Day +419 : Who says traffic jam is not good?

I am fine today.

A church member of mine visited the Christian Book Fair three times (Day +507) and spent about RM2000 on books and audio visual materials.

He said he already go through most of the audio visual materials. The reason that he could do it so fast is because he has to spend hours on the road everyday, beating the traffic jams to office. The best thing to do to cheer him up while getting caught in a traffic jam is to indulge himself in listening to CDs. And of course, his life will be enriched with the materials that he listens. So the traffic jam is a blessing in disguise to him :-)

In contrast, my office is within walking distance from my house, but I still haven’t got a chance to touch most of the materials that I had purchased from the Book Fair. It is so difficult to find a quiet reading time with so many children around at home :-)

How I wish I could experience some traffic jam too so that I can go through the materials that I had purchased :-)

See you next post :-)

Day +208

I am fine today. Now continue to talk about herbs…

While I was doing my third cycle of chemotherapy, my fourth sister photocopied a newspaper cutting to me. It told a story about a Leukaemia patient who became very weak certain days after receiving the first dose of chemo drug and his platelet count failed to rise. After drinking Yantuo soup, his platelet raised ‘beautifully’. The conclusion was Yantuo cured Leukaemia and saved his life.

I compared my platelet trend with his and found out that it is quite normal to have such trend. The platelet count was just about to increase at the time he took Yantuo. In other words, if he did not take Yantuo, the platelet count would still increase. Even if Yantuo did help to raise his platelet, how could he claim that Yantuo cured his Leukaemia? Treating Leukaemia is not as simple as maintaining good platelet count!

It can be difficult to cast doubt on this kind of testimony for someone who did not go through this kind of treatment. However, to my youngest sister, she just could not understand my explanation and insisted that I should drink Yantuo soup. She even went all the way to Bentong to bring home the leaves of a big Yantuo tree, dried it and kept it for me.

Due to my sister’s enthusiasm on this leave, I drank Yantuo soup everyday since 3rd cycle of chemotherapy, but the platelet trend was still the same as the previous two cycles of chemotherapy :-( Anyway, I must thank her for taking trouble to prepare the soup for me :-)

I stopped drinking it since the bone marrow transplant.

To be continue and see you next post :-)

Day +207

I am fine today. I attended church service this morning and in the afternoon, I rushed to UH to visit some friends. Now continue from yesterday…

What about herbs? I was introduced so many types of herb after I was diagnosed with this disease. If I was presented with convincing cases regarding the effectiveness of these herbs have on my disease, I shall not go for bone marrow transplant.

Many people claim that a plant called Rodgersia sambucifolia Hemsl (岩陀-Yantuo) cures Leukaemia. This was reported in various newspapers and magazines. I post photos of the leaves below. If you see trees with such leaves in your front or back yard, don't get rid of them. Many people are looking for them.

Raw Yantuo leaves. Click the picture to get a larger view.


Dry Yantuo Leaves. Click the picture to get a larger view.

After analyzing testimonials found in newspapers and magazines carefully, I failed to convince myself beyond reasonable doubt that it is in fact Yantuo that cures Leukaemia.

Please understand that I am not saying that they are not effective at all. What I can say is until now I am still not sure whether it works as claimed. I am still searching for convincing cases that prove that it works and I really hope that I could find one.

In fact, the main reason that I rush to hospital this afternoon is to ‘investigate’ a claim that a 73 year old patient who failed chemotherapy gain complete remission (cancer cells fall below 5%) after drinking Yantuo soup. Busy body me, isn’t it? :-)

I will continue to share with you my experience with herbs.

See you next post :-)

Day +206

I am fine today. Continue from yesterday…

Computer or no computer, does it matter? Many people suspected my disease was caused by my profession as a software developer. They believe computer produces electromagnetic field that causes cancer in human body. If this is true and substantiated with conclusive research reports, I would not mind to change profession and stop using computers and most importantly, I shall not go for bone marrow transplant.

I only met one patient whose profession was related to computer throughout my treatment in UH, but surprisingly, I met 6 school teachers who received treatment due to Leukaemia or Lymphoma in the same period of time :-( Apart from this, I also met students, housewives, clerks, lorry drivers and etc.

A colleague of my wife (teacher) was very worried when she heard that I was diagnosed with this disease. She is afraid of getting the same disease as I am because she is subjected to heavy pressure at work. If she came to know I met so many teachers who were diagnosed with blood diseases, she must ‘terpelanting’ (falls flat on the floor) :-(

With this, I hope those who work long hour in front of computer and are worried about of getting ‘infected’ by the computer the same disease that I was getting can “sit back, and relax” now :-) Teachers do not have to worry too much too; meeting so many teachers at that period of time might purely be a coincidence.

To be continued and see you next post :-)

Day +205

I am fine today. Continue from yesterday….

Meat or no meat, does it matter? Many people advised me not to eat meat after I had this disease. They said meat is not good for our health. They are influenced by some alternative health promoters who strictly prohibit their followers to consume meat with ‘great’ and unsubstantiated theories.

If giving up meat could guarantee a cure without bone marrow transplant, or at least achieve a long term survival rate equivalent to that of bone marrow transplant, I would be very happy to be a vegetarian. Everybody just follow what everybody said but where is the reputable scientific report and statistic?

Recalling what I had studied in Biology about human teeth and digestive system, I concluded that there should be no basis of claiming human as plant eater (herbivores). We have various types of teeth such as incisors, canines, and various types of molar for grinding, tearing and cutting foods. This shows that humans are omnivore who are both plant and meat eater. Why should we insist that we are now herbivores? Could God design our teeth wrongly?

I met a Hindu lady in her late 40s while doing chemotherapy in UH. She was diagnosed with Acute Myeloid Leukaemia (AML) and in one occasion, we stayed in the same cubicle in the hematology ward. She had been a vegetarian for the past 40 over years and yet she still got this disease. Now her family forced her to eat meat :-(

Meat to no meat, no meat to meat is an example of extreme action some patients take to ‘combat’ their disease. After much pondering and as an omnivore by God’s design, the best bet to me is still a balanced diet :-)

To be continued ad see you next post :-)

Day +204

I am fine today. Continue from yesterday…

I met an Acute Myeloid Leukaemia (AML) patient in UH during my 2nd cycle of chemotherapy in UH. He was a retired school headmaster. In one occasion, we stayed next to each other in the ward. He was a very socialable man who talked a lot. While other people addressed me as “Ting” or “David”, he insisted to address me “Mr. Ting” (陈先生). In return, I addressed him “Headmaster”(校长) :-)

He told me he was still the chairman of 18 forms Tai Chi Chun (18 式太极拳) Association of Federal Territory. He used to teach hundreds of students to practice Tai Chi Chun. Unfortunately, he was also diagnosed with Leukaemia.

This gave me a clearer picture on the exaggerated claims of certain practices has toward our health. Now if someone told me practicing Tai Chi Chun will make us disease free, stay 100% healthy, I will have a second thought of it. While these practices do bring certain benefits to our health, it is definitely an over-claim to say that they are panacea (万灵丹) to our health problem.

See you next post :-)

Day +203

I am fine today. Continue from yesterday…

During my third cycle of chemotherapy in UH, I met an Acute Myeloid Leukaemia (AML) patient who failed to response to many rounds of chemotherapy in SJMC and UH. We befriended each other and in one occasion, we stayed next to each other in the ward.

He was a fan of a prominent Hong Kong male singer called Eason Chan (陈奕迅). The singer flied all the way from Hong Kong to support and encourage him during the last stage of his disease. This was reported on the front page of Sin Chew Daily and multiple pages on the entertainment session.

Someone introduced the family a Qi Gong master (气功大师) from Johore who claimed to cure many people from all sort of sickness, including cancers. They spent more than RM1000 for the Qi Gong master to come to the hospital. My friend’s mother told me later that the Qi Gong master demonstrated his ‘power’ by placing his finger tip on top of her head and made her spin. The Qi Gong master explained that the Leukaemia is caused by blocked Qi in the body and patient could practice Qi Gong to unblock the Qi to cure Leukaemia. He also helped ‘transmitted’ his Qi (运气) into my friend’s body in an attempt to unblock the Qi.

Further to this, this Qi Gong master asked my friend’s mother to phone him everyday to enable his Qi to be transmitted through the telephone line to her, and this Qi was then transferred to my friend through his mother. The call is not without cost, RM40 per call :-( This is really incredible to me!

I observed my friend's progress carefully, hoping that the Qi Gong master’s power would works as claimed, and my friend would be cured. If this happened, I will practice Qi gong and shall not go for transplant.

To my disapointment, this Qi Gong failed miserably on him and he passed away not long after I was discharged from my transplant. I wrote a short note about him on my blog Day +35.

To be continued and see you next post :-)

Day +202

I am fine today. Now continue to talk about my pre-transplant preparation and struggle…

At that time, I came across a Chronic Myeloid Leukaemia (CML) patient who failed to bring her disease under control after two bone marrow transplants. Her husband gave her large dose of LingZhi and Pollen from a MLM health food company. Since she was unable to swallow so many capsules, her husband opened the capsules, extracted the LingZhi powder to mix with water for her to drink. Then he ate all the empty capsules because they are too ‘expensive’ to throw away.

Coincidentally, someone introduced me a ‘magic’ Mangosteen Juice called Xango which is rich in Xanthones. The producer of the juice claimed that “Research shows Xanthones possess potent antioxidant properties that may help maintain intestinal health, strengthen the immune system, neutralize free radicals, help support cartilage and joint function, and promote a healthy seasonal respiratory system.*” You can read more about the product here.

The Xango agent encouraged me to try the juice but my question was, “How do I know it works?” He asked me to monitor my cancer cell count in my blood, but I told him after the chemotherapy, the blood count was normal. This means I could not see any improvement brought by Xango through the blood, if any. So I introduced the Xango agent to the husband of the CML patient that I mentioned above, hoping that the ‘magic’ juice could work as claimed.

That patient was very weak at that time, the Xango agent was so confident that the juice would work. He even asked the husband to “just sit back and relax!”

It was disheartening to learn that this juice, together with the LingZhi and Pollen failed miserably on her. She passed away not long later.

To be continued and see you next post :-)

Day +200

I am fine today.

I rested for about two months after the fourth cycle of chemotherapy before going for bone marrow transplant. During this waiting period, I occasionally wished that I could escape from the transplant. So I said to myself, if I could find a proven magic product or approach that could cure my disease, I would not go for transplant.

At that period, I was very alert of the alternative health approaches that other patients were trying, with the hope of identifying one that is useful for me. In other words, I hope to find one that is ‘powerful’ enough to ‘rescue’ me from bone marrow transplant.

The approaches that I came across includes Chinese Herbs, Qi Gong, health products such as LingZhi (灵芝), Xango Mangosteen Juice, Oncogen XP-180 and many others.

I read claims made on these products or approaches, studied scientific reports, talked to patients, observed their progress and pondered heavily on the effectiveness of these approaches.

To be continued and see you next post :-)

Day +199

I am fine today.

With so many negative comments received about UH, why I still do transplant in UH?

In fact, I initially planned to complete all remaining chemotherapies in UH then do bone marrow transplant in Subang Jaya Medical Centre (SJMC), the only private hospital that offers bone marrow transplant services in Malaysia. I was told the estimated cost of transplant in SJMC is about RM150,000. This is beyond the coverage of my medical insurance.

On the other hand, the government will bear all my transplant charges if I carried out transplant in UH. This is because my wife is a government servant and in Malaysia, all family members of a government servant enjoy medical coverage provided the treatment is done in government or semi-government hospital.

However, to me, the primary concern of choosing a transplant centre is its mortality rate, not the cost. Life is better than money, isn’t it? I was informed by my first haematologist in Kuching that the mortality rate of an allogeneic transplant is about 20% to 25%. This is consistent with what I read later. If the mortality rate of a transplant in UH falls within this range, there should be no reason not to do transplant here, considering the cost.

In order to find out this, my eldest sister accompanied me to see Dr. Alan Teh in SJMC. Many questions asked and answered. The most important one to me was the mortality rate of a transplant in UH and his answer fell within the above range. Since he is the visiting consultant to UH, I trust his answer and decided to do transplant in UH without further hesitation.

I was very ‘happy’ after the decision because one of the side effects of the transplant would be significantly reduced now. This side effect is called poverty. In fact, the insurance company ‘paid me to stay in hospital’. In the end, I earned money, the money that no one ever wished or dared to earn :-)

See you next post :-)

Day +197

I am fine today.

"Ask David to dig his grave first before doing his bone marrow transplant in UH!" This was a warning message I received from a friend who was receiving treatment in Singapore while I was doing my third cycle of chemotherapy in UH. He was a Chronic Myeloid Leukaemia (CML) patient whom I met during my second cycle of chemotherapy in UH. As his condition worsened, he furthered his treatment in Singapore. Unfortunately, he could not make it eventually.

"What is the mortality rate of having bone marrow transplant here?" I asked one of the haematologists in UH. He answered bluntly, "50%." This means every two person who undergoes transplant, one will die. It was very likely that he was joking as we joke quite a lot, but this joke was really 'killing' me :-(

The messages that I received from many people were "Failure! Failure! Failure!" It is very funny that people tend to focus more on failure (negative) than success (positive). Apart from this, I had to face many negative comments about the doctors and facilities in UH. Someone who didn't really understand my disease even advised me not to go for transplant at all.

How did I shield myself from this negative environment? The very first thing to do was to relax and trust my Lord Jesus completely. Do whatever I could do and leave whatever that is beyond my control to Him. His is my pilot, it is definitely my wish to land safely, but if I ‘crashed’, I am very sure I would crash into heaven :-)

See you next post :-)

Day +196

I am fine today. Continue from yesterday…

About 2 months before the transplant, blood stem cells are collected from my third sister. Most of these stem cells reside in the bone marrow and there are only a small number of them ‘escaped’ into the blood stream (peripheral blood). As collecting stem cells from bone marrow is an invasive and painful procedure, peripheral blood stem cells (PBSCs) become an excellent alternative.

In order to make sure that there are enough stem cells in the peripheral blood, the donor is given Neupogen injection twice per day over a period of four days. This stimulates the bone marrow to produce many stem cells so that they ‘flood’ the blood stream. During the stem cells collection, blood from the donor is drawn from one arm to a machine which filters out the stem cells. The blood is then returned to the body through the other arm. A typical collection took about 8 hours to complete, but the lab only took 2 hours to collect sufficient stem cells from my sister. I attributed this fast collection to her ‘heavy weight’ body which carries bigger number of stem cells. Who say big size is no good? :-)

If the lab fails to collect stem cells through the arm due to small veins or vague veins, they have to collect them from the groin which is more painful and inconvenient. In order to make her veins on the arm big and apparent, my sister came to my house everyday to do ‘weight lifting’ and ‘weight throwing’ using my daughter Adriel :-)

I really appreciate my sister’s determination in donating her stem cells to me. It is her stem cells that produce blood in my body now. In other words, we share the same blood. You see, how closely related are we?

To be continued and see you next post :-)

Day +195

I am fine today. Now continue to talk my pre-transplant preparation and struggle…

We were very nervous to wait for the HLA typing result. The probability of finding a match in a sibling is 25%. Since I have 8 brothers and sisters, we should find two matches. However, we came to know earlier that a patient with 12 siblings failed to find a match. If I could not find a match, I have to find a non-sibling donor whose HLA type matches mine and this type of transplant is more complicated. The fact that this type of transplant has to be done abroad would also increase greatly my financial burden.

Everyone in the family was relieved when the HLA typing results showed that my third sister’s HLA type match mine. In fact, we least expect her to be the donor because she is ‘heavy weight’, having hypertension and stomach problem. In addition to this, she is very sleepy :-) I wrote about her sleepiness on my blog Day +20 :-)

Now we have to repent because we 'looked down' upon her initially:-( She is now my hero :-) And I praise God, the greatest hero in my heart, who provided the one and only and the best match for me :-)

To be continued and see you next post :-)

Day +194

I am fine today. Now back to talk about my pre-transplant preparation and struggle. Continue from my blog Day +158.

As explained in my blog Day +157, in order to find a suitable donor, all of my 8 brothers and sisters did a HLA typing. The test was done in UH and each test cost RM550. The total amount that I paid was 8 x RM550 + RM550 (myself) = RM4400.

I issued 3 cheques to UH on 21 January, 22 February and 23 February 2006 with a total amount of RM4400. Do you know what happened to the cheques? Not even cleared by now!

About 4 months after I issued the cheques, a man called Zakaria met my brother Richard in UH to discuss the payment. We did not know who he was. He took out the three cheques and suggested Richard to exchange them with cash. In order to encourage us to hand him cash, he said he would give us a discount of RM550. A ‘win-win’ solution, isn’t it? However, Richard declined. After this, they lose interest totally at the cheques until they ‘forgot’ to bank them in.

This thing corrupted people mind, corrupted the administration and then corrupted the nation. This is merely the tip of an iceberg (冰山一角). There were so many promises that these things will be ‘handled’ by the ‘top’, but the greatest ‘win-win’ deals are struck on the ‘top’. I looked at this as a top-down syndrome. The tremendous amount of effortless income generated through these deals make the ‘top’ too weak to handle themselves :-( Sigh! This is another Malaysia Boleh!

They returned the three cheques to me on 21 December 2006 and requested me to send them new one because they were expired. I will definitely pay them. However, how do I know next year this time they won’t return the new cheque again and ask me to issue another one?

Never mind-lah, be patient. I will just wait until they ‘beg’ me frantically for the cheque before issuing them a new one. This is to make sure that they will bank in this time before the 6 months expiry period.

See you next post :-)

Day +158

I am fine. I attended church service this morning.

Continue from yesterday…

In order to identify the suitable donor fast enough so that I could continue transplant immediately after my fourth round of chemotherapy. We decided to do HLA typing for the rest of the sibling at once.

While I was doing my third round of chemotherapy, Sie Ling went to UH to draw blood sample for HLA typing. My eldest sister, Sie Huong is staying in Kuching, she sent the blood samples to UH for typing through courier service. My third brother who is staying in Bintulu came back to Sibu to draw blood samples together with the rest of my brothers and sisters who are staying in Sibu and Bintangor.

Richard went back to Sibu on the 23, February and brought the blood samples of 5 of my brothers and sisters to UH on the next day. In order to catch the 9:00am flight, the lab who took the blood sample opens at 7:00am. The amount of blood sample from each individual is about 75ml to 100ml. But to play safe, my eldest sister said it would be better to draw 150ml of blood sample from each one. Unfortunately, the lab did not have test tubes large enough to hold 150ml of blood. It only has test tube with 50ml capacity. So three test tubes of blood sample are needed and everyone ‘kena cucuk’ (get poked) three times that day :-(

In fact, there is a type of needle with a plastic tube connected to it that would allow multiple test tubes of blood sample to be drawn through a single poking. The lab there did not have this type of needle.

To be continued and see you next post :-)

Day +157

I am fine today. Now continue to talk about my pre-transplant preparation and struggle.

Everyone in my family were guessing who’s HLA would match mine. We put a lot of hope on my youngest brother, Richard and fourth sister, Sie Ling. All three of us are staying near to each other in Puchong, Selangor while the rest of my brothers and sisters are staying in Sarawak.

Richard and I did the HLA typing first on 20th and 23th January respectively while I was doing my second round of chemotherapy in UH. Our idea is that if his HLA match mine, the rest do not need to do the typing. This would save us some money.

There are two places we could do the typing, one in UH which costs RM550 per person and the other one in Institute For Medical Research, Malaysia (IMR) which costs RM25 per person only. I was told that the IMR would need more time to produce the test result. In order to be fast, we decided to do the test in UH.

It was found out that Richard’s HLA does not match mine after three weeks we sent our blood sample for testing.

To be continued and see you next post :-)

Day +156

I am fine today. I would like to talk about my pre-transplant preparation and struggle.

As mentioned on my blog Day +130, I explained the reasons that made me so determined to go for transplant, even though it is a high risk procedure.

The type of transplant that I went through was called sibling (brothers or sisters) Allogeneic Transplant. The stem cells from a matching brothers or sisters are first collected. The recipient then goes through heavy chemotherapy to strike off his or her own stem cells. After this, the stem cell from the donor is infused into the recipient vein. These stem cells will find their way miraculously into the recipient bone marrow to manufacture blood.

In order to find a matching sibling, a type of test called Human Leukocyte Antigen (HLA) typing need to be done. There is a probability of 25% that a sibling’s HLA will match each other. In other words, I should find a match in every four brothers or sisters. Since I have 8 brothers and sisters, I was very confident that I could find at least one match.

HLA is a group of genes that encodes the cell-surface antigen-presenting proteins. Only siblings with matched HLA are donor candidates. This is to make sure that once the donor stem cells started to function in the recipient, it will produce the same cell-surface antigen as before, and this prevent the new antigen to start an immune response to attack the host (recepient) organs, a symptom called Graft Versus Host Disease (GVHD).

To be continued and see you next post :-)

Day +130

I am fine today. I went to church this morning.

Today, I would like to explain to you what made me so determined to go for the risky bone marrow transplant.

On my blog Day +66, I mentioned that my first cytogenetic analysis indicates that my blood’s chromosome was abnormal. The abnormality is called 3q deletion whereby one of the pair no. 3 of the chromosome was shortened. Unfortunately, this type of abnormality categorized me under bad risk group.

After I was discharged from the hospital, I studied carefully a report by Tulio E. Rodriquez, MD and Patric J. Stiff, MD, Current treatment results of allogeneic bone marrow transplantation for acute myeloid and lymphoid leukemia. Curr Hematol Rep. 2003 Jul;2(4):295-301. The report gave me quite a good understanding on the prognosis (long-term survival rate or percentage of 5 years disease free) of my disease.

The report said that the long-term survival rate (5 years disease free) of a high risk AML patient is 15% only. An allogeneic stem cell transplant might increase the survival rate to 40% to 60%. However, doctor also told me that the mortality rate of transplant is about 15% to 20% during transplant and 5% after transplant. So the overall mortality rate due to transplant is about 20% to 25% which make the transplant a risky procedure. Nevertheless, the significant improvement in prognosis makes the procedure worth to try.

The report also mentioned that low risk group has a 50% survival rate with chemotherapy treatment along and stem cell transplant does not bring further improvement. Thus, transplant is only recommended after a relapse for low risk group.

With these statistics in mind, I determined to go for transplant.

See you next post :-)