Nitin Jain, MD, MD Anderson Cancer Center

: 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.

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Lifestyle Changes After Being Diagnosed with CLL

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

: 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

: 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.

Nitin Jain, MD, MD Anderson Cancer Center

Lifestyle Changes After Being Diagnosed with CLL

Advice for Patient's and Caregivers

Chronic Lymphocytic Leukemia Support Network

Achieving Minimum Residual Disease Remission

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