Questions to ask: AL amyloidosis
Diagnosis
- Has the amyloid been typed, and are you sure it is AL?
- Which organs are affected?
- What is my stage, and what do my heart blood tests show?
- How are my kidneys doing, and how much protein is in my urine?
- Do I also have multiple myeloma?
- What did the bone marrow gene tests show? Do I have t(11;14)?
- Should I be seen at a center that treats many people with amyloidosis?
- Do I need to see a heart doctor and a kidney doctor too?
- What is the goal of my treatment?
- Is there a clinical trial I should think about now?
Before
- Will I get Dara-CyBorD, and how long will treatment last?
- Am I a candidate for a stem cell transplant?
- How often will I come in for treatment?
- Should my starting doses be lower because of my heart?
- Which of my current medicines should I stop or change?
- How much salt and fluid should I have each day?
- What medicines will I take to prevent infections?
- Who should I call if I feel faint or my weight goes up?
- Can I keep working during treatment?
During
- Are my light chains dropping? What kind of response do I have?
- Are my heart and kidney tests getting better?
- Which side effects should I call about right away?
- Should my water pill dose change?
- How can I manage dizziness when I stand up?
- What can I do about numbness or tingling?
- What should I eat to keep my strength up?
- If my response is not deep enough, what will we do next?
- Who do I call after hours?
After
- How often will I have blood, heart, and kidney tests?
- How long might it take for my organs to recover?
- What signs could mean the amyloidosis is coming back?
- Can I start cardiac rehab or an exercise program?
- Which vaccines do I need, especially after a transplant?
- If it comes back, what are my options?
- Are there support groups for me and my family?
- What can I do to stay as healthy as possible?
Last updated: 2026-10-27. Medically reviewed by Veli Bakalov, MD, medical oncologist (October 2026). General education from Step by Step, the patient portal of HemeOncBuddy.