Tag Archive for: fever

Questions to Ask Your Doctor About CAR T-Cell Therapy

Questions to Ask Your Doctor About CAR T-Cell Therapy from Patient Empowerment Network on Vimeo.

What should you know when considering CAR T-cell therapy for myeloma? This animated explainer video provides an overview of key questions to ask your healthcare team and advice for patients and care partners when considering CAR T-cell therapy.

See More from Evolve Myeloma

Related Resources:

Considering CAR T-Cell Therapy for Myeloma_ Key Questions to Ask Your Doctor

Accessing Myeloma CAR T-Cell Therapy Clinical Trials

Accessing Myeloma CAR T-Cell Therapy Clinical Trials

Transcript:

While receiving a myeloma diagnosis and choosing a therapy can be overwhelming, advancements in research are providing more options and more hope for patients than ever.  

And these advancements include CAR T-cell therapy a treatment in which a patient’s T cells, a type of immune system cell, are laboratory-altered to attack cancer cells in the body.  

If you are curious about this option, consider asking your healthcare team these key questions: 

  • Am I a candidate? 

CAR T-cell therapy patients must meet specific criteria. 

  • What are the risks? Common side effects of this type of therapy are cytokine release syndrome (CRS), neurotoxicity, suppressed immune system, and low blood counts. 
  • Is the timing right for me? The current approval is for patients who are later in their myeloma journey. 
  • Are there alternatives? Ask about other treatment options that may be appropriate for your myeloma. 
  • Is there a clinical trial that may be right for me? There are many myeloma treatments available in clinical trials, there may even be CAR T-cell therapy options. 
  • What is the cost? Every person’s insurance situation is different so it’s important to understand what the financial impact will be. 
  • What is the center’s experience with CAR T-cell therapy? Your healthcare team should be well-versed in this type of treatment. 

Beyond asking these questions, it’s also critical to research the therapy on your own –– ask your doctor where to find reliable information about the options you are considering.   

You should also discuss the pros and cons of each treatment option with your healthcare team, inquiring about potential side effects, and understand how the treatment is administered and the frequency of appointments. 

And it’s always a good idea to review your treatment choices with a care partner, such as a friend or loved one – someone you trust. 

Finally, always speak up and ask questions. Remember, you have a voice in YOUR myeloma care. 

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

Why Are CAR T-Cell Therapy Care Partners So Important to a Patient’s Recovery?

Why Are CAR T-Cell Therapy Care Partners So Critical for a Patient’s Recovery? from Patient Empowerment Network on Vimeo.

What role do CAR T-cell therapy care partners play in patient recovery? Expert Sarah Meissner shares her perspective on the role of a care and discusses potential side effects to look out for after the therapy. Care partner Adrienne talks about the side effects her husband experienced, and how they were managed.

Sarah Meissner, RN, BSN, BMTCN, is a Blood and Marrow Transplant and Related Donor Search Coordinator at the Colorado Blood Cancer Institute. Adrienne is a Care Partner to her husband, who underwent CAR T-cell therapy.

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

Related Resources:

CAR T-Cell Therapy Care Partners: What Questions Should You Ask the Healthcare

CAR T-Cell Therapy Care Partners: What Questions Should Your Ask the Healthcare Team?

How Can a Social Worker Help CAR T-Cell Therapy Care Partners

How Can a Social Worker Help CAR T-Cell Therapy Care Partners?

A CAR T-Cell Therapy Care Partner Shares Her Story

A CAR T-Cell Therapy Care Partner Shares Her Story

Transcript:

Katherine:

What is the care partner’s role in helping the patient through this process? And why are care partners so critical for a patient’s recovery?  

Sarah Meissner:

So, the care partner is a huge part of this process. After the cells are infused, there is a 30-day close monitoring period. And it’s a requirement for our center that the patient have a 24/7 caregiver during that time. There are a lot of side effects that can happen, and the patient is not going to be able to drive for two months. 

So, they need somebody with them at all times to be monitoring for these symptoms as well as bringing them to their appointments, helping them with their medications, day-to-day stuff at home as well. 

Katherine:

Adrienne, if you don’t mind, what sort of side effects did your husband have? 

Adrienne:

No, I don’t mind. He had from the immunosuppressing chemotherapy, he had really low numbers for a while and that just made him feel pretty bad. And he didn’t have any really bad side effects where we had to go to the hospital. Well, I guess we did a few times. He had just a little bit of fever, which you have to report and make sure that it’s okay.  

So, we did have to go twice. But it really didn’t end up being anything too bad. He did have a fall down the stairs at our house. So, if we did it different, I think because we had to be there every day for two weeks and the monitoring, I think that we would probably have rented a hotel that didn’t have these stairs just because he’s used to going up and down the stairs, but I don’t know if he just lost his footing. But it was extremely scary with everything else that he was going through. And that might have been part of the cognitive thing. I feel like most of his side effects, actually, started hitting months after the cognitive things. 

But the stress was more on just caring for him and making sure that he was okay and just being ready just in case something happened. 

Katherine:

Yeah. It’s like being on high alert 24/7. 

Adrienne:

Correct.  

Katherine:

Sarah, could you describe some of the common side effects? 

Sarah Meissner:

Yeah. So, there are two main sets of side effects that we’re looking for with CAR T therapy. The first is something called cytokine release syndrome. So, this happens when the CAR T cells latch onto those cancer cells and kill them and stuff gets put out into the patient’s blood stream. That can cause what’s called a cytokine response. And it’s, basically, proteins that cause inflammation. So, common side effects that we see with that are fever, low blood pressure, high heart rate. 

Some people need some oxygen. It looks very similar to what we would see in sepsis or a severe infection. The good news about that is there is a medication that’s very effective in treating cytokine release syndrome. And so, that’s why it’s important for the caregiver to notice these things and bring them into the hospital so they can get that treatment right away. The other set of side effects is something called neurotoxicity. So, if you think of the brain as a group of wires that is sending signals throughout the body, with neurotoxicity, those wires can kind of get jumbled. They’re not necessarily cut. This isn’t an irreversible thing. 

They get jumbled and can kind of mix up those signals. So, we can see patients that are confused. Patients can have seizures. We start everybody on anti-seizure medication as a prevention method. They can get a tremor and we can see changes in their handwriting. 

So, we assess for this twice a day during those first 14 days by asking them a simple set of five questions. To name certain objects, to count back from 100 by 10, ask them what day it is, that kind of stuff and then, to write out a sentence. And we can see subtle changes in that functioning in the handwriting. So, this like the cytokine release syndrome, if we start to see it, there are medications that we can use to treat it. We usually put people in the hospital for a little closer monitoring. But these are things that the caregiver usually will catch onto before the care team because they know them best.  

And they can catch onto those subtle changes maybe in their personality or little confusion or stuff like that.  

Katherine:

Well, that leads me to the next question, which is what sorts of questions should care partners be asking their team?  

Sarah Meissner:

Yeah, definitely.  

So, they should be asking what they should be looking for, what side effects would constitute something that they need to report. They should be asking, “Who are we reporting to, what phone number or who are we reporting these things to?” Those are the main things to be looking for. We use a home monitoring system at our center. So, maybe some specific questions about monitoring dependent on your center and how they’re having the caregiver look for these side effects.  

Adrienne:

But back to the cytokine syndrome, my husband did have this effect where he had the high fever, and that’s why we went in. And we did get the Toci dose [tocilizumab], which is a special medicine that kind of calms the inflammation down. So, I think that some of the questions that I would have pretty much are what to expect but I was given that. And I think maybe it would be good to meet other people that had gone through this before you’re actually going through it.  

I didn’t have that luxury, because my husband was only the second person in our hospital to do it. But to know what’s going on from another caregiver’s perspective would be nice. 

How Is Renal Medullary Carcinoma Diagnosed?

How Is Renal Medullary Carcinoma Diagnosed? from Patient Empowerment Network on Vimeo.

Renal medullary carcinoma (RMC) diagnosis involves testing that patients may need to follow up on. Expert Dr. Nizar Tannir explains common RMC symptoms, typical imaging tests that are involved, and advice to patients to be proactive to ensure their best care. 

Dr. Nizar Tannir is a Professor in the Department of Genitourinary Medical Oncology, Division of Cancer Medicine at The University of Texas MD Anderson Cancer Center.

[ACT]IVATION TIP

“…follow up after they have that imaging study…I would like patients to be aware and to be informed of what the symptoms mean. And that warning that blood in the urine or pain needs to be followed up and should not be dismissed or assumed that this is an infection or a stone that passed and you’re young, you don’t have to worry about cancer. They need to really follow up if that facility, that physician did not order the test, they need to follow up with their personal family physician and obtain those tests.“

Download Guide  |  Descargar Guía

See More from [ACT]IVATED RMC

Related Resources:

What Is Renal Medullary Carcinoma?
What Are the Symptoms of Renal Medullary Carcinoma?
What Are the Challenges of Diagnosing Renal Medullary Carcinoma?

What Are the Challenges of Diagnosing Renal Medullary Carcinoma?


Transcript:

Cora:

Given how rare RMC is, we know many people have a long road to diagnosis, like my brother Herman, which can cause tremendous stress. How is renal medullary carcinoma diagnosed?

Dr. Tannir:  

Renal medullary carcinoma is diagnosed by imaging. Symptoms typically include pain, blood in the urine, and, of course, if the cancer has spread to organs, cough, fever, weight loss…so the diagnosis is made by imaging first. And typically this is done at a facility, hospital, clinic or emergency room, with an ultrasound or a CAT scan or an MRI, which typically shows a mass in one of the kidneys. Renal medullary carcinoma arises more commonly in the right kidney than the left kidney and three-quarters of the time it arises in the right kidney. So, but it can arise in the left kidney. So once there is a mass in the kidney, that obviously needs to lead to a biopsy.

And ultimately the diagnosis of RMC is made by obtaining a piece of that tumor, whether it’s from the mass in one of the two kidneys or a biopsy of a site that the cancer has spread to. So my activation tip is for a patient who has these symptoms and they seek medical advice at a hospital or a clinic or emergency room, is to follow up after they have that imaging study. Occasionally the facility may report the findings on the CAT scan, let’s say, but patients may not get that report; and, unfortunately, this may not be followed later with a phone call to the patient or family to alert them about the findings. So they need to…

Patients need to be proactive and participate in their care by getting the report, by finding out, by following up what showed up on the CAT scan or ultrasound or MRI, and then follow up further with a facility that is specialist in this type of disease.  So my activation tip is be involved, be engaged, be proactive, follow up after you had a test. And if you..if the patient goes to a facility and they just get dismissed without doing the test, because unfortunately I’ve seen it in my practice time and again, where a patient goes to a facility complaining of blood in the urine or pain, and they’re treated with antibiotics and they’re told that they have an infection and the patient doesn’t follow up and they haven’t done an imaging study, a CAT scan or an MRI or ultrasound.

So I think it is important, I would like patients to be aware and to be informed of what the symptoms mean. And that warning that blood in the urine or pain needs to be followed up and should not be dismissed or assumed that this is an infection or a stone that passed and you’re young, you don’t have to worry about cancer. They need to really follow up if that facility, that physician did not order the test, they need to follow up with their personal family physician and obtain those tests. So that’s really my activation tip for patients. 


Share Your Feedback

Create your own user feedback survey

What Are the Symptoms of Renal Medullary Carcinoma?

What Are the Symptoms of Renal Medullary Carcinoma? from Patient Empowerment Network on Vimeo.

What renal medullary carcinoma (RMC) symptoms do high-risk patients need to be aware of? Respected expert Dr. Nizar Tannir shares common symptoms that can signal RMC and advice for patients to help ensure they receive urgent care when needed.

Dr. Nizar Tannir is a Professor in the Department of Genitourinary Medical Oncology, Division of Cancer Medicine at The University of Texas MD Anderson Cancer Center.

[ACT]IVATION TIP

“…if an individual who has sickle cell trait sees blood in the urine or they have flank pain, that those are warning signs, they need to seek medical attention, they need to contact their physician or go to a local emergency room or healthcare facility, and be checked. They can start with having an ultrasound or a CAT scan to really evaluate the kidneys, to look at the kidneys.”

Download Guide  |  Descargar Guía

See More from [ACT]IVATED RMC

Related Resources:

What Is Renal Medullary Carcinoma?
How Is Renal Medullary Carcinoma Diagnosed
What Are the Challenges of Diagnosing Renal Medullary Carcinoma?

What Are the Challenges of Diagnosing Renal Medullary Carcinoma?


Transcript:

Cora:

For those who may be considered high-risk, what are the symptoms of renal medullary carcinoma?

Dr. Tannir:

RMC, is the most aggressive type of kidney cancer so as any kidney cancer, the symptoms relate to the tumor in the kidney, so there will be blood in the urine, that’s one symptom another symptom is pain, flank pain or abdominal pain, belly pain, those are the symptoms related to the, these are local symptoms related the finding of the tumor in the kidney, but if there is a spread of the cancer and RMC, the reason it is one of the most aggressive cancers any person can get, and the most aggressive kidney cancer type is because of its propensity to spread to organs, and, of course, if there is a spread of the cancer or RMC to organs, there will be symptoms related to the spread of the cancer to these organs, for example, if they cancer spread to the lungs, the patient or the subject, we have cough or shortness of breath, or chest pain, if it spreads to bone they have bone pain, they may have weight loss and fever, and these are called constitutional symptoms.

So fatigue, so these are symptoms related to advanced cancer as it is with any advanced cancer, but specific local symptoms related to RMC would be flank pain and or blood in the urine. These should be warning signs. So my activation tip is if an individual who has sickle cell trait sees blood in the urine or they have flank pain, that those are warning signs, they need to seek medical attention, they need to contact their physician or go to a local emergency room or healthcare facility, and be checked. They can start with having an ultrasound or a CAT scan to really evaluate the kidneys, to look at the kidneys. So this is an important activation tip for individuals who see, who experience or encounter any of those symptoms I just mentioned.


Share Your Feedback

Create your own user feedback survey

30-Year Acute Myeloid Leukemia Survivor Shares His Journey

30-Year Acute Myeloid Leukemia Survivor Shares His Journey from Patient Empowerment Network on Vimeo.

What might acute myeloid leukemia (AML) patients experience for symptoms, treatment, and coping with AML? AML patient and Empowerment Lead Art Flatau shares the experience of his AML journey from diagnosis, through treatment and AML survival, and advancements in AML treatments.

Art also shares his empowerment advice for patients and care partners to ensure optimal care and how he has found a sense of purpose in patient advocacy efforts.

See More from [ACT]IVATED AML

Related Resources:

Empowered AML Patient: Ask the AML Expert

Empowered AML Patient: Ask the AML Expert 

How an AML Survivor’s Resilience Saved Her Life

How an AML Survivor’s Resilience Saved Her Life 

Advice for Acute Myeloid Leukemia Patients Seeking a Clinical Trial

Advice for Acute Myeloid Leukemia Patients Seeking a Clinical Trial 


Transcript:

My name is Art, and I live in Austin, Texas. In 1992, I was 31 and married with two young children. I was in graduate school and working full-time. For a couple weeks, I had been feeling tired and had been running a low-grade fever. I also had a lot of bruises, probably because I was playing rugby at the time. I thought the fatigue was because I was overworked and getting  too little sleep.

On Saturday, I had a rugby game but was too tired to play more than a few minutes. The next day, I was too tired to do much. My wife and I decided that I would go to the doctor on Monday. 

Monday morning, I woke, and there was blood on my pillow as my gums were bleeding. My wife wanted to take me to the ER, but I convinced her to just call our doctor. I went to the doctor later that morning. She noted my symptoms, did a quick exam, and sent me for blood work. After lunch, she called and said I needed to go to the hospital and see a hematologist. I knew I was in trouble.

We talked to the doctor and he said, “We have to see what kind of leukemia you have.” What a shock.  I knew that I was sick with something I had not had before. The fact that it was cancer was a shock. I didn’t know that there were different types of leukemia but soon found out that I had acute myeloid leukemia (AML).

That evening, I received platelets and red blood transfusions. The next morning, I had a bone marrow biopsy, more platelets, and surgery to put in a central line. That afternoon, less than 24 hours after hearing the word leukemia in reference to me, I started chemotherapy. This was all overwhelming. We had no way to understand what our options were or to get a second opinion.

Three-and-a-half weeks later, I got out of the hospital with no hair, 25 pounds lighter, a lot weaker but alive. I had more chemotherapy in the next few weeks and more hospitalizations. A few months later, I was finished with chemo. I regained some strength, regrew my hair, and tried to get my life back to normal.

In early 1993, about 9 months after being diagnosed, we got another shock, I had relapsed. I needed to have a bone marrow transplant. Although we had a little time, a few days to figure out where to go for a transplant, we were again struggling to understand the process. We were also struggling to figure out how to move to Dallas for three more months for the transplant. The transplant was a long grind, a month or so in the hospital, a couple of months of going to the outpatient clinic two to three times a week, but we made it through. 

Now, 30 years later, I’m still around. My children graduated from high school, college, and graduate school and have successful careers. My wife and I are empty-nesters.  I am still working but hoping to retire in a few years. Although I consider myself very lucky to have survived and have had relatively few side effects, I do have some side effects to deal with, including low testosterone.

Some things that I’ve learned during my AML journey include: 

  • AML is a rare disease: The good news is that over the last several years a lot of new treatments have been discovered for AML. These new treatments are leading to more people surviving AML. However, these new treatments are evolving rapidly. It is important to find a cancer center and doctors who treat a lot of patients with leukemia. 
  • Consider volunteering: Advocacy work is an excellent way to help yourself and to support other patients and continued research efforts.
  • If something doesn’t feel right with your health, advocate for yourself and ask for further testing.

These actions (for me) are key to staying on my path to empowerment.

Share Your Feedback About [ACT]IVATED AML

What Is CAR T-Cell Therapy for Myeloma?

What Is CAR T-Cell Therapy for Myeloma? from Patient Empowerment Network on Vimeo.

How does CAR T-cell therapy work to treat myeloma? This animated video provides an overview of the CAR T-cell process, explains which patient this treatment could be appropriate for, and reviews potential side effects.

See More From Innovative Myeloma Therapies

Related Programs:

What Is Myeloma 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?

What Are the Risks of CAR T-Cell Therapy?


Transcript:

CAR T-cell therapy is a type of treatment in which a patient’s own immune system cells, also known as T cells, are reprogrammed in a laboratory to attack cancer cells.  

The process involves removing T cells from the patient’s blood. Then, the T cells are sent to a laboratory where a gene for a special receptor that binds to a protein on the patient’s cancer cells is added to the T cells. The special receptor is called a chimeric antigen receptor.  

When this process is complete, the cells are put back into the patient’s body by infusion. The altered T cells then attack and destroy cancer cells in the patient’s body. 

In myeloma patients, the FDA-approved CAR T-cell therapies recognize a protein called B.C.M.A. on the surface of myeloma cells. 

Now that you know how CAR T-cell therapy works, who is CAR T-cell therapy right for? 

  • While still a new treatment, CAR T-cell therapy is currently approved for people with relapsed or refractory multiple myeloma who have already received four or more lines of therapy. 

While every patient reacts differently to CAR T-cell therapy, some of the potential side effects may include: 

  •  Cytokine Release Syndrome, which occurs when the immune system responds to infection or immunotherapy drugs more aggressively than it should. Symptoms may include fever, nausea, fatigue, and body aches.
  • Another potential side effect is neurotoxicity, which may cause negative effects on the nervous system such as confusion, difficulty speaking or understanding, loss of balance or consciousness, tremors and seizures. 
  • And blood count recovery can be slower following CAR T-cell therapy.   

So, what should you ask your doctor about CAR T-cell therapy? 

  • Is CAR T-cell therapy available at this cancer center? 
  • Is CAR T-cell therapy an option for me now or in the future? 
  • What is the cost of this therapy? 
  • What are the risks and benefits of this approach? 
  • What can I expect during the recovery process? 

To learn more about innovative myeloma therapies and to access tools to help you become a pro-active patient, visit powerfulpatients.org.  

How Can You Thrive With an MPN? Advice for Navigating Care.

How Can You Thrive With an MPN? Advice for Navigating Care. from Patient Empowerment Network on Vimeo.

How can you thrive with an MPN? In this animated explainer video, an MPN specialist and myelofibrosis patient discuss how to make informed decisions about your care and live a full life with an MPN.

 

Related Programs:

Thriving With an MPN | Tips for Managing Worry and Anxiety

Thriving With an MPN | Tips for Managing Worry and Anxiety

Finding an MPN Treatment Approach That Is Right for You

Finding an MPN Treatment Approach That Is Right For You

How Can Patients Navigate Care and Thrive With an MPN?

How Can Patients Navigate Care and Thrive with an MPN?


Transcript:

Brian: 

Hi, I’m Brian. Nice to meet you! Many years ago, I was diagnosed with a condition called myelofibrosis. At first, it was a scary to learn that I had cancer, but once I found the right treatment option for me, I’ve been living a full life.  

Meet, Dr. Liu – my doctor. 

Dr. Liu: 

Hi! I’m Dr. Liu, and I’m a hematologist specializing in the care of people with myeloproliferative neoplasms or MPNs.   

MPNs are a group of blood cancers that are characterized by the bone marrow overproducing a certain type of cell. The three types of MPNs are essential thrombocythemia, or ET,  polycythemia vera or PV, and myelofibrosis, or MF. 

As Brian mentioned, with the right treatment, it is possible to live a full life and to thrive with an MPN. 

Brian: 

It’s so true. Navigating my care has been much easier because I partner with my healthcare team – participating in decisions makes me feel like an important member of the team. 

Dr. Liu: 

That’s right, Brian. When considering treatment, it’s important to weigh all of your options.  

While your healthcare team is the expert when it comes to the clinical side of your disease, you as the patient, are the expert on how treatment will impact YOU and your lifestyle.  

Brian: 

And as someone who knows my needs well, my wife is another key member of my team.  She comes with me to appointments and takes notes during visits, and when it is time to make decisions about my care, we both feel well-informed about the options. 

So, Dr. Liu – what factors should be considered when choosing an MPN treatment?  

Dr. Liu: 

Well, it’s important to note that everyone’s MPN is different so what may work for one person, may not work for another. In general, we consider certain factors,1 such as: 

  • The type of MPN, whether it is ET, PV, or MF. 
  • The patient’s age and overall health. 
  • Test results, including blood work or any genetic testing that has taken place. 
  • The symptom burden, which basically means how much the disease symptoms are interfering with a patient’s quality of life. 
  • Any pre-existing health issues. 
  • Finally, and most importantly, the patient’s preference.  

Brian: 

And I like to make informed decisions. So, when considering therapy, I also did some research on my own, and then discussed the information with my healthcare team. It helped my wife and me understand what we’d learned, and confirmed our decision. 

Dr. Liu, what sort of questions should patients ask their doctor when considering a treatment plan? 

Dr. Liu: 

Great question. When choosing therapy, patients should ask: 

  • How is the treatment administered, and how often will I need treatment? 
  • What are the potential side effects of the treatment? 
  • How will the effectiveness of the treatment be monitored? 
  • And, what are options if this treatment doesn’t work for me? 

Brian: 

That’s great advice. Once you’ve begun treatment, it’s important to continue to share how you are feeling with your healthcare team – be sure to mention any side effects or symptoms you may be having with your team. 

Dr. Liu: 

That’s right, Brian. If you speak up about what’s bothering you, we can usually find a way to manage the issue. 

It’s also important point to tell your doctor if you’ve missed a dose of your medication. Many of the newer MPN therapies are self-administered, and it’s important to let us know so we can adjust the plan if necessary. 

So, what steps should you take to thrive in your life with an MPN? 

Brian: 

  • First, understand and participate in treatment decisions. Be sure to share your personal preferences. 
  • Then, communicate regularly with your healthcare team – don’t wait to share information only when you have an appointment.  
  • And, utilize your whole team – nurses, nurse practitioners, and others, are all there to help you. 
  • Use your patient portal. You can view lab work and test results, or even use the messaging feature to communicate with your team. 
  • Bring a friend or loved one to appointments and always write down any questions or concerns in advance.  

Dr. Liu: 

And, most importantly, remember you are at the center of your care. Advocate for yourself! 

To learn more, visit powerfulpatients.org/MPN to access a library of tools. Thanks for joining us! 

What Are Common MPN Symptoms?

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

Dr. Jeanne Palmer, an MPN specialist, reviews the most common symptoms associated with essential thrombocythemia (ET), polycythemia vera (PV), and myelofibrosis (MF).

Dr. Jeanne Palmer is a hematologist specializing in myeloproliferative neoplasms (MPNs) and bone marrow transplant at the Mayo Clinic in Arizona. Dr. Palmer also serves as Director of the Blood and Marrow Transplant Program and is Vice Chair and Section Chief for Hematology. Learn more about Dr. Palmer, here.

 

Related Programs:

 
How to Treat PV-Related Itching

How to Treat PV-Related Itching

How Can Patients Navigate Care and Thrive With an MPN?

How Can Patients Navigate Care and Thrive With an MPN?

Thriving with an MPN What You Should Know About Care and Treatment

Thriving with an MPN | What You Should Know About Care and Treatment


Transcript:

Katherine Banwell:

Would you walk us through the common symptoms of each of the MPNs? Let’s start with essential thrombocythemia. 

Dr. Jeanne Palmer:

Right. So, there are a number of shared symptoms throughout all the diseases and when we start to figure out how to categorize them, they call into several different categories. The first one is inflammation-related symptoms. We know that the inherent pathway that’s dysregulated or that causes these diseases to happen can also result in significant inflammation in a person, that can result in things like fevers, night sweats, weight loss, and overall feeling really fatigued and poorly, which is something that it seems to be much more prevalent in patients with MPNs, all sorts of them, actually. 

The next set of symptoms is related to microvasculature, so all the little blood vessels. And sometimes we think, oh, maybe that’s because there’s too many red blood cells or platelets and the blood become viscous. It’s probably more related to the actual dysregulation of that JAK2 pathway, which is inherent to all the myeloproliferative diseases and as a result, the little blood vessels can clamp down and that can give people headaches, visual changes, numbness and tingling in the hands and feet, and even can cause sort of a painful rash called erythromelalgia in the body. 

So, these are things that can happen that are probably less appreciated side effects of the disease. And finally, there’s spleen-related symptoms. The spleen is in the left upper quadrant of the abdomen and it’s an organ that generally is about 12 centimeters in length, 10 to 12, but in patients with myeloproliferative diseases it can be enlarged. And as a result of an enlarged spleen people can have feeling like they get fuller early. So, if you’re eating a meal, all of the sudden you can only eat half of that meal versus the whole meal. 

Discomfort or pain in the left upper quadrant. Sometimes it’s much more noticeable when you like bend over to tie your shoes. And then sometimes people can actually, when the spleen gets really big, the blood flow can be impaired towards the end of it which can cause some of the spleen tissue to die, and that can be painful. So, these are things that if somebody does start to notice that they’re having fullness in the left upper quadrant, pain, stuff like that, that that may be related to spleen symptoms.  

Katherine Banwell:

What about PV or polycythemia vera, what are the symptoms? 

Dr. Jeanne Palmer:

So, all of these sorts of relate to all of the myeloproliferative diseases. So, one other one that I didn’t mention, and this is actually more in PV than others, is itching. Itching can be absolutely unbearable when somebody has PV. It’s particularly noticeable after taking a shower. So, a lot of times I’ve met patients who are like I haven’t been able to take a shower in years, because it causes such a high degree of itching. 

Katherine Banwell:

Why a shower? Is it different from having a bath?  

Dr. Jeanne Palmer:

Water on the body that can cause the problem. So, if people take hot showers, it’s even worse. Although I think that people sort of react to it differently. Usually what patients end up doing is more like sponge bath type of things, rather than actually being exposed to the water. 

 Taking colder showers or cooler showers can sometimes help mitigate that. But the itching, and even in the absence of a shower, people can have pretty severe itching, and that can also be one of the major side effects. 

What Are the Risks of CAR T-Cell Therapy?

What Are the Risks of CAR T-Cell Therapy?  from Patient Empowerment Network on Vimeo.

Dr. Melissa Alsina, a myeloma expert from Moffitt Cancer Center, reviews the potential side effects of CAR T-cell therapy for myeloma patients, and discusses how these side effects may be managed.

Dr. Melissa Alsina is an associate professor of medicine in the Blood and Marrow Transplant Program at Moffitt Cancer Center in Tampa, Florida where she also serves as head of the Multiple Myeloma Transplant Program. Learn more about Dr. Alsina, here.

See More from Innovative Myeloma Therapies

Related Resources:

Myeloma Research | CAR-T Cell & Bispecifics Study Updates

Myeloma Research | CAR-T Cell & Bispecifics Study Updates

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

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

What Are Common Myeloma Treatment Side Effects?

Transcript:

Katherine:

What are the risks of CAR T-cell therapy? 

Dr. Alsina:

So, in myeloma, it is, in general, pretty safe. There are two main – well, actually, I would say three main side effects that we can see with CAR-T. Number one is called cytokine release syndrome, and we are getting these cells from the patient’s immune systems, sending them a lab to be manufactured so that they can recognize this protein, BCMA, in the myeloma cells. 

And then, those cells are grown, so essentially, what we’re doing is that we’re taking the immune system of the patient, and we’re making it very specific against the myeloma cell. And then we’re growing it, so we’re making a hyperactive immune system, and then giving it back to the patient. And then, those cells, they are going to go ahead and react against the myeloma cells and start killing the myeloma cells, and in doing that, that reaction, that immune reaction will elicit release of a lot of proteins – cytokines – and that can cause side effects. 

When that happens, that is called cytokine release syndrome, and the most common finding with that is a fever. Patients can have a high fever. And then, it varies depending on the CAR-T that the patients are getting. So, for example, with this Abecma, usually, the reaction happens right away after you get the cells – the next day, so that’s why these patients, we admit them to the hospital because we know that this cytokine release syndrome is going to happen right away.  

And, it could be just a fever. In the majority of the patients, it happens like this, is just a fever, but it may be about 20 percent of the patients, that reaction can be more severe, and it could be a fever with low blood pressure or shortness of breath, and it could be a fatal complication, but that’s very, very rare.  

And we know – we can identify, obviously, when it’s happening, and there’s a medication that we can give to actually sort of counteract that reaction and don’t let it progress, and in the majority of the patients, that works quite well.  

Katherine:

What other side effects are there for CAR T-cell therapy? 

Dr. Alsina:

Yeah, so besides the main one that I discussed, cytokine release syndrome, the other thing that could happen is neurotoxicity, meaning that T cells can actually cross to the brain and cause toxicity in the brain, and depending on the type of CAR-T that the patient is getting, it could be less or more risk.  

But essentially, what could happen is that the patient could have some aphasia, like for example, difficulty finding words. It could also be just a headache. Patients could have seizures, so we do give the patients medication to prevent seizures while they are undergoing CAR-T. 

They can have difficulty writing, so we make every patient write a sentence every day to make sure that’s not being affected. And we do a mini mental status every day. Every day, we’ll go see the patient and ask them 10 different questions, like “Where are you? What day is it? Who’s the president?”, we show them an object, and so on so we can monitor these things very closely. If we see any changes, then we can intervene. Usually, for neurotoxicity, we give steroids. 

The good news, though, is that this is very rare. With Abecma, it’s very rare that a patient would have severe neurotoxicity. With ciltacabtagene autoleucel (Carvykti), which is the one that was approved more recently, from 100 patients that were treated, there were five patients that had this delayed neurotoxicity, some of them with movement disorders, like Parkinson’s-like systems, and these were delayed. These didn’t happen in the first few weeks. 

But we learned what are the risks associated with these, the majority of the patients that have very high tumor burden, so what we do is that we monitor the patients very closely, especially the patients with high tumor burden. The ideal situation is that we can control the disease a little bit better before taking them to CAR-T, but even when that’s not possible, what we do is that we intervene early on if we see that these patients are getting any side effects and being more aggressive with the intervention. 

And then, the third, more important side effect is these CAR-T cells can prevent blood counts to recover. For CAR-T, we give chemotherapy.  

That would allow the T cells to expand, and this chemotherapy can drop the blood counts, but usually, they recover quickly, but in some patients, this recovery doesn’t happen quickly, and patients can have low counts for months, and obviously, that would bring increased risk of infection. 

So, that is a potential complication, especially in patients that have received a lot of prior therapies, and it’s not common that a patient would take a long time, but it could happen, and sometimes, occasionally, we’ve had to give these patients a stem cell boost from stem cells that we have stored to actually make their counts recover. So, those are essentially the three most common complications, but in general, it’s a treatment that is well tolerated and very manageable, and I can tell you the majority of the patients that I’ve treated, they’ve said this is easier than a transplant.  

Immunotherapy: Which Myeloma Patients Is It Right For?

Immunotherapy: Which Myeloma Patients Is It Right For? from Patient Empowerment Network on Vimeo.

Dr. Krina Patel, a myeloma specialist and researcher, explains how newer therapies, such as CAR T-cell therapy, are being used in myeloma and which patients these treatments are most appropriate for.

Dr. Krina Patel is an Associate Professor in the Department of Lymphoma/Myeloma at The University of Texas MD Anderson Cancer Center in Houston, Texas. Dr. Patel is involved in research and cares for patients with multiple myeloma. Learn more about Dr. Patel, here.

Related Resources:

How Does Immunotherapy Treat Myeloma?

What Are the Side Effects of Myeloma Immunotherapy?

Myeloma Treatment & Research Updates From 2022 ASCO and EHA Meetings

Transcript:

Katherine:   

Now, in reference to immunotherapy and CAR T-cell therapy, who are these types of treatments right for?

Dr. Patel:    

So, I think it’s really exciting that we finally are getting standard of care therapies for all these new immune therapies. So, our first CAR T for myeloma got approved a little over a year ago. Our second CAR T got approved just a couple of months ago, and we’re hoping our first bispecific will be approved in just a couple months.

Our fingers crossed. On the clinical trials, I will say our patients who had a good performance status, meaning they’re able to do everything else normally life-wise, those are the patients that got onto those clinical trials; and the reason is safety-wise.

So, T cells when we use them to kill myeloma, they release cytokines or enzymes, you can say, that are inside the T cells and that’s what they use to communicate with other immune cells to come help them kill.

Those are the same cytokines that make people feel really ill when they have the flu, for instance. So, as our immune system tries to fight infections when people get fevers, they feel chills, they feel just fatigued and tired, it’s those same kind of cytokines that, even when you try to kill the myeloma with T cells, people can get that same type of symptoms.

And really, the main, fevers and things like that, we can take care of. But when patients’ blood pressure drops or if their oxygen levels drop really low, that’s where we can run into some trouble. Now, the good news is, in myeloma, most of these new therapies don’t cause really bad CRS [Cytokine Release Syndrome] or really bad neurotoxicity that we can sometimes see. And so, thankfully most patients are okay, but really it’s making sure that none of our patients have bad toxicity. So, most of our myeloma patients, I will say, are eligible for these therapies. However, if someone has really bad heart disease or really bad lung disease, those are patients that maybe these are not the right therapies for.

Essential Testing Following a DLBCL Diagnosis

Essential Testing Following a DLBCL Diagnosis from Patient Empowerment Network on Vimeo.

Following a diffuse large B-cell lymphoma (DLBCL) diagnosis, essential testing should follow. Expert Dr. Loretta Nastoupil explains DLBCL tests that help determine prognosis and guide treatment options for each patient.

Dr. Loretta Nastoupil is Director of the Lymphoma Outcomes Database in the Department of Lymphoma/Myeloma at The University of Texas MD Anderson Cancer Center. Learn more about Dr. Nastoupil, here.

See More From The Pro-Active DLBCL Patient Toolkit


Related Programs:

Key Steps Following a DLBCL Diagnosis

What Is Diffuse Large B-cell Lymphoma (DLBCL)?

Expert Advice for Newly Diagnosed DLBCL Patients

Expert Advice for Newly Diagnosed DLBCL Patients


Transcript:

Katherine:

Let’s look into testing for a moment. What tests are essential when making a diagnosis?

Dr. Nastoupil:

So, at the beginning, we clearly have to have tissue. I always say, “Tissue is the issue.” So, we may have features that are suggestive of lymphoma. And even sometimes radiologists will describe a CT scan or an X-ray and say, “This looks very suspicious for lymphoma.” But unless we actually have a biopsy that confirms lymphoma, we won’t go as far as to render a diagnosis in the absence of a biopsy.

Now our biopsy approaches have evolved over the last few years. The gold standard or what I would consider to be the best approach currently is to actually have an incisional biopsy meaning we find a lymph node that looks suspicious.

And we either remove the entire lymph node or a large section of that lymph node to render a diagnosis because there are various things we need to do to that lymph node.

So, generally, we do what’s called immunohistochemistry staining. So, we stain either surface markers of those cells or markers within the cell because cancer is defined as having an abnormal clone or a population of cells that all have the same features. And they’re able to survive even if the host is not thriving.

So, that’s, essentially, what we’re trying to define. Are there cells in this lymph node that are all the same? And what features do they share in common? And then we will also do something called flow cytometry where we’ll take these cells and essentially sort them according to those surface markers. And that will also tell us – is this a B-cell clone, a T-cell clone, and what features would distinguish one lymphoma from another?

And the last thing that we need tissue for are what we call molecular studies, where we may learn about either genes that are rearranged or mutated within those cells that, again, may help us further classify the lymphoma and, again, group them into higher or potentially lower risk groups.

Katherine:

What do the results of these tests tell us about prognosis and treatment choices?

Dr. Nastoupil:

So, again, everything kind of hinges on what type of lymphoma we’re facing. So, for instance, diffuse large B-cell lymphoma is what we call an aggressive lymphoma. So, what does that mean? It can grow very quickly. It can take over the patient in terms of resources. So, generally, patients will have weight loss and sometimes even constitutional symptoms or B symptoms, such as night sweats and fevers, fatigue.

In the absence of treatment, it is universally fatal. Now, that timeline can vary from one person to another. But, generally, within a year, if we don’t treat large cell lymphoma, generally, that’s not survivable.

But as I’ve also mentioned for at least 60 percent of patients and potentially even more, we can cure it with standard treatment. There are other types of lymphoma, such as indolent B-cell lymphomas where actually the goal is not cure, but patients may actually have a normal life expectancy meaning they will face multiple treatment courses over their lifetime. But at the end of the day, they should live just as long as someone their same age and sex who doesn’t have lymphoma.

So, again, that’s going to be a vastly different treatment course and outcome. So, sometimes, when you’re sitting in the waiting room and you’re sharing your journey with others, you have to keep in mind that you may all be using the same term, Non Hodgkin lymphoma. But our expectations in terms of treatments and outcomes might be vastly different. 

NCCN Guidance on Safety and Effectiveness of COVID-19 Vaccines for Cancer Patients

NCCN Guidance on Safety and Effectiveness of COVID-19 Vaccines for Cancer Patients from Patient Empowerment Network on Vimeo.

Is the COVID-19 vaccine recommended for people living with cancer? Dr. Erin Roesch shares recommendations from the National Comprehensive Cancer Network (NCCN) for those undergoing cancer treatment, including guidance on mask wearing and advice for family members.

Dr. Erin Roesch is a breast medical oncologist at the Cleveland Clinic. Learn more about Dr. Roesch here.


Transcript:

Katherine: 

Many cancer patients have questions about the COVID vaccine. Is it safe? Do we need to continue wearing masks? Here to address these questions is cancer expert, Dr. Erin Roesch. Dr. Roesch, would you introduce yourself?

Dr. Roesch: 

Hello. And thank you for inviting me to participate in this very important conversation. My name is Erin Roesch. I am a breast medical oncologist at Cleveland Clinic.

Katherine: 

Excellent. Thank you so much for joining us today. I’d like to run through a list of concerns that cancer patients have about vaccines in general and the COVID vaccine specifically.

So, let’s start with a basic question. Should people get vaccinated if they have cancer?

Dr. Roesch: 

Yes. All individuals diagnosed with cancer should get the COVID-19 vaccine as recommended by the National Comprehensive Cancer Network or NCCN.

An immunocompromised state makes many people with cancer at higher risk of serious COVID-19 illness. Those who are vaccinated are less likely to become sick with COVID-19. And, also, vaccinated people who do get COVID-19 are much less likely to become seriously ill.

I would also mention that those living in the same household as a person diagnosed with cancer and caregivers or other close contacts should also get vaccinated.

Katherine: 

Another common question is whether people with cancer should wait for any reason to get the COVID-19 vaccine.

Dr. Roesch: 

Most people with cancer should get the vaccine as soon as they can with a few exceptions according to NCCN.

People in the process of receiving stem cell transplant or cellular therapy should wait at least three months after they finish treatment to get vaccinated.

Those diagnosed with certain forms of leukemia should also wait a few weeks after receiving treatment to allow their immune system to recover so the vaccine can be effective.

It’s not been clearly defined exactly how chemotherapy affects responses to COVID-19 vaccines. But some data suggests that immune responses may not be as robust. However, it is still recommended that those receiving chemotherapy and also immunotherapy and radiation should get vaccinated whenever they can.

Katherine:

I think a lot of people are concerned too about whether one vaccine is better than another. What would you say to them?

Dr. Roesch:

And that is a common question that I often get in my clinic. And I advise my patients to receive or take whatever vaccine they are offered.

We don’t really have any studies or data at this point suggesting one being better than another in cancer patients.

Katherine: 

Some people are wondering if the vaccine can give a person COVID-19. How would you address that?

Dr. Roesch: 

I would say that as none of the currently available vaccines are made with a live virus, the vaccine itself can’t give a person COVID-19. By getting vaccinated, actually, those who are immunocompromised are really helping society to prevent the spread of COVID-19. Immunocompromised people who get COVID-19 may be more likely to infect others due to prolonged shedding of the virus after infection.

Katherine:

What about side effects? Are the vaccine’s side effects worse for people with cancer?

Dr. Roesch:  

No. Side effects do not appear to be worse for those diagnosed with cancer. Results to date suggest that the vaccine’s side effects in people with and without cancer are really no different.

These side effects, as we have seen, may include arm soreness, rash, fatigue, chills, fever, headache, for example.

Katherine: 

And, finally, can cancer patients stop wearing a mask after they’ve been vaccinated?

Dr. Roesch:

Cancer patients should continue to wear a mask post-vaccination. Many people with cancer may have a harder time actually fighting infections and may not respond as well to vaccines. So, people diagnosed with cancer and their close contacts should get vaccinated and then continue to follow precautions, which include wearing masks, social distancing, hand hygiene.

Katherine:

Is there a certain length of time that people need to continue wearing a mask after being vaccinated?

Dr. Roesch:  

At this time, I would recommend patients continue to follow the CDC guidelines that are currently in place. And at this point, I don’t think we have a projected end time for that yet.

Katherine:    

Is there anything else you’d like to share with cancer patients who may be concerned about vaccinations?

Dr. Roesch:    

I would encourage those diagnosed with cancer to not only themselves get vaccinated but to also really voice and stress the importance of vaccination to those that surround them, including, again, members of their household, close contacts, and even beyond their inner circle.

I would also advise people to try and avoid letting the concern of possible side effects related to the shot deter them from getting it. The symptoms of COVID-19 can be much worse and potentially serious for some compared with the relatively minor side effects that we’ve seen with the vaccine itself.

I also would mention I’ve had personal patients that have expressed concern about functioning of their immune system while receiving chemotherapy and how this might affect their response to the vaccine. I do emphasize to them that even though responses might not be as strong as they may be in the absence of active treatment, I feel like the potential benefits of the vaccine still outweigh the risks in my mind.

Katherine:   

Thanks so much for joining us today, Dr. Roesch.

Dr. Roesch:

Thank you for having me.

How to Make an Informed MPN Treatment Decision

How to Make an Informed MPN Treatment Decision from Patient Empowerment Network on Vimeo.

When faced with several options, how can you decide on the best therapy for your essential thrombocythemia (ET), polycythemia vera (PV), or myelofibrosis (MF)? In this explainer video, Katrina and her doctor walk through important considerations when choosing treatment and provide advice for partnering with your healthcare team.

See More from Engage

Related Programs:

What’s YOUR Role in Making Myelofibrosis Treatment Decisions?

Primary vs. Secondary Myelofibrosis: What’s the Difference?

COVID-19 Vaccination: What Do Myelofibrosis Patients Need to Know?


Transcript:

Katrina:

Hi, I’m Katrina. Nice to meet you!

Several years ago, I started having headaches and felt very tired. After a trip to the doctor and undergoing bloodwork, I was diagnosed with polycythemia vera, or PV, which is a rare blood cancer that causes my body to produce too many blood cells. It was overwhelming at the time to learn that I had a blood cancer, but my hematologist, Dr. Liu, told me more about the condition and how it’s managed.

Here’s Dr. Liu–she can explain it further.

Dr. Liu:

Hi! I’m Dr. Liu, and I’m a hematologist specializing in the care and treatment of people with myeloproliferative neoplasms or MPNs. MPNs are a group of blood cancers that are characterized by the bone marrow overproducing a certain type of cell. Katrina was diagnosed with PV, which is one of the three MPNs. The three types of MPNs are:

Essential thrombocythemia, or ET, which means that the body is producing too many platelets. The second is polycythemia vera or PV. PV is characterized by the overproduction of red blood cells, and, in some cases, elevated white blood cells and platelets. And the third is myelofibrosis or MF, which causes scarring in the bone marrow that disrupts the normal production of blood cells.

When a patient is diagnosed with any of these conditions, there is a chance they could progress from one condition to the next.

Those that have been diagnosed with ET, PV or MF, should have regular visits with their hematologist to monitor their condition and find the most appropriate treatment to manage their MPN.

Katrina:

After I was diagnosed, I met with Dr. Liu and she walked me through the goals of treatment for PV.

Dr. Liu:

Right! First, we talked about the clinical goals of treatment for PV, which are to reduce the risk of a blood clot and ease or eliminate any symptoms.

And, it’s important to note that because each of the MPNs is different, they are treated differently – be sure to discuss the specific goals of YOUR MPN with your doctor.

Katrina and I reviewed the effectiveness of each treatment option, including how treatment would be administered, and took all of her test results into consideration to make sure we found the best, most personalized treatment option for her PV. Then, we went over what our next steps would be if the treatment plan needed to be adjusted.

Katrina:

Next, we talked about another key treatment goal: symptom management. Dr. Liu let me know that I should make her aware of any symptoms that I may be having, even if I don’t think it’s related to my PV.

Dr. Liu:

Exactly, Katrina. A significant change in symptoms can indicate that it may be time to switch treatments or that the disease might be changing. Those symptoms may include enlarged spleen, fever, itching, fatigue and anemia, among others. This is why it’s always important to not only have blood counts checked regularly, but it’s essential to tell your doctor or nurse about any symptoms you may be having, even if you don’t think it’s related to your MPN.

And, last but not least, we discussed the most important treatment goal: Katrina’s goals. Katrina let me know that she’s very social and enjoys playing golf and tennis with her friends – we wanted to make sure she could continue doing the activities she loves.

Katrina:

Dr. Liu reviewed each of the treatment approaches with me, including potential side effects for every therapy and how it could impact my lifestyle. We discussed the pros and cons of each option, together.

Dr. Liu:

Exactly! When deciding on therapy, you and your doctor may also consider:

Your age and overall health, any presence or history of other medical problems, and the financial impact of a treatment plan.

Katrina:

In addition to asking questions, my daughter, Sarah, took notes during our appointments, since it was often hard for me to absorb everything at once.

We also made sure to talk about the appointment on our way home, while the information was fresh on our minds. And we did our part by researching PV and bringing a list of questions to each appointment.

Sarah found an office visit planner on the Patient Empowerment Network website that helped me organize my health info and questions.

Dr. Liu:

As you can see, Katrina and her daughter were actively engaged in each care decision. It’s vital that patients feel empowered to speak up. If you can, bring a friend or loved one along to your appointment.

And, if you are able, it’s a good idea to seek a second opinion or a consultation with an MPN specialist to help you feel confident in your care decisions.

Katrina:

Dr. Liu let me know that she would monitor my condition through regular physical exams, blood work and frequent communication. She made Sarah and I feel included in the decision-making process, as if it were a collaboration.

Dr. Liu:

That’s right. This is a partnership. So, what steps can you take to be more engaged in your MPN care?

  • Bring a friend or loved one to your appointments.
  • Understand and articulate the goals of your treatment plan.
  • Learn about your options and weigh the pros and cons of each approach.
  • Consider a second opinion or a consult with a specialist.

Katrina:

That’s great advice, Dr. Liu. To learn more, visit powerfulpatients.org/MPN to access a library of tools.

Thanks for joining us!

Why Should CLL Patients Speak Up About Treatment Side Effects?

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

See More From INSIST! CLL


Related Resources

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

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

the COVID-19 Vaccination Safe for CLL Patients in Treatment?

Is the COVID-19 Vaccination Safe for CLL Patients in Treatment?

What Factors Impact CLL Treatment Options?

What Factors Impact CLL Treatment Options?


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.

How Can I Tell if My CLL Treatment is Effective?

How Can I Tell if My CLL Treatment is Effective? from Patient Empowerment Network on Vimeo

How is chronic lymphocytic leukemia (CLL) treatment effectiveness monitored? Dr. Lindsey Roeker discusses the potential symptom improvements that can manifest and what she looks for during examinations with her patients.

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

Download Guide

See More From INSIST! CLL


Related Resources

 
Why Should CLL Patients Speak Up About Treatment Side Effects?

Why Should CLL Patients Speak Up About Treatment Side Effects?

the COVID-19 Vaccination Safe for CLL Patients in Treatment?

Is the COVID-19 Vaccination Safe for CLL Patients in Treatment?

What Factors Impact CLL Treatment Options?

What Factors Impact CLL Treatment Options?


Transcript:

Katherine:                  

How do you monitor whether a treatment is working?

Dr. Roeker:                 

So, a lot of it has to do with the CBC, so your normal blood count, and what we’re looking for is improvement in hemoglobin and improvement or normalization of platelet count. And for many people, those, either anemia or low platelets, are the symptoms that drive people to be treated in the first place, so we’re looking for those parameters to get better.

With a lot of people with CLL, totally understandably, because it’s the number that’s the most abnormal, really focused on white blood cell count. 100 percent understandable.

I always tell people that that’s actually the part of the CBC that I care least about, and the reason is that, for patients on BTK inhibitors, we expect to see the white blood count actually get higher before it gets less high. That’s actually just a sign that the drug is working and it’s pulling CLL cells from the lymph nodes into the bloodstream. So, that’s actually a good sign that it’s working, and that lymphocyte count, at least in the beginning, isn’t a great marker of how well the drug is working.

The other thing that’s important is the physical exam, so looking for whether any lymph nodes that were enlarged have normalized or gone away, and also feeling the sides of the spleen, because the spleen can become enlarged with CLL, and it’s important to make sure that’s normalizing, as well.

And then the last piece is talking to people, so making sure that if they were having fatigue, or fevers, or night sweats before they started treatment, to make sure that those symptoms have gone away. And that’s kind of the three things that I use. I use the blood counts, the physical exam, and the interview with a patient to really understand how their disease is responding.