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

repeat blood test

I went for follow up the week after I came back from Korea. My blood sample also taken for repeat PCR test (to be sent to Singapore) and I hope the result that will come in next couple of week will show some reduction in the residual disease. Otherwise, there would be some change of plan, I guessed.

The doctor was happy when I told him that my appetite is getting better and my mouth is not as 'tight' as before after I was restarted on steroid. Hmm...talking about steroid, means that I will be bloated again, bug by the gastric uneasiness and labile mood. Anyaway, it is good that it can control the GVHD effect from overwhelming and do more harm to my body. I will be on monthly Immunoglobulin infusion for the next few months to boost my body immune.

My face is still full of acne like lesions from the GVHD effect but its okay. Oh yes, my weight haven't gone up yet. May be I should eat more and get back my 5 kilos, as been advised by the hematologist.

Jeju Island

I dropped by Seoul while waiting for my next flight to Jeju in the afternoon.

The quite town of Jeju City in summer.

I came back back from Korea yerterday. It was a great trip and Jeju is a nice and quiet place to stay. It was summer and the weather is still cold and windy. The meeting was good and I learned a few more new things there. My paper presentation was also great when they were impressed with my study. Anyway, I managed to find time to take a short trip to one of the tourist attraction the day after my presentation. We (me and my friends) took a bus from hotel and stop at this place Seongsan Ichulbong where the mountain rise peak located. It is located at the east of the Jeju Island and it took us one and a half hour to reach there by bus.

This mountain crater was once a small volcanic eruption under the shallow water and later became a small island which people come to see the spectacular view sunrise (of course I didn't manage to see since we reached there almost noon). We have to climbed 1.8 km up and that was so exhausting even after we have to stop a few times. It took us about 30-45 minutes but the view was so much rewarding.

We were welcome by this Uncle 'Dolharubang'

The crater at the mountain peak

The view of the town from the peak

'Hallabong', the special orange only planted in Jeju Island

We went back to the hotel by taxi since we were too tired to be in the bus again and I managed to catch the workshop of the meeting that afternoon.

last 2 weeks

Sorry for not writing in the blog for quite some time. Since I came back from Kelantan for that event, I was not that well. I used to have headache and dizziness. And after that I went to Shah Alam for my PTK course ( on job training course) for 8 days. The schedule was tight when we have to do a lot of assignments and most of them have be completed before we go back. Towards the end of the course, I was hit by a fever, cough and flu and to some extent I had to skip a couple of classes and the group discussion session. Anyway, its over.I have another long assignment need to be done and I have another 10 days before I need to pass it up.

Next week I am going to Korea when my scientific paper was accepted to be presented. I never expected it to be accepted anyway since I was invited to attend CML leader summit in Milan end of next month. I think that I should not miss this summit since it is a good place to meet those people from all around the world.

Oh yes, I met my doctor yesterday and after telling him all the increasing symptoms that I am having lately, he was a little concern that my GVHD efffect is showing more than limited that he want to see, and it has cause some quality of life issue. He advised that I should restart on steroid again. For your information, I continued to loose some more weight and I am as wasted when I was first strike by CML last 2 years ago. This is partly that my appetite is not doing good and I have a limited choice of food due to my mouth problem. I hope that this could be temporary as I am always wanted to be back to what I am..

another leap and reach out in kelantan

10th May was another leap for us. This year, our mission is to reach out more CML community outside of Klang Valley. HUSM which caters most CML patients from Kelantan and Terengganu was selected to be the event venue. Thank you to HUSM Hematologists for being so supportive in making this event another sucess for us and a good start for the local CML community.

The turnout was great and unexpectant despite half of them comes from some distance kilometres away. Thanks to the patients and their families. We learned a lot from the workshop, obviuosly we learned from them. We learned that the approach may be a bit different and tough but we believed we have done something worthwhile and this was showed by patients eagerness and how they are so looking forward for the next meet up!

I flew back on the same day in the evening and felt so tired but so much glad that it was another great great happening.

Next week our mission will continue in Penang and hope it will be another great leap...