Tag Archives: leukaemia treatment

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.

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. :)

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 – Stem Cells Infusion (Day 0)

Stem cells infusion day is also known as the patients’ new birthday as they have been given a new lease of life. Now I can celebrate two birthdays in a year, how cool is that?

Breakfast was served but I was still feeling bloated and nauseated. I thought that my body (and the new stem cells) needed the nutrition and so I must try to eat. An idea came… I swallowed two spoonful of my food and soon enough I was having the vomit bag in front of me. It felt great to let out the gases trapped in the gut, I had no problem finishing the entire breakfast set then.

“Dear nausea, I can’t stop you from emptying my stomach BUT you can’t stop me from filling it with food either!!!”

The stem cells were ready by late afternoon, freshly harvested from my brother’s blood. There was no operation involved as pictured by many. It was just a simple infusion just like any blood and platelet transfusion.

My brother kept a log of his peripheral stem cells donation on his blog. Peripheral blood stem cells donation is now preferred over the invasive bone marrow harvesting which requires operation. Now, saving a leukaemia or lymphoma patient who requires bone marrow transplant is almost similar to platelet donation. I am lucky to have a complete match with my siblings. There are many patients worldwide holding on to a hope of finding a full or closely matched bone marrow. You can provide a gift of tomorrow!

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!