CLL Testing Archives

Testing is an ever-present part of the cancer journey, helping identify stage, treatment options, progress, and potential recurrence. Testing can also introduce a whole new vocabulary into your life. Don’t let jargon overwhelm you or undermine your grasp of test options and results.

We can help you evolve into an informed Chronic Lymphocytic Leukemia (CLL) advocate who understands results and how to use testing as a conduit to the most personalized care.

More resources for Chronic Lymphocytic Leukemia (CLL) Testing from Patient Empowerment Network.

How Can Patients Advocate for Genetic Testing?

How Can Patients Advocate for Genetic Testing? from Patient Empowerment Network on Vimeo.

How can chronic lymphocytic leukemia (CLL) patients ensure they are getting the appropriate genetic testing? Dr. Danielle Brander shares resources and advice to help patients become informed and empowered to ask questions and advocate for better care. Want to Learn More? Download the CLL Genetic Testing Resource Guide here.

Dr. Danielle Brander is Director of the CLL and Lymphoma Clinical Research Program at Duke Cancer Institute. Learn more about Dr. Brander.

See More From Your CLL Navigator

Related Resources

 CLL Genetic Tests: How Do Results Impact Treatment and Care?   CLL Genetic Testing Explained  Predictive (Familial) Genetic Testing vs. Cancer Genetic Testing: What’s the Difference?


Dr. Brander:

Patients and their caregivers can advocate for testing by having the information at hand as you meet with your oncology team. There are some tests that are very helpful around the time of diagnosis, especially the FISH test. We talked about how the FISH helps give information about what to expect and what treatment selections to use moving forward, but often these FISH panels also include testing to almost double check and exclude that there’s different type of lymphoma other than CLL present.

So all patients should have FISH at the time of diagnosis regardless of whether they need treatment or not.

There are many good resources online. The NCCN or the National Comprehensive Cancer Network has a guide for not just the treatment but also the diagnosis and initial testing that is helpful for CLL. And there’s a guide for physicians and other oncology team members. And then there’s also a patient-specific guide, and many of these markers are included in that guide and are helpful information that can be brought to the office and also can be helpful supporting information if there’s a concern about insurance coverage.

Another way to advocate would be, in addition to having the resources at hand, is asking what the approval might be for the testing in terms of insurance. And there might be supplemental information that your team or the patient, or their caregivers themselves can provide from these resources that’ll make sure that the testing is covered for patients.

Essential Lab Tests for CLL Patients

Essential Lab Tests for CLL Patients from Patient Empowerment Network on Vimeo

See More From The Path to CLL Empowerment

Dr. Danielle Brander provides an overview of essential lab testing for chronic lymphocytic leukemia (CLL) patients and discusses which tests should be repeated over time.

Dr. Danielle Brander is Director of the CLL and Lymphoma Clinical Research Program at Duke Cancer Institute. Learn more about Dr. Brander here.

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How Can Patients Advocate for Genetic Testing?



Dr. Brander:               

So, there are additional laboratory tests besides the genomic or the prognostic markers that patients should have at the time of diagnosis. One that all patients have is a test called the flow cytometry, and that is done often for CLL patients on the peripheral blood. It may also be done on the lymph node or the bone marrow. And this is a profile of the surface of the cells that help your pathologist and your oncologist to confirm that this looks like CLL.

So most patients when they’re told of the diagnosis will have this either from the blood or it’s found on the lymph node. Notably, it’s not required in all patients, and most patients, in fact, to have a bone marrow biopsy at the time of diagnosis unless there’s a concern about other blood counts being low, and it’s not clear why that is going on.

Most of the other tests besides the prognostic genomic genetic markers that we talked about such as FISH, or IGHV, or TP53 are routine tests. So patients will have a repeat blood count, and this should be a blood count with a differential of the white blood count. CLL is a problem of a type of white cells called lymphocytes. So on the differential of the types of white cells you’ll see the lymphocytes are usually marked clearly elevated. But the differential also makes sure that there’s no low other white blood cells such as neutrophils, which are important in fighting bacterial infection.

It’s also a good idea to have at the time – and most patients will – a baseline chemistry, which include the kidney and the liver function. Though definitely not common, some patients can have involvement of CLL of the liver or kidneys.

This is pretty rare, especially around the time of diagnosis. It’s helpful to have those baseline tests. It’s also helpful because the median age of diagnosis of CLL is usually the early 70s, and so a repeat of the baseline kidney and liver function might find other chronic health problems that are important to know moving forward.

Some of the other tests, baseline labs, are more patient specific, and might need follow-up. For example, if the blood count revealed anemia, which is a low hemoglobin or hematocrit, the cells that carry oxygen, your treating team might want to order additional tests for anemia and make sure that the anemia isn’t due to something totally unrelated to the CLL such as iron deficiency or B12 deficiency, etc. So, there might be additional lab tests depending on the additional screening tests that are obtained at that time.

One other test that I’ll – or two other tests that I’ll mention at diagnosis, 1.) Is immunoglobulins, mostly for patients that have had a problem with recurrent infections because patients can have low antibody levels associated with CLL, even if it’s not been treated. So, your team – if recurrent infections have been a problem – may check for those antibody levels, those immunoglobulin levels. A second test that can be helpful at baseline is a test called SPEP or serum protein electrophoresis, which looks for extra proteins in the blood. And again, this can be seen with CLL and other lymphomas, and especially depending on patient’s symptoms, your physician, and treating team might want to obtain those labs.

Again, there are good resources online including the NCCN, CLL and leukemia patient-specific sites that might give a better outline beyond what we can cover today of tests that might be helpful in your specific case.

There are labs and tests in CLL that are repeated over time. Two of the common ones obtained at baseline, the complete blood count and the chemistry, will usually be repeated at every visit after diagnosis for patients not being treated at the time of diagnosis. They’re part of the monitoring, so every three or four months after you’re diagnosed when you see your oncologist and you have an exam, your history of how you’ve been doing, and labs taken, the white count and the chemistries are all to be followed with time.

At the time of treatment, there’s often additional tests that might be done depending on the type of treatment you’re receiving to make sure you don’t have a specific risk for recurrent reactivation of infections, for example. So the testing might change at the time of treatment. And specific to the prognostic biomarkers, the genomic or genetic testing of the CLL that we mentioned, some of them are repeated with time and some aren’t. The FISH, which is obtained at the time of diagnosis is recommended to be repeated. If patients have treatment, the CLL goes into response, and then relapses because the FISH testing can change with time.

The IGHV mutation status, however, as long as it was felt to be an adequate appropriate sample, is a characteristic of the leukemia that doesn’t change with time and would not be repeated. Similar to FISH, it’s a good idea to test the TP53 at the – not always at the time of diagnosis, but before treatment to make sure there’s not TP53 mutation.

But then similar to FISH, if the CLL goes into response and relapses, it’s advisable to repeat the TP53 as that can change as patients have different treatment options and they both help to, as mentioned, inform the first treatment. They’re also helpful to have in mind as patients are being followed on treatments because some patients have a higher risk of the treatment to stop working, for example, if there are higher-risk genomic changes.


CLL Genetic Tests: How Do Results Impact Treatment and Care?

CLL Genetic Tests: How Do Results Impact Treatment and Care? from Patient Empowerment Network on Vimeo

Dr. Danielle Brander reviews the types of genetic tests used in chronic lymphocytic leukemia (CLL) and explains the role the results can play in a patient’s treatment and care.

Dr. Danielle Brander is Director of the CLL and Lymphoma Clinical Research Program at Duke Cancer Institute. Learn more about Dr. Brander here.

See More From Your CLL Navigator

Related Resources

How Can Patients Advocate for Genetic Testing?   CLL Genetic Testing Explained Essential Lab Tests for CLL Patients


Dr. Brander:               

There are many types of what we call genetic or genomic testing in CLL. One point that I think needs to be clarified is unlike other malignancies when sometimes we mention genetic testing, the testing in CLL is not testing of all the cells of your body where you’re looking for any genes that were perhaps inherited to your parents, or in your cells that are passed on to offspring.

Rather, just to clarify from the offset, when we talk about genetic or genomic testing, these are characteristics of the leukemia cells themselves. That is, when it becomes a cancer that’s called CLL, some of its genes can change, and those genes can provide helpful information from the time of diagnosis and what perhaps to expect in the years coming forward. And more and more we use these genomic tests to inform and help amongst your treatment options both as first treatments and if the patient requires subsequent treatment.

There are several different types. Some of them involve looking at whole, duplicate, or missing parts of the chromosome so the material that – what holds the genetic material in the leukemia cells.

And one of the very important of this test is a test called FISH. And FISH probes within the chromosomes to look for common abnormalities that are known to be important in CLL. So it doesn’t look at all the chromosomes, but by probing for specific areas, it makes it much more sensitive to be able to test the cells. And there are different patterns that we can talk about again that won’t change whether patients need treatment or not, but are helpful in knowing what to expect and what the best treatment options may be.

Another important test in CLL is a test called the IGHV mutation status, and that’s a big long word and test, but there are two parts of that. One is mutated and one is unmutated, and it sounds backwards, but patients with mutated IGHV may have a longer time to treatment and can have different responses and duration of responses specific to chemotherapy.

Now with the newer drugs that are available for CLL, another point I just want to make is that these tests were mostly originally studied in the era when we only had chemotherapy or chemoimmunotherapy to offer the patient. So, looking at the results of those studies may not inform completely because with the newer drugs, responses can often be seen even for patients that have what we call the higher-risk changes in FISH or IGHV.

The one other type of test that I’ll mention is looking for a mutation in a gene called TP53. Now by FISH testing, we look for deletions of part of the chromosome in the leukemia cell called deletion 17p. That deletes part of the chromosome that codes for your body, building a protein called TP53.

But patients also can have testing for mutations in TP53, not just the deletion. And again, this might point towards what to expect, but importantly really informs options for treatment moving forward. We won’t have time today to get into all the research tests. Those are some of the standard tests that we do to characterize the CLL after diagnosis, and there might be additional testing at the time of treatment or after relapse, and importantly for patients that are able to be involved in research, there’s many other testing that look at different mutations, though they’re not always part of routine clinical care.

There are a couple ways that the results of these tests can impact overall care and treatment discussions. To review, though, importantly as you meet with your team, the results won’t impact to date when you need treatment. There are certain indications for treatment of CLL, and these right now are independent than the results of the testing. Even if FISH identifies what was historically called a high-risk deletion, such as deletion 17p, that won’t change the recommendations to that patients need treated right away.

However, putting the different markers together may inform your team to help counsel you on what to expect moving forward. There are a couple studies looking at patients with higher-risk changes by FISH or with the IGHV unmutated may need treatment sooner than someone that does not have those changes. So it gives you a little information though still just a prediction of maybe what to expect.

Perhaps the greatest impact, though, is at the time of requiring therapy, and that is because patients with either deletion 17p by FISH, or TP53 mutations should never receive traditional chemoimmunotherapy as the first treatment because patients with this type of CLL are really resistant to chemoimmunotherapy, and the novel agents or clinical trials should be explored.

More and more, the test for IGHV at the time of first treatment can also be helpful in choosing amongst options as there were two recent large clinical trials where half the patients received chemotherapy, half the patients received in that particular trial ibrutinib-based therapy as the first treatment. And for patients with especially IGHV unmutated, the responses were much longer for patients that received the novel therapies. In fact, if you look at patients treated with the novel treatment such as ibrutinib or venetoclax, or next-generation inhibitors, there’s really no difference in response whether patients had mutated or unmutated IGHV and the depth of response.

So, it’s still very individualized discussion because there might be other medical problems patients have or specific other reasons not to use the novel targeted drugs.

But in terms of expectation for response and duration of response, that’s how it can be very helpful.

Coping With Scanxiety: Practical Tips from Cancer Patients

“Every three to four months I get a wake-up call that my life has taken an unexpected turn. Believe me, there are daily reminders of how different I am now; but scan time is big time scary time, mentally. It takes living with cancer to yet another level of heighten sense of mortality and anxiety.  So MANY thoughts and what ifs course through my brain.  SO hard to shut it off.”  – Katie Edick, METASTATIC AND MAKARIOS.

It may not be officially part of the medical lexicon yet, but “scanxiety” is no less real for those of us who have experienced a diagnosis of cancer.   Pamela Katz Ressler, RN, MS, HNB-BC, founder of Stress Resources, describes scanxiety as “the anxiety, worry and fear that accompanies the waiting period before and after a medical test.” She says it is a common side effect of modern medicine. “As our medical system has become more technologically adept at measuring indicators of disease so too has our anxiety” she says. “Scanxiety is an unintended consequence of medical testing, yet it is one that is rarely discussed by medical professionals with patients.”

Writing in Time magazine in 2011, lung cancer survivor, Bruce Feiler, characterized scans as “my regular date with my digital destiny.  Scanxiety, he wrote, arises from the feeling of “emotional roulette wheels that spin us around for a few days and spit us out the other side. Land on red, we’re in for another trip to Cancerland; land on black, we have a few more months of freedom.”

One of the most common emotional and psychological responses to the experience of cancer is anxiety.  Cancer is a stressful experience and normal anxiety reactions present at different points along the cancer journey.  Did you know that the word anxiety comes from the Latin word anxius, which means worry of an unknown event? Worry, in turn comes from the Anglo-Saxon word “to strangle” or “to choke” – which may very well convey the feeling we have right before a scan, or whilst waiting for its results.

Anxiety is a natural human response that serves a biological purpose – the body’s physical “fight or flight” (also known as the stress response) reaction to a perceived threat. Symptoms vary for each person.  You may experience a racing or pounding heart, tightness in the chest, shortness of breath, dizziness, headaches, upset tummy, sweating or tense muscles. Alongside these physical manifestations, you may feel irritable, angry or apprehensive and constantly on the alert for signs of danger. All of these signs indicate that sympathetic arousal of our nervous system has been activated, preparing us to stand our ground and fight or take flight and run away from danger.

Scanxiety, points out Katz Ressler, can be intense and may mimic symptoms of Post-traumatic stress disorder (PTSD). PTSD is an extreme anxiety disorder that can occur in the aftermath of a traumatic or life-threatening event. Symptoms of PTSD include re-experiencing the trauma through intrusive distressing recollections of the event, flashbacks, and nightmares. As Susan Zager, founder of the non-profit organization, Advocates for Breast Cancer (A4BC), points out “MRIs are very noisy – and because my recurrence was found through an MRI biopsy, I have many memories of scary results from that test.”

It’s been over ten years since I was diagnosed with breast cancer and while my scans are less frequent these days, the anxiety never fully goes away. As blogger and patient advocate, Stacey Tinianov writes, “This is reality even after almost five years with no evidence of disease. I’m not a worrier or a hypochondriac. I’m just a woman whose body once betrayed her by growing a mass of rouge cells that, if left unchecked, have the potential to bring down the house.”

If you are facing an upcoming scan and feeling anxious about it, you may find the following tips helpful. Based on my own experience and the experience of others in the cancer community, these tips are some of the ways in which we have learned to cope with scanxiety.

1. Identify your body’s stress response

How we experience stress is individual to each of us. Learning to tune into what happens in your body when you perceive a stressful situation is the first step in understanding your individual stress response. Does your jaw clench? Is your breath shallow? Are your muscles tense? When you become more aware of your physical response to stress, it will help regulate the tension when it does occur.

2. Pay attention to your breathing

When we are stressed we tend to breathe more shallowly.  Shallow breathing, which does not allow enough oxygen to enter our bodies, can make us even more anxious.   When you feel stressed, practise taking some slow deep abdominal breaths.  Deep abdominal breathing slows the heart down and lowers blood pressure. The advantage of focussing on the breath is that it is always there with us. We can turn to it anytime we are feeling anxious.

3. Stay focussed on the present

Focussing on the past or future can increase your anxiety. Katz Ressler recommends staying focused on the present moment as a way to quieten anxious thoughts. “Methods that have proved successful for scanxiety focus on tools of resilience, often based on mindfulness strategies,” she says. “Key in these methods is to focus on the present moment and not on the outcome of a test or scan.” Focusing on each and every breath is an excellent way to begin to increase your awareness of the present moment.  If you would like to try some short mindfulness meditations to increase resilience and help decrease anxiety, you will find some on Katz Ressler’s website.

4. Use visualization

By enhancing your relaxation skills, you are can lower the fight or flight response that is often triggered during times of increased anxiety. Visualization involves using mental imagery to achieve a more relaxed state of mind. Similar to daydreaming, visualization is accomplished through the use of your imagination. Karin Sieger who has recently received a diagnosis of cancer for the second time, shares this advice, “I certainly keep my eyes shut when inside the machine; focus on my breathing; remind myself this has a start and finish; and then generally try and go in my mind to a calm meadow and have a snooze. Because for once there is nothing else I can or should do for the next minutes.”

5. Practical coping tips

Karin also points to the claustrophobic feeling of being enclosed in a scanning machine as a contributor to anxiety.  Stage IV breast cancer patient, Julia Barnickle recommends an NLP (Neuro Linguistic Programming) process, called the “Fast Phobia Cure” which worked for her. “I still don’t like enclosed spaces,” she says, “but I certainly don’t panic like I used to.” Blogger Margaret Fleming also recommends asking the attendants for any items that can make you more comfortable, such as ear-plugs or a blanket.

6. Break the worry habit

Worry can be a habit and like all habits can be broken.  As soon as that worry voice starts in your head, examine it before it takes hold. Ask yourself, will worrying about this help me in any way?  Julia writes, “For me, worrying is a choice – as is happiness. In the same way that I choose to be happy, regardless of what happens around me or in my own life, I also choose not to worry about – or fear – what might happen in the future. I tend to believe that things will work out for the best. And besides… what will happen will happen, regardless of whether or not I worry about it – so I don’t see the point of spoiling my enjoyment in the meantime. I prefer to get on with my life.”  Jo Taylor, who is living with secondary breast cancer agrees. “I have taken the view that nothing will change the outcome, therefore there’s no point in worrying,” she says.

7. Create an anxiety worry period

Many patients speak about the most anxious period of time being the time you are waiting for scan results. As stage IV blogger and patient advocate, Susan Rahn, writes, “Waiting for the results of any scan that will tell you if the cancer is active and taking up residence in new parts of your body is just as  anxiety inducing, if not worse, as the time leading up to and the day of the actual scan.”

You won’t be able to break the worry habit entirely and ignoring anxious thoughts and feelings can sometimes make them worse.  It’s still important that you acknowledge your worry but not let it control your life. One tip is to designate one or two 10-minute “worry periods” each day, time to fully focus on your anxiety. The rest of the day is to be designated free of anxiety. When anxious thoughts come into your head during the day, write them down and “postpone” them to your worry period.

8. Take Some Exercise

Exercise is one of the simplest and most effective ways to reduce stress and anxiety –providing a natural outlet for your body when you are exposed to too much adrenaline. Jo Taylor, who runs an Exercise Retreat To Recovery program in the UK, finds that staying physically active is helpful. “I am still very nervous in the time between scan and reporting, “she says, “but throwing myself into work or exercise or anything else I do is helpful.”

Virtually any form of exercise, from aerobics to yoga, can act as a stress reliever. The important thing is to get moving, even if that means just walking around the block. Movement with flow and rhythm can also help calm the body and mind. Katz Ressler recommends gentle yoga and walking meditation as proven ways to decrease the stress response and increase the body’s natural calming mechanism. “Finally, remember”, she says, “while you cannot control the outcome, you can work to control the experience and that starts with building resilience.”

I hope you will find these tips helpful and if you have any other coping tips please feel free to add your advice in the comments below.