Tag Archives: chemotherapy

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.

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.

Hair for Hope 2012

Over the past 11 months of cancer fighting, I’m overwhelmed with gratitude for the help and support given to me. In the process of graciously receiving from others, I’ve learned the beauty of unconditional giving. With the latest news of my health gradually returning, it dawned on me that perhaps it’s time for me to be on the giving side.

Recently, I saw on Facebook that Hair for Hope 2012 (HFH) is opened for registration. HFH is turning a decade old this year and it has a growing number of supporters over the years. I remembered last July, after my diagnosis, Ewan, LeRoy and my brother supported HFH as a walk-in shavee. Their shaven-head raised curiosities among those they’d met, and with further elaboration, they’d helped spread awareness on children cancer. It goes to show that the initiative is meaningful and it is very successful at raising awareness for its cause. Besides promoting awareness of childhood cancer, the act of shaving bald serves to tell children with cancer and their families that they are not fighting alone, and that its alright to be bald. The monies raised will help to fund the programmes and services that the Foundation provides, for example, counselling, caregivers’ support, therapeutic play, financial assistance, palliative & bereavement support and etc. I believe the event will most likely see volunteers and donors stepping forward to offer regular services and donations, thereby creating a supportive community for the beneficiaries.

According to the statistics on HFH website, the most common age group of newly diagnosed children in 2010 is between age 0 to 5, with leukaemia as the most common type of childhood cancer. I could imagine how the parents would feel upon receiving the “life changing package” that slowly unravels along with their children’s diagnosis. Shock & disbelief, emotional, worries about treatment and prognosis, work disruption, financial stress, caregiving stress and etc which all sums up to two words, life changing. The young patients will never understand why are they different from their peers – bald and always away from school due to regular hospitalizations – and why do they have to tolerate the side effects from the harsh treatments.

As an adult leukaemia patient, I’ve received a similar “package” together with the diagnosis as well. Chemotherapy, in my case, was done inpatient and each hospital stay averages about four weeks. The poor immunity that arises after chemotherapy, may result in infections that can be fatal and thus I had to be isolated in single room. Loss of hair occured in patches, and unlike a clean shave, it’s hardly linked to style or fashion. My hospitalization bills have added up to over S$80,000, and that’s excluding the clinical tests and appointments after discharge. Too many to mention.

However, I’m very grateful for the encouragements and support from my family and friends, the excellent health care standard and services provided by the SGH Haematology team, the counsellings and financial assistance provided by the social workers, the understanding and support from my company and colleagues, and the list continues. With their help, I was able to focus on treatment & recovery and change this “package” to greater hopes and a better quality of life. I believe that’s what the Children’s Cancer Foundation is capable of doing in helping the children with cancer and their families.

I’ve been hanging on the thought of becoming a shavee for HFH 2012. As a registered shavee, I can raise funds for Children’s Cancer Foundation by getting people to pledge their donations in support of my cause. For the past one week, I couldn’t decide on the amount I want to (or can) raise. I was afraid of not meeting my target and I didn’t want my family and friends to feel obliged to give. But today, I found a compelling reason to make a decision and register for HFH 2012. April 17, coincidentally, is my late father’s birthday. We’ve lost him to lung cancer last December. He was a strong fighter and he’d taught us that regardless of the results, always give our best and never give up. With this in mind, and on this special day, I decided to challenge myself to raise S$10,000.00 for CCF by spreading cancer awareness to my contacts and, hopefully, more. Papa, this is for you!

For the kindess I’ve received, I’d like to take this chance to pay it forward. Please support Children’s Cancer Foundation and my cause by making a donation here. Alternatively, you can join me for a shave and help raise funds for CCF by registering today. Lastly, please help to spread this message on children cancer to people you know and inspire them to get involved.

Hair for Hope 2012 will be held on 28 – 29 July 2012 at VivoCity Central Court

See you there!

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!

World Cancer Day 2012

According to the Singapore Cancer Society, cancer is the number one killer in Singapore! 1 in 4 Singaporeans dies of cancer. Every day, 12 people die from cancer and 28 people are diagnosed with cancer.

There are many things you can do to prevent cancer from happening to you:

Quit smoking | Eat lesser red meat | Exercise regularly | Healthy lifestyle | Apply sun screen | Go organic | Regular health screening | Fight pollution | Wear PPEs | Smile & stay happy | Fight obesity | Reduce alcohol intake | Raise cancer awareness

Treatment may have many undesirable side effects. For me, the salvage chemo treatment has caused patchy hair loss, a second time for me. The following illustrates why prevention is better than cure!

After showering, I looked like an old man!

My fingers run through my hair and I collected this!

I made a mess on my head.

I decided to tidy things up a bit, with mum’s help.

Now this is what I call neat and tidy!

Don’t wish to be bald like this because of chemotherapy treatments? Get something done today!

 

4 February 2012 World Cancer Day – Stand Up and Do Something

Help spread the message!

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!

3rd Cycle Experience

I have just been transferred to a high dependency single room yesterday. Lying comfortably and inclined on the bed, I finally found peace (and wifi signals) to blog about my past one week of chemo experience.

In this round of chemotherapy, I was given six high dose cytarabine (HiDAC), each over two hours at an interval of 12 hours on alternate days for six days. There were no horrible side effects other than a bloated stomach that caused a loss of appetite after chemo. Every time after chemo, I would look forward to the nurses removing the drips on me and changing the yucky-tasting anti-fungal syrup, itraconazole, to its capsule form. Next would be the ‘upgrading’ from a 4-bed room (a.k.a HDB flat) to a high dependency single room (a.k.a. Holiday bungalow).

While I welcome the room change, I do miss my new friends and the random discussions we had in the previous room. Bed 1 always disturbs the nurses and shares his life experience with us. Bed 3 came in looking gloomy and is always surrounded by friends who prayed with him for good treatment results. Then I learned about his prognosis, a 10% survival rate after bone marrow transplant. I did not know what to say, but in my heart I wanted to cheer him up! Bed 1 and I talked and joked with him daily, but whenever he was reminded of his diagnosis and prognosis, he became gloomy again. Now that Bed 1 and I have transferred to single room, I hope Bed 3 will embrace optimism and not think too much. Bed 3, be strong and put up a brave fight! You can do it and you will make it!

 

3rd Cycle – Halfway there!

I’ve hit the halfway mark in my entire course of chemotherapy treatment! Feels good to be back in a familiar setting – the very first ward and room that I was admitted to two months back for my first cycle. Some of the nurses who remembered me came to say “Hi TJ!”. It’s embarrassing but I can’t remember the names of some of the nurses who have taken great care of me then.

There’s nothing much going on today. I just went through the standard administrative procedures and set a plug on my right hand. Chemotherapy will commence tomorrow and the doctor is arranging a date for me to have another central venous catheter inserted so that I’ll be free from needle pokes. Hopefully there won’t be infection this time round and I can maintain this line till the end of the course.

My present roomies are very positive and jovial. The atmosphere is lightened by their jokes and laughters unlike my previous stays whereby patients gave out yawns of boredom, painful moans and longing-to-go-home sighs. Guess my stay here is going to be a pleasant one this time! 加油!