Month: April 2018

My regular Thursday visit to the hospital last week resulted in more fluids and two units of blood as the haemoglobin was low at 81.  The GCSF injections had been very effective as the neutrophils were up to 13.0 (normal range 2-8) so this was a strong response (the previous test was just 1.5). The doctors were very happy!

They also believe that this may well be my last transfusion for a while as now that the neutrophils are back to ‘normal’ my body should put its effort into generating red blood cells and platelets (which are also low at 26).  We will wait and see what this week’s results show.

We bumped into some regulars at the hospital, James and Victoria Watson.  James is about 20 days ahead of me in treatment so we have shared 7B and the day therapy unit over the past 9 months.  He has responded well although spent 3 weeks in hospital recently with Graft vs Host disease.  We played a round of 500 to pass some time while we were both getting a blood transfusion.

On Anzac Day we went for a lovely walk along the Bay with the Rouches and then spent the afternoon with Knox and Cate Heggaton (Knox leases our farm  in Tassie).  They have just become grandparents and had travelled up to NSW to make their first visit to see their son Tom and his wife Alex and new arrival Zoe.

On the weekend we also caught up with Richard and Alice Tallis and John and Sandy Hawkins.  It is always good to see old friends and catch up on news.

Last Friday we drove down to Barwon Heads to meet up with our banker from Darwin (for our Kununurra business), Paul O’Brien.  Paul’s parents live in Geelong and he was down this way on holidays.  We had a great lunch at the Cafe overlooking the water at Barwon  Heads.

On Saturday afternoon we headed off to see the musical “Priscilla” which was absolutely fantastic – lots of energy and great costumes.

Sunday I cycled up to Lachy’s place and we took Sparky for a walk around the neighbourhood and had lunch in the local cafe.

The space outside my original room at Ward 7B has now been upgraded with a ‘kinetic sculpture Park’ as a result of discussions with management in the very early days. The leaves on the sculptures gently rotate and gyrate in the breeze.

The next thing on my agenda is an appointment on Wednesday with one of the lead consultants to review my 100 day test results and discuss the next stage.  I will report back when I have more information.

Monday was the usual visit to the hospital but we had a pleasant surprise in that the IV fluids were kept to a minimum – just a litre of sodium chloride to help with my kidney function.

The good news was all blood counts were up slightly with the neutrophils up to 1.5 (from 0.7), being quite a relief.  The normal  range for neutrophils is 2.0-7.0 so hopfully I will get there soon. The GCSF injections are designed to increase the neutrophils so it looks like they are doing their job.

The Haemoglobin count was 90 and platelets 26 which is well above the level for transfusion – hence no need for extra products.

The doctors are very happy with my liver function which is normal but still slightly concerned about the kidney function which is still struggling.  The creatin level has dropped from 190 to 168, mostly likely due to the reduction in cyclosporin.

The good news is the latest Chimerism test has come back at 100% meaning  100% of the bone marrow is my donor’s (brother Tony).  This is critical as without a good transplant I can’t really move forward.  So all three Chimerism tests have been 100% which is reassuring.

Next week I see one of the senior consultants for the report on my 100 day tests.  There is some talk about dropping back to just a monthly visit to Peter Mac for checkups – a scary thought given at present I am still visiting twice a week.  When we go to monthly they will also remove my PICC line as well. The doctors are obviously happy with my progress but I will know more next week.

On the weekend we visited Lindsay Fox’s car museum which is located in Docklands.  He has around 70 cars in a beautiful heritage listed two story warehouse manned by volunteers.  It is a great spectacle with one car worth over $7m apparently!

We also had Katrina Weir drop in for a chat on Sunday.  Katrina (Millsy as we call her) was down from  Sydney for work on Monday so made an effort to call by.  We have been friends since our uni days (and in fact I am a very poor godfather for her daughter Harriet).

Thankyou to everyone – family and friends who have wished me well after the 100 day mark (and for our 30th wedding anniversary wishes).   It might seem strange but the comments and feedback we get are very encouraging and helpful in managing the recovery process (now I am feeling like a social media junkie!).

Today was unexpectedly one of good news – I have spent the whole day (10.00am to 4.30pm) going through the routine – blood tests, two units of blood, new dressing for my PICC line and a review by the doctors.

During the review my doctor, Emma announced the ‘preliminary’ results from my Bone Marrow Biopsy (only taken on Tuesday) indicated I am still clear of Leukaemia.  There is still a more detailed result to come but for me this is a great relief.

This is my 4th biopsy and (apart from the first one) all have shown me to be in remission (clear of leukaemia) so far. It is looking good that I might be able to beat this nasty disease!

The other news from today’s visit is a radical change in my drug program.  The medical team have been worried about my  poor kidney function – the creatinine level is now 190 which is considered high – normally this would be less than 100.

The main drug affecting my kidney function is the cyclosporin which is a highly toxic drug and I am only now starting my weaning process from a high rate (150mg/day).

To overcome this they have advised no cyclosporin for a day and then back to 125mg/day dropping by 25mg each week until it is all gone.  I asked why they were not happy to drop it altogether – the answer being is may well trigger another round of Graft vs Host disease – not something we need at this stage as it would involve more setbacks.

The doctors are also concerned about my low neutrophil count (now down to 0.7) and as a result have prescribed a series of G-CSF (Granulocyte- Colony Stimulating Factor) injections to stimulate the stem cell growth. Jan will be administering these to me at home.

These injections are effective in increasing the neutrophil count which helps my immune system recover (at the moment I am considered neutropenic and at high risk of infection).

I will know more next week after the blood tests on Monday so here’s hoping the medical  team’s latest suggestions will have a positive result.

Having reached the big milestone of 100 days the medical team line you up for a range of tests including a lung function test and a bone marrow biopsy.

These were completed today.  They also included a fasting blood test (about 12 different tubes of blood) which was completed first up in the pathology section of RMH today.  I got there early (they open at 8.30am) only to find about 10 people had queued up already for their fasting tests – not to worry that only added an extra half hour to the wait.

This put me about half an hour late for my bone marrow biopsy but being ‘hospital time; no one seemed to mind – it all just rolls along.

When they do a bone marrow biopsy they are looking to take some fluid and a small sample of marrow from the hip bone.  The procedure takes around 30 minutes and requires a small amount of sedation.

The results will not be available for about 2 weeks so we will have to wait and see.

The dental check-up and lung function test went well on Monday and show at this stage everything seems to be OK.

Monday was a special day for Jan and I as we celebrated our 30th wedding anniversary.  Let’s hope there is another 30 to come!

A lovely present from my parents for our 30th wedding anniversary.

Jan’s project has been this beautiful baby’s jumper.

It has been a long time coming but today I have reached 100 days post transplant.  The medical team see this as an important milestone – a date to plan the next phase of treatment.  Almost all Leukemia patients talk about the 100 days post transplant – it is part of the lingo!

I must admit in the early stages of my recovery post transplant I was in doubt if this day would ever come along – time seemed to move so slowly!  But my mantra of ‘one day at a time’ has paid off and here I am!

The medical team have come up with a new plan over the next 6-7 weeks that should see me return to a ‘more normal state’.

By this I mean regaining my appetite, less nausea, regaining more energy and feeling a little more ‘normal’.  At present I am still lacking energy and will often rest for a few hours in the afternoon.  A current day can involve a walk in the morning (sometimes to the hospital for blood tests) of about 45 minutes, then breakfast, then reading or working on a project (current one is a jig-saw puzzle), lunch, a long rest, more reading, a short walk and then dinner and TV.  The Commonwealth Games have been a great way to pass some time.

At times I wonder how Jan manages to cope with the slow days and lack of activity.  We talk about this from time to time and she tells me that her role now is to help me return to health.  It is good to have her by my side as it would be a lonely trip if you had to go through this by yourself. I am a lucky man!

The 100 days is also a trigger for a range of tests that I will have next week – including a dental check, lung function test, fasting blood tests and the all important Bone Marrow Biopsy to check for residual leukemia.  This will be my 4th biopsy since diagnosis.

My new plan will unfold weekly and involves me being weaned off many of the drugs. Eventually I will only be needing two or three different drugs – yipee.  Such a change from 44 tablets a day!

Today I have reduced the steroid intake from  20mg to 10mg and dropped the Valganciclovir – which has to date had a big impact on my blood counts, especially the neutrophils.  Hopefully they will start to return to normal now.

It is a scary thought planning ahead 7 weeks and thinking what life might be like under a more ‘normal’ scenario, however I get ahead of myself!

For the time being it is back to ‘one day at at time’.

Well another week has passed and the good news is everything is still fine – no high temperatures, no emergency trips to the hospital – just the Monday and Thursday visit for IV fluids and regular blood checks.

The Doctors were a little concerned about my haemoglobin levels last Thursday so I received just one unit of blood as a top up.

The Graft Vs Host disease (GVHD) that I have experienced in my liver – is treated with large doses of steroids to damp down the immune response that is causing the GVHD.

The steroids also reduce my ability to keep the Cytomegalovirus (CMV) under control. I therefore require the anti-viral drug, Valganciclovir to hold the CMV back.

Valganciclovir has an impact on my stem cell’s ability to produce white blood cells, red blood cells and platelets. My neutrophil count is now down to just 1.0 with anything less than 0.5 meaning I am neutropenic and at significant risk of infections.

What is very obvious is that the treatment of  leukemia is a huge juggling act.  There are a myriad of drugs the medical team can use but one usually has a side effect on something else  – requiring another drug to help treat the side effect.

And when you are over the ‘danger’ period the doctors ‘wean’ you off these drugs slowly – usually one at a time.  This requires patience as it will take quite a few weeks before the team will be able to remove the majority of drugs associated with the GVHD and CMV issues.

So for the time being I am down to 25 tablets a day still a large cocktail but noticeably less than the maximum of 44.

Catch ups

We have had a great weekend catching up with my sister Fiona and husband Michael who live in Bangkok but were back for a short break in Australia.  Michael just happens to be Jan’s younger brother so it keeps things close at family gatherings!

We managed to fit in quite a few activities including a footy match at Etihad Stadium (Michael is a big Fan of the Western Bulldogs who flogged Essendon who are supported by the rest of Michael’s family!).

On Monday afternoon we hired a small boat for another Yarra trip to show Michael and Fiona the city sites.  It was a great autumn afternoon in Melbourne with almost perfect weather.

Well another week has passed and the good news is everything is still fine – no high temperatures, no emergency trips to the hospital – just the Monday and Thursday visit for IV fluids and regular blood checks.

The Doctors were a little concerned about my haemoglobin levels last Thursday so I received just one unit of blood as a top up.

The Graft Vs Host disease (GVHD) that I have experienced in my liver – is treated with large doses of steroids to damp down the immune response that is causing the GVHD.

The steroids also reduce my ability to keep the Cytomegalovirus (CMV) under control. I therefore require the anti-viral drug, Valganciclovir to hold the CMV back.

Valganciclovir has an impact on my stem cell’s ability to produce white blood cells, red blood cells and platelets. My neutrophil count is now down to just 1.0 with anything less than 0.5 meaning I am neutropenic and at significant risk of infections.

What is very obvious is that the treatment of  leukemia is a huge juggling act.  There are a myriad of drugs the medical team can use but one usually has a side effect on something else  – requiring another drug to help treat the side effect.

And when you are over the ‘danger’ period the doctors ‘wean’ you off these drugs slowly – usually one at a time.  This requires patience as it will take quite a few weeks before the team will be able to remove the majority of drugs associated with the GVHD and CMV issues.

So for the time being I am down to 25 tablets a day still a large cocktail but noticeably less than the maximum of 44.

Catch ups

We have had a great weekend catching up with my sister Fiona and husband Michael who live in Bangkok but were back for a short break in Australia.  Michael just happens to be Jan’s younger brother so it keeps things close at family gatherings!

We managed to fit in quite a few activities including a footy match at Etihad Stadium (Michael is a big Fan of the Western Bulldogs who flogged Essendon who are supported by the rest of Michael’s family!).

On Monday afternoon we hired a small boat for another Yarra trip to show Michael and Fiona the city sites.  It was a great autumn afternoon in Melbourne with almost perfect weather.

I am feeling like I am building up strength and my health is slowly slowly returning to some form of ‘normality’.  It is a slow process but as each day goes by I am grateful of any small improvement in my health. I seem to be able to eat a little more each day with my appetite returning slowly and it is not problem to make the 40 minute walk to the hospital.

Last week’s visit to hospital on Thursday ended up being a bigger day than I thought.  We arrived at around 11.00 but didn’t depart until about 4.30pm mainly due to the fact that I needed two units of blood and a bag of platelets.  My counts were just at the cut off level for both and with the Easter long weekend coming  up the medical team decided it was best to make the top up that day.  It takes about an hour for each unit of blood but they  check your blood type first before ordering products with can take 1.5hrs.  I also had the PICC dressing changed which takes half an hour or so.

So by the time all that happened most of the day had gone – just another day in hospital getting the important treatment that I require to maintain my recovery program.

Visits and excursions

It is off to hospital on Tuesday for another checkup and perhaps extra blood and platelets subject to the results from the blood tests.