As treatment is coming to an end or if you have completed treatment, it can raise a number of concerns as it can be difficult to know what to expect when you finish treatment for lymphoma.
What to expect after finishing treatment?
Adjusting to life after lymphoma treatment can be a difficult time for many people. While finishing treatment for lymphoma can be a relief, many people say they may have some challenges in the weeks, months and even years after treatment is finished.
After months of hospital appointments and in frequent contact with your medical team, it can be very unsettling for some, where you may feel anxious or isolated as they have less contact and support from the team. There are a number of physical, mental, emotional and practical concerns that many people raise concerns about.
When will you feel better?
It takes time to recover after treatment for lymphoma. You may have side effects from your treatment that may continue after your treatment ends. How quickly you recover is very individual and will depend on a number of factors that include:
- The treatment that you had
- The side effects that you experienced during treatment
- Your age
- Your general fitness
- Other medical or health conditions
- How you feel in yourself both mentally and emotionally
Recovery will often take some time and you will not be back to full strength or health straight away. If you plan to return to work, to studies or other responsibilities such as caring for others, this may not always go to plan. It is important to be realistic and giving yourself time to recover.
To help with your recovery, adopting a healthy lifestyle will help. This includes a healthy well-balanced diet, building exercise tolerance, good sleep habits, self-care management and caring for your mental or emotional wellbeing will help your recovery.
Treatment and side effects
How each individual is affected during treatment and the side effects that occur is often different for each person. How each person recovers from treatment can also be very individual for each person.
Recovery from more intensive (stronger) treatments, such as a stem cell transplant, usually takes longer than less intensive treatments. Your medical team should be able to provide some guidance to how long it takes for most people who have had a similar treatment to you. They will also know about your particular situation to determine what side effects or factors that may hinder your recovery.
You may have found eating and drinking difficult during your treatment, especially if you had a sore mouth or mouth ulcers (known as oral mucositis). Oral mucositis usually gets better quite quickly after finishing treatment with around 2-3 weeks after chemotherapy (when your blood counts have recovered) and around 5-7 weeks after you have completed radiotherapy.
Your appetite generally recovers within a 3-6 weeks post cancer treatment. Concerns from nausea, reflux and bowel issues generally subside, that in turn will increase your appetite. Slowly increasing your appetite over time will assist your recovery.
Most people’s hair usually starts to grow back 3-6 weeks after the last dose of chemotherapy. Many people initially have fine hair (often referred to baby hair) growth first, that often falls out again before hair grows back properly.
Most people have a full head of hair within 3-6 months of finishing chemotherapy and 6-12 months after finishing radiotherapy or may not grow back at all at that patch. How quickly it grows back depends on several factors including, your ethnicity, the treatment that you have had and how you responded to treatment and your general health.
Hair may have a new colour or texture and some people who are known to always have had straight hair, can change to very curly. Or it could grow back grey until the cells that control the pigment in the hair begin functioning again.
Caring for your new hair:
- Brush your hair gently to avoid damaging it
- Use a low heat setting on your hair dryer
- Have your hair cut regularly to remove damaged strands
- Wait 6-12 months after finishing treatment before you colour, chemically straighten or perm your hair, have woven-in or glued-in hair extensions
Immune system, blood & bone marrow problems
Lymphoma and treatments for lymphoma can affect your bone marrow. This can lower your red blood cell count (anaemia), white blood cells (neutropoenia) or platelet count (thrombocytopaenia).
Bone marrow problems usually recover within about 6 weeks of your treatment finishing, but it can take longer, particularly after stronger chemotherapy regimens (combinations of drugs). Your immune system might be lower than usual for several months after treatment.
Low blood counts can increase your risk of developing infections or make you more prone than usual to bruising or bleeding (for example, nose bleeds, bleeding gums or heavier periods). While you are waiting for you blood counts to recover, there are things you can do to reduce your risk of infection and bleeding.
It is important to have any vaccinations that your medical team recommends protecting you from infection. You may need to repeat vaccines you have already had because cancer treatment can affect your immunity
Cancer related fatigue is the most common side effect for lymphoma patients, caused by the lymphoma and treatment. Almost everybody with lymphoma/CLL is affected by fatigue and can range from mild symptoms to severe.
Fatigue often lasts for months after treatment has ended. It usually improves gradually. The time it takes for it to get better varies between each person. For some people, fatigue can last a year or more. In a few people, it may be last for several years, although it gets less interfering over time. For some, energy levels might never be quite the same as they were before.
Fatigue can be very distressing but there are lots of strategies you can try to help cope with it. Speak to your medical team if fatigue that starts or gets worse months after treatment.
Chemo brain – cancer-related cognitive impairment
Chemo brain describes changes in memory, thinking processes and concentration that affect some people with cancer. Despite its name, it doesn’t only affect people who have had chemotherapy.
Chemo brain can be a very frustrating and debilitating side effect of cancer and its treatment. Chemo brain affects a third of patients who have received chemotherapy and chemo brain can also affect patients who receive only radiotherapy.
The causes of the concentration and memory problems are not well understood. It is probably the combination of the effects of the cancer and of the cancer treatments. These effects include inflammation and changes to chemicals, hormones, and blood flow in the brain.
For some people, the effects of ‘chemo brain’ may only last a few weeks. Most people get better between 6 months and 2 years after finishing treatment. However, about a third of people have symptoms that last longer, sometimes for many years.
You may have lost or gained weight during your treatment, due to possible changes in your appetite, taste, digestive system and metabolism.
If you have lost weight, it should begin to build up as you become more active and your appetite improves. If you have gained weight because of your treatment, it can be harder to lose. You should aim to return to a healthy weight gradually over a few months.
During your treatment, you might have changed the way you eat to help you cope with nausea and vomiting and changes in your appetite and bowel habits. When treatment ends, it is important to return to a healthy diet. This will help you recover mentally and physically and can also reduce your risk of other health conditions in later life.
It is not usual for people to put on more wight than they’d like in the year or so after lymphoma treatment ends. The reason for the weight gain isn’t clear but may be due to a combination of effects including the cancer itself, changes in diet and activity levels during and after treatment.
Changes to your body shape and weight can affect the way you feel about yourself. Speak to your specialist nurse or doctor for advice on gaining or losing weight in a safe and healthy way. You can ask for a referral to a dietician to help you.
Some treatments for lymphoma can affect your nerves, causing pain, loss of sensation and tingling, often in the hands and feet. This is known as peripheral neuropathy.
For some people, peripheral neuropathy gets better within a few days of finishing treatment. For others, it takes longer. Symptoms usually get better within 6-12 months, but they can last longer. For a small number of people, peripheral neuropathy doesn’t go away.
For some women, lymphoma treatment causes early menopause. If this happens, you may have menopause symptoms such as hot flushes, fatigue, weight gain, vaginal dryness, sleep problems and irritability.
Speak with you GP if you think you may be experiencing early menopause. There are treatments that can reduce your symptoms and prevent long-term effects.
Symptoms to look out for
It is natural to worry about your lymphoma coming back (relapsing) after treatment and people often feel anxious in the lead up to their follow up appointments.
If lymphoma relapses after treatment, it usually causes signs and symptoms. These might be the same as before, but they can be different. Lumps might appear in the same place 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. Symptoms of relapse also depend on what type of lymphoma you had before. Your doctor should tell you what to look out for after your treatment ends.
Contact your medical team if you have any of the following symptoms:
- Enlarged lymph nodes (appearing as lumps in your neck, armpit or groin for example)
- Drenching night sweats
- Unexplained weight loss
- Worsening fatigue
- Rashes (if you have skin lymphoma)
- Persistent or unexplained pain
If anything is worrying you between your appointments, let your medical team know. They should be able to reassure you or offer you an earlier appointment if necessary.
Late effects are health conditions that can develop months or even years after treatment for lymphoma. Modern treatments are designed to treat lymphoma effectively while keeping the risk to your long-term as low as possible. Your doctor will monitor you for late effects at your follow-up appointments.
It is important that you maintain regular follow-up appointments with your medical team to monitor.
Emotional impact after completing lymphoma treatment
It is normal to have a mixture of feelings, and to have good and bad days. Some people describe getting cancer, having treatment and recovering as a ‘rollercoaster ride’.
Some people want to return quickly to their usual routines, while others need time to rest after they finish treatment. While some people prefer to ‘get on with it’, others say they want to learn to appreciate things more and prioritise what is important in their lives.
A lymphoma/CLL diagnosis may prompt some people to make positive changes to their lifestyle, such as travelling, spending more time with family or making healthier choices.
Common feelings may include:
Many people are surprised at the mixed feelings they have after treatment finishes. It is common to feel both anxious and excited, sometimes at the same time.
Feeling alone or isolated
After months of hospital appointments and in frequent contact with your medical team at the hospital, many report feelings abandoned and guilty to contact the hospital with concerns about their recovery. Many can feel that their friends and family don’t understand or can’t offer the help you need.
Fear that the cancer may return
It is sometimes hard to separate normal aches and pains and the after-effects of treatments from worrying that the caner has come back. This is a very common concern for many people who have had cancer.
Sadness or depression
It is common to feel sad or down on some days. This is often linked to fatigue after cancer treatment. If you are in a low mood most of the time or have lost interest and pleasure in most things for more than two weeks, you may have depression.
Some people say they feel less confident and more vulnerable after they have had cancer. Often your body and way of thinking may have changed after having cancer and it can take time to adjust.
It is not unusual to feel anxious or hesitant about planning for the future. This anxiety might be higher just before check-ups, on anniversaries of the lymphoma being diagnosed or when you see something about cancer on television for example.
If you have any concerns with the above and need to speak to someone about them, contact your GP, medical team or the Lymphoma Care Nurse team T: 1800 953 081 or email firstname.lastname@example.org for a referral and advice.