It takes time to recover after treatment for lymphoma and you might have side effects that continue for a long time afterwards. How quickly you feel stronger will depend on a range of factors, including:
- the treatment you had – recovery from more intensive (stronger) treatments (for example a stem cell transplant) usually takes longer
- your age
- your general fitness and whether you have other health problems
- how you feel in yourself – recognising your feelings can help you both emotionally and physically.
If you are returning to work, studies, or other responsibilities like caring for others, remember that you won’t be back to your full strength straightaway.
Speak to your doctor, specialist nurse (also known as a clinical nurse specialist or CNS), keyworker or GP – they can advise you about coping with any side effects of the treatments you have had and about what to expect over the coming months.
Cancer-related fatigue is extreme exhaustion, which can be both mental and physical. This is very common during and after cancer treatment and it can last for several months. Many people say that fatigue is one of the most distressing things about having lymphoma.
Why am I tired all the time?
There are lots of possible reasons for fatigue including:
- Disrupted sleep – medication, stress, anxiety and changes to your daily routine can all affect the quality of your sleep.
- Diet and nutrition – if your appetite is smaller and you are not eating as much as you used to, your body has less energy. For some people, treatment makes it harder to absorb the nutrients from food. This means even if you are eating the same as before, you may still feel tired.
- Your mood – feeling down can lower your energy levels. You might sleep more often or less often than usual if you are depressed, both of which can make you more tired.
- Anaemia – chemotherapy can lower the number of red blood cells your bone marrow makes. This can cause a shortage of iron (anaemia), making you tired and breathless.
Your appetite and taste may have changed while you were having treatment. If you have a sore mouth or mouth ulcers (mucositis), it might affect your ability to eat and drink. There are some simple things you can try that may help if you have a sore mouth.
You might have lost or gained weight during your treatment. If you have lost weight, it should begin to build up as you become more active and your appetite improves. If you gained weight because of your treatment, it can take a bit of time to lose.
Changes to our body shape and weight can have a major effect on the way we feel about ourselves. Speak to your specialist nurse or GP for advice on gaining or losing weight in a safe and healthy way.
You could also ask for a referral to a dietitian, who can offer guidance about what to eat to help you reach your goals.
Your hair should start to grow back within about 2 months of finishing treatment. It may look slightly different at first – for example curlier, finer, softer or a different colour. Some people find this difficult to cope with.
You might want to think about things you could wear if you feel uncomfortable about these changes. There are many different types and styles of headwear including headscarves, wigs, turbans, hats and headbands.
If you are thinking about getting a wig, human hair looks very natural and lasts well – although these types of wigs can be expensive.
Synthetic (acrylic) wigs are comfortable and light in weight. They are less costly than human hair wigs. You may also be eligible for help from the NHS towards the cost of a synthetic wig.
Some hospitals offer a wig service to outpatients. Speak to your specialist nurse about this – they may also know about local organisations or charities that supply headwear or offer funding towards the cost of it.
For some women, treatment causes an early menopause. If this happens, your hormone levels will be low and you may get menopausal symptoms including hot flushes, fatigue, weight gain, vaginal dryness, sleep problems and irritability.
Speak to your GP if you are struggling with the symptoms of early menopause.
There are some short video clips of women talking about their experiences of early menopause on the healthtalk.org website.
Bone marrow is the spongy tissue in the centre of some of the large bones of the body where blood cells are made.
Some treatments for lymphoma can affect your bone marrow and lower your blood cell counts.
Bone marrow problems usually recover within about 6 weeks of your treatment finishing, but this can take longer, particularly after stronger chemotherapy regimens.
Some treatments for lymphoma can affect the ‘peripheral nervous system’ (the network of nerves outside the brain and spinal cord). This can cause peripheral neuropathy, with symptoms such as pain, loss of sensation and tingling, often in the hands and feet.
Usually, these symptoms improve within a few weeks but they can last longer. For a small number of people, peripheral neuropathy doesn’t go away.
Peripheral neuropathy is complicated and not always easy to treat but there are some things you can try that may help.
You can listen to a podcast about managing nerve pain on Pain Concern’s website.
Do speak to your doctor too if you have the symptoms we describe above. There may be a pain management clinic or programme that is suitable for you. Drug treatment and creams could also be an option, although these are not helpful for everyone.
Mild cognitive impairment describes the difficulties with memory and attention span that some people have after chemotherapy treatment and other treatments. The symptoms usually improve gradually over the next few months but can last longer.
You may also hear mild cognitive impairment called ‘chemo brain’, ‘cognitive dysfunction’, or ‘cancer-related cognitive disorder ’.
Late effects of treatment are health problems that can affect you months or even years after treatment.
These can be:
- long-term side effects – problems that you had during your treatment that have not gone away
- new problems that only develop some time after treatment – you might hear these described as delayed-onset side effects.
Modern treatments are designed to treat lymphoma effectively while also keeping the risk to your long-term health as low as possible.
Whether you have late effects from your treatment depends on a number of factors. Your medical team should talk to you about the possible side effects and late effects of any treatments before you have them.
It is only natural to worry about your lymphoma coming back (relapsing). People often feel anxious in the lead-up to their follow-up appointments in case their doctors find that their lymphoma has relapsed.
If lymphoma relapses after it has been treated, it usually causes symptoms. Lumps can appear where they were before or they can develop in new places. Sometimes more general symptoms (fevers, night sweats or itching for example) start up again or start for the first time.
Seek advice from your medical team about any of the following symptoms, particularly if you have more than one of them:
- enlarged lymph nodes (appearing as lumps in your armpit, neck or groin for example)
- drenching night sweats
- unexplained weight loss
- worsening fatigue
- rashes (if you have a skin lymphoma)
- persistent or unexplained pain.
Symptoms of relapse will also depend on what kind of lymphoma you had before.
- T-cell lymphomas, for example, are more likely to involve the skin.
- Mantle cell lymphoma is more likely to involve the gut, causing diarrhoea.
Ask your medical team what to look out for and seek advice about anything that is worrying you between your appointments. You can always call your team and ask for an earlier appointment if you feel you need it.
If your lymphoma comes back, it will usually be possible to have another course of treatment. Lots of people with relapsed lymphoma are successfully treated.
The type of treatment you have will depend on:
- what kind of lymphoma you had
- what kind of treatment you had before
- how well you responded to your previous treatment
- your general health and fitness.
With high-grade non-Hodgkin lymphoma or Hodgkin lymphoma, relapse is more likely to happen within 2 years of the end of your first treatment.
If you have advanced-stage low-grade non-Hodgkin lymphoma, relapse is more common but this can be anything from months to years later.
Macmillan cancer support produces a wide range of information about coping with various difficulties after treatment for cancer, including fatigue, hair loss, and chemo brain.
Pain concern is a charity that provides information and support for people living with pain. Their website includes information about nerve pain, managing pain and explaining it to others.
Self management UK is an organisation that offers self-management courses for people living with long-term health conditions.
British Heart Foundation has lots of information about leading a healthy lifestyle.