meeting my 'old good friend'

I went to the hospital two days ago for my regular follow up apart from getting my final monthly infusion of antibody (IgG). The blood test for CML marker molecule (bcr-abl) result from Singapore that was sent a month ago was also ready for review and I really anxious to know. This result will give me and the doctor an idea what to decide on next. Ideally, traces of CML marker molecule should not be detected after about a year after the transplant. In my case, the last 2 results within a year of my post transplant period was still positive but at the very low value.

So... the result is still positive (it is slightly lower than the previous one). The options (if the blood result still positive) were discussed during last follow up and this time around it was easier for me to understand and just follow the plan, that is to go back and take my 'old good friend' i.e. Glivec again, may be for a couple of year. It was not a hard decision though, since I had used to to it before.

SELAMAT HARI RAYA

Dear all Muslims

SELAMAT HARI RAYA AIDIL FITRI
MAAF ZAHIR BATIN

I do still remember what the feeling was a year ago when I was still in the recovery period when there were still a lot of restrictions. Let me tell you, at this moment when everything seems coming back to your life, you may not remember how hard it was during the difficult times and you may not even remember that you have gone through those days. That's why, always believe that at any time you feel it is so much difficult, there 's a lot more time where everything seems so easy. Always say thanks to Him.

AFTER ONE YEAR

Yesterday was my 'first birthday' since I was transplanted and growing with 'new blood'. It was 18th September 2007 when my brother kindly donated his blood. Looking back to all those days, it was full of emotions and I am glad it was not that bad, at least if I were to see other patients who may have more difficult journey. I would say it was a journey with amazing experience and having said that I always feels that I am always a more fortunate person despite the burden from the transplant and that is how I appreciate the whole thing.

And now after one year, I have got back my 'life'. I have started working and doing my usual stuff (operating and seeing my patients in the clinic- half of them were not realized my 'comeback' and those who did, ask me why I am not as 'white' as before!). I have gradually catched up with my study (I got an exam next year) and started to plan my fellowship attachment now.

I am also getting back on track with the CML support group and I guess there are a lot more to do. People and friends around me always tells me to take it easy and do not stress out. Yes, they were true since my physical and mental may not have reach my previous level, yet. I do always get 'bugs' and it will take a longer time for me to completely recover. But on the other hand, getting back to 'work' make me feel more healthier and lively. At least they see me like what I was before and more 'brightful'.

'down' for a few weeks

I have not been writing for quite sometime because I was not really well for the last few weeks. It took me longer time to recover from common flu and throat infection. Furthermore, I guessed my 'stamina' was also not that at par. I have been travelling a few times past few weeks and I noticed that I was easily exhausted.I took leave from work a few times during that time when it was really 'down' for me.

I managed to join the Hospital Sultanah Aminah, Johor Bahru small meeting with CML patients. Even though it was not like as big as our previous meeting/ workshop, it still means a lot to the patients and they really appreciated our visit.

Among the patients (half has gone back before picture session) with the doctor and us.

I also managed to attend my wife 'big day'.

Finally, selamat berpuasa to all muslims.

colours of hope

Another event for CML patients and their caregivers. Thanks to them for making this event another success. We took this 'get to gather' chance by organizing workshop and using art as one way to motivate them. We ve got Sahimi's (our comittee member and artist and his friends from Central Market) to help handle the workshop. It turned out amazingly and never knew that most of the patients and their family could be so expressive when they were given a chance to draw and show up their talent....

So much glad it' s another success

measles threat

My daughter is having measle. She had fever 2 days ago and when it start setlling, all those typical rashes came out. Immediately I knew that it would be a threat for me since all antibodies that I have from chilhood immunization lost after the transplant.
So, now I am in the day care getting immunoglobulin (antibodies) infusion for 2 days.

the latest result

I had a follow up the day before yesterday and had met up with the hematologist. The result to assess the residual disease (PCR for BCR ABL protein) that was sent to Singapore a month was ready. There was a slight increment in the level but having only one result to compare with (one taken 6 months ago) does not give any significant value. Furthermore the level is still much below desired level and I am still in the 'major molecular remission' i.e the amount of cell that still having the potential cancerous molecule is very minute. Anyhow, I will have another testing in another 3 months to see the progress before discuss on the possible options.

After a few days enjoying the anti fungal 'body spa' and anti fungal pills, I would say that there is some improvement from the extensive 'acne' that I am having. There is much less new lesion now. Otherwise, I could have a skin biopsy to confirm the actual problem.

it is fungal!

I met the dermatologist today. Afer she had a look on my face, neck and body, she was really convinced that it is a fungal infection. I can't really remember the scientific name but apparently this fungal is a kind of that usually resides our skin but since I am on immunosuppressive drugs (steroid), this organism is happily overpopulating and multiplying and producing acne like lesions.

I was given all kind of anti fungal i.e. bath soap, shampoo and cream. Hopefully it will work since this problem can sometimes be irritating from itciness.

colours of hope

"maximize life workshop for CML patients and caregivers"

We are holding another workshop this coming 26th July ( Saturday) in Ampang Hospital and this time around we had choosen art session as a medium to motivate patients and their families. This is also in terms with art contest and we are hoping patients and their family can sit togather and produce some art pieces.

This event also as part of our series of workshop that we hope to have it regularly every year.

great meeting in baveno, italy

Me and Fan, both of us representing our MaxFamily group with our posters

During one of panel discussion

Baveno town viewed from the boat ride

I am safe and and back to Malaysia yesterday. Apart from a bit of jetlag, the rest are okay and I am still excited about the meeting.

Baveno is a small town by the side of elegant Lake Maggiore. The town is a bit quiet but yet I would say a excitingly beautiful place.

I met a lot of great people during the meeting representing support group, physician, drug companies and most of them comes from European and Latin America countries . The whole meeting was about getting to know latest updates on CML and GIST and its treatment and also about advocacy and networking among various support group. I have learned a lot from the meeting and hope it will be another motivation for us to push the group to the next level.

I also took a chance to talk to one of the speaker who apparently a transplanter from Hammersmith, UK and discuss about my progress.

I am seeing a dermatologist next Friday for my bad acne problem and next week I am seeing the hematologist again to review the PCR molecular result.

With the Novartis officials