If you have a slow-growing (indolent) lymphoma or CLL, you may not need treatment. Instead, your doctor may choose a watch and wait approach.

The term watch and wait can be a little misleading though. It is more accurate to say “active monitoring”, because your doctor will actively monitor you during this time. You will see the doctor regularly, and have blood tests and other scans to make sure you stay healthy, and your disease is not getting worse. However, if your disease does get worse, you may start treatment.

When is Watch & Wait the best option?

Watch and wait may be the best option for you if you do not have many symptoms, or risk factors that need urgent treatment. 

It can be difficult knowing you have a type of cancer, but are not doing anything to get rid of it. Some patients even call this time “watch and worry”, because it can be uncomfortable not doing anything to fight it. But, watch and wait is a great way to start. It means the lymphoma is growing too slowly to cause you any harm, and your own immune system is fighting, and doing a good job keeping your lymphoma under control. So in fact, you are already doing a lot to fight the cancer, and doing a really good job at it. If your immune system is keeping it under control, you will not need extra help at this point. 

Why is treatment not needed?

Extra medicine that can make you feel quite sick or cause long term side effects, will not help at this point. Research shows there is no benefit to starting treatment early, if you have a slow-growing lymphoma or CLL and no troublesome symptoms. This type of cancer will not respond well to current treatment options. Your health will not be improved, and you will not live longer by starting treatment earlier. If your lymphoma or CLL starts to grow more, or you start to get symptoms from your disease, you might then start treatment.

Many patients may need to have active treatment such as those listed further down this page at some time though. After you have had treatment, you may again go on to watch and wait. However, some patients with indolent lymphomas never need treatment.

When is Watch & Wait not the best option?

Watch and wait is only appropriate if you have a slow growing lymphoma or CLL, and are not having troublesome symptoms. Your doctor may choose to offer you active treatment if you experience the following symptoms: 

• B symptoms – which include drenching night sweats,  persistent fevers & unintended weight loss
• Problems with your blood counts
• Organ or bone marrow damage because of the lymphoma

How will the Doctor keep me safe while I’m on Watch & Wait?

Radiotherapy can be used to treat lymphoma, or improve your symptoms

Radiotherapy uses high-energy x-rays (radiation), to kill cancer cells. It can be used as a treatment on its own, or with other treatments such as chemotherapy.

There are different reasons you doctor may suggest radiation treatment for you. It can be used to treat and maybe cure some early lymphomas, or to improve symptoms. Some symptoms such as pain or weakness may happen if your lymphoma tumour becomes too large, or is putting pressure on your nerves or spinal cord.  In this case, the radiation is given to shrink the tumour and relieve the pressure. However, it is not intended to be used as a cure. 

How does radiotherapy work?

The X-rays cause damage to the cell’s DNA (the genetic material of the cell) which makes it impossible for the lymphoma to repair itself. This causes the cell to die. It usually takes a few days or even weeks after radiation treatment begins for the cells to die. This affect can last for several months though, so even months after you finish treatment, the cancerous lymphoma cells can still be destroyed.

Unfortunately, radiation cannot tell the difference between your cancerous and non-cancerous cells. As such, you can get side-effects that affect your skin and organs near the area you’re having radiation treatment. Many radiation techniques these days are becoming more and more accurate targeting the cancer more precisely, however as the X-rays need to pass through your skin and other tissue to reach the lymphoma, all these areas can still be affected.

Your radiation oncologist (a specialist doctor that works with radiation) or nurse will be able to talk to you about what side-effects you may get, depending on the location of your tumour. They will also be able to advise you on some good skin products to manage any skin irritation you get.

Types of radiotherapy

There are different types of radiotherapy, and what you have may depend on where in your body the lymphoma is, the facility where you’re having treatment, and why you are having the radiation treatment. Some types of radiation treatment are listed below.

Intensity-modulated radiotherapy (IMRT)

IMRT allows different doses of radiotherapy to be given to different parts of the area being treated. It can reduce side-effects including late side-effects. IMRT is often used to treat cancer that is close to vital organs and structures.

Involved-field radiotherapy (IFRT)

IFRT treats a whole lymph node area, such as lymph nodes in your neck or groin.

Involved-node radiotherapy (INRT)

INRT treats just the affected lymph nodes and small margin around.

Total body irradiation (TBI)

TBI uses high energy radiotherapy to your whole body. It can be used as part of your treatment before an allogeneic (donor) stem cell transplant to destroy your bone marrow. This is done to make space for the new stem cells. Because it destroys your bone marrow, TBI can also affect your immune system making you more at risk of infections.

Total skin electron radiotherapy

This is a specialised technique for lymphoma of the skin (cutaneous llymphomas). It uses electrons to treat your whole skin surface.

Proton beam therapy (PBT)

PBT uses protons instead of X-rays. A proton uses a positively charged, high energy particle to destroy cancer cells. The radiation beam from PBT can target cells more precisely, so it helps to protect healthy tissues around the tumour.

What to expect

Radiotherapy is usually done in dedicated cancer care clinics. You will have an initial planning session, where the radiation therapist can take photos, CT scans, and work out exactly how to program the radiation machine to target your lymphoma.

You will also have another specialist called a Dosimetrist, who plans the exact dose of radiation you get with each treatment.

Radiation tattoos

The radiation therapists will give you little needle/s that make small freckle like tattoos on your skin. This is done to make sure they line you in the machine correctly each day so the radiation always reaches your lymphoma and not other parts of your body. These little tattoos are permanent, and some people look at them as a reminder of what they have overcome. Others may want to add to them to make them into something special.

However, not everyone wants a reminder. Some tattoo shops offer free tattoo removal for those who have had them for medical reasons. Just phone or pop in to your local tattoo parlour and ask.

Whatever you choose to do with your tattoos – make no changes until you have spoken to your doctor about when the best time to add to, or remove them would be.

How often will I get radiation treatment??

The dosage of radiation is split into several treatments. Normally you will go into the radiation department everyday  (Monday to Friday) for 2 to 4 weeks. This is done because it allows your healthy cells time to recover in between treatments. It also allows more cancer cells to be destroyed.

Each session usually takes 10-20 minutes. The treatment itself only takes 2 or 3 minutes. The rest of the time is making sure you are in the right position and the X-ray beams are aligned properly. The machine is noisy, but you will not feel anything during treatment.

What dose of radiation will I get?

The total dose of radiotherapy is measured in a unit called a Gray (Gy). The Gray is divided into separate treatments called ‘fractions’.

Your total Gray and how the fractions are worked out will depend on your subtype, location and size of your tumour. Your radiation oncologist will be able to talk to you more about the dose they prescribe for you.

Side effects of radiation treatment

Changes to your skin and extreme tiredness not improved with rest (fatigue) are common side-effects for many people having radiation treatment. Other side-effects may depend on the where in your body the radiation is targeting. 

Side-effects of radiation treatment often involves skin reactions over the part of your body having the treatment. Fatigue is also a common side-effect for anyone having treatment. But there are other side-effects that are ore dependent on the location of the treatment – or which part of your body has the lymphoma being treated.

Skin reaction

The skin reaction may look like a bad sun burn and, although it can cause some blistering and a permanent “tan line” it is not actually a burn. It is a type of dermatitis or inflammatory skin reaction that happens only on the skin above the area being treated. 

Skin reactions can sometimes continue to get worse for about 2 weeks after treatment ends, but should have improved within a month of finishing treatment.

Your radiation team will be able to talk to you about the best way to manage these skin reactions and which products such as moisturisers or creams would work best for you. However, some things that may help include:

• Wearing loose clothes
• Using good quality bed linen
• Mild washing powder in your washing machine – some are designed for sensitive skin
• Washing your skin gently with “soap free” alternatives, or a mild soap 
• Taking short, lukewarm baths or showers
• Avoiding alcohol-based products on the skin
• Avoid rubbing skin
• Keep your skin cool
• Cover up when outside, and avoid sunlight on your treated area where possible. Wear a hat and sunscreen when outdoors
• Avoid swimming pools

Fatigue

Fatigue is a feeling of extreme tiredness even after rest. This can be caused by the added stress your body is under during the treatment, and trying to make new healthy cells, daily treatments, and the stress of living with lymphoma and its treatments.

Fatigue can start soon after radiation treatment starts, and last for several weeks after it finishes.

Some things that can help you manage your fatigue can include:

• Plan ahead if there’s time, or ask loved ones to prepare meals in advance that you just need to heat up. High protein foods such as red meat, eggs and leafy green vegetables can help your body make new healthy cells.
• Light exercise has shown to improve energy levels and fatigue, so keeping active may help with lack of energy and falling asleep.
• Listen to your body and rest when you need to
• Track your fatigue, if you know it is usually worse at a certain time of day, you can plan activities around that
• Keep a normal sleep pattern – even if you feel tired, try going to bed and getting up at your usual times. Complementary therapies may help including relaxation therapy, yoga, meditation, and mindfulness.
• Avoid stress where possible.

In some cases, fatigue may be caused by other factors such as low blood counts. If this is the case, you may be offered a blood transfusion to improve your blood counts.

It is important to let your doctor know if you are struggling with fatigue. 

Other side-effects can include:

• Hair loss – but only to the area being treated
• Nausea
• Diarrhoea or stomach cramps
• Inflammation – to your organs near the site being treated

The video at the bottom of this treatment types section provides more information on what to expect with radiation treatment including side-effects.

Chemotherapy (chemo) has been used to treat cancer for many years. There are different types of chemo medications and you may have more than one type of chemotherapy to treat your CLL or lymphoma. Any side-effects you get will depend on which chemotherapy medications you have. 

How does chemo work?

Chemotherapy works by directly attacking cells that are growing quickly. This is why it often works well for aggressive – or fast growing lymphomas. However it is also this action against fast growing cells that can cause unwanted side-effects in some people, such as hair loss, mouth sores and pain (mucositis), nausea and diarrhea.

Because the chemo can affect any fast-growing cell, and cannot tell the difference between healthy cells and cancerous lymphoma cells – it is called a “systemic treatment”, meaning any system of your body can be affected by side-effects caused by chemo.

Different chemotherapies attack the lymphoma at different stages of growth. Some chemotherapy attack cancer cells that are resting, some attack those that are just newly growing, and some attack lymphoma cells that are quite big. By giving chemo’s that work on cells in different stages, there is the possibility of killing off more lymphoma cells and getting a better result. By using different chemotherapies, we can also lower the doses a little which will also mean having less side-effects from each medication, while still getting the best result.

How is chemo given?

Chemo can be given in different ways, depending on your individual subtype and situation. Some ways chemo can give include:

• Intravenously (IV) – through a drip in your vein (most common).
• Oral tablets, capsules or liquid – taken by mouth.
• Intrathecal – given to you by a doctor with a needle into your back, and into the fluid that surrounds your spinal cord and brain.
• Subcutaneous – an injection (needle) given into the fatty tissue under your skin. It’s usually given into your abdomen (tummy area) but can also be given into your upper arm or leg.
• Topical – some lymphomas of the skin (cutaneous) may be treated with a chemotherapy cream.

What is a chemotherapy cycle?

Chemotherapy is given in “cycles”, which means that you will have your chemo over one or more days, then have break for two or three weeks before having more chemo. This is done because your healthy cells need time to recover before you get more treatment.

Remember above we mentioned that chemo works by attacking fast growing cells. Some of your fast growing cells can also include your healthy blood cells. These can become low when you have chemo. 

The good news is that your healthy cells recover faster than your lymphoma cells. So after each round – or cycle of treatment, you will have a break while your body works to make new good cells. Once these cells are back up to a safe level, you will have the next cycle – this is usually two or three weeks depending on what protocol you are having however, if your cells take longer to recover, your doctor may suggest a longer break. They may also offer some supportive treatments to help your good cells recover. More information on supportive treatments can be found further down this page. 

More information on treatment protocols and their side-effects

Depending on your subtype of lymphoma you may four, six or more cycles. When all these cycles are put together it is called your protocol or regimen. If you know the name of your chemotherapy protocol, you can find more information, including expected side-effects on it here.

For more information on chemotherapy, click on the button at the bottom of the treatment types section to watch a short video.

Monoclonal antibodies (MABs) were first used to treat lymphoma in the late 1990’s. However, in recent years  many more monoclonal antibodies have been developed. They can work directly against your lymphoma or attract your own immune cells to your lymphoma cells to attack and kill it. MABs are easy to identify because when you use their generic name (not their brand name), they always end with the three letters “mab”. Examples of MABs commonly used to treat lymphoma include rituximab, obinutuzumab, pembrolizumab.

Some MABs, such as rituximab and obinutuzumab are used along side chemo to treat your lymphoma. But they are also often used as a “maintenance” treatment. This is when you have finished your initial treatment and had a good response. Then you continue to have only the MAB for about two years. This helps to keep your lymphoma in remission for a longer time.

How do monoclonal antibodies work?

Monoclonal antibodies only work against lymphoma if they have specific proteins or immune checkpoints on them. Not all lymphoma cells will have these markers, and some may have only one marker, while others may have more. Examples of these include CD20, CD30 and PD-L1 or PD-L2. Monoclonal antibodies can fight your cancer in different ways:

Direct

Immune engaging 

Cytokine inhibitors

As well as being a MAB, Cytokine Inhibitors are also a type of immunotherapy, because they work by targeting your immune system.

Some rare side-effects from cytokine inhibitors can lead to permanent changes such as thyroid problems, diabetes Type 2 or fertility problems. These may need to be managed with other medications or with a different specialist doctor. Talk to your doctor about what the risks are with treatment.

Bispecific monoclonal antibodies

Conjugated

More information

Side-effects of Monoclonal antibodies (MABs)

• Fever, chills or shivering (rigors)
• Muscle aches and pains
• Diarrhoea
• Rash over your skin
• Nausea and or vomiting
• Low blood pressure (hypotension)
• Flu-like symptoms.

Immunotherapy is a term used for treatments that target your immune system rather than your lymphoma. They do this to change something about the way your own immune system recognises and fights your lymphoma.

Different types of treatment can be considered immunotherapy. Some MABs called Immune Checkpoint Inhibitors or Cytokine Inhibitors are a type of immunotherapy. But other treatments such as some targeted therapies or CAR T-cell therapy are also types of immunotherapy. 

Some lymphoma cells grow with a specific marker on the cell that your healthy cells do not have. Targeted therapies are medications that only recognise that specific marker, so it can tell the difference between lymphoma and healthy cells. 

The targeted therapies then attach to the marker on the lymphoma cell and stop it from getting any signals to grow and spread. This results in the lymphoma being unable to get the nutrients and energy it needs to grow, resulting in the lymphoma cell dying. 

By attaching only to markers on the lymphoma cells, targeted treatment can avoid damaging your healthy cells. This results in less side-effects than systemic treatments like chemo, that cannot tell the difference between lymphoma and healthy cells. 

Side-effects of targeted therapy

You can still get side-effects from targeted therapy though. Some can be similar to side-effects for other anti-cancer treatments, but are managed differently. Make sure you talk to you doctor or specialist nurse about what side-effects to look out for, and what you should do if you get them.  

Common side-effects of targeted therapy can include:

• diarrhea
• body aches and pain
• bleeding and bruising
• infection
• tiredness

Many targeted therapies, some chemotherapies and immunotherapies are taken by mouth as a tablet or capsule. Anti-cancer treatments taken by mouth are also often called “oral therapies”. It is important to know if your oral therapy is a targeted therapy or a chemotherapy. If you are not sure ask your doctor or nurse. 

The side-effects you need to look out for, and how you manage them will be different depending on which type of oral therapy you are taking.

Some common oral therapies used to treat lymphoma are listed below.

Oral therapies – Chemotherapy

Oral therapy – Targeted and Immunotherapy

What is a stem cell?

To understand stem cell or bone marrow transplants, you need to understand what a stem cell is.

Stem cells are very immature blood cells that develop in your bone marrow. They are special because they have the ability to develop into which ever blood cell your body needs, including:

• red blood cells – that carry oxygen around your body
• any of your white blood cells including your lymphocytes and neutrophils that protect you from disease and infection
• platelets – that help your blood to clot if you bump or injure yourself, so you don’t bleed or bruise too much.

Our bodies make billions of new stem cells every day because our blood cells are not made to live forever. So everyday, our bodies are working hard to keep our blood cells at the right number. 

What is a stem cell or bone marrow transplant?

A stem cell transplant is a procedure that may be used to treat your lymphoma, or to keep you in remission for longer if there is high chance your lymphoma will relapse (come back). Your doctor may also recommend a stem cell transplant for you when your lymphoma relapses.

A stem cell transplant is a complicated and invasive procedure that occurs in stages. Patients undergoing a stem cell transplant are first prepared with chemotherapy alone or in combination with radiotherapy. The chemotherapy treatment used in stem cell transplants is given at higher doses than usual. The choice of chemotherapy given in this stage depends on the type and intent of the transplant. There are three places that stem cells for transplant can be collected from:

1. Bone marrow cells: stem cells are collected directly from the bone marrow and are called a ‘bone marrow transplant’ (BMT).

2. Peripheral stem cells: stem cells are collected from peripheral blood and this is called a ‘peripheral blood stem cell transplant’ (PBSCT). This is the most common source of stem cells used for transplantation.

3. Cord blood: stem cells are collected from the umbilical cord after the birth of a newborn. This is called a ‘cord blood transplant’, where these are much less common than peripheral or bone marrow transplants.

More information on Stem Cell Transplants

For more information on stem cell transplants see our following webpages.

Stem cell transplants – an overview

Autologous stem cell transplants – using your own stem cells

Allogeneic stem cell transplants – using somebody else’s (a donor’s) stem cells

CAR T-cell therapy is a newer treatment that uses and enhances your own immune system to fight your lymphoma. It is only available for people with certain types of lymphoma including:

• Primary Mediastinal B-Cell Lymphoma (PMBCL)
• Relapsed or refractory Diffuse Large B-Cell Lymphoma (DLBCL)
• Transformed Follicular Lymphoma (FL)
• B-cell Acute Lymphoblastic Lymphoma (B-ALL) for people 25 years old or younger

Everyone in Australia with an eligible subtype of lymphoma, and meet the necessary criteria can get CAR T-cell therapy. However for some people, you may need to travel and stay in a big city or to a different state to access this treatment. The costs of this is covered through the treatment funds, so you should not have to pay for your travel or accommodation to access this treatment. The costs of one carer or support person are also covered.

To find information on how you can access this treatment please please ask your doctor about the patient support programs. You can also see our CAR T-cell therapy webpage here for more information on CAR T-cell therapy.

Where is CAR T-cell therapy offered?

In Australia, CAR T-cell therapy is currently offered at the below centres:

• Western Australia – Fiona Stanley Hospital.
• New South Wales – Royal Prince Alfred.
• New South Wales – Westmead Hospital.
• Victoria – Peter MacCallum cancer centre.
• Victoria – The Alfred Hospital.
• Queensland – Royal Brisbane and Women’s Hospital.
• South Australia – stay tuned.

There are also clinical trials that are looking at CAR T-cell therapy for other subtypes of lymphoma. If you are interested, ask your doctor about any clinical trials you may be eligible for.

For information on CAR T-cell therapy, click here. This link will take you to Kim’s story, where she talks about her experience of going through CAR T-cell therapy to treat her Diffuse large B-cell lymphoma (DLBCL). Further links for more information on CAR T-cell therapy are also provided.

You can also contact us at Lymphoma Australia by clicking on the “contact us” button at the bottom of this page.

Some lymphomas can be caused by infections. In these rare cases, the lymphoma can be treated by treating the infection. 

For some types of lymphoma, such as marginal zone MALT lymphomas, the lymphoma stops growing and eventually naturally dies once the infections have been eliminated. This is common in gastric MALT caused by H. pylori infections, or for non-gastric MALTs where the cause is an infection in or around the eyes. 

Surgery may be used to remove the lymphoma entirely. This may be done if you one local area of lymphoma that can be easily removed. It may also be needed if you have splenic lymphoma to remove your whole spleen. This surgery  is called a splenectomy. 

Your spleen is a major organ of your immune and lymphatic systems. It is where many of your lymphocytes live, and where your B-cells make antibodies to fight infection.

Your spleen also helps to filter your blood, breaking down old red cells to make way for new health cells and storing white blood cells and platelets, which help your blood to clot. If you need a splenectomy, your doctor will talk to you about the precautions you may need to take after your surgery.

Clinical trials are an important way to find new treatments, or combinations of treatments to improve outcomes for patients with lymphoma or CLL. They also can offer you the opportunity to try new types of treatment that have not previously been approved for you type of lymphoma.

To learn more about clinical trials, please visit our webpage on Understanding Clinical Trials by clicking here.

Having treatment is your choice. Once you have all the relevant information, and have had the opportunity to ask questions, how you proceed is up to you.

While most people choose to have treatment, some may choose not to have treatment. There is still a lot of supportive care you can access to help you live well for as long as possible, and to organise your affairs.

Palliative care teams and social workers are a great support for helping organising things when you are preparing for end of life, or for managing symptoms. 

Talk to your doctor about getting a referral to these teams.