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CAR T-cell therapy is a special treatment that helps your own immune system fight cancer. It uses a type of white blood cell called a T-cell lymphocyte. These cells are taken from your body, changed in a lab to help them better fight cancer, and then returned to you. This process takes time and planning, but it can offer hope to people with some types of blood cancer – including some B-cell lymphomas.
It can take up to 6 weeks between deciding to have CAR T-cell therapy and actually getting the treatment. This is because there are a lot of steps to getting this personalised treatment.
Because of this, your doctor will need to do tests to make sure it’s safe to wait for treatment. The lymphoma will need to be stable – meaning that it cannot be actively and quickly growing. If it is, you may need to start a different treatment sooner. If this is the case for you, you may not be able to have CAR T-cell therapy.
However, in some cases, you may be able to have a “bridging treatment”. This means having treatment with chemotherapy or other medicine while waiting for CAR T-cells. The aim of the bridging treatment is to keep your lymphoma stable and stop it from getting worse.
The CAR T-cell process is complex and you will have support from many health professionals during this time. Below is a step-by-step guide of what to expect.
First, your doctors will do tests to see if CAR T-cell therapy is right for you. This includes blood tests, scans, and checking your overall health. If the tests show you’re a good match, the treatment process can begin.
Once you’re approved, your T-cells need to be collected. This happens through a procedure called apheresis. You will be connected to the apheresis machine with a tube running from your cannula or central line to the machine. The machine then gently and slowly pulls out some of your blood, processes it and takes out the T-cells. It then returns the rest of your blood back into your body.
To keep you safe, only a small amount of blood is removed at any time. This collection is done in a hospital or special clinic and can take several hours. You will be awake for this procedure, and it should not hurt at all.
After collection, your T-cells are sent to a special lab. There, scientists add a new part called a “Chimeric Antigen Receptor” (CAR). CARs help the T-cells find and kill lymphoma more effectively. This part of the process can take a few weeks.
The CAR is a special man-made protein. You can think of it as a special magnetic key that is attracted to, and locks onto lymphoma cells. Because the CAR is attached to the T-cell, it brings the T-cell straight to the lymphoma cell so it can fight and recruit other immune cells to destroy the lymphoma.
Before you have your CAR T-cell infusion, you may need to have a short round of chemotherapy. This helps make space in your body so the CAR T-cells can multiply (make more CAR T-cells) and work better.
Your modified T-cells – now called CAR T-cells are sent back to the hospital. You’ll receive them through a drip into your vein, like a blood transfusion. This is usually a simple and quick transfusion and often takes less than 30 minutes.
Once inside your body, the CAR T-cells go to work finding and fighting the lymphoma. They are also able to clone themselves. This means that they can make more copies of themselves, so you have even more CAR T-cells to fight the lymphoma.
After the infusion, you’ll need to stay in hospital for at least one to two weeks. This is to make sure your body reacts safely. Some side-effects are delayed, so even if you are well enough to leave hospital, you will need to stay near the hospital with your carer for up to 4-8 weeks. It’s important to have someone with you (a carer), as you may need help and support during this time.
Note: You are not allowed to drive for 8 weeks after CAR T-cell therapy, so it is important to have someone help you even after you are discharged from hospital.
If you live in a rural or remote area, or a different state, you may have to travel a long way to get treatment. This can mean being away from your home, family, friends, work, pets, and other supports. Most people bring one main carer with them. This can be hard on families, especially if children or others are left behind.
During this time, a hospital social worker can help. They’re there to support you and your carer. They can help with travel plans, finding places to stay, linking you with financial support, and talking through any worries you have.
CAR T-cell therapy is a big journey, but you’ll have a health care team, including nurses, doctors, and social workers, to guide you every step of the way.
Children can be affected by lymphoma if they are the patient, or if a parent, brother or sister has lymphoma. This can be a scary time for them and forces them to face big stressors when they should be living care-free.
CAR T-cell therapy may also mean they are away from their parents or siblings for long times, which can be difficult – especially if you have to travel long distances for treatment.
There is support available for children and their families affected by lymphoma. Some organisations who can help include:
To diagnose lymphoma you will need a biopsy. A biopsy is a procedure to remove part, or all of an affected lymph node and/ or a bone marrow sample. The biopsy is then checked by scientists in a laboratory to see if there are changes that help the doctor diagnose lymphoma.
When you have a biopsy, you may have a local or general anaesthetic. This will depend on the type of biopsy and what part of your body it is taken from. There are different types of biopsies and you may need more than one to get the best sample.
Core or fine needle biopsies are taken to remove a sample of swollen lymph node or tumour to check for signs of lymphoma.
Your doctor will usually use a local anaesthetic to numb the area so you don’t feel any pain during the procedure, but you will be awake during this biopsy. They will then put a needle into the swollen lymph node or lump and remove a sample of tissue.
If your swollen lymph node or lump is deep inside your body the biopsy may be done with the help of ultrasound or specialised x-ray (imaging) guidance.
You might have a general anaesthetic for this (which puts you to sleep for a little while). You may also have a few stitches afterwards.
Core needle biopsies take a bigger sample than a fine needle biopsy.
During this procedure, a surgeon will remove the whole lymph node or lump and send it to pathology for testing. You may have a general anaesthetic which will put you to sleep for a little while, so you stay still and feel no pain.
You will have a small wound with a few stitches, and a dressing over the top.
Stitches usually stay in for 7-10 days, but your doctor or nurse will give you instruction on how to care for the dressing, and when to return to have the stitches out.
Excisional node biopsies are more reliable than fine needle or core needle biopsies for diagnosing lymphoma.
Blood tests are taken when trying to diagnose your lymphoma, but also throughout your treatment to make sure your organs are working properly and can cope with our treatment.
Once your doctor gets the results from you blood tests and biopsies they will be able to tell you if you have lymphoma and may also be able to tell you what subtype of lymphoma you have. They will then want to do more tests to stage and grade your lymphoma.
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To understand lymphoma, you need to know a bit about your B-Cell lymphocytes.
B-Cell lymphocytes:
Lymphoma develops when some of your B-cell lymphocytes (B-cells) become cancerous. They grow uncontrollably, are abnormal, and do not die when they should.
When you have lymphoma your cancerous B-cells:
Some lymphomas grow very quickly, which means the cancerous B-cells are multiplying (making new copies of themselves). Other cancerous B-cells may live longer than they should.. B-cells (and many other cells) are designed to live for a purpose. Once they have achieved that purpose, they naturally die to make room for new stronger healthy B-cells.
In some cases, lymphoma develops when the cancerous B-cells just keep living even when they have no purpose. They then take up too much room which can stop your body making new healthy cells.
Please note:
Lymphoma Australia staff are only able to reply to emails sent in English language.
You need healthy T-cells to make CAR T-cells. For this reason, CAR T-cell therapy cannot be used if you have a T-cell lymphoma – yet.
For more information on CAR T-cells and T-cell lymphoma click here.
Special Note: Although your T-cells are removed from your blood for CAR T-cell therapy, most of our T-cells live outside of our blood – in our lymph nodes, thymus, spleen and other organs.