Tag Archives: acute myeloid leukaemia

Have a Blast!

Here’s the official announcement – I’m no longer in remission.

The aggressive blast cells are out to take over my world again. This time, they could be successful as my medical team has exhausted all possible curative treatments.

Currently, I’m receiving low dose chemo to keep the blast cells down. It’s a matter of time before the leukaemia becomes resistant to the chemo. Then I’ll have the option to go for a higher dose chemo (with more side effects of course) or oral chemo which only has effects on blasts in the blood but not in the bone marrow. No treatment and palliative care can be considered too.

Whatever it is, I have decided that my own treatment plan is to be happy with the days that I have. :)

Treatment Update

Here’s a quick update on the treatment:

- Inserted a new CVC line and had 5 days Clofarabine/Ara-C chemotherapy. Side effects as usual – loss of appetite and vomiting.

- The medical team thought my bone marrow is unlikely to regenerate white blood cells (WBC) after chemotherapy and they planned to do a stem cell transplant if that happens. But the WBC counts increased which prompted for a bone marrow biopsy. The biopsy showed that the mutated bone marrow cells was reduced from 60% to 6% and no blast cells were found. Blood VNTR (variable number tandem repeats) test was done and it showed that majority of the blood cells were from donor’s. It was an “uncommon result” and they decided to put the stem cell transplant on hold. I was given more donor’s lymphocytes as we want to have a good GVL (graft versus leukaemia) reaction.

- While WBC counts climb steadily, haemoglobin and platelet levels were going the other direction. I had an entire week of transfusions, each day alternating between platelets and red blood cells.

- Last week, the blood and platelet counts were slightly more stabilized (but still dipping) and I got discharged.

This week, I’ll be back for more blood test and transfusion (if necessary).

Dear Bone Marrow, peace please! Hehehe

I Don’t Want To Fight Anymore

The last low dose chemo, Azacitidine, only reduced the blasts for a couple of days. The baddies grew very fast and we have to move on to Plan B – stronger chemo using Clofarabine + cytarabine.

I was back in SGH on 5th July 2012 for salvage chemo. A new CVC line was inserted on 7th July, followed by chemo infusion. It was a blessing that the line insertion experience was fast and with very little discomfort. Credit to the surgeon and nurses.

Clofarabine is infused over 1hr, and 3hrs later, cytarabine is infused over 2hrs. Felt light nauseousness, loss of appetite, and some occasional headaches over the 5 days of chemo. Didn’t feel like doing anything and lying on bed doing nothing gave me more comfort.

I woke up this morning, and as I was giving thanks to a peaceful night of sleep, a thought came into my mind. For the past one year I’ve been fighting so hard to kill leukaemia. It suffered damages and so did I. We’re both strong and stubborn… and probably stupid too.

I told my marrows, it would just bring us more harm if we continue to fight on. I respect its strength and resilience and I admire even more of it’s ability to stay dormant, in peace and harmony with my body. We shared so many happy times together when we are not fighting one another. I don’t need to remove you totally to make myself ‘perfect’. Life is perfect and beautiful when we live in harmony, and I’m sure this is a win-win situation for us. So why not let’s live with each other in peace and harmony for good? XOXO, your best friend.

The Fight Resumes, Peacefully

Apologies for the lack of post for quite a while. I was away for a week of low dose chemo, went home to readjust myself physically and mentally. The fight has resumed and I would like to put my experience and thoughts to words over here as usual.

It was really difficult to accept the truth because I’d placed so much hope and expectations on the bone marrow transplant. I felt depressed and scared at the thought of a bleak future. Am I too young to go? I still have many unfinished businesses? My mum would be heartbroken! All these thoughts gathered in my mind and crowded out the optimism I used to have.

Being a fighter, however reluctant I was, I knew the fight has to continue. This treatment could be done outpatient, but I had the option to do it inpatient as well. Since I’m covered with medical insurance, it would make economic sense to go inpatient and claim. This will also ensure the next 3 months of outpatient bills are taken care of by the insurance company.

Nurses, doctors and friends who learned about my condition didn’t know what to say. They could feel my level of optimism was going down. But deep in my heart, I knew they wished me well and hope things will turn for the best eventually. In the silence that came after I explained my condition, my words echoed in my ears and I managed to break a weak laugh and said “no worries, my fighting spirit is still high!”.

This low dose chemotherapy using Azacitidine (Aza) was administered sub-cutaneously, under the skin of my tummy. It was coupled with an anti-epileptic drug, Valproate, to enhance the efficiency of the chemo. The chemo costs $700+ per injection and I received 9 jabs in total. Thankfully for the medical insurance, I’m paying nothing. Valproate was given 5 tablets for 3 times a day and it made me groggy even the next two days after my discharge from the hospital.

The chemo made me vomitted a bit and rashes developed on the front trunk of my body. Doctors suspected the rashes could be either graft-versus-host-disease (GVHD) or drug allergy reaction. I was kept for another day so that the dermatologist could remove a small piece of my skin for biopsy. We were hopeful for GVHD so that there’s graft-versus-leukaemia to keep things in control. However, 4-working days later, the rashes subsided and it’s proven to be allergy reaction. :-/

During the stay, I am glad that Ewan loaned me books on Happiness and The Art of Meditation, both by Matthieu Ricard. The books touched on the Four Noble Truths which I have learned many years back in Manjusri Secondary School. I took on further reading on the Internet about the same topic with great interest. After my discharge, Ewan recommended that I listen to Ajahn Brahm’s talks on youtube. I got quite ‘addicted’ listening to the monk and this explains for my absence from TJFC. I was seeking wisdom and enlightenment.

Ever since I started meditating, affirming my sub-conscious mind, and watching Ajahn Brahm’s videos, I found peace and joy in many things that I do or happened to me. I think for once, I really understand what is living the moment. Every day has been a great experience thus far, and I think I’d moved out of the shadows that was over me two weeks back then.

At peace, at ease. :)

Going forward

Appreciate all those who prayed for me and sent me well wishes. It’s been proven again that there are certain things that are not within our control. The blast cells in the bone marrow went up to 30%. What we possibly can take in control now, is to take up a low dose chemotherapy to bring it down to less than 5%. Then carry out a donor (my brother’s) lymphocyte infusion, hopefully will result in a graft-versus-leukaemia reaction, keeping me in remission.

Because the relapse occur very close to the transplant, giving another high dose chemotherapy or transplant may result in more serious complications.

I just hope for a good long term remission now.

Bone Marrow Transplant – Chemotherapy Phase

Everyone told me it is not easy to go through bone marrow transplant (BMT) treatment – one would need to be strong physically and mentally, to go through the harsh chemotherapy treatment. I am just extremely glad that this treatment is over and hope that the transplant is successful and I would never need to do chemo anymore!!!

The bone marrow transplant protocol is divided into three phases: 1. Chemotherapy Phase (Before Day 0), 2. Peripheral Blood Stem Cells Infusion Phase (Day 0), and 3. Engraftment and Recovery Phase (Post Day 0).

27 Feb 2012 (Day -8), a wet morning. The rain had stopped but mum and I only managed to flag down a cab after 45mins. We checked-in into Ward 48A and were ushered into Room 4, the place I call home for the next one month or more. The medical equipment (e.g. infusion pump and blood pressure meter) looked first class.

The panoramic view outside the window was splendid – Duxton and CBD area on the left, PSA in the middle and cable cars to sentosa on the right. The treatment lined up for the day was an intrathecal (IT) jab and the start of 3L saline hyperhydration. I remembered during the second cycle when I had my first IT jab, the side effects were too much for me. This time I was extra careful, obediently lying flat on the bed for 6 hours, even if that meant little or no dinner for that day. Time went by slowly, I finally got up near midnight to have a cup of milo and biscuits.

28 Feb 2012, Day -7.
My obedience served me well indeed – no headaches, nausea or vomitting! One obstacle conquered! The pharmacist came with an informative handout on the drugs I would be taking and their potential side effects. It is a long list but thankfully they are not long term medication and will be gradually taken off as I get better. I have never swallowed so many tablets and capsules before in my life, they looked so intimidating!

Morning Medication

Evening Medication

Busulphan chemotherapy infusion started about 2.30pm. By night time, my stomach was churning a bit. :( (

29 Feb 2012, Day -6.
Happy Leap Year! Bag 2 of 4 busulphan infusion today. Everything still holding except for one of the CVC line stitch. Had it re-stitched by Dr Kwan.

1 Mar 2012, Day -5.
Woke up with slight nausea and a bloated stomach, signs of vomitting coming. Third bag of busulphan infusion and I am halfway through the chemotherapy phase!!! Breaking up the challenges into small bits and knowing that I had overcome these short term challenges motivated me more than counting down to discharge day.

Had my diet upgraded to A Class. Finally got to try the long awaited mutton-tofu burger, but the mutton was inducing nausea. Together with the bloated stomach, my appetite was poor. It was not enjoyable at all.

My brother, the donor, went for his first GCSF injection to give a boost to his stem cells growth.

2 Mar 2012, Day -4.
My body finally surrendered to busulphan, I puked after a sip of milo. This nauseousness is building up and it is causing me to rest more on bed. Last bag of busulphan and all I have to do, can do, was to endure. Begun cyclosporin A (immunosuppressant) infusion; it caused hot flushes, making me looked red. A better description of the hot flushes is the internal heat that one feels when he/she comes to a stop after an hour of jogging, less the perspiration.

3 Mar 2012, Day -3.
After 4 bags of busulphan, cyclophosphamide was up next. Strongest chemo between the two, and probably the strongest I have received thus far. Strongest in terms of the side effects… and it was really no joke. After the infusion at 8pm, I felt a horrible burning sensation around my mouth and it made me restless until 1am when it finally subsided. I felt defeated and wanted to give up. It was really a mental and physical struggle.

4 Mar 2012, Day -2.
After last night’s ‘torture’, I was half dreading and half looking forward to the last bag of cyclophosphamide. Been vomitting on average, twice a day, and it was really making me sick. The burning sensation made things worse, but fortunately this time it did not last as long as the day before. I knocked out happily, knowing that it was finally over.

5 Mar 2012, Day -1.
It was a day of rest before the stem cells infusion tomorrow. My brother folded some paper cranes and hung them around the room to cheer me up. :) )

I want to go home!

Fourth Cycle

I was reluctant to return for the fourth cycle of chemotherapy after staying home for so long. Or maybe I was more worried about my dad’s deteriorating health that I wanted to stay around to help. I told myself I had to do two things before I leave for chemo this time – to give dad a hug and take a photograph with him.

11-Oct

The very first night in Room 4 was very spooky. Staff nurse Yvonne came in 4 times attending to nurse calls which I swear I have never activated. She disconnected my bed’s nurse call cable from the wall panel and gave me a separate call button which solved the problem.

It was too much of a coincidence: 4th chemotherapy, SSN Clarice called me at 4pm to notify me to check in, Room 4, disturbed around 4am by nurse call 4 times and next day going to do the 4th bone marrow aspiration. Chinese dislikes ’4′. So do I.

12-Oct

Dr. Ho came by in the morning and presented me with the HLA Typing report. My siblings and my blood were tested for bone marrow matches, in case there is a need for transplant in the future. Our bone marrows match completely! This news is sufficient to make any leukaemia patients jump for joy!

BMA was done by Dr. Zaw. He said my bone is very hard. By those words, you can tell how sensational the whole procedure was to me. After I was done and returned to my wheelchair, a patient next to me asked: “Is it painful?” We chatted a bit while the medical team was making preparation for his BMA. He was recently diagnosed with lymphoma. It came so unexpectedly as he did not feel anything amiss before the diagnosis.

Chemo commenced in the evening. I was not given any itraconazole syrup this time. Decided to keep quiet about it and swallow its capsule form instead. Had bloated stomach as usual, but I would still blame the hospital menu for my poor appetite.

17-Oct

I have completed chemo in the morning. My diets tasted weird, perhaps metallic taste is a better description.

After dinner, I received information that my family was sending dad to A & E to check on his right leg which he could not move. It was approaching midnight when he finally got transferred to an available bed, and it was in the same ward as me!

18-Oct

After the doctors have completed their rounds, I masked on and ‘sneaked’ out of my single room to visit my dad. Soon every nurses knew my dad was in the same ward and they would asked me about my dad whenever they came into my room. For a few days, I did not feel like I was a patient.

23-Oct

A single dose of pegfilgrastim was injected to boost my neutrophil counts.

30-Oct

Was down with chills and high fever the past two days. Vomited a bit and appetite was poor thereafter. Shivered so hard that I switched off the air-conditioner and hugged a heat pack underneath three blankets.  Blood culture was done and a gram-negative bacteria, Klebsiella pneumoniae, was found. Antibiotics treatment was reduced from a strong and broad-spectrum vancomycin to a narrow-spectrum ertapenem.

7 Nov

The infectious disease doctor had requested for a CT scan to identify the source of infection. Breakfast was at 4.45am as I had to fast before the CT scan. The CT scan machine reminded me of a time machine or a portal that I can return to the past. How I wish it was one that could bring me back to the past.

8-Nov

The radiologist spotted an abscess in my liver which was likely the source of infection. The infectious disease doctor reviewed my case in the afternoon and recommended the course of antibiotics to be extended to 6 weeks.

Met the family of a young lymphoma patient at the patient’s tv lounge. The little girl was feeling down and her family wanted me to talk to her, hoping that I could cheer her up since I have been through chemotherapy. I think I failed at cheering her up, but I was not too worried as her prognosis is pretty good. I hope she would take a step back and look at the big picture – she has a beautiful life ahead!

9-Nov

The team doctor came this morning and repeated the same things the infectious disease doctor said. They had arranged a late discharge for me, which I had rejected as I would have to return to Haematology Centre for ertapenem infusion.

10-Nov

I was given 28 vials (S$2520.00) of ertapenem to take home. If you do the math, you will get $90/vial/day. How does it sound to start your day with an expensive breakfast that does not even make you full?  Thankfully I am insured.

A few leukaemic cells were still found in the bone marrow. This means I will need to return for a 5th chemotherapy. Prior to that, we have to ensure the liver infection is totally cleared out. Meanwhile it’s daily antibiotics infusion for me and followed by another CT scan to review the size of the abscess.

To better health!

28 Days Later

Ahhh… I am just so glad that the 2nd cycle is over!

The 2nd cycle chemo drugs were similar to previous cycle except that Idarubicin was reduced to 2 bolus over 2 days. I thought it would be an easy one since the last cycle was ‘patient-friendly’.

The surprise came on the 2nd day of chemo, after Dr Mya saw me in her morning round. I was told I need to take an intrathecal (IT) jab at the spinal region to ensure that there were no leukaemic cells in the central nervous system (CNS) or the brain. Anything to do with the CNS or brain sounds frightening! Will I be paralyzed if the needle went the wrong way? Will it be painful and unbearable? But, having heard from her that many patients had been through this with not much problems, I thought I could not chicken out at that point of time. Fortunately, the IT procedure was not as bad as I had imagined, thanks to anesthesia! I followed their instruction and laid flat for the next six hours.

The next day, my appetite started to decline, but, I managed to finish breakfast. I had a minor headache. So I slept my way through to noon. When lunch was served, I sat up on bed and felt a strong wave washing up my gut… With one hand covering my mouth, I quickly signal to a nearby nurse to hand me a vomit bag. Out came the digested breakfast.

Day after day, the headache worsen. It would haunt me whenever I sit or stand up, but not when I lay flat on the bed. This could be one of the side effects of IT, I was told. I was practically sleeping  the whole day and was unaware of my surrounding. The only comfort I got was mum’s occasional visit and she help to massage my temples and forehead. Because of her presence, I knew I was not fighting alone. And for once, I selfishly wanted to keep her with me.

The only time that I was up was during meals and shower time. The sight of food, swallowing food and water made me wanted to puke. It felt really horrible. When I was asleep, images of friends and families flashed across in my mind – all encouraging me to stay strong and persevere. Thankfully, the nauseous feeling and vomiting faded towards the end of chemo (day 7). But my appetite was still bad and I was given nutritional supplement - Abbott’s Ensure® Liquid.

To add on to the torturing side-effects, I had a high fever half way through the chemo. Blood culture result showed that there was gram negative bacteria infection and the CVC line was possibly the source. The doctor had the line removed and I was back to inserting plugs and needles on both hands so that chemo drugs, saline drips and antibiotics could be administered intravenously.

I was upset that the CVC line did not stay long with me. It had given me lots of convenience. But the fever subsided almost immediately after the line was removed. A few days later, I was scheduled for a 2nd CVC line insertion. At the operation room, I was greeted by a doctor who soon covered my head with sterile green towels and begun with the procedure. It hurt a lot – even with anesthesia applied – when he tried to push the line into my body. Half way through, I heard a familiar voice asking the doctor – “So what do you do next?” It was the voice of the doctor who did the line insertion for me previously! “Sh*t!!! … a trainee doctor!”

The line insertion site felt sore and achy in the day. Around midnight, I woke up from sleep feeling a bit of numbness from my right arm down to my pinky. I was running a high fever again. Two days after the procedure, my new CVC line was removed due to infection. And I was on a stronger antibiotics, vancomycin. Dr Mya was apologetic for wanting to have the line inserted but I knew she had good intention for doing so. No more line insertion this cycle, she promised. My right arm had more needle prick scars that could be joined together to trace or outline my vein.

It was probably due to poor nutrition and the vomiting that I was low on potassium. Potassium replacement was given in the form of oral pills and drips. Receiving potassium intravenously was painful  near the IV site and I had to request the nurses to slow down the rate of infusion and give me ice packs to numb the pain.

I overcome the ordeals, my blood counts were up and I was transferred out of single room. But I was not allow to discharge as I had to complete the 2 weeks course of vancomycin antibiotics.

28 days of stay… about a week less than the first cycle, but it felt like forever…

Preparing for Chemotherapy

With the problem defined, effective solutions can be recommended. Dr Aloysius arranged for a family conference in the hospital to tell us about the treatment and other relevant information. Dad, my siblings and I sat in the conference room and listened to Dr Aloysius’s treatment plan. It was good that we came prepared with questions of concern about the upcoming treatment.

Some of the key things Dr Aloysius mentioned:

1. Survival rate for young Acute Myeloid Leukaemia (AML) patient with treatment is quite high. However, it depends on the bone marrow biopsy results which will determine the type of AML and whether the prognosis is a ‘good risk’ or ‘bad risk’.

2. Chemotherapy should begin immediately. The prescribed chemotherapy drugs are Idarubicin and Cytarabine which would be administered 3 days and 7 days respectively. The need for bone marrow transplant would be determined after the bone marrow biopsy results are out.

3. Sperm banking should be considered if the patient plans to have a family in future. This is because the entire course of treatment may cause temporary or permanent fertility problem.

Questions and what concerned us:

1. My cancer is in which stage now?

- There are no stages to acute leukaemia. It happens rapidly and requires immediate treatment.

2. What are the side effects of chemotherapy?

- The common side effects include nausea, vomiting, loss of appetite, hair loss and mouth ulcers. These are temporary only.

3. What is each treatment cycle like?

- Each treatment requires patient to be hospitalized for about a month. A week of chemotherapy, followed by rest and recovery of blood counts which could take another 2-4 weeks. The recovery period usually shortens on subsequent chemotherapy cycles.

4. Are there any food that I shouldn’t be eating?

- Raw and under-cooked food (e.g. sashimi, sushi, salad), sliced and thin-skinned fruits (e.g. grapes, strawberries), unpasteurized dairies products (e.g. milk, cheese). Patient should consult the doctor before taking any traditional chinese medicine (TCM).

5. What is the estimated total cost for the treatment?

- About S$10,000 – S$30,000.

There were probably thousand of questions in my head at that time, but I decided to take things a step at a time. No point overloading myself with so much information or creating fears through wild thoughts and imaginations. It’s easier (and more enjoyable) to eat a steak by cutting it up into bite size than to swallow the whole steak. On top of that, every leukaemia patient may have a different set of treatment and experience. I learned to always listen and read with a pinch of salt, and prepare myself physically and mentally for the upcoming challenges.