July 2019 – GVHD strikes back

I guess the last blood tests were a little warning that things were not going so well and of course given more time that is exactly what the situation was.  Over the past few weeks I hadn’t been feeling so well with considerably more muscle pain and more bowel problems including diarrhoea which is an obvious sign of GVHD.  And to top if off the Lichen Planus on my hands had flared up again.  All things pointed to another bout of GVHD and although I was keen to ‘self-medicate’ I resisted the urge until I had discussed the options with Amit.

One of the first things he zeroed in on was the blood count for the Eosinophils, which normally rests at less than 0.1 but last test was up to 0.8 and this week rose to 2.2.  This is a ‘marker’ for GVHD and was enough for Amit to put me back on Prednisolone, starting at 20mg per day.

Amit had said some time ago that my journey this year would involve ups and downs with GVHD and having to continually go back on steroids as a countermeasure.  Despite this I had hoped that my recovery might have progressed a little more smoothly.

The good thing is once I had started taking the steroids again I immediately started to feel better.  The muscle pain eased within a day and I regained the energy that the GVHD had obviously been taking away.

Blood counts are now sitting at 134 for Hb, 13.4 Wcc, 154 for Platelets, 4.2 for Neutrophils.

One of the side effects of being back on Prednisolone is increasing the dose of Valaciclovir back up to 12 day!

Joe Trapani

To show our gratitude for the care and treatment received at Peter Mac (ie The Victorian Comprehensive Cancer Centre) Jan and I made a donation to research (apparently the full cost of treating a leukaemia patient is close to $1.5m – so I guess there was some room to help out!).  Through the Peter Mac Foundation we managed to sponsor some leading research under the Direction of Professor Joe Trapani who is the head of the Cancer Immunology Research program.

Joe and his team are working on a targeted therapy for GVHD, which of course was of interest to us.  We managed to meet with Joe and discuss his research which after 10 years in a laboratory with mice is about to be tested with humans.  He is hopeful of launching a new medication within a few years that will replace the need for the blunt instrument of Prednisolone for treating GVHD of the skin.

We were fortunate enough to tour the research labs at Peter Mac.  There are 650 researchers currently employed there – it’s a leader in its field throughout the world.  I certainly ended up at the right place for my treatment.

Jan with Steffi Chang from the Peter Mac Foundation.

Other things

We have enjoyed spending more time on the farm in Tasmania.

CASA have come good and returned my medical without any restrictions – which means I can go flying again solo once I am retested by an instructor.  This is good news and something I have been waiting on since the day I first got sick.

We are currently in Broome having joined Claire and her boyfriend Toby earlier in the week for a few days of outback camping and expolring at Cape Leveque.  Following that Claire, Jan and I will be joined by Michael and Fiona Sheridan to drive back across the desert from Marble Bar to Alice Springs (sadly Toby has to return to Victoria for work).  We will join up with the Thomson family from Wagga Wagga at Marble Bar.