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Taking the Long View

Chronic lymphocytic leukemia can now be managed as a long-term condition, and there are new ways loved ones can help.
BY Beth Fand Incollingo
PUBLISHED November 09, 2018
AN EVOLVING UNDERSTANDING OF cancer, along with the development of new therapies, have made it possible to treat some cancers as long-term chronic conditions. Due to regimens that involve either surveillance or oral drugs, patients can carry on with their lives for decades with little interruption.

The blood cancer chronic lymphocytic leukemia (CLL), for example, can in many cases be handled with watchful waiting. Although chemotherapy is one approach for those who need treatment for more rapidly progressing cases, many can instead opt for a lifelong daily pill — any of several novel targeted drugs that work by interfering with the activity of cancer-driving proteins. 

CURE® spoke with Richard Furman, M.D., director of the CLL Research Center at Weill Cornell Medicine and NewYork-Presbyterian, to learn more about life with CLL, the pros and cons of oral drugs versus chemotherapy, and ways caregivers can support their loved ones who have the disease.

CURE®: What’s unique about the CLL experience that patients and their caregivers should consider?

Dr. Furman: The greatest source of anxiety for patients is the watch-and-wait strategy we use. It’s incredibly anxiety provoking for patients to not treat their disease and just watch it get worse. This period has been renamed “watch and worry” by patients. There are patients I see every three months who I have to talk out of treatment because they’re fine and don’t need it, but they are very uncomfortable doing nothing. Many patients express a sense of relief when treatment is initiated, because they are finally doing something to treat their disease. 

When patients with CLL need treatment, how can caregivers help?
By and large, chemotherapy for CLL will be associated with short-term side effects, including infusion reactions, fatigue, nausea, weakness and low blood counts. Long term, patients feel well, with immunosuppression being the most significant potential side effect, although one the patient is unaware of. Based upon this, patients will need help from caregivers in the short term, including being on hand in the clinic during the infusions.

The oral targeted drug Imbruvica (ibrutinib) can cause bruising, joint aches, atrial fibrillation, hypertension and diarrhea, and we have patients not knowing whether these are related to just the normal processes of living and aging or to the drug. Having a good caregiver with whom they can discuss how they are feeling will help them assess their symptoms. Patients are often hesitant to talk about side effects with their doctors out of fear the physician might recommend discontinuing the treatment. It’s nice to just to be able to talk it through with someone to assess it.

What about the possibility of infections developing during treatment?
Some chemotherapies can cause neutropenia (a low count of white blood cells called neutrophils) that puts patients at risk of infections. Although the chemotherapies used in CLL posea much lower risk of infections than most other chemotherapies, the risk is even less for novel targeted agents.

(Although patients with the disease may also have impaired immunological function caused by the cancer itself,) I don’t think there’s anything patients with CLL need to do specifically or specially to prevent infectious complications of the disease besides good hand-washing. I advocate for normalcy for my patients. The last thing we want to do is affect daily life, so I tell my patients to ride subways, be in crowds and hang out with everybody, especially children.

Should caregivers attend doctors’ appointments with the patients they are helping?
I always recommend a second set of ears. Sometimes we do see disconnects between what a doctor says and what a patient hears and then relays to his or her caregivers. Also, having the caregiver hear it from the physician spares the patient the burden of having to relay it all. This is not always necessary and depends on each individual. Everyone has to decide what works for them.

What should caregivers and patients consider when deciding whether to tell friends and loved ones about the diagnosis?
A lot of people don’t want to be treated differently by others, so they keep their diagnosis a secret. I’ve always advocated for the philosophy of being open and honest, especially with a patient’s children. Having cancer should not be associated with a stigma. Discussing the diagnosis early in the course of illness helps, because having your kids see you during this period of watch and wait, when you are not having any impact of the CLL upon your day-to-day activities, will make it easier for them to adjust and understand your diagnosis. If you wait until something bad happens, then it becomes a very hurried discussion during an emergency and a shock, making it harder for them to deal with. I recommend talking about it earlier rather than later. In watch and wait, it’s nice and reassuring for the kids to see that you are fine and that having the disease isn’t necessarily a death knell.

Is social media focused on CLL helpful to patients and their caregivers?
A tremendous number of forums are available to patients. One I participate in is a Groups.io talk list called CLL/SLL that is used by about 1,500 patients. Everyone writes emails to be posted on the list, allowing others to comment, ask questions and share experiences and answers. I participate on this forum, providing some medical oversight and answers.

The talk list is a great source of information and camaraderie for patients and caregivers, but for someone who doesn’t want to be information overloaded, it can be a source of anxiety. It is very important for people to remember that there is a great deal of variability in the course of CLL, and what is happening to one person may not have any relevance to them. One of my patients started this list approximately 11 or 12 years ago to help other patients. For him, being able to devote himself to getting information out to others was a great source of solace.

Another source of information is the CLL Society, which has a website that puts out newsletters and is run by a patient who is also a family physician, Brian Koffman, M.D. There, you can get a patient’s perspective plus a lot of facts and resources.

What kinds of financial toxicities might crop up for patients and caregivers affected by CLL?
Oral drugs for CLL (and all cancers) are typically not covered by health insurers at a $20 copay, like other oral medications are, but at 20 percent — and 20 percent of a $10,000 drug is a lot. Trying to pay or worrying about paying creates tremendous stress for patients and caregivers. The vast majority of patients do qualify for some type of assistance and are able to get the medication without a large copay. Unfortunately, we do still see some patients who are required to have a large copay — often $800 to $1,000 a month — to get the medicine. The rules governing this are quite byzantine and very difficult to navigate.

A lot of patient assistance programs are offered by pharmaceutical companies, but many are not available to patients with only Medicare due to federal statutes that restrict pharmaceutical companies from providing financial assistance. If you don’t have significant income or Medicare, there are programs to help cover your copay. It’s people who have some income who run into trouble.

We rely on a couple of organizations that devote a great deal of resources to trying to help patients navigate this convoluted system. Onco360 is one pharmacy that provides significant assistance for patients in ordering their drugs and also applying for programs that will help cover copays.

Are any current clinical trials of interest to people with CLL?
There are three that are very exciting. We just completed an international study combining Imbruvica and the targeted drug Venclexta (venetoclax), which has left a large proportion of patients negative for minimal residual disease (meaning they no longer have any detectable CLL) after six months of treatment. This combination has remarkable efficacy and tolerability, and I hope it will allow us to treat patients for a fixed duration of one year and then be done with therapy.

In another study, because some patients don’t tolerate Imbruvica that well, we’re looking at the experimental targeted drug umbralisib plus Venclexta. Umbralisib is a PI3K inhibitor (while Imbruvica is an inhibitor of Bruton tyrosine kinase). When combined with Venclexta, (umbral­isib) should be just as effective (as Imbruvica).

Finally, there is a group of patients with CLL who develop a complication called Richter’s transformation. This is where the CLL transforms into an aggressive lymphoma. Once this occurs, treatment is very aggressive, difficult to tolerate and often ineffective. We have several factors that help us predict who is most at risk of developing a Richter’s transformation. Using this information, we hope to inter­vene early in the disease course in an attempt to prevent the Richter’s transformation from developing by using the Bruton tyrosine kinase inhibitor Calquence (acalabrutinib).

What final thoughts would you like to share with patients and their caregivers?
In the olden days, when people got chemotherapy, they died from either the chemotherapy or treatment-resistant disease. Nowadays, using oral drugs that are more effective and better tolerated instead of chemotherapy provides us with a great opportunity to make CLL a truly chronic disease. It is our hope that most people with CLL could expect to have a normal life expectancy and control their CLL with a pill a day, much like is done for high blood pressure.

This article is part of the Bringing the CLL Community Together program. Funding is provided by an unrestricted educational grant from Pharmacyclics, an AbbVie Company, and Janssen Biotech, Inc.
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