Given my ‘last ever Blog’ was just prior to Christmas I thought I’d call this one the Johnny Farnham blog!
We recently travelled to Melbourne for a two-day series of tests and appointments to mark One Year post Stem Cell Transplant. It is usual for Leukaemia patients to undergo a series of tests at the one and two year mark.
These tests involved an extended range of blood tests, a dental check up, a Bone Marrow Biopsy, a Bone Density test, a lung function test and a Gated Blood Pool scan (to test heart function). The doctors are keen to keep a close eye on vital organs as these are most likely to suffer with the drug regime that follows a stem cell transplant.
I am pleased to report that all tests were positive with encouraging results. The big one of course is the bone marrow biopsy where the team look for any signs of Leukaemia. Once again results show I am in remission (no leukaemia).
The other tests make a comparison with previous results (at the 100 day mark) and against a ‘normal’ person of your age, weight and gender. All my tests show no regression since the 100 day tests and in most cases as good or in part slightly above the ‘average’ person.
This is very reassuring for the path forward.
The blood counts were stable again (having been so for a few months now) with Red Blood Cells at 115, White Blood Cells 7.9, Platelets 139 and Neutrophils 3.3.
The liver enzymes have improved somewhat and are almost in the normal range.
The Chimerism test once again showed 100% for both positive and negative. I understood chimerism to be an indication of how well the transplant has ‘taken’ but asked Ming, my clinical nurse, to explain the detail of positive and negative. This is what he had to say!
“Ummm, the easiest way to understand this is when I write 100+/100-, we measure the genetics of the donor and recipient. In the post transplant setting, we look for a marker called CD3, positive on the T-cell, and negative on the non T-cell. The CD3+ (T-cell) reflects the immune system – lymphocytes, i.e. B cells which produce anti-bodies against antigens or foreign particles; and T cells – being the fighter against infections and responsible for Graft versus leukaemia effect (as well as responsible for graft versus host disease). And the CD3- (non T-cell) reflects the bloods system – erythrocytes (red cells), megakaryocytes (mother of platelets) and granulocytes (most abundant white blood cells including neutrophils). Being 100% on both sides (+ and -) means Tony’s stem cells have fully taken over both systems, and that your blood and immune systems are constituted by his stem cells, and hopefully sustained for the rest of your life.”
It is nice to know that the transplant has worked well! Thanks again to my brother Tony – he saved my life and I am VERY grateful!!
This Graph shows my platelets level since transplant a year ago. The platelets provide a blood clotting agent and are one of the best indicators that the transplant has worked. When they drop below 20 you generally get a platelet transfusion to boost the level, 150 is considered to be the base level for a normal person. I had 3 platelet transfusions in 2018
Following a meeting with our consultant Amit Khot I was able to drop the steroids and Somac and reduce the Valaciclovir (anti-viral) down to just one tablet a day (down from 12). This reduces the total number of tablets from around 24 to just 10 a day at present.
I will stay on fortnightly blood tests and monthly consults with Amit – although my next one will be via TeleHealth – basically video conference. Saves a trip to Melbourne.
The only ‘gripe’ I have at present is that my muscles and large bones seem to ache a lot. This is usually worse in the mornings and makes movement quite painful. However by lunch time I usually feel much better and am able to get around a do a few jobs. I now know what it must be like to be in your 80s!
In January we travelled up to Brisbane courtesy of Novatis. I was asked to speak at their staff conference to provide the patient experience in relation to Midostaurin (the big, smelly pill supplied in the early days of chemotheraphy). It targets the FLT3 mutation of my Leukaemia. This drug was new to Australia and not yet on the PBS. Novatis kindly offered it to me Free of Charge, probably saving us around $100,000. I thought taking a few days out (of my not so busy schedule) to talk at the conference was the least I could do!
At the Novatis conference. I am trying my best “Kochie” impersonation!
Family and friends
We enjoyed a fantastic Christmas with family including my parents and Jan’s parents.
And following that a few days with friends from Forbes – Bob and Danielle Scott. We met up at Bruny Island, south of Hobart and took a fantastic boat trip with Pennicott Tours.
John and Sandy Hawkins (our neighbours at Wagga) made a visit for a few days also – escaping the extreme heat in NSW. We now know why we moved to Tassie when we see 40 plus at Wagga and 26 in Tassie
Meanwhile back to work on the farm!