®. I’m Dr Nitin Jain, associate professor in the Department of Leukemia at MD Anderson Cancer Center in Houston. I would like to welcome one of my patients, Mrs. Samantha Rine, who is here with her husband, Doug, to share her journey with chronic lymphocytic leukemia [CLL]. Welcome, Samantha and Doug.

: Before we get started with Samantha’s story, I would like to briefly discuss CLL. CLL stands for chronic lymphocytic leukemia, which is a leukemia generally found in older adults in the United States. CLL is the most common leukemia we see in adults in the US, with approximately 20,000 new patients diagnosed each year. The average age of diagnosis is about 72 years. Therapy for this disease has changed remarkably in the last few years. Where we were previously using chemoimmunotherapy—chemotherapy with some antibody therapy—now we are largely using newer therapies, which are targeted therapies, nonchemotherapy approaches, for our patients. They are working fabulously for our patients, who are achieving remission and are doing well.

If you know someone or if you are diagnosed with CLL, an important aspect is to seek care at centers of excellence for chronic lymphocytic leukemia—there are many in the United States—so you’re able to get advice about how to manage it. With that background, let’s now turn back to Samantha. Samantha, I know you were diagnosed a little over a year ago, maybe one-and-a-half years ago. Tell us the story about what happened. What was the first sign you felt something was going on? What led to your visit?

Sure. There were no major signs. I was going about my day, my normal activities. My routine was I would get up, go work out, and then go to work. I was fine. I noticed the morning that it all happened that I had some bruising on my forearms. That was a little strange. Later, I learned that was some petechiae. I went to see my primary care physician and she ordered some blood tests. About an hour or two later she called me and said, “You need to go to the emergency room right now.” I said, “OK, but what do I tell them because I feel fine.” I honestly felt completely normal.

I went to the emergency room here in town and they performed some more blood tests. The doctor suspected leukemia, but they needed to do a bone marrow biopsy to confirm that. The hospital here in town couldn’t perform that procedure, so they wanted to send me somewhere else. We chose MD Anderson Cancer Center in Houston, and they sent me in an ambulance. You and I met, and we did the biopsy confirming that it was CLL. Throughout the whole process, in the back of my head I kept thinking that you all were wrong because I felt so good. I said, “There’s no way CLL could be my diagnosis.” But it was. In hindsight, there were a few little things that were probably warning signs or symptoms. My feet were a little swollen. I had some other strange markings on my feet and other places, but not enough to cause any concern to me. So, the diagnosis was a complete shock.

: You guys live a couple hours away from Houston, and she received treatment through us here. I think she was in the hospital for some time, maybe a week or 10 days, I believe.

: From your perspective as a caregiver, as her spouse, what was going through your mind during that time?

: As Samantha mentioned, it was out of the blue because we had no reason to suspect anything was wrong. Unfortunately, I was out of town in Atlanta for work and she called and told me that she had gone down to the doctor, had the blood work, and they asked her to come back to the emergency room. But at that point, I didn’t know why. I still had two more hours where I was going to be out of touch, no phone communication. I told her, “Listen, as soon as I can, I’ll call you and see what’s going on.”

Two hours later, I called her, and she told me she was being put in an ambulance and driven to MD Anderson Cancer Center. I went from thinking that she had some little routine something they wanted to check, to her being loaded into an ambulance and driven to a cancer center. I immediately ran to my hotel, grabbed all my things, jumped on a flight, and flew to Houston. Believe it or not, I beat her to the hospital. I was waiting when the ambulance pulled in. That was when I found out how serious and how concerning it was when she was admitted to the ICU [intensive care unit] and became one of your patients. You’re right, she was in the hospital for close to 10 days. The majority of that time she was in the ICU as you were going through the evaluations and determinations. It was a very shocking experience, one that hit both of us out of the blue; we were not prepared for it. It was quite a steep learning curve, both about CLL and also how to become a patient and caregiver, two things that we had not personally experienced with each other, just through family members.

The First Signs of Leukemia

Samantha came to the MD Anderson Cancer Center with an abnormal white blood cell count on day one. Most of the time for CLL [chronic lymphocytic leukemia], patients present in a way where they have no symptoms, but it’s less common to have patients come to the ICU [intensive care unit], to the hospital, on day one of their CLL diagnosis. I think that was an extreme aspect of your case, where you had no prior history of cancers, leukemia, or any issues, and on day one, your blood cell counts were significant.

The blood cell counts were so abnormal that initially the suspicion from the doctors back home was that this could be acute leukemia, a different kind of leukemia. That’s why you were urgently sent to us and placed in the ICU because at the time of you coming in the ambulance, we thought we were dealing with an acute leukemia. Once you came here and we did some blood tests, it was clear that this was not an acute leukemia, and we finally diagnosed you with CLL.

Most patients with CLL will present without any symptoms. They go to their primary care physician, they perform a blood test, and the doctor will say, “Your white blood cell count is 30,000 or 15,000 lymphocytes/mm3 of blood,” which is higher than normal. The normal range is up to 10,000 lymphocytes/mm3. That is a common scenario where then patients will be referred to a hematologist/oncologist. They will do some blood tests, and that will confirm the diagnosis of CLL. Other times there are patients who develop some lymph nodes, such as swelling in the neck or in the armpits. Then they go to the doctor, the doctor evaluates it further, and these turn out to be lymph nodes of CLL.

Many patients in the early part of the disease have minimal to no symptoms, which also happened in your case. The only difference in your scenario was that your white blood cell counts were quite abnormal at the time of diagnosis. The CLL was probably brewing in your body for some weeks to months. It didn’t happen overnight. Because it was not giving you many symptoms, you were able to carry on with your life up until the event that led to your diagnosis. In terms of the investigation, I know you came to the hospital, we were in the ICU. Beside the blood tests, were there bone marrow, CT [computed tomography] scans, or other tests? What do you recall happening at that time?

: We did a CT scan. The bone marrow and the CT scan were the biggest tests. You were checking the blood what seemed like every two hours.

: Early on when you came in, maybe in the evening, I don’t recall right now, our first suspicion was that this is something more worrisome, such as an acute leukemia. There was much more concern about that. By the next morning we had a somewhat clear indication, based on the blood tests, that this was not a case of acute leukemia, it is more like a chronic leukemia. It still needs to be treated, in your case right away, and that’s why we kept you in the ICU for a few days and then transitioned you up to the floor. That’s where we started to establish your diagnosis of CLL.

In terms of the diagnosis of CLL, typically we can diagnose patients on a blood test, and there’s a test called flow cytometry, which can be done in the blood and in the bone marrow. In Samantha’s case, we first checked the blood, but then we also performed a bone marrow test just to confirm. We were really worried about her blood cell counts, so we wanted to do a bone marrow test to have a more accurate assessment of her CLL. Many patients will also have CT scans done at the time of diagnosis to see how much lymph node tumor burden they have. Some of the lymph nodes we have in the neck, in our arm pits—the axilla—the doctors can feel on examination. But there are also lymph nodes we have inside our body, inside the chest, back of the chest, back of the abdomen. To assess them we need to do a CT scan, and that’s what we did for Samantha as well.

Many times for patients with CLL, as I said, the diagnosis can be established with the blood test. If a patient has early stage disease, and most of the patients in early stage disease don’t need to be treated, doing a bone marrow and a CT scan is not generally required. But in Samantha’s case, because there was a concern that we had to start treatment, her blood cell counts were abnormal, we ended up doing all those tests as well.

Chronic Lymphocytic Leukemia Diagnostic Process

When we diagnosed Samantha with chronic lymphocytic leukemia [CLL], and in general when a patient is diagnosed with CLL, the big question for us is whether you need treatment. Chronic lymphocytic leukemia, or CLL, is one of those diseases where on one hand, the doctor will tell you that you have a leukemia, you have a blood cancer, and in most cases the other thing they will tell you right away is, “We need to watch it; there’s no need for any treatment right now. We just need to observe it.” If you take 100 patients newly diagnosed with CLL, it could be several years, on average maybe five years or so, before they need treatment for their CLL. In early stages of the disease, patients generally have no symptoms; they feel well, their blood cell counts are well, they continue with their normal life. CLL doesn’t affect their quality of life in any fashion, and in that sense, most patients with CLL are generally observed when they are diagnosed.

But when they show some treatment indications, they need treatment. What are the treatment indications? Why would a doctor want to treat a patient with CLL? In my opinion, there are three broad categories. First is if someone has a low hemoglobin count—anemia—generally they will experience shortness of breath. Second is if a patient has low platelet count, they may experience bleeding issues, skin bruising, and things like that. Third is if a patient has big lymph nodes that are causing them to have symptoms, or if they have significant symptoms from their disease that affect their quality of life. If a patient with CLL meets those criteria, then we start treatment.

In Samantha’s case, it just so happens that when she presented on day one, her symptoms were minimal, but her blood cell counts were quite abnormal. They were abnormal to the point that we had to consider starting treatment immediately. When we talk about treatment for patients with CLL, the treatment has evolved quite a bit. Up until a few years ago, we were using chemotherapy-based treatment. I would say in the last five, six years, we’ve started using new drugs that have come along for patients with CLL. Some of them are now FDA-approved for use, such as ibrutinib, acalabrutinib, and venetoclax, which is typically combined with a monoclonal antibody if you are using it for patients with CLL.

Based on the risk profile of Samantha’s CLL, we decided to go with a venetoclax regimen for treatment, which is a pill you take every day, along with a monoclonal antibody treatment, which is generally given once a week for the first month, followed by once a month for about five months. The venetoclax itself is given for a total of one year. So, it’s a regimen that is now FDA approved and is typically given for a one-year duration.

There are some advantages and disadvantages of using this regimen compared to other available regimens, such as ibrutinib and acalabrutinib, where those drugs are supposed to be given forever. You take them as long as they are working for you. There are some other differences as well, which you should certainly discuss with your doctor, but these regimens, using ibrutinib, acalabrutinib, or venetoclax, are effective for a patient with CLL.

CLL Treatment Decision Factors

Tell us more about your schedule of treatment, since you live a couple of hours away. What kind of side effects were you experiencing? How did you tolerate it? How did it all go about?

It went great. What I remember in the hospital is you explained the different options for treatment. I believe you chose the regimen you did because the others had issues of bleeding. In my CT [computed tomography] scan they found a small blood clot, so I was put on a blood thinner. It was your opinion that venetoclax plus rituximab would be the best choice with those other conditions. As far as the treatment went, the first infusion was in the hospital.

I never had anything done like that before, so it was a little scary, but it went well. I had no side effects, no adverse reactions; I tolerated the treatment well. It didn’t change anything as far as how I was feeling. Then the good news was that going forward, because I tolerated the first infusion so well, I could get an injection of the rituximab. I was excited about that, and I took one or two, I think, and then had an allergic reaction, so I was put back on the infusion after that, which was fine. It takes a little time during the day, traveling back and forth. It’s not a huge issue. We’re not that far away.

As far as side effects, there were never any on the rituximab. With the venetoclax, we ramped up the dose. I started with a low dose, and then we increased it a little bit over time until it got to the point where my system could handle the full dose. However, at the end I couldn’t handle the full dose, so we lowered it a little. I was taking a reduced dose, but never had any side effects. I never felt bad or tired. Like Doug said, we’ve never had any experience with cancer treatments before, so I didn’t know what to expect. This was the best, if you’re going to have cancer treatment, this is a great one to get.

First-Hand Experience with CD20 Monoclonal Antibody Therapy

Samantha, we gave you venetoclax with rituximab. Recently, there is a new antibody called obinutuzumab which is another, new version of that antibody. Obinutuzumab is given at the same schedule as you received, and similar to your reactions with rituximab, it can cause significant reactions for patients. Specifically, obinutuzumab can cause reactions within the first one or two doses. The reason we didn’t put you on that antibody initially was because you were in the hospital with all these complications, specifically a blood clot, so we didn’t want to put you on an antibody that can potentially have some significant reactions. Therefore, we went with rituximab, which is gentler to get in, and has less of the reactions we typically see. You took the rituximab for a total of six months, correct?

: Next, we did venetoclax for approximately one year.

: What testing were you having? When you were coming to see us, were we doing only blood tests, or were there bone marrows and CT [computed tomography] scans involved?

: We did blood tests and a bone barrow test. In December, six months after the diagnosis, we did a bone marrow test, and then six months after that we did the blood tests, which were MRD [minimal residual disease]-negative. However, in the middle of treatment it was all blood work.

: Samantha mentioned neutropenia or low blood counts when we were giving venetoclax. Something patients who are taking venetoclax would know is that venetoclax can cause low blood counts, especially a low neutrophil count, which are the infection-fighting cells. Often, patients require their doses of venetoclax to be reduced. The standard dose of venetoclax is 400 mg once daily, and it is important to remember that this dose is started in a stepwise fashion. Typically, you start at 20 mg for one week, then you do 50 mg for one week, 100 mg for one week, 200 mg for one week, and then you reach 400 mg, which you then keep taking.

It is important that you have the stepwise approach. The reason is that venetoclax is a powerful drug that can cause tumor lysis syndrome. Venetoclax can kill cancer cells very rapidly, and it can create a lot of problems if it is not done in a stepwise manner. Once the patient is on a full dose of venetoclax, often they can have low blood counts. In that case, we have to cut back on the dose of venetoclax, so from 400 mg to 300 mg, or 200 mg, or 100 mg. Samantha, which dose were finally decreased to? Were you taking 100 mg or 200 mg of venetoclax?

:I have patients where the dose could be reduced to 100 mg or 50 mg because they couldn’t tolerate that medication. However, there are a lot of patients who can tolerate the full dose. Many times, we do what is called growth factor support, called GCF, which is an injection that can boost the white blood cell count. Samantha, did we give you an injection to boost your white blood cell count?

: That is somewhat common when we are using the venetoclax plus the antibody regimen that we have to consider giving to patients to keep their white blood cell count—specifically the neutrophil count, the infection-fighting cells—in the normal range. Samantha, congratulations for achieving MRD-negative remission! That is the best possible option we could have. I briefly wanted to comment on MRD because that is terminology you will hear from your doctors many times in CLL [chronic lymphocytic leukemia] centers. Doctors may be checking for MRD, and patients then want to know if they’re MRD-negative and how we are testing for MRD.

MRD stands for minimal residual disease, which is typically detected by a test called flow cytometry. It can be done either in the blood or the bone marrow. This test typically looks for one cancer cell in10,000 white blood cells. If it is present at that level, then that’s MRD-positive. If it is not present at that level, the test is negative, which means that you are MRD-negative. That analysis has been well established in the field of CLL. For patients who are on venetoclax-based therapies, one of my objectives as a doctor is to get them to MRD-negative remission. We know that for patients who achieve MRD-negative remission their response will typically last longer than patients who still are MRD-positive at the time we stop the therapy with venetoclax.

CD20 Monoclonal Antibody Dose Adjustment and MRD

: We started Samantha on treatment with venetoclax with an antibody called rituximab. The reason we chose venetoclax for her was that it was a time-limited therapy for our patients. Venetoclax is typically combined with an antibody. There is an antibody called obinutuzumab, which is approved in the frontline setting, and there is also an antibody called rituximab, which is approved in the relapsed/refractory setting when you combine it with venetoclax. The reason we combine venetoclax with an antibody is because studies have shown that if you combine them, the chance of achieving a deep remission, called an MRD [minimal residual disease]-negative remission, is higher. Using venetoclax in combination with an antibody has become the new standard.

There are other therapies available for patients with CLL [chronic lymphocytic leukemia], including drugs such as ibrutinib and acalabrutinib. We still have a role for chemotherapy, such as FCR [fludarabine, cyclophosphamide and rituximab], which is a chemotherapy regimen, for a very select group of patients. The majority of patients today are receiving targeted therapy. Samantha, we discussed these therapies with you, specifically venetoclax, in addition to ibrutinib and acalabrutinib. Acalabrutinib was not available at that time, but ibrutinib was. What information led you to proceed with the venetoclax therapy?

The appealing aspect of the venetoclax treatment was it being about one year in length. You said venetoclax was either one or two years in duration, depending on how I responded, and I wouldn’t have to be on a drug for the rest of my life. You said there would be little to no side effects. As I had a minor blood clot in one of my lungs, there was a risk of the other therapy you mentioned not being a good fit. Therefore, being a new patient with a brand-new diagnosis and not knowing anything about leukemia, I deferred to your expertise.

What I thought was interesting was that rituximab/venetoclax was not actually an approved first-line treatment at that time. However, understanding that you were working on the treatment personally, and seeing that it had such good results as a new treatment, was encouraging.

: Similar to Samantha, we have patients coming for new treatment with CLL, and there are many options available for them. We have venetoclax, which is what Samantha received, but we also have treatments with ibrutinib and acalabrutinib. Specifically, those treatments involve pills that are supposed to be taken for life. They work well and control the leukemia as long-term therapies. Pros for these long-term therapies include them being somewhat easier to get started with. Moreover, you don’t have to monitor the blood counts that often, and it doesn’t lower the blood counts often as well. Thus, there is an increased ease of getting started with the treatment, although these therapies are supposed to be taken long term.

I present both the options to the patients, lifelong therapy versus one-year therapy. Then I let them decide which therapy they want based on their lifestyle and how often they want to come to Houston to see us. If you are starting on venetoclax and if you are doing the infusions, you must come once a month. However, if you are on these other pills, it is fewer visits to the doctor early on. Now we have many options for our patients with CLL. We can choose for the patients and let them decide which option they want. Regarding side effects, the only thing you had Samantha was the neutropenia, the low blood counts?

That aside, a small number of patients complain of loose stools or skin rash. But you did not have those side effects, correct?

I did not have any of those side effects.

: That’s wonderful. Most patients do not know they’re receiving the treatment because they feel fine. And it’s only when they go to the doctor, and they check blood counts, will they say, “Oh, your neutrophil count is low, we need to hold the drug." However, you won’t feel any differently if you have a low neutrophil count because your body won’t tell you anything is wrong.

Comparing Samantha to other patients in the practice, it is very similar. Most of the time we deal with monitoring the blood counts, and calling the patients and letting them know what their blood counts are. But if you ask for symptoms, “are you having any side effects from the drug itself, like nausea, vomiting, or diarrhea,” those things are relatively few. Very few patients have those side effects.

The Patient's Role in Deciding a Treatment

: As we started the therapy, if I recall correctly, we tested your bone marrow at the six-month mark, right? You started sometime last year, the summer of 2019. We tested your bone marrow six months later, which showed MRD [minimal residual disease]-negative remission. That’s the best possible remission you could achieve, and you achieved it within six months of the therapy. That’s really wonderful news. Then we kept you on venetoclax for six more months because the recommendation is to do one year. At that one-year mark, instead of repeating a bone marrow test, we just did a blood test, which again confirmed that you had MRD-negative remission. We stopped venetoclax at that time, as per the plan, and I think now you have been off for a few months now, or maybe more than that?

: Since June, so three months. We saw you recently, but we’ll check your MRD again in the blood probably in a few months, on a six-month basis. One of the objectives for a lot of patients is to achieve MRD-negative remission. Back in December when you first learned that you achieved MRD-negative remission, or MRD zero, how did you feel? What was your reaction? What was going on in your mind?

: I’ll start. Honestly, the whole thing seemed like a dream. It wasn’t real the way it started so abruptly. Next thing you know we’re in the hospital, then we’re going through treatment, and six months later there’s no sign of the disease, so obviously something that was wrong was fixed quickly. Not having any side effects from treatments and then being MRD-negative after six months, it made me question if this really happened. It was such a relief because in the back of my mind, there’s always the question of: how is this going to affect us down the road, years from now? To have such a positive outcome so quickly, it was a big relief to be able to get that result.

: I agree with that. It was a huge relief because even though my journey was unexpected, and relatively easy, there’s still the shock of being diagnosed with cancer. Being a patient with cancer was never in my plans. In the back of my mind, even though all the physical signs are that I feel fine, my daily routine hasn’t changed at all other than I was going in to have the blood work. And like you said, I never knew from visit to visit what my numbers were going to be because I felt the same every single time. It wasn’t until I would get the results back, and you would say, “Oh, your white blood cell count is a little low. We need you to do this, or we need you to do that” that I would know. It’s a disease that doesn’t give you any outward signs or symptoms. You just live with it. That on its own is scary; you’re really sick but you don’t know it. To get the results that I was MRD-negative was a huge relief, and I felt joy, elation, and gratefulness that you and I were able to meet, and I was under your care. I feel that was a huge blessing that I was able to be your patient. I feel lucky.

I would say luck came into play because we were told after Samantha was admitted that first night that you don’t normally go straight to MD Anderson Cancer Center and get admitted and start treatment. It works through a process where you’re referred and then you go for a visit. Somehow we did a shortcut and got right to you and right to the treatment. It’s such a relief knowing that; and we understand the chronic lymphocytic leukemia is still there. It will be monitored and that’s part of it, but to know that the treatment works. You also told us that with these next tests as part of the follow-up, you’re able to see slight increases in abnormal counts in the blood that will allow you to start treatments again, before it ever gets to a severe level. Having that assurance that there are these little monitoring processes that will be able to allow for treatment at a lower dose and sooner is very comforting.

: I’m glad you guys came right away, because I think the concern there was acute leukemia when you were diagnosed. But we generally tend to get those patients ASAP to Houston because we know there is a sense of urgency to manage these patients.

Achieving Minimum Residual Disease Remission

: How often were you communicating with the team? Were there other support networks you were looking at close to home? Did you use online resources? What was going on besides your interactions with me as a physician? What other team members were you reaching out to for questions outside of MD Anderson Cancer Center, be it online or elsewhere?

:You mentioned your physician’s assistant, Victoria. She’s a great resource. I emailed her several times with questions, and she has provided great support. Because I was coming to the clinic so often for a year, I became familiar with the people that work there, such as the laboratory technicians, the nurses, and the administrative team. However, one of the things that really stood out to me in addition to becoming friendly with the staff, was that every time I walked inside I was called by name despite MD Anderson being an institution that actively treats hundreds of thousands of people.

That is huge for someone who is going through a treatment. For those of you who don’t know MD Anderson, it’s an enormous campus with thousands of people who walk through their doors every day. It’s a scary thing to be a number. I know a lot of people going through similar treatments, and they’re known only by their medical record number. I will tell you Dr. Jain, I never even memorized my medical record number. From the beginning, I said I was not going to be a number; I’m going to be a person. I was never treated like a number. Every time I walked in the door, I was called by name, and that is a huge comfort for someone who is facing a scary thing.

Outside of the hospital and your clinic, we had a good support system here in town. We had great support from our family, and our church was very integral in supporting us. My advice to anybody who receives a sudden diagnosis is to lean on those people, you’re not bothering them. Your friends and your family want to support you, and I was able to lean on mine.


I am the kind of person who didn’t want to hear any bad news. When I received a diagnosis, I made my mind up at the beginning that whatever my team and my doctors said, I was going to follow. I wasn’t going to do any research on the internet, and I wasn’t going to let the internet tell me that I was going to die tomorrow. In my case, ignorance is bliss.

I needed to know what we were dealing with, so for me the information was important. As Samantha mentioned, whenever we had a question, whenever we needed time to discuss something with somebody, you were available, Victoria was available, and everybody on your staff was available. They took the time to not only give us the answer but to also discuss it with us. I wanted the information. I learned about blood work, lab tests, and things that were foreign to me, but I needed to know those things. That helped me to understand the information you were giving us.

Samantha is a very positive person. Negative is not good, so we kept everything positive. There was never a doubt that the treatment wouldn’t work. There was never a doubt that she wasn’t going to be MRD [minimal residual disease]-negative. It was just positive reinforcement to each other that she’s not the only one going through it, we’re going through it together. By utilizing your staff and support group from MD Anderson, and through our church and family, we kept it positive.

For the broader audience of patients with CLL [chronic lymphocytic leukemia], there are also resources that are available. Within the Leukemia & Lymphoma Society, they have webinars with CLL doctors explaining information. There are other professional societies involved in spreading education, including Patient Power and the CLL Society. Those are good resources for patients as they have information on CLL and some of the other topics we have discussed.

There are patients who may need financial help with accessing these drugs because they are expensive. Often, there are copays involved, which many patients may have financial difficulty with. There are financial resources available from societies and pharmaceutical companies, which you should ask your doctors, their respective teams, and the pharmacy team for information on. Often, particularly in our center, my team in the clinic is able to get financial resources for patients who are not able to afford those medications. Certainly, there are many resources out there, and I believe if you’re diagnosed with CLL, you should look at them and take advantage.

Chronic Lymphocytic Leukemia Support Network

Doug, what advice do you have for friends and family members of patients with CLL [chronic lymphocytic leukemia]?

The best advice is listening to the people who are most affected by it. You should try to understand what the patient is dealing with because unless you are that patient, you’re not going to understand it.


The patient is going to have a completely different mindset as to what’s going on. I looked at the situation very pragmatically and wanted to know the treatment and what the expected outcome may be. However, you also have the emotional side and the mental aspect of being the one diagnosed. You must step back and not be you for a while. You must try to be the person that you’re caring for and see things from their perspective. At times, the patient’s reaction isn’t what you theoretically may consider a logical reaction. Logic goes out the window when events like this come into your life. You can’t just look at things as a step-by-step process. You must put yourself in their position.

Additionally, you should look to bring in as many people as you can to help you gather the relevant information to help you present it. You may not always have the right answer, or you may not be able to reflect that answer in a way that gets through to the patient. Use the people who are in your life. Personally, we have a strong family and church in addition to friends we’ve known for a long time. If there’s something I need to get through to Samantha, and I can’t figure out how to do it, our friend can talk to Samantha in a way that I can’t. Use the people in your life when you need to get information or explain something differently. However, the biggest part is to listen, and do not make it about yourself. Ultimately, it is not about you at that time.

What advice do you guys have for patients and caregivers who are listening? Once they’re diagnosed with CLL, what should they do? What final advice do you have on where should they go and what should they consider?

I would recommend going to a center or a provider that is an expert on CLL as that makes a huge difference. In our case, we have a good network where we live but not the best, hence why we travel to Houston to seek care. Additionally, pay attention to your body and the signs your body is showing you. CLL can be a hidden disease that may sneak up on you. In my case, in the months leading up to my diagnosis, my body was likely telling me that something was wrong with bruising and similar ailments. If you observe any kind of changes, go see a doctor to find out if anything is going on.

Primarily, a diagnosis of CLL is not necessarily bad news. It’s shocking news, and it’s somewhat life changing realizing you have a chronic illness, but it’s also not life changing as it’s not going to change your life extensively physically. Do not panic because there is help, and there are some great treatments. If you’re going to get a cancer diagnosis, this is not a bad one to get. I feel very blessed.

The year that I was being treated following the diagnosis, it has been one of the best things that’s ever happened to me. I’ve been the happiest I’ve ever been in my life because it was a blessing to be diagnosed and to have the support and treatment that we’ve experienced. If you are diagnosed, it’s not the end of the world, it’s the beginning.

: It’s a negative when you get the diagnosis, especially one that it is chronic and will be with you. However, it can be a positive as it allows you the opportunity to focus on things that are important. The treatment, unlike some of the other chemotherapies and cancer treatments, is not something that physically drains you and leaves physiological effects that affect you on a day-to-day basis. Therefore, you’re able to go back to your life and continue to do things you do normally. For us, it helped to refocus on what was important. Specifically, that was the time we have together and being able to spend that time doing things that are meaningful. While the diagnosis is a negative and a life-changing event, it doesn’t necessarily have to change your life. You can continue to live your life. The biggest objective is be positive, because there are such wonderful treatments. Utilizing the right mindset and positive attitude, it’s something you can live with and come out stronger on the other side.

Advice for Patient's and Caregivers

: Has anything changed for you in the last year? From a couple of years ago, before your diagnosis to now, looking forward to the future in your life, your family, how have things changed, if they have changed?

: The biggest change is probably in our mindset. Like a lot of people out there, we were busy all of the time, constantly going and trying to get a move on to the next thing. We slowed down a lot. In December when I was just MRD [minimal residual disease]-negative, we made the decision then that our life is a gift and we aren’t going to waste it.

We want to make a difference somehow in other people’s lives outside of our family. We were looking for ways to get out there and start helping people, and then COVID-19 [coronavirus disease 2019] hit. I’m sad to say that we haven’t been as impactful as we would have liked up to this point, but we’re hoping that soon we will be able to do more impactful things that help a broader range of people. I’m really looking for opportunities to do that. But when you get a diagnosis of something like this, you’re confronted with the idea and you have to face the reality that you have one life, and you must make it count.

One of the most reassuring things that you told me early on in the hospital was that CLL [chronic lymphocytic leukemia] is a chronic illness and we’re going to treat it as a chronic illness. We monitor it and maintain it. You live with it and go on, so that’s what we’re doing. Our priorities have shifted, and we focus on things that are important and let the little things go. But as far as day-to-day activities, I’m feeling fine. The activity level has not changed.

It’s interesting because there are two different ways to look at it. One is you don’t want to let the diagnosis affect your life, change your life, and start worrying about it daily. But at the same time, you do have to keep it in mind that it is there. The easiest part for us is to, as Samantha mentioned, realize each day that goes past is one less day you have. What you do with that day becomes more important.

: This is wonderful. Thank you, Samantha and Doug, for sharing Samantha’s story. This will be very helpful for many patients and caregivers to hear the journey of a newly diagnosed patient with CLL, starting venetoclax and how it has changed, or perhaps not changed, their life. Thank you for listening.

Treating With Venetoclax for Chronic Lymphocytic Leukemia: Samantha’s Story