April 2019 – All going well

Today was another ‘TeleHealth’ consult with my Haematologist Amit Khot.  There was not much to report on as things have been going very well in the past 3 or 4 weeks but Amit did have a pleasant surprise for me.  That was a reduction in my daily drug intake from around 24 tablets a day to just 6 a day – absolute bliss!

Amit was of the view that my liver and kidney function was almost back to normal.  And as my steroid dose has been reducing over the past few weeks I am now able to drop from 12 Valaciclovir (anti-virals) down to just 1 a day.  Similarly the Ursofalk (for liver issues) was able to be dropped altogether, and the Preds are now down to 5mg a day with a slow weaning over the next few weeks.

The blood counts are again very stable with Haemoglobin at 136, White Blood Cells 8.4, Neutrophils 5.7 and platelets 169.  Creatinine was 95 which is well under the 110 mark indicating my kidney function is back to normal.

All in all this was good news and in line with how I feel at the moment.

I asked Amit why I had needed a Stem Cell (Bone Marrow) transplant given that the first round of chemotheraphy was very effective leaving me in total remission.  His answer was ‘its a bit late now to ask that question’ – one of the few moments when I have seen a little bit of humour from him!  However he did explain that research had shown the combination of the type of Leukaemia I had (AMML) with the FLT3 Mutation was best treated with Midostaurin (the horrible big smelly pill from America!) and a Stem Cell Transplant.

I must say I am very grateful that Amit is up to date with the latest research and of course I value his judgement.

Amit also helped out with a comprehensive letter for CASA covering my treatment and prognosis and local DAME Stewart Graham helped me with my application to CASA for the return of my medical certificate.  Hopefully I will have that in a few months.

Leukaemia Foundation

Last week I attended a bi-monthly support group meeting held in Launceston.  To my surprise about 20 people were in attendance including one person who had been coming for over 17 years!  The CEO of the Foundation, Bill Petch spoke about the Foundation and recent research into Leukaemia.  I have always found these meetings helpful as you can always learn from others and it is good to share experiences.  It also makes you realise that there are plenty of people who struggle with their recovery for many years.  My recovery by comparison is going extremely well.

Other happenings

We have had some wonderful visits from family and friends as seen below:

A group of 20 Wagga ‘bikers’ and their wives and partners.  We joined them for a ride to Lake Pedder and Lake St Clair.  Good friends Pete and Sharon Clucas were the organisers and far too quick for me to keep up with on the road!

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Jan’s brother Andrew, partner Heather and their children- twins Maggie and Ned and Jack came for a few days and walked the 3 Capes Walk with us.  This is a 48km hike over 3.5 days carrying packs (18kgs for me).  I was extremely pleased to have completed this one demonstrating that my health is slowly returning to normal.

The GrimShaws and Youngmans from Victoria joined us for a lovely weekend at PumpHouse Point, Lake St Clair.  We enjoyed a few walks, some lovely meals and a few drinks as well.  On our last day we were surprised with a covering of snow on the nearby mountains.

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We arrived back at Milford just in time for afternoon tea with Jo and Nick Middendorp who were travelling between Hobart and Launceston for work.

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Victoria, Georgia, Chloe and Milly Watson called in for afternoon tea yesterday

Fi and Michael Rouch made a quick visit for a couple of nights and left this morning.

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I have managed a few bike rides with Ross Williams, Jay Loane, Ian Herbert and Perry Wilkinson.  I must say I really enjoy these days out on the bike. We generally ride 300-400kms in a full day including a nice stop off for lunch somewhere.  Last week it was Pipers Brook winery.  I am getting to know the back roads of Tassie pretty well thanks to Jay Loane.

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We have also managed to squeeze in a few farm related field days including an Agro Forestry day and a Precision Farming Field day.

Until next month…….