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Side effects, emotional stress, and costs associated with multiple 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 making treatment work for them. “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.”
Multiple myeloma is often treated with targeted therapy that inhibits specific cells in the immune system. Treatment options include:
As with any medication and medical procedure, these treatments can cause an array of side effects that may range from mildly inconvenient to severely uncomfortable and difficult to tolerate.
There are steps you can take to make your myeloma treatment easier. Finding the right support can help you get the treatment you need with less impact on your quality of life.
Discomfort from myeloma treatment side effects can be a significant challenge. 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 oncology expert about it. They may be able to recommend ways to manage it and feel better.
If you’re struggling with symptoms or side effects, ask your cancer care doctor or cancer center nurse about palliative care, a type of supportive care with 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.”
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.
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.”
Whatever financial challenges you face when paying for myeloma treatment, there are many places where you can find support.
Clinical studies (also called clinical trials) may also provide access to affordable treatment. Most clinical studies for myeloma compare new treatments to existing ones to see if they may be even more effective. Costs for clinical trials can vary, but they’re sometimes covered by the trial sponsors.
If you’re interested in participating in a clinical study for myeloma treatment, talk to your health care professional to find out if you are eligible.
Some MyMyelomaTeam members have expressed excitement about the possibilities of clinical trials. “I was asked if I would be interested in a clinical study for maintenance meds,” one explained. “I am interested in doing it.”
Your treatment plan will involve a lot of logistics and scheduling. You may 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.
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,” another member shared. “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.”
“I take so many medications, I have to keep a calendar,” said a third member. “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 pillboxes that organize doses by day and time and smartphone apps that remind you what to take and when.
Bring a notebook to doctors’ 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, family member, or caregiver to appointments and ask them to take notes for you. One MyMyelomaTeam member recommends this: “Yes, do take someone with you for that first appointment. It’s good to have someone to take notes, listen, and ask any questions.”
If you have problems finding transportation to medical appointments, there are resources that can help, including some recommended by the Leukemia & Lymphoma Society. Plan ahead and be sure you are making transportation arrangements well in advance of your treatment visits.
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. 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.”
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 get the treatment you need. 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.
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.
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 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.
Some MyMyelomaTeam members have had success with medication for mental health, too. One explained, “There is anxiety medication. I felt I had to fight for my Xanax, but it has helped immensely.”
If you want to try anxiety medication, your doctor can help you find one that will work for you.
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 their 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 multiple myeloma 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.”
On MyMyelomaTeam, the social network for people with myeloma and their loved ones, more than 22,000 members come together to ask questions, give advice, and share their stories with others who understand life with myeloma.
What tips have helped you with myeloma treatment? Can you share any ways to stay organized, feel better, or find support? Share in the comments below, or start a conversation by posting on your Activities page.
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At what point would they put you on hospice? What kind of symptoms would you have to have
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