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

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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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

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

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.”

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

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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?

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


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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?

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.

Download Guide

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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?

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.

Download Guide

See More From INSIST! CLL


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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?

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.

See More From The Pro-Active CLL Patient Toolkit


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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.

Living With CLL: Christina’s Diagnosis Story

Living With CLL: Christina’s Diagnosis Story from Patient Empowerment Network on Vimeo.

After chasing a diagnosis for almost a year, Christina Fisher shares how she was finally diagnosed and how she lives well with CLL.


Transcript:

Andrew Schorr:

Andrew Schorr with Patient Power here with Christina Fisher from near Portland, Oregon, diagnosed in 2013 in an odd way with a consultation with an ENT specialist who did a biopsy basically or an excision of your swollen lymph node, and then it turned out to be CLL.  Shocker, right?

 

Christina Fisher:

Yes.

 

Andrew Schorr:

Okay.  And so that had you go on a journey to different oncologists and ultimately CLL specialist, and so you’re doing well now with some of the latest medicines, in your case venetoclax, Venclexta, with Rituxan and delivered with Rituxan (?) high cell as kind of a quick infusion.  How are you doing?  Are you doing well?

 

Christina Fisher:

I’m doing well.  It’s been a little bit bumpy over the holidays for the last four months or so, but I’m emerging, feeling well.  Thank you.

 

Andrew Schorr:

Okay.  But it was also bumpy in getting to a diagnosis, getting to the right specialist, right? and knowledgeable team, so what is the lesson for people to be their own advocate?

 

Christina Fisher:

Be dogged in your determination.  Do not give up.  Be your own advocate.  Do your research.  Have your questions ready ahead of time.  Just don’t give up.  I had so many obstacles trying to arrive at a diagnosis, and the frustration was insurmountable, but I didn’t give up.  I knew something was wrong.

 

Andrew Schorr:

Being in your mid‑40s and having weird symptoms when CLL is often a disease of people older, your doctors were saying, oh, you’re fine.  I mean, the idea of leukemia never came up early on, right?

 

Christina Fisher:

My primary care physician was flip about it and had actually made several comments such as you are way too fit to have cancer, your blood isn’t displaying anything in particular, almost to the point where he made me feel like a hypochondriac.  But I had a large lymph node swollen over my collar bone that would not recede, and I went through a year of asking him for a biopsy, asking him for further tests, to the point of tears in frustration, and I received no answers.

 

Andrew Schorr:

And it was ENT specialist, a different doctor, who finally said, let’s take a look at that lymph node.  That’s what led to the pathology report, and that’s when‑‑you got a call a couple of days later.  Tell us about that.

 

Christina Fisher:

Well, initially my eyes had swelled shut.  I went to an ophthalmologist who was roommates with the ENT, and it turned out that their other roommate had removed my swollen gallbladder as well.  They started talking about me.  And so they sent me to the ENT, and she was extremely efficient and tuned in, and she saw the lymph node over my collar bone, and she had done other things that ENTs do during the exam but ultimately stated that something else is wrong with you.  Do you have a moment?  Let’s step into the surgery room and we’re going to extract a lymph node right now.

 

So that caught me off guard, but I was game.  And she removed a small lymph node from my neck and said it will be about a week to do the pathology, but, yes, called me in two days.

 

Andrew Schorr:

And said, what do you think you have?

 

Christina Fisher:

She said, what do you think you have?  And I‑‑she said, you know you’re sick.  What do you think you have?  And I said, I think I have leukemia or a form of it.  And she said, you’re right.  Would you like to sit down and talk about it?  So it was kind of hard to hang onto the phone at that moment, but I wanted to know what kind it was.

 

Andrew Schorr:

Now, Christina, you found your way to a CLL researcher.

 

Christina Fisher:

I did.

 

Andrew Schorr:

Specialist.  So what is your advice to people when we know there’s this whole changing world of treatments and combination therapies and clinical trials.  You’ve been in some clinical trials.  What would you say to patients about at least getting a consultation with a CLL specialist?

 

Christina Fisher:

You must.  You must seek out a consultation with a specialist.  It is up to you as a patient to seek one out and obtain that appointment.  No one is going to come to you and say, hey, maybe you should make an appointment or I’m going to give you a referral.  You need to make that appointment and see a specialist that you’re comfortable with.  And if your personality or maybe the information doesn’t quite deliver in a manner that you prefer, find another one.  There are many in the country now for CLL, and I was fortunate enough to be accepted into a program at OHSU where‑‑

 

Andrew Schorr:

Oregon Health & Science University.

 

Christina Fisher:

Yes.

 

Andrew Schorr:

Okay.  So you’ve gone from having your eyes swollen and shut and a big lymph node on the side of your neck, and at one point I think even being weak and being in a wheelchair to doing well.

 

Christina Fisher:

Yes.

 

Andrew Schorr:

So what’s your outlook for the future?

 

Christina Fisher:

Well, I feel like I’ve been released from a cage recently, and that’s something that I’m considering, and so my husband says he knows I’m doing better when I nag more, and, believe me, I’ve been nagging.  So I’m feeling so much better just recently, and I feel like that I have hope for life.  I have hope for a future.  I have hope that there’s just a chronic condition or a cure.  I feel fantastic right now, and so I’m looking forward to a very active summer, definitely.

 

Andrew Schorr:

Good for you.  Christina Fisher, wish you the best, continued better health, and I’m glad you have the right team working with you now, and thanks for speaking up and telling others to speak up.

 

Christina Fisher:

Thank you, Andrew.

 

Andrew Schorr:

Okay.  Andrew Schorr, and you can see personal advocacy and knowledge can be the best medicine of all.

A Clinical Trial as a Positive Experience

During the fifth session of Patient Cafe™, Mike talks about his initial diagnosis and his feelings during that time. Mike had no symptoms of his disease and was on watch and wait. He felt fine but was concerned that his healthcare plan did not give him access to a CLL specialist. He switched plans in order to get a second opinion and ended up seeing Dr. Rosen from City of Hope who helped him enroll in a clinical trial.

Mike had a very positive experience during the clinical trial. He had almost no side effects and responded well to the treatment. When asked what he would tell other patients who were perhaps a bit afraid of enrolling in a trial, Mike answered that it is very easy to be afraid if you read about all the horrible side effects that are possible. But if you talk to the medical team and ask them what is most likely to happen, they will give you a pretty good idea.

Watch the video and listen to Mike relay his experience:

A Clinical Trial as a Positive Experience from Patient Empowerment Network on Vimeo.