this, this.” He rattled off 10 different types of cancer, and that was exactly the wrong answer for me.

I wanted somebody who’s a specialist, and I also wanted somebody who’s attached to a teaching hospital, somebody who’d be familiar with the drugs coming down the line, who could potentially get me into trials or whatever. I thought of all of that right up front, and before I had the 17p or anything, so I just went online and put in “world’s best CLL doctors.” Three names came up, and one name was in La Jolla. I asked my local doctor for the referral, he said “Sure,” and then I’m down in La Jolla the next couple weeks, and never regretted that decision.

Andrew Schorr:        

Actually, I just did a check. Probably, in the blink of an eye, Dr.Jain’s namewill be on the—we’re waiting for that. Carol, what would you say to—certainly, many people are treated in the community with garden-variety, newly diagnosed CLL, and now there are oral therapies that may be prescribed—I don’t wanna say like a blood pressure medicine, and you have to be monitored. Like Dr. Jain was saying, make sure everything is going right. But, when it recurs or recurs yet again, maybe it’s a little different story. What would you say about having the right team?

Carol Preston:           

I’m gonna talk about that in a few seconds. I wanna piggyback on something that James said about skin cancers because one of the things about which I felt I was very vigilant because melanoma is always a very scary potential by-product of CLL, and that’s what I was warned about, so, keeping covered, slathering the SPF high number on, wearing hats, not sitting in the sun, and, boom! I got a sarcoma. So, we do need to be vigilant. Skin cancer is definitely a very prominent byproduct, but other things can happen too.

I can’t emphasize enough—and, Andrew, you’ve heard me talk about this before, and I think some of your viewers have too—about the importance because I started on the community level. I wasn’t as smart as James when I was originally diagnosed. I was so anxious to get started with something, and I was so far along with the CLL by the time it was diagnosed—stage IV— and I will say that stage IV in CLL, thank goodness, is not the same as stage IV in some of the other cancers. 

But, stage IV—I just said, “All right, whatever you got. Let’s get started.” And, I was four cycles in of this older regimen before I got to MD Anderson, before I found that name and got to MD Anderson, and of course, I was already four cycles in and was told, “You’re doing really well. We don’t see anything. Finish up with what you’re doing.” But, when I relapsed, the first place I went was back to MD Anderson, and that was how I found out about the pathology with the 17p, that it was only 4 percent of the cells as opposed to full-blown, and that I could do the FCR, which, at the time, was the gold standard of treatment.

So, I can’t emphasize enough the importance of that, and I think the key takeaway is James did it the right way. He took a breath, and he found out what he needed to know. Of course, James, you were on watch and wait for several years, so that helped, but I had to get—I would have had to get treatment under any circumstance. But, people—it’s hard to do, it’s very emotional. Andrew, I’ve heard you say we all try to become medical experts, drinking from a firehose.

If you can just take a breath, take a couple of days, figure out who that specialist is, and even if it’s just to get one consult, even if you feel “I live to far, I can’t do the transportation, it’s a hardship for me, I can’t take off work”—even just to get the one CLL specialist consult, because the specialists very much—and, Dr. Jain, I think you would verify this—want to work with the community oncologists. Dr. Jain, you can’t possibly see every CLL patient in the United States. You would never go home, correct?

Dr. Jain:                     

That’s correct.

Carol Preston:           

And, I was told that the vast majority of patients come for consult, and that the specialists are very willing—and, that’s what happened in my case—to work with the community oncologists.

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 August 20, 2019