Month: November 2017

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.

 

When you are neutropenic (low or no immunity) the medical team want to keep a close eye on you.  This is for two reasons.  Firstly they need to ensure you are not mixing with lots of other people (being confined to a hospital room with HEPA filtered air is one way of achieving this) and secondly if you do get an infection they are able to administer anti-biotics immediately.

So when I was re-admitted to hospital on Monday afternoon my neutrophil level (which is a primary indicator of immunity) was well down – around 0.1.  The aim after Chemotheraphy is to get this count down to 0.0 and then wait for your neutrophils to recover.

I kept on asking my medical team how long I would be required to sit in my hospital room, all the time feeling quite OK, waiting for this to happen.

Jess and Suzie were not keen to be drawn on this one, but thought at least 5 days, maybe 7.  Ashish the senior consultant was a little more conservative saying maybe 10.

So upon waking on Thursday morning you can imagine how surprised I was when my Nurse, Fiona, wrote up the new blood counts from the midnight collection, showing the neutrophils had started to climb again and were at 0.3.  She cautioned me not to get too excited as in her experience this count could bounce up and down a bit each day.  I was thinking just a few more days in hospital to get beyond the 0.5 mark when the Heam Team would be happy for me to go home.

My doctors, Jess and Suzie made an early visit with some great news, they felt that as my neutrophils were rising again and i was generally in good health perhaps I could go home earlier than expected but they would have to check with their senior consultant.

They reappeared soon after with the good news that I could be released (discharged I think is the correct term) today subject to Hospital in the Home (HITH) being able to take me on.  In the meantime they were happy for day release, wanting me back in the afternoon for another round of Platelets and Ambisome.  I was thrilled with this early release after just 3 days and wondered why.  In Jess’s words “you are an over-achiever” which bought a smile to my face!

This worked in very well as it was Lachy’s birthday and Jan had planned a small family celebration at lunchtime. We enjoyed a lovely chicken salad lunch with a special Mango cheesecake for Lachy! Happy Birthday Lachy!!

After a nice nap we headed back to Hospital for the top up on platelets and the IV Ambisome.  Luckily HITH had found space for me in their program and fitted me up with the portable pump for the Ambisome.  I have to carry this 24/7 as it cannot be disconnected – primarily due to the risk of infection.  Each time the IV drip is connected to my Hickman lumen the nurse cleans the connection point (tap) for 15secs with an alcohol wipe.  Prior to that they ‘flush’ the lumen line with a saline solution – something that I could not do at home by myself.

So the upside is I can now enjoy being home (perhaps for 2 weeks or more) but will have to carry around my ‘bum bag’ 24/7.

What a difference a few days makes.

Goodbye to Jess and Suzie who are now moving to another posting in the Victorian Hospital system – you have been wonderful doctors and I will miss you both!

Jan organised a small celebration for Lachy’s 25th birthday.

PS. The new beanie is coming along well.  More details on the auction later.