I was contacted recently by a lady who had undergone successful treatment for AML and is writing a book on her experience. Cathy Koning lives in Victoria and has experienced many of the things that I have and is now 7 years post transplant. Cathy still suffers from GVHD and is on and off steroids constantly.
Cathy asked me if I’d be happy for her to quote sections from my blog (namely the blog on religion!) and read her draft book. I found it very interesting especially that her experience was similar to mine (although she spent a month in ICU due to kidney problems including dialysis and still has complications).
One of the most startling things I read was the overall survival rate for AML was just 24%. This was quite alarming as I had always thought the statistic to be closer to 60%. As it turns out 60% is the overall survival rate for Leukaemia but AML tends to be much more aggressive than other blood cancers.
Having checked this statistic with my Haematologist, Amit Khot, I have been reassured that this statistic has improved significantly in recent years with Stem Cell technology and other advancements – although I don’t have a more accurate statistic. What is evident is the first 6-12 months post transplant are critical and survival in this period can be ‘touch and go’. Luckily I am well through this and we do know that every month you survive post transplant your chances of survival increase significantly.
And once you reach 2 years post transplant you are given a full clearance with your chances of survival as good as any one else. This is just 3 months away and I am very confident I am going to see this milestone!
My most recent blood tests were pretty encouraging although both my haemoglobin and platelets had dropped somewhat. Amit was not too concerned indicating that these results will bounce around somewhat and both are still in the acceptable range.
Hb – 129 (down from 152)
Wcc – 8.0
Neutrophils – 4.6
Platelets – 137 (down from 184)
In my review with Amit (over the phone) we covered my current drugs (just 8 tablets a day now) and the weaning plan for the steroids. As expected this will be very slow taking another few months. However I am down to just 5mg a day which is considered to be very low.
The lichen planus of my hands has almost disappeared and the only impact of GVHD that I am currently experiencing is mouth soreness from time to time and muscle pain in my legs which seems to come and go depending on the day.
So in a nutshell things are going very well – probably as good as can be expected. And as I say to people I am now doing most if not all of the things I used to do prior to be diagnosed. The marvels of modern medicine!
Other things in the life of the Hamiltons
I caught up with Lachy in Cairns recently (en route during the HeliSafari of FNQ).
We travelled up to Darwin for business meetings with our Business partners Mike and Kate McConachy.
Julia Ham made a visit one weekend.
We have been busy on the farm in Tassie tending to small jobs. The weather has been superb with lovely calm spring days with cool nights.
Claire and Dougall (and multiple friends) made a visit to Tassie one weekend but we were so involved that we overlooked taking a photo!