In my last post (the one after the all time final) I gave an update on my new skin condition, Sclerodermatous GVHD. Time for another update. (The Johnny Farnham Blog lives on!)
Things have moved on and my skin condition has worsened. The response from my medical team was to increase the drugs by taking Prednisolone to 80mg daily (which is quite high and it is a nasty drug with lots of side effects, muscle wasting being the main one, and potential loss of bone density). Not long after they added a second immuno-suppressant – Mycophenolate. And then when this didn’t appear to be doing the job they added a third line of defence another immuno- suppressant, Tacrolimus.
So as you can imagine, being on 3 immuno-suppressants, its a bit of a tough ride – these drugs are quite toxic! Not to mention the 12 other drugs I am also taking. So all in all I’m now gobbling up around 32 tablets a day. This takes me back to the post transplant days two years ago. I am having weekly blood tests but the skin condition is largely assessed on a clinical basis rather than through the blood results. Most of my critical blood counts are in the normal range to close to.
As my good friend James Watson (an ALL survivor from Peter Mac who incidentally is off all drugs and doing marvelously) says, “it’s the set backs when things seem to be going so well that are tough to take”.
And from Cathy Koning (a new friend through the Leukaemia network, who is finalising a book on her experience)
“For me recovery is not actually a single line from illness to some medical intervention to feeling better and thanks, see you later. The cancer train stops at many stations. It is a series of many setbacks. And recoveries – from the leukaemia/chemo, from sepsis, from being in ICU, from the actual transplant, from GVHD, from shingles, managing diabetes (more than once), from pneumonia and from the serious side effects of drugs such as Prednisolone.”
Just a few months ago I was crowing in my ‘final’ blog how well the two year tests went believing I was fully cured and life would get back to almost normal. How wrong I was!
Amit Khot had always said that GVHD affects 80% of Leukaemia patients and it is unpredictable. After all “we are dealing with biology”.
So for me it is back to my old mantra “One day at a time”.
The good news is that Peter Mac have set up a new Clinical team to tackle the GVHD issue for patients and there is now a strong focus on this issue. The team have recommended a fourth line of treatment Extra Corporeal Photopheresis (ECP) . Basically a process like dialysis that takes blood, spins off plasma and red blood cells and returns these unharmed then treats the remainder with a drug to sensitise the T-cells to UV light. The T-Cells are then killed by exposure to UV radiation, and returned to your body to train your bone marrow not to produce too many T-Cells which are causing all the damage to my skin. This process has been around for a number of years and has minimal reported side effects. I have added a leaflet explaining the process if you’d like to know more!
Peter Mac has three ECP machines and a nurse dedicated for each one. The process takes around 3 hours and I’ll have two treatments a week for the first two months, then its effectiveness will be reviewed and and based on my response the number of treatments should back off after that.
They treat around 20 patients a year, including people from all over Australia and NZ and say that some people don’t respond so well and choose not to continue the treatment largely due to the time commitment. But in my case Health is number 1 and I have plenty of time to dedicate to this nasty disease. I’d like to get on top of it ASAP and the process should start next week sometime – I will keep you posted!
At the consult two of the Nurse Consultants (both of whom had spent time with me during my treatment so remembered by ‘thirst’ for knowledge and numbers – read ‘the guy that asks lots of questions’) – reassured me that the ECP treatment is very effective, with an 80% success rate and usually some softening of the skin. Things certainly won’t return to normal (whatever that was), but at least I will be able to continue on with life.
They reassured me that my condition has been caught early enough to treat and they often see people with much worse Sclerodermatous skin.
Whilst annoying and sometimes painful if the condition was stablised and did not progress I could certainly live with it going forward.
Being severely immuno-suppressed the main concern for me is infections, either viral or bacterial. God help me if I catch COVID -19 – it will be quick! Luckily Jan is a stickler for hygiene and keeps reminding me of the things I need to do to stay safe.
On the Farm
We have been enjoying Tassie’s strict lockdown procedures as this has given us lots of time to complete the myriad of small jobs that seem to hang around. The Garden and farm now look ship shape. We are installing two new centre Pivot irrigators and this requires a big clean of of rocks to allow pasture to be sowed without damaging the machine.
Passing of my Dad
A few weeks ago my father, (aged 86) passed away after a short illness. In fact he spent less than one day in hospital which was his preferred way to depart the world. Although a sad moment it was a great chance for a family get together and to share memories of someone we all loved so much.