Tag Archive for: CLL diagnosis

Reasons to Get Chronic Lymphocytic Leukemia Second Opinions

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Reasons to Get Chronic Lymphocytic Leukemia Second Opinions from Patient Empowerment Network on Vimeo.

Why are chronic lymphocytic leukemia (CLL) second opinions a  good idea? Expert Dr. Ryan Jacobs shares his perspective on CLL second opinions and how they can help in patient care.

Dr. Ryan Jacobs is a hematologist/oncologist specializing in chronic lymphocytic leukemia from Levine Cancer Institute. Learn more about Dr. Jacobs.

See More from START HERE CLL

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Why Is Early Stage Chronic Lymphocytic Leukemia Treatment Delayed?

 Why Does Bruising Occur in Chronic Lymphocytic Leukemia?

 Should CLL Patients Worry About Enlarged Lymph Nodes?

Should CLL Patients Worry About Enlarged Lymph Nodes?

Transcript:

Lisa Hatfield:

So say one of your patients, seeing you or seeing a hematologist, maybe a local hematologist who doesn’t see a high volume of CLL, and they ask if…what would, what do you think…or they ask of their doctor, what do you think of me getting a second opinion on my diagnosis? Because patients are scared for one thing and they want to make sure that they’re making the right decisions for themselves. How do you feel about patients seeking a second opinion?

Dr. Jacobs:

I always support it. Of course, with me, I am often the second or even higher number of opinions that has received. But I certainly, I’m not there at the biggest cancer center in the world. I trained there, but that’s not where I’m at now. So I’ve had patients that have gotten even a second or third opinion from me and then go off and get a fourth opinion at MD Anderson. So, in terms of what I want patients to understand with opinions is, one, if you get a lot of opinions, that can just make it kind of difficult. And, so I don’t know if I would really support a large number of different opinions.

I think certainly getting a second opinion is reasonable. But whenever you’re seeking another opinion, I think it really only makes sense if you’re going to a higher level of specification. So certainly it makes sense to go from a general oncologist, getting a second opinion from somebody like myself that sees a lymphoma as a specialty and does research in CLL. But if you’re already seeing a CLL specialist to then seek another one, I think it, yeah, maybe if you want to go to even a bigger cancer center or someone that has maybe published over more years, that’s fine.

But it certainly doesn’t make sense to go from one CLL specialist to somebody that is maybe even less focused in CLL. And sometimes you’d have to kind of be aware of just where you’re at. In general, the specialists are going to be at the larger cancer centers. You might find the name of a larger cancer center in a small cancer clinic. And it’s unlikely that just because the name of that well-known cancer center is on a small clinic site that you’re going to have access to a lot of specialists at that site, usually to support specialists. You’re having to be at a large, usually urban-located cancer center.

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CAR T-Cell Therapy Care Partners: Tools for Accessing Support

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CAR T-Cell Therapy Care Partners: Tools for Accessing Support from Patient Empowerment Network on Vimeo.

How can care partners access support during the CAR T-cell therapy process? Expert Dr. Amitkumar Mehta discusses the support patients may need during CAR T and resources for accessing patient and family support.

Dr. Amitkumar Mehta is Director of the Lymphoma Program and CAR T Program and Medical Director of the Clinical Trials Office at O’Neal Comprehensive Cancer Center at UAB. Learn more about Dr. Mehta.

See More from The Care Partner Toolkit: CAR T-Cell Therapy

Related Resources:

Why Is a Care Partner Essential for Patients Undergoing CAR T-Cell Therapy?

Why Is a Care Partner Essential for Patients Undergoing CAR T-Cell Therapy?

 What Is CAR T-Cell Therapy for Myeloma?

What Is CAR T-Cell Therapy for Myeloma? 

 How Is CAR T-Cell Therapy Changing the Myeloma Treatment Landscape?

How Is CAR T-Cell Therapy Changing the Myeloma Treatment Landscape? 

Transcript:

Katherine:

What support services or resources are available for care partners of patients who are undergoing CAR T-cell therapy?

Dr. Mehta:

Unfortunately, I have to say that there are not that many support systems existing. It depends on the center most of the time. And, remember, that many of the centers – you know, CAR T is not offered at every community center.

Usually, they are certified centers. So, on an average, patients might have to travel to go to the center, right? So, it’s mainly center dependent. Now – and, you know, like, if I talk about my center, as I was mentioning, that I like to have the caregiver as a part of the process so they are aware what the patient is going through. Second person is – or second team person is our clinic nurse or CAR-T coordinator who actually talks to the patient in depth as well as patient’s caregiver.

Now, if you are living farther away from the center, three hours, four hours, five hours, in that case, where do I lodge myself, whether there is any other support system? We are going to stay here. Where I’m going to eat? Where is the center? Where do I have to them, whether I have to take them daily or not? So, those kinds of information is provided mainly by the center.

And centers also have many other support systems that we can tap in. The most important is to highlight is CAR T is not cheap. It’s very expensive treatment, right? So, there’s an extra step of insurance approval. Well, what is your copay? So, financial toxicity so to speak also come in picture and not only for the patients but their caregiver also.

We need to sit down if they need additional help. What other sources? What are the other agencies or maybe a local church or local community it can help? One other thing that our center has done, which has helped quite a bit, we have a patient ambassador. There was a patient who had gone through CAR T, and he had such an experience that he decided to offer his service to other patients who were going through CAR T. And he is always available.

So, he always – whenever he comes for the clinic visit and says “I’ll be happy to talk to anyone including his family, right, his mother and his father. They’re available that if [they support the patient], the caregiver, we would like to talk to them. And we would like to share our experience. And, if they have any questions, we can share the resources available to go through CAR T because, at the end, it’s a potentially curative option.

Why Is a Care Partner Essential for Patients Undergoing CAR T-Cell Therapy?

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Why Is a Care Partner Essential for Patients Undergoing CAR T-Cell Therapy? from Patient Empowerment Network on Vimeo.

How can care partners access support during the CAR T-cell therapy process? Expert Dr. Amitkumar Mehta discusses the support patients may need during CAR T and resources for accessing patient and family support.

Dr. Amitkumar Mehta is Director of the Lymphoma Program and CAR T Program and Medical Director of the Clinical Trials Office at O’Neal Comprehensive Cancer Center at UAB. Learn more about Dr. Mehta.

See More from The Care Partner Toolkit: CAR T-Cell Therapy

Related Resources:

CAR T-Cell Therapy Care Partners: Tools for Accessing Support

 What Are the Risks of CAR T-Cell Therapy?

What Are the Risks of CAR T-Cell Therapy? 

 How Is CAR T-Cell Therapy Changing the Myeloma Treatment Landscape?

How Is CAR T-Cell Therapy Changing the Myeloma Treatment Landscape? 

Transcript:

Katherine:

What is the role of a care partner of a patient who is undergoing CAR T-cell therapy?

Dr. Mehta:

CAR T-cell therapy is very important therapy and has evolved as a potentially curative therapy in a relapse setting. It does have a downside. And downside, when I say is side effects, which needs to be monitored closely, and it has to be detected early and intervened early, right? Steroids, as well as tocilizumab (Actemra) or anti-IL-6 treatment, are very, very effective in mitigating some of the side effect of CAR T.

But the whole process is very involved, right? You have a patient identified. Then you go through collection. Some people might get some bridging therapy, then chemotherapy, and then they get admitted. Importantly, after the infusion for two months, some of them could have neurological side effect, and that’s why for label and for safety, the patients cannot drive for two months or operate heavy machinery.

So, the whole process requires a good support. In my opinion, when we screen a patient, that “Okay, somebody’s referred to me, or my patient going through a CAR-T process,” how to make sure that they have a caregiver. And caregiver is immensely important, not only for the safety but also moral support for the patient, right?

Katherine:

Yeah.

Dr. Mehta:

And, importantly, what I make sure is that they’re part of the whole discussion. When we sit down and discuss the whole process, side effects, what’s going to happen, they are there.

They know what their loved one is going to go through. So, caregiver support is immensely important. In some patients, unfortunately, they don’t have a caregiver support. For the sake of safety, we might have to give them opportunity to see whether they can actually secure some sort of support. Maybe their distant family member living in a different state and if they can live with them, or their neighbor, or their close friends. If they can bring them to the clinic visit so that we can also discuss with them the whole process. So, caregiver is a very, very important and vital part of the whole process of CAR T.

How Is Flow Cytometry Used in CLL?

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How is Flow Cytometry Used in CLL? from Patient Empowerment Network on Vimeo.

Chronic lymphocytic leukemia uses flow cytometry as part of testing methods, but how is it used? Watch to learn about the information provided by flow cytometry tests and how the information is used for CLL patients.

See More from START HERE CLL

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Transcript:

Chronic lymphocytic leukemia (CLL) can be either a slower-growing or faster-growing type depending on the patient. There are several tests that CLL specialists use in diagnosing the condition – with flow cytometry being one of the testing tools.

Flow cytometry provides information about particle or cell characteristics including:

  • DNA gene expression
  • Total DNA
  • Cell structure
  • Cell size
  • Newly-created DNA
  • Amount and type of specific surface receptors
  • Intracellular proteins
  • Transient signaling

Dr. Lyndsey Roeker:                

“So, at diagnosis flow cytometry is the first test done, and what that means is, you take all of your white blood cells in your blood, and you run them through a fancy machine that puts them into buckets. So, you have a bucket of your normal neutrophils, a bucket of your normal lymphocytes, and then you find this bucket of cells that look somewhat unusual. And those have a specific look, if you will, and if they look like CLL cells, that’s how we make the diagnosis.”

The properties found in flow cytometry help to determine the type of CLL that a patient has. CLL specialists then use flow cytometry results along with other blood tests, a patient’s medical history, and other signs and symptoms to establish CLL prognosis and treatment options. Flow cytometry is a key test that confirms CLL diagnosis by checking a patient’s bone marrow or blood cells for signs of CLL, and test results are used to help determine optimal care for each patient.

CLL Patient-Expert Q&A

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Dr. Nadia Khan | CLL Patient-Expert Q&A from Patient Empowerment Network on Vimeo.

Is CAR T-cell therapy a cure for chronic lymphocytic leukemia (CLL)? What specific lab tests will I need to get a second opinion? CLL expert Dr. Nadia Khan answers questions from CLL patients and families. 

Have a question for a future Patient-Expert Q&A Email us: question@powerfulpatients.org with subject line: CLL Patient-Expert Q&A 

See More from START HERE CLL

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What is Watch and Wait in CLL?

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How to Approach Side Effects with CLL Medications

Transcript:

Mary Leer:

Dr. Khan, first of all, thank you for being part of this program. 

Dr. Nadia Khan:

Thank you so much for inviting me to participate.

Mary Leer:

We have a question from Larry about side effects. Larry says: I’ve been fighting side effects with each medicine. Will the correct answer for side effects in CLL always be to stop the medicine? 

Dr. Nadia Khan:

Larry, thank you for your question. It is an excellent one, and this is something that we encounter on a very regular basis in CLL patients who are on targeted therapies. The side effects occur frequently in patients taking BTK inhibitors, in patients taking PIK inhibitors, and we have some side effects reported on BCLT inhibitors as well, typically side effects on all of these targeted therapies can be managed with either dose reduction or supportive therapies, and we don’t necessarily have to stop a medication due to a side effect that is encountered, and of course, it would depend on the type of side effect and the severity of the side effect before deciding to pause therapy for a time or to dose reduce or add other medications to help.

Mary Leer:

Sarah has a question about side effects. How can I tell if side effects are from CLL, my medicine, or just a part of aging? 

Dr. Nadia Khan:

Thanks for that question, Sarah. It can be a challenge to tease out the cause of any given complaint, whether the symptom is due to underlying other medical conditions, the medications a patient is on, their CLL therapy, their CLLl itself is something that we find to be challenging, and it can often be a process of elimination and understanding when side effects started and how they are related to the known side effect profile of a therapy is often a starting point. Depending on the side effect, we may decide to institute a treatment holiday, and if the side effect improves or resolves during the treatment holiday, it’s more clear that the side effect is due to the medication in question. If the side effect persists during that period of time, then it’s more likely to be due to something else.

Mary Leer:

George asks, are there any long-term side effect risks for CLL patients? 

Dr. Nadia Khan:

That’s a great question, George. It really would depend on the therapy being instituted and when in the chemoimmunotherapy era for CLL patients, we have a very different perspective of what short-term and long-term side effects were and are for those patients who have been treated with chemoimmunotherapy. For patients treated with targeted therapies and immunotherapy combinations today, there tends to be fewer serious long-term side effects when looking at the various drug classes. For example, BTK inhibitors, there is a risk of atrial fibrillation that remains constant throughout the course of therapy, and if a patient is on therapy for one year or 10 years, they can develop that particular side effect. High blood pressure can be significant with BTK inhibitors as well, and that risk also tends to be stable. In terms of infection risk, there is relative immunosuppression with all CLL therapeutics, and so our concern, more recently has been focused on COVID infection, serious bacterial and viral infections tend to be less frequent, we don’t institute prophylaxis for those infections because they tend to be so few and far between in the patients that we’ve treated. 

Mary Leer:

Thank you, Dr. Khan. Here’s a question from Richard:  I am a CLL patient currently on “watch and wait.”  When is the right time and what tests should have been performed before seeing a CLL specialist? 

Dr. Nadia Khan:

Richard, thank you for your excellent question. There are a number of tests with respect to CLL that help us to prognosticate more accurately, and those would include either a FISH panel, fluorescence in situ hybridization for CLL which identifies this common amplification and deletions that have been described in CLL. Additionally, an IgVH mutational test and a TP53 sequencing test would be the three basic prognostic tests used to identify what kind of CLL a patient has. This testing should be repeated at any point wherein a patient is changing therapy or at any point where there’s a change in the clinical status of the patient. Outside of these standard tests, there are other molecular tests that can be ordered and are commercially available for use… For use by clinicians. These molecular tests can also identify changes within the CLL that can help to prognosticate at this time, outside of the standard tests that I mentioned to you, there are no proven benefits to other testing, but the results of additional testing can just really help inform your clinician about the likelihood of you needing treatment in the near future and the likelihood of response to therapy. 

Mary Leer:

This question comes from Laurie. How common is it for CLL patients to develop a second gene mutation? 

Dr. Nadia Khan:

Laurie, Thanks for that question. It is not common for most call patients to have significant alterations in the genetic landscape of the CLL. With that being said, there are a few notable exceptions for CLL with TP53 dysfunction or complex cytogenetics, there is a higher likelihood that there will be genetic instability in those CLL clones. Therefore, it’s important to retest for changes if there is a change in the biology of the CLL, if there is a progression on therapy, for example, or at the time when a new therapy is planned.

Mary Leer:

Yolanda’s question is, what is CAR T therapy and who is eligible? 

Dr. Nadia Khan:

Thank you, Yolanda. This is a question that I get asked very frequently. CAR-T therapy is an exciting cellular therapy that has been FDA-approved in a number of lymphomas, and it is currently not FDA-approved for patients with CLL. So at this time, CLL patients can receive CAR-T therapy in the setting of a clinical trial only, and it is typically reserved for those patients who have progressed or relapsed after multiple lines of therapy and for whom there is no alternative therapy for consideration. Often, it is considered in the context of the clinical trial prior to the use of allogeneic stem cell transplant, because the results of allo transplant and CAR-T seemed to be fairly comparable. CAR T therapy, however is much better tolerated than allo transplant, both of these modalities are very rarely employed for our CLL patient today because of the very effective targeted therapies and immunotherapies that we have to use. 

Mary Leer: 

Dr. Khan, Chuck’s question is, what are the side effects of CAR-T cell therapy? 

Dr. Nadia Khan: 

Thank you, Chuck. For your excellent question, CAR-T-therapy is associated with two main types of side effects, one is Cytokine Release syndrome or CRS, which happens within the first two weeks of receiving CAR cells, and that can manifest as fevers, chills, a drop in blood pressure, shortness of breath, and the requirement of oxygen. When that happens to patients, there are medications that are given to help improve those cytokine-mediated events. Another major side effect with CAR-T therapy is neurotoxicity, which also happens within the first 14 days in some patients who receive CAR therapy, and that can manifest as anything from a headache to more concerning confusion, seizures and coma. CRS happens commonly in patients who receive party therapy and is usually managed very successfully with anti-inflammatory therapies given intravenously in the hospital and can be used for patients even who get outpatient CAR-T therapy.

Dr. Nadia Khan: 

When patients do suffer with neuro toxicities, intravenous therapies are also employed to combat that, and when necessary, patients might require escalation to an intensive care setting when these toxicities are very severe.

Mary Leer: 

Dr. Khan, is CAR T therapy a cure for CLL? 

Dr. Nadia Khan: 

Thank you for your question, Bernard. CAR-T therapy has been curative for a minority of patients who have been treated with CARs on clinical trials, and unlike other lymphomas In CLL, there hasn’t been an FDA approval as yet for CAR-T therapy, and we are hopeful for that to change in the future as CARs are modified and may potentially become more effective at eradicating the CLL and hopefully resulting in better side effect profiles and patients who do receive CAR-T therapy, the majority of patients who have received CARs in CLL studies have not had durable remission, unfortunately.

Mary Leer: 

Dr. Khan, what is conditioning therapy and why is it given prior to infusion of the CAR T cells?

Dr. Nadia Khan: 

Thank you, Samuel. Conditioning therapy is a course of – a briefer course of chemotherapy that’s given just prior to CAR-T therapy, really to prepare the body in a way to receive the CARs, and it makes the CARs more effective when there has been a level of immunosuppression to allow the CARs to expand more freely after they have been re-infused into a patient.

Mary Leer: 

Okay, here’s a question that Sandra asks, I’m preparing for CLL treatment, can I take my vitamins, herbs, or other supplements during treatment?

Dr. Nadia Khan: 

Thanks for that excellent question, Sandra. It’s so important to review all of your medications with your provider before starting any therapy during the course of your CLL treatment, drug interactions with herbals and over-the-counter medications can result in serious side effects, some over-the-counters and Herbals can inhibit the effectiveness of CLL therapy. So it’s important to discuss these with your provider on a case-by-case basis.

Mary Leer: 

Dr. Khan, here’s a question that I think many are probably thinking of right now, what tests do you give patients to see if CLL treatment is working?

Dr. Nadia Khan: 

Thank you, Jessica. During the course of CLL treatment and at the end of a time-limited treatment course, we’re assessing for responses, so as a patient is going through their treatment, we may decide to re-image to determine if there has been debulking of lymph nodes. And depending on the treatment that we’re administering and where the lymph nodes are located, we may decide to do imaging sooner or later, so for example, if there are palpable lymph nodes while a patient is on therapy, and we can measure these readily by physical exam in the clinic, we may not feel as compelled to re-image at an early time point, if there is valiantly or in large seen that is hard to palpate. And we want to understand if treatment is working after approximately three to four cycles of therapy, we would assess for a good response to treatment if clinically, it also does appear that patients are responding, and if there was any question as to respond, we would image at an earlier time point when patients are being treated with a Venetoclax [VENCLEXTA] based regimen and there is significant adenopathy or an enlarged spleen, we may reassess the size of lymph nodes and spleen during the course of Venetoclax [VENCLEXTA] ramp-up to determine if patients can be transitioned from inpatient to outpatient ramp-up.

Mary Leer: 

Dr. Khan, this is our final question. Karen asks, with many new therapies available, will watch and wait be redefined for CLL patients? 

Dr. Nadia Khan: 

What an excellent question, Karen. Currently, the strategy for CLL patients is to institute therapy when there is likely to be a benefit with the intervention, and there are studies that are ongoing looking at earlier intervention with oral therapy, and once we see the readout for patients with particularly high-risk features. I think it is possible that we’ll have an alternative strategy for those patients. Thankfully, our CLL patients live very long lives, and what we’ve come to see over decades of treatment experience with our CLL patients is that early intervention to date has not resulted in longer… Longer survival. So at this point, it’s not something that’s recommended, but we may have more information soon.

Mary Leer: 

Dr. Khan, thanks for joining us today and answering all of these questions for our audience. Just a reminder to our audience, please take the CLL-Patient-Expert Q&A survey following this webinar.

Mary Leer: 

Dr. Khan, before we end this program,  what are you optimistic about for the future of CLL? 

Dr. Nadia Khan: 

So I’m very optimistic about the future of CLL therapeutics, we’ve already come to see excellent responses that are very durable with time-limited targeted therapy and immunotherapy approaches. In the future, it is likely that we will be using a more personalized approach to treating any given CLL patient using their genetic and molecular profile to decide on their treatment strategy, a single-agent approach versus multiple targeted therapies to eradicate CLL clones. In the future will be looking at endpoints like minimal residual disease, as well as clonal evolution to help guide our treatment strategy for patients with CLL

Which Tests Do You Need Before Deciding on a CLL Treatment Path?

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Which Tests Do You Need Before Deciding on a CLL Treatment Path? from Patient Empowerment Network on Vimeo.

Why do you need biomarker testing before deciding on a treatment plan for your CLL? Learn which key tests should occur before treatment begins and how the results may impact your care decisions.

See More From INSIST! CLL

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What CLL Tests Are Essential and How Do Results Impact Treatment and Prognosis?

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What is High-Risk CLL and How Is It Treated?

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What Factors Impact CLL Treatment Options?
 

Transcript:

Why do you need biomarker testing before deciding on a treatment plan for chronic lymphocytic leukemia—also known as CLL?

The results may predict how your CLL will behave and could indicate that one type of treatment may be more effective than another.

Biomarker testing—also referred to as risk stratification, genetic, or molecular testing—identifies specific gene mutations, proteins, chromosomal abnormalities and/or other molecular changes that are unique to YOUR CLL. 

These changes are only in the CLL cells and do not affect all the cells in your body.  These are not genetic changes that you inherit or pass on to your children.

Several tests that may help to guide these decisions, include:

  • The FISH test identifies chromosome abnormalities, including high-risk markers like the 17p deletion.
  • Next is testing for IGHV mutational status, which determines whether IGHV is mutated in a patient. Mutated IGHV indicates lower-risk CLL.
  • Then there is the TP53 mutation status test, which looks for mutations in the TP53 gene.

So why do these tests results matter?

One reason they matter is because patients with certain biomarkers may respond better to one treatment approach over another. 

  • For example, patients who are IGHV mutated have a special benefit from chemoimmunotherapy with FCR and could consider this approach. Patients who are IGHV unmutated should not consider FCR.
  • Additionally, patients with deletion 17p or TP53 mutations should never take chemoimmunotherapy, as it results in only a very short-term benefit.

When are these tests administered?

IGHV status typically doesn’t change over time and only needs testing at diagnosis or before your initial treatment.

FISH and TP53 should be repeated before beginning every treatment regimen, as these results may change over the course of the disease.

How can you make sure you have had essential biomarker testing?

  • First, always speak up and ask questions. Remember, you have a voice in YOUR CLL care. Your doctor is expecting you to ask questions and should be able to answer them.
  • Ask your doctor if you have had or will receive biomarker testing—including FISH, IGHV, and TP53–and how the results may impact your care and treatment plan. Be sure to ask for paper or electronic copies of your important test results.
  • And finally, bring a friend or a loved one to your appointments to help you process information and to take notes.

To learn more about your CLL and access tools for self-advocacy, visit powerfulpatients.org/CLL.

Chronic Lymphocytic Leukemia: Shirley’s Clinical Trial Profile

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Chronic Lymphocytic Leukemia: Shirley’s Clinical Trial Profile from Patient Empowerment Network on Vimeo. 

Chronic lymphocytic leukemia (CLL) patient Shirley felt she had a different experience not fitting the typical CLL patient demographic. Watch as she shares about her journey as a BIPOC patient, the value of clinical trials, and her advice to other patients for ensuring optimal outcomes.

See More from Patient-to-Patient Diverse CLL Clinical Trial Profiles

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Transcript:

Shirley:

In my late 30s, I started feeling extremely fatigued, and I went to my GYN. She ran a couple of tests, and she has sent me over to a hematologist because she just determined that it was something that she was not knowledgeable about. Then I had a physician contact me after several blood tests, and they had told me that it was a form of cancer, and it was leukemia, and it was called CLL, which is chronic lymphocytic leukemia.

When I heard the word chronic, I immediately thought, “Oh my God, this means like death instantly.” But they had told me that, “No, it was aggressive, but it’s definitely slow-moving,” and I have a great chance of fighting it. I was concerned because I did not feel like I wanted to be a lab rat, because I was told that I did not fit the demographics for having CLL. Most of the individuals were male of Caucasian descent, and they were much, much older than I was possibly in the late 60 to 70s, so I got a lot of stares and it made me feel very uncomfortable. So, I just didn’t want to feel like they were just like, “Okay, this is a different case. We can make a name for.” I wanted to make sure I was getting the best treatment.

I didn’t tell too many people in the beginning because I really didn’t know what was going on, but a lot of people was able to tell because no matter how much the time of sleep I got…I was always tired. The fatigue is just overwhelming. I decided to just remain optimistic about my future, because I know whenever you’re trying to battle any kind of ailment your attitude means a lot, you have to really put it out there into existence that you’re going to get better and you believe it, you have to really believe it in order to put that energy into finding out about the treatments and so forth. My doctors, they gave me a booklet that was maybe about it, and they said to me, “Take this home, study hematology and learn about your disease, how we’re going to be trying to treat it, and you know what you’re going to be feeling and you need to tell us everything if your nose itches, your eyes burn. We need to know everything that happens.”

And I was just not a complaining type of person, so there were plenty of times where I was experiencing like pain on my side and I was just like, “Oh, it’s probably just gas from the medication,” and then later found out that the medication they were giving me was enlarging my spleen, so it was pushing against my stomach, which was causing me an enormous amount of discomfort. So the doctors had to then give me other types of medication to help treat that issue that I was having, so it was definitely a long journey. This was an unusual diagnosis for someone of my heritage. The doctors explained to me that there was no blueprint for my treatment, this was, they were going to be trying things, they had a team of individuals, maybe it was like 10 or 15 of them, and they’re actually studying my case on this big screen in this room.

So it was constant medication, it was constant them trying, running the blood test, you were always, always getting blood tests, they were always giving you observations. Someone was always in your room, at least every two hours, checking to see what was going on. I just remember some time sitting in the hospital was just feeling very overwhelmed and definitely feeling isolated alone. I remember one time I was in so much pain, like my bones were hurting me so bad that I literally was just losing my mind in the bed. So they gave me some morphine, which I’ve never taken before in my life, and I wind up throwing up the chemo medication that they gave me. it was just so bad. So, the nurses and I were really overwhelmed at that point. I remember contacting family members and telling them, “I need to get out of here, I feel like they’re just trying whatever they want to try on me, and I don’t think it’s working. I don’t feel this is the place for me, like I need to really get out of here.”

So my doctor who was actually giving a seminar in Switzerland was just like…he was really amazing. He said to me, he said, “You are my prize patient. I am working every day really hard trying to get you back to being your 100 percent yourself,” He said, “You’re always like a light of sunshine.” The women that he worked with are always looking in the patient portal, and they’re like, “Shirley is coming in,” like, “Oh my gosh, she’s coming today.” And they’re excited because I always maintained a great attitude, and I always came in there dressed up.

So my doctor also recommended it when my treatment, a hospital stay was over for me to practice on taking out walks and exercising, yoga was very good meditation, they told me to get all these apps on my phone and therapeutic massages, those have been like a savior for me. I think having a good support system around you is extremely important, people who understand. Never be afraid to tell people what exactly you are experiencing. The mental fatigue that you go through is really unpredictable, and it’s off because that was not something that they, that no one prepared you for. So my doctor and his colleagues, they were just one of the greatest teams that I have experienced, them being very transparent about what was going on with me, even when I was at one time being very stubborn, I got so upset that I pulled the IV out of my arm and I was like, “You know what, I’m not doing this, I’m tired. I’ve got to get out of this hospital. I can’t stay here.”

I mean, people were just so sick, and this is not me. And they had to assure me, “It is you. You are sick, and you do have a blood cancer, and the sooner you come to terms with that, the more calm you’re going to be in being susceptible to accepting treatment. We’re here to help you, but we need you to tell us if something is not working, you don’t feel good on what’s going on in your body, we need to know.” The blood tests don’t lie, they tell them exactly what’s happening, the doctors know if the treatment is working, they monitor the CLL extremely closely. They were way more advanced at honing in on the type of treatment that I needed, so I was really assured that you’re in the right hands, and after when I started feeling a little bit better, then my trust totally opened up in staff, because I saw that they were excited about my treatment working. They were giving me the three combinations of chemo, and they were like, “This combination is working for you now.”

They started a new trial which was bringing in venetoclax (Venclexta) along with the rituximab (Rituxan), and that is what really started sending me on a better path, getting better. And then once I came off of the rituximab, which was an IV-infused chemo treatment, they decided to just keep me on the pill form of venetoclax, I was able to go into the office, which I was ecstatic about.

Advice I like to give to patients who are considering a clinical trial is definitely ask a lot of questions. Don’t be afraid, don’t be shy or hesitant and don’t feel like you feel like you’re ignorant. And always address it with a positive attitude. Keep in mind that they are there for your best interests and trying to get your health back to normalcy. Just know that you’re not in it alone. And always find someone that you can always have a conversation with if you don’t feel comfortable. Never be afraid to ask questions and just even if you do look different as opposed to everyone else that… and just get that everyone else that is sick. Don’t feel like you’re in it alone, regardless of how you look for what your demographic background is, just know that the team that’s there that’s in place is always fighting for you, and you can always say no or get a second opinion. That’s very important to know that you have options.

So, never feel afraid to ask about the clinical trials and do your research, it’s important. It’s inspiring to see people on the leukemia organization website that are exercising, they go for runs right after they receive treatment, that inspired me to say, I’m going to out and take the dog out for a walk or go out for a run and help myself get better,” and it works. It works, it really does.

Chronic Lymphocytic Leukemia: Fran’s Clinical Trial Profile

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Chronic Lymphocytic Leukemia: Fran’s Clinical Trial Profile from Patient Empowerment Network on Vimeo.

Chronic lymphocytic leukemia (CLL) patient Fran was diagnosed over 20 years ago and has traveled long distances for care. Watch as she shares her CLL journey and the benefits that she’s experienced from seeking out CLL specialists and clinical trials.

“I just think that clinical trials play such an important role in the future…we’ve come such a distance in my 20 years that we would have never come had we not had people that came before me in clinical trials.”

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Transcript:

Fran:

Hi, my name is Fran, and I am 80 years young, just celebrated my birthday. And I have had CLL for 22 years. So, I developed CLL while I was still working as a nurse and as a diabetic specialist within a hospital setting. I was diagnosed as many are, by a simple blood test, having no symptoms. It was really done as part of my military requirement.

And I continued to work and continue my military career. I was a single parent, I am/was a single parent at that time, and I was raising three girls, so I had a busy life, and this was just a sideline as far as my health was concerned. I was in good health, but as the years went on, after two-and-a-half years, my count started to rise again, no symptoms. And the local oncologist that I was seeing decided that it was time for me to begin my first treatment, which was a very simple treatment again, as far as I was concerned, because it was an oral medication that I had no side effects whatsoever from, and it was easy to take once a day, and I did get some improvement in my blood work, of course. It did not put me in remission, but it brought down my numbers a little bit, and I was able to go sort of morally along for another two years when then it became evident again, not because of how I felt, but because of my numbers that I needed additional treatment. This treatment was a little bit more complicated because it was FCR, and that’s chemotherapy intravenous.

But I did say myself, “You need to start paying more attention to this disease,” and I went…I did go for a consultation at a university, about two hours from my home, and the physician was pretty direct with me and saying, “You need to start to pay more attention, get more information, have more testing done regarding the type of CLL you have,” at that point, it was the first time I had heard mutated, unmutated, which I know sounds probably a little crazy with my medical background. But again, I was able to put it in the rear-view mirror, the disease because I felt so well, and/or maybe it was denial.

I was able to come out of retirement and start to teach nursing part-time and work some other jobs. I got married. Life was good, I mean it was even better than good, and my pattern has been that I would get the treatment, get my CLL under control for about three to three-and-a-half years, that was about the time that I started, the numbers started to increase. And so my local oncologist here in Maryland said, “Well, we really need to be looking for something different,” and it was at that time when iguratimod (IGU) had just come out of clinical trials and been approved, so I was in this area, at least one of the first people in their practice to go on iguratimod.

Even though it’s not comfortable geographically, but to begin to look for a specialist and…so three years into iguratimod, I did that. I went to a university hospital setting, about three hours from my home and had way more thorough work-up, but more a work-up that included more tests that were able to give a clearer picture of my CLL, where it was at that point. And this group of doctors at this university setting said, Well, you were on track to maybe another year, and iguratimod to the end of the line as far as treatment for you, and you probably need to be looking at perhaps venetoclax (Venclexta) as your next option.

And I discussed actually with one of the local oncologists about going to see a specialist, and he encouraged me, he did not discourage me, he said, “We’d like to continue, we can play a role here, but we understand where you’re coming from.”

I am so glad that I made the decision, I did, because there is no doubt that this decision at the end of the iguratimod journey for me. I was going to be faced with another crossroads of where do I go from here as far as treatment, and I am quite sure had I not made the decision to go to a research university setting with a specialist that really is heavy into research.

I’m not sure that I would have…I would have ended up on a clinical trial, I’m not sure…I could have navigated all that myself, even with my medical background. Sure, enough the iguratimod did come to an end. And as I did, I was truly, really ready for venetoclax and a physician specialist, CLL specialist that had been at the university setting that I went to, as I mentioned, for my care, he had left that university and moved on a little further away from where I live, I contacted him just for an opinion, and he said, “Well, why don’t you come to see me?” I was in Florida at the time, and so I said, “Okay,” I would. And I did. And he broached the clinical trial.

The benefits definitely outweigh the risks for me. I didn’t realize that I was one of the first 10 or 12 people to take this drug, but I don’t think it would have made any difference because I knew that I had faith, first of all, in my physician and his knowledge, I had faith in the drug as they explained it to me, it was a new way of addressing mutations, and I just felt that this was a good pathway to be on, and that the risks, I felt would be handled by my physician and I would be watching for them, so…I do feel in my case, it was definitely worth the risk. I would say though, that people should really think and read and get as much information as they can about the specific trial that they’re considering, but know that there are just some questions, especially early on, that can’t be answered because they don’t know the answers.

I believe wholeheartedly in trials, and I would say that you have to deal with the, I think the emotion and the fear, the trepidation, this is something new, and try to work through that and concentrate on the positive. I just think that clinical trials play just such an important role in the future that you know of all of medicine, but particularly CLL we’ve come such a distance in my 20 years that we would have never come had we not had people that came before me, in clinical trials. On the other hand, I think you really do need to think about not only the immediacy, but the intermediate and the long range. What do I do if this happens or that happens? That I have to think of this.

This is part of my life now. This is something I have to commit to.

So it’s given me years with my family, with my girls, with my grandchildren, I’m getting to see kids off to college, into high school, Bob and I, my husband have had years that I never thought that I would have.

Why Should CLL Patients Speak Up About Treatment Side Effects?

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Why Should CLL Patients Speak Up About Treatment Side Effects? from Patient Empowerment Network on Vimeo. 

How can chronic lymphocytic leukemia (CLL) patients benefit from speaking up about their treatment side effects? Dr. Lindsey Roeker explains how these important discussions can impact a patient’s quality of life.

Dr. Lyndsey Roeker is a hematologic oncologist at Memorial Sloan Kettering Cancer Center. Learn more about Dr. Roeker here.

Download Guide

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Transcript:

Katherine:                  

Why is it important for patients to speak up if they’re experiencing side effects? I know that they sometimes feel like they’re bothering their healthcare team.

Dr. Roeker:                 

Thank you for that question, because it’s really important point. Side effects are easiest to manage when you catch them early. So, when people have, for instance, muscle pain or joint aches, I have lots of tricks up my sleeve to help people, but I need to know about it. So, if people don’t tell me until they have joint pain that’s so bad that they’re not able to exercise or not able to get out of bed easily in the morning, that’s taking it – it’s gone on for a while at that point, and it’s pretty far down the line.

First of all, you wouldn’t have had to suffer for that long because we have ways of fixing it, and second, it’s always harder to fix a problem once it’s further down the line than earlier on. So, I talk to people about what side effects they might experience and what to expect, and then we talk about different management strategies to really nip it early so that we’re not dealing with a really huge problem down the line.

What CLL Tests Are Essential and How Do Results Impact Treatment and Prognosis?

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What CLL Tests Are Essential and How Do Results Impact Treatment and Prognosis? from Patient Empowerment Network on Vimeo. 

Which chronic lymphocytic leukemia (CLL) tests are essential for patients? Dr. Lyndsey Roeker shares details about vital tests for CLL and the influence of results on treatment and prognosis.

Dr. Lyndsey Roeker is a hematologic oncologist at Memorial Sloan Kettering Cancer Center. Learn more about Dr. Roeker here.

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Transcript:

Katherine:                  

What tests are necessary to help understand a patient-specific disease, both at diagnosis and prior to treatment?

Dr. Roeker:                

So, at diagnosis flow cytometry is the first test done, and what that means is, you take all of your white blood cells in your blood, and you run them through a fancy machine that puts them into buckets. So, you have a bucket of your normal neutrophils, a bucket of your normal lymphocytes, and then you find this bucket of cells that look somewhat unusual. And those have a specific look, if you will, and if they look like CLL cells, that’s how we make the diagnosis.

As you start reading, you’ll find that people talk about monoclonal B-cell lymphocytosis, which is MVL, CLL, and SLL, and a lot of times, it’s confusing because you start reading, and there are all of these – kind of lingo around it. So, what we’re looking for with flow cytometry is how many cells are in the peripheral blood? If it’s fewer than 5,000 per microliter – so, your doctor will talk to you; they’ll either say five or 5,000, depending on what units they’re using.

If it’s lower than that, and you don’t have any lumps or bumps or lymphadenopathy, meaning enlarged lymph nodes, that’s when we make the diagnosis of monoclonal B-cell lymphocytosis.

So, that’s kind of a pre-cancer diagnosis. Then, CLL, the diagnosis, is made in any patient who has greater than 5,000 cells per microliter, or five, if you’re using that unit, and that’s when the diagnosis of CLL is made. If people have lymph nodes that are enlarged, and there are CLL or SLL cells inside of them, but not a lot of involvement in the blood, that’s when we make the diagnosis of SLL, which is small lymphocytic lymphoma. So, CLL and SLL are really the same disease; it’s just where they manifest, primarily. So, whether it’s mostly in the blood, that’s CLL, or mostly in the lymph nodes, and that’s SLL.

Dr. Roeker:                 

So, that’s the flow cytometry test, and that’s kind of the test that leads to the diagnosis.

Katherine:                  

What about FISH and TP53 mutation?

Dr. Roeker:                 

So, at diagnosis, I often do this testing. Depending on which provider you go to, you may do it at diagnosis or closer to the time of needing treatment. But FISH is basically a test that looks for big changes in the chromosomes. So, if you remember back to high school biology and you see all of those chromosomes laid out, what FISH is looking for is big changes in those chromosomes. So, is there an entire arm of one of the chromosomes missing? And that’s what FISH does.

There’s also something called karyotyping, or in some institutions, they use something called SNP array. These are more refined tests that look for additional changes in the DNA. So, FISH is kind of a targeted look at a few different chromosomes, whereas karyotype or SNP array looks at all of the chromosomes. Then, there is TP53 mutational testing, and that is done through a bunch of different testing, often next-generation sequencing is what we use.

And we basically use a fancy spellcheck to see if there are any misspellings, if you will, in TP53.

And TP53 is a gene that we use. It’s called the guardian of the genome. So, its job is basically to make sure that our cells are reproducing. They keep all the genes in working order. If TP53 is missing or misspelled, it doesn’t work as well, and that’s when people can get more issues with their CLL. It tends to be CLL that behaves a little more aggressively.

Katherine:                  

What about IGHV mutation status?

Dr. Roeker:                 

So, IGHV mutation status is a really important feature because it really is, of all of the things, what helps us understand the best way to go about therapy. And IGHV mutational status is basically a signature of the CLL that helps you understand how mature or immature the CLL cells are.

In general, mature cells tend to behave a little bit more predictively, and in ways that behave a bit better with therapy. So, the more mature cells are actually mutated IGHV, and I know that’s backward, because usually we think of mutated as being back. But in this case, mutated is actually those cells that are a bit more mature, and that just has to do with how white blood cells develop in our body. If it’s IGHV-unmutated, those tend to be the more immature cells that can behave a little more erratically.

Katherine:                  

Which tests need to be repeated over time?

Dr. Roeker:                 

So, IGHV mutational status never changes, so that one does not need to be repeated. TP53 mutational status, FISH, and karyotype or SNP array, are ones that I tend to repeat before we start any therapy. So, at the time that you’re going to start your frontline therapy, and then if you have the disease come back and need to be treated again, I usually repeat those tests because those can change over time.

So, that’s both FISH, karyotype or SNP array, and the TP53 mutational testing.

Katherine:                   

So, it sounds like it’s important for patients to make sure they’ve had this testing. What do the test results reveal about a patient’s prognosis?

Dr. Roeker:                 

So, IGHV mutational status, like I said, really helps us understand how to approach therapy. In general, CLL is a disease that we are increasingly managing with targeted medicines, so drugs that really manipulate the cell biology to either stop the growth of cells or kill the cells so that they pop open. And that has been a trend that has taken place over the last six or seven years, and definitely has revolutionized the treatment of CLL. There is still a small minority of patients, the patients who have IGHV-mutated disease, and are younger, and have fewer other medical problems, that can still be good candidates for chemotherapy.

And the reason that I say that is because in general, chemotherapy for those young, mutated patients cures a subset of patients, so when we look at long-term studies of FCR, which is a combination of chemo and immunotherapy, there are a subset of patients who have a really long period where their disease doesn’t come back, to the point that we call them cured or functionally cured. That’s obviously a word that has a lot of emotional charge around it, and it’s hard because there’s always the possibility of the disease coming back in the future.

But because of those long-term outcomes, we know that there are some patients that can really have long-term benefit from chemoimmunotherapy.

For IGHV-unmutated patients, and especially for patients with TP53 mutations or deletion of 17p, chemoimmunotherapy really is not the right answer, with all of the medications that we have available to us now.

What Are Common Symptoms of CLL?

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What Are Common Symptoms of CLL? from Patient Empowerment Network on Vimeo.

What are common signs and symptoms of chronic lymphocytic leukemia (CLL)? Dr. Lindsey Roeker reviews how CLL is typically diagnosed and symptoms that patients may experience.

Dr. Lindsey Roeker is a hematologic oncologist at Memorial Sloan Kettering Cancer Center. Learn more about Dr. Roeker here.

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Transcript:

Katherine:                  

How is CLL diagnosed?

Dr. Roeker:                 

So, for most patients, CLL is diagnosed after a routine blood test shows a high white blood cell count. That’s kind of the most common way that we find people entering into our clinic. Other things that people can notice is they have lumps or bumps that they’ve felt in their neck or under their armpits. Those are some other symptoms that can lead to the diagnosis, but often once a patient finds that their white blood cell count is high, some additional testing is done, and the diagnosis of CLL is made.

Katherine:                  

What are some common symptoms of CLL? You mentioned the lumps and bumps.

Dr. Roeker:                 

So, often in early stages, the lumps and bumps in the neck are the most common that people recognize, but fevers or chills, night sweats, where patients are waking up drenched, having to change their pajamas, or weight loss without trying, are some other symptoms that can raise some alarm bells and make people start looking for something.

And CLL can be a diagnosis that can be found through that, as well.

Practical Advice for Coping with a CLL Diagnosis: What’s Next?

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Practical Advice for Coping with a CLL Diagnosis: What’s Next? from Patient Empowerment Network on Vimeo.

After receiving a diagnosis of chronic lymphocytic leukemia (CLL), patients can have a variety of concerns. Physician assistant Danielle Roberts shares her top three pieces of practical advice for patients to move forward. 

Danielle Roberts is a physician assistant with the Bone Marrow Stem Cell Transplant (BMT) team at Winship Cancer Institute at Emory University. Learn more here.

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Transcript:

Danielle Roberts:       

My recommendations if I could have three things that I would recommend all patients with CLL do, 1.) It would be to have your financial information kind of in line or know how to find that. Unfortunately, a lot of the medications that we use to treat disease are incredibly expensive. However, there are really good patient assistance programs out there. In order to be able to apply for patient assistance programs you do have to submit your financial information to them. So, I would really suggest that you have access or be able to know where to find that.

I would also really recommend you talk to your family members in so that they understand what’s – where you are with your treatment and what’s going on. As a physician’s assistant, one of the questions I generally get is when they bring in a family member or somebody who has not been along in their journey for their treatment, if they’re asking lots of questions, that was and kind of diagnosis. So, I encourage people to talk about that at the beginning, so everybody understands where they are and what the plan for the future is going to be.

And then the last thing that I always recommend to everybody is to understand that not one treatment is right for everybody. Understand that things are going to change and we’re all going to grow and we’re going to learn with the process. But if you don’t tell your healthcare team what’s going on, we can’t help you. And we say that there is no such thing as a bad question to us. You’re never bothering us. That’s what we’re here for. Rather you tell us, even if it may be something you feel is minor, ahead of time so that we can address it and work towards a solution, if there needs to be one.