October 2019 – Steady as she goes

I was contacted recently by a lady who had undergone successful treatment for AML and is writing a book on her experience.  Cathy Koning lives in Victoria and has experienced many of the things that I have and is now 7 years post transplant. Cathy still suffers from GVHD and is on and off steroids constantly.

Cathy asked me if I’d be happy for her to quote sections from my blog (namely the blog on religion!) and read her draft book.  I found it very interesting especially that her experience was similar to mine (although she spent a month in ICU due to kidney problems including dialysis and still has complications).

One of the most startling things I read was the overall survival rate for AML was just 24%.  This was quite alarming as I had always thought the statistic to be closer to 60%.  As it turns out 60% is the overall survival rate for Leukaemia but AML tends to be much more aggressive than other blood cancers.

Having checked this statistic with my Haematologist, Amit Khot, I have been reassured that this statistic has improved significantly in recent years with Stem Cell technology and other advancements – although I don’t have a more accurate statistic.  What is evident is the first 6-12 months post transplant are critical and survival in this period can be ‘touch and go’.  Luckily I am well through this and we do know that every month you survive post transplant your chances of survival increase significantly.

And once you reach 2 years post transplant you are given a full clearance with your chances of survival as good as any one else.  This is just 3 months away and I am very confident I am going to see this milestone!

My most recent blood tests were pretty encouraging although both my haemoglobin and platelets had dropped somewhat.  Amit was not too concerned indicating that these results will bounce around somewhat and both are still in the acceptable range.

Results were:

Hb – 129 (down from 152)

Wcc – 8.0

Neutrophils – 4.6

Platelets – 137 (down from 184)

In my review with Amit (over the phone) we covered my current drugs (just 8 tablets a day now) and the weaning plan for the steroids.  As expected this will be very slow taking another few months.  However I am down to just 5mg a day which is considered to be very low.

The lichen planus of my hands has almost disappeared and the only impact of GVHD that I am currently experiencing is mouth soreness from time to time and muscle pain in my legs which seems to come and go depending on the day.

So in a nutshell things are going very well – probably as good as can be expected.  And as I say to people I am now doing most if not all of the things I used to do prior to be diagnosed.  The marvels of modern medicine!

Other things in the life of the Hamiltons

I caught up with Lachy in Cairns recently (en route during the HeliSafari of FNQ).

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We travelled up to Darwin for business meetings with our Business partners Mike and Kate McConachy.

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Julia Ham made a visit one weekend.

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We have been busy on the farm in Tassie tending to small jobs.  The weather has been superb with lovely calm spring days with cool nights.

Claire and Dougall (and multiple friends) made a visit to Tassie one weekend but we were so involved that we overlooked taking a photo!

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We spent a day making a new compost bin (a birthday present for Jan!)

 

 

 

 

Sept 2019 – My health is good

I am now on monthly blood tests which is fantastic. My veins have taken a pounding over the past 12 months and it is good to give them some relief.

I had a consult with Amit this week over the phone and all went well. We went through the standard questions.

How do you feel? What drugs are you taking?

Amit was interested in my recent travel and movements and said I must be feeling well if I can be doing the things I listed.

And that is the key point. I have recently felt as well as ever. I’d say 80-90% of my pre diagnosis health – which is probably a great outcome. I have nothing really to complain about.

My recent blood results were all pretty good with Haemoglobin 152, Wcc 129, Neutrophils 9.5, Platelets 177 and Creatinine 78. In fact some of counts were a little high but probably due to the steroid dose I am not on (currently 10mg).

The weaning process for the Prednisolone is very slow – it will take 5 months to get back off this drug!

The Lichen Planus on my hands had recently flared up but thanks to a super strength cream it is now under control.

So now I am looking forward to the 2 year post Bone Marrow Transplant date (January 2020) as this is when the doctors will give me a full clearance.

Other things

Jan and I enjoyed a few days at Falls Creek skiing with David Foster Peter Clucas and Colin Duff. It had been 3 years since I’d been skiing so I was unsure how that would go. Apart from some massive cramps at night time (in my shins of all places) the skiing went really well – no falls and I even managed to ski the Summit.

Claire Toby and Pria helped out with tree planting at Milford. Lachy made a surprise visit from Bali.

I joined my friend Eric Saacks on a Heli Safari around FNQ. This was a trip of a lifetime.

August 2019 – Steroids are my life!

Prednisolone is an amazing drug – just a few mgs a day and the T Cells back off allowing my body to recover from the GVHD.

Amit Khot tells me that all the effects of GVHD are not well known or documented and there are many manifestations which patients describe that are not named or well studied.  The standard response is to ‘hit it’ with Steroids (Prednisolone) and hope for the best.  A blunt instrument but one that seems to work.

Since going back on the steroids I have felt much better and I am now starting the weaning process – slowly reducing the dose every 3-4 weeks.  This will take up to 5 months this time so by the end of the year I may be completely off this drug.

Amit confirmed in my consult this week that taking Steroids will be part of my on-going treatment and this could be for a number of years.  He has patients that are on low doses (1-2mg/day) many years after their initial treatment for Leukaemia.

I have resigned myself to this fact and consider if this is the worst outcome of my recovery I am a lucky man.  The GVHD is not restricting what I do and in the big picture is a small price to pay for a return to health.  I admit it is a little annoying having to take the myriad of other drugs to counterbalance the effects of the steroids but once again a few pills a day is a small price to pay!

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Just a few of the drugs that I need to take for the month. Valaciclovir is an anti-viral drug and I take 12 tablets each day.

The lichen planus on my hands has finally started to resolve and my skin is almost back to normal.  And the only other irritation has been GVHD in my mouth with has also developed into Oral Thrush. A few more drugs and this seems to be subsiding!

My blood counts from this week’s tests were all in the normal range.  Hbs 138, Wcc 12.4 Platelets 196, Neutrophils 9.1 and Mg 0.82.  Amit has now put me on monthly blood tests rather than fortnightly – another milestone.

Earlier this month I had a ‘Flexible Cystoscopy’ of my urinary tract (ouch!).  This was to check for lesions in my bladder and urethra as I had been passing blood in my urine from time to time.  Luckily the urologist did not find anything of concern and in fact commented that it was the ‘tidiest’ he had seen in recent times!  This was a big relief as I had feared the worse.  He explained that my prostate gland had developed a slight vascular condition which was contributing to the blood.  In his opinion this was not anything to be concerned about.

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So all in all things are moving ahead really well and my recovery is certainly looking very positive.  Amit indicated that apart from dealing with the GVHD issues there should not be any other new issues or matters of concern.

Other Things

We had a couple of days with Claire and Toby at Cape Leveque getting the hang of their camper trailer and we thoroughly enjoyed our subsequent camping trip across Australia travelling from Broome to Melbourne in 2 weeks via Marble Bar and the West MacDonnell Ranges.  Claire, Jan and I were joined by my sister Fiona who is married to Jan’s younger brother Michael (all very close I know!).

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img_5918.jpgWe made a quick trip from Alice Springs back to Camperdown in Vic to see Dougall play a game for the Port Fairy Seagulls (est. 1868!)

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And back on the farm in Tassie the grass is green and the sheep are happy!

 

July 2019 – GVHD strikes back

I guess the last blood tests were a little warning that things were not going so well and of course given more time that is exactly what the situation was.  Over the past few weeks I hadn’t been feeling so well with considerably more muscle pain and more bowel problems including diarrhoea which is an obvious sign of GVHD.  And to top if off the Lichen Planus on my hands had flared up again.  All things pointed to another bout of GVHD and although I was keen to ‘self-medicate’ I resisted the urge until I had discussed the options with Amit.

One of the first things he zeroed in on was the blood count for the Eosinophils, which normally rests at less than 0.1 but last test was up to 0.8 and this week rose to 2.2.  This is a ‘marker’ for GVHD and was enough for Amit to put me back on Prednisolone, starting at 20mg per day.

Amit had said some time ago that my journey this year would involve ups and downs with GVHD and having to continually go back on steroids as a countermeasure.  Despite this I had hoped that my recovery might have progressed a little more smoothly.

The good thing is once I had started taking the steroids again I immediately started to feel better.  The muscle pain eased within a day and I regained the energy that the GVHD had obviously been taking away.

Blood counts are now sitting at 134 for Hb, 13.4 Wcc, 154 for Platelets, 4.2 for Neutrophils.

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One of the side effects of being back on Prednisolone is increasing the dose of Valaciclovir back up to 12 day!

Joe Trapani

To show our gratitude for the care and treatment received at Peter Mac (ie The Victorian Comprehensive Cancer Centre) Jan and I made a donation to research (apparently the full cost of treating a leukaemia patient is close to $1.5m – so I guess there was some room to help out!).  Through the Peter Mac Foundation we managed to sponsor some leading research under the Direction of Professor Joe Trapani who is the head of the Cancer Immunology Research program.

Joe and his team are working on a targeted therapy for GVHD, which of course was of interest to us.  We managed to meet with Joe and discuss his research which after 10 years in a laboratory with mice is about to be tested with humans.  He is hopeful of launching a new medication within a few years that will replace the need for the blunt instrument of Prednisolone for treating GVHD of the skin.

We were fortunate enough to tour the research labs at Peter Mac.  There are 650 researchers currently employed there – it’s a leader in its field throughout the world.  I certainly ended up at the right place for my treatment.

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Jan with Steffi Chang from the Peter Mac Foundation.

Other things

We have enjoyed spending more time on the farm in Tasmania.

CASA have come good and returned my medical without any restrictions – which means I can go flying again solo once I am retested by an instructor.  This is good news and something I have been waiting on since the day I first got sick.

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We are currently in Broome having joined Claire and her boyfriend Toby earlier in the week for a few days of outback camping and expolring at Cape Leveque.  Following that Claire, Jan and I will be joined by Michael and Fiona Sheridan to drive back across the desert from Marble Bar to Alice Springs (sadly Toby has to return to Victoria for work).  We will join up with the Thomson family from Wagga Wagga at Marble Bar.

 

June 2019 – Blood counts drop

Things have been tracking along well for the past few months (apart for the Lichen Planus on my hands) and I was quite buoyed by my progress.

However my latest blood tests this week showed a significant drop in all parameters.  Amit was not overly concerned but thought it may have been as a result of a virus or some other infection.  The problem is that I haven’t felt unwell in the past few weeks – so of course my mind is asking “what can it be?”.

Red blood cells have dropped from 143 to 125, Platelets from 216 to 100 (of greatest concern), white blood cells from 13.5 to 6.6 and neutrophils from 9.6 to 2.7.  Creatinine and Magnesium are both steady at 75 and 7.9.

Amit has suggested we wait for the next set of blood tests in a fortnight before jumping to conclusions.

The good news is the Lichen Planus has improved considerably, although is still evident.  It is treated with a steroid cream which seems to be doing the job.  Once again it is probably a condition that will come and go over the years and something that I will have to live with.

The other issue that has been under investigation is the evidence of blood in my urine.  I have had an ultrasound of my kidneys and prostate gland but this did not reveal anything (other than the prostate is quite small) so the next round of tests include a CT scan of my urinary tract and a cystoscopy (internal examination of the urinary tract) which should reveal more.  My urologist is investigating for evidence of cancer.  Stay tuned for more information!

Other things

We have managed to experience a few interesting things in the last few weeks including:

A visit from my Mum and Dad to Tasmania for a week.  We managed to install the ‘family swings’ that my father built in 1966 for us – which has been moved from house to house over the years.  A family heirloom!

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A day out at the Campbell Town show – Australia’s longest running agricultural show established 181 years ago!  I even felt tempted to join up with the local pipe band.

Returning to my old Rotary Club in Wagga, Wollundry Rotary, to thank members for their well wishes and to co-ordinate a fund raiser for the Leukaemia Foundation where 11 members (and one wife, Kath Wallace) shaved their heads!  We raised close to $20,000 on the day! Thanks to all who shaved and gave!

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A trip to Kununurra and Broome to catch up with business partners Michael and Kate McConachy.  There are many new faces in the business since we last visited about 2 years ago.  This pic is of Tim Heasman (Head of checking and training for Aviair) with one of our PC12s at our Broome base.

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Some great weather on our farm in Tassie – even though we are seeing minus 2 and 3 some mornings!

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And of course a few bike rides with Ross Williams and friends in the great Tassie bushland.

 

May 2019 – Up in the air!

During the early stages of my recovery from Leukaemia I set myself 3 goals.

  1. Return to health
  2. Continue spending time with family and friends
  3. Return to flying

The first goal was of course the obvious and although I have made good progress I can become frustrated with slowly this takes place – especially with my physical strength.  I still can’t do a full push-up!  But things are improving with steady work.  On the positive my haematological parameters seem to be tracking along quite well.

We have enjoyed visits from lots of family and friends and as I’ve said before this is a key part of my overall recovery.  Group therapy has a lot going for it!

But my third goal was one that seemed all elusive. However this month I achieved that as well.

I spent a few days flying with good friend Eric Saacks (and instructor Neil Hughes) in Eric’s new Robinson R44  helicopter VH-EXD at Port Macquarie.  This was a huge milestone for me.  I am still waiting on my medical certificate from CASA (currently being reviewed by a team of specialists!) but I am able to fly under instruction.

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The Ups and Downs of a GVHD  patient

Not long after my last blog I hit a small snag.  I noticed some nasty little wart like lesions growing on my hands which did not seem normal.  Being concerned about GVHD I sent a photo to my haematologist, Amit Khot and surprisingly on a Sunday he emailed back straight away to say he thought it might be shingles rather than GVHD of the skin.

A visit to our local after hours GP clinic confirmed it was unlikely to be shingles but an exact diagnosis was not forthcoming.

So after a number of trips to the Dermatologist in Melbourne with two different biopsies of the affected area on my hands I finally have a diagnosis of GVHD related Lichen Planus.  (I would point out that Dr Saacks suggested this diagnosis some time earlier!) This is an inflammatory reaction common in immune deficient people.  It is readily treated with a steroid hand cream and luckily in my situation this is having effect.  My dermatologist had suggested it may have been either Pompholyx or Epidermodysplasia verrruciformis (but advised me not to Google this condition!)

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I must admit during the long period to diagnose and then start treating this situation I was becoming very concerned.  The lesions had spread over most of each palm and fingers and was preventing me from using my hands for many things.

Luckily I am now moving past this.

At the same time my mouth and lips became quite severely affected by GVHD with Wickhams Striae – white lesions that commonly occur during GVHD making drinking and eating noticeably more difficult. No surprise this time treatment is with more steroids – this time a mouth wash (Dexamethasone) and lip cream.  I love my steroids!

I felt like I was about to slip down another large Snake in my life game of Snakes and Ladders!

Over the past few weeks I have also received booster injections for my immunisations. The ‘live’ boosters of measles, mumps and rubella need to wait for another 12 months.

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Meeting with Amit Khot

Due to my concerns with the skin lesions and being in Melbourne for appointments with my Dermatologist I have met up with Amit twice now in two weeks (following four months of telehealth appointments).  It gave me a chance to look him in the eye and ask a few more tough questions!

At our last consult he confirmed my blood counts were still in the normal range and holding up well – a big relief.  Interestingly living from ‘blood count to blood count’ is not such a big thing for me now.  I am more interested in improving health and fitness.

For the record my Red blood cells are around 136, White Cells 10.3, Neutrophils 5.6 and Platelets 188.  Creatinine is around 76.  Magnesium levels had dropped slightly to 0.77 which is a function of cutting back slightly on my 4 Mg tablets a day.  I might have to increase them again.

Over the last few months I have noticed some blood in my urine.  Amit showed immediate concern for and and has ordered some tests to help diagnose any problems.  Urine sample, ultrasound and then perhaps further investigations  – ouch!

I managed another joke with Amit suggesting that he now has a new scientific paper in my hand lesions as he indicated in his 25 years of treating leukaemia patients he had not seen GVHD present like this.  (I thought I might have to accompany him to his next US conference!)

Overall I have found that my recovery is progressing nicely and being back in the fresh open air of Tasmania has been wonderful.  It is great just to get out and about and do some normal things.

What else has been happening?

I have now released my first PodCast!  Kennedy Lay my physiotherapist in Docklands put together a short interview during my treatment with him.  It takes me through my treatment and experience and may be of some interest to readers of this Blog.

Give it a go.   #003 – Geoff Hamilton.mp3

We have been travelling a bit for business and family catch ups and continue to get visitors dropping in from time to time.  We love it!

We had a bunch of visitors on the farm over Easter including our ex Rotary Exchange student from Belgium Eugenie Coche and boyfriend Arthur.

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Claire performed Bridesmaid duties for good friend Sophie Sutherland at a spectacular wedding in Corryong, in the Upper Murray.

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And we managed a 3 day horse trail ride in the Victorian Alps.  Not bad for a person who has only been on a horse 4 or 5 times in his life.  It was a superb trip with some absolutely memorable scenery – real Man from Snowy River stuff!

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And meanwhile back at the farm the new watering system goes in!

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…. and the Hamilton Family swings have gone up, yet again!! (53 years after first being constructed by my Dad for Tony, Fiona and me).

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And Jan has been busy in her veggie garden.

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April 2019 – All going well

Today was another ‘TeleHealth’ consult with my Haematologist Amit Khot.  There was not much to report on as things have been going very well in the past 3 or 4 weeks but Amit did have a pleasant surprise for me.  That was a reduction in my daily drug intake from around 24 tablets a day to just 6 a day – absolute bliss!

Amit was of the view that my liver and kidney function was almost back to normal.  And as my steroid dose has been reducing over the past few weeks I am now able to drop from 12 Valaciclovir (anti-virals) down to just 1 a day.  Similarly the Ursofalk (for liver issues) was able to be dropped altogether, and the Preds are now down to 5mg a day with a slow weaning over the next few weeks.

The blood counts are again very stable with Haemoglobin at 136, White Blood Cells 8.4, Neutrophils 5.7 and platelets 169.  Creatinine was 95 which is well under the 110 mark indicating my kidney function is back to normal.

All in all this was good news and in line with how I feel at the moment.

I asked Amit why I had needed a Stem Cell (Bone Marrow) transplant given that the first round of chemotheraphy was very effective leaving me in total remission.  His answer was ‘its a bit late now to ask that question’ – one of the few moments when I have seen a little bit of humour from him!  However he did explain that research had shown the combination of the type of Leukaemia I had (AMML) with the FLT3 Mutation was best treated with Midostaurin (the horrible big smelly pill from America!) and a Stem Cell Transplant.

I must say I am very grateful that Amit is up to date with the latest research and of course I value his judgement.

Amit also helped out with a comprehensive letter for CASA covering my treatment and prognosis and local DAME Stewart Graham helped me with my application to CASA for the return of my medical certificate.  Hopefully I will have that in a few months.

Leukaemia Foundation

Last week I attended a bi-monthly support group meeting held in Launceston.  To my surprise about 20 people were in attendance including one person who had been coming for over 17 years!  The CEO of the Foundation, Bill Petch spoke about the Foundation and recent research into Leukaemia.  I have always found these meetings helpful as you can always learn from others and it is good to share experiences.  It also makes you realise that there are plenty of people who struggle with their recovery for many years.  My recovery by comparison is going extremely well.

Other happenings

We have had some wonderful visits from family and friends as seen below:

A group of 20 Wagga ‘bikers’ and their wives and partners.  We joined them for a ride to Lake Pedder and Lake St Clair.  Good friends Pete and Sharon Clucas were the organisers and far too quick for me to keep up with on the road!

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Jan’s brother Andrew, partner Heather and their children- twins Maggie and Ned and Jack came for a few days and walked the 3 Capes Walk with us.  This is a 48km hike over 3.5 days carrying packs (18kgs for me).  I was extremely pleased to have completed this one demonstrating that my health is slowly returning to normal.

The GrimShaws and Youngmans from Victoria joined us for a lovely weekend at PumpHouse Point, Lake St Clair.  We enjoyed a few walks, some lovely meals and a few drinks as well.  On our last day we were surprised with a covering of snow on the nearby mountains.

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We arrived back at Milford just in time for afternoon tea with Jo and Nick Middendorp who were travelling between Hobart and Launceston for work.

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Victoria, Georgia, Chloe and Milly Watson called in for afternoon tea yesterday

Fi and Michael Rouch made a quick visit for a couple of nights and left this morning.

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I have managed a few bike rides with Ross Williams, Jay Loane, Ian Herbert and Perry Wilkinson.  I must say I really enjoy these days out on the bike. We generally ride 300-400kms in a full day including a nice stop off for lunch somewhere.  Last week it was Pipers Brook winery.  I am getting to know the back roads of Tassie pretty well thanks to Jay Loane.

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We have also managed to squeeze in a few farm related field days including an Agro Forestry day and a Precision Farming Field day.

Until next month…….

 

March 2019

At present I am meeting with my haematologist once a month so I guess that is a reasonable cycle to update everyone on how my health is progressing.

Today was another ‘Telehealth” session with Amit Khot.  This is a simple process of basically Skyping him at the appropriate time (and of course waiting the obligatory half hour or so while he gets through his backlog of patients!).

Today’s consult was very straight forward.  Amit firstly reviews my latest blood test results (from last Friday in Launceston) and then suggests changes to drugs if required.

The good news is that I have started to wean again from the Prednisolone (steroids) and have reduced this down from 20mg per day to 15mg.  Each step down will occur after two weeks and this time rather than reducing from 10 to 5mgs Amit would like to step down to 7.5mg.  This will spread the weaning process out to at least 3 months.

Amit indicated this is perhaps the best way to ‘train’ my body to overcome the GVHD problems I am currently experiencing.  He indicated the GVHD will come and go throughout the next 12 months and steroids will be a tool which is used to fight this disease.  At least I know my brother’s immune system is strong and operating well within my body!

At present I feel very well and on most days I would rate my health as 80-90% of what was ‘normal’ although this can vary quite unexpectedly.  Tiredness and a lack of energy would be the most obvious things that have an impact on how I feel but in the scheme of things this is quite minor. At least I can get ‘out and about’ and do most things that you would consider to be part of a ‘normal life’.

I have not experienced problems with abdominal pain or diarrhoea in the past month or so which has been very pleasing.

All in all things are progressing well and I feel like I have ‘climbed a ladder’, recovering from the last slippery snake that took me backwards last month.

My Haemoglobin is steady at 128,  White Blood Cells 10.3, Neutrophils 8.2, Platelets 168 and Creatinine 96 – all  results are in, or close to, the normal range.

And on top of that my liver function has almost fully recovered and according to Amit is of no great concern at this stage.

I am currently in the process of re-applying for my pilot’s licence which involves getting a letter of review from Amit plus results from a brain MRI and CT Scan of my body.  Although these tests are unrelated to the Leukaemia it appears that CASA believe you will ‘drop dead’ as soon as you step into an aeroplane and want to check out all possibilities before they allow you to fly again.

Other things

We have had a great few weeks with plenty of visitors in Tassie (which we love) and a trip to Melbourne and Wagga to catch up with friends and business matters, thanks for having us to stay Liz and Pete Dowling.  I even managed a day at the Avalon Air show which got me thinking about getting back in the air once again.

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We arrived back in Tassie just after a massive hail storm, which looked like it had snowed at Milford.
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We visited our ex Wagga neighbours the Butt family for a great catch up!
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And the Tuckers as well.
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Business Partner Mike McConachy made the trip down from Kununurra to attend some meetings in Melbourne and the Avalon airshow.
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Chris Cabot from Wagga Air Centre believes a TBM is the way to go. The TBM rep, Mark Diaz tried hard to sell me one!
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Ian Herbert, the man responsible for me purchasing a motorbike has finally purchased his own! And he managed 1500kms in the first 3 days of ownership!
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Steve Duncan flew down from Sydney for a weekend to take me trout fishing. I managed to catch my first trout in our river!

Back on Steroids

It has been about a month since my last blog and there have been a few developments so I thought I would update everyone.
On the great game of Leukaemia Snakes and Ladders I have recently landed on a Snake and have slithered back a few rows. Luckily this is not a big one, but nevertheless  a setback that is not welcome.
I am currently having blood tests every two weeks, and towards the end of January my consultant detected a strange increase in the Eosinophil level – which is one indicator that GVHD has returned.

The Eosinophil is a white blood cell that is primarily used to fight diseases or infections (in a similar way to neutrophils) and an increase beyond 0.5 is considered to be outside the normal range.  In my blood test at the end of January this was sitting at 2.3 and rose to 2.9 early Feb – ringing alarm bells for Amit Khot (my consultant haematologist).

Amit was quick to put me back on steroids and could not accurately pinpoint where the GVHD was attacking – other than it had obviously flared up.

So after just 3 weeks off a very low dose of Prednisolone I am now back to 20mg a day and the weaning process will take another couple of months.

After just four or five days the Eosinophil level dropped back into the normal range indicating that the steroids had started to work.

Of course the usual side effects from the steroids come into play.  I have to increase the anti-viral drug Valaciclovir from one tablet a day to 12 taking me back up to around 24 tablets each day.

The other unusual issue at present is a continual ache of my muscles and bones.  I am currently managed this with panadol two or three times a day and although it can be quite severe I can generally manage most normal things during the day.  The pain usually subsides by about lunchtime.  As one of my mates commented recently “don’t worry I feel pretty sore and slow until about lunchtime on most days so you’re not on your own!”

Apart from these issues most other things are going well.  On a day to day basis I can get out and about and do most things on the farm that need doing.

I must say I am enjoying being in the fresh air and having the ability to get out and about.  Every day is a bonus!

On my last blood tests the results were:

Red Blood Cells – 125, White Blood Cells 11.3, Platelets 204 (yippee!), Neutrophils 8.1 and Creatinine 96.  These are all now in the normal range (or even at the high end).

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These counts are up a little from the previous tests – a normal response to being on steroids.

My last consult with Amit was done via ‘Telehealth’ – basically a Skype session.  This was a great way to exchange information and of course saved us travelling to Melbourne for a 30 minute consult.

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Other happenings

Jan and I recently did a great day’s touring of the North East of Tasmania.  We took a few back roads (that I had previously explored on my bike) and ended up at Branxholm for a coffee (and dropped in to a local Flower Show), then Gladstone for a pub lunch before heading up to view the 56 Wind Turbines at Cape Portland.  We headed home by the coastal road dropping in to see the famous “Bay of Fires” north of St Helens.

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And I have been out and about on my bike this time with Jamie Loane, a neighbour, who knows the back roads around Eastern Tasmania.

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The chook shed is almost finished.  Next the vegie garden!

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The Johnny Farnham Blog

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!!

graph platelets

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!

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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.

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img_3993.jpgJohn 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!

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