Factors That Indicate a CLL Patient Should Be Re-Tested or Re-Scanned

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Topics include: What Is Chronic Lymphocytic Leukemia?

Patient Power community member David wants to know, after receiving both FISH and IGHV tests, “Should I anticipate being retested? And what factors determine which tests?” Dr. Jennifer Brown, from Dana-Farber Cancer Institute,and Dr. William Wierda, from The University of Texas MD Anderson Cancer Center,respond by offering their expert perspectives on monitoring chronic lymphocytic leukemia (CLL) over time and measuring treatment response. The expert panel also discusses when CAT scans are recommended, self-advocacy and talking to your doctor about testing. Watch now to learn more.

Provided by CLL Global Research Foundation, which received support from AbbVie Inc., Gilead Sciences and TG Therapeutics.

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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:                     

Let’s direct this one to you, Jennifer. This one came in from David. He said, “I recently began treatment with ibrutinib (Imbruvica), like Michelle, on ibrutinib, and having excellent results with no apparent side effects.” Yay, David, that’s great. He said, “I had my FISH test, but it was two years ago, and the IGHV test about two months ago.” So, this is a basic question. It probably applies to many patients. “Should I anticipate being retested? And what factors determine retesting which tests?” Jennifer. 

Dr. Brown:                  

Right. So, as Bill said, the IGHV test remains stable over the entire course of CLL. So, once we know it, we don’t need to repeat it. In terms of the FISH test, I wouldn't normally do that, while a person is—sorry about that—is on therapy and responding to therapy. Normally, what we would consider doing if a person is on Ibrutinib, as long as they’re responding, probably no need to do any genetic testing. But if we’re worried about the disease perhaps starting to change or progress, as Bill mentioned, we have a sequencing test that looks at a couple of mutations that have been associated with progression on ibrutinib. 

And so, we do consider doing that in that setting. But until then, or if that—hopefully, that doesn’t happen, then I wouldn't worry about it.

Andrew Schorr:          

In just looking at the changing landscape, venetoclax (Venclexta), venetoclax with rituximab (Rituxan), maybe acalabrutinib (Calquence) at some point, would it be a different answer with any of those? 

Dr. Brown:                  

No. Well, same answer for acalabrutinib (Calquence) probably in terms of the mutations. Venetoclax, we don’t yet know what causes resistance with venetoclax, so we don’t have a specific test for it. I would say that if you’re on a therapy, and you stop a therapy, say, in remission, or if the disease progresses on to therapy, at the time the disease progresses or comes back, that’s when we consider redoing FISH testing, the karyotype testing Bill mentioned, or potentially, sequencing testing. 

Andrew Schorr:          

Bill, we had a—it’s a question that came in from Rose Marie. And maybe it’s similar. “I was diagnosed with CLL in February, 2014. I’m in watch and wait, and I was wondering what your thoughts are on repeat genetic testing after the initial results. How often do you recommend?” And also, she was asking about CAT scans, or other kinds of testing, as well. 

Dr. Wierda:                 

I’m glad she brought up the CAT scan question. So, in the absence of any treatment, and if you’re not going to use the information for any management or any of those issues, I would not do retesting. So, in the watch-and-wait phase, I don't think it’s necessary to do repeated serial testing. If this patient needed treatment, and if their initial testing was in 2014, it’s already four years later, if they needed treatment, it would not be unreasonable to retest for FISH and TP53 mutations, when you’re selecting treatment for the individual. But otherwise, I don’t do serial testing unless there’s a treatment decision that’s being made after their initial testing. 

CAT scans are an important topic. Community physicians are used to managing lymphoma patients. For lymphoma patients, we do frequently serial CAT scans. When patients are in the watch-and-wait phase, we do serial CAT scans for lymphoma. We also do it for response assessment, and for follow-up of their disease. For CLL, that’s not necessary, I don't think. And I have seen patients who are in the watch-and-wait phase in the community. I have seen them, where they’ll come in, and they’ve had serial CAT scans, they’ve had a CAT scan every six months. 

And you can generally have a good understanding impression of what’s happening with CLL by examining a patient, talking to a patient, and finding out what symptoms they’re having, and looking at their blood counts. I don't think you need to have serial CAT scans in the Watch-and-Wait phase for patients with CLL. And that only really increases the radiation exposure without any value. We don’t usually make clinical decisions based on those scans. 

So, serial CAT scans, I don't think are necessary. They are, right now, necessary for us when we evaluate for response. So, what’s the best response to treatment, if the patient’s in complete remission, we need to do a CAT scan to demonstrate that. But serial CAT scans are not necessary in CLL.   

Andrew Schorr:          

Bill, just one follow-up question for you. And it’s really on advocating for yourself. So, as we said, we know many patients are seen by community oncologists. And you rattled off the tests they should ask for, and maybe the tests, they should say, “This is really needed” like, another CAT scan. So, what do you say to people about being self-advocates? 

Dr. Wierda:                 

Certainly, I think patients need to be self-advocates. I think the CLL community in general is very well informed as a community, probably much better than a lot of the other patients we see with other diagnoses. So, they are well informed, typically. And if they’re not informed, and there’s something that doesn’t sound right, and their physician is recommending, for example, serial CAT scans, I would recommend that the patient ask the physician what they’re going to do with the information. 

Say, “Okay, I’ll do a CAT scan, but how are you going to use that information? How’s that going to be useful for helping you with managing my disease?” And put it on them to explain what it’s useful for, and that it’s really necessary.

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 July 23, 2019