Category Archives: AML
Today I turned 62. Without modern medicine and great doctors I would not have made it to 59.
We spent the morning in the hospital room of Alexa, a very brave 5 year old with AML, who was starting her third chemo session. Because of her cytogenetics she should have a BMT, but her 2 year old sister is not a match and no other donor has yet been found. We gave her parents some medical contacts in HK and Singapore and explained what we know about the costs of BMT there. In HK and most other places, to get typed as a donor is free. In the Philippines it costs PHP35K+ and that’s from a Government institution, so understandably there isn’t a serious donor registry.
Her doctors had apparently done a donor search in Taiwan, but from what we were told about cross-race matches, as she isn’t Chinese that was pretty much a waste of time. We advised searching in the US and Canada where there are large Filipino communities. We also advised them to make sure that she is transplanted in a centre which does a lot of transplants of that type. As far as I remember there is a specialist children’s unit in Queen Mary in HK.
It was probably too much information overload but we’ve told them they can contact us any time if they think we can help.
Wikipedia: Sorafenib (co-developed and co-marketed by Bayer and Onyx Pharmaceuticals as Nexavar), is a drug approved for the treatment of primary kidney cancer (advanced renal cell carcinoma) and advanced primary liver cancer (hepatocellular carcinoma).
I was prescribed Sorafenib in June 2011 and I am still taking the full dose. It is rare, according to my doctor, for someone to tolerate the drug this long. I don’t have either of the cancers mentioned above, but studies have shown that it can reverse the mutation of the FLT-3 gene which is known to be implicated in Acute Myeloid Leukaemia (AML). Again, from Wikipedia: Adverse effects of sorafenib include skin rash, hand-foot skin reactions, diarrhea, and hypertension. A case of diffuse yellow discoloration of the skin has been reported. Sorafenib has also been implicated in the development of reversible posterior leukoencephalopathy syndrome and reversible erythrocytosis.
I get a few, transient, skin rashes; my blood pressure is slightly elevated and I get intermittent diarrhoea. I have never had the hand-foot skin reaction. And my FLT-3 gene is back to normal!
I will stop taking the drug a week before the start of the transplant so that it does not interfere with the drugs they will use then.
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.