great meetings

There were 2 great meetings for 2 consecutive weekends for Max Family and definitely has added another great milestone to the group achievement.

First, for the first time our charity visit happened at kids orphanage home. Smiles and laughter filled the house especially during the coloring and games session. We were so touched knowing that all these kids has been deprived of love and we do hope that our presence has brought ' a sincere piece of love' to share with.

Second, yesterday, I met with a quite number of JB CML friends and caregivers. Successfully, at the end of the session, they have formed their own group. This has been Max Family's vision i.e. each region/ centers to have their own small local support group and to work independently in the future. This also will make them self-empowered at a group level and hopefully they will be able to create a sustainable CML awareness at their local areas.

It just reminded me on how me and a few others has started the group 3 years ago.....:-)

Oh yes, my lung function test has showed some improvement from the last test during which I had a bout of cough attack....

charity visit

I just got totally recovered from bad coughing episode which had left me in bad effort tolerance and breathless at certain times. The doctor advised me on longer leave so I could get better and enough rest. Now, I felt much, much better but still have to go slow on certain things and not to overexpose myself.

Having said that, me and my core group are ready for another significant event that we use to have around this time of the year... outing for a charity visit. This time, we feel that we should change the way we do things. We have plan to go to a centre that we think has possibly been least visited and taken care of from the public and we have found an orphanage somewhere around.

To anyone here who interested to contribute, do not hesitate to contact us at www.maxfamily.org

what is a support group

When I first got to know that I have a leukemia, I almost confused with my own reaction.To be exact, I did not know how should I react. Slowly I noticed that a lot of emotions started to come in... feeling sad, worried, afraid and anxious to know what was the next thing that could happen to me. Frankly, I did not turn into tears until I started to break the news to my love ones, one by one.

I presumed that I will be okay since I am myself a doctor, and thinking that I am still fortunate to be always in a situation where everything done on me was in the shortest time and most convenient possible. I never felt that I need to share with other people burdened with the same problem like mine. I knew that I could have control on myself, I could find answer to any issue and think I could walk this journey alone without trying to find somebody like me to share the problem along.

Until one day, someone and few others like me, sit, talked and shared things that we have in common... i.e. living with cancer. From then on, I started to realize that it could wasn't me that need helps, but out there , there is always somebody who desperately need to talk to someone. Someone whom they feel could understand their feeling and relate what they are going through.

Now, I have made my own conclusion. Share what ever piece of cake that you have, you are making someone happier. That is what support group meant for..... it is a place to give and to receive...

CML awareness month

My dear friend and followers, on October 1st, the Max Foundation open an awareness campaign to support CML survivors and each other around the world, by uniting people everywhere in the fight against cancer. Read on to learn more about how you can participate no matter where you live at:

www.themaxfoundation.org

summary after 2 years

Post Transplant Period: 2 years and a few weeks

Remission Status: 3 times molecular testing: Undetectable for BCR-ABL protein

Current Treatment Status: Still on Glivec and to maintain indefinitely until next good news?

GVHD Status: Since last attack on the lung, no major issues

Blood Group: Must have converted to A+ve (my donor) from O+ve

Weight: Back to pre morbid status

Height: No loss of height

Hair: Longer but not as thick as before transplant

Skin: Getting fairer again from Glivec effect.

Appetite: Better

Career: Back to work almost one and a half year now and planning for subspecialty training attachment next year abroad

Stamina: At par..but can be down after exerting too much

Experience: So much to share........

selamat hari raya!!!

latest follow up

Retrospective entry:

I went for follow up today and getting my 5th time of 6 months course of intravenous Immunoglobulin (antibody) to boost my immune status. Not to say that I never appreciated how painful to be poked a few times for IV line but getting 3 times attempt make me more understand how painful it was especially when I had it accidentally being poked on the sensory nerve on the wrist! It felt like being struck by an electric current...

Owing to my poor lung function performance (no improvement), the hematologist feels that I should be on further gradual tapering dose of steroid. And together with Glivec which may depressed the T cell (white blood cell), I must really caution during these time of potential H1N1 exposure. I was being reminded to take anti viral to Influenza should I developed flu symptoms.

 

blowing time again

I went for another lung function test yesterday. Blowing through the gadget a few times before getting the best result. My coughing which started the day before got a bit more after the test. I must have attempted trying to get the best blowing...

In the end, the result still not as good, from the previous test. Anyway, it was not a significant change, according to the respiratory physician. This result is so much important and my hematologist will really depend on this result as a guide to tailor the appropriate treatment and based on my progress...

july workshop

As now we have to ensure a regular workshop every 3 to 4 months, today we achieved another mission and as usual, we had another significant event in Ampang Hospital. After the introduction of the workshop, I had a chance to give a short talk to the audience on what is a support group all about. Why we should have one, whom it is meant for and how can everyone in the CML community can uphold the group. I also showed to them our 'handsome achievement' so far... after exactly 3 years it was first initiated, we had 16 workshops (not include today's), 2 outstation camps, twice charity ward visit, 2 international event, 5 issues of newsletter, our website and a blog. 

The event continue to follow with an art therapy, a session where we encourage audience to express themselves onto a piece of paper and share them with others in the hall.

During this workshop also, a few press media came to give a coverage. We do hope that we will better known to the public and make people aware of our presence in this challenging  world of living with leukemia.

Finally I managed to persuade my hand to write something in the blog. I have been 'lazy' lately even though I have no reason to be. After the latest version workshop in the east coast last month, I was busy preparing for my fellowship exam which, thankfully I passed. Now I can be half peace in mind and just need to full fill a few more requirement before I could go to San Diego for my attachment next year.

My latest follow up showed that I still keep in remission (molecularly). Means that the cancer stem cells are below detectable level. Even though my lung function test did not improved so much, my effort tolerance has been quite okay . I can go back to previous best level of physical exercise. Yes, I have gone back to the gym past one week.... at least at the doctor's advise.

and another one in the east coast

Me and a few more group members of Max Family just came back from east coast yesterday for another patient's workshop. It took place in HUSM (the university hospital) like where we did last year.

The crowd was a bit smaller than KL workshop and a bit cold especially the initial response. I thought may be language and dialect was the barrier. Towards the middle of the event, things got more comfortable and patients and their caregivers started to get more responsive and lots of people were touched during a session where everyone of them introduce themselves and share their story. I think anybody can express themselves when they are given a chance to do so. I did chat with a few elderly patients (whom usually speak in a very thick dialect) but to my surprise, they were all very warm and friendly. More than half of them had attended last year event and this time they were really welcome our visit.

We ended in the late afternoon, tired but still excited with the response by the the east coast patients and they are waiting and looking forward for another event.....

another workshop

Yesterday we had another workshop but this time we had it in University Malaya Medical Center. It was another great event and half of them were those who never attended any workshop. They felt so excited and touched by the effort that being put together and feel this could be an excellent platform to improve their life living with CML. As usual, time was not always enough to cater their overwhelming questions during the doctor-patients session.

Me and a few of the Max Family group member are going to the East coast for another patients workshop in Hospital Universiti Sains Malaysia. We hope to do the best for them tomorrow...

good news indeed

I went for my follow up today and as I reached the hospital, the doctor has actually planned a repeat CT Scan for me this morning itself. So I went straight to the radiology department and got it done for the second time (hopefully it was not an overdose of radiation). Apparently, the previous CT was done not in the expiratory (exhaled) phase. For that matter, it will not picked up collapsed bronchioles (lung smallest airways tree) which was not seen  from the previous CT. This may ascertain the diagnosis of Lung GVHD manifestation i.e. Bronchiolitis Obliterans)

I had a full Lung Function Test yesterday after a few times there were electrical black out during the process. The process involved inhaling and exhaling my breath repeatedly and I almost exhausted after everything was over. 

The findings were discussed with the doctor today and given my previous baseline value (before the transplant), it showed some significant reduction in my lungs function. Buts, still its okay.... I still need to continue taking steroid for a couple of week more before started tapering the dose over 3 to 6 months......

resting at home

I have been at home since two days ago and trying to catch up with my routine. I have noticed that I am more breathless when I exerted my self even with just normal chores. My breathing become fast and I sweat a lot and even drenching. The early morning cough is much less but can sometimes disturbing...

I went to the National Respiratory Center today, just to know that the appointment for full lung function test was not properly done for me. So have to come back again next week....

i was not there

I missed another CML patient's gathering for the 3rd times. I was supposed to fly to Penang for a patient's camp on the same day that I got admitted. I was quite upset, since this is another big patient's gathering for the northern region and we have lots of thing to do during the event. 

Anyway, the rest of my friends has done another amazing job and it all went with superb response.

in room 27 ampang hospital

Sitting alone in this single bedded of Room 27. Reading through from the net of what I might going through based on symptoms that I am having now.

Knowing that I have been this far (almost 2 years) from post transplant days and for most of the time that I am reasonably well, I was quite denial that I might be having another post transplant issues i.e. transplant-related lung problem. Even though it is not confirm yet (waiting for CT Chest, repeat Chest X ray, Lung Function Test etc), the fact that I am post transplant person, it is better to think that it could be related. So the doctor will be more vigilant and hit the problem at the very early stage, before it become irreversible....

Spiritually, I must admit that it has let me down a bit. Especially when I have plans ahead pertaining careers, the support group that I am leading now and not to mention my whole family and friends.

The consultant hematologist just came in and this time I am more prepared to ask questions. He reminded me that he need to see the CT Lung result before making any conclusion. I would also need to go for Lung Function Test to add more information. He also outlined the treatment plan should the conclusion has been made. Basically, immunosuppression will be started and to boost immunity and prevent frequent infection, I ll be getting Immunoglobulin starting from tomorrow. 

Physically, my breathing is still not like the way I normally feel. I can still feel some restriction at the end of each inspiration. Coughing in the early morning and chest uneasiness that awake make last night.

i see you for 24 hours

Two days before ICU admission:

I was having flu and cough for the third times within a month. My body started aching.

A couple of hours before admission:

I was getting ready for work when I got increasing shortness of breath and within minutes, it got worsen. I have to call my wife who was still in the hospital for on call duty. She rushed home and brought me to hospital immediately. In the Emergency, I was pushed to the resuscitation area and everything was swiftly done to make me comfortable.

In the ICU:

Things were better by the time I reached ICU. I was put with all sort of monitoring cables and lines. The next few hours, one after another, doctors came in and examined me, including my hematologist. Most of them felt that I had a pneumonia but my hematologist added that he need to rule out lungs GVHD (graft versus host) i.e. Bronchiolitis Obliteran. I hope it is not. I was started on antibiotic and anti viral infusions.

Now:

I am already in the normal ward. Feeling much better without oxygen support. But need to stay longer for antibiotic and anti viral and also I need to go for CT Lung next week to confirm what is going on.

frequent infection...

I have noticed lately that I can easily caught by viral-kind like infection i.e. intense muscle and bone and joint pain, chills, rigor and even intermittent fever. I think it was not more than 2 weeks ago when I really had bad symptoms together with breathless chest pain before I got it again 2 days ago. But this time it was a shorter course without any treatment.

I told my hematologist when I met him during follow up yesterday and he said, it could be a 'normal' happening to a person who's taking Glivec regularly. Glivec could to some extend may have interfere T lymphocyte  (white cell) function that used to fight common infection. He continues advised me to take  a course of antibiotic whenever I have any sign to suggest that it is bacterial infection. 

finally reached home

I found this in Barcelona

I spent a day and 2 nights in Barcelona at my friend's place. Not like in Lisbon, here I really had great time since he brought me to all interesting places and we just walked from one place to another the whole day. We went to the Olympic Stadium, Sagrada Familia, Arch de Troimph, Gaudi park, the marina and every street in the city. Finally we ended up walking for almost six hours.

Since he stays at really at the center of tourist street (Las Ramblas), I can see lots of interesting things just down stairs away.  This street has lots of art stuff. From painting, street musical band and even pantomine (human statue).

I flew yesterday and reached home safe. Tired but relieved. 

ola lisboa!

I managed to skip early from the meeting today as the afternoon session was for meeting for members of the society. So, I took the chance to quickly changed and got down to the street for outing. Knowing that I have very little time, I took the city tour bus (hop in and hop off) for city sight seeing. However, I did not hop in and off since I was in the second last bus of the day! So the pictures that I took only taken from the top of the double decker bus. Still interesting though!

I got down at the last stop of the tour bus, took a short walk in the commercial and tourist street, bought somethings to bring home before I took the normal bus and got back to my hotel before it's dark....

transit in amsterdam

I am in Amsterdam airport now and waiting another 6 hours before depart to Lisbon. I ll be there for 4 days attending the European Pediatric Orthopedic Meeting before drop by Barcelona to visit my friend who is doing attachment there.

It s quite cold here and I hope the sore throat that I am started to have now is not getting any worse. I have noticed that I could easily get sore throat and flu recently. Hmm.. I forgot to bring antibiotic along...

MaxFamily is holding a small workshop in the east coast (Kuantan Hospital) on this weekend and again I could not join them. Anyway, there will be a few more workshops coming ahead and I will make sure I am around. 

it's 0% !!!!

I got the email which I 've been waiting for the last couple of days. It's from the doctor whom I get the blood test done in Singapore last 2 weeks. The result showed zero percent of cancer marker detected!!! I was so much excited since the previous results for last one year after the transplant was so much difficult to get it down to zero level.

I presumed Glivec has somehow able to make whatever the result down to this level now. Thank to God. Thank to my dear doctor (his prediction has always been true), thanks to my family, friends for their continuous love and support.....

To my CML friends, whatever the hardships that we are going through, there is always a happy moment along the way...

first workshop for 2009

We will start to kick off our program this year with our workshop in Hospital Ampang this coming Saturday 28th Feb 2009. Unfortunate for me that on last minute I have to go for a meeting in Port Dickson representing my department for hospital meeting. So much upset especially we are planning to unofficially launch our society to our patients during the workshop.

Anyway, I believed the rest of my friends @ core group members can do without me around. So sad that I ll miss the exciting moment... Good luck my friends. Now we all have to work harder.

blood test and short vacation

Me, my wife and my 2 kids are going to Singapore today. I am meeting the Singapore hematologist at Singapore General Hospital for some consultation and blood test. Since I used to have blood test sent and done in Singapore all this while, this time I need to have another one sample taken 'fresh' from my vein. The result later can help in countercheck the similar test if Ampang Hospital started their own. If the value has not much difference, I don't have to have six monthly regular blood test sent to Singapore anymore. 

I took the chance to take my family along to have a short holiday....

Ooh, last night, me and my group celebrate after MaxFamily Society has been approved as a registered society.

very much awaited good news!!!!

Guess what? MaxFamily is now a registered society!!!! The letter got to me today and theofficial  registration date was 30th January. After almost 2 years waiting, amending and keep amending the documents for application, we are now a legal society. 

In another word, there s a lot more work to do.....but now I need to go to sleep first because it s late now. Tomorrow. I ll get up with a whole new spirit and enthusiasm.