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Problems With Staying on Myeloma Treatment? Find Support

Posted on August 25, 2022
Medically reviewed by
Todd Gersten, M.D.
Article written by
Joan Grossman

  • If you find challenges that make it hard to stay on your treatment plan for multiple myeloma, there are resources to help.
  • Find resources and tips to overcome problems relating to side effects, treatment costs, and the scheduling and logistics of care.

Side effects, emotional stress, and costs associated with myeloma treatment can all be challenging, but it’s vital to stick to your treatment plan. MyMyelomaTeam members frequently discuss the challenges and importance of sticking with treatment. “Your treatment routine is important to maintain your well-being,” wrote one member, “And even more important during times of stress when your condition can be exacerbated.”

There are steps you can take to make it easier to stick to your myeloma treatment. Finding the right support can help you stay on the treatment plan you need with less impact on your quality of life.

Managing Side Effects

Multiple myeloma is often treated with targeted therapy that inhibits specific cells in the immune system. Treatment options include chemotherapy, radiation therapy, immunomodulators (such as thalidomide, lenalidomide, and pomalidomide), immunotherapy (such as monoclonal antibodies), and bone marrow transplant. Like any medication or medical procedure, these treatments can cause an array of side effects that may range from mildly inconvenient to severely uncomfortable and difficult to tolerate.

Be Open With Your Doctor

Discomfort from myeloma treatment side effects can be a significant challenge and discourage people from sticking with treatment. In most cases, side effects are temporary and may subside as you adjust to treatment or when treatment stops. Talk to your doctor in detail about side effects before you start a new treatment so you have a realistic idea of what to expect and how to best manage any that arise. If you begin experiencing a troublesome side effect while taking a myeloma treatment, be open with your doctor about it. They may be able to recommend ways to manage it and feel better.

Learn About Palliative Care

If you are struggling with symptoms or side effects, ask your doctor about palliative care, a type of supportive care and services specifically designed to reduce discomfort. Palliative care does not treat the cancer itself but can coincide with cancer treatment to help manage your physical, emotional, and social well-being. People with serious illnesses such as myeloma are usually eligible for palliative care once they have a diagnosis.

“They offer pain management and counseling,” said one MyMyelomaTeam member receiving palliative care. “I was scared at first, as I thought palliative care was similar to hospice, but they’ve been really supportive.”

Get Tips From MyMyelomaTeam Members

You may also find MyMyelomaTeam members taking the same treatment who have tips for what’s worked to help them manage side effects and stick with therapy. “Side effects are kicking my butt. Anyone have any advice?” asked one member taking a particular drug for myeloma. “I’ve been on it since 2017,” another responded. “Exercise and eating right are the only things that help. The good news is that it’s worked well for my myeloma.”

Another member responding to a discussion on the side effects of a myeloma medication recommended, “Taking it in the evening helps.” Getting pointers from people who’ve been in your shoes can make a real difference.

Resources for Health Insurance and Costs

Managing health insurance claims and other costs associated with myeloma can be confusing and frustrating. “Straightening out insurance can give you nightmares,” a MyMyelomaTeam member wrote.

Problems with health insurance or other costs don’t necessarily have to interrupt your treatment. Reach out to your health care team if you are having trouble paying for your myeloma care. “I finally got a grant that covers my copay, after paying high copays for three years,” a member wrote. “My oncologist was instrumental in obtaining that.”

  • The Patient Advocate Foundation can help you find financial support you may be eligible for and help with health insurance claims.
  • This Cancer Insurance Checklist can help you be sure you understand the coverage you have with your health insurance policy through the Affordable Care Act.
  • The companies that manufacture myeloma medications often have copay assistance programs. They may also help you work with your insurance provider to ensure coverage.
  • There are programs that can help uninsured people get access to health insurance and other support.

Whatever financial challenges you face when paying for myeloma treatment, there are many places where you can find support.

Consider a Clinical Study

Clinical studies may also provide access to affordable treatment. Most clinical studies for myeloma compare new treatments to existing treatments to see if they may be even more effective. Costs for clinical trials can vary, but costs are sometimes covered by the trial sponsors. If you’re interested in participating in a clinical study for myeloma treatment, talk to your doctor to find out if you are eligible.

Managing the Logistics of Care

Sticking to a treatment plan involves a lot of logistics and scheduling. You have to remember to take medication at home, keep appointments for infusions, and stay on top of checkups, blood tests, and follow-up visits. “It’s a crazy schedule when you’re working full time and getting weekly infusions. Keep fighting, warriors!” a MyMyelomaTeam member said.

Myeloma treatments only work if you take them, and there are many ways to help make sure you stay on track with doses.

Find a Way to Organize That Works for You

Members often discuss how they keep organized when it comes to myeloma care. “I just bought two great planners,” one wrote. “It’s been hard to get organized since I was diagnosed in 2018. Finally, I think I found something that works. One is called CanPlan, which is a daily organizer planner, and the other is a planner for my family,” wrote one member.

“I take so many medications, I have to keep a calendar,” another member said. “I still have to refer to it every day. I have other complications, so keeping everything straight can be a problem, but I have learned how to organize everything pretty well.”

Other options include pill boxes that organize doses by day and time and smartphone apps that remind you what to take and when.

Take Notes at Appointments

Bring a notebook to doctor’s appointments to write down anything that may affect your treatment plan. You can also use your notebook to write down questions before appointments so that you come prepared to discuss concerns about symptoms, side effects, treatment options, or access to care. If it works better for you, use a smartphone or tablet to record the discussion (with your doctor’s permission). You can also take notes in a smartphone app for later reference.

If possible, take a friend or family member to appointments and ask them to take notes for you.

Access to Transportation

If you have problems finding transportation to medical appointments, there are resources that can help. Plan ahead and be sure you are making transportation arrangements well in advance of your treatment visits.

Self-Care and a Positive Attitude

Self-care sometimes starts with a hopeful attitude. “A positive attitude is the most important thing!” said a MyMyelomaTeam member. Another member wrote, “I think a positive attitude helps your body heal, and it’s good for you mentally,” she wrote. “The way I look at it, you can choose to be positive or have a negative attitude, which will just drag you down. So I choose to be positive.”

Talk About Your Needs

Sometimes, you may need to ask for help and support from family members or friends. People who are close to you may need guidance in giving you the support you need to feel your best and stick with your treatment plan. Let loved ones and the people closest to you know how you feel and what kind of help you may need, whether it is emotional support or help with daily tasks. Everyone’s experience with myeloma is unique.

Don’t Feel Guilty

For some people with myeloma, the first step toward self-care is letting others know they may not be available as often. “Getting organized first requires cutting back on activities, especially if one has been very active. I at first felt guilty doing less. However, this myeloma treatment stuff is going to need all of your mind and body,” wrote a MyMyelomaTeam member.

Don’t Overlook Your Mental Health

A myeloma diagnosis and treatment can trigger stress, anxiety, and depression. Sometimes, emotional distress may be a side effect of treatment or medication, such as dexamethasone. Mental health is an essential component of your overall care.

Left untreated, mental health problems can interfere with your daily life, personal relationships, and your physical well-being. Studies show that stress hormones can harm the immune system and may even reawaken cancer cells that have been in remission.

Talk to your doctor if you need support managing stress. You can get a referral for mental health counseling. You can also explore resources for holistic stress management such as breathing exercises, yoga, mindfulness training, and meditation.

Connect With a Support Group

In-person support groups or online options like MyMyelomaTeam can help build a sense of community if you’re feeling isolated. One member described how MyMyelomaTeam had helped lift her spirits. “The people here show the best side of humanity. Always willing to provide support, answer questions, do whatever they can to help each other despite themselves dealing with a serious condition.”

Another member wrote, “I am glad to share my story with others. This disease is not so common. I knew no one with MM when I was diagnosed. I really need to hear stories and share experiences. Of course, there are differences but it helps me. I realize I am not the only one.”

Talk With Others Who Understand

On MyMyelomaTeam, the social network for people with myeloma and their loved ones, more than 168,000 members come together to ask questions, give advice, and share their stories with others who understand life with myeloma.

Has it been challenging for you to stay on your myeloma treatment plan? Do you have any tips for overcoming these obstacles? Share in the comments below, or start a conversation by posting on your Activities page.

All updates must be accompanied by text or a picture.
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.
Joan Grossman is a freelance writer, filmmaker, and consultant based in Brooklyn, NY. Learn more about her here.

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