Category Archives: MDS
Not to give too much history as this is supposed to be a record of what is to come, hopefully daily.
I was diagnosed with Myelodysplastic Syndrome – MDS – in mid 2009 after having slowly declining blood counts for a year. I was treated at Queen Mary’s Hospital in Pokfulam in Hong Kong with a full chemotherapy regime from July 2009 through January 2010. This was:
– an induction dose of Cytabarine (7 days) concurrent with Daunrubicin (3 days)
– 2 doses of Cytabarine (5 days) plus Daunrubicin (2 days)
– 4 doses of High Dose ARA-C.
I was in remission from the first dose and I recovered quickly from each dose. In December 2010 I had a routine blood check and noticed that my counts were declining. A bone marrow biopsy in January 2011 confirmed that I had relapsed. I had a new Hickman line inserted at the end of January and had a week of Azacitidine as an outpatient at the HK Sanatorium. Why the hospital change? My doctor had moved. Azacitidine was used just to control the disease while a transplant could be scheduled.
I had a second dose of Azacitidine at St. Luke’s Medical Centre in Bonifacio Global City, Taguig, Philippines in early March and all seemed to be well. A couple of days later on March 9 I was admitted with a high fever and was soon in the ICU in a coma. I had a very bad lung infection which was threatening to kill me and I was placed in a coma and put on a ventilator. On March 20 I was taken to Hong Kong by air ambulance and went into the ICU in the HK Sanatorium. I was woken up on March 26 and moved out of the ICU on March 29.
When I woke up I was so weak that I could not walk. It took weeks of physiotherapy to get me mobile again. After my lung condition was stabilised the doctors could get back to treating the MDS. A bone marrow biopsy showed I had 15% blasts and I was started on a mild dose of ARA-C. This is where medicine becomes art rather than science. Too strong a dose means a higher risk of complications, too low and it won’t be effective. Meanwhile a search for a new donor was initiated as my donor had become ill and was no longer able to donate. At the same time the BMT unit in Queen Mary’s was experiencing difficulties and declined to take me as they had a long waiting list of people with better survival prospects.
My doctor contacted Singapore General and they agreed to take me and initiated a donor search. This was in June 2011. Eventually 3 excellent donors were located, 1 in Poland and 2 in the USA. The Polish donor was not available, but blood samples from both US donors were sent to Singapore and matched against me.
On November 9, exactly 8 months after I was admitted to hospital, I was discharged and flew home.
Finally, after 5 months we have a probable date for the transplant; December 8 is the start with Day 0 on December 15.
In my next post I will comment on Sorafenib (Nexavar), followed by an account of our first visit to Singapore General Hospital last week.