For people diagnosed with multiple myeloma, sticking to a treatment plan is critical to achieving and maintaining remission (when treatments have successfully reduced cancer symptoms). Sticking with treatment — also known as treatment adherence — has also been known to improve quality of life, reduce out-of-pocket medical costs, and increase work-life productivity.
In the last decade, there have been many significant advances in cancer research, including new treatments. By partnering with your cancer care team — which may include your oncologist, primary care provider, and oncology nursing team — you can ensure that your treatment plan is tailored to your condition and needs. After initial treatment of multiple myeloma, which may involve high-dose chemotherapy followed by a stem cell transplant, maintenance therapy is usually prescribed. Maintenance therapy helps keep myeloma from relapsing (when a disease comes back after a period of improvement).
Maintenance therapy may include a combination of oral and injected drugs. Oral drugs used during maintenance therapy may include corticosteroids, such as dexamethasone and immunomodulators like lenalidomide (Revlimid), thalidomide (Thalomid), and pomalidomide (Pomalyst). Sometimes, injected drugs are given via an intravenous (in the vein) infusion or a subcutaneous (under the skin) injection. Injected drugs used for myeloma maintenance therapy may include daratumumab plus hyaluronidase-fihj (Darzalex Faspro), which has also recently been approved by the U.S. Food and Drug Administration (FDA) to administer via subcutaneous injection.
Because multiple myeloma is a chronic (ongoing) disease, sticking to your treatment plan is the best way to stay in remission and have a positive outcome. Myeloma treatment may sometimes seem daunting, scary, or time-consuming. Fortunately, there are many ways to overcome barriers to sticking with an effective treatment plan.
Treatment for multiple myeloma works best when the right treatment options are used for the prescribed duration. People who stick with their regimen have better outcomes than those who pivot from their recommended plan.
The purpose of a personalized treatment plan is not only to achieve remission from myeloma but also to extend the duration and quality of life. If you skip maintenance treatment or stop early, drugs aren’t given the chance to work as intended. Ultimately, not sticking with a myeloma treatment plan may lead to a relapse, worsening disease progression, increased out-of-pocket health care costs, and even a higher risk of death. You may also become resistant to previously effective medication if you stop and then restart it.
Treating multiple myeloma can have many complicated aspects. These may make it difficult to stick with a plan. Financial, emotional, and logistical barriers are just some of the challenges people with multiple myeloma face each day. Getting the right information and resources can help you overcome these obstacles and have an easier time sticking with your myeloma treatment plan.
Here are five ways to get what you need to stay on track with myeloma treatment.
Seek information about your condition from your health care team and other authoritative sources. Learning about multiple myeloma and your specific disease stage and progression can help you understand what is going on in your body. Understanding your treatment options can improve your confidence when discussing the potential risks and benefits of each with your doctor. You’ll also be more likely to stick with a treatment plan if it reflects your priorities and you actively participated in the decisions.
Reliable sources for myeloma information include the National Cancer Institute, the American Cancer Society, and the Leukemia & Lymphoma Society. You can also ask your doctor which sources they recommend.
It’s critical to communicate clearly with your doctor. Don’t be afraid or embarrassed to ask questions and seek clarification when you don’t understand something. Bring a friend or family member to doctor visits with you to help remember conversations and treatment plan details. You can also ask the doctor if it’s OK to record the conversation on your phone to review later.
Let your doctor know right away if you experience side effects from myeloma treatment, and keep them informed of any changes. There are often ways to manage side effects, and some side effects may fade over time. Your doctor can help you know what to expect and how to keep feeling your best during treatment.
Read more about how to talk to your doctor about multiple myeloma treatment.
If the cost of myeloma treatment is a challenge, there are resources that can help.
For many people, financial considerations are a concern when it comes to myeloma treatment. Be clear with your doctor about your financial situation and ask for affordable options to help you achieve the best outcome.
There are many programs to help with health care and medication costs. Look into programs with the Leukemia & Lymphoma Society, the Multiple Myeloma Research Foundation, and the HealthWell Foundation.
The cost of oral medication and treatment drugs can be expensive, but there are several copay assistance programs to help lower your out-of-pocket expenses. Learn more about the programs at CancerCare, International Myeloma Foundation, and Patient Advocate Foundation.
It can be overwhelming to remember your doses, organize your treatment schedule, and arrange transportation to doctor visits and follow-up appointments. There are several tools and resources to help with logistics, as well as reminders that can help you adhere to your treatment plan.
Use alarms to set medication reminders, or create a consistent routine for taking your medicine at the same time and place. If you feel comfortable with technology, there are many apps and resources on your smartphone that can help you manage care.
Many people have difficulty arranging transportation to doctor visits, treatment appointments, and pharmacy pickups. Depending on others can be uncomfortable and unsustainable, but there are resources available to ease the burden of transportation costs. Below are a few programs that can help guide you in the right direction:
Palliative care, or supportive care, consists of specialized support for people living with a serious health condition. Palliative care teams are made up of health care professionals who work together to address your concerns and help you understand your treatment options. You may get referrals to meet with various specialists who can help you manage pain, get better sleep, and maintain a healthy weight as you treat myeloma. Palliative care staff can also help with administrative hassles such as filling out complex medical forms.
Palliative care is focused on helping you feel your best, which can also make it easier to stay on myeloma treatment. In some studies, palliative care has even been shown to extend the lifespan of those living with serious illnesses. Palliative care can benefit caregivers, too.
Whether you’ve just been diagnosed with myeloma or have already undergone extensive treatments, it’s important to know about the different ways palliative care can help throughout your myeloma journey.
Read more about how palliative care can help during myeloma treatment.
MyMyelomaTeam is the social network for people with myeloma and their loved ones. On MyMyelomaTeam, more than 17,000 members come together to ask questions, give advice, and share their stories with others who understand life with myeloma.
Are you finding it challenging to stay on your myeloma treatment? Have you found ways to overcome obstacles around sticking with treatment? Share your experience in the comments below or start a conversation by posting on your Activities page.