Sunday, July 27, 2008

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

Friday, July 11, 2008

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.

Wednesday, July 9, 2008

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.

Friday, July 4, 2008

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.

Thursday, July 3, 2008

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.

Wednesday, July 2, 2008

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