Week 9 – Friday and Saturday – Derby Day

Yesterday and today have been pretty uneventful.  From a medical point of view everything is going well. My blood pressure is good, my heart rate and all other observations are going well.  Mind you my natural heart rate is in the mid 40s which is very low and when a nurse sees something close to 50 they start getting nervous!

I had visits from old school friend Henry Poole for breakfast on Saturday and then a friend of Jan’s Susan Nicholson for lunch Saturday.

The HITH team take about 45-60 minutes to check me out and change the IV drugs and this usually happens early afternoon although on Friday it wasn’t until 6.00pm.

I have managed some good walks of an hour or so each time, but my doctors (Jess in particular!) have banned me from bike riding until my blood counts return to normal.  We managed to head down to the Yarra river to check out the helicopters transferring the glamorous punters to Derby Day at Flemington Race course.

The neutrophils are now at 1.2 (2-7 is the normal range) and rising so things are heading in the right direction. Haemoglobin is 93 (10-175 normal), White Blood Cells are 2.3 (4-11 normal) and platelets 27 (150-400 normal).

So where am I up to with my treatment?

Basically I have finished my second round (consolidation phase) of Chemotheraphy, although I still have a few days of the USA drug, midostaurin to finish off.  Now that I am out of hospital I am waiting for the blood counts to rise into the normal range before I can ‘venture out’ without a mask and extra precautions to avoid infections.

I have a series of tests (CT Scan, Bone Marrow Biopsy) scheduled for the middle of November which will then dictate the timing of my bone marrow transplant.  This has been set for early December but if the CT scan shows my chest infection has not cleared up the doctors may delay the transplant for further treatment.

As the chest infection is a fungal (Aspergillus) infection the IV drugs (Ambisome) take a long time to come have the desired effect.  At this stage I am set to receive this drug for z total of 8 weeks (i’m up to week 6) but this may be extended to 12 weeks.  This involves receiving 600ml of a yellow IV drug once daily, including each and every day that I am at home.

The bone marrow biopsy will hopefully confirm that I am still in remission (cancer free) although this is not guaranteed – the cancer can reappear.

If all goes well and the infection has cleared then I will be admitted to hospital towards the end of November for the last (and quite aggressive) round of Chemotheraphy prior to the Bone Marrow (stem cell) transplant from my brother Tony.

I have not met with my Transplant team (a completely new group of doctors) yet, so do not have the official word on timing and what the process might be.  My information to date has come from talking to transplant patients in Ward 7B (some have horror stories of recovery) and other survivors of Leukaemia who friends have put me in touch with.

I am sure more information will come to light in due course.

But for now my goal is to enjoy my time at home and work on a full recovery for the chest infection.