Welcome to 2021

As you might have gathered not much has happened on the health front for a few months (which is good news) but I thought I would update you now that I have some more news.

In mid February I had another consult with a specialist Dermatologist at Royal Melbourne who has established a clinic specifically for GVHD issues. Dr Ryan D’Cruz was able to check me out in person (the first two consults last year were via TeleHealth) and confirmed that good progress had been made with my ECP treatment, which is on-going.

I raised some concerns with Ryan that some areas of the Sclerodermatous GVHD had regressed slightly. Unfortunately with this presentation of GVHD there is no blood test or result that will definitively show what is happening. Results must be based on clinical observation. The changes in skin condition are very slow and might take months to be recognised.

For me this is quite a concern as any further regression of my situation would be far from ideal.

With this in mind I decided not to take any chances and discussed the options available to increase my treatment. Ryan suggested increasing the frequency of ECP back up to fortnightly but left it to my Hematologist, Amit Khot to make the new plan. He also suggested that Amit look at prescribing a relatively new drug, Ruxolitinib which although not on the PBS for Sclerodermatous skin was known to be highly effective as an immunosuppressant.

My consult with Amit resulted in an increase in Prednisolone to 9mg daily and a doubling of Tacrolimus. He also prescribed Ruxolitinib (which requires special approval) to gain funding.

I am back on monthly consults with Amit and will remain on monthly ECP sessions for the next 3-4 months. Hopefully this will lead to another slight improvement in my condition.

As I explain to people my skin condition is not restricting much of my activity. I can do most exercise activities (bike, walk, stretches, flying, gardening, farm work etc) although at times the pain level will vary.

So overall I consider myself to be pretty lucky but as with all GVHD issues (80% of bone marrow transplants suffer from GVHD) we don’t know what is around the corner. According to Amit the presentation of GVHD will ‘wax and wane’ over time with gradual improvement expected.

As there is not much more to report I will continue to keep this blog open and will update everyone as and when there is some new information to report.

We recently rode some mountain bike trails at St Helens in Tassie. Lots of fun!
After 3 years I was able to take my Haematologist, Amit Khot for a fly when he recently visited Tassie to complete the Overland Track walk. Amit had never been in a helicopter before. I couldn’t resist impressing on him that “I had put my life in his hands and now it was time for the reverse!”
We celebrated my 59th birthday at Stillwater in Launceston recently, with good friends Knox and Cate Heggaton, Kate and Roderick O’Connor and Kate and Stewart Sutherland. (A group of 3 Kates is described as a ‘blessing’ apparently!). Notice the boys got the memo about the checked shirts!

7 thoughts on “Welcome to 2021

  1. Ciao! Lots of love from Tonietti family in Macugnaga Italy.
    I’m following you and I’m very grateful for you update news. birgitta πŸ’œπŸ’œπŸ’œ

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  2. Belated birthday wishes Geoff! Always good to receive positive health updates & love the photos – life in the great outdoors in Tassie looks fantastic. Im heading to Barnbougle next week for golf & having dinner at Stillwater – glad to see it gets the tick of approval from the locals! This is a quick FIFO trip but will be back later in the year & hope to catch up. Love & best wishes to you & Jan from James & I here at Noosa, xxChrissy

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  3. Happy belated Birthday Geoff! Great update, thank you. I particularly loved your comment to Amit before you took to the skies. Hope to catch up with you both in Melbourne soon.
    Sue and Nick xx

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  4. Hello Geoff, Have been reading your story for past 2 hours…happened upon it via the Google rabbit hole, through information of a Ewes Health workshop. What an insightful, honest and enlightening read …of family, friends, a healing body, a strong mind. I wish you a sound and complete recovery, the best of health and enjoy that lovely country, (some of which I know through wool work in a ‘past life’, as the saying goes). Enjoy that coming Tassie winter, of sparkling frosty morns and bracing air. Cheers to you and your partner in all things.

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