Tag Archives: side effects

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.

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!

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! :)

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!