Tag Archives: bone marrow transplant

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.

Day 98

I was quietly celebrating my life after 1 year of diagnosis. Every thing looked good, just the way we wanted it to be after the transplant.
But just two days before Day +100, we found 0.6 x 10^9/L of blast in my blood.

Where did they come from?

The high dose chemotherapy should have wiped out all bad blood in me. In April, I was totally cleared of leukaemic cells. My blood cells and bone marrow then were all matured from the stem cells my brother donated to me.

What went wrong?

I can’t believe this is happening to me, again. I dread the thought of chemotherapy and bone marrow transplant. I dislike hospital stays.

My hope and optimism are consumed by this devil, every time it returns.

 

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!

Precious Week

Finally got discharged last Thursday. Happy to have Qipei accompanying me home. Little niece was home too. I thought she would not recognize me because of my skinhead but she did not take long to warm up with me. I could tell mum was happy and relieved that I got home. As I was discharged in the afternoon, I did not get to eat the hospital dinner – Western: Mutton and tofu burger with french fries. It was a meal upgrade from Class B2/C to Class A/B1. But who cares, I had the best home-cooked dinner with my family, the best dinner for 2012 thus far.

Niece came over almost everyday except for weekends and I had fun babysitting her. Mum cooked for us almost every meal just to ensure that I am eating right and have good nutrition. She worked long hours without complains and kept telling me to rest. Brother and I just helped her with babysitting and some simple chores whenever we could.

We have not had a steamboat as a family for quite a long while. I suggested having one when I was in the ward. We almost went into preparing for the steamboat then sister suggested that we decided to go fuss free by eating out. So we pigged out at Mushroom Pot at Indoor Stadium. Part of the agenda was also for me to eat more and build up before the transplant.

The outpatient consultation on Monday was a happy one. Happy to know that the salvage chemo worked and the blast cells in the bone marrow was reduced to 1%. Note “the blast cells” and NOT “my blast cells” – I learned from a patient to talk in this manner as the baddies do not belong to myself and so they shall all perish! All the pre-BMT checks and clearance looks good and there is no need to fill dental cavities before the transplant. The entire schedule will be made known to me on Thursday 23rd Feb during a family conference.

Tuesday was my 4 year anniversary with Qipei. We lunched at Ding Tai Fung at Wisma followed by a hunt for flats (not HDB flats but shoes) around Orchard. No fancy gifts or celebration, we are just happy to have quality time together. We parted before she made her purchase as I had a family dinner later on. It was Ding Tai Fung at 112 Katong. Well, I had to assume the food were more hygienically prepared compared to Dunman market, our other option. It was a lovely day to have spent the time with my loved ones.

My siblings accompanied me for the family conference on Thursday. We were given the schedule and Dr Ho explained quite a few important things about the transplant. There was too much information, and most are not music to my ears. I suppose in life you gain some and you lose some. We went on to see a ‘showroom’ of the ward that I am going to stay. The only difference is probably just the positive pressure doors that helps to ‘clean’ anyone coming in so that they do not bring in any sources of infection. After the conference, brother and I head down to the admission office for financial counselling. As my CPF Medisave has only a miserable S$3k and Aviva only issued a S$10k letter of guarantee (LOG), the hospital requested that I place a $50,000 cash deposit for the estimated 45-days bill of $72,586. Luckily Linda helped me to request Aviva to reissue another LOG of higher value so that I need not ‘park’ my money with SGH. Hospitalization bills are costly, better get your health insurance early!

During BMT, visitors are strictly restricted to immediate family only. So I am spending the weekends catching up with some close friends! Hope to post some pictures here next week during my free time in SGH. This week is very precious to me, and I believe I have and am spending it wisely.

Preparing for Bone Marrow Transplant

Now that my white blood cell counts are on an upward trend, I am moving into the pre-bone marrow transplant (pre-BMT) stage. There are a couple of checks to ensure that I am physically fit for BMT. Some of these tests on the functions of my vital organs will help to develop a baseline which can be compared with post-BMT tests to determine if any body functions have been impaired.

Healthcare staff has collected 6 tubes of blood from me to test for diseases and antibodies (I was told).

My urine (collected over a 24-hr period) and one tube of blood sample was collected for kidney function test.

Dental x-ray was done yesterday and the dentist identified two cavities that require fillings and a possible wisdom tooth fragment that needs to be extracted. However, these dental care procedures can only be done when my platelet counts rise above 80k (19K as of today).

This morning, I had a MUGA scan(Multi Gated Acquisition Scan) to check on my heart function. The radiologist said it is comparable to the same scan I did in January 2012, which means I still have a strong heart!

I have also met up with a dietitian. Done a handgrip strength test with her and we discussed about my appetite and die. She told me that the total calories provided in hospital diets are less than what I require in a day. I was advised to increase my protein intake by adding milk supplement (e.g. Ensure) to my diet, drink 3 cups of full cream milk per day, and consume more food that is rich in protein. It would be ideal if I can gain another 3Kg before transplant.

So now I am left with a lung function test which can only be done when my platelet counts are above 50k.

The admission for conditioning chemotherapy and transplant is on 20th February. It’s day 31 in SGH and I am expected to discharge next week. Hope to spend some quality time with my loved ones before next admission. :)

Marrow Donation Options

I reached the Haematology Centre at 8.30am today to get my blood test done before the consultation appointment at 10.40am.

Brother later joined me for a Q & A session with Dr Ho about bone marrow transplant (BMT).

Before we begin, my doctor highlighted the presence of 0.25 blast in my blood which was not noticed a week ago. This is no small matter, as my doctor immediately scheduled a bone marrow examination around noon.

In our discussion, my brother was presented with two donation options:

1. Bone marrow – Donor is knocked out by general anesthesia and about 1 Litre of bone marrow is harvested in a 45 minutes to 1 hour operation. Possible general anesthesia risks, risk of puncturing the nerves, and pain could last for a week.

2. Peripheral Stem Cells – Donor is given granulocyte colony stimulating factor to increase stem cells production over a few days. The stem cells are then harvested by apheresis. There are two controversial studies on this method of harvesting – one reported that donor has a 5% chance of developing leukaemia in the future; the other study reported no such cases.

I could sense that my brother was worried about the risks involved. The decision to take on either option may have a long term impact in his life. I am deeply concerned about the pain or sufferings he may have to go through to save me. I am indebted to him for life.