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The Importance of Staying on Treatment for Multiple Myeloma

Updated on June 07, 2021
Medically reviewed by
Todd Gersten, M.D.
Article written by
Amy Isler, RN

  • Even when you feel better, it’s important to keep taking your myeloma treatment to maintain remission and quality of life.
  • If you encounter obstacles to staying on treatment, there are resources to help you overcome those barriers.
  • Be open with your doctor about your priorities and any challenges you face.
  • Partner with your doctor to learn more about your condition and decide on a treatment plan tailored to meet your needs.

For people diagnosed with multiple myeloma, sticking to a treatment plan is critical to achieving and maintaining remission. 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 multiple myeloma treatment. By partnering with your cancer care team — which may include your oncologist, primary care provider, and 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.

What Is Maintenance Treatment for Multiple Myeloma?

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 Revlimid (Lenalidomide), Thalomid (Thalidomide), and Pomalyst (Pomalidomide). Injected drugs may be given via an intravenous (IV) infusion or a subcutaneous (under the skin) injection. Injected drugs used for myeloma maintenance therapy may include Darzalex Faspro (Daratumumab and Hyaluronidase), which has also recently been approved by the U.S. Food and Drug Administration (FDA) to administer via subcutaneous injection.

Since multiple myeloma is a chronic disease, sticking to your treatment plan over the course of your life is the best way to maintain 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.

Take the quiz: How much do you know about myeloma treatments?

Why Is Myeloma Treatment Adherence Important?

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 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 of symptoms, 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.

Barriers To Staying on Myeloma Treatment

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. The Leukemia & Lymphoma Society describes some of the most common barriers to treatment among people with multiple myeloma:

  • Financial implications — Cost of medicine or lack of health insurance can lead to skipping doses to make oral medicine last longer.
  • Overwhelming myeloma symptoms — People who experience significant pain or exhaustion are less likely to comply with their treatment plan.
  • Treatment complexity — Multiple medication regimens can be confusing and overwhelming.
  • Lack of support at home — Lack of supportive care from friends and family can impact a medication routine.
  • Breakdown in communication with doctor — People who do not understand the treatment plan will have a harder time following it.
  • Side effects — Some people may skip doses or quit taking medication completely if the side effects affect their quality of life.
  • Skipping doses — If people start to feel better, they may be inclined to skip doses or stop treatment without consulting with their treatment team.
  • Overuse of medication — Some people may overuse their prescribed medication, thinking more is better.

Strategies To Improve Myeloma Treatment Adherence

Education and miscommunication play big roles in the majority of obstacles inhibiting people from adhering to their treatment plans. There are several ways to eliminate these barriers.

Educate Yourself

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.

Ask Your Health Care Providers Lots of Questions

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’s visits with you to assist with remembering 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.

Get Help With Treatment Costs

If the cost of myeloma treatment is a challenge, there are resources that can help.

Talk With Your Doctor

Sharing financial information can be difficult for many. Be clear with your doctor about your financial situation and ask for affordable options to help you achieve the best outcome.

Seek Financial Assistance

Many programs are available to assist multiple myeloma patients with health care and medication costs. Look into programs with the Leukemia & Lymphoma Society, the Multiple Myeloma Research Foundation, and the HealthWell Foundation.

Lower Your Prescription Drug Costs

The cost of oral medication and treatment drugs can be expensive, but there are several copay assistance programs available to help lower your out-of-pocket expenses. Learn more about the programs at CancerCare, International Myeloma Foundation, and Patient Advocate Foundation.

Get Organized

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.

Set Reminders

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.

Plan Transportation

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:

Getting the Most Benefit From Myeloma Treatment

It can be tough at times to stick with myeloma treatment, but there are many resources available to help you stay on a path to remission, better quality of life, and productivity.

You are not alone as you treat multiple myeloma. By joining MyMyelomaTeam, you gain a community of more than 8,600 members who share encouragement and reassurance. Members offer support and tips to overcome barriers and stay on myeloma treatment.

Here are some question-and-answer threads on MyMyelomaTeam about treatment plans:

Here are some conversation threads on MyMyeloma Team about managing treatment costs:

Have you found it difficult to stay on myeloma treatment? What barriers have you encountered, and how did you overcome them? Share your experiences below in the comments or post on MyMyelomaTeam. Your story could help someone facing the same challenges.

References
  1. Assessing the Effect of Adherence on Patient-reported Outcomes and Out of Pocket Costs Among Patients with Multiple Myeloma — Clinical Lymphoma Myeloma and Leukemia
  2. We have Blazed new Trails in Pursuit of a Cure — Multiple Myeloma Research Foundation
  3. Stem cell Transplants — Multiple Myeloma Foundation
  4. Drug Therapies for Multiple Myeloma — Multiple Myeloma Foundation
  5. What is Revlimid? — Multiple Myeloma Foundation
  6. What is Darzalex/Darzalex Faspro? — Multiple Myeloma Foundation
  7. FDA Approves Darzalex Faspro Formulation for Multiple Myeloma — Clinical Oncology News
  8. Exploring behaviors, treatment beliefs, and barriers to oral chemotherapy adherence among adult leukemia patients in a rural outpatient setting — BMC Research Notes
  9. Myeloma Oral Treatment Adherence Facts — Leukemia & Lymphoma Society
  10. Determinants of Satisfactory Patient Communication and Shared Decision Making in Patients with Multiple Myeloma — Psycho-Oncology
  11. Plasma Cell Neoplasms (Including Multiple Myeloma) — National Cancer Institute
  12. Multiple Myeloma — American Cancer Society
  13. Myeloma — Leukemia & Lymphoma Society
  14. Managing the Cost of Cancer Treatment — Cancer Support Community
  15. Financial Support — Leukemia & Lymphoma Society
  16. Financial Assistance — Multiple Myeloma Research Foundation
  17. Multiple Myeloma — Medicare Access — HealthWell Foundation
  18. New Copay Assistance Funds Available for Multiple Myeloma Patients — CancerCare
  19. Drug Reimbursement Information and Assistance — International Myeloma Foundation
  20. Multiple Myeloma Copay Relief Program Fund Notices — Patient Advocate Foundation
  21. New Program for Multiple Myeloma Patients Offers Help with Transportation Costs — CancerCare
  22. Housing and Travel Assistance — International Myeloma Foundation
  23. Susan Lang Pay-It-Forward Patient Travel Assistance Program — Leukemia & Lymphoma Society
Todd Gersten, M.D. is a hematologist-oncologist at the Florida Cancer Specialists & Research Institute in Wellington, Florida. Review provided by VeriMed Healthcare Network. Learn more about him here.
Amy Isler, RN is a registered nurse with over six years of experience as a credentialed school nurse. Learn more about her here.

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