transplant

The things worth asking a transplant team for, in one place: who follows you up and for how long, which screens are due at which year, what immunisations you need and when, and who to ring when something changes.

Three more drugs are licensed for chronic GvHD that has not responded to earlier treatment. Their response rates look high, between half and three quarters, but they come from trials with no comparison group. Ibrutinib is the cautionary case: it looked good in a single-arm study and then did not beat prednisone alone when tested against placebo.

The gap after a transplant is not that nobody knows what should be checked, it is that no mechanism tells an individual survivor what is due. This trial tests an organised four-step late-effects service against usual care.

The UK stem cell register, founded in 1974, and the charity behind the clinical nurse specialists who look after transplant patients in NHS centres.

Treatments aimed at a protein on B cells cannot tell a cancerous B cell from a healthy one, so they remove both, antibody levels fall and infections become more frequent. The fix is to give the antibodies back every few weeks. In one myeloma study, serious infections were ten times less frequent while people were receiving immunoglobulin.

After CAR-T the blood counts often take much longer to recover than after ordinary chemotherapy, and in some people they dip again weeks later after appearing to have recovered. Since 2023 this has had a name, ICAHT, and an agreed grading system, which matters because it means it is measured and reported rather than described loosely.

Four problems that turn up years later and are easy to miss because each belongs to a different specialty: bone that thins or, less often, dies at the hip; cataract, which is common after total body irradiation and is fixed by an operation; kidney function that drifts down; and lungs that stiffen rather than obstruct. Each has a cheap test.

After a donor transplant the new immune system can treat the body it has landed in as foreign. When that goes on past the first few months it is called chronic graft-versus-host disease, and it affects roughly four in ten adults. It is treatable and often improves, and the same donor immunity also keeps the leukaemia away, so the aim is to control it rather than abolish it.

Chronic GvHD is a pattern of injuries that can appear in several places at once: skin that thickens, a dry sore mouth, dry painful eyes, difficulty swallowing, abnormal liver tests, stiff joints, genital narrowing. Several of the best treatments are local rather than systemic. The eye and genital problems are the ones least often raised.

Blood is taken out through a machine, the white cells are treated with a light-sensitive drug and ultraviolet light, and given back. It is used for GvHD that steroids have not controlled, mainly skin and mouth, and it spares people more immunosuppression. Improvement builds over months, so it means two sessions a week for a long time.

Transplant conditioning, and total body irradiation in particular, usually ends natural fertility and in children slows growth. The decisions that preserve the most are made before conditioning starts. A randomised trial in children with leukaemia tested replacing the radiation with chemotherapy and found the radiation worked better.

Transplant conditioning can leave the thyroid underactive, the ovaries or testes not working, and the handling of sugar and fat altered in a way that raises heart risk years later. Much of this is treatable with ordinary medicine, and the familiar things about weight, exercise and smoking matter more here than usual, not less.

There is an agreed way to say how bad chronic GvHD is, and every trial, drug label and treatment decision uses it. Each affected organ scores 0 to 3, and the pattern gives an overall verdict of mild, moderate or severe. Worth asking: which organs are scored, what each score is, and what the global severity is.

CAR-T can cause a short-lived brain disturbance in the first weeks: confusion, trouble finding words, tremor, sometimes seizures. It almost always resolves. Afterwards, measured outcomes for most people are close to the general population, while a substantial minority report trouble with memory or concentration.

Which infections threaten someone after a transplant depends almost entirely on how long it has been, because the immune system returns in a known order: bacteria and fungi first, viruses such as cytomegalovirus in the middle months, encapsulated bacteria later. The preventive medicines are matched to those phases.

Every unit of red cells carries iron the body cannot excrete, and someone who has been through leukaemia treatment may have had dozens. It settles in the liver and sometimes the heart. A blood test finds it and an MRI confirms it, and it can be removed either by a chelating drug or by taking blood off once the marrow is working again.

There are now around half a million people alive worldwide who have had a blood or marrow transplant. Most of them have at least one lasting health problem from it, and many have several. The list is long and reads heavily, but almost every item on it is either preventable or detectable early, which is the reason to know what is on it rather than to avoid knowing.

If you were given a treatment in which your own cells were genetically modified, you are expected to be followed up for fifteen years. Not because something is known to go wrong, but because the gene is inserted permanently and the only honest way to find out what happens over a lifetime is to look.

French haematologist whose trials established autologous stem-cell transplantation for myeloma in the 1990s and, in IFM 2009, showed that transplant still adds benefit in the era of lenalidomide, bortezomib and dexamethasone.

Led PERSEUS, which established daratumumab-VRd as the standard for transplant-eligible myeloma.

Every donor transplant includes drugs to stop the new immune system attacking the body. A randomised trial in 2023 changed the usual choice: cyclophosphamide after the transplant, with tacrolimus and mycophenolate, worked better than the older combination. Prevention is not free, because the same drugs hold back the response to infection.

Most people who come through a transplant or CAR-T report, years later, a quality of life close to that of people who never had one. Underneath that, a substantial minority live with fatigue, anxiety, low mood or trouble concentrating, and the strongest predictor is having had anxiety or depression before treatment, which is treatable.

After a transplant the immune system comes back in a fixed order, and the order explains most of what follows. Neutrophils in two to four weeks, natural killer cells within a month, B cells over several months to a year, and T cells last and slowest. Adults rebuild a narrower repertoire, because the thymus shrinks with age.

A transplant erases the protection built up by a lifetime of vaccinations, including childhood ones, and it has to be rebuilt. Published schedules exist, the vaccines are free at the point of use in the NHS, and the usual failure is that nobody writes the plan down. If you have had a transplant and have no written schedule, ask for one.

People who have had a donor transplant develop new, unrelated cancers about twice as often as people of the same age, and by fifteen years about three times as often. Radiation in the conditioning matters most for those irradiated young, and chronic GvHD raises squamous cancers of skin and mouth. Both point at lifelong screening.

In 2024 the US regulator added a warning to every approved CAR-T product about T-cell cancers after treatment. It says the risk applies to the class, that these can appear within weeks, and that patients should be monitored for life. It does not say CAR-T causes most of them, and published series find them very rare.

If you are alive and free of disease two years after a donor transplant, around nine in ten are alive five years later and 85 per cent at ten years. The death rate among transplant survivors stays higher than in people of the same age who never had one, for many years. The two things that matter most are age and chronic graft-versus-host disease.

The smallest airways in the lung can scar shut after a donor transplant. It is the form of chronic GvHD that changes the outlook most, and it is usually silent until a lot of lung function has gone. It is found by breathing tests on a schedule rather than by waiting for breathlessness, so asking for spirometry is worth doing.

First treatment for graft-versus-host disease is steroids, and in about half of people with chronic disease they do not work or cannot be reduced. Ruxolitinib is the only drug that has beaten the alternatives in a randomised trial here, and it has done so twice. About half of people respond; the common problems are low platelets and low haemoglobin.

There is an agreed international list of what should be checked in someone who has had a transplant, and how often, and an accreditation system that centres are inspected against. What there is much less of is a guarantee that any individual survivor is receiving the checks. Knowing the list exists lets a person ask for it.