“There is only one straight road – chemotherapy and bone marrow transplant. Otherwise death,” said Ken Leung King-lau, 30, a leukaemia patient.

 

Mr Leung has been waiting for a suitable bone marrow for nearly a year since his cancer recurred last year. This time, he was not as lucky as he was in 2013, when he was first diagnosed with acute lymphocytic leukaemia (ALL).

 

Back then, after six doses of chemotherapy, he received an allogeneic bone marrow transplant from an unrelated Hong Kong donor, recovered well and was able to continue to work.

 

But in May 2015, his cancer recurred, but there was no matching bone marrow in Hong Kong. A possible Taiwanese donor was rejected at the final check in mid-February 2016.

 

Mr Leung was just one of the blood cancer patients who are eagerly looking forward to a suitable donor.

 

They need new bone marrow – a spongy tissue filling most bone cavities and containing stem cells to produce blood cells, white blood cells and platelets – to replace the damaged one in their body. The damage could be caused by a number of blood diseases, including leukaemia, aplastic anaemia and other genetic blood and immune system disorders.

 

In Hong Kong, blood cancer is one of the top ten killer cancers. More than 1,000 new cases are diagnosed each year and at least 10% of them are diagnosed in children. It is the most common cancer seen in young people, according to the Hong Kong Blood Cancer Foundation.

 

For the Queen Mary Hospital, they performed 100 to 110 allogeneic transplants from 150 to 160 allogeneic transplants referrals every year. Among those, 85% are for leukaemia.

 

Leukaemia is a cancer found in blood and bone marrow, characterised by an abnormal growth of white blood cells in bone marrow and peripheral blood. It is classified into acute and chronic. But its exact causes are not known, and which one possible cause is gene mutation.

 

After diagnosis, patients would receive several doses of chemotherapy in order to kill the cancer cells before receiving new bone marrow.

 

Although chemotherapy can successfully treat some of these patients, for many the only possibility of a cure is to have a stem cell transplant from a healthy donor, according to the Hong Kong Red Cross.

 

“If you want a full recovery, the only treatment is bone marrow transplant in Hong Kong,” Mr Leung said. “Transplant is an absolute hope.”

 

Bone marrow transplant is likely to remain the only hope of cure for many patients and disease conditions in the foreseeable future, said Dr Joycelyn Sim Pui-yin, Associate Consultant in Department of Medicine of the Queen Mary Hospital.

 

A bone marrow donor must have highly or completely matched human leukocyte antigen (HLA) – tissue types of white blood cells – with the patient for a successful transplantation. The patient who could not find a donor within the family has to resort to an unrelated donor.

 

According to statistics, the chance of having matching bone marrow among siblings is one in four. But the chance of finding a matched unrelated donor is about one in 5000 to 10,000. The odds are even less than one in 10,000 for patients who have rare HLA.

 

HLA, related to gene, can have thousands of combinations. Among them, there are at least eight types. A donor’s bone marrow must match a minimum of six HLA types with that of the patient so that it would, after being transplanted, grow and develop healthy blood cells and reduce the risk of graft-versus-host disease, according to research.

 

In Hong Kong, in about 30% of the cases, a matched donor can be found among the patient's family, such as a brother or sister. The other 70% of patients have to rely on a matched volunteer donor.

 

Mr Leung has an elder brother and an elder sister but they fail to match his bone marrow. So he had to search for a suitable donor, first is from the Hong Kong Bone Marrow Donor Registry (HKBMDR) and then the blood banks of Chinese communities to the world blood banks.

 

He said the effect of the chemotherapy medicine could not be sustained for a long time that his illness would recur, so he had to receive bone marrow transplant soon.

 

Mr Leung was still hopeful because the US is investigating a new method, adoptive T-cell therapy, to treat ALL, and there are successful transplants from parents’ bone marrow donation in Beijing.

 

Demand for unrelated bone marrow transplant referral has increased over the years from 30% of all allogeneic transplant referrals in the 2000s to 50% in 2015 as average Hong Kong family size decreased over the last few decades, said Dr Sim.

 

“I still have my mum as my final resort,” said Mr Leung, referring to a new method of treating leukaemia by transplanting bone marrow from a patient’s parents.

 

In Hong Kong, the Queen Mary hospital has done two cases of transplanting bone marrow from a patient’s father or mother, so called haplo-identical transplant. One failed and one succeeded.

 

Dr Sim said they are actively exploring this new way of transplant, “If we can establish this as a regular service, I believe haplo-identical transplant could be a viable option for the patients who do not have matched sibling donors or unrelated donors from local and overseas registries.”

 

Mr Leung was staying at home when waiting for a suitable bone marrow.

 

“The most hurtful impact on a leukaemia patient is that you cannot work and leads to giving financial pressure. Second, you are trapped at home since you could be infected easily. Third, you cannot eat well, as you vomit. Fourth, you feel uncomfortable with your appearance,” said Mr Leung, who is a nurse.

 

While worrying about the financial pressure of taking care of his parents and paying housing mortgage, Mr Leung feels fortunate that his insurance can cover the cost of his medical treatment and pay for his living expense for a period of time.

 

“I am rather an optimistic person. I feel relieved and would not ask why it happens to me,” Mr Leung added. “I live day by day. I find entertainments and engage in my interests to make me not bored, while looking forward to bone marrow transplant.”

 

“The worst thing is not death but the prospect of not recovering and feeling sick due to the effect of the medicine,” he said. He cited the desperate example of a fellow patient who cannot receive transplant because of persistent fever for six months even though his bone marrow had arrived from the US and had cost several hundred thousand dollars. “So I am lucky that my condition is not that bad.”

 

Mr Leung is glad that he has moved to a new flat with a spacious and comfortable environment to treat his illness. And he still has the energy to play music and computer games, and hang out with friends. But he feels sorry to those living in a poor environment with a heavy family burden.

 

“Patients like us have to be trapped at home and feel dizzy and sleepy all the time. Leukaemia is a lonely illness because you have to stay away from other people to reduce the chances of getting infection.”

 

“At first I thought of giving up treatment. Anyhow my survival rate is predicted to be about 30%,” he said of his recurrence. “But why not try if there is chance to live? Maybe I suffer a bit now but gain a life in the future.”

 

He said many leukaemia patients suffer from recurrence, receive a second transplant and recover well. “Many patients may not have the chance to receive a bone marrow transplant, depending on their health condition and the control of chemical medicine,” Mr Leung continued. “I am good at both, but just don’t have a matching donor.”

 

His patience for these ten months is not wasted. In March, he got good news that a matched donor has been found in Hong Kong so he received a transplant on 16 March.

 

“I am not afraid of death. I prefer to live longer and healthy on earth rather than believing in heaven after death,” said Mr Leung. “I want to get well soon and work.”