According to CureToday.com, those who have been diagnosed with chronic lymphocytic leukemia, CLL, are now living longer than ever before. This feat can be attributed to the influx of four new extremely effective treatment options for those with the disease in the past couple of years. But though this is generally good news, it also means that those with CLL have to face a few other challenges as well.
CLL Explained
Chronic lymphocytic leukemia is often abbreviated as CLL and it is a rare form of cancer in the blood and bone marrow. CLL is a type of leukemia, which is the umbrella term for cancers of the white blood cells. In the body, white blood cells act to fight disease and infection, so a malfunction of these is often highly problematic. Chronic lymphocytic leukemia specifically deals with the issue of too many lymphocytes, a type of white blood cell, in the patient’s body. It is the second most common type of leukemia in adults, and many of those with the illness show no early symptoms. As time progresses, however, symptoms of those with CLL may include enlarged but painless lymph nodes, fatigue, fever, pain in the upper left portion of the abdomen, night sweats, weight loss, and frequent infections.
There are treatment options available for those with CLL, though the cause of the cancer is still unknown. To learn more about this type of leukemia, read this page.
Post-CLL Struggles
Though more and more people with CLL are becoming leukemia-free due to the effectiveness of new treatments, that means there are also new concerns to be dealt with. For example, some outstanding issues include late-effects, adherence, treatment planning, and the risk of secondary cancers developing.
To try and combat these post-cancer problems, Matthew S. Davids, M.D. from Harvard Medical gave his two cents on how patients can be in charge of their own care. We think he’s a pretty credible source, as he is also the associate director for the Center of Chronic Lymphocytic Leukemia at the Dana-Farber Cancer Institute.
“How can a patient with CLL make sure that their preferences, needs, and values are met during a discussion with their care team?”
Dr. Davids emphasizes the importance of patients seeking out their own answers as well as questions before talking to a healthcare professional. He also believes in the use of support groups as resources to learn more.
“Coming to the visit informed is helpful. There are a lot of online resources that patients can use to become better in-formed. One is a patient group called the CLL Society. In addition to a website, it has support groups that are very informational and are in a growing number of cities across the country.”
“I would advise patients to make a list of questions ahead of time, because it’s hard to remember them when they are there, and the visit goes by quick. Being prepared with a list of questions comes in handy and helps keep patients organized,” shared Dr. Davids.
“Is there anything specific to CLL treatment or survivorship planning that a patient should know?”
Again, Davids focuses on the patient coming prepared with questions for discussion before speaking with an oncologist or another cancer healthcare provider. There are a few good things to keep in mind.
“When an oncologist proposes a treatment plan, great questions to ask are: What are the alternatives? And, what are the pros and cons? In addition to asking how effective a treatment is, I always encourage patients to ask about side effects. Another good question is, what would happen if they decide to not get treatment now? Sometimes doctors who don’t see as many patients with CLL may have a lower threshold to start treatment, whereas if you are seen by a doctor specializing in CLL it’s possible they may recommend waiting longer to start treatment. I think it is helpful for patients to see a CLL specialist at least once early on in their course to have them on their team and to partner with their local oncologist,” said Dr. Davids.
“Are adherence issues associated with this disease? If so, how can patients manage this problem?”
Dr. Davids discusses the typical treatment schedules, as well as how often they must follow up with patients. As described by Davids, there doesn’t seem to be huge issues with adherence.
“We used to have just chemotherapy that we would give for a time-limited period of about six months. New oral therapies like Imbruvica (ibrutinib) can be highly effective, but requires continuous therapy, sometimes for years at a time. Imbruvica is once a day, but some other drugs are twice a day. Being on any medication for the long term is challenging for adherence, so we try to check in with our patients more to make sure that they are taking their drugs as directed, because unlike with chemotherapy we aren’t administering therapy in our offices anymore.”
“CLL patients tend to be on the older side, as the average age at diagnosis is 72. I advise these older patients, who are often on multiple chronic therapies, to use a pill box that is labeled with day and time and that they lay out their pills the week before. This way a patient can see what they’ve taken each day and know that they’ve taken the right medication at the right time,” Davids said.
“Because it is a chronic illness, what late effects might show up in patients?”
Davids elaborates on the fact that there is potential for a compromised immune system in those with CLL.
“One of the issues that arises even in patients with CLL who have never been treated is that over time, the disease can compromise the immune system,” Dr. Davids said.
He also emphasizes the importance of routine blood testing and various doctor appointments.
“For patients who have been treated, particularly those who had chemotherapy-based regimens, there are some potential late risks in terms of second cancers, such as acute myeloid leukemia or myelodysplastic syndromes. It’s a pretty rare phenomenon, but it can happen, so these patients should have regular testing of their blood counts. . . I also advise patients to see a dermatologist on a regular basis, because we see skin cancers more frequently in patients with CLL, and they tend to be more aggressive. It is important to stay on top of that and address it proactively.”
Finally, Davids stresses the importance of routine vaccinations.
“What message would you share with someone living with CLL?”
Dr. Davids urges patients to stay optimistic about their condition. The prognosis for those with the condition is becoming better and better, so overall patients should have high expectations.
Expanding on this, Dr. Davids says, “Be hopeful. We’ve made tremendous progress in the past few years, and patients with CLL are living much longer than they ever have before. We can already cure some patients with CLL, and we are working on clinical trials with all of the promising new targeted drugs that will hopefully develop curative strategies for the majority of patients with CLL in the near future.”
To read more about this Q&A on chronic lymphocytic leukemia, click here.
