Infopack for relapsed and/or refractory myeloma patients

This Infopack is for myeloma patients who have been told they have relapsed or are refractory to treatment. It may be useful to those who are newly diagnosed and wish to know what to expect, and to the family and friends of patients too. It explains reasons why myeloma may relapse, how the relapse will be recognised and the treatments available. It also explains why myeloma can become refractory to treatments, and what options may be available for these patients. This Infopack covers key questions about relapsed and/or refractory myeloma, such as:

  • What is myeloma?
  • What is relapsed myeloma?
  • How will I know if I am relapsing?
  • When will I relapse?
  • What are my treatment options at relapse?
  • What is refractory myeloma?
  • How can I find support?
  • What are my options when I have multiple relapses?
  • Is there treatment to prolong remission?
  • What research is being done to improve prognosis?

Key points you can read about in this Infopack include:

  • Myeloma is a blood cancer that arises from the plasma cells, which are a type of cell made in the bone marrow
  • Myeloma is a relapsed and remitting cancer, which makes it different to many types of cancer
  • Relapse is when myeloma returns or becomes more active, after a period of remission or plateau
  • Regular monitoring and tests from your healthcare team can help to identify is you are relapsing
  • You cannot control when you will relapse, how long your remission will last, or how often you will relapse. However relapse is not caused by anything you do either
  • There are many types of anti-myeloma and supportive treatment available. Your healthcare team will know which are likely to be most effective for you. You can discuss ways to maintain a good quality of life with your healthcare team
  • Refractory myeloma means that the myeloma has not responded to the treatment. Being refractory to one treatment does not mean you are refractory to all treatments
  • There are lots of ways you can help yourself to cope, reduce stress and live well. There are also many places to find different kinds of support, including through Myeloma UK
  • Different patients are likely to experience different numbers of relapse. Your healthcare team can discuss ongoing treatment options and will be there for you if you are thinking about stopping treatment
  • Maintenance treatment is the name for further treatment given after your main treatment to try to prolong remission time
  • There is lots of current research investigating how to achieve and prolong remission, including choosing treatments targeting a patients individual genetic subtype of myeloma (stratified treatment)

Myeloma UK Infopack for relapsed_refractory myeloma patients

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