Michael’s story — CAR T-cell therapy for PMBCL

Michael was living an ordinary life in New Zealand — going to the gym, seeing his friends, enjoying himself — when a pain in his shoulder and chest took him to the doctor. He asked for a scan. It found a 10-centimeter tumor in his chest.

The diagnosis, and what came before CAR-T

A CT scan and further tests followed, and within about a week he was diagnosed with primary mediastinal large B-cell lymphoma (PMBCL), a type of non-Hodgkin lymphoma. He started chemotherapy roughly a week after that.

He had six rounds of chemotherapy in New Zealand, which, in his words, failed. Ten rounds of radiotherapy came next, then immunotherapy, a further course of radiotherapy, and a further course of immunotherapy.

The trial he could not join

CAR T-cell therapy had been the plan all along. Michael already knew about it, and had been due to join a CAR-T trial in New Zealand. Trials set very specific requirements, and a patient who does not meet them cannot take part. In the end, he was not able to.

Around Christmas he was very unwell, and the lymphoma was spreading. Outside the trial, CAR T-cell therapy was not available to him in New Zealand.

A fundraiser his friends ran for him

That was when Michael and his friends sat down together and agreed they had to do something. Looking at options overseas, they expected the cost to be far beyond anything he could pay himself, so they started a Givealittle fundraiser.

He was too unwell to run it. He was in hospital for a long time, and told his friends he was too tired to do it himself — if they wanted to help, this was how. They stepped in. Many of the fundraising videos were made by his friends, because he could not make them.

How the decision was made

When they started, they had not yet decided where he would go. With the fundraiser about halfway to its goal, Michael got in touch with Dr. Lily Zhou and SinoUnited Health. Reaching the goal suddenly felt possible — and with help from friends, family and a great many people he had never met, they got there. He is grateful to all of them.

What the process involved

Michael is clear that CAR T-cell therapy is not a single event where your cells are taken out, put back in, and that is the end of it. He describes it as several parts that have to come together: treatment beforehand, the collection of his T-cells, bridging treatment while his cells were being prepared, and then the infusion.

Having already been through some of the toughest chemotherapy, he found this part comparatively easy. For him it was “just normal” — “it was boring, which is good.” He describes about two weeks of feeling rough before slowly starting to feel better.

What Michael would say to someone at the same point

He thinks other people in his position, considering CAR T-cell therapy, are probably scared — as he was. His advice to anyone who wants CAR T-cell therapy and cannot easily get it in their own country is direct: do it. He says that when he arrived, he felt he could almost relax, because he felt safe.

He recorded a short message the day his scan results came back, thanking the SinoUnited Health staff, his doctors and nurses, and Dr. Zhou in particular — “even the cleaning ladies.”