CAR-T CELL THERAPY TREATMENT

She tolerated her treatment extremely well and was given the all clear in January 2023.

It’s taken me a while to do an update, because sadly, she was one of the unlucky ones whose cancer returned in November 2023 and it was then that she was moved on to try the stem cell treatment where they harvest your stem cells, then use high dose chemotherapy to kill cancer cells before returning the healthy stem cells in the hope of leading to longer remission.

This was very poorly tolerated by her and had to be abandoned on Day minus 5, (as they call Day Zero the day you get your stem cells back) due to acute abdominal pain and had to wait for abdominal surgery.  In the meantime, she relapsed which meant she qualified for CAR-T therapy as third line treatment, approved by the panel.

Because, at that time, the NHS would only offer it to those whose first two treatments had failed, she became a grateful candidate for CAR-T therapy.  The treatment is cutting edge and is still being tested in the UK for other cancers, but has been found to transform survival rates for leukaemia and Non Hodgkin’s Lymphoma.

It involves collecting and genetically modifying immune cells in a patient’s blood, to “train/re-engineer” them to recognise and kill cancer cells – kind of like training little Ninja cells to get back in and FIGHT THE BADDIES.

HOW IT WORKS (in simple terms)

1. Doctors take some of your own T cells (a type of immune cell that normally helps fight infections and cancer) out of your blood.

2. In a lab, they genetically modify those T cells by adding a special man-made receptor (the “CAR”) to their surface.
– Think of the CAR as a new “GPS + weapon” that lets the T cell recognise and lock onto a specific protein on the surface of your cancer cells (most commonly CD19, but other targets exist too).

3. Millions of these CAR-T cells are grown in the lab.

4. Before the infusion you usually get a short course of chemotherapy to make space in your immune system.

5. The CAR-T cells are then infused back into your bloodstream (like a blood transfusion).

6. Once inside, the CAR-T cells start hunting and destroying cancer cells that carry the target protein — often very aggressively.

It’s like giving your immune system a new, custom-made army specifically trained to attack your particular cancer.

It takes a few weeks to complete the process and then the re-engineered T-cells are infused back into the bloodstream via a drip into her vein, where they destroy the cancer.

Within a month of beginning the treatment at University College London Hospital, with tolerable side effects, she was given the all clear.  She has now been cancer free for 18 months and despite having had to deal with Sepsis, Covid, RSV (a very nasty respiratory virus) and Pneumonia, which led to several hospital admittances, she is now feeling and looking so much better and all her hair has grown back into a curly halo.

Here she is 9 months after her treatment on her 60th birthday with me:-

CAR-T has been approved for NHS use in hundreds of adults per year with blood cancers that have not responded to other treatments.  When she was given it, she’d heard it was costing over £1 million for private patients at that time.  Now I understand the NHS has secured a confidential discount from a list price of nearly £300,000 per patient.

COMMON OR POSSIBLE SIDE EFFECTS

– Very low blood counts for weeks/months which can lead to a higher infection risk, anaemia (tiredness), bleeding/bruising risk<

– Infections (bacterial, viral, fungal) — patients often need preventive antibiotics/antivirals

– Fatigue (can last months)

– Allergic-type reactions during infusion

– Longer-term risks: low antibody levels (hypogammaglobulinemia which can lead to more infections)

– Very small increased risk of new cancers years later

MORE SERIOUS SIDE EFFECTS

CAR-T can be very effective (sometimes putting people into long-term remission when nothing else worked), but it can also cause serious side effects because it revs up the immune system so strongly.  They keep a very close eye on you for the first few days and thankfully for her none of this happened.

The two biggest concerns are:

1. Cytokine Release Syndrome (CRS) – very common (often happens in most patients)
– Basically a massive “immune over-reaction”
– Your activated CAR-T cells release a flood of inflammatory chemicals (cytokines)

Symptoms can range from mild to life-threatening:

High fever, chills, feeling very unwell
Fast heart rate, low blood pressure
Trouble breathing, low oxygen
In severe cases: organ stress (kidneys, heart, lungs)
Usually starts 1–14 days after infusion; most cases are manageable with supportive care + drugs like Tocilizumab or steroids.
Neurotoxicity / ICANS (Immune Effector Cell-Associated Neurotoxicity Syndrome) — happens in 20–50% of patients
Brain-related side effects caused by inflammation affecting the nervous system

Symptoms can include:

Confusion, difficulty speaking or understanding<
Tremors, difficulty writing
Seizures (in more severe cases)
“Word-finding” problems or feeling “spaced out”
Rarely more serious issues like swelling in the brain
Usually appears a bit later than CRS (days 3–10 or so) and often resolves with treatment, though some people have longer-lasting mild cognitive changes (“brain fog”).

Most serious side effects happen in the first 1–4 weeks after infusion, which is why people usually stay in (or very close to) the hospital for 1–4 weeks for close monitoring.

CAR-T has been a game-changer for many patients who had run out of options — but it’s intense treatment that needs to be done in experienced centres with a team ready to manage the side effects quickly.

If you’re asking for yourself or someone close, the doctors will explain how the risk-benefit balance looks for that specific situation and all further details specific to the situation.  We just thought it would be helpful to explain what happened to her.