6th Day - Current Cycle

Yesterday was the last day of the five day chemo regime. Min Ser has been taking it pretty ok thus far. He eats, though small portions. He still feels hungry, which is good. But he is requesting for lighter meals tomorrow onwards. We have been blessed with home cooked meals every lunch and dinner. Primarily for Min Ser, but there is usually more than enough for me too. Our dear cooks and food deliverers are the in-laws, relatives, aunties and folks from church.

He feels tired and rests most of the time, no obvious or adverse chemo effects as of today. Doctors have doubled his GCSF jabs, as his counts are expected to drop rapidly. The drop and recovery is expected to take 3-4 weeks post chemo.

Chemo Regime

Chemotherapy started in the afternoon.

The regime is five days of Fludarabine 30mg/m2, AraC 2000mg/m2 and Fligrastim (G-CSF) 300mg/m2 shots every night. Mixoxantrane 8mg/m2, for 2 days.

So far so good. His cough has subsided quite a bit, and he feels not too bad today. Appetite is ok.

Mixoxantrane

Malaysian Stem Cell Registry

Sue Min and I paid a visit to the Malaysian Stem Cell Registry (MSCR) yesterday. Well, there's been a nagging thought on my mind this past few days. I felt guilty having procrastinated on registering as a stem cell donor as I've been meaning to, but just never put the effort into it.

But every since realising that Min Ser very well needs another full match, I felt compelled to register as maybe I may just be someone's full match as well. So I called to come in at 3pm, and Sue Min kindly offered to accompany me as mum was with Min Ser.

I had already called in the morning once Min Ser was admitted into the ward. I called the number provided on the brochure. Initially the receptionist wasn't sure what I was asking for, when she finally mentioned "daftar stem cell donor" and I said "Yes!". I was then asked to hold, and was passed through 2 persons, and the last person gave me another number to call with a direct extension (number at the bottom of this post). I tried calling the number but it was engaged. After the 5th try, someone picked up. As it was a Friday, they were closed from 12 - 2.45pm. So I mentioned I'll come in at 3pm. Operating hours are from 8am - 4pm.

MSCR is at Institute for Medical Research on Japan Pahang, just beside Hospital KL (it's on Waze). The grounds are big, but the road is really narrow, with no empty parking spaces! Sue Min was in the car when I went up.

I was to find the "Bilik Gerakan". Asked the first persons I saw, but they didn't know where it was. Eventually called the number (at the bottom of this post) and was directed to the floor above the "Makmal Haiwan". (Yellow arrow in the pic below indicates roughly where the room is).

Location of the "Bilik Gerakan"

MSCR

The "Bilik Gerakan"

Goody Bag

The "Bilik Gerakan" is basically just an office. With files and desks. I was asked to fill in a form with my contact information and a 'yes-no' questionnaire (likes the ones you fill in when you donate blood). 10ml of blood was collected, and then done! Pretty fast. As we still had time on our hands, Sue Min thought she might as well register. It seems that even though she has donated before, she is not automatically on the registry. So she went up as I waited in the car for her.

Unfortunately, there is less than 24,000 people on the Malaysian Stem Cell Registry to date. And it seems so far 7 matches were found and arranged.

It takes a month to be on the registry as they are short of staff and the lab takes time to categorise the blood sample.

If you are 18-50 years old, in good health, and reading this, although inconvenient, please do make the time to register. You may never know that you may be able to save someone's life.

Contact Details:

Malaysian Stem Cell Registry

Institute for Medical Research

Jalan Pahang

50588 Kuala Lumpur

03 2616 2581 (Bilik Gerakan)

03 2616 2666 (IMR)

GPS: 3.169633, 101.698809

Admitted Today

We're in the hospital now, just admitted. The hospital arranged a nice spacious single bed room in ward 8B for Min Ser.

A femoral catheter is now being put in place to easier deliver chemo and meds as his peripheral veins are shrunk due to the previous rounds of chemo.

Thank you for all the prayers support and love. We know it's sad news for many as well as he was doing well, and the turn of events is really quick sudden.

It's a tough time for us as a family and different ones are helping in different ways. My parents are taking care of Jo to free Min Ser's parents to visit everyday if they want to. Needless to say, they are taking it the hardest. As a parent myself I can truly understand. Our children will always be our baby no matter how old.

Though the situation seems grim, there is always hope and God has personally given me the peace that everything is in His hands, and we will be ok.

Not so good news

I have some bad news. Min Ser's leukemia has relapsed, and quite aggressively too. 35% in his bone marrow since a month ago when it was at 0%.

We met with the doctor today at Ampang Hospital and the steps to remission are basically chemo first and then another transplant from a new donor. Conditioning pre transplant has yet to be decided as Min Ser can't take another total body radiotherapy. Chances of remission post 2nd transplant are 20-30%.

Min Ser has decided to go ahead with chemo first. We've pretty much prepared for the bleak possibility that he may not make it to full recovery, but also hoping for the best, knowing God has and can perform miracles.

Min Ser will be admitted sometime this week or early next week.

Do keep us in prayer:-

1. That Min Ser will make it through the cycle of chemo. Stronger then previous cycles. If mortality rate then was 5% now will be 10%. When before, recovery for his blood counts would take 2 weeks, this cycle will take a month.

His body is also weaker now with persistent cough and his platelet count has also been dropping. We asked if it would be advantages to wait till he recovers before going for chemo, but due to the aggressiveness of the leukemia, he may not recover significantly. Doctors suggestion is to do chemo as soon as possible.

2. To find a full bone marrow match amongst the International community. Preferably somewhere within the region. Ie: Malaysia, Singapore, Taiwan, Hong Kong or China. The percentage of finding a full match is 50%.

3. Doctors to come to an accurate decision on conditioning treatment needed for bone marrow transplant.

Relapse!

Some not so good news. Min Ser's latest biopsy from the EUS and the latest bone marrow test indicates there is a relapse.

Initially it was suspected GVHD, but after a more thorough staining was done from the biopsy, on Friday we got the news that the biopsy shows traces of myeloid sarcoma (chloroma) the same cancer cells caused by AML. Last Friday itself, Min Ser had a bone marrow test in Ampang Hospital, and we got the news today, that a relapse was confirmed.

As tomorrow is a public holiday, we will be going into Ampang Hospital on Wednesday to discuss the next course of action to be taken. Keep us in prayer!

Bone Marrow Test tomorrow

Min Ser has been discharged from SJMC. Result from today's EUS (endoscopic ultrasound) tissue samples are not out yet, but according to our doctors, the swelling seems to have lessen, and it does not appear to be an infection or tumour like. Which is good to know. Though it still does not explain what has caused the swelling. Thus a more comprehensive biopsy result should help.

So... based on the process of elimination, that would leave GVHD (graft versus host disease). Which is not unlikely to happen, and according to our haematologists, some GVHD is not a bad thing.

But before we start treating for GVHD, Min Ser will be undergoing a bone marrow test tomorrow at Ampang Hospital. This will be his 4th bone marrow test post transplant. If this BMT + today's biopsies from the EUS rule out a relapse, then the doctors can focus on treating for GVHD.

All in all, it's been a long week in hospital, but glad that we are coming closer to treating the problem. As usual, praying and hoping for the best!

Still Undiagnosed

Biopsy result for the samples taken on Wednesday came out yesterday. There is no signs of tumour cells, but the mystery causing inflammation in Min Ser's bile duct and stomach is still undiagnosed. The only thing noticeable is that there are a small amount of lymph nodes near the bile duct. Though it could even be lymphatic vessels (not very clear from the CT Scan). There is also slight thickening of the stomach lining.

Initially the next step was to conduct an EUS — endoscopic ultrasound to collect better tissue samples. But the plan has been revised to have a PET Scan first Monday morning. This will help isolate the kind of lymph nodes there are. An EUS may still be needed, but that is pending on the PET scan results.

So yes, it's still a mysterious ailment at this point. The doctors have yet to rule out a relapse, and are also keeping TB in mind.

Min Ser has been having slight spikes of fever. He also feels hungry often, but can't eat much at one go. He finds it hard to sleep at night as he is itchy as he has been having skin problems even before this incident (previously eczema now some slight fungal skin infection), but jaundice has also been known to cause itchiness.

He is now on antibiotic drips, panadol, anti-fungal cream for the skin, and the usual cyclosporine.

Jaundiced again

We are now in hospital. Min Ser is currently resting from some procedures done. What brought us here? Well continue reading...

Min Ser presented signs of jaundice last weekend. This was how we discovered the tumour related to leukemia last year. So on Monday, we went to Ampang Hospital for a blood test & liver function test. Blood test result were normal, but liver function test confirmed that there is something causing the jaundice. Dr Chang mentioned that we should get an ultrasound done, and probably an ERCP (scope) to insert a stent and collect biopsy samples of affected areas. We decided to do these procedures in SJMC as the earliest ultrasound slot in Ampang Hospital was 7th May.

Min Ser was admitted to SJMC on Tuesday morning, having made an appointment with Dr Sharmila (the gastroenterologist we consulted with last year). An ultrasound and CT Scan was done. The scans show that the bile duct was indeed tight causing the ducts in the liver to be dilated.

An ERCP was done yesterday, stent inserted, and biopsies taken. Biopsy was taken from the bile duct area as well as the stomach. The stomach didn't look healthy. It looked raw and inflamed (I watched the video of the procedure. I'm not a doctor, but can tell that it doesn't look good) over isolated areas.

After the ERCP, Min Ser was in quite a bit of pain due to the stent. He was given painkillers, but as a precautionary measure an X-Ray was taken. 1 of the 3 X-Rays initially indicated that there may have been a perforation in his stomach/intestine caused by the procedure, which would unfortunately require surgery to stitch back. Thankfully after a follow up CT Scan, the scans shows that there was no hole, so no surgery required.

As of today, the results and the procedure has been somewhat similar to what we underwent last year. The only difference is that his stomach is effected. We can only wait for biopsy results to be out earliest tomorrow, or Saturday.

If it's tested positive for myeloid sarcoma, that would mean there has been a relapse (seems it's still possible to have an extra medullary growth before it is detected in the bone marrow). In this scenario steps will be taken to get back into remission. If the test is negative, then an EUS may be scheduled for more biopsy samples to be taken to diagnose the problem.

So now, just rest, wait, and pray for the best results.