Updated on June 07, 2021 Medically
reviewed by Todd Gersten, M.D.vArticle 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.
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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:
·
Housing and travel assistance from
the International Myeloma Foundation
·
Susan Lang Pay-It-Forward Patient
Travel Assistance Program
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:
·
“We are going to see a bone marrow
specialist. Any questions we should ask?"
·
“While in remission, is treatment
needed?”
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“If you're in remission for the
second time, is it necessary to continue with the cancer drugs?”
Here are some
conversation threads on MyMyeloma Team about managing treatment costs:
·
“I’m 65 and looking for info on the
cost of Revlimid.”
·
“Do I need to improve my medical
coverage for myeloma care?”
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.
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