In blood cancer, relapsed means that the cancer has come back after a period of improvement or being in remission. Refractory means the cancer is not responding to treatment, stops responding over time, or is difficult to treat.
It is possible for your cancer to be both relapsed and refractory. Meaning that it has returned and is also not responding to treatment.
Some types of blood cancer are more likely to relapse or become refractory.
Relapsed blood cancer
Blood cancer can relapse when a small number of cancer cells survive treatment and stay hidden in the body. After a time, these cells can grow and cause your cancer to return. A relapse can happen months or even years after treatment.
Symptoms of blood cancer relapse
Your symptoms will depend on your type of blood cancer. However, they are usually like the symptoms you had when you were first diagnosed. This could include:
- unexplained night sweats
- unexplained fever
- weight loss without trying
- rash or skin itch
- swollen lymph nodes in the neck, armpit or groin
- any of the same symptoms you had at diagnosis.
Find information on the symptoms of your blood cancer by visiting our types of blood cancer webpage.
Refractory blood cancer
Blood cancer is called refractory when it does not respond to treatment or stops responding during treatment. Some cancer cells can be resistant to treatment from the beginning. Others adapt during treatment to survive.
Tests and scans during treatment show if your blood cancer is responding. If it’s not responding, it is refractory and other treatment options will be discussed with you.
Treatment options for relapsed and refractory blood cancer
There are usually several treatment options for many types of blood cancers. Some treatments are only used if the disease has relapsed or is refractory.
Treatments are described in ‘lines’. For example, your first treatment for blood cancer is called ‘first line’ treatment. Your second treatment is called ‘second line’ and so on. Sometimes, medications are only approved for use as second, third, fourth, or later line treatments.
Treatment options are offered based on:
- your blood cancer and subtype
- if you had a remission and for how long
- your age
- overall health and wellbeing
- whether you qualify for a clinical trial
- your wishes.
Types of treatments available include:
- chemotherapy
- immunotherapy
- targeted therapy
- stem cell transplant
- chimeric antigen receptor (CAR) T-cell therapy
- radiation therapy
- clinical trials.
Your haematologist may suggest an ‘off label’ treatment for your relapsed or refractory blood cancer. This means the treatment is approved in Australia for other illnesses, but not for your type of blood cancer.
These treatments can be expensive, and you may need to pay for some or all the cost. Talk to your haematologist about the benefits, risks and costs before starting treatment. In some cases, pharmaceutical companies have special access programs that helps cover part of the cost.
Clinical trials may be available for some types of relapsed or refractory blood cancer. The trials usually compare new or combination therapies with current treatments.
Many trials are randomised, meaning some patients receive the new treatment and others the current treatment. Trials help improve future treatments and may offer access to costly new therapies not on the Pharmaceutical Benefits Scheme (PBS) in Australia.
If you are considering a clinical trial, your doctor will explain:
- the possible risks and benefits
- how it compares to current treatments
- what is involved.
You will need to give informed consent before taking part.
Treatments that aren’t approved in Australia can sometimes be used for relapsed or refractory blood cancer.
To get access to unapproved treatment your doctor must apply through the Special Access Scheme (SAS). This scheme is part of the Therapeutic Goods Administration (TGA).
There are two application types:
- Category A is for patients who are very sick and may die within months, or who could die early if they don’t get treatment soon.
- Category B is for all the other patients who do not meet Category A.
You can read more about the SAS on the TGA website.
Palliative care may be recommended if your blood cancer is not responding to treatment or is unlikely to go into long-term remission. It focuses on improving quality of life and supporting your overall wellbeing. This can include help with managing symptoms, as well as emotional, psychological, social, and practical support for you and your family. It can be given alongside treatment for blood cancer.
You can read more on our palliative care and blood cancer webpage.
Second opinion
If you are unsure about your diagnosis or treatment, you are entitled to seek a second opinion. This may be at the same hospital or clinic, or at a different location. If you feel overwhelmed, then you might benefit from speaking with someone at the Leukaemia Foundation, your GP, or a counsellor for advice.
Living with relapsed and refractory blood cancer
Relapsed and refractory blood cancer can affect your everyday life in many ways. It could be that you are managing symptoms, trying to exercise or managing your nutrition. There are some helpful resources and information to guide you on our living well with blood cancer webpage.
References
- Access to unapproved therapeutic goods for individual patients (Special Access Scheme) | Therapeutic Goods Administration (TGA)
- Drug resistance in cancer: molecular mechanisms and emerging treatment strategies – PMC
- Immune evasion in cancer: mechanisms and cutting-edge therapeutic approaches | Signal Transduction and Targeted Therapy
- Living with relapse | Blood Cancer United
- Masters of adaptation: How cancer and immune cell plasticity mediates tumor progression – PMC
- Relapsed and Refractory Lymphoma | Lymphoma Research Foundation
- Strategies for Relapsed or Refractory Lymphoma | Banner
- Your feelings if blood cancer comes back or does not respond to treatment – Leukaemia Care
