Patients' treatment experiences in China

Diagnosis and previous treatment

In spring 2025, Michael underwent chest imaging for persistent chest and shoulder pain and was subsequently diagnosed with non-Hodgkin lymphoma. Public fundraising information from family and friends further identified the subtype as primary mediastinal large B-cell lymphoma (PMBCL).

After six chemotherapy courses, the chest tumour enlarged again and liver and bone involvement appeared. Radiotherapy and immunotherapy followed, but he still needed new treatment options.

Why he considered CAR-T overseas

He twice waited for a New Zealand CAR-T trial: once, rapid progression required immediate treatment in Auckland; on another occasion, substantial fluid accumulated in his lungs and around his heart before enrolment. Subsequent alternative immunotherapy also affected trial eligibility. His decision to travel to China therefore involved timely access as well as costs.

After comparing options in the United States, India and Australia, he held a video consultation with Shanghai SinoUnited Hospital haematologist Lily Zhou. Family and friends then helped raise funds for treatment and living expenses abroad.

Treatment and admission in China

A family and friends update on 26 June 2026 confirmed his arrival in China and the start of his Shanghai CAR-T care journey. Treatment at Shanghai SinoUnited Hospital used his own T cells, modified and expanded outside the body before reinfusion.

An update on 12 August recorded complications around treatment and a lengthy admission. He was nearing treatment completion and awaiting the first scan. In Shanghai, he continued inpatient monitoring and recovery care.

Costs and cross-border arrangements

His Shanghai treatment spending was less than half the Australian quote he had obtained. Family and friends helped raise treatment and living costs and continued funding extended admission, accommodation, transport and recovery after arrival.

Complete remission and plans to return home

On 18 August 2026, he learned that his lymphoma was in complete remission. In a public September interview, he hoped to return to Auckland and resume work and daily life.

Diagnosis and three autologous transplants

In 2018, Amanda was admitted with pneumonia and anaemia, subsequently developed respiratory failure and briefly needed ventilator support. Further tests diagnosed multiple myeloma with adverse genetic changes.

She had two consecutive autologous stem cell transplants in 2019, followed by lenalidomide maintenance and about two years of remission. After relapse, she received daratumumab and carfilzomib. A third autologous transplant followed in 2023; further carfilzomib kept the disease stable until mid-2025. Her own account also noted resistance to bortezomib, lenalidomide and cyclophosphamide.

Assessment and contact before travelling to China

On relapsing again in 2025, she did not meet eligibility for the CAR-T trials then open in Australia. After reading research, she contacted a New Zealand patient previously treated in Shanghai to understand the actual care experience and obtain the Shanghai doctor's contact.

Her Australian haematologist spoke with a New Zealand colleague, and she submitted an enquiry to the Shanghai team. Her disease burden was low at the time; she decided to travel after discussion with doctors. A friend accompanied her first, and her husband later travelled to Shanghai to take over caregiving.

Treatment in China: tests, cell collection and infusion

After arrival, she completed blood tests, imaging and a bone marrow biopsy. Her own T cells were collected through central venous access and sent to Beijing for manufacture. She then received lymphodepleting chemotherapy, a preparatory treatment reducing some lymphocytes before infusion, followed by BCMA/GPRC5D dual-target CAR-T.

She stayed in hospital for about two weeks after infusion and spent seven weeks in China overall. Those seven weeks included assessment, waiting for cell manufacture, treatment and recovery.

Adverse reactions and caregiving

She developed mild cytokine release syndrome (CRS), an inflammatory reaction that can follow CAR-T activation of the immune system. After discharge, a viral respiratory infection required readmission.

She particularly noted that bathing and other daily care, and emotional support, at her hospital mainly depended on herself and her caregivers. Her friend and husband accompanied her in turns, helping with daily care during admission and recovery.

Australian follow-up and interim outcomes

Bone marrow testing before departure found no myeloma cells. Her May 2026 account recorded that paraprotein remained low and continued to fall after returning to Australia. She received no further anticancer myeloma treatment, but had monthly intravenous immunoglobulin (IVIG) support.

In a BBC interview published on 30 June, she further reported complete remission. A Brisbane haematology team took over care after her return while she continued contact with the Shanghai team to connect subsequent care.

Previous treatment and local recurrence

Sergey (a pseudonym) was a 34-year-old Russian physics professor. In October 2025 he developed enlarged lymph nodes, nasal obstruction, headache and painful swallowing. Excision biopsy of a left supraclavicular lymph node in November diagnosed advanced small cell carcinoma of the maxillary sinus.

PET/CT subsequently showed cervical and supraclavicular lymph node involvement. During seven courses of chemotherapy and immunotherapy, the first two treatments briefly reduced pain and facial swelling before efficacy declined. April 2026 reassessment found recurrence in the left maxillary sinus and right cervical lymph nodes.

Remote consultation before travelling to China

After learning about BNCT through a Russian patient support community, he contacted Panboron (Hainan) BNCT Hospital. The team first consulted online and reviewed records, assessed local maxillary sinus recurrence without detected distant metastases, and proposed a treatment strategy.

The team arranged local treatment of the left maxillary sinus lesion separately from subsequent treatment of the right cervical lymph node lesion.

Treatment in China: assessment and BNCT irradiation

He arrived in Haikou on 17 May 2026 and attended the hospital on 18 May. Wang Enmin's team developed an individual plan. On 20 May, after intravenous boron medicine and simulation with positioning adjustments, neutron irradiation was delivered to the left maxillary sinus lesion.

Treatment lasted about 30 minutes, followed by hospital observation.

Observation, discharge and subsequent plans

No obvious serious adverse reactions appeared in the short term. In an interview the following day, he reported feeling physically and emotionally better than before treatment. He was discharged after observation and planned to return to Russia on the fourth day after treatment.

Doctors proposed considering subsequent BNCT for the recurrent right cervical lymph node lesion alongside systemic treatment.

Diagnosis, relapse and treatment choice

Aunt Chen was diagnosed with diffuse large B-cell lymphoma in July 2019. She relapsed after first-line treatment, responded poorly to second-line treatment and had a TP53 mutation. After axicabtagene ciloleucel approval in 2021, she received this commercial CAR-T treatment at Ruijin Hospital.

Treatment and infusion in China

The cell collection treatment process began in June 2021, and CAR-T infusion was completed on 2 August. The product was axicabtagene ciloleucel (Yikaida).

She briefly developed fever during treatment, with temperature falling after medicines.

Published successive response assessments

Imaging on day 28 after infusion showed tumour control; three- and six-month assessments still showed complete remission. At June 2022 follow-up, she had been unable to attend the planned nine-month visit because of the Shanghai outbreak and planned an August visit.

August 2022 follow-up confirmed complete remission at the one-year assessment. School of Medicine information in October 2023 again recorded completion of the two-year assessment, still in complete remission.

Follow-up support after treatment

The Ruijin team set up dedicated and online clinics for CAR-T patients, with individual follow-up handbooks and healthcare staff contacts to monitor health changes and reassessment results. Aunt Chen completed repeated response assessments after infusion and remained in complete remission at two years.

Four previous treatment lines and other illnesses

Daniel was an American patient in his seventies with advanced non-small cell lung cancer and Parkinson's disease. After standard treatment at MD Anderson Cancer Center, third-line treatment failed and fourth-line treatment also did not control progression.

In November 2025, his doctor suggested considering the Chinese-developed ivonescimab.

International video consultation and admission arrangements

His two children, both doctors, contacted several institutions before Jiahui International Cancer Center. The initial consultation involved an oncologist, clinical pharmacist and case managers to assess medicine options and subsequent care arrangements.

The English hospital account states that a late-November video consultation was arranged within one week of first contact. The Chinese account says visas, travel and initiation of inpatient treatment were completed just over a week after the first video consultation.

Treatment in China and ICU care

After admission, he received ivonescimab to control the disease. Critical immune-related adverse reactions required ICU transfer. Oncology, neurology and intensive care teams managed them together, inviting lung cancer expert and principal ivonescimab investigator Zhou Caicun to advise.

Once stable, he returned to an ordinary ward for continued treatment.

Parkinson's disease, rehabilitation and overseas family communication

Neurology also adjusted Parkinson's medicines, assessed fall risk and arranged rehabilitation. Care involved other illness management and daily function as well as lung cancer medicines.

When his children could not accompany him throughout, the team regularly updated family in the United States, arranged video consultations and brought other specialties into discussions as needed, allowing continued family participation in treatment decisions.

Interim outcomes and continuing treatment

An early-March 2026 English hospital account described stable disease after about two months of treatment, with ongoing care and follow-up. A 14 March interview further recorded discharge for follow-up.

Symptoms and difficulties obtaining local care

Mr HO (a pseudonym) was a 68-year-old Malaysian. Repeated abdominal distension, pain, nausea and vomiting over one month accompanied a 9 kg weight loss. Local tests suspected an intestinal malignancy and also found a transverse colon adenoma, abdominal wall hernia and adhesions.

He had hypertension and a cardiac stent history. His local hospital considered combined management difficult and surgical risk high. He searched gastrointestinal surgery information online and decided to seek care at Shenzhen Hospital of Southern Medical University.

Record review and multidisciplinary assessment in China

After accepting the case, Wang Yong's gastrointestinal surgery team organised overseas records and reports and completed pre-operative assessment. Considering cardiovascular health, adhesions and the hernia, multidisciplinary discussion selected one combined laparoscopic operation to avoid repeated trauma from multiple operations.

Venous thromboembolism (VTE) risk, perioperative anticoagulation, pain relief and nutrition were assessed separately before surgery.

Treatment in China: three procedures in one operation

One laparoscopic operation completed sigmoid colon tumour resection, abdominal adhesiolysis and abdominal wall hernia repair. It addressed three problems in one operation, was completed successfully and left small abdominal incisions.

Post-operative monitoring and cross-border communication

The team made repeated post-operative rounds to monitor vital signs, abdominal drainage and passage of wind and stools, while managing hypertension and coronary heart disease and adjusting pain relief, anti-infective and nutritional support. The international department provided record translation and multilingual communication and explained diet, activity and reassessment.

Bowel function gradually recovered, and the abdominal pain persisting for a month resolved. At discharge, he presented a banner to the healthcare team.