Part 1: The Tragic Story of An Eleven-Year-Old Boy With Leukemia

This article comes in two parts: Part 2: Understanding Medical Treatment Protocol for Childhood Leukemia

At CA Care we do not get to see many leukemia cases. If we have the option, we would rather ask you to go for medical treatment. This is because, according to medical literature, modern-day chemotherapy achieve good cure rate with leukemia. However, of late, we get to see more leukemia patients – especially children and young adults. One case that triggered me to write this article is that of Matt (not real name),  an eleven-year-old boy who came to our centre on 21 January 2013. Matt had undergone all the necessary medical treatments but his leukemia did not go away. Eventually the doctors told Matt’s parents to just bring him home. There was nothing else that the doctors could do for him. Under such circumstance, Matt’s parents brought him to see us. We could not refuse this case, since this is probably the last hope for Matt and his parents.  However, we cautioned Matt’s parents that they still need the doctor’s help – for blood transfusion or other life-threatening problems that may crop up.

I brought Matt’s file home to study his case in more detail – what he had gone through. Then I decided to do more reading. Let me share with you what we know about leukemia as of today.

What is leukemia?

It is cancer of the blood that develops in the bone marrow. When a patient has leukemia, the bone marrow, for an unknown reason, begins to make white blood cells that do not mature correctly. They continue to reproduce themselves very quickly and do not function as healthy white blood cells. Then the immature white blood cells, called blasts, begin to crowd out other healthy cells in the bone marrow. The patient experiences many symptoms such as infections, anemia, bleeding, etc.

Childhood leukemia

Leukemia is the most common form of cancer in children. It accounts for about 30 percent of children cancers in American children.  According to Conter V.  et al. (Acute lymphoblastic leukemia. Orphanet Encyclopedia, Dec. 2004) about 3,000 children in the United States and 5,000 children in Europe are diagnosed with ALL (acute lymphoblastic leukemia )each year. The peak incidence of ALL occurs between age two and five years.

The 2003 – 2005 report  of Cancer Incidence in Peninsular Malaysia indicated that leukemia was the most frequent type of cancer among male and female Malaysian children from birth up to 14 years old.

Almost all cases of childhood leukemia are acute, meaning they develop rapidly and get worse quickly if not treated properly. ALL  is the most common type of leukemia in children. It   accounts for three out of every four cases of childhood leukemia in the US, making it the most common type of cancer in children.

Acute myelogenous leukemia (AML) is the next most common type of childhood leukemia.

In Malaysia, about 85 per cent of childhood leukemia cases are due to ALL. The remaining cases are mostly acute myeloid leukemia (AML).  In Singapore three out of every 10 youngsters are diagnosed with ALL annually. Note: Chronic lymphoblastic leukemia (CLL) does not occur in children and chronic myeloid leukemia (CML) is very rarely seen in children. AML is the most common type of acute leukemia in adults.

Symptoms of Childhood Leukemia

Common symptoms are: fatigue or weakness, infection and fever, easy bleeding or bruising, shortness of breath and coughing. Other symptoms may include: bone or joint pains, swelling of the abdomen, face, arms, sides of neck or groin, swelling above the collarbone, loss of appetite, headaches, seizures, balance problems, or abnormal vision, vomiting, rashes and gum problems.

According to Conter V. et al. of Italy, the first symptoms of children with ALL are usually non-specific and include anorexia, irritability and lethargy.  Fever is the most common symptom – found in 60 percent of patients. Progressive bone marrow failure leading to pallor (or anemia), bleeding (thrombocytopenia – low platelets) and susceptibility to infections (due to neutropenia  – low white blood cells). Over one third of patients may present with a limp, and pains in the bone and joints.  Less common signs and symptoms include headaches, vomiting, respiratory distress, oliguria (small amount of urine) and anuria (absence of urine).  At initial diagnosis, 60 to 70 percent of children have enlarged liver or spleen. Lymphadenopathy  (enlargement of lymph nodes, usually painless) is also frequent (Acute Lymphoblastic Leukemia: )

The Story of Matt

Mat was 10 years old when he had fevers, gum bleeding and both his lower limbs had bruises and petechiae (tiny red spots) rashes for four days. According to his mother, before this he was breathless and lethargic for about a month. They consulted a doctor in a government hospital in their hometown. On further examination, there were bruises at his lower lip and both lower limbs. There were petechiea rashes over the abdomen. The cervical and inguinal nodes were palpable and measured 0.5 to 1 cm in size. His liver and spleen were swollen.

Blood test showed hyperleucocytosis (abnormally excessive numbers of leukocytes in the blood) and thrombocytopenia (lower than normal platelets). Further test showed 89 percent blast cells, suggestive of acute leukemia.

Due to persistent oozing from a wound at the lower lips, Matt received platelet transfusion for three times. He was also given antibiotics, IV Cefuroxime.

Matt was referred to the General Hospital in Penang.  His blast cells were positive for CD2, CD3, CD7, CD8, cyTdT and weak for CD13 which was consistent with T-ALL.

Matt was started on ALL BFM 95 protocol on 27 December 2011.

  • IV Dexamethasone
  • Oral Prednisolone
  • IT methotrexate
  • IM Asparaginase

In addition Matt was given: Bactrim, Morphine, Ranitidine, Ceftazidime, Amikacin, Cloxacillin, Neupogen, Pyridoxine and Dexamethasone eyedrops.

After eight days, his blood showed 58 percent blast, 6786 cells – down from 89 percent.

On 21 January 2012 blood test showed 2 percent blast.

On 25 January 2012 PBF (peripheral blood film) showed no blasts.

On 27 February 2012 Matt received:

  • Dexamethasone
  • IV Vincristine
  • IV Methotrexate
  • IV Folinic acid
  • IV Ifoshpamide
  • IV Daunorubicin
  • IV Asparaginase
  • IV Kytril

However, the chemotherapy protocol was upgraded from moderate risk to HR (high risk) on 30 January 2012 due the day 8 PBF which showed blast more than 1,000.  Matt completed the following chemotherapy:

  • 1st HR1 protocol on 30 Janruary 2012
  • 1st HR 2 protocol on 27 February 2012
  • 1st HR 3 protocol on 19 March 2012
  • 2nd HR 1 protocol on 14 April 2012
  • 2nd HR 2 protocol on 25 May 2012

Among the drugs Matt received were:

  • Ara-C, Etoposide
  • Triple IT (Methotrexate + Cytarabine + Hydrocortisone)
  •  IV Asparaginase

Matt was started on chemotherapy Protocol IIa on 27 June 2012. He received:

  • Dexamehtasone
  • IV vincristine
  • IV Doxorubicin
  • Erwinsa Asparginase

In and Out of Hospital

Matt had been in and out of the hospital for quite a while. For examples:

He was admitted on 26 February 2012 and was discharged on 16 March 2012 due to the following problems:

  • Neutropenic fever: Despite being treated with IV Vancomycin, Matt developed multiple temperature spike. Despite starting on Cefepime, Matt still had persistent temperature spike.
  • Infection over chemoport.
  • Raised ALT. Chemotherapy completed on 16 March 2012 but his ALT = 144 on 16 March 2012.
  • Persistent abdominal pain.
  • Hypokalemia (lower-than-normal amount of potassium in the blood).

Matt was again admitted on 19 March 2012 and was discharged on 5 April 2012. His problems were:

  • Anaphylactic shock (sudden, severe allergic reaction characterized by a sharp drop in blood pressure, urticaria, and breathing difficulties).  Matt present with generalized skin itchness, epigastric pain, vomiting, chills and rigors. BP was lowish and pulse weak. This problem according to the medical report was a problem due to Asparginase.
  • Neutropenic fever.
  • Asymptomatic thrombocytopenia. Platelet count = 7.
  • Anemia.
  • Hypokalemia.
  • Raised ALT.  On 19 March 2012, ALT = 181; 23 March 2012 = 252; 24 March 2012 = 279; 25 March 2012 = 230.

Matt was admitted on 20 July 2012 due to:

  • Rhinorrhoea (persistent watery mucus discharge from the nose)
  • Neutropenic sepsis

For these he was covered with IV ceftazidime and amikacin. He had persistent temperature spike and had toothache on Day 3 admission and was reviewed by dental with impression of pericoronitis (infection causing swelling or inflammation of gums and surrounding soft tissues ).

Bone Marrow Transplantation (BMT) 

According to Mattt’s mother, they were in Kuala Lumpur for about a month. Matt underwent an allogenic  BMT on 14 August 2012. The donor was his brother.

Post-BMT Matt was on:

  • monthly IT Methotrexate (last done on 19 December 2012)
  • Cyclosporin
  • Bactrim


Matt was admitted on 2 January 2013. This is what the doctor wrote (reproduced per report dated 3 January 2013):

  • Admission for poor oral intake for two days associated with lethargy and bilateral knee pain. On examination, he was noted to splenomegaly with hepatomegaly. An urgent Full Blood Picture was taken and verbally reported by our hematologist as 75 percent blast cell seen.
  • Both mother and father were explained regarding the patient’s condition and progress. Explained that patient’s FBC is such that TW is increasing trend and other parameters are reducing trend. PBF showed blast cells suggestive of relapse.  Also explained that chemotherapy is not an ideal option in view of his condition.
  • Parents were advised regarding palliative care.
  • The life expectancy is probable for another 6 months. Explained that prognosis is grave. Parents were also counseled regarding HOSPICE (only available in Penang).
  • Parents understood.

Following are excerpts of our conversation:

Chris: (After a year of chemotherapy and BMT, he suffered a relapse). After this, what did the doctor say?

Mother: Doctor said: Go home. The doctor could not do anything more for him. He could undergo more intensive chemotherapy   –  following the adult protocol – but he might not be able to take it.

C: So, after that you were left doing nothing?

Father: We went around the village and started taking herbs and some roots of plants.

M: The doctor told us that if there is any bleeding, then we should bring him back. If there is a need for blood transfusion, we need to do that. That is all that they can do for us.

C: Okay, that is good. We need the doctor – if there is not enough blood, go quickly and have a blood transfusion while we are not doing anything, you can try the herbs. But I cannot guarantee that I can help in this case. Anyway, we can try if you like.   Over the years, I did help some patients. But don’t expect that by taking the herbs for one or two months the problem will go away.

C: (To patient) Did you suffer while undergoing chemotherapy?

Patient: Shaking his head.

F:  They put a chemo-port for him.

M: It was very difficult.

F: But he is a person who can endure pain.

M: Oh, when undergoing BMT it was worse. He had pains in the bones – throughout the whole body. He received six times of intensive radiation – twice a day for three days. Then they gave him chemo. I forget how many cycles. But it lasted only about half an hour each time.

C: Let me have a look at his medical records. He had chemo for about a year? Do you see much success while in the hospital?

Father: Many failures.

M: It was just an experiment hoping to help the children.


In short, after a year of all possible medical treatments, Matt was back to the same condition he was as in early December 2012.  And he was given six months to live. It was at this point that Matt and his parents came to seek our help on 21 January 2013.

We have learned early that chemotherapy is said to be most effective – high complete response and high cure rate – for five types of cancer: Hodgkin’s disease, testicular cancer, choriocarcinoma, lymphoblastic leukemia and childhood cancers.  So, treating ALL is supposed to be one of chemotherapy’s success stories. Unfortunately for Matt, chemotherapy had failed to help him.

Sverre Lie, President of the International Society of Paediatric Oncology (in Cancer in children – clinical management) wrote:

  • The progress which has been achieved in the treatment of childhood cancer is in many ways a remarkable success story. From being an almost lethal disease 20 – 30 years ago, more than 70 percent of children with cancer can now be offered treatment with cure as most likely outcome.
  • However, this progress has its dark side …. The diagnostic process is complicated, the therapy very demanding or even life-threatening, and the possibility of relapse a constant threat.
  • The problems of long-term sequelae are a matter of concern. (Note:  Sequelae is any abnormal condition that follows and is the result of a disease, treatment, or injury. E.g. deafness after treatment with an ototoxic drug, or scar formation after a laceration).
  • Furthermore, it remains a sad fact that in spite of all the progress made, childhood cancer is still the leading cause of death from disease in children. The remaining third that we are still unable to cure with present strategies remains a tremendous challenge.
  • We have three important challenges: first we need to find effective therapy for the third whom we cannot cure with current strategies; secondly we want to get rid of long-term sequelae in the patients were are able to cure today; and thirdly we would like to spread the knowledge of effective treatment of childhood cancer to areas and countries where no such service is available.

Let me close by quoting Conter V. et al. of Italy (cited earlier):

  • Treatment has thus become increasingly complex and high levels of organization, expertise and knowledge are nowadays required to achieve optimal results.
  • For these reasons children with ALL should be treated in centers which can offer specialized personnel and provide up-to-date diagnostic tools and treatment strategies.

Psoriasis and Myelodysplastic Syndrome: After chemo with Decitabine he has to undergo bone marrow transplantation

This is an e-mail I received from Singapore.

Dr Chris,

I am writing on behalf of a neighbour of mine who is suffering from a type of cancer that I have never heard of until now. It is called Myelodysplastic Syndrome (with AML transformation). He went on a clinical trial treatment using a drug called Decitabine.

He has gone for five cycles of the drug now and due for the last one in November 2011. His name is DT.

DT seems to be responding to this treatment because his blood count has gone back to normal. Only problem is this is only short term as the root cause of the problem is in his bone marrow. His doctor is recommending that he goes for a bone marrow transplant, which will cost him SGD 40,000. The current treatment would have cost him SGD 48,000 but since he does not have money, they offered him for free. Apparently in Singapore past clinical trial using this drug indicated that only 1 out of 20 responded positively to this drug. In this trial, he is the only ‘rat’ and seems to work on him.

He does not wish to go for the bone marrow transplant because he does not have the money and doctor told him the procedure is very risky and he may die during the process. So he called me and I am writing to you.

From talking to DT, I think he has poisoned his body from his past occupation working with chemicals in pest control, etc., which may be the cause of MDS.

I am checking your availability this week and next week so I can bring him to see you. He is still weak but at least he can walk now. The last time I saw him four months ago, he was in terrible shape. He is also suffering from psoriasis which was how they discovered his MDS during the psoriasis treatment.

Rgds, KG 

DT came to see us on 11 November 2011. Listen to our conversation that day.




Doctors are men who prescribe medicine of which they know little, to cure diseases of which they know less, in human beings of whom they know nothing ~ Voltaire, author and philosopher, 1760

My first advice to patient, after having seen a doctor and been diagnosed with a disease, is to take care of yourself. Empower yourself with knowledge – meaning you have to do a lot of “homework” and read about your problem yourself. In this way you can understand what your doctor is doing to you. There are times when you need to make your own decisions.

Indeed we are lucky living today in an information technology era. Whatever you want to know can be obtained and answered with a “click of the mouse”. This is exactly what I did with the internet to learn more about the problems faced by this patient. So before we start to ask questions, let us know first.

About Psoriasis

Psoriasis is an autoimmune chronic disorder of the skin caused by accelerated speed of skin reproduction. It manifests as scaly spots on the skin. One of the major symptoms of psoriasis is joint inflammation. Psoriasis is not a contagious disease.

The treatment for psoriasis includes the use of creams and ointments, oral medicines such as thioguanine, hydroxyurea, cyclosporine, methotrexate, etc. Phototherapy –  artificial or natural ultra violet light –  is another method used to treat psoriasis.

In spite of a range of options, there is no known cure for this disease. The disease is unpredictable, going through random cycles of improvement and worsening. The effectiveness of psoriasis treatments can be unpredictable. What works well for one person might be ineffective for someone else.

About Myelodysplastic Syndromes (MDS)

MDS is formerly known as preleukemia. The prefix “myelo” means spinal cord or bone marrow, while “dysplastic” means abnormal development. So MDS is a diverse collection of blood-related medical conditions that involve ineffective production of the myeloid class of blood cells when something goes wrong in the bone marrow. The bone marrow does not make enough normal blood cells for the body

Patients with MDS often develop severe anemia and require frequent blood transfusions. Patients may also develop low blood counts due to progressive bone marrow failure.

Some types of MDS are mild and easily managed, while other types are severe and life-threatening. Mild MDS can grow more severe over time. About one third of patients with MDS may end up with acute myelogenous leukemia (AML). This can happen within months to a few years.

Treatment: There is no cure for MDS. But there are three treatment options.

  1. Supportive care – patients with low-risk MDS are usually treated with supportive therapy such as blood transfusion, use of blood growth factors and antibiotics to fight infection.
  2. Chemotherapy – the chemo-drugs used include Lenalidomide (Revlimid), Decitabine (Dacogen), Azacitidine (Vidaza, Mylosar), Cytarabine (Cytosar-U, Tarabine PFS), Idarubicin (Idamycin), and Daunorubicin (Cerubidine, Rubidomycin).
  3. Bone marrow transplant (BMT) – this is a procedure to replace damaged or destroyed bone marrow with healthy bone marrow stem cells.

In the case of this patient, DT first went to the doctor because of his long-standing skin problem, psoriasis. Although he was give a certain cream to apply it did not work for him. This is not unexpected because medical science cannot cure psoriasis.

From psoriasis, the doctors diagnosed DT with MDS – a preleukemia condition. DT was admitted into a chemotherapy clinical trial using the drug, Decitabine or Dacogen. After six cycles of Decitabine his blood parameters became normal. And here we can ask a few questions:

1.     Chemotherapy normalised his blood but did it cure his MDS? The answer is probably not. The doctors told him that the disease will recur within a few months if he does not undergo a bone marrow transplantation. So, one dangerous treatment leads to yet another dangerous treatment.

2.     Patient had psoriasis and he was treated for MDS. Okay, but did chemotherapy helped his psoriasis? The answer is also no. His psoriasis still persists (see photos).

3.     How effective is the chemo-drug Decitabine? And what are the side effects? Let’s go into the website and learn more.

Decitabine is a US-FDA approved drug for treating myelodysplastic syndrome. Before I was able to read the information on this drug from the company’s website,, the following Safety Information popped out. I needed to click this “safety button” first before I could get to read the rest of the information in the website: Yes, I have read the DACOGEN Important Safety Information (below).

  • Treatment with DACOGEN is associated with neutropenia and thrombocytopenia – neutropenia (87%), thrombocytopenia (85%), febrile neutropenia (23%), and leukopenia (22%).
  • DACOGEN may cause fetal harm when administered to a pregnant woman. Men with female partners of childbearing potential should use effective contraception during this time.
  • Bone marrow suppression was the most frequent cause of dose reduction, delay, and discontinuation. Six patients had fatal events associated with their underlying disease and myelosuppression (anemia, neutropenia, and thrombocytopenia).
  • Of the 83 DACOGEN-treated patients, 8 permanently discontinued therapy for adverse events compared to 1 of 81 patients in the supportive care arm.
  • In the single-arm study, hematologic toxicities and infections were the most frequent causes of dose delays and discontinuation. Eight patients had fatal events due to infection and/or bleeding. Nineteen of 99 patients permanently discontinued therapy for adverse events.
  • Other commonly occurring reactions include fatigue, pyrexia, nausea, cough, petechiae, constipation, diarrhea, and hyperglycemia.
  • Because there are no data on use of DACOGEN in patients with renal or hepatic dysfunction, DACOGEN should be used with caution in these patients.

The following are the side effects of Decitabine:

Low blood counts, Fatigue, Fever, Nausea, Cough, Petechiae, Constipation,  Diarrhea, Hyperglycemia , Headache, Difficulty sleeping, Swelling , Low albumin,  Low magnesium, Chills, Low potassium, Bruising, Rash, Low sodium, Dizziness, Generalized aches and pains, Cardiac murmur , Poor appetite, Sore throat, Abdominal pain, High bilirubin blood level, High potassium, Mouth sores, Drowsiness, Abnormal liver function blood tests, Confusion, Anxiety, Itching, and Heartburn.

The overall response rate is only 17% consisting of 9% Complete Response (CR) and 8% Partial Response (PR).

That is the message I would like to impart to cancer patients.  Before you go into any invasive treatments, read first and know what you are up against. Know the risks and make your decisions accordingly. In cancer treatment, it seems there is no such thing as right or wrong answer. Take your risks and hope for the best.

After enduring the discomforts and “danger” of chemotherapy, DT came out of this experience rather well but the treatment did not solve his problem at all. He still has psoriasis and he was told that without BMT (bone marrow transplantation) he would suffer a recurrence of his MDS. DT did not want to proceed with BMT – in other words he wanted to give up medical treatment.

This is another message I would like patients to think about. Why abandon your medical treatment half way? To achieve medical success DT has to undergo BMT and if he does not do that the purpose of him having chemotherapy earlier becomes meaningless. If you do not wish to proceed with BMT would it be wise for you to undergo chemotherapy in the first place? I have encountered similar situations very often. Patients went to the doctors. They did CT scan, scoping, biopsy, etc. When asked to undergo an operation or chemotherapy, they backed out. It is good to do the CT scan or the scope to know what has gone wrong. But to do a biopsy? There is no need to do a biopsy if you have already decided not to proceed with surgery or chemotherapy or radiotherapy. It is meaningless.  

About Bone Marrow Transplantation

Let me be clear. I am not saying DT should undergo BMT after his chemotherapy. I know the risk and danger of such procedure. Let’s have a closer look of what BMT is all about first.

There are three kinds of bone marrow transplants:

  1. Autologous bone marrow transplant: “Auto” means “self.” Stem cells are removed from you before you receive high-dose chemotherapy or radiation treatment. After these treatments are done, your stems cells are put back in your body.
  2. Allogeneic bone marrow transplant: “Allo” means “other.” Stem cells are removed from another person, called a donor.
  1. Umbilical cord blood transplant: Stem cells are removed from a newborn baby’s umbilical cord immediately after being born. The stem cells are stored until they are needed for a transplant.

Before the transplant, myeloablative chemotherapy and / or radiation are given to kill any cancer cells that may be present. This allows new stem cells to grow in the bone marrow. In some cases, reduced intensity (or nonmyeloablative) treatment is done before a BMT. It is hoped that the newly implanted bone marrow will “match” and go to produce healthy cells.


  • Infections, which can be very serious
  • Bleeding in the lungs, the intestines, brain, and other areas of the body
  • Anemia
  • Stomach problems, including diarrhea, nausea, and vomiting
  • Pain
  • Inflammation and sorenes in the mouth, throat, esophagus, and stomach, called mucositis
  • Damage to the kidneys, liver, lungs, and heart
  • Cataracts
  • Early menopause
  • Graft failure, which means that the new cells do not settle into the body and start producing stem cells
  • Graft-versus-host disease, a condition in which the donor cells attack your own body


  • A bone marrow transplant may completely or partially cure your illness.
  • Complications or failure of the bone marrow transplant can lead to death.

From my experience, I know of patients who went through BMT and died. And I know of Peter (not real name) who was asked to under a BMT so that he could live ten or more years longer. He refused. Peter was on our herbs and it has been fifteen years now, and Peter is healthy. Click this link to read more,

But let not my experience influence you. Let us ask the computer these two questions:

  • What is the risk of dying while undergoing BTM? There is no clear cut answer. The following are some indirect answers:
  1. Two- to 5-year survival rates after transplantation plus chemotherapy range from 40 – 80%.
  2. Complications or failure of the BMT can lead to death (with no percentage given). BMT carries a risk of treatment-related death.
  3. The high-dose chemotherapy and total body irradiation required for BMT can have serious side effects. Before undergoing BMT, you will be asked to sign a consent form indicating that you have received verbal and written information to understand the risks and benefits of the proposed treatment.
  4. Organ toxicity — The lungs, liver, and bones are at greatest risk of damage as a result of treatments used with BMT.
  • What is the long-term survival of BTM patients?
  1. Although most were apparently well, survivors at 10 years and 15 years after BMT continued to have an increased risk of death. Causes of death were related to relapse of the underlying cancer, development of a second cancer, chronic GVHD, or transfusion-acquired viral infection.
  2. In patients who receive an allogeneic BMT as treatment for acute myelogenous or lymphoblastic leukemia, chronic myelogenous leukemia, or aplastic anemia and who are free of their original disease two years later, the disease is probably cured.
  3. Results of recent studies of allogeneic BMT for CML report long-term survival rates of 55%-80%, with median survival of more than 10 years.
  4. 3,788 patients had been observed for 10 or more years. The probability of being alive 10 years after HCT was 85%. The chief risk factors for late death included older age and chronic graft-versus-host disease (GVHD). For patients who underwent transplantation for malignancy, relapse was the most common cause of death

Having done all the reading, it is up to cancer patients themselves to make up their minds – to go for BMT or not. At CA Care we always say this, This is your life. It is you and only you, who can decide what you want to do with yourself. Others around you can only help but ultimately it is you and only you who will have to bear the consequences of your decision. So decide wisely.