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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.
A written revaccination schedule. The single most useful item. A transplant removes the protection from a lifetime of vaccination; published schedules exist to rebuild it, the vaccines are free at the point of use in the NHS, and the usual failure is that neither the transplant centre nor general practice owns the plan. Ask who owns it and ask for it on paper. If you are receiving immunoglobulin replacement, the two schedules need coordinating.
A survivorship care plan. What you had, in what doses, what the specific risks are, which tests are due and at what interval, and who to contact. The international screening recommendations are the template.
Spirometry on a schedule. Bronchiolitis obliterans syndrome after an allogeneic transplant is silent until a great deal of lung function has gone and nothing recovers it once the airways have scarred. Breathing tests find it while it can still be slowed.
A ferritin, after the first year. Transfusional iron loading is common, it is measured by a cheap blood test, and once the graft is working it can be removed by venesection.
A bone density scan, and an MRI if a hip hurts. Bone loss is fastest in the first year and corticosteroids drive it. Avascular necrosis does not show on an early plain radiograph, so hip or groin pain on weight-bearing after steroid exposure needs an MRI rather than reassurance.
An eye test, and a named ophthalmologist if there is ocular GvHD. Cataract after total body irradiation is common and is corrected by surgery. Ocular GvHD needs more than artificial tears, and a general dry eye clinic may not reach for serum drops or scleral lenses.
Thyroid, lipids, glucose and blood pressure. Conventional cardiovascular risk factors keep their full predictive power in transplant survivors and add to the treatment-related risk, so they are worth treating here at least as hard as in anyone else. Body mass index will not show the change in body composition; the blood tests will.
A skin and mouth examination, every year. Second cancers after allogeneic transplant run at about twice the expected rate, rising to about threefold by fifteen years, and the excess is concentrated in squamous cancers of skin and mouth in people with chronic GvHD. Sun protection and not smoking do more here than almost anywhere else.
A conversation about fertility, before conditioning, not after. Everything that preserves fertility happens before treatment starts. If treatment has already happened, ask about hormone replacement, which treats the bone and cardiovascular consequences of gonadal failure as well as the symptoms.
A genital examination, and permission to raise sexual function. Genital chronic GvHD is the manifestation most often missed, because it is rarely examined for unless asked about.
Psychological support, without having to justify it. Nearly half of long-term CAR-T survivors in the best study reported at least one clinically meaningful cognitive, anxiety or depressive difficulty, and prior anxiety or depression was the strongest predictor.
If you had a gene-modified cell product, stay in the long-term follow-up. Fifteen years is the recommended duration for integrating vectors. It is a long time and it is the only way the late safety question gets answered, for you and for the people treated after you.
And one thing not to do. Nothing sold as an immune-boosting or regenerative infusion, injection or supplement has been shown to speed immune reconstitution or reverse any late effect on this page. The frontier records elsewhere on this front grade those claims one by one. The items above are the ones with evidence, and they are free or nearly free.
The late effects of transplant and cell therapy are numerous, individually uncommon and spread across many specialties, so no single clinician encounters enough of any one of them to catch it reliably by pattern recognition. Surveillance therefore has to be scheduled rather than reactive, and the schedule has to be held by someone. Giving the schedule to the person it concerns is the most robust available arrangement, because they are the only participant guaranteed to be present at every stage.
Query for this technology: (TITLE:"After a transplant or cell therapy: what to ask for" OR ABSTRACT:"After a transplant or cell therapy: what to ask for" OR TITLE:"transplant survivorship checklist" OR ABSTRACT:"transplant survivorship checklist" OR TITLE:"questions after transplant" OR ABSTRACT:"questions after transplant" OR TITLE:"post-transplant follow-up checklist" OR ABSTRACT:"post-transplant follow-up checklist") AND (cancer OR tumor OR tumour OR oncology OR carcinoma OR lymphoma OR leukemia OR leukaemia OR myeloma OR sarcoma OR melanoma OR glioma). Results are unfiltered search hits about After a transplant or cell therapy: what to ask for, not a curated reading list.
Shares Quality of life after transplant and cell therapy, Who is supposed to be watching: EBMT, CIBMTR, FACT-JACIE, and what a survivor is actually offered, Late effects after a stem cell transplant, Survivorship care and late-effects surveillance and the tags rejuvenation, survivorship, transplant, follow-up.
Shares Hormones, metabolism and the heart after transplant, Fertility, growth and what total body irradiation costs, Oncofertility and fertility preservation, Survivorship care and late-effects surveillance and the tags rejuvenation, survivorship.
Shares ICANS, and whether thinking recovers after CAR-T, Quality of life after transplant and cell therapy, Quality of life, Survivorship care and late-effects surveillance and the tags rejuvenation, survivorship.
Shares Chronic GvHD organ by organ: skin, mouth, eyes, gut, liver, joints and genital tract, Fertility, growth and what total body irradiation costs, Survivorship care and late-effects surveillance, Late effects and survivorship toxicity and the tags rejuvenation, survivorship.
Shares Quality of life after transplant and cell therapy, Quality of life, Survivorship care and late-effects surveillance, Late effects and survivorship toxicity and the tags rejuvenation, survivorship.
Shares B-cell aplasia and low antibodies after CAR-T and bispecifics, and immunoglobulin replacement, Rebuilding the immune system after treatment, Rebuilding an immune system: the timeline, lineage by lineage, Infection risk after transplant and cell therapy, phase by phase, and the prophylaxis that follows it and the tags rejuvenation, survivorship.
Shares Hormones, metabolism and the heart after transplant, Quality of life after transplant and cell therapy, Quality of life, Survivorship care and late-effects surveillance and the tags rejuvenation, survivorship.
Shares Revaccination after transplant: the schedules, and where the UK and the US differ, Who is supposed to be watching: EBMT, CIBMTR, FACT-JACIE, and what a survivor is actually offered, Survivorship care and late-effects surveillance and the tags rejuvenation, survivorship, follow-up.