If a patient relapses or is not responding to their treatment (refractory) it can be a highly emotional time for the whole family. It may be time to start again with a new treatment, but some good advice is to take one day at a time. It could also be a time to talk to the doctor about clinical trials if this has not already been discussed. A clinical trial does not mean you are a guinea pig for new treatments. Sometimes a trial will be giving you access to the BEST treatment
Brief overview of relapsed and refractory lymphoma
Relapse means that the lymphoma has come back after going into complete remission (no evidence of lymphoma). A relapse of lymphoma usually occurs when a small number of malignant cells remain active in the body after treatment is completed. This does not mean that you received the wrong treatment, or the incorrect doses. Unfortunately, some cancer cells are extremely efficient at avoiding death or damage.
A common treatment for lymphoma is chemotherapy, which targets and kills all rapidly dividing cells in the body, including cancer cells. Some cancer cells are slow growing, such as in follicular lymphoma and chronic lymphocytic leukaemia, therefore making them less likely to be targeted by chemotherapy drugs. This is why some indolent lymphomas are more likely to relapse and can be more difficult to treat. A relapse can be very distressing, although many people are treated successfully again and again.
Refractory lymphoma is the term given to cancer that does not go into remission after cancer treatment. The lymphoma continues to grow during treatment and either does not respond or only partially responds to cancer treatment. A small number of people with lymphoma are refractory and are generally treated similarly to relapsed lymphoma.
Sometimes a scan part-way through treatment shows that the treatment is not working as well as hoped. If this occurs, your treating team might switch to a more intensive treatment as part of your first line of treatment.
Emotional impact when lymphoma relapses or is refractory
Unfortunately, there are times when lymphoma does come back after a successful treatment, or it isn’t responding to the conventional treatments administered. Coping with a relapsed or refractory lymphoma can be just as hard as coping with your original diagnosis, and sometimes even harder.
When you are told that your lymphoma has relapsed or is refractory, it is normal to feel angry, upset or overwhelmed. Even if your treating team had prepared you for the possibility of a relapse, it is still very disappointing news to take in.
Many people say that being told they have relapsed disease triggers an intense emotional response, similar to how they felt when they were initially diagnosed. Some people even say that their response to the news of a relapse was more severe than the original diagnosis.
Many people say that hearing that their lymphoma is not responding to the treatment as desired, causes similar intense feelings.
Some common emotional responses to relapsed and refractory lymphoma include:
- Fear – It can be frightening to think about the possibility of having more treatment, especially if you struggled/are struggling with significant side effects.
- Sadness and anxiety
- You may initially doubt whether you have the motivation and mental strength to go through it all again, or keep going through treatment if it does not seem to be working
- Disappointed – people often feel overwhelmingly disappointed that the cancer chapter of their life is not over or is taking longer to end than they anticipated
But you could find that your previous experiences have given you some skills, knowledge and resources which may help you to cope with the next chapter. For example:
- You know more about your diagnosis, the treatment and prognosis
- You have strategies for dealing with side effects
- You have relationships with your treating team, nurses, allied health & doctors
- You have a better understanding of the healthcare system, and who can help you
- You have an established support network and strategies for stress reduction
What do I do now?
It can be helpful during this time to acknowledge the need for increased support and assurance from your network. Activities, habits and support services that helped you during your first round of treatment may need to be restarted or increased in order to help you cope again.
For example, if you found it helpful to talk to a counsellor or psychologist during your previous treatment, it may be beneficial to reconnect with that therapist now. Some other strategies that may be helpful include:
- Giving yourself permission to experience your emotions as they arise, including taking time to cry if you feel you need to
- Continuing enjoyable hobbies, or taking up new relaxing hobbies, for example swimming, craft groups or meditation classes
- Joining the Lymphoma Australia private Facebook support group for people with lymphoma or CLL ‘Lymphoma Down Under’ and connecting with others in similar situations
- Learning to meditate and practice mindfulness. There are many free smartphone apps for this, or there may be some meditation groups in your local area
- Making time for exercise as often as possible. Even 5-10 minutes a day can significantly reduce stress levels during treatment
- Making healthy food choices and including more fresh fruits and vegetables.
- Ask for a referral to a dietitian if you are not sure about what your dietary requirements are
- Listening to your body and understanding when it needs rest and when it needs activity. Keeping a journal or diary can greatly assist with this strategy
- Creating a sleep schedule and allowing time for rest and relaxation
- It is important to understand that every person who receives a lymphoma diagnosis has a unique physical and emotional experience.
- What may ease the stress and anxiety for one person following relapse or refractory disease may not work for the next.