Last time I wrote for North East Bylines I had just completed six rounds of chemotherapy for Non-Hodgkins’ lymphoma here in Dublin and I was waiting for results. In June of 2023 I was told that there had been ‘minimal response’ to the chemotherapy and the tumours were still life-threatening. My consultant outlined a number of possible ways forward, but by far his favourite option was CAR-T therapy. It’s a relatively new immunotherapy that has only been available for a few years. St James’ hospital in Dublin has been offering it since December 2021. Prior to that, Irish patients had to spend a month in England to access this treatment. I was the 43rd patient treated in the Republic. There is still only one centre offering these therapies, although the plan is to establish another one in Galway. It’s been held up due to an HSE hiring freeze. Meanwhile, patients and their carers from more distant parts of the country have to find accommodation in Dublin for a month. There are at least ten CAR-T centres in the UK.
CAR-T
Clinically I was a good candidate for CAR-T, but it is very expensive, so the Irish Health Services Executive insists it is only used as a third line therapy; in other words, after two other conventional treatments have failed. I’d only failed one, so I was first subjected to a different type of chemotherapy, which my doctors did not expect to work, in order to jump through the financial hoops and access CAR-T. I wonder about the ethics of exposing patients to this delay and to an ineffective treatment with all its attendant side effects, especially as it would be my insurance company, and not the HSE, that would cough up the money for CAR-T. In the UK, this barrier has already been reduced and I would have been eligible after my first failed course of treatment.
CAR-T involves taking some of a patient’s own white blood cells, the T cells, out of the body and sending them away to a manufacturing facility to have a cancer-detecting protein added to their surface. These cells are then grown in cell culture to multiply their numbers, and then infused back into the patient, where, armed with the new surface protein, they roam around the bloodstream, finding and attacking cancer cells. Even though I’d spent my career in biotechnology, this seemed far-fetched. Surely the toxic chemical drugs used in chemotherapy must be more potent than a few delicate blood cells?
On a sunny day in August I went to St James’ hospital, at the other end of Dublin, to have my cells collected. The single worst thing that happened to me during my whole cancer ‘journey’ was the insertion of a plastic catheter into my jugular vein. This happened in an X-ray suite under local anaesthetic. My head was turned to one side and a green towel thrown over my face. Then a senior doctor started instructing a more junior one how to get the wretched thing into my vein. It wasn’t painful but there was a lot of alarming tugging and pushing. When I whimpered, they apologised and said my jugular vein was very deep. I think they were accusing me of having a fat neck. Once they had the catheter in place I was moved to the apheresis suite for my blood to be pumped out into a fridge-sized cabinet, the T cells separated out, and the rest of the blood returned. This took several hours, and the first machine they hooked me up to kept breaking down. There was a hard stop at 4.30pm when the courier was due to collect the T cells. If enough hadn’t been collected by then, perhaps I would have to go through all this again another day? But they managed. The cells went off to the Netherlands in a polystyrene box, the catheter was pulled out of my neck with a lot less effort than it took to get it in, and I went home.
During the course of that summer I was in and out of hospital a lot with abdominal pain and fever. As the medical team can’t differentiate between a high temperature caused by cancer and one caused by sepsis, every time my temperature went up I was taken in as an inpatient and thrown on to a general ward. These were every bit as chaotic as anything within the NHS. Ireland also has a shortage of doctors and nursing staff, and sometimes not enough beds. Just as in the UK, the health service relies on foreign staff. I was treated by mostly Filipina and Indian nurses, and I met a couple of British doctors too.
At the end of September my T cells had returned from the Netherlands and I was admitted for a three-week stay isolated in a single room. Thank goodness for my iPad, for books and TV streaming. I would have gone a bit crazy without them.
On 3 October my T cells were re-infused. My small room was full; there was a nurse with the drip stand, the senior nurse logging the procedure with a computer on a trolley, and a lab technician with the cells in a huge metal flask of liquid nitrogen and a water bath to thaw them. The infusion took fifteen minutes. And then… nothing.
I waited in the isolation room for five days feeling fairly normal. As one of the potential side effects of the treatment is inflammation of the brain, a technician with a mobile electroencephalogram came in every few days and wired up my still bald head with electrodes to check my brain function. Twice a day the nurses asked me what I called ‘the dementia questions’; What city are we in? What day is it? What month is it? Every day they asked me to write a few short sentences and sign my name, to see if my handwriting had deteriorated.
On the sixth day, they got what they were hoping for; my temperature spiked and my writing got shaky, although I always did ok with the questions. This mild ‘cytokine release syndrome’ is apparently a hopeful sign that the treatment is working.
Three and a half weeks after admission I was allowed home. I wasn’t allowed to drive for eight weeks because of the risk of seizures and I needed to be careful not to catch any infections, so I hung around at home. A month after my treatment I had another PET scan to see if the lymphomas were still there.
On the day I got my results, my husband had to travel on business, so his Irish cousin gave me a lift to the hospital. His wife was also in the car and I told her she had a funny idea of a good day out. They waited in the hospital coffee bar while I saw the consultant. I struggled to believe what he showed me on the scan – all the huge black blobs of lymphoma that had been cluttering up my abdomen in September had now completely vanished.
Since then I’ve had further scans at one, three, six and twelve months, and they have all remained negative for lymphoma. CAR-T therapy is rather like sorcery, and so it should be for the price. It is rumoured to cost €320,000 (£266,000) and that’s just the cost of the cells, not including the scans and the hospital stay. As the costs were arranged between the hospital and the insurers, I didn’t ever see the bills.
Cancer Thrive and Survive
One of the things the HSE does for us cancer survivors is series of six ‘Cancer Thrive and Survive’ sessions which brings patients in remission together to discuss how they feel after treatment and how to live a healthy and relatively normal life. We all agreed that the fear of cancer coming back never really leaves you. Every abdominal twinge and ache makes me worry, but the scans tell the story. My Cancer Thrive and Survive gang still meets for coffee every few weeks at a shopping centre near the Beaumont hospital in Dublin’s Northside. We’re lucky to be here.
I obviously haven’t had a similar treatment in the UK, but I’m in a Facebook group where British patients share their experiences and I think sometimes it takes longer to get results back in the UK. Here in Ireland every time I’ve had a PET scan I’ve been seen in a matter of a few days to discuss the results. Treatment here has not been perfect, but in general it has been efficient, quick and effective. When discussing the future of the NHS, everyone compares it to the American model which could bankrupt you if your insurance won’t cover your treatment. In Ireland, as in many other European countries, that can’t happen. Insurance-based models can deliver the results, but it’s instructive that Ireland is trying to reduce direct costs to the patient. There is a feeling that some people may be deterred from seeing their GP because of the upfront costs.
So now, a full year after my life-saving treatment, I’m starting to do more here in Ireland. I’m doing Reform Pilates to try to get some fitness back. I’ve joined a writers’ group, and I’m writing again. I’m turning my mind to everything else going on in Ireland that I might tell you about. We’ve got a General Election coming.
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