11 Years with Primary CNS Lymphoma: Relapse After 8 Years, Then Transplant with Residual Disease + CAR-T — A Story of Renewed Life

A Note on Why We Share These Stories

In the GOBROAD patient community, we see many people who are stronger than fate itself — patients and family members alike, gritting their teeth and moving forward beside the hospital bed. People often say "I understand how you feel," but only those who have lived it truly know.

That is why we began recording our patients' stories. Let the detours you have traveled become maps for those who come after you. Let the torch of your spirit become light that illuminates others. Let this unique life experience be seen and written.

Here there are tears, there is laughter, there is despair, and there is rebirth.

Part 1: A "Crooked Smile" Reveals Primary CNS Lymphoma

I am Mr. Jiang. In 2015 I was 51, working in bank administration in Xingtai, Hebei Province. I had always been in good physical condition. That April, at a colleague's dinner gathering, I smiled and they told me my mouth was crooked. My wife rushed me to get it checked out.

In smaller cities, the habit is to find someone you know first. A friend in radiology suggested observing for two days. But I was not reassured — I went to an outpatient clinic on my own, insisted on a surgical consultation, and demanded a CT scan to rule out a stroke. The result showed a mass in the right frontal lobe. I had a cousin who died from a glioblastoma, so my family worried about the psychological burden and told me the tumor was benign — just remove it and I would be fine. At the time I did not think much of it, unaware of the danger, acting only on instinct: go to Beijing for treatment.

We set out from Hebei on Monday, heading straight for Beijing. The disease progressed frighteningly fast — my face changed every day, the droop growing worse. I spent every day in outpatient infusion receiving mannitol to reduce intracranial pressure. After a week of scrambling, I was finally admitted. On April 29 I underwent surgery. The pathology confirmed primary central nervous system diffuse large B-cell lymphoma (PCNSL-DLBCL). During this period I sensed something was wrong and kept pressing my wife and doctors for the results, but my family shielded me from the truth. It was only at discharge that my wife gently broke the news to me: the surgeon had instructed us to seek further chemotherapy. That was the first time I realized: surgery was not the end — the long road of treatment had only just begun.

The outside hospital where I was seen did not have a chemotherapy department. The surgeon gave several recommendations. At that time, I felt that a national-level cancer center must be the most authoritative, so I chose one. Looking back now, seeking medical care cannot depend solely on a hospital's reputation — you have to look at the department, choose the right specialist. Some hospitals are very strong in solid tumors but may not be the best fit for lymphoma. It took me eight years to fully understand that lesson.

I completed 8 cycles of standard chemotherapy. In November 2015, follow-up imaging showed complete response (CR). The favorable results suggested life was slowly returning to normal, but my mind never truly settled. And because my understanding of lymphoma was limited at the time, I did not receive consolidation therapy. From a lifestyle standpoint I made comprehensive changes: I quit alcohol entirely and resumed exercising. At first I could only walk slowly and jog short distances, but gradually I worked up to jogging about 3 kilometers daily at a six-and-a-half-minute pace, and could even do a few pull-ups. My doctor had suggested that after three years I could reduce the frequency of follow-up scans, but I persisted with twice-yearly checks in Beijing. Even during the COVID-19 pandemic, I never skipped a scan, because the original hospital preserved continuous imaging records — before-and-after comparisons hold far more diagnostic value.

Part 2: The "Darkest Hour" — Relapse After 8 Years

In April 2023, I asked my wife to rest at the hotel while I went to collect the MRI report myself. I never expected what happened next: the MRI showed abnormal enhancement — the original lesion had relapsed. It felt like a bucket of ice water poured over my head. I sat stunned on a hospital chair for a full hour, my mind racing: "Why me? Eight years and it still comes back? Even the top-tier hospital could not cure it — this must mean my time is up. I cannot keep treating. I cannot bankrupt my family. What should I write in my will? Remind my wife to live well afterward. Arrange my elder daughter's marriage, my younger daughter's career…" And above all: delay telling my wife this terrible news for as long as possible.

Just as my thoughts were in turmoil, my wife grew worried that I had been gone too long and came to the hospital looking for me. Her first words were: "Why so long? Did you get the MRI? How is it?" I could only respond woodenly: "Waited a bit longer for the results. Let's talk back at the hotel." But she anxiously rummaged through the imaging envelope, and when she saw the report her legs gave way — I caught her just in time. After crying for a while and calming down, she was resolute about continuing treatment, firmly convinced that the right hospital and the right doctor existed to save my life.

We immediately consulted my attending physician. She was equally surprised by such a late relapse and informed us that beds were extremely tight at her hospital — subsequent treatment would need to be transferred to a partner institution. My spirits sank even lower.

Back home, colleagues and friends soon learned my lymphoma had returned. They all said: "Old Jiang probably won't make it this time." I thought the same thing myself: eight years… is this where the road ends?

At that moment, a friend suggested I see Dr. Ke Xiaoyan. At the time Dr. Ke was seeing patients at Beijing GOBROAD Boren Hospital in Fengtai District. I booked an appointment and was admitted to the hematology department.

Part 3: The High-Stakes Decision — "Transplanting with Residual Disease"

Dr. Ke formulated an overall plan: chemotherapy bridging to autologous hematopoietic stem cell transplantation. I completed five cycles of chemotherapy, but the situation was not optimistic: after the fourth cycle, MRI showed three metastatic lesions in the brain ventricles; after more chemotherapy, they reduced to one — but it simply would not disappear. My condition fell short of standard transplant eligibility. After conferring with the ward physician, both Dr. Ke and the team referred me for a consultation with Dr. Hu Kai.

At my first appointment with Dr. Hu, we spread out all the films and the entire thick stack of medical records before him. He carefully reviewed each image while asking about my illness. After more than half an hour of thorough discussion, he laid out the situation in detail:

Only then did I understand why the outside hospital had referred me to Dr. Hu. This approach — transplanting with residual disease — is something only a handful of teams in China can or dare to attempt. Dr. Hu's decision was not reckless bravado; it was the product of genuine expertise — he knew exactly where the risks lay and how to manage them. The plan was clear, every angle considered. That consultation gave me far more than a treatment protocol — it gave me the confidence, strength, and courage to continue. I began to truly believe that I could survive this recurrence too.

Part 4: The 21-Day Transplant Ordeal — A Battle with Oneself

Once the decision was made, Dr. Hu wrote the orders and I began the transplant process. On September 18, I entered the sterile unit. Seeing the cramped space inside, I decided my wife should not have to sleep on a small folding bed — and the doctors said an extra person meant extra infection risk — so I hired no caregiver and managed everything alone.

When I could not eat, I remembered the doctor's instruction: "Treat eating as part of your treatment." Even if I could only manage a few bites, I pushed myself to persist.

The hardest moments in the unit: eight bowel movements a day. Each time, I had to disinfect the perianal area. Oral care, urethral care — daily rituals. The nurses offered to help, but I was too embarrassed and asked them to guide me via the monitoring camera instead. Thanks to that diligence, no perianal infection developed, my oral mucosa stayed intact, my conjunctivae remained clear — I got through it all.

Twenty-one days later I finally emerged from the unit — wheeled out in a wheelchair, not a shred of strength in my body. But I knew I had survived the hardest trial.

Part 5: Wherever Dr. Hu Goes, I Follow

After discharge, following Dr. Hu's plan, I allowed time to recover. In November I received CAR-T consolidation therapy. Everything went smoothly — apart from one day of low-grade fever, there were virtually no side effects. Post-CAR-T scans showed CR once again.

This second CR felt profoundly different from the first. After the first CR, I lived in constant dread of relapse, treading as if on thin ice. After the second CR, my mindset steadied. Having endured so much, I understood the nature of lymphoma far better, and with a top-tier specialist like Dr. Hu providing ongoing disease management, I finally had a guiding "lighthouse" on the road to recovery.

From late 2023 to now, I have followed medical advice for all follow-up visits — initially every three months, then every six months. In the blink of an eye, nearly three more years have passed.

Now Dr. Hu has transferred to Beijing GOBROAD Hospital in Changping District. My wife and I stay near Beijing South Station each time we come to the city. Taking the subway from Jimiao requires three transfers and over an hour to reach Changping — yet I still make the trip. A taxi ride costs around 130 yuan without traffic, 160 yuan when congested — I accept that too. Because only when I see him, only when I hear him say "Looking good, just focus on preventing infections in daily life," do I feel true peace of mind.

Why do I trust him so completely? Because he possesses not only superb clinical skill and a sense of responsibility toward his patients, but also extraordinary patience and attentiveness. In my heart, Dr. Hu represents the highest standard of medical ethics and expertise. From his patient explanations in outpatient consultations, to nearly daily bedside rounds during hospitalization, to his guidance during recovery — he never shortcuts anything with his patients. From Dr. Zheng at GOBROAD Boren to Dr. Ma and Dr. Lei at Beijing GOBROAD Hospital, the entire team moves alongside each patient's disease course. Dr. Hu Kai and his team form a continuum of care spanning treatment planning, hospitalization, rehabilitation, and follow-up — making me know that I am not simply sent home after treatment ends, but that someone is always watching for risks and responding to questions. Meeting such an expert, such a team, has been the great fortune of my life.

Part 6: Illness Taught Me to Understand Love — Both Giving and Receiving

First and foremost, I want to thank my wife. Across these eleven years, she has accompanied me to every consultation, every treatment session, every follow-up scan. She supervised my medications and managed my recovery with meticulous care. She appears gentle, and she too feels fear when bad news arrives — yet she always stands up faster than I do. When things get serious, her fundamental character is resilience. From shielding me from the truth at the first diagnosis, to reaching out everywhere after relapse — contacting patient organizations, seeking out specialized experts — she has propelled me forward with a love that borders on stubbornness, never uttering the word "give up."

I also want to thank every doctor and nurse along this treatment path. Long hospital stays have shown me firsthand how hard healthcare professionals work, and I have come to understand that medicine is not omnipotent. We patients, our families, and our doctors and nurses are not standing on opposite sides — we are partners in the same trench. The medical profession deserves greater support and respect from society.

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If you or a loved one is facing a similar diagnosis and would like to explore advanced treatment options at GOBROAD hospitals — including CAR-T therapy, stem cell transplantation, or second opinions from specialists like Dr. Hu Kai — please contact us. We strictly protect your personal information in accordance with applicable regulations.