Amyloidosis Frequently Asked Questions

Amyloidosis Frequently Asked Questions

Patients and caregivers will have lots of queries and doubts regarding Amyloidosis and its treatment. People should openly talk about Amyloidosis and ask any doubt or questions about the disease diagnosis, its gravity, treatment and post-care with their physician or the health care team.

Open communication with the doctor or health care team helps patients make informed decisions or choices regarding their treatments and healthcare. Below are a set of questions you can ask your health care team, covering almost all aspects of amyloidosis disease diagnosis, treatment, side effects, overall care and survivorship. You may also address any additional queries or doubts you have in mind regarding the disease, apart from the ones listed below. Patients are advised to take a family member or friend with them during appointments as a support and to help record everything that the health care team or doctor prescribes. 

Questions regarding Amyloidosis diagnosis to ask the health care team: 

  • What is the exact diagnosis? Could you explain it in detail?
  • Could you explain in detail my lab test results or pathology reports?
  • Which body parts have been affected by the disease?
  • What is amyloidosis disease? Does it have different types, and what is my case?
  • How does this amyloidosis type progress? Can the condition be treated and cured?
  • What is the stage of the disease condition?

Questions regarding choosing the Amyloidosis treatment plan:

  • What are the available treatment options to treat this disease condition?
  • Will the treatment plan focus on treating and managing the signs and symptoms of the disease?
  • Can symptoms be controlled with medications alone, or will it require any surgical procedures?
  • Am I eligible to participate in clinical trials?
  • What are all clinical trials available for my disease condition?
  • How do I find the apt clinical trials?
  • Where are these clinical trials located, and how can I know more about them?
  • What treatment plan would you recommend for my condition and why?
  • Will the treatment cause side effects? If so, what all side effects should I expect?
  • What is the aim of each treatment? Will it eliminate the disease condition, make me feel better, or both?
  • Who will all be part of the health care team? What is the function of each member?
  • Who will be leading my treatment procedures?

Questions to ask regarding managing and relieving side effects of Amyloidosis treatments:

  • What are the possible long term and short-term side effects of each treatment?
  • How to deal with these side effects? Will the treatment include managing and treating them? If so, how?
  • Will the treatment plan affect my day-to-day activities? If so, in what way? Will I be able to exercise, work and perform all my regular activities? 
  • Will this treatment affect my sex life? If so, in what way and for how long?
  • Can this treatment affect my ability to conceive and become pregnant? Should I consult a fertility specialist before the treatment starts if that is the case? 
  • How can I manage the costs of treatment and care? Who can help me in doing so?
  • What are all support services available for my family and me?
  • Whom or where should I call? If I have any queries or doubts?

Questions to ask regarding follow-up care of Amyloidosis:

  • What tests and scans will be required during follow-up care to screen my health and disease condition?
  • How often will these tests and scans be required?
  • What are the symptoms and signs I should watch for post-treatment?
  • What are the late or long-term side effects of the treatment I underwent? 
  • Can I get a detailed treatment summary and follow-up care plan for keeping in my records?
  • Who will all be involved in my follow-up care, and who will lead it?
  • What are the available care options and services for my family and me?