Seven-Year Anti-Cancer Journey: From Myelodysplastic Syndrome to Acute Myeloid Leukemia, A Second-Time Mom Finally Greets the Dawn of Life
- Elva Chen
- 2 days ago
- 8 min read
In April 2019, Awen, who had just turned 30 and become a second-time mom only a year earlier, was diagnosed with Myelodysplastic Syndrome (MDS). She traveled from Xinjiang to Tianjin and Beijing for medical treatment, then chose traditional Chinese medicine (TCM) therapy at a TCM hospital, and her condition remained stable for nearly two years. However, in October 2021, her condition deteriorated sharply and progressed to Acute Myeloid Leukemia (AML). After chemotherapy at a hospital in Beijing, she underwent an unrelated hematopoietic stem cell transplantation (HSCT) in March 2022. Severe rejection occurred after the operation, making the treatment extremely difficult. Only a year later, tumor cells reappeared. Over the next six months, through chemotherapy and donor lymphocyte infusion (DLI), her condition stabilized temporarily. Regrettably, at the end of 2023, her condition relapsed comprehensively.
A turning point came after the 2024 Spring Festival—Awen sought help from the transplant team led by Director Wu Tong and Director Song Yanzhi at Beijing GoBroad Boren Hospital. Under the treatment of the expert team, she first received chemotherapy combined with targeted therapy, followed by a second HSCT. Today, more than a year has passed since the second transplantation. Awen returns to the hospital for regular re-examinations, her condition is stable, and her body is gradually recovering.
1. The Illness Shatters a Peaceful Life: From Initial Diagnosis of MDS to Progression to AML
In April 2019, shortly after giving birth to my second child, I decided to have a comprehensive physical examination. However, the report showed an abnormally high white blood cell count. I had just recovered from a cold, so I thought it was just a "sequela" of the cold and didn't pay much attention. But the doctor recommended further examinations, so I underwent a bone marrow aspiration. The result indicated that blast cells accounted for 2%, myeloid line showed dysplasia, and genetic testing revealed SETBP1 and ASXL1 mutations.
The doctor suspected myelodysplastic syndrome. To confirm the diagnosis, I specially flew from Urumqi to Tianjin. After reviewing my condition, the experts frankly told me that I might need a hematopoietic stem cell transplantation. Perhaps noticing my hesitation, they suggested I consult doctors in Beijing again.
Still holding a glimmer of hope, I went to Beijing. At that time, I had no physical discomfort at all. After comprehensive consideration, I chose to start TCM treatment at a hospital featuring traditional Chinese medicine.
The TCM treatment kept my condition stable for nearly two years. During my recovery in my hometown, my blood routine was basically close to normal, except that my white blood cell count was always slightly low. I didn't realize then that this was just a moment of calm before the "storm."
In October 2021, my body began to show abnormalities. For two consecutive weeks, I suffered severe gum pain and loose teeth, and could not even eat. At first, I thought it was periodontitis. It was not until I had an examination at a local hospital that I found my white blood cell count was as high as 305×10⁹/L! The subsequent bone marrow aspiration result shattered my world instantly—Acute Myeloid Leukemia (M5 subtype), with MLL-TNS3, EIF4E3-FOXP1, and ASXL1 mutations detected by next-generation sequencing.
2. A Difficult Tug-of-War: The Illness "Revives" After Chemotherapy + Transplantation
The local hospital recommended immediate chemotherapy, but my strong will to survive made me decide to seek treatment in Beijing. In mid-November 2021, I received induction chemotherapy with the DIA regimen at a Grade A tertiary hospital in Beijing. A re-examination of bone marrow aspiration showed that the condition was under control, but unfortunately, complete remission was not achieved. In early 2022, I received azacitidine + venetoclax treatment, but the re-examination of bone marrow aspiration still indicated flow residual disease. Although complete remission was not achieved, after a comprehensive assessment, I still underwent unrelated hematopoietic stem cell transplantation (10/10 HLA matching) on March 25, 2022. The transplantation process went smoothly, but after being discharged from the transplant ward, I developed severe rejection—Grade 4 skin rejection and Grade 4 intestinal rejection. For a full 40 days, I could not eat or drink, and relied entirely on intravenous infusion to maintain my life. At the worst time, a large amount of intestinal mucosa fell off, leading to bloody stools. The doctor said I was lucky; the intestinal rejection period for most people may be longer.
Fortunately, I got through all of this. As soon as my physical condition improved a little, I started rehabilitation training. From being unable to get out of bed initially, to gradually being able to walk, and then climbing the Great Wall in September—this road to recovery was difficult but extremely firm. Standing on the empty Great Wall, I took the most precious photo of my life. There was no crowded sea of people in the background, only rolling mountains and a clear blue sky, just like my new life, pure and full of hope.
The good times didn't last long. In April 2023, I had a re-examination one year after the transplantation. The bone marrow aspiration result showed 0.36% flow residual disease. Seeing that the disease was showing signs of recurrence, the doctor gave me chemotherapy with the decitabine + venetoclax + CAG regimen, followed by donor lymphocyte infusion after the end of chemotherapy. On August 29, 2023, the re-examination showed that the bone marrow morphology achieved CR (complete remission), with 0.48% flow minimal residual disease; on September 15, the re-examination showed CR in bone marrow morphology and negative flow minimal residual disease.
However, this effect only lasted for less than half a year. At the end of 2023, just as I was preparing to receive lymphocyte infusion again, my condition unfortunately relapsed. In mid-December, the doctor gave me chemotherapy and donor lymphocyte infusion again, but the effect was minimal. My condition relapsed comprehensively, and the doctor told me that only a second hematopoietic stem cell transplantation could give me a glimmer of hope.
3. Surviving Against All Odds: Transferring to Bo'ai Hospital, Multi-Drug Combination Therapy Controls the Condition
After learning that I needed a second transplantation, I made a major decision—to choose a new hospital. After the 2024 Spring Festival, I came to Beijing GoBroad Boren Hospital
and found the transplant team led by Director Wu Tong and Director Song Yanzhi. The professional and patient image of the two directors left a deep impression on me. After being admitted to the hospital, I underwent a comprehensive examination again. Genetic testing revealed KRAS gene mutation, U2AF1 gene mutation, and SETBP1 gene mutation.
What surprised me even more was that FISH testing indicated TP53 positivity, meaning that compared with the initial onset of the disease, a new TP53 gene deletion had been added!
To ensure the effect of the second transplantation, Director Wu Tong told me that the condition must first be controlled in a relatively ideal state. For this reason, she and Director Song Yanzhi formulated an individualized treatment plan for me. Initially, I received chemotherapy with the decitabine + CAG regimen, but the effect was not ideal.
Subsequently, Director Wu Tong and Director Song Yanzhi adjusted the plan in a timely manner and switched to gemtuzumab ozogamicin combined with decitabine chemotherapy. However, the condition was more stubborn than expected. This time, the two directors specially invited Director Tong Chunrong and Director Lin Yuehui for a joint consultation, and added multi-drug combination therapy including azacitidine, trametinib, venetoclax, olaparib, sunitinib, and selinexor for me. Fortunately, the treatment effect was significant: a re-examination of bone marrow aspiration on May 2, 2024, showed that the peripheral blood tumor cell report was negative, with only 0.9% flow residual disease. My condition was finally temporarily controlled.
In response, Director Song Yanzhi made a decisive decision to let me undergo hematopoietic stem cell transplantation as soon as possible.
4. A New Life After the Second Transplantation: A Difficult Transplantation Journey, Finally Seeing the Dawn of Life
May 20, 2024, a day that sounds full of sweetness, marked the start of my second hematopoietic stem cell transplantation journey. On May 30, I successfully received the infusion of hematopoietic stem cells. The days in the transplant ward were extremely difficult. Due to the high intensity of the conditioning regimen, I experienced persistent high fever, mucosal ulceration, oral bleeding, and other conditions. The most dangerous moment was when I suddenly fainted while getting up to go to the toilet... Every difficulty was overcome one by one. On the 16th day after the transplantation, the granulocytes successfully engrafted; on the 28th day, the platelets also engrafted smoothly. After all the examination indicators met the standards, I was finally successfully discharged from the transplant ward.
After being discharged from the transplant ward, compared with the severe rejection after the first transplantation, this time was obviously much easier. Although I also developed a mild lung infection, it was quickly controlled under the timely treatment of Director Song Yanzhi. I was discharged from the hospital two weeks later, and the recovery speed was surprising.
In the following days, based on my disease subtype, gene mutations, and TP53 gene deletion, Director Wu Tong and Director Song Yanzhi formulated a consolidation treatment plan to prevent recurrence. I have always strictly followed the doctor's advice, conducted regular re-examinations, and my condition has remained in remission until now.
5. Insights from Seven Years of Wandering for Medical Treatment: Life is Impermanent, Only Cherish the Present
Today, more than a year has passed since the second transplantation. In daily life, although I still need to pay attention to protection, I can already enjoy a normal life. I know that I am stepping towards recovery step by step. These seven years of experience have given me a deeper understanding of life and illness.
First of all, choice is crucial. Choosing an experienced hospital and doctor team, and selecting the most suitable treatment plan for oneself—these decisions are directly related to the effectiveness of treatment. I have seen too many fellow patients delay their condition due to improper choices. The reason why I resolutely chose Beijing GoBroad Boren Hospital for the second transplantation is that it not only has the leading domestic transplant expert Director Wu Tong but also offers more flexible and cutting-edge treatment methods. The experts can quickly keep up with the latest technologies, and when facing recurrent or refractory cases, they dare to apply new plans and new drugs to strive for more possibilities for patients.
Secondly, mentality determines state. I have always adhered to the principle of "not dwelling on the past, not fearing the future, and living in the present." I don't recall the pain of the past, nor do I worry about the unknown of the future; I only focus on doing what I can in the moment. I remember when I first got sick, I always searched for information on search engines, but the more I searched, the more flustered I became. Later, I realized: professional issues must be left to professionals. Don't search for information randomly, don't self-diagnose, and never easily "identify with symptoms."
It is also important to actively cooperate with doctors and take the initiative to be responsible for one's own life. I insist on regular re-examinations, take medications on time, and always maintain close communication with doctors. From my personal experience, consolidation treatment after transplantation is very critical, which can significantly reduce the risk of recurrence. Never take chances and stumble over trivial matters—for people like us, the cost of stumbling is too high, and sometimes even unbearable.
In addition, during this difficult journey, there are too many people I want to thank. Thank the two anonymous donors for giving me the gift of life; thank the medical team of Beijing GoBroad Boren Hospital for formulating the most effective treatment plan for me with professional judgment and courage; thank my family, especially my mother, for never leaving me and taking meticulous care of me over the past seven years; and thank the fellow patients who have walked with me. We encourage each other, share information, and illuminate each other in the dark.
Finally, I want to say to the fellow patients who read this: if you are also going through a similar difficult time, please don't give up. Modern medicine is advancing by leaps and bounds, and new drugs and new therapies are constantly emerging—every persistence is a step towards rebirth. Just as I often said to myself in the most difficult times: "As long as you are alive, there is hope." Life is impermanent, only cherish the present. I hope my story can bring you some courage and strength. Let us move forward together towards the direction of hope.
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