How to talk about RRMM
Fact-checked by The conversations you have with your family and friends about your diagnosis of relapsed/refractory multiple myeloma (RRMM) can help them support you in the ways you need.
RRMM is a type of myeloma that has returned (relapsed) after responding to initial treatments or is not responding (refractory) to the current treatment, whether it be chemotherapy, stem cell transplant, or specific medications.
After some initial success with treatment, it can be distressing for you and your loved ones to witness the disease progressing.
By deciding what information to share, picking the right time and setting, and learning how to talk about RRMM, you can build a foundation of understanding and support.
Why talking about RRMM matters
Talking about your RRMM can help you build a strong support system. These conversations can help ease the burden of RRMM’s unpredictable progression by:
- helping family and friends become allies who recognize your invisible struggles, like fatigue from anemia or bone pain
- sharing the emotional weight of relapses, so you don’t face uncertainty alone
- asking for practical support with cooking or driving when you’re fatigued
- setting clear boundaries of what types of conversations are helpful to you and what causes you anxiety
Being open about your illness and your needs with your family and friends can also be helpful to them by:
- allowing them to support your daily life in such ways as adapting meals or schedules around fatigue
- letting them know the different types of support you may need, like setting up a “food train”
- joining you at healthcare appointments to hear treatment updates directly from your oncologist or care team, and supporting you in your healthcare decisions
- helping track bloodwork or M protein levels between visits with your healthcare team
Deciding what and how much to share
Start with the right level of detail for each person’s readiness, to help keep talks hopeful and prevent anxiety.
You might start with one or two key people you trust most, then widen the circle as you feel more ready.
Gauge readiness by starting small. For example, you might share core facts like:
- RRMM means myeloma that returns after prior treatments like chemotherapy or stem cell transplants, and becomes resistant to treatments.
- Even with treatment, symptoms like bone pain or fatigue can worsen as plasma cells overgrow.
Use age-appropriate ways to explain:
- Children: Using simple analogies like “bad cells are crowding the good ones in my blood, but this can be fixed by medicine” can help keep the conversation from becoming scary.
- Teens: Tell them that relapses mean the cancer came back after treatment, but there may be other treatments that can help fight it.
- Adults: Go into more detail about RRMM progression and treatments that can help to reduce flares.
Share links to trustworthy RRMM resources, such as your clinic’s website, so your family and friends can read more on their own.
Choosing the right time and setting
The right time and setting can help make these conversations feel safe and focused for everyone involved.
- Pick quiet, low-stress moments, like a weekend dinner when no one’s feeling rushed, and try to reduce distractions.
- Take breaks when emotions overflow.
- Consider your energy levels, avoiding times when bone pain or fatigue make difficult conversations more taxing.
Tips for effective conversations
Practical steps can turn talks into supportive exchanges that last beyond the first chat.
- Start with your feelings first: “I’m scared about relapses but hopeful about new treatments” helps invite their reactions and builds connections.
- Use everyday analogies: “Relapses are like weeds regrowing after treatment” to explain plasma cell overgrowth without medical jargon.
- Listen more than speak: Acknowledge fears, such as “I know this worries you.”
- End with action: Assign small roles by saying, “Can you join my next bloodwork appointment?”
- Follow up: Check in after a week, asking “What questions do you still have?” to fill understanding gaps.
If you feel uncomfortable doing this on your own, consider family counseling with a mental health therapist, who can guide the conversation and help everyone process emotions together.
Rare Cancer News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.
