Tag Archives: leukaemia treatment

Recovering from Salvage Chemo

Good afternoon! I am feeling fresh after a good nap and a nice tea break. Decided to do a quick update about the recent salvage chemo treatment.

  • Admitted into SGH on 11 Jan 2012
  • Done a MUGA heart scan before the chemo
  • Chemo protocol: FLAG-ida (Fludarabine + Cytarabine + Idarubicin) given daily over five days, except for idarubicin which was given daily by bolus over three days.
  • Side effects experienced: Nausea, itchy rashes developed on thighs and back, hair loss, rapid drop and slow recovery of blood counts, virus and bacteria infection.

I was warned that FLAG-ida is a very strong chemotherapy compared to what I had received thus far. True enough, the nausea effect was really disturbing but fortunately it was only during those five days of chemo.

A skin biopsy was done for the rashes and it was found to be due to drug allergy reaction. The itch was unbearable at times but the medical team helped me to manage it well with Sarna lotion, moisturizer and atarax.

I was pretty upset that my total white blood cell counts made a steep decline two days before Chinese New Year. I was hoping to obtain a home leave to have a reunion dinner with my family at home. The risk of infection out there was too high for me to leave the hospital. But I managed to have home-cooked food, cooked freshly by mum, and delivered by my siblings. That was priceless, I gobbled up everything my mum put in the tingkat.

Peiling, Wei Yuan and Mei Ying accompanied me on the second day of CNY. We played monopoly deal and the small mahjong tiles Wei Yuan brought. After we finished the games, I ran a temperature and was down with fever for two days. I had the worst chill ever, whole body trembling hard uncontrollably. The nurses had to switched off the air-con and cover me with four thick blankets. The culprit was later found with a simple throat swab – it was a common virus that caused running nose and cough. Thanks to Ribavirin (anti-viral drug) and procodin (suppressed my cough), I was well again!

Last Thursday (2-Feb),  I spiked a fever again. This time the culprit is Escherichia coli. As of now, I am still on antibiotics (Cefepime).

Today, Dr Yiu said I would have to stay for at least another 9 – 10 days to complete the entire course of antibiotics. My white blood cells finally rose above the 0.2 mark to 0.47! Happily counting down to going home soon! :)

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…

Life Changing 34 Days

34 days of confinement and I am finally discharged from SGH! This is quite an experience for me, a life changing one.

I remember the scene that mum teared when I told her it’s leukaemia. Devastated. It’s so cruel that she has just accepted her husband’s stage 3 lung cancer, and now, she has to accept her youngest son’s new diagnosis. The sight and thought of her crying breaks my heart. I knew to make her smile again, I have to be strong and positive – and it works! This is the power of positive influence!

Although the statistics for AML patients to going into complete remission look promising, I felt a need to have my girlfriend reconsider about our relationship. Qipei knew about the possible outcomes, but she believed in me. We want to go through this together and I am certain it will further strengthen our relationship.

The first cycle of chemotherapy (a.k.a. induction chemotherapy) aims to bring the disease to remission. Cytarabine and Idarubicin were administered, both intravenously, for 22 hours over 7 days and 3 boluses over 3 days, respectively. Of cos, anti-nausea and anti-vomiting (antiemetics) drug was given prior to chemo to prevent any nauseous feeling or vomiting. This cycle was rather gentle on me – only experienced bloated tummy and dry skin. The gassy stomach was relieved towards Day 7 and there was moisturizer for dry skin.

My platelet counts dropped after chemo and brushing teeth was a no no! There was an occasion after rinsing my mouth, in front of the mirror, I noticed some bits of cookies stuck in between my teeth. My itchy finger removed it and fresh blood flowed out from the adjacent gum. In the subsequent two days, my gum bled at various locations and they just refused to clot until what felt like a blood gelatin formed. I tried to remove these gelatin with my tongue and my poor gum begun bleeding again. The pseudo-jelly salty-iron tasting blood in my mouth was really yucky! I learned my lesson to go on soft diet and not disturb any clots when my platelet counts are low.

I was prepared for hair loss and I thought it really does not matter to me. First, it was finding strands of hair on my pillow in the morning. Next was seeing loose strands of hair on my palms after shampooing. The ultimate was when I sat on my bed and shook my head vigorously, strands of hair just fell off. I laughed. Then I botak-ed myself with mum’s help. It was cooling and not so demoralizing anymore.

A few days into chemo, I began to inform a few close friends. They came with well wishes, food, entertainments and good companionships. It was really heartening and morale-boosting for me – I wasn’t fighting leukaemia alone! A particular support that I must mention is from LeRoy and his family. Aunty Susan, LeRoy’s mum, blessed me with some wellness products to complement with my treatment. She also cooked a variety of healthy vegetarian dinners and delivered them to me almost every evening. And of cos, there were lovely messages from friends who could not make it to visit me. I felt loved and I saw genuine care and kindness from everyone. All these – priceless!

My life has changed. I am now living a life with gratitude, love, hope, and zest!

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.