Track your multiple myeloma journey
Being open and transparent with your care team makes it easier to find solutions that are best suited for you. Your healthcare team has the medical knowledge, but you are the expert on how your body is feeling—so be sure to let them know. The more details you provide your doctor, the better you'll be able to develop a plan and progress with treatment.
It takes preparation to succeed. Here are some suggestions for making sure you have a multiple myeloma (MM) plan you can stick to:
Schedule routine healthcare visits and make them a priority, whether you feel sick or not
Prepare for your visit by keeping track of your medical history and the medicines you currently take
Get regular bloodwork to look for increased calcium and protein levels and any signs of anemia
Make a health plan with your doctor to map out your doctor visits, your medications, and logistics for you and your support system
Keep a record of symptoms, your medicine schedule and any missed doses, how you’re feeling day to day, and the goals you’ve reached
Schedule your follow-up appointment before you leave the doctor’s office, and set a time to talk about lab results over the phone
Your MM treatment journey
Click through the different stages of the multiple myeloma (MM) journey to discover the general progression for MM. This information can help you in shared decision-making with your doctor, navigate your treatment decisions, and decide what is best for you.
The stage before a doctor gives you an official multiple myeloma diagnosis. You may or may not be feeling signs and symptoms.
Your care team
Primary care physician, nurse practitioner, physician’s assistant
Emergency or urgent care if you have a serious health event related to multiple myeloma
Goal of care
Diagnose the root cause of symptoms and identify how multiple myeloma is affecting your body
Common feelings
- Frustrated
- Anxious
- Overwhelmed
- Eager
Your care experience may include:
- Blood tests may be ordered to help indicate if further tests are needed
- If your blood test results are too low or too high, it could require additional testing. Your doctor should refer you to a hematologist-oncologist to confirm if it is multiple myeloma
Involving your care partner
- Let a close family member or friend know if anything is out of the ordinary and how they can support you
- If you need emotional support, talking with someone can help. This can be family, friends, a church member, or a therapist
Helpful tips
- Get routine health checkups and bloodwork to see if test results are in normal ranges
- Know the risk factors for MM
- If you have abnormal blood test results, ask your primary care doctor for a referral to a hematologist-oncologist
This condition might lead to MM and happens when low levels of M-protein are found in your blood.
Your care team
Hematologist-oncologist, nurse practitioner, or physician assistant
Goal of care
Monitor the condition over time to detect early signs and symptoms of it progressing to multiple myeloma
Common feelings
- Nervousness
- Fear
- Uncertainty
Your care experience may include:
- Regular checkups to monitor your blood test results as often as every 3-6 months. Your doctor may also ask for urine tests and image or bone scans if you have bone pain
Involving your care partner
- It’s important to keep your care partner up to date on your condition
- If your tests indicate disease progression, consider inviting them to support you during your next appointment
Helpful Tips
- Review your blood test results with your doctor, and if anything is outside of the normal range, be sure to ask your hematologist-oncologist
- See normal blood test ranges here
This is a form of multiple myeloma that is precancerous but isn’t causing any symptoms.
Your care team
Hematologist-oncologist, nurse practitioner, or physician assistant
Oncology social worker or patient navigator
Goal of care
Close surveillance for signs of progression to active multiple myeloma
Common feelings
- Fear
- Skepticism
- Vulnerability
Your care experience may include:
- Low-risk patients may not need treatment right away. Your hematologist-oncologist will order routine blood and image tests to monitor for signs of active MM
- High-risk patients may be put on medication to delay progression
- Your doctor may perform a bone marrow biopsy to understand the aggressiveness or growth of MM
Involving your care partner
- It’s important to keep your care partner up to date on your condition
- If your tests indicate disease progression, consider inviting them to support you during your next appointment
- If you’re initiating treatment, make sure they understand the side effects as well so they can help you manage them
Helpful Tips
- Know your plasma cell level and blood protein markers so you know whether you fall into low or high risk of MM
- Do your own research, and be prepared to ask your doctor about MM treatments so you can discuss if they are appropriate for you
In this stage of MM, a tumor has formed, or a large number of MM cancer cells have started to spread to other parts of the body and need to be treated.
Your care team
Hematologist-oncologist, nurse practitioner, or physician assistant
Oncology social worker or patient navigator
Goal of care
Bring MM under control and down to levels that are undetectable in tests, keep it from spreading, and prevent myeloma cells from growing back
Common feelings
- Unprepared
- Isolated
- Shame
Your care experience may include:
- Beyond routine blood, urine, and image testing, your doctor might recommend genetic testing to better understand your MM risk. Genetic testing can help to improve treatment options, understand MM tumors, and predict the timing and severity of your MM progression
- Your doctor will recommend beginning treatment to get your MM under control. There are a lot of treatment options to consider. Treatment guidelines recommend starting with a triplet regimen, which means 3 types of medicine—2 different medicine classes and a steroid
Involving your care partner
- You’ve been diagnosed with a treatable but incurable rare blood cancer, so if you haven’t yet discussed MM with close friends and family, it will be important to bring them up to speed
- People have lived many productive years with MM, so it will be necessary to discuss where you need support, clarify your personal boundaries to remain independent, and identify how they can consistently be there for you throughout your journey
Helpful Tips
- Express your treatment needs to your doctor
- Discuss all available medicines, and weigh the pros and cons of treatment for each medicine with your doctor
- Understand the possible side effects you might experience, and know what to expect while on treatment
In this procedure, healthy cells are infused into your bone marrow. These cells help boost new bone marrow production and decrease multiple myeloma cell activity.
Your care team
Hematologist-oncologist, nurse practitioner, or physician assistant
Stem cell transplant center staff
Oncology social worker or patient navigator
Goal of care
Bring MM under control and down to levels that are undetectable in tests, keep it from spreading, and prevent myeloma cells from growing back
Common feelings
- Uncertainty
- Drained
- Depressed
Your care experience may include:
- Your doctor will first evaluate and determine if you meet the stem cell transplant criteria; you must be in fairly good health, have no serious liver or heart disease, and still be able to do most daily activities on your own
- There are 3 kinds of transplants. In an autologous transplant, you use your own stem cells; an allogeneic transplant is from a matching donor; and a syngeneic transplant uses stem cells from an identical twin
- If you use your own stem cells, they will first need to be collected in a process called “harvesting,” where a machine will filter your stem cells from your blood
- To prepare for transplant, you’ll first receive a high dose of chemotherapy to kill as many MM cells as possible
- After chemotherapy, the healthy stem cells will be put into your body through intravenous (IV) infusion. You may need to spend up to 2-4 weeks or more in the hospital to be monitored and protected from infections and bleeding. This time allows for the infused stem cells to replace the old ones so you have new healthy bone marrow
Involving your care partner
- Your care partner can play a big role in helping to provide assistance and support during this part in your MM journey
- As you recover from SCT, care partners can help provide updates to family, friends, and your employer, and they can also assist in carrying out daily tasks in your home life
- Working with your care team and granting your care partner access to your medical records will allow for them to help follow up on your care
Helpful Tips
- Talk to your doctor about a stem cell transplant, particularly if you are a high-risk MM patient
- If eligible, discuss if you may be in need of 1 or 2 transplants. Your doctor may recommend a second transplant between 3 and 6 months from the first. It can be more helpful than a single transplant if you are high risk but can cause more side effects
- Make care plans with your employer and care partner for the time you will need to take to recover from the procedure. You can explore short-term disability or medical leave to help offset financial implications from missed work
In this stage of MM, there are so few myeloma cells that they can no longer be detected by blood tests.
Your care team
Hematologist-oncologist, nurse practitioner, or physician assistant
Goal of care
Keep MM under control so cancer cells don’t grow back
Common feelings
- Hopeful
- Grateful
- Relieved
- Worried
Your care experience may include:
- Your doctor may recommend you continue taking your MM medicine to help target MM cancer cells
- Routine blood and urine tests will still be needed to monitor your M-protein levels
- Your doctor may order image tests to assess any bone damage
- You may see the doctor every 2-3 months at first, and as time passes, you may see your doctor up to every 6 months. Your doctor will help determine what is most appropriate
Involving your care partner
- Keep your care partner up to date on your test results or if you are feeling any changes in your body, signs, or symptoms. They will want to celebrate the good news with you or spring into action to support you, should your MM relapse
Helpful Tips
- Maintain consistent follow-ups as your doctor recommends. In the event of an MM relapse, you will be able to catch it sooner
- If you can tolerate your prescribed medicines, continue to take your maintenance MM medications that will continue to fight MM cells over time. Be sure to bring up any side effects and discuss them with your doctor during your routine visits
- Monitor any signs and symptoms over time, and let your doctor know if you are experiencing any; they can be signs your MM is relapsing
You’ve reached this stage if MM comes back after remission and the cancer builds up to a point where you may experience symptoms again.
Your care team
Hematologist-oncologist, nurse practitioner, or physician assistant
Goal of care
Bring MM under control and down to levels that are undetectable in tests, keep it from spreading, and prevent myeloma cells from growing back
Common feelings
- Betrayal
- Terrified
- Burden
Your care experience may include:
- Your doctor may recommend a number of treatment options for you to consider. If you are lower risk, they may suggest a stem cell transplant or going back onto a treatment you have already been on
- If test results reveal your MM is considered high risk, your doctor may recommend a new combination of medicines to take
- Your doctor may also do genetic testing to help determine which treatments may work best to fight your MM
Involving your care partner
- Your care partner may be emotionally impacted by the news of your MM relapse as well. Together, you can provide each other with the emotional support needed to process the news
- Your care partner can be an excellent resource to help you research your next treatment options and prepare for your next doctor’s visit
- Care partners can also assist you in building out your care plan and care team so that you have the necessary support you need
Helpful Tips
- Strides are made every day to find new medicines to treat MM, so discussing available clinical trials with your doctor at this stage may give you access to new treatments
- If you’ve been in remission for while, brush up on your MM knowledge so you’re prepared to discuss your treatment options with your doctor
- Research newer treatments, like CAR-T cell therapy, and discuss them with your doctor. If you and your doctor decide to explore this treatment but they cannot administer it, ask for a referral to a doctor who can, and ask about how they can co-manage your care so your routine doctor can stay informed
- CARVYKTI® (ciltacabtagene autoleucel)/CAR-T cell therapy can only be administered at a certified treatment center
This type of treatment boosts or changes the immune system so it can find and attack cancer cells.
Your care team
Hematologist-oncologist, nurse practitioner, or physician assistant Academic center staff Oncology social worker or patient navigator
Goal of care
Put MM into remission or prevent it from progressing
Common feelings
- Determined
- Hopeful
- Concerned
Your care experience may include:
- Your doctor may recommend a CAR-T cell therapy, a type of immunotherapy. Before beginning treatment, you will receive a pre-treatment evaluation or workup to better understand the state of your MM
- To receive this treatment, you will need to go to an academic center equipped to take a sample of your white blood cells so they can be programmed/changed to fight your MM. It generally takes 4-5 weeks to modify your cell sample
- Once your cells are ready, you will receive a pre-infusion treatment over the course of 3 days and then the infusion that lasts up to 60 minutes
- Because CAR-T cell therapy affects your immune system, you’ll need to stay close by the academic hospital as you’re monitored for side effects. Your doctor will monitor you closely for the first 10 days and may recommend you stay close to the academic center for the first 4 weeks for ongoing monitoring
- Although CAR-T cell therapy is a one-time infusion, your doctor may recommend you remain on a maintenance therapy to manage MM signs and symptoms
- You may have follow-up appointments every few weeks or months with the academic center or your local hematologist-oncologist
Involving your care partner
- A care partner during this process is required. They can help monitor you after treatment, provide daily support and care as you are limited in mobility, and provide emotional support
- Providing support during this treatment is a lot for one care partner, so consider a care team that can help share in supporting you
Helpful Tips
- You will have a lot of new care team members and facilities to visit during the course of this treatment. Remember to ask questions and self-advocate so you understand care and treatment details
- CAR-T cell therapy can affect your daily routine, home life, work, and finances, so it’s important to make arrangements for these areas of your life. A social worker is a great resource to find additional support needed
- If you have to be away from your family, technology can be a great tool to keep you feeling close while you are getting the treatment you need
This stage of MM is when your MM doesn’t respond to the first 2 medicines and you need to switch to other treatments.
Your care team
Hematologist-oncologist, nurse practitioner, or physician assistant Academic center staff Oncology social worker or patient navigator
Goal of care
Keep MM under control so you can live longer with the disease
Common feelings
- Distress
- Isolation
- Empowerment
Your care experience may include:
- Routine testing will help indicate how your MM is progressing. If you are not responding well to one medicine, your doctor may recommend you try another or a combination of other medicines
- Depending on the type of medicine you are taking, you may need to seek MM care at an academic center to initiate some medicines like bispecifics
- If you and your doctor decide a bispecific is right for you, to ensure your safety, it may require you to be hospitalized and monitored for the first 48 hours as part of the initial “step-up” dosing in the event you experience a side effect
Involving your care partner
- Your care partner should be a fairly constant presence in your MM journey by now
- It’s important to re-evaluate your care needs and where your care partner can best lend support as they change over time
- As your MM progresses, they may need to take on a greater role, or you may want to consider multiple care partners so you always have support when you need it
Helpful Tips
- Keep transparent lines of communication open with your care team. Keep them updated on the details of how you are feeling and responding to your MM treatments
- If switching MM medicines, make sure to discuss the pros, cons, side effects, and anticipated results—your doctor should prescribe medicines that work differently to treat MM or can prescribe previous medicines that have worked if it’s been more than 6 months since you’ve taken them
- If you need to get treatment at a different location, discuss a co-management plan your doctor can put in place with the additional care team members
At this stage, MM does not respond to available treatments.
Your care team
Hematologist-oncologist, nurse practitioner, or physician assistant
Home health aid
Palliative care team
Goal of care
Manage MM symptoms to help you live a better quality life
Common feelings
- Grief
- Anger
- Loss of control
- Appreciation
Your care experience may include:
- Continue to see your doctor as recommended
- Don’t be afraid to ask if there are any new MM medicines in development and if you might qualify to participate in a clinical trial
- As your MM progresses, you may find that you need additional emotional or spiritual counseling
- Palliative care may become necessary as you get closer to the end of your MM journey. The goal of this care is to keep you comfortable and manage your symptoms, as well as provide support to your loved ones helping with your care
Involving your care partner
- Keep your care partner informed about how you are feeling so they can better help to coordinate your care. No need or ask is too small as you are cared for with honor and dignity
- This will be a tough time for everyone as you come to terms with your MM. Your care partner can help you prepare your final wishes in advance
Helpful Tips
- Spend as much quality time together as you can, and take this time to pass down family history and stories future generations can carry with them
- Consider a living trust or will, and pre-plan your funeral arrangements so your loved ones can take comfort that they are executing your final wishes as you want them done
Another part of advocating for yourself is having a conversation with your provider and being a part of that discussion about what treatment options will work best for you and your lifestyle.
— Ellen Dillard
nurse practitioner
In consideration of the time spent participating in this activity, Ellen Dillard was paid an honorarium by Johnson & Johnson.