My brief story: A CML Victim.
My name is Pasusant Wattanaboonya , 58 years old, married without kids. I was diagnosed with chronic myeloid leukemia (CML) at 35 years old.
My mental health got worse due to the stress of the symptoms and the family financial condition I was experiencing. These caused me fever, headache, fatigue and exhausted on and off for years.
After taking more than a year of Hydroxyurea treatment the doctor changed the treatment to a more efficient method of subcutaneous injection. I had given myself the injections for 4 years. Until early 2003, my doctor had told me about a new and effective medicine and about the GIPAP.
GIPAP was established to help CML victims without any charges. However, the qualified victims will have to go through the committee’s consideration to ensure their qualifications had met with the GIPAP’s requirements.
The doctor had kindly arranged and processed all necessary documents to GIPAP. I was very lucky to be successfully accepted by them. I started taking this new capsule since March 2003 till the present. The results of my routine blood check showed that Bcr-Abl was negative which meant a good sign to recover. I hope that I can recover if I see the doctor routinely and strictly take the medicines as prescribed.
Recently, I have stopped taking medication since September 2018 due to the effectiveness of Target Therapy and the good responses of molecular testing. I have to enter clinical trial program with the RQ-PCR molecular monitoring every month for 1st year and every 2-3 months for the following years. This costs about US$ 100 – 150 per test and definitely I will be in the financial difficulty if I am not under the social security system
I am one of the longest survivors as a CML patient in the world almost 23 years and I have been invited to be a committee of Thai CML Patient Group which is an active CML patient advocacy organization in Thailand for almost 10 years. Besides, I have just established MPN Patient Advocacy Group Thailand since last year as requested by MPN Advocates Network. It is a voluntary work for me to share, motivate and support both patients and care-givers for both patient groups.
Last but least in fact most important, I have initiated and carried out my personal project called “Fund for Destitute Cancer Patients” in order to raise fund to help cancer patients who needed financial support to cover the cost of treatment and other related expenses. I used several social media and events to tell the story and seek the sponsorship for raising funds up to 7th year now.
