It has been about a month since my last blog and there have been a few developments so I thought I would update everyone.
On the great game of Leukaemia Snakes and Ladders I have recently landed on a Snake and have slithered back a few rows. Luckily this is not a big one, but nevertheless a setback that is not welcome.
I am currently having blood tests every two weeks, and towards the end of January my consultant detected a strange increase in the Eosinophil level – which is one indicator that GVHD has returned.
The Eosinophil is a white blood cell that is primarily used to fight diseases or infections (in a similar way to neutrophils) and an increase beyond 0.5 is considered to be outside the normal range. In my blood test at the end of January this was sitting at 2.3 and rose to 2.9 early Feb – ringing alarm bells for Amit Khot (my consultant haematologist).
Amit was quick to put me back on steroids and could not accurately pinpoint where the GVHD was attacking – other than it had obviously flared up.
So after just 3 weeks off a very low dose of Prednisolone I am now back to 20mg a day and the weaning process will take another couple of months.
After just four or five days the Eosinophil level dropped back into the normal range indicating that the steroids had started to work.
Of course the usual side effects from the steroids come into play. I have to increase the anti-viral drug Valaciclovir from one tablet a day to 12 taking me back up to around 24 tablets each day.
The other unusual issue at present is a continual ache of my muscles and bones. I am currently managed this with panadol two or three times a day and although it can be quite severe I can generally manage most normal things during the day. The pain usually subsides by about lunchtime. As one of my mates commented recently “don’t worry I feel pretty sore and slow until about lunchtime on most days so you’re not on your own!”
Apart from these issues most other things are going well. On a day to day basis I can get out and about and do most things on the farm that need doing.
I must say I am enjoying being in the fresh air and having the ability to get out and about. Every day is a bonus!
On my last blood tests the results were:
Red Blood Cells – 125, White Blood Cells 11.3, Platelets 204 (yippee!), Neutrophils 8.1 and Creatinine 96. These are all now in the normal range (or even at the high end).
These counts are up a little from the previous tests – a normal response to being on steroids.
My last consult with Amit was done via ‘Telehealth’ – basically a Skype session. This was a great way to exchange information and of course saved us travelling to Melbourne for a 30 minute consult.
Jan and I recently did a great day’s touring of the North East of Tasmania. We took a few back roads (that I had previously explored on my bike) and ended up at Branxholm for a coffee (and dropped in to a local Flower Show), then Gladstone for a pub lunch before heading up to view the 56 Wind Turbines at Cape Portland. We headed home by the coastal road dropping in to see the famous “Bay of Fires” north of St Helens.
And I have been out and about on my bike this time with Jamie Loane, a neighbour, who knows the back roads around Eastern Tasmania.
The chook shed is almost finished. Next the vegie garden!