What is the Difference Between Lymphoma and Leukemia?
A leading oncologist offers clarity on leukemia vs. lymphoma
Edited by:
Jenna Jones
In this discussion, we delve into the distinction between two types of blood cancer: leukemia and lymphoma. Confusion often arises because both are blood cancers. Leukemia typically occurs in the bone marrow, while lymphoma originates in the lymphatic system, primarily impacting lymph nodes and tissue.
Dr. Matthew Matasar, Chief of the Division of Blood Disorders at Rutgers Cancer Institute and an expert hematologist-oncologist shares the differences between leukemia and lymphoma – in human terms.
At The Patient Story, we aim to provide straightforward answers for those looking to better understand blood cancers.
This interview has been edited for clarity. This is not medical advice. Please consult with your healthcare provider for treatment decisions.
What is the Difference Between Lymphoma and Leukemia?
Dr. Matasar: This is a point of confusion because these terms get bandied around a lot. Lymphomas are cancers of lymphocytes; that is a biological term. Leukemia means cancer in the blood. It’s a geographical term. It doesn’t tell you anything about what type of cancer it is.
You can have breast cancer that is in the leukemic phase, meaning it’s a breast cancer, but it’s spread into the bloodstream. You can have prostate cancer, in the leukemic phase. You can have lymphomas that are leukemic lymphomas. Chronic lymphocytic leukemia is a lymphoma that is leukemic. It’s a lymphoma in the bloodstream.
Other types of leukemia are not from lymphocytes but from other types of immune cells. The most common of those is acute myelogenous leukemia or AML. That’s a type of leukemia that comes not from lymphocytes but from myelocytes, a different type of immune cell.
Role: Hematologist-Oncologist Focus: chronic lymphocytic leukemia (CLL) & leukemia and lymphoma | CAR T, targeted therapy Provider: Medical College of Wisconsin
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Role: Clinical investigator and professor of hematological oncology Focus: Multiple myeloma, Waldenström’s Macroglobulinemia, early screening, clinical trials Provider:Dana-Farber Cancer Institute (Boston)
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How Long Can You Live with Chronic Lymphocytic Leukemia?
Dr. Adam Kittai and Dr. Joanna Rhodes share their thoughts on CLL life expectancy
Edited by:
Jenna Jones
Receiving a chronic lymphocytic leukemia (CLL) diagnosis is likely to lead to a very human question: How long can I or my loved one live with CLL? To answer that question, we went directly to two CLL experts who have seen patients at all different stages.
In this conversation, Dr. Adam Kittai from The Ohio State University – The James, and Dr. Joanna Rhodes from Rutgers Cancer Institute of New Jersey share their insight and expertise on Chronic Lymphocytic Leukemia (CLL), offering a comprehensive understanding of the disease landscape. Through their combined knowledge, they shed light on factors influencing the lifespan of individuals with CLL, such as disease biology, genetic tests, and age at diagnosis.
Together, Dr. Rhodes and Dr. Kittai impart not only scientific insights but also a sense of hope, emphasizing the personalized nature of each CLL journey.
People can live decades with CLL, and they can live decades without needing treatment. Everyone’s a little bit different.
Dr. Joanna Rhodes
This interview has been edited for clarity. This is not medical advice. Please consult with your healthcare provider for treatment decisions.
How long can individuals live with chronic lymphocytic leukemia (CLL), and what factors contribute to the variation in life expectancy?
Dr. Joanna Rhodes: People can live decades with CLL, and they can live decades without needing treatment. Everyone’s a little bit different. Some of that has to do with the age at which you’re diagnosed, some of it has to do with your disease biology, and some of that can be told by genetic tests that we send on your CLL. It gives me an idea of how I think your CLL is going to behave potentially over time. Some of that we can tell also within the first couple of years by what your blood counts do over time.
Could you elaborate on the significance of changes in white blood cell count for individuals with CLL?
Dr. Joanna Rhodes: Now, the natural course of CLL is eventually, your white blood cell count will go up. The first time that happens, it feels very scary for sure because you don’t know how that’s going to happen over time. But your white blood cell count going up doesn’t mean it might not come back down. CLL cells are pretty reactive, so if anything is going on, if you have an infection or if you had surgery, your white blood cell count can go up. It doesn’t mean it’ll stay that high. It can go back down. That’s something that we see pretty commonly in clinical practice.
What can you tell us about specific survival rates and life expectancy for people with CLL?
Dr. Joanna Rhodes: According to SEER, which is our National Cancer Institute data, the five-year survival rate currently for CLL is around 89%. That means at five years, 89% of people who were diagnosed with CLL are still alive. What we don’t always know is where the 11% death rate is from because the median age of diagnosis of CLL is 70. As we get older, other things can happen, like heart disease, hypertension, and motor vehicle accidents. It doesn’t necessarily take into account exactly why patients who have CLL are passing away.
“Get creative and try to find ways to bring joy to your life and happiness because life is short for all of us. No one knows what the next five seconds are going to bring so just live your life and enjoy your life”
How do you approach discussing survival statistics with patients, considering the emotional impact it may have?
Dr. Joanna Rhodes: That’s also a hard statistic to hear, so one of the ways that I frame this for patients is that while we have statistics, that’s taking a whole group of people and figuring out the trend. The only person that matters is you. You’re what we call an n-of-1, and so that’s important to remember. Just because there’s a number out there doesn’t necessarily mean that number relates to what your story is going to be and what your journey is going to be.
Dr. Kittai, can you share some insights on what to expect regarding survival rates for individuals with CLL??
Dr. Kittai: One of the questions I hear is the average age of death of CLL patients. There was an interesting study that was presented at iwCLL that looked at all patients who were treated in modern-day clinical trials. These are patients who require treatment. They did a study where they took all those patients and matched them to age-matched controls in the general population. The overall survival of the two groups was practically equal.
With treatment, patients were getting very, very close to their life expectancy. Remember, these are all clinical trials so it’s going to seem a little bit low. It was 52 to 55 months versus age-matched controls which was 56 months. Once again, it was age-matched controls, so they matched the population to age-matched controls to general society, and the difference was only by a few months. That tells us that our patients with CLL are living very close to the normal life expectancy, even if they require treatment with our new therapies, which is great news.
1st symptoms: Tightness, lumps in left side of neck, severe pain in left shoulder, enlarged spleen Treatment (CLL): 6 cycles of EPOCH, clinical trial for DuoHexabody-CD37
Latest Data on Newly Approved CLL Drug Pirtobrutinib Presented at ASH 2023
Top CLL doctors share their thoughts on pirtobrutinib
Edited by:
Jenna Jones
Accelerated approval was granted to pirtobrutinib (JAYPIRCA, Eli Lilly and Company) by the U.S. Food and Drug Administration (FDA) for the treatment of adult patients with chronic lymphocytic leukemia (CLL) or small lymphocytic lymphoma (CLL/SLL) who have received at least two prior lines of therapy, including a BTK inhibitor and a BCL2 inhibitor.
This interview has been edited for clarity and length. This is not medical advice. Please consult with your healthcare provider for treatment decisions.
What makes pirtobrutinib distinct from other FDA-approved BTK inhibitors?
Dr. Joanna Rhodes: Pirtobrutinib is different from our other FDA approved BTK inhibitors because it’s something called a non-covalent inhibitor. It is a different drug entirely than our prior BTK, our covalent BTK inhibitors – ibrutinib acalabrutinib, and zanubrutinib. I consider it in its own class of drug, as opposed to lumping it into all BTK inhibitors because they do have different pathways and I think will be used in different scenarios.
Right now, the current FDA approval for pirtobrutinib is for patients that have received a covalent BTK inhibitor – so have gotten ibrutinib, acalabrutinib, or zanubrutinib – as well as a BCL2 inhibitor. And in usually in the United States, that’s venetoclax. It’s the one that’s commercially available. One of the challenging clinical scenarios that we were in before pirtobrutinib was if patients need more than two lines of therapy, what were we giving them? And we didn’t have a lot of great options.
Can you share your insights on the safety and effectiveness of pirtobrutinib?
Dr. Joanna Rhodes: Having participated in the BRUIN trial, I can tell you from a patient perspective that it is very few side effects. I think that’s really wonderful, and it’ll be exciting to see how pirtobrutinib moves into the treatment landscape of CLL
Can you provide an overview of the BRUIN trial?
Dr. Adam Kittai: So here at ASH, we saw an updated BRUIN trial analysis by my mentor, Dr. Woyach, at the CLL oral session that gave us a longer time follow up for patients on pirtobrutinib. But it also helped us know how patients do, whether they got BCL2 inhibitor venetoclax or not. In the trial, it was only mandated that you get a BTK inhibitor. 100% of patients received a BTK inhibitor. However, about 50% of received venetoclax as well. Dr. Jennifer Woyach showed us in the trial that if patients had received a prior BTK inhibitor and a venetoclax when they got pirtobrutinib, the median PFS was around 15 months, whereas if they did not give venetoclax, the median PFS is around 23 months.
Can you elaborate on the implications of this data for informing patients about the expected duration of treatment?
Dr. Adam Kittai: The reason why I bring this up, and why I think it’s important, is it helps us inform patients about how long we expect them to stay on drug. It also might have implications into the future about sequencing in terms of whether or not we should go from a covalent BTK inhibitor to venetoclax to a non-covalent or covalent BTK, better to non-covalent BTK orbiter to the nucleus. I think time will tell until we really know the answer to that question, but at least knowing this data is really informative.
Another thing that was presented by Doctor Jennifer Brown at Dana-Farber was the resistance mechanisms to pirtobrutinib. We got a better idea of how resistance forms in pirtobrutinib and how pirtobrutinib helps with resistance to covalent BTK inhibitors.
Once again, she showed that T474I and L528W are the primary resistance mutations for pirtobrutinib, and knowing those resistance mutations helps us as well. Knowing, sequencing, knowing and informing in the future whether or not we can go from covalent to non-covalent, which we know we can, or non-covalent to covalent, which is still a question that I think remains to be solved.
What can you tell us about pirtobrutinib’s side effects and clinical trials?
Dr. Joanna Rhodes: I can tell you from a patient perspective that it has very few side effects. I think that that’s really wonderful, and it’ll be exciting to see how pirtobrutinib moves into the treatment landscape of CLL.
There’s a lot of upcoming clinical trials using pirtobrutinib that we don’t have data from yet. They’re currently enrolling, and some have completed enrollment. Those are comparing pirtobrutinib to other covalent BTK inhibitors for patients who haven’t been treated with a BTK inhibitor. And then I think what’s interesting is we’re going to see it used in combination therapy for time-limited durations of treatment. And I think it’s going to be a safe and effective drug in that scenario as well, but we don’t have data from those trials yet. So definitely more to come from pirtobrutinib. But again, really exciting that for patients that have progressed or have received a BCL2 inhibitor and a covalent BTK inhibitor, we have this as a potential treatment option, commercially available and readily available outside of clinical trial.
Final thoughts
Dr. Adam Kittai: So really exciting to see this data, really exciting to see the evolution of pirtobrutinib. And I think the most exciting thing is now we just have another drug that’s approved for the treatment of CLL, which is just fantastic for our patients.
1st symptoms: Tightness, lumps in left side of neck, severe pain in left shoulder, enlarged spleen Treatment (CLL): 6 cycles of EPOCH, clinical trial for DuoHexabody-CD37
Patients with chronic lymphocytic leukemia (CLL)/small lymphocytic lymphoma (SLL) face a compromised immune system, heightening the risk of infections. Vaccinations are often recommended for people with CLL/SLL but patients may still have questions.
To address CLL and vaccinations, we invited a CLL expert panel to discuss the question specifically. Our panel featured Dr. William Wierda, MD, Ph.D., from MD Anderson, Dr. Nicole Lamanna, MD from Columbia University Medical Center, Dr. Adam Kittai, MD from the Ohio State University, and Jackie Broadway-Duren, PhD, DNP, APRN, FNP-BC from MD Anderson.
In addition to the video above, read the audio transcript of the conversation to learn more about the shingles, RSV and COVID vaccines for CLL patients.
Thank you to AbbVie & BeiGene for their support of our patient education program! The Patient Story retains full editorial control over all content. This interview has been edited for clarity and length. This is not medical advice. Please consult with your healthcare provider for treatment decisions.
Patient: Dr. Wierda, is the shingles vaccine okay with CLL?
Dr. Wierda: You should not get the live virus vaccination for shingles. The one that’s used most commonly now, SHINGRIX, is not a live virus. It’s two doses separated by 2 to 6 months. You should not get live virus vaccinations if you have CLL.
In general, we favor continuous therapy for patients with deletion 17p.
Dr. Adam Kittai
17p Deletion
Patient: Ten years ago, the FISH test seemed to be a big deal and if one had 17p deletion, you didn’t have much time left. Is 17p deletion worse than anything else now?
Dr. Kittai: 17p is still one of our most important prognostic tests. The classic FISH testing that we do is deletion 13q, which is a good prognostic factor, deletion 11q, which used to be a bad one but now seems not to matter as much anymore, trisomy 12, which is intermediate, and deletion 17p.
We knew that patients who had deletion 17p on FISH did not respond well to chemotherapy. Our new agents work for patients with 17p.
In general, we favor continuous therapy for patients with deletion 17p. Not to say that you can’t get time-limited therapy with 17p, but it appears that 17p may matter more with time-limited therapy than it does with continuous therapy.
Typically, 17p goes hand in hand with TP53, which is done on next-generation sequencing. Sometimes they can be discordant. It’s pretty much the same thing.
In the clinical trials, when we talk about these combinations, we’re trying to see if these alternative strategies will be better in higher-risk disease individuals versus non-high-risk disease individuals.
Dr. Nicole Lamanna
Dr. Lamanna: Patients who had these features were considered more adverse or worse, but these new targeted therapies have done great for those individuals.
In the clinical trials, when we talk about these combinations, we’re trying to see if these alternative strategies will be better in higher-risk disease individuals versus non-high-risk disease individuals. How do we tailor our therapies better depending on the features of your disease?
Patients with 17p and TP53 are doing so much better on these targeted therapies. They’re still important but compared to the chemoimmunotherapy days, folks are doing much, much better because of these targeted therapies.
RSV Vaccine
Patient: What is the consensus on the RSV vaccine?
Dr. Wierda: I don’t think there’s a consensus yet. It’s a new vaccine. We heard a little bit of data at the International Workshop on CLL meeting. We need more data on its effectiveness in patients with CLL.
I don’t see a lot of drawbacks in giving it but we haven’t entered an era where we’re recommending it for every patient like we do for the flu shot. That may come, but because it’s a new vaccine and there’s limited data in the general population, there’s not any data available for us in the CLL community.
Even though there are risk-benefit ratios for everything you do in life, including side effects potentially from some vaccines, we don’t want you getting sick and being admitted to the hospital due to these infections.
Dr. Nicole Lamanna
COVID Vaccine
Dr. Lamanna: We think about vaccines because we’re trying to mitigate infectious complications in patients with CLL. In general, for many CLL patients, the immune system is impaired so your ability to mount the same type of antibody response to some vaccines compared to patients without CLL is generally not as good, but that doesn’t mean you shouldn’t get them.
The point is that you can get the flu shot and still get the flu, you can get the COVID vaccine and still get COVID, but if it diminishes the severity of those illnesses and prevents hospitalizations, that’s what we’re trying to do, right? We’re trying to give you any armamentarium that you might have to protect yourself from bacterial or viral infections that are running around so you’re not as sick.
One of the complications we see in CLL patients is infection — pneumonia, sinusitis, cellulitis, and hospitalizations. Infections and recurrent hospitalizations inhibit the quality of life. We have many patients who go through this day in and day out. We try anything we can use to diminish infections.
Vaccines may not be perfect, but we still recommend the COVID vaccine. Despite all the potential side effects, you should get the vaccine. We lived through 2020 and saw how bad it was. We saw how many people died. CLL patients had one of the highest mortality rates due to COVID.
Even though there are risk-benefit ratios for everything you do in life, including side effects potentially from some vaccines, we don’t want you getting sick and being admitted to the hospital due to these infections.
There is no evidence that the COVID vaccine causes CLL.
Dr. Adam Kittai
Jeff: Dr. Kittai, I know the answer to this question, but I need for this to be reinforced in our community because it is a pervasive belief. There are a large number of patients who believe the COVID vaccine gave them CLL. Can you talk about why they think this?
Dr. Kittai: There’s no data to state that the COVID vaccine gave patients CLL. Honestly, it comes back to the statement that Dr. Nicole made. A lot of people think that they get the flu vaccine then they get the flu. Ultimately, when COVID was first happening, we were recommending our older patients to get the COVID vaccine.
Given that CLL is a disease of older patients, there’s going to be a chance that any older patient might develop CLL at any given time. It may have also been that someone may not have seen the doctor for a while, got COVID, went to go see the doctor, and finally had labs. Remember that CLL is usually diagnosed incidentally so it just might be timing, but there is no evidence that the COVID vaccine causes CLL.
1st symptoms: Tightness, lumps in left side of neck, severe pain in left shoulder, enlarged spleen Treatment (CLL): 6 cycles of EPOCH, clinical trial for DuoHexabody-CD37
Should Cancer Patients Reconsider CAR T-cell Therapy?
Explore CAR T-cell therapy insights with Dr. Joshua Brody amid FDA investigation.
https://youtu.be/swIpc_DeMtM
The headlines about the recent FDA investigation into CAR T-cell therapy have raised questions about the cancer treatment for many patients.
To provide some answers, we sat down with Dr. Joshua Brody, Director of the Lymphoma Immunotherapy Program at The Tisch Cancer Institute at Mount Sinai, at the ASH conference in San Diego 2023.
As background, the FDA is investigating T-cell malignancies associated with BCMA- or CD19-directed autologous CAR T-cell immunotherapies.
Dr. Brody addresses pertinent questions about CAR T-cell therapy. Given the ongoing evaluation of the identified risk of T-cell malignancy and the potential serious outcomes, including hospitalization and death, patients and their caregivers must stay updated.
In this Q&A with Dr. Brody, we aim to empower patients to make informed decisions. Understanding the risks and benefits, the personalized nature of the treatment, and the latest advancements in cancer immunotherapy become paramount.
What prompted the recent FDA investigation into CAR T-Cell therapy?
Dr. Joshua Brody: The FDA starting a new investigation because of some new data. And the data was that there were a total of 20 reported cases of a bad type of lymphoma called T cell lymphoma, that occurred in patients who had previously gotten CAR T-cell therapy.
Why is this investigation considered significant?
Dr. Brody: While 20 cases out of 30,000 might seem small, it’s crucial to investigate further to ensure the accuracy of these numbers and determine if there might be another 20 cases that we haven’t heard about yet.
Can you provide insights from a specific case that is being discussed at ASH?
Dr. Brody: It involved a patient with myeloma, not Dlbcl, who got CAR T-cell therapy. And in that case, it sounded very clear that the T cell lymphoma that they got months to a year after the CAR T-cell was because of the CAR T-cell therapy, not just a coincidence.
What are the known risks associated with CAR T-cell therapy?
Dr. Brody: The risks of CAR T-cell therapy we know about, are still probably of greater consequence for our patients than this super rare, but now new and therefore kind of exciting and interesting thing.
How does the risk of T cell lymphoma compare to other potential side effects?
Dr. Brody: If you have lymphoma, you’re probably going to get some therapy one type or another. And all of these therapies have some risks. So this new thing, the T cell lymphoma that developed in some number of people after the CAR T-cell therapy is still proportionally a very small risk compared to these other things.
Should patients alter their plans for CAR T-cell therapy based on this information?
Dr. Brody: So I don’t think that people should have to change their plans or pump the brakes on that plan, but they surely should have the conversation with their oncologist, their lymphoma doctor, as there are different types of monitoring that we should do afterwards just to keep an eye out for this.
Is there any identified higher-risk group for developing T-cell lymphoma?
Dr. Brody: Not that we know of yet.
Why was the occurrence of T-cell lymphoma not entirely unexpected?
Dr. Brody: This side effect was both surprising and should not actually be super surprising. Because CAR T is a type of gene therapy.
How does the risk of T-cell lymphoma compare to other therapy-induced cancers?
Dr. Brody: So it is kind of related. But just again, a pretty rare thing.
What questions should patients be asking about their treatment options?
Dr. Brody: Patients should be asking, you know, what’s right for me specifically. That answer may have been clear five years ago, CAR T-cell was, you know, the immunotherapy now, maybe bispecific antibodies by themselves or maybe bispecific antibodies in combination with some standard therapies.
Can you elaborate on the process of CAR T-cell therapy and its personalized nature?
Dr. Brody: So you sit there on the Leukapheresis machine for maybe four hours, and we get some T cells from that, some of your immune cells, and they send those T cells to one of the manufacturing labs, and they take those T cells and put this gene inside. And the gene is called a car.
CAR T-cell therapy is both immune therapy and gene therapy. We have patients give some blood. It’s a little more than the normal, you know, blood poke in an arm because we do this thing called pheresis or leukapheresis. You give some blood, we keep one part of it and then give you back all the blood so you’re not too drained afterward.
What is the significance of the personalized aspect of CAR T-cell therapy?
Dr. Brody: CAR T-cell therapy is a personalized product made for each person. And then before we re-infuse those CAR T-cells, people get some chemotherapy right beforehand. And that chemotherapy sometimes call it lymphodepleting chemotherapy.
Stephanie Chuang, founder of The Patient Story, celebrates five years of being cancer-free. She shares a very personal video diary with the top lessons she learned since the Non-Hodgkin lymphoma diagnosis.
Cancer details: Characteristics of both subtypes 1st Symptoms: Lower abdominal pain, blood in stool, loss of appetite Treatment: Chemotherapy (Part A: R-CHOP, HCVAD, Part B: Methotrexate, Rituxan, Cytarabine)
CBC Tests and Cancer: What Doctors Look For in Your Results
Written By:
Matthew Romeo
A complete blood count test (CBC) is a blood test used to help monitor your overall health. In some instances, CBC tests are also used to help diagnose and track certain forms of cancer, like leukemia and Hodgkin’s or non-Hodgkin’s lymphoma.
A complete blood count test measures:
Red blood cell count (RBC)
White blood cell count (WBC)
Platelet count
Hemoglobin (Hg or Hgb)
Hematocrit
Mean corpuscular volume (MCV)
In this post, we look more into a CBC test, including how it is taken, what your results mean, and how it helps diagnose and monitor different forms of cancer and treatment.
When you receive your CBC test results, you often receive a report with a bunch of abbreviations and numbers that don’t make sense to the average person; however, once you understand what the abbreviations mean.
In a complete blood count, you’re getting a bunch of information. There are three main types of blood cells that we’re looking for.
White blood cells are your body’s primary defense mechanism. They help remove foreign materials and cellular debris, destroy infectious agents and cancer cells, and help produce antibodies.
A CBC test typically provides the results of two white blood count measurements:
White blood cell count – the measurement of the total number of white blood cells in your blood count.
White blood cell differential – the number of each type of white blood cell in your blood sample. The five types of white blood cells are neutrophils, lymphocytes, monocytes, eosinophils, and basophils.
Red Blood Cell Test Results
Red blood cells perform the essential function of delivering oxygen from your lungs to other parts of your body, along with transporting waste like carbon dioxide out of the body.
A typical CBC test provides results for 4 different types of red blood cell measurements:
Red blood cell count – the number of red blood cells in a blood sample.
Hematocrit – the percentage of your blood made up of red blood cells.
Hemoglobin – the amount of hemoglobin that is in your blood. Hemoglobin is the protein in your red blood cells that transports oxygen throughout the body.
Mean corpuscular volume (MCV) – measures the size of your red blood cells. Irregular red blood cell sizes may be a sign that something is wrong.
Platelet Test Results
Platelets play an important part in forming blood clots to stop you from bleeding. The only measurement a CBC test provides for platelets is the total number of platelets in your blood sample.
What are the Average CBC Test Results?
Now that you know what each test measures, you may wonder, what are the average measurements for each test? When you receive your blood test results, the test usually provides the value you got, the reference range, and if your results fall within that range.
If your counts fall outside the normal range, it doesn’t necessarily mean that anything is wrong or you have cancer. However, your doctor will probably investigate further if you receive an abnormal result.
I get really cranky and crabby. Sometimes I’ll go to my primary care doctor to do a CBC just so I can see, “Okay, this is good. No surprises.” It makes me feel better, and he’s more than happy to do it.
Specific forms of cancers can be detected as part of a CBC result. However, it’s important to note that a CBC test is only one tool when diagnosing cancer. Just because you have abnormal CBC test results does not necessarily mean you have cancer.
The different types of cancers that a CBC test can detect include:
Leukemia– According to the American Society of Hematology, abnormal levels of white blood cells and low levels of red blood cells may indicate leukemia.
Hodgkin Lymphoma – An individual with anemia (low red blood cell count) and a high white blood cell count may have Hodgkin Lymphoma according to the American Cancer Society,
Non-Hodgkin Lymphoma – Low levels of red blood cells, hemoglobin, platelets, and neutrophils may indicate a patient has non-Hodgkin lymphoma according to Lymphoma Action,
Multiple Myeloma – Those with anemia and decreased platelet and white blood cell counts may have myeloma.
Polycythemia Vera (PV) – According to the Mayo Clinic, patients with a high red blood cell count and an elevated hematocrit measurement may have PV.
Myelofibrosis – Patients with low red blood cells and potentially increased platelet, hemoglobin, and white blood cell counts may have Myelofibrosis according to Cancer Research UK.
It’s important to remember that a CBC test is not the only diagnostic tool or blood test used to diagnose cancer. Therefore, a diagnosis cannot be made solely based on the results of a CBC test.
One of the things I didn’t know until I spoke to my doctor is that he asked me to always let him know when we did CBCs if I had exercised before or a day before. In many cases, exercise increases your white cell counts.
Cancer treatment can impact your CBC test results. Some care teams may use a CBC test to track how treatment may affect you. The forms of treatment that can impact your CBC test results include:
Chemotherapy – May lower your white blood cell, red blood cell, and platelet counts.
Surgery – Your red blood cell count may be low following surgery.
Radiation therapy – May lower your red blood cell and platelet counts.
While these are just the general forms of treatment that may impact your CBC test results, cancer-specific treatments and drugs may also affect your results.
How is a CBC Test Taken?
You may not even notice, but a CBC test is typically part of the routine blood work you get for your annual physical. The test is taken by simply withdrawing a small vial of blood to be tested in a lab.
Due to its ease and accessibility, the CBC test is a great way to continuously screen for cancer.
Learn More About CBC Tests
Visit our navigating cancer page if you want to learn more about CBC tests or cancer in general. There you will find resources from dealing with a cancer diagnosis to information about the latest treatments.
Empowering Your Voice: Signs of Medical Gaslighting as a Cancer Patient
Nadia was repeatedly told, “Nothing was wrong with her.” Amy’s symptoms were consistently attributed to anxiety. Nick was told that he was too physically fit to be sick. Sadly, all three were eventually diagnosed with various types of cancer.
The term “gaslighting” has gained significant popularity in recent years, often used to describe situations where individuals manipulate others into questioning their own reality.
As a cancer patient, you likely trust your doctors and healthcare providers to provide the best care. Unfortunately, some patients experience medical gaslighting, a phenomenon where doctors or healthcare providers downplay a patient’s symptoms or dismiss their concerns.
Medical gaslighting can be devastating for patients and can lead to delayed diagnoses, inadequate treatment, and even death.
Dr. Jennifer Kilkus, Ph.D., ABPP, is a board-certified clinical health psychologist with a special interest in oncology. She is also the owner of Grounded Behavioral Health, an organization with a mission to improve the quality of life of healthcare consumers and providers through evidence-based consultation and intervention.
For a deeper understanding of the topic and how to manage it, we sat down with Dr. Jennifer Kilkus, a board-certified clinical health psychologist and an Assistant Clinical Professor within the Department of Psychiatry at Yale School of Medicine. Specializing in the mental health of oncology patients, she sheds light on gaslighting in the medical field and its impact on cancer patients.
In conversation, she discusses the origins of the term and how medical gaslighting manifests as a dismissal or minimization of cancer patients’ concerns. We explore medical gaslighting in the patient experience, its underlying biases, and the importance of slowing down, listening, and advocating for oneself in the face of dismissive medical encounters.
Medical gaslighting is based on the concept of gaslighting, which originates from the movie Gaslight, where a husband manipulates his wife’s reality to make her doubt her own judgment.
Dr. Kilkus describes medical gaslighting as, “A minimization or a dismissal of people’s concerns. I think there are a lot of different contributors to it, but that’s kind of the general gist of it, is just a dismissal or minimization of what someone’s saying that they’re having an experience within a medical context.”
“I was so angry and resentful while starting treatment that my oncologist continued to gaslight me and ignore all of my cries for help. I felt like a crazy person. I often wonder, what stage would I have been, and would my journey have been different had the doctor believed me.”
To further clarify that medical gaslighting might not necessarily be attributed to malicious behavior, Dr. Kilkus says, “I wouldn’t put so much intent behind it.” She explains that as humans, we all have biases, misunderstandings, and time constraints that may lead to unintentionally gaslighting someone else.
Despite intentions, there are ways to spot medical gaslighting when you’re experiencing it.
Five Signs You’re Experiencing Medical Gaslighting
By understanding the signs of medical gaslighting, you can assert your needs, seek additional opinions, and ensure that you receive the care and respect you deserve. Here are a few situations that might clue you into medical gaslighting.
Chronic pain dismissal: You’re experiencing pain, but your healthcare provider tells you that it’s “all in your head” or that “you’re exaggerating your symptoms.” Dr. Kilkus emphasizes that “people have wisdom about their bodies,” and patients should be persistent if something doesn’t feel right.
“I got an appointment with my primary care. I said, ‘These symptoms aren’t going away. In fact, everything seems to be getting worse. I’m really concerned.’ He said, ‘You don’t look sick. If you had cancer, Amanda, you would be losing weight at a rapid pace. Your face would be sunken in.’ I just couldn’t believe he said that to me.”
Unexplained symptoms dismissal: You’re experiencing symptoms that your healthcare provider cannot explain, but they insist that there’s nothing wrong with you. Dr. Kilkus encourages patients to educate themselves about their condition and seek a second or third opinion if necessary.
Dismissal based on age: You’re experiencing concerning symptoms or pain but your healthcare provider asserts that you are too young to get cancer. “That is a really common thing that I hear is ‘you’re too young to have cancer’,” says Dr. Kilkus. “You’re too young to have this kind of pain. You’re too young to have these kinds of problems. It must be anxiety or it must be X, Y, or Z thing.” She explains that people experience pain at all ages so this phrase is a really big sign. Again, Dr. Kilkus recommends getting a second opinion.
Immediately blaming symptoms on mental health issues: You’re healthcare provider quickly attributes your symptoms to anxiety or stress. “If somebody is having a symptom that is medically concerning to them, of course, they’re going to be anxious about it,” explains Dr. Kilkus. “And it is true that anxiety can exacerbate symptoms or kind of mask what is really going on. But that doesn’t mean, that it shouldn’t be followed up on, because we also know that there are medical conditions that can cause symptoms that look like mental health concerns.”
“When I went back to that doctor for the follow-up, he said to me, ‘Yeah, there’s nothing wrong with you. You must have just had an infection.’ I tried to tell him, ‘No, wait, there’s more I’m concerned about.’ These rashes and things were starting to cause alarms to go off. Anyway, he cut me off, and he said, ‘I can tell that you’re just one of those anxious patients who needs a little more coddling.'”
According to Dr. Kilkus, “One of the things that is fairly common is that women and people of color are more likely to experience medical gaslighting.” She further explains that this is due to societal narratives and stereotypes surrounding how women and people of color present with pain.
Dr. Kilkus highlights the bias that “women might be more anxious and they’re saying they’re in pain, but actually maybe, maybe it’s anxiety and it’s not actually pain.”
She also addresses the harmful stereotype that “people of color have a higher pain threshold than white people.” A 2016 study found that some medical students still think black patients feel less pain than white patients.
Dr. Kilkus emphasizes the need for awareness and self-compassion, stating that “it’s not conscious, it’s sort of unconscious biases that we all hold” and that experiencing medical gaslighting is not exclusive to certain individuals.
“The other thing I want to make sure that people hear is that this doesn’t just happen to women and people of color. It happens to everyone,” explains Dr. Kilkus, “It’s just more likely to happen to those populations or for people who have certain disabilities, people have certain chronic health issues, people who have difficulties with their weight. These are all sort of more vulnerable to medical gaslighting. But it can happen to anybody. It can happen to the most well-educated white male person that there is. It just can.”
“It was a little intense because I feel like I could feel him saying it’s so unlikely that this is colon cancer, especially colon cancer that’s causing you to bleed. But the alarms in my body and my mind were going off. I remember there was a point where it was like, ‘Either put me on the schedule or just call your security and they can escort me out because I need this colonoscopy.’”’ He was like, ‘Whoa, whoa, whoa, Miss. It’s okay. I will give you the colonoscopy.'”
If you find yourself being gaslit in a medical setting, Dr. Kilkus suggests simple ways to get your doctor to listen.
Ask your doctor for documentation: “It’s perfectly okay for you to say, ‘If you’re not going to follow up on this, then I would like you to document that in my medical record,’” says Dr. Kilkus. She explains that it might clue in the doctor that there may be a negative consequence of them not acting on your symptoms. For follow-up, Dr. Kilkus recommends looking at your medical notes to make sure it’s been added.
Keep a diary: “To keep track of symptoms and that could be duration, intensity, and frequency of symptoms,” says Dr. Kilkus “And that way you have that data to provide the physician. So they also know what has changed since the last time you came to them.”
Find a doctor you trust: I’m a huge fan of people finding other physicians if they don’t feel supported because there’s no point if you don’t have a doctor you can trust,” says Dr. Kilkus. “I really feel like that’s a foundational component of health care. And if you don’t have that, then you need to find a way to at least get as close to that as you can.”
Download 5 Tips For Overcoming Medical Gaslighting
One of the most effective ways for cancer patients to protect themselves from medical gaslighting is through self-advocacy. This means being an active participant in your own healthcare, asking questions, and speaking up if you feel like something isn’t right. Dr. Kilkus also recommends reaching out to your community or support network to find doctors who others have connected with.
“You’re not just a number. These doctors have a lot of patients, but you’re a human. You go in there and let them know you’re not a number. You have concerns about your health, and your doctors should be concerned about you..’
A crucial component of self-advocacy is education according to Dr. Kilkus. “The more information that you have, the more seriously you’re taken to in a health care setting,” says Dr. Kilkus. To better understand your rights as a patient, you can explore the Patient Bill of Rights. These also vary from state to state.
In addition to education, taking a compassionate approach can be helpful in your patient journey. “We all share challenges and experiences that we often feel like we’re walking with alone,” says Dr. Kilkus. “And I really feel like the more that these things are voiced, the easier it is for everyone to just slow down and be kind to one another because we’re all suffering. That’s part of being human.”
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Reclaim Your Energy: Effective Strategies for Fatigue Relief in CLL
Expert advice from Dr. Shazia K. Nakhoda
Written by:
Jenna Jones
Living with chronic lymphocytic leukemia (CLL) brings its own set of challenges, and one of the most prevalent and exhausting symptoms is CLL fatigue.
Fatigue is often described as having a complete lack of energy, despite getting enough sleep. For people with cancer, fatigue is incredibly common. Between 80% and 100% of people with cancer report having fatigue according to the American Cancer Society.
For CLL patients on watch-and-wait, understanding the degree of your fatigue may be a sign to start treatment. “I started treatment when my doctors discovered that my fatigue had become so debilitating that I couldn’t do the normal things I needed to do in my daily life,” says Jeff Folloder, CLL patient and advocate. “I couldn’t lift certain things. I couldn’t stay awake long enough.”
As a CLL patient, it can help to understand the impact of diet and lifestyle on managing fatigue and optimizing overall well-being. While specific dietary changes may not alter the course of CLL, adopting a healthy lifestyle can play an essential role in supporting your journey toward more vitality.
In this article, we explore dietary tips and wellness for CLL patients with Dr. Shazia Nakhoda, an Assistant Professor at the Department of Hematology/Oncology at Fox Chase Cancer Center. She also shares ideas about how to manage the psychological toll of CLL and promising new treatments on the horizon.
Remember to chat with your medical team before making any dietary or lifestyle changes based on this article. Everyone’s situation is unique, and healthcare professionals can offer personalized guidance that suits your specific needs.
Dr. Nakhoda explains that the amount of fatigue CLL patients feel is often linked to the degree of the disease circulating in their bloodstream. In addition, having an enlarged spleen and swollen lymph nodes can also contribute to the level of fatigue experienced.
Anemia in CLL is also a common cause of fatigue according to Dr. Nakhoda, “This happens because the CLLs are taking up too much room in the bone marrow and not allowing the healthy red blood cells to grow or because of an autoimmune phenomenon where the red cells are getting destroyed in circulation.”
For her patients who have very early CLL, Dr. Nakhoda typically advises them to rule out other causes of fatigue like cardiovascular disease or pulmonary diseases.
She adds, “We know that CLL is primarily driven by dysregulation of the immune system, which leads to unchecked inflammation and seems to be a major cause of fatigue.”
Using Diet to Manage CLL Fatigue
There is growing recognition that dietary choices and physical activity, can play a significant role in managing CLL.
According to Dr. Nakhoda, “While there is no specific nutrient or herbal supplement identified that can change the normal disease course for people with CLL, maintaining a healthy lifestyle through diet and exercise is crucial for patients with CLL.”
Dr. Nakhoda’s Diet Recommendation Summary
Choose a heart-healthy diet to minimize the risk of cardiovascular disease.
Include a variety of nutrients from fruits and vegetables in the diet, which is beneficial for cancer patients.
Opt for whole grain products and low-fat dairy options instead of processed foods high in salt and sugars.
Reduce inflammation in the body and enhance tolerance to CLL-directed therapies through dietary choices.
Follow a Mediterranean diet to improve rates of cardiovascular disease and achieve healthy weight goals.
Include healthier fats from extra-virgin olive oil, nuts, and fish in the diet, replacing unhealthy meats and fats.
She emphasizes the importance of choosing a heart-healthy diet to minimize the risk of cardiovascular disease and keeping blood sugars in check, particularly among patients with diabetes.
Dr. Nakhoda further urges, “Getting a variety of nutrients derived from fruits and veggies is beneficial for patients with cancer in general. Choosing whole grain products and low-fat dairy options over processed foods with high salt and sugars are also recommended.” These dietary choices can help reduce inflammation in the body and generally allow patients to better tolerate CLL-directed therapies.
Regarding specific diet recommendations, Dr. Nakhoda adds, “We have some great data showing a Mediterranean diet can improve rates of cardiovascular disease and achieving healthy weight goals. And there are some large epidemiology studies that show this may also benefit patients with cancer risk in general.” Again, she encourages a diet that includes healthier fats from extra-virgin olive oil and nuts and fish in place of unhealthier meats.
Finding Balance with CLL Fatigue
When it comes to managing CLL-related fatigue, Dr. Nakhoda recommends several approaches. She says, “In some patients who meet criteria for CLL-directed therapy, treating the CLL can make a huge difference in fatigue.”
However, for patients in the Watch & Wait phase or without clear indications for therapy, she highlights the importance of lifestyle modifications. “We have found exercise to make a huge impact on improving fatigue,” she says.
Starting with small activities like a 15-minute walk or yoga session and gradually increasing activity levels over time can be beneficial. “Overtime, the more activity patients are able to do, we see fatigue symptoms often improve,” says Dr. Nakhoda.
She also suggests optimizing sleep patterns and addressing any underlying medical conditions that may contribute to fatigue. She adds, “We know that patients with other medical conditions like cardiac disease or pulmonary disease can also contribute to fatigue so addressing any risk factors like coronary arterial disease or sleep apnea, for example, are important.”
Psychological Impact of Watch-and-Wait: Connecting with Others
Living with chronic lymphocytic leukemia (CLL) can be an emotional rollercoaster, especially during the Watch & Wait period when patients face uncertainty about their treatment timeline.
Dr. Nakhoda acknowledges the psychological toll that the watch-and-wait period can take on CLL patients. She says, “The stress of a new diagnosis of cancer, not knowing if or when you may need therapy, and grappling with the unknowns that come with this type of disease can be really tough.”
To cope with these challenges, she recommends connecting with other patients who have CLL through support groups and online networks. The CLL Society offers a guide to helpful support groups. Dr. Nakhoda notes that support groups can provide valuable encouragement and make a significant difference in managing the emotional fatigue associated with the waiting period.
Promising CLL Treatments
As CLL patients continuously seek new avenues for treatment, Dr. Nakhoda highlights the dynamic nature of managing chronic lymphocytic leukemia, with ever-evolving therapies and approaches that are reshaping the CLL landscape.
“The way we treat CLL is rapidly evolving. The survival data we had from even 5 years ago is now outdated. We have new drugs approved every couple of years that are quickly changing the way we treat patients.”
She highlights the emergence of non-covalent BTK inhibitors as a promising new class of drugs. “This type of drugs works similarly to the first and second-generation BTKi inhibitors (ibrutinib, acalabrutinib, zanubrutininib) but binds in a different way to the receptor.”
She also mentions pirtobrutinib, which was recently approved by the FDA for patients with mantle cell lymphoma. “Hopefully, it will receive approval for other B-cell lymphomas like CLL in the near future. It seems to be effective in patients who previously were intolerant or resistant to another BTK inhibitor, and has a very favorable side effect profile,” she says.
Minimal Residual Disease Testing
Another important aspect of patient care is the restorative space between treatments. “I hear from patients that getting time off of therapy is really important as well. There is exciting data about using minimal residual disease testing, which is a method of detecting very small levels of microscopic disease in the blood or bone marrow as a marker of deep response. We are trying to understand how to use these tests to help identify which patients may be spared from continuous use of certain drugs and get more time off of therapy.”
While specific dietary changes may not alter the disease course of CLL, Dr. Nakhoda emphasizes the importance of maintaining a healthy lifestyle through diet and exercise. Fatigue is a common symptom of CLL, and managing it involves a combination of treating the disease itself and incorporating lifestyle modifications. Connecting with other CLL patients through support groups and staying informed about promising new treatments can also be beneficial for patients and their overall well-being.
Easy Mediterranean-Inspired Recipes For CLL Patients
Here are five super simple recipes that align with Dr. Nakhoda’s dietary recommendations for CLL patients:
1. Mediterranean Quinoa Salad:
– Ingredients:
– 1 cup cooked quinoa
– Assorted chopped vegetables (such as cucumber, cherry tomatoes, bell peppers)
– Kalamata olives, pitted and halved
– Feta cheese, crumbled
– Fresh parsley, chopped
– Extra-virgin olive oil and lemon juice (as dressing)
– Instructions:
1. In a bowl, combine cooked quinoa, chopped vegetables, olives, and feta cheese.
2. Drizzle with extra-virgin olive oil and lemon juice.
3. Garnish with fresh parsley. Mix well and serve.
2. Veggie Stir-Fry with Brown Rice:
– Ingredients:
– Assorted vegetables (such as broccoli, carrots, bell peppers, snap peas)
– Tofu or lean protein of choice
– Low-sodium soy sauce
– Garlic, minced
– Ginger, grated
– Cooked brown rice
– Instructions:
1. In a wok or skillet, heat a small amount of olive oil over medium heat.
2. Add minced garlic and grated ginger, and sauté for a minute.
3. Add the vegetables and tofu (or protein) to the pan and stir-fry until cooked but still crisp.
4. Stir in low-sodium soy sauce to taste.
5. Serve over cooked brown rice.
A Simple Fish Recipe
3. Grilled Lemon Herb Salmon:
– Ingredients:
– Fresh salmon fillets
– Lemon juice
– Fresh herbs (such as dill, parsley, or basil)
– Extra-virgin olive oil
– Salt and pepper to taste
– Instructions:
1. Preheat the grill to medium-high heat.
2. In a small bowl, combine lemon juice, chopped fresh herbs, olive oil, salt, and pepper.
3. Brush the mixture onto the salmon fillets.
4. Grill the salmon for about 4-6 minutes per side, or until cooked through.
5. Serve with a side of steamed vegetables or a mixed green salad.
4. Chickpea and Vegetable Curry:
– Ingredients:
– 1 can chickpeas, drained and rinsed
– Assorted vegetables (such as cauliflower, sweet potatoes, spinach)
– Curry powder or paste
– Coconut milk (light or full-fat)
– Fresh cilantro, chopped
– Instructions:
1. In a large pan, heat a small amount of olive oil over medium heat.
2. Add the vegetables and sauté until slightly tender.
3. Stir in curry powder or paste to taste and cook for another minute.
4. Add the chickpeas and coconut milk to the pan and simmer for about 10-15 minutes, or until the vegetables are cooked through.
5. Garnish with fresh cilantro and serve with brown rice or quinoa.
1. In a glass or bowl, layer Greek yogurt, fresh fruits, and a drizzle of honey or maple syrup if desired.
2. Repeat the layers until the container is filled.
3. Top with a sprinkle of granola or nuts.
4. Enjoy as a nutritious breakfast or snack option.
These simple and delicious recipes incorporate the key principles of a Mediterranean diet, providing CLL patients with a variety of nutrients from fruits, vegetables, whole grains, and healthier fats. Remember to consult with your healthcare team or a registered dietitian for personalized dietary recommendations based on your specific needs and preferences.
1st symptoms: Tightness, lumps in left side of neck, severe pain in left shoulder, enlarged spleen Treatment (CLL): 6 cycles of EPOCH, clinical trial for DuoHexabody-CD37
Chronic lymphocytic leukemia patient advocate Andrew Schorr has been living with CLL for 26 years.
In this conversation, he talks with hematologist-oncologist Dr. Nitin Jain from the MD Anderson Cancer Center who specializes in patients with CLL and ALL.
BTK inhibitors: choosing the right drug for the right patient
Andrew Schorr: With us is one of my favorite CLL researchers and experts, Dr. Nitin Jain, from MD Anderson.
Patients like me have lots of questions. We hope we can live a long, full life with CLL. You have more options than ever before.
One of the areas is BTK, Bruton tyrosine kinase inhibitors. We have Imbruvica, acalabrutinib or Calquence, [and] zanubrutinib that may be approved in CLL before long but is used in some other conditions. These drugs have made a big difference for people. What [do] we know about them now and how [do] you choose which one is right for which patient?
Dr. Jain: BTK inhibitors are oral drugs. They target a specific protein called BTK on the CLL cells.
The first one was ibrutinib. The second-generation ones are acalabrutinib and zanubrutinib. Zanubrutinib is not yet approved for CLL, but we are expecting it to be approved pretty soon, maybe in the next couple of months.
There’s a third-generation BTK inhibitor called pirtobrutinib, which is not yet FDA-approved, but it’s on track and there’s a lot of data presented about this drug.
Currently, FDA approved for CLL are two BTK inhibitors: ibrutinib and acalabrutinib. In terms of deciding which drug to choose between these two, for my patients, I really look at the efficacy and safety profile of these drugs.
There are a couple of trials done in patients with relapsed CLL, [those] who had prior therapy for their CLL then their disease came back. Half of the patients were given acalabrutinib [while the other] half of the patients were given ibrutinib.
What those studies showed is that those drugs were equally effective but acalabrutinib [had] less toxicity. Based on that and some other data, I preferentially [use] acalabrutinib these days as the BTK enabler of choice for my patients.
Again, that argument may change a bit when zanubrutinib comes [into] the picture, and certainly down the line when we get pirtobrutinib. That would be another exciting addition to the field of BTK inhibitors.
Andrew: Okay, so that’s really going to be physician and patient choice, it seems. They’re all good drugs.
Dr. Jain: It will come down to the physician, how comfortable they are using a particular drug for their patients, and the medical data and how they look at it.
I present all these options to my patients, discuss some of the clinical trial data and big picture view, give my recommendations to the patients for the treatment, and follow what their wishes are.
Andrew: Then also in this discussion is what other conditions a patient might have, right? Do they have a heart condition or other things that would determine which medicine you might go with, correct?
Dr. Jain: You’re absolutely correct. One of the things we [are] concerned about is the side effect profile. Some side effects are bone aches, muscle aches, diarrhea, and skin rash. [They] certainly can be an issue and some patients require dose reductions, especially for ibrutinib.
Some things are somewhat less common but can be more serious, such as atrial fibrillation, which is an abnormal rhythm of the heart, hypertension, which can become a problem for some patients, or bleeding issues.
If a patient has some of those medical conditions ongoing — heart issues, recent heart attack, or heart rhythm issues — then many times, I try to stay away from BTK inhibitors and use venetoclax, which is a Bcl-2 inhibitor. Among the BTK inhibitors, that will really make the case for second-generation agents, which are less toxic in terms of cardiovascular side effects.
Andrew: There’s data coming out related to zanubrutinib, not yet approved, but whether there are [fewer] concerns related to that for some patients, am I right?
Dr. Jain: Yes, correct. Similar to acalabrutinib, zanubrutinib was also studied head to head [compared] to ibrutinib in relapsed CLL. In that study, they showed that there was less atrial fibrillation with zanubrutinib compared with ibrutinib. That’s the first time two BTK inhibitors were compared head to head and they’re also showing that one is more efficacious than the first.
Ibrutinib
Andrew: Let’s just talk about the one that’s been around a long time: ibrutinib. There are thousands and thousands of patients on it. If they’re doing well, there is not necessarily a reason to change, right?
Dr. Jain: I agree with you and I think that’s a very important question from a patient standpoint. I get asked this question all the time in the clinic because ibrutinib certainly was the first drug [on] the market. It really changed how we manage these patients and really dramatically improved the outcomes of our patients.
But now, we are seeing some side effects of these drugs. There are patients who have been on ibrutinib for years and years — five years, seven years, nine years — and they are tolerating the drug well, [with] no side effects, [and] disease is well controlled.
I’m not switching those patients to a different agent at this time. We continue to use ibrutinib. However, if they’re starting [to get] side effects, then we look into moving to a different agent.
Andrew: There’s a significant percentage of CLL patients who are on watch and wait for an extended time. Is there any new thinking about doing anything differently now or is that still the standard in CLL?
Dr. Jain: As a CLL research group, we are investigating whether you can treat certain patients with CLL who are [at] high risk for disease progression early on, for example, patients who have deletion 17p and high-risk disease unmutated IGHV gene.
These are patients [who] we expect to progress a bit faster. Their time to treatment after CLL diagnosis is probably shorter than other patients with CLL.
There are ongoing randomized studies in the United States where patients with CLL are randomized. Either [they are treated] right away with venetoclax-based therapy or we watch these patients and whenever the disease progresses, which could be several years down the line, at that time, they receive venetoclax-based therapy.
That’s an ongoing and very important trial in the field. We’ll have to wait to get that medical data.
The current standard remains the same. We should watch these patients until they meet our CLL treatment criteria, which is basically having low blood counts, low hemoglobin, low platelets, big spleen, big liver, big lymph nodes, or significant symptoms from the disease affecting [their] quality of life. If you meet those criteria, then we treat [you].
Venetoclax + ibrutinib
Andrew: We talked about single-agent therapy with BTKs primarily, but you gave a presentation with longer data on ibrutinib plus venetoclax. Tell us about that and whether that combo has promise for people.
Dr. Jain: Both ibrutinib and venetoclax are FDA-approved for patients with CLL. Back in 2014, our group and many other groups showed data that combining these two drugs together is actually [more] synergistic for the two in the lab. Based on that, we started this clinical trial of combining ibrutinib plus venetoclax, two oral drugs together, for patients with CLL.
We treated 120 patients at MD Anderson. These patients have never received treatment so this is the first treatment for CLL.
Almost 70% of patients achieved MRD-negative remission in the bone marrow after getting these two oral drugs. We saw very few relapses over the course of four years. Our four-year progression-free survival was 94%.
The importance of getting an infusion vs. oral medications
Andrew: How important is it to get that infusion versus these oral medicines?
Dr. Jain: That’s an unanswered question in the CLL field right now. We know that the CD20 antibody infusion, whether it’s rituximab or obinutuzumab, works very well when we combine it with chemotherapy [and] also works very well when you combine venetoclax.
There is some conflicting data when you combine rituximab with ibrutinib; it doesn’t really work that well with ibrutinib. However, obinutuzumab, which is second-generation rituximab, works a bit better when you combine [it] with acalabrutinib.
Now when we combine ibrutinib plus venetoclax together, the two most potent drugs we have for CLL, we are already seeing very high rates of remissions.
The question is: can you improve that further by adding an antibody? This is the question of doublet versus triplet. Two drugs versus three drugs.
When we designed the study, we did not elect to use the antibody because we thought [that] antibody would add more toxicity than benefit. However, there are other medical data with triplets, which [have] been reported as well.
Right now, it’s very difficult to say because all these drugs are very, very effective regimens. Doublets versus triplets, it’s really difficult to tease out if one is better than the other.
There are ongoing randomized controlled trials where they are evaluating doublets versus triplets. I’m hoping we’ll hear from some of these trials in one to two years. Then we can have a more informed decision [about] whether you really need to have CD20 antibody when you’re using these two older drugs together.
What is the advantage of a third-generation BTK inhibitor?
Andrew: You’ve mentioned pirtobrutinib, which is a third-generation BTK in trials. What would be the advantage of a third generation? How would that be different?
Dr. Jain: Pirtobrutinib, previously called LOXO-305, is a third-generation BTK inhibitor. The main advantage here is that, unlike the first two generations of BTK inhibitors, namely ibrutinib, acalabrutinib, and zanubrutinib, they bind to a very specific protein pocket.
They bind to a residue called cysteine 481S, which attaches to these drugs. These patients, when they relapse, develop resistance mutations and then these drugs cannot bind to that pocket.
However, pirtobrutinib is a non-covalent inhibitor. It does not need that residue to bind. It just blocks the pocket. That’s why it’s able to work for patients who have failed ibrutinib, acalabrutinib, or zanubrutinib. That’s one advantage that pirtobrutinib can work against patients who have failed previous BTK inhibitors.
The second advantage is safety. We have seen [an] excellent safety profile of this drug with very few patients having atrial fibrillation, bleeding complications, or any other major issues. What we know so far is that this drug works very well and it’s also very well tolerated.
New data on Richter’s Transformation
Andrew: A small percentage of CLL patients develop a much more aggressive condition called Richter’s Transformation. Is there progress being made there? Any news that gives hope in treatment for Richter’s?
Dr. Jain: Richter’s Transformation remains a tough disease. We are working on several clinical trials looking at new pathways to control the disease, including immune checkpoint inhibitors using venetoclax. One was actually pirtobrutinib.
When you use this drug as a single agent for patients who had Richter’s Transformation, almost half of the patients respond to the treatment and the response lasted for several months. That is one important agent for patients with Richter’s Transformation.
There’s also this new class of drugs called bispecifics, which on one hand bind to a protein called CD20, which is on the cancer cells, the CLL cells, or Richter cells, and then on the other hand, they bind to a protein called CD3, which is on the T cells.
What they do is bring the cancer cell and the T cells together. That has been shown in several trials to be very effective in diffuse large B-cell lymphoma. There is data presented [on] clinical activity for patients with Richter’s Transformation as well.
Those are two important classes of drugs being pursued [in] clinical trials.
The third one is CAR T-cell therapy that also several studies have started to evaluate for Richter’s Transformation, but no specific medical data was reported.
Andrew: Okay, let’s pull all this together. People are still in watch and wait, and that’s fine if their quality of life is not diminished, their blood counts are strong, etc. But when they move on to treatment now, it seems like there’s a discussion about which BTK might be right for them and whether or not they should consider BTK, still investigational, with a second drug like venetoclax. Is that correct?
Dr. Jain: Yes, correct. Absolutely.
Andrew: You have this whole line of tools that we haven’t had for that long and for people with aggressive transformation, there seems to be a glimmer of hope as well. If you had a new patient today, would you say that the likelihood is they can probably live a long and full life? You have medicines that may not cure the CLL — although sometimes you feel CLL is cured — but they can live long and live well.
Dr. Jain: Oh, absolutely. That’s exactly what I tell my patients these days, especially patients who are newly diagnosed. [When] they come for the first visit, obviously, [there are] a lot of questions in their mind. Hopefully, all patients with CLL can expect to live a normal lifespan with good quality of life.
We have excellent medicines for patients right now and the field is improving. [We have] other important, better medications, safer medications, immune therapies, [and] CAR T-cell therapies coming down the line.
I really, truly believe that we’ll be able to have patients with CLL have a normal lifespan. An important point is that you don’t need [a] cure to live a normal lifespan in the context of CLL.
You could have a small amount of disease present, but if it’s not interfering with your quality of life, your blood counts, your health, [and] what you do in your life, you can just continue to live with a very low level of the CLL.
Overall, we’re in very, very good shape in terms of the treatment paradigm for CLL patients. We’re all making really good progress.
CAR T-cell therapy
Andrew: I know CLL patients who’ve had CAR T-cell therapy. It is not yet approved. What is the future of chimeric antigen receptor T-cell therapy for CLL? It’s approved in some other blood cancers, but not yet in CLL.
Dr. Jain: I think this is one of the biggest advances in the last few years, I would say, in the context of blood cancers. It’s not approved for CLL, but [for] lymphomas, leukemias, [and] myeloma.
The field has somewhat lagged behind and we don’t have much clinical data yet. There are [a] few trials, which have been reported, but not very many.
There’s a lot of interest and discussion in general with investigators to develop CLL-specific clinical trials with some new constructs.
CAR T-cell therapy is very dependent on what kind of genes are inside of the CAR so it’s very technologically heavy where even small changes in what gene you insert can make big differences [in] how patients do. There’s a lot of effort happening [on] the lab side to draw up new constructs, which specifically could work for patients with CLL, also for patients with Richter’s Transformation.
That’s an area where I think many more clinical trials will come. In one to two years, I think we’ll have somewhat more clarity of the data in terms of CAR T-cell therapy for patients with CLL as well as for Richter’s Transformation.
Andrew: Okay. What you’re touching on is: can we get the immune system to fight the CLL and do it long term, correct?
Dr. Jain: Correct. From [the] chemoimmunotherapy era to target therapy era, now we are asking our immune system to dress [for] the job and take care of stuff.
Immune therapy works very well for melanoma, for solid tumors. So can we use our immune cells to help get rid of the CLL?
Andrew: It sounds like a great time of progress for those of us living with CLL. With the current therapies, some that may be approved even in the short-term, combinations, and then this work going on in immune therapy that’s happened in some other areas and where this pays off for us.
Dr. Jain, thank you so much for being with us on The Patient Story. We wish you well with your research and your clinical care of patients at MD Anderson.
1st symptoms: Tightness, lumps in left side of neck, severe pain in left shoulder, enlarged spleen Treatment (CLL): 6 cycles of EPOCH, clinical trial for DuoHexabody-CD37
