Category Archives: SLMC
Yesterday I went to see Dr. Ruth D at SLMC because she is a pulmonary specialist and I have a head and chest cold and cough. I haven’t seen her since I was in the ICU in SLMC last March. She was the doctor who kept me alive long enough for me to be airlifted to Hong Kong. She helped save my life. She’s a wonderful, cheery, chatty person who is a delight to be with.
The first words out of her mouth after the usual pleasantries were “what prednisolone dose are you on?” That threw me; I’m used to haematologists asking such things but from a pulmonary doctor it was something new. She took careful notes of my current drug regime, and from the questions it was obvious that she knew a lot about GvHD. She asked me where my GvHD presents and I told her the gut, mouth and infrequently the skin. She said she had a patient who had a transplant 8 years ago and the GvHD is only on her tongue. We had a discussion about bronchiolitis obliterans, the most dreaded GvHD, and also scleroderma. She listened to my chest, prescribed a whole lot of medication including a new antibiotic, nagged me to exercise more and sent me on my way.
I was a tad premature with my last post. The two days following have been very bad on the Upper GI GvHD front. Vomiting before taking pre-food drugs is a new one, and my weight has dropped to below 80Kg. It has not been this low for very many years.
So this morning I had an Endoscopy at St. Luke’s Medical Centre and it confirmed stage 1/2 GvHD. I sent the results and the pretty pictures of my small intestine off to the transplant doctors. Now they want me to have a blood test and a renal function test. What that has to do with my intestines I’m not sure.
Today I have taken the last of the Sorafenib, will get my teeth fixed and cleaned, and have a CBC to check all is as OK as can be expected without any chemotherapy for a few weeks.
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.