Tag Archives: 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. :)

Hello, Day +56

Been missing-in-action for so many days. The second bone marrow transplant, at reduced intensity, had almost reduced me to bones making me weak and just want to rest it out.

The nua days are over and now I have regained some decent strength, energy and consciousness to update you briefly on my treatment progress.

22 Oct – 17 NovHospitalized for Second Haematopoietic Stem Cells Transplant a.k.a. Bone Marrow Transplant
23 Nov – 7 DecHospitalized for Treatment of unknown infection
11 Dec – 18 Dec: Hospitalized for Treatment of parainfluenza infection 

During the above mentioned period, I felt like there were many small tsunami waves of side effects from all the drugs and treatments hitting me. The side effects would have been tolerable if they have not overlap each other. In any case, the tough times are over and the tough man last!

As for treatment outcome, thus far, I’m in remission (cheers!!!) and my spanking new set of bone marrow is carrying out its duties well. There are signs of mild graft-versus-host on the skin and liver and they were all well managed by the medical team (cheers!!!).

Till then, may we have more good news to come, especially so for 2013!

Third Time Lucky

We have tried to delay this as far as we could. A second transplant is inevitable.

I had my second chance in life in March this year, but it didn’t work out the way we want it to be.
Perhaps it’s going to be third time lucky for me. The medical team has set the date of admission to be on 22 Oct 2012.

Chance of remission is about 10 – 20% (previously 70%).

Chance of Graft versus host disease – 60 – 80%.
- This is both good and bad.
Good in a way that the chance of graft versus leukaemia is higher.
Bad in that the donor cells may launch aggressive attacks on my cells.

I have done whatever I could, the rest I will leave it to fate.
What’s important now is to live happily, with peace in my heart.

The following two to three weeks will be difficult and likely to be another test of my limits. Visitors are limited to my immediate family.
To my supporters, I would really appreciate any lovely quotes, jokes, pictures or even past good memories that we had together send to my whatsapp, facebook or email. Things that will give me the strength and will to fight. Things that will make me break a smile. Things that water the seeds of hope, courage and positivity. :)

Health Update

After last week’s drop in blast counts to 4%, I was so happy and hopeful that it will reduce further this week.

Unfortunately, the numbers shot up to 29%.

This calls for Plan B, which is to re-transplant using my sister’s haematopoietic stem cells. The transplant is likely to be scheduled in two to three weeks time. The following week will do another bone marrow biopsy and pre-transplant checks (vision, heart, lung, kidney & liver function, dental and etc.)

Knowing my condition well, this day will come eventually.
In any case, I am very contented with the quality time I had for the past 7 weeks.

There is still a glimmer of hope that GVHD (stimulated by DLI) will take place within this two weeks. Then, perhaps, I may not need a transplant.

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 – Engraftment and Recovery Phase (Post Day 0)

Day 1 – 4
These four days were like a short recovery period post-chemotherapy. Those awful side effects that were making me sick were more or less gone and I did not feel physically weak as before. However, the nurses warned me of the upcoming mucositis and sore throat which most patients experience a few days after Day 0. FYI, mucositis results in painful ulcers and inflammations on the mucous membranes of the entire gastrointestinal tract. As a result, I was told to follow the saline and caphosol gargle schedule strictly.

Besides preparing myself mentally for the incoming second (and hopefully the last) wave of side effect, it was also time to load up with lots of food to compensate for all the vomiting and poor appetite during chemo and after mucositis sets in. My responsibility for those few days was to eat as much as I could!!! Thanks to Marcus, the dietitian, I knew how much I was consuming and how much more I had to take in terms of the milk supplements. And even greater thanks to SSN Eunice who taught me that by freezing the packet of Ensure for about 3.5 hours, I would get a ‘dessert’ close to ice-cream!

Meanwhile, my white blood cells, platelets and haemoglobin levels were dropping fast, which was expected.

Day 5
The back of my throat was already red and today I felt a small pain when swallowing my own saliva. Also experienced a short pain every time I pee. To make things worse, I had a strong urge to pee like every 20 minutes. At times the urine looked red as if there was blood, though a simple dip test showed negative. Laboratory test showed no signs of urinary tract infection as well.

Day 6-7
White blood cell count was dead low and fever sets in now and then. Was quickly given antibiotics to treat the fever. Magnitude of sore throat worsen.

Day 8-10
The pain along the throat was hard to swallow. I was forced to switch to liquid diet which consisted of Ensure, Ensure Plus and Resource 2.0. Even so, I had to force the viscous milk down, each time taking at least half an hour to complete a pack of about 200ml. Drinking the milk seemed to increase mucous production and I had to swallow my saliva more often, increasing the pain. At last, I requested for morphine, hoping it would ease the pain. But, no it did not help, not even with an increased dose. The pain aggravated as predicted by Dr Linn, I stopped talking and regularly spat out my saliva instead of swallowing it. I was given the option to have tube feeding but I rejected the idea as the nutrients absorption is poor. I took the pain so my body could gain, afterall, no pain no gain!

The orange flavoured morphine syrup was probably the best tasting medicine among all, but it caused drowsiness, hallucinations, nausea and bad dreams. I hardly get a decent sleep at night, I was either choking on my saliva or waking up from nightmares.

Day 11 – 18
Requested to stop morphine and switch to Fentanyl patch because I disliked the dopey effect from morphine. However, the patch did not ease the pain either. Day 13+, my wbc showed a significant jump to 0.92 (from 0.32). Most importantly, my platelets showed an increment from 31k to 45k – a sign that engraftment has taken place. But engraftment could only be confirmed if the increment is stable.

Day 14+, platelets went up further to 68k, that’s engraftment for sure! Mucositis improved gradually as the blood counts improved and I could include soft food in my diet. A pity, the chemo seemed to have disconnected my taste buds from me, I could not taste what I was eating. SEN Giam told me usually patients’ taste would only improve around Day +40. ZOMG!

Day 16+, doctor ordered a change of IV Cyclosporine to oral form and stopped my hydration drip! If my counts are stable, I could go home soon. That was definitely music to the ears. The doctors kept me under observation for another two days and I finally got discharged on Day +18.

Cyclosprine is also known as the “smelly drug”. I can’t describe how bad it smells but it’s bad enough to induce vomitting.

The entire stay of 26 days was much lesser than the estimated 6-8weeks! In the last week of stay, Dr Teh commented on my determination to recover as the nurses reported that I took over an hour to complete my meals. I really wanted my cells to have the daily required nutrition so that I could get well soon. My effort paid off!

Very thankful for Ward 77 nurses who came over to visit me and give me their support after work, and the many friends who texted me to check how was I doing.

Confirmation about my discharge was given in a short notice. Appreciate mum and brother’s effort in doing a quick spring cleaning the day before I return. I am also grateful that Keong came to fetch me home as my family went to pay respect to my late father and grandparents. It’s good to be home, always, with your loved ones.

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!

NSman-Patient

Being a NSman, and now a leukaemia patient, I have to update the Army about my medical status for two reasons:

1. To avoid getting charged for not attending remedial trainings (RT).

2. To get a PES status downgrade.

The 2-page Medical Report (cost $89.24!!!) finally reached my hands last week, on 4-Oct, after some delay. I logged into NS.sg to book a medical review appointment, hoping to find a slot this month before I return for my fourth cycle. The month of October slots were fully booked but I managed to get one in mid-November.

Then I navigated to the “Book Non-ICT IPPT/RT/IPT” page and saw a notice:

“Please COMPLETE your 20 RT sessions by 29/10/2011, otherwise you will be subjected to disciplinary action.

That’s like I may face charges before my medical review appointment date! I ranged Mindef customer service for an advice and I was told to book an IPT on 29 Oct. I followed suit, but could not understand why, by booking IPT, I will not be charged.

Honestly speaking, I am not worried about getting charged as I have a valid reason with supporting documents. The Army will review my case separately, if not, my MP will.

Thinking back, at the initial stage of diagnosis, I rejoiced at the thought that I may not need to fulfill the 10 years of reservist and IPPT. Another case of blessing in disguised. Now as I understand my condition better, I am thinking I might have rejoiced too early – I may only get a temporary downgrade. Perhaps the Army is kind enough to dismiss any soldier who has recovered from a major cancer, giving him a new life? The decision lies in the hands of the Medical Review Board. Fingers crossed.

A Blessing In Disguise

Unfortunate events may fall upon you, but take a look again, it may be a blessing in disguise. As I excused myself from work for leukaemia treatment, I had the opportunity to spend time with and take care of my ailing dad. This was important to me, especially when I was hospitalized and away from home.

My dad is hardly mobile nowadays due to the unbearable pain whenever he moves. As such, he could not visit me at the hospital. A few days into my third cycle of chemotherapy, he was hospitalized for pain and breathlessness. I was so afraid of losing him. But he remained strong and battled with the illness that brought him immense sufferings.This is something I have to learn from him.

For the past three weeks, I have helped to relief my mum, the main caregiver. By sharing the house chores and listening to her, I was able to reduce stress and the amount of work my mum has to shoulder. She also gets a chance to take a breather while I looked after dad.

Dad stays in bed most of the time. I would bring the newspaper to him, remind him to take medications, and give him a good massage wherever he complains of pain. As a patient myself, I knew how comforting it is to have someone with you when you are weak. These are simple things that anyone can do, but nowadays, how many of us can take time off work to take care of our parents (or children) ourselves?

Every night, I pray that his cancer cells would disappear miraculously so that he will not suffer from any pain and our family can spend more happy times together. Will the universe conspire in helping me to achieve this?

Whatever happens, I am glad that I had the time to do what is important to me. And I am also blessed with a girlfriend who’s understanding and listens to me all the time. I could only keep counting my blessings.

What are your blessings?