How to advocate for RRMM treatment changes
Fact-checked by Living with relapsed/refractory multiple myeloma (RRMM) often means learning to live with the changes that come along with your condition — including changes in treatments.
Advocating for RRMM treatment changes doesn’t mean challenging your doctor’s expertise. Instead, it’s about embracing a shared decision-making approach with your RRMM doctor.
By advocating for yourself (or your loved one), you can help ensure your treatment still fits your situation, limits uncomfortable side effects, and aligns with your lifestyle needs.
Why RRMM treatment plans may need to change
Your RRMM treatment plan may change due to the nature of the disease. RRMM is known for evolving over time. Cancer cells can change and become resistant to certain medications, so a treatment that once controlled your disease may lose its effectiveness.
Or you may want to change your treatment plan due to specific treatment side effects. Issues such as fatigue, nerve pain, gastrointestinal problems, low blood counts, and increased infection risk can affect your quality of life and may influence decisions about adjusting your therapy.
Finally, treatment plans may also change as the clinical landscape evolves and new medications, clinical trials, and other therapies become available. These developments can create additional treatment options for you to consider over time.
Signs it may be time to speak up
Sometimes, the clearest signal that something needs to change in your treatment approach comes from how you feel day to day. Here’s what to look out for:
- Worsening or new symptoms: If you notice worsening symptoms, such as increased bone pain, extreme fatigue, frequent infections, or changes in your lab results, it may be time to speak to your doctor.
- Worsening treatment burden: If a treatment causes brain fog or fatigue that makes it hard to function, or if the treatment itself is too emotionally taxing on you, that matters too.
- You’re feeling worried or uncertain: Feeling anxious, overwhelmed, or confused about current or future treatment options or goals may mean you need to talk with your RRMM care team. It’s OK to ask questions and seek clarity.
Preparing for a productive RRMM doctor conversation
A little preparation can go a long way in enhancing your confidence and finding the answers you seek. Before your appointment, consider jotting down any new or worsening symptoms or side effects you’ve noticed, including when they started and how much they affect your quality of life.
Writing out questions beforehand can help keep the conversation focused. As you get an answer, tick the question off the list.
You might also consider recording the appointment or having a friend or family member take notes during the chat with your doctor. This can help you remember everything, since medical appointments can be a bit overwhelming.
It can also be useful to think about what matters most to you right now. Is it maintaining your energy? Is it reducing infections? Keep these goals in mind as you go into your appointment, and ask your doctor how changing treatments may allow you to feel better day to day.
How to discuss RRMM treatment changes
Clear, straightforward language can help your care team understand what you’re experiencing. Here are some examples of how to phrase your statements:
- “I’m concerned about how this treatment is affecting my daily life.”
- “I’m not sure our current treatment plan is working.”
- “Can you tell me about any trials that might be available?”
- “What are some other therapies available to me right now?”
When you openly discuss your symptoms, side effects, or lifestyle limitations, your doctor can better tailor a treatment plan to you.
What to do if you feel unheard
Not every appointment goes as smoothly as you may like. If you leave feeling uncertain or dismissed, you’re not alone. It may help to request clarification through a follow-up visit or a patient portal message.
If you don’t understand what your doctor is saying during an appointment, ask them to rephrase the information. It’s perfectly normal to ask for clarity.
You can also ask about how to get a second opinion. A second opinion doesn’t mean starting over or even abandoning your current provider. It can, however, offer reassurance, confirmation, or new and helpful perspectives. Your providers can also collaborate to find the best treatment plan for you.
Ultimately, your lived experience should guide the treatment journey. Advocating for RRMM treatment changes takes practice, patience, and trust, both in yourself and your care team. While clinicians bring medical expertise, you know your body better than anyone.
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.
