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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.”

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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.

How to Make Confident and Informed CLL Treatment Decisions

How to Make Confident and Informed CLL Treatment Decisions from Patient Empowerment Network on Vimeo.

How can you engage effectively in your CLL care? Collaborating with your doctor and playing an active role in your care can lead to improved outcomes. This animated video reviews essential steps and important considerations for making informed and confident CLL treatment decisions.

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What Are the Goals of CLL Treatment?

Transcript:

Elena:

Hi, I’m Elena and this is my husband, Bill.

Elena:

Several years ago, I was diagnosed with CLL, which stands for chronic lymphocytic leukemia. CLL is a blood cancer that starts in the bone marrow. It’s the most common type of adult leukemia.

When I was first diagnosed, I wasn’t treated right away. It was confusing at the time, but my CLL doctor, Dr. Singh, told me that most people with CLL don’t need to be treated immediately.

Here’s Dr. Singh, he can explain it further.

Dr. Singh:

Hi! I’m Dr. Singh, and I’m a hematologist specializing in the care and treatment of people with CLL.

At first, we approached Elena’s CLL with “watch and wait” or active surveillance. Through physical exams, blood work and frequent communication, we monitored how her CLL was progressing over time.

Elena:

I was in watch and wait for about a year—then, I begin to have symptoms that interfered with my daily life. I had drenching night sweats and I felt so exhausted.

Dr. Singh:

Right! An increase in symptoms is often an indicator that it’s time to treat a patient’s CLL. Elena’s fatigue and night sweats are common symptoms. Other symptoms can include enlarged lymph nodes or spleen, fever, unintentional weight loss and frequent infections.

In addition to an increase in symptoms, signs that it might be time to treat can include anemia or low platelet counts.

Elena:

So, once Dr. Singh let me know it was time to treat my CLL, he walked me and Bill through the goals of treatment.

And by that, I mean we discussed balancing my lifestyle with finding an effective treatment for my CLL.

Dr. Singh:

Elena let me know that she’s very social and enjoys riding her bike – we wanted to make sure she could continue doing the activities she loves.

The clinical goals of CLL treatment are to slow, stop or eradicate the cancer. I spoke with Elena and Bill about finding an approach that may get her CLL under control while preserving her quality of life.

Elena also had essential testing, including biomarker testing, which we took into consideration along with her treatment goals. We reviewed each potential approach to make sure we found the best, most personalized treatment option for HER CLL.

We discussed the effectiveness of the treatment option, and the likelihood of a recurrence a. And we reviewed what our next steps would be if the treatment plan needed to be adjusted.

Bill:

And I wanted to make sure Elena was able to continue feeling her best, so I asked about potential side effects for each therapy and how it could impact our lifestyle.

Dr. Singh:

Exactly! We discussed how each treatment option could affect Bill and Elena’s daily life. You and your doctor may also consider:

  • The financial impact of a treatment plan
  • Your age and overall health
  • The stage of your disease at the time of treatment
  • And Biomarker test results

Elena:

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

Bill:

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

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

Dr. Singh:

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

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

Elena:

Dr. Singh made Bill and I feel included in the decision-making process, as if it were a collaboration.

Dr. Singh:

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

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

Bill:

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

Elena:

Thanks for joining us.

What Are the Goals of CLL Treatment?

What Are the Goals of CLL Treatment? from Patient Empowerment Network on Vimeo.

What are some of the goals of chronic lymphocytic leukemia (CLL) treatment? Dr. Matthew Davids outlines some different treatment goals and how the goals are impacted by a patient’s age and other considerations.

Dr. Matthew Davids is Director of Clinical Research in the Division of Lymphoma at Dana-Farber Cancer Institute. Learn more about Dr. Davids here.

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Who Is on a Patient’s CLL Care Team?

Transcript:

Katherine:

With CLL, what are the goals of treatment?

Dr. Davids:

I like to say to patients, “The goals are to make you live longer and live better.” You want to obviously have treatments that prolong life, but you also want to have treatments that are helping with symptoms, and giving patients more energy, and making them feel better, and protecting them from some of the risks of the disease. And so, I think the goals do vary a bit based on the stage of life that patients are at.

I see a lot of patients in their 70s and 80s, and in those patient’s symptom control, having the disease be in a good remission, allowing them to live their life is a good goal. I sometimes see patients in their 40s and 50s, and some of those patients want to be a bit more aggressive and try to do a strategy that will get them a very long-term remission, and even potentially explore potentially curative strategies.

If I have a higher-risk patient with deletion 17p who’s young and fit, and they’ve already had some of the novel treatments, that’s where we start thinking about clinical trials of some of the cellular therapies like CAR-T cells that people may have heard of where you use the T cells from the patient to try to use that as a therapy to kill off the disease. Or even a bone marrow transplant is something that we have used historically in CLL. We don’t use it as often now, but for younger patients with high-risk disease it’s still a consideration to try to achieve a cure of the CLL even though the risks of that are significant.