Staying Within the Lines: Advice on Adhering to Myeloma Treatment

REVLIMID (lenalidomide), Pomalyst (pomalidomide), Thalomid (thalidomide) and Ninlaro (ixazomib) are oral therapies used to treat multiple myeloma, and this list will continue to grow. Of all drugs in the oncology pipeline, 25 to 35 percent are oral, according to a 2009 study.

What does this mean to patients? They spend less time at the clinic and more time doing what they want when prescribed an oral therapy. These therapies are less problematic on a patient’s work schedule and are convenient when traveling. Oral medications are easy to administer. Most patients prefer swallowing a pill versus being stuck with a needle.

However, with patients responsible for the administration of their own therapy, the issue of adherence needs to be addressed. Medication adherence refers to whether patients take their medications as prescribed (dose, timing, with or without food), as well as whether they continue to take the medicines at all. There is a 37 percent rate of nonadherence to oral anticancer agents, research by one group in the pharmaceutical industry shows.

Why would a patient not follow doctor’s orders? Sometimes they just forget. Complicated dosing schedules, fatigue, chemobrain and depression can contribute to forgetfulness. If a patient is taking a maintenance dose to keep her disease in remission for as long as possible, the urgency of getting the myeloma under control is no longer an issue, and she may become complacent. If non-adherence is due to forgetfulness, electronic reminders via text messages, smartphone applications, alerts or e-mails may be helpful. Smart pill bottles that send and collect adherence data are being developed to help patients remember to take their medications. Pillboxes can also be used. Friends or family members can help support medication adherence by providing gentle reminders.

Other times, patients may be unintentionally non-adherent. A patient may take his medication in the evening instead of the afternoon or with food instead of on an empty stomach. Patients need to be educated so they understand that certain drugs work best on an empty stomach or with food, and that taking them differently may decrease their effectiveness. Treatment calendars (ninlaro.com/dosing-calendar.pdf) that outline complicated dosing schedules should be employed. These calendars should include all medications the patient is taking, not just myeloma therapies. Icons can be used to make them easy to interpret. These calendars can be paper, electronic or application-based on smartphones. Ideally, they should be created by the patient’s health care team. Caregivers can help develop a calendar or set reminders/alerts on their loved ones’ smartphones if a treatment calendar is not provided.

Patients may also deliberately change the way they take their oral medications in the hopes of controlling side effects. Since patients are not making weekly clinic visits, sometimes their side effects are not monitored as closely as they would be under the supervision of an infusion nurse. Once again, education is key. Side-effect management should be discussed with the health care team and with other patients. Online patient communities such as Smart Patients (smartpatients.com) provide a forum where patients can share information and ask questions. In-person support groups also provide patients with helpful tips. The International Myeloma Foundation has a state-by-state listing (support.myeloma.org) of all its affiliated support communities. Patients who are educated on side-effect management may be less likely to discontinue therapy because of preventable complications, especially if their therapy is ongoing for several years.

If the process for obtaining a prescribed medication is cumbersome, the prescription may not get filled. Patients cannot take medications they do not have, and caregivers can be a big help here. Caregivers should monitor when the next refill is needed and help with placing and picking up the order. Sometimes a patient may need a blood test prior to a prescription being filled. Caregivers can accompany their loved ones to the lab.

Some patients stop or spread out the doses of their oral medications because of costs that are overwhelming for them. Treatment with oral anti-myeloma medications can be expensive.

Pomalyst costs about $147,302 if a patient takes it for a year. Under a typical pharmacy benefit plan, patients might be responsible for 20 percent of that cost.

Maintenance treatment is usually ongoing until disease progression or until side effects become unmanageable. This could be years. Costs add up, which could become a significant financial burden. Tough decisions sometimes need to be made: Do I continue maintenance therapy, or do I pay my mortgage? Patients with cancer go bankrupt at 2.5 times the rate of the general population. Talking with your myeloma specialist and fellow members of a myeloma support community can help you weigh the pros and cons of continuous therapy. Fortunately, there is financial assistance available to help pay for medications. Most manufacturers offer financial assistance or reimbursement programs. Celgene has its Celgene Patient Support program (celgenepatientsupport.com) and Takeda offers Ninlaro 1Point (ninlaro.com/cost). In addition to these programs, many foundations, such as the Leukemia and Lymphoma Society (https://www.lls.org/support/financial-support/co-pay-assistance-program), the Patient Access Network (panfoundation.org) and Good Days (mygooddays.org) provide patient assistance.

Self-administration of oral medication empowers patients and may lead to a better quality of life. Patients who have a support network, strategies for managing side effects, financial resources and an open relationship with their health care teams may be more likely to stay on their treatment courses. Everyone needs to work as a team to address the new challenges that self-administration brings.