Article for AML News

This week’s blood tests results included a little surprise.  In the main the results were still pretty stable.  The Red Blood Cells (Hb) had dropped a little to 88 but the doctors tell me this will bounce around  somewhat and it is not unusual to require a monthly top up with red blood cells for quite some time in the future.  My last blood transfusion was a month ago so I am expecting in the next week or so I’ll be heading back for a top up.

The White blood cells are doing well at 5.2 in the normal range, platelets have dropped a bit to 52 but are still well above the level requiring a replacement.  My Neutrophils are 3.6 – again in the normal range.  Kidney function (Creatinine) is doing well at 87.  My liver function is in the normal range.

But the CMV (Cyclomeglavirus) has started to get out of control.  This is not unexpected and is a direct result of being on the steroids for the Graft vs Host disease of my gut.

The solution is to increase the anti-viral drug Valaciclovir from 1 tablet a day to 12 tablets.  As with most things this will have another side effect – it is quite toxic on my kidneys.  I will expect to see the Creatinine level increase drammatically – which can be partly offset by increasing my fluid intake.  I have been there before!

If the Valaciclovir does not lower the CMV level then the back up plan is another drug that is IV administered but this will require daily visits to hospital!  Let’s wait and see.

There is no doubt the treatment for Leukaemia is one of many ups and downs and nothing can be taken for granted.  As I have always said it is one day at a time.

I have now also started a rehabilitation program at the Epworth Hospital which involves several sessions around psychology, nutrition, physio and Occupational Therapy.  I am hoping this will help rebuild by strength as my arms and legs feel very weak at present and my muscle mass is almost non-existent!

My normal weight used to be around 84 kgs but I have been sitting on 76 kgs for quite a few months now and have finally seen this starting to climb.  I’m up to 77 now and still climbing slowly which is pleasing.

Weekend activities.

On Saturday we drove down to Cranbourne to visit the Botanical Gardens that were first created there is 1970.  It is a lovely collection of plants imitating landscapes Australia wide and there are some great walks through the  beautiful bushland.

On Sunday we drove up to Dookie to visit good friends Richard and Alice Tallis (and godson Sam!) for lunch and a look around their farm.  The Tallis family have been involved in wine production for many years and now have a fabulous Cellar door where we enjoyed a beautiful lunch before heading up the nearby hill for a great afternoon walk.  It was good to make a trip out of town.

We’v also managed to see a few films lately including Edie and Breath.  Breath is based on Tim Winton’s surf novel and has some great surfing shots in it!

 

 

I’m in new territory now with a weekly visit to the hospital to have a blood test and my PICC dressing changed, but no consult with the doctor.  The consults will only happen monthly unless there are issues detected.

When the doctor informed me of this I felt a little strange so requested the ability to get the blood results via email after the tests each Tuesday.  He said there was no system for this but gave me an email address to follow up.

So I can report from today’s tests things are still very stable.  Red Blood Cells (Hb) are 97, White Blood Cells 8.9, Neutrophils 7.1, Platelets have dropped a little to 62, Creatinine 85 and Magnesium and Potassium in the normal range.

So this is pleasing and in my mind slowly confirms that things are stable and going well (as the doctors say!).

I have generally been feeling pretty well and we still manage on most days to get around 10,000 steps of walking in, either to the hospital and back or perhaps into the city and back.

We ventured out on Sunday to visit Jan’s parents and family at Bairnsdale for an overnighter – my first this year!  This was a big step as what was once a regular part of our lives (trips away) has become something of a distant memory.  It is quite unsettling to trip out of town and ‘so far away’ from the hospital – just in case it is required!

 

We had a fabulous time and of course Jan’s mum cooked up a lovely Sunday roast and invited Jan’s brother Andrew, Heather and children over to help out.  We took a farm tour on the Monday morning to check out the drought conditions of the farm.  They are hand feeding all their sheep as pasture growth is sparse.

 

 

 

 

Other catch ups with friends included:

Peter and Liz Dowling from Wagga (and farmers at Condo).  I have been busy making Liz some pom poms for a mobile she has put together for her grandson.

Our Tassie friends Cat Nichols and Ian Herbert and Rob and Jo Bradley were en route Sat night at the airport travelling to Canada to see their gap year boys.  We headed out to the airport with a few beers to have pizza and watch the Wallabies test vs Ireland.  It ended up being a great night out!

Sunday breakfast we caught up with Ross Williams from Tassie and daughter Anna.  Ross had come over for the rugby complete with a lovely bag of home prepared lamb chops.  Greatly appreciated.

Then on Monday night a surprise visit from our old next door neighbour – Steve Butt.  Steve was in town for a conference and had a spare hour so dropped around for a visit.

I must say hardly a week goes by without two or three friends getting in touch and coming for a quick visit, lunch or even dinner.  It really has been a most unexpected benefit of being sick and stuck in  Melbourne, but one that has certainly helped keep us connected with our friends and that has made a huge difference to my recovery – thankyou!

And finally another masterpiece done – thankyou Darren Wallace.  A good challenge.

And the bonus is we have found a new home for the puzzles – both our local library at Docklands and the Peter Mac library gladly receive gifts! A good re-cycling option.

 

Last week’s blood tests showed some positive results.  My doctors have indicated that not only is my leukeamia in ‘deep remission’ but the blood counts are relatively stable with Hbs up around 100,  Wcc and Neutrophils in the normal range and my platelets are climbing – around 81 at the moment.  As I’ve mentioned before the platelet count is perhaps the best indicator that the Bone Marrow is working as it should, producing new blood cells.

The steroids seem to have knocked the diarrhoea over and apart from some abdominal pain from time to time my gut seems to be handling the GVHD pretty well.  Let’s hope this pattern continues as I start my weaning process from the steroids.

Today we met up with Head Consultant Amit Khot.  He was once again pleased with the blood results saying everything looks very promising at this stage.  Results were as follows:

Hb – 99,  Wcc  11.9,  Platelets 81, Neutrophils 9.2 and Creatinine 87.

He now only requires to see me on a monthly basis and does not think my blood results will change radically over this time.  He indicated it could take up to 6 months for the Red Blood cells and Platelets to recover to the normal range but did indicate that for many patients they don’t actually make a full recovery.  He said he’d be happy with Red Bloods Cells being stable at 100 or slightly higher.

The weaning process from  the steroids will take somewhat longer than I had expected with a drop in level every two weeks rather than weekly.  All things going well this will take me out to mid August (almost 12 months from diagnosis) before I will be off the steroids and cyclosporin.  Oh well, just keep on taking the drugs!

Catch ups

We seem to have had quite a busy time catching up with friends over the past week.

 

 

Elizabeth Balderstone (Dub) called in for a cup of tea on Thursday.  I haven’t seen her for a few years and this was quite special.

 

 

I had two ‘aviation days’ on Thursday and Friday.  Firstly Rick  Pegus from Navair in Sydney had flown my plane down with a group of people attending the Rugby League State of Origin.  My plane is also being extensively used (out of Bankstown) for aeromedical work  where seats are removed and a stretcher is fitted for transporting  ill patients across the country side.  I was keen  to have a look at the plane as I had not set eyes on it since last August and wanted to see if there had been any noticeable damage from the new operations.  All was well.

And Chris Cabot from  Wagga Air Centre was in town Thursday night/ Friday morning with a charter in Paul Mara’s TBM 850.  This is a beautiful plane and I couldn’t resist the temptation to run  Chris out to Essendon and have a sit in the aircraft.  It was good to catch up with Chris – who also advised me that Mark Wallace (his aircraft engineer at Wagga) was in the final stages of palliative care for melanoma.  Mark was first diagnosed at about the same time as I received my diagnosis.  Unfortunately Mark passed away last weekend – a very sad time indeed.

Jan was keen to visit the new MoMA exhibition at the NGV so that filled in a few hours on Friday.  It was full of very recognisable exhibits from New York – and lots of people!

 

 

 

 

On Saturday and Sunday we caught up with Paul and Gioia Giannotis and their boys Oscar and Rohan.  Paul is our CEO of Proway livestock equipment and not only did we have a good social catch up but spent some time going over business matters.

We spent a great couple of hours at the Melbourne Aquarium and then visited the very interesting ‘Artvo’ interactive art display in Docklands.  This resulted in some  quite stunning photos.

 

On Monday we caught up with the Rouches and Irvines and managed a lovely bush walk (in the middle of Melbourne at Braeside) before sharing lunch at Hampton.  We enjoyed swapping a few stories and catching  up on family matters.  The Irvines have proudly announced that their daughter Frances is to be married!

 

Time for a haircut!

 

 

 

Friday’s blood tests were very stable as below:

HB 100,  Wcc 7.6, Platelets 55, Neutrophils, 6.1 and Creatinine 90.  No extra products were needed which was a relief.

The doctors have adjusted my steroid weaning slightly keeping me on 40mg/day for the first two weeks before starting weaning.  Hopefully this will not upset the CMV but only time will tell.

Over the weekend we managed some shopping and also caught up with a family and friends.

Claire headed back to Perth with friend Toby for WA’s long weekend.

My brother Tony (the one with the strong immune system) called in for breakfast on Saturday morning.  He was en route from board meetings in Adelaide to Canberra and stayed overnight in Melbourne.

 

 

 

 

We had morning tea with Julia Ham, Karen and Kate Daniel, Annette Burbidge and Maria Anderson all from Tumbarumba.  The Girls were in town for the Carole King musical and had planned a night at Brown Brothers at Milawa on their way home!

 

On Sunday we made another trip out to the Point Cook aviation museum to catch up with Jan’s brother Andrew and nephew Ned.  After that we found a park to play with Maggie and Jack who has been visiting the Werribee zoo with Heather and Heather’s Dad, Geoff and partner Anne.

I’m back to hospital Tuesday for more blood tests so will keep you abreast of any significant changes.

 

Lead consultant, Amit Khot, confirmed at yesterday’s meeting that the bowel biopsy clearly showed I have GVHD (Graft vs Host Disease) of the lower bowel (and gut potentially). Basically my brother’s immune system which has grafted well is now  attacking my ‘foreign’ body!   This occurs in a number of leukaemia patients especially when the immuno-suppression drugs are reduced (cyclosporin in my case).

Although my clinical  presentation is not entirely consistent with GVHD  the tests did not show any sign of bacterial infection and Amit is confident with the pathology report on the bowel biopsies and has put me back on Prednisolone (steroids) which basically kill off the T Cells in my blood which are attacking my gut and bowel.

He has prescribed a low dose to start with (40mg/day) hoping this will return my gut to normal (meaning no abdominal pain and diarrhoea) in a matter of 4-5 days after which  I can start the weaning process of 10 mg per week.  It will take me a month to finish up on the steroids.

When I was previously prescribed Prednisolone (for the GVHD of my liver) I started on 150mg per day. The hope (and professional judgement) of Amit is that the CMV (cyclomeglavirus) will not get out of control this time.  This is the juggling act and it is difficult to predict what might happen.

All I can do it take it one day at a time, and one blood test at a time and see what happens.

In the meantime Jan and Claire are now back home safely which is fantastic.  My mother certainly did a fantastic job caring for me but it is just nice to have Jan home again.  Unfortunately Jan has a travel cold which is making things a little difficult in confined spaces as it is certainly something I do not want to contract.

Lachy and Dougall stayed on in the US and are now doing a bike ride in the Utah desert.  Half their luck!  Good brotherly bonding.

I spent 3 days in Ward 7B and by Saturday the medical team had decided that I was well enough to be discharged.  My diarrhoea had improved significantly.

I still don’t have any results showing what is causing the diarrhoea but hopefully I will get this with my visit to the hospital tomorrow.  Amit Khot, the lead consultant assured me that it is most unlikely to be GVHD as generally the diarrhoea does not let up without treatment.  He believes it is more likely to be some type of bacterial infection which they are still investigating.

Over the 3 days in hospital I received a lot of electrolytes (which rapidly deplete through diarrhoea), including magnesium and potassium.  I also received two units of red blood cells on Saturday prior to discharge.

I felt really well on Sunday but not so well today, although that seems to be how it can go – up one day and down the next.

Over the weekend Stewart and Kate Sutherland (from Tassie and Tooma) dropped in to see me at hospital and then gave me a lift home – very convenient.  They run a huge berry business in Tassie and have just finished picking for the year, where they can have up to 400 people working on the farm on any one day – sounds like a massive headache to me.

 

On Sunday a good friend, Darren Wallace, from Wagga dropped in and we all set off to the Point Cook Military Aviation  Museum.  We spent and enjoyable couple of hours there. It is a fantastic presentation of a wide range of aircraft and military wares.  Thanks Daz for the new jig saw puzzle – will be a challenge.

 

 

 

Later on Sunday we drove over to the Exhibition building to catch up with Dick  Tallis at the Melbourne Food and Wine show.  The place was amazingly busy at 5.00pm but we managed to get some time to have a chat to Dick.

 

And then today Jan’s parents Helen and Allen dropped in on their way through to Ballarat for a sheep sale.  They like to see their sheep being sold in case there is any ‘skull duggery’!

My parents return to Cootamundra tomorrow on the train.  It has been fantastic having them live with me for the last 10 days – they really are easy company!  And my mother has done a terrific job of caring for me – cooking, cleaning and all the things that mothers are traditionally good at!  Dad finished off the (really hard bits) of the farm jig saw puzzle and cleaned my BBQ – a job greatly appreciated!  I also managed to tour some sites of Melbourne with them and completed lots of walks.

I will miss them when they go but on the positive side Jan and Claire return tomorrow from  the US – that time certainly has gone quickly.  It will be great to see them both and get all the stories of the trip.

 

 

What a different a day can make – I am now back in hospital again!

This is the view from my new bedroom!  Well in fact it is my original room No 6, where I was first admitted to Ward 7B back in August last year.

These absolutely stunning dynamic sculptures are now outside each window on the west and northern side of the ward.  This resulted from discussions I had with the hospital way back in September when I spent a month looking at a blank wall!

You could now look at these sculptures all day and not get bored.

I am back in hospital for tests for GVHD (Graft vs Host disease) of my bowel.  This is due to the extended bout of diarrhoea that I have experienced without resolve.

Hopefully I will have tests on Friday (public hospital – long lists for procedures!) and the results will take a number of days.  This will be a colonoscopy and biopsy of the lower bowel.

In the meantime my medical team are tossing up if they should treat this event as GVHD and run a dual strategy of anti-biotics for an infection and steroids for GVHD.  At present I am just on anti-biotics (at this stage the actual type of infection has not been identified but tests are underway).

If the team put me back on steroids it will probably add another 2 months or so to my current treatment plan.  This is life in the world of cancer treatment and something that I will have to adjust to.  I keep on telling myself that another month or so will make no difference in the long run and it certainly is important that we get on top of the issue ASAP.

I will let you know what the results show next week.

Jan, Claire, Lachy and Dougall are now in Portland, Oregon having a few days before they return (well Jan and Claire that is – the boys are off to Utah riding motor bikes!).

Dougall has now officially graduated from Yale and has a degree in Liberal Arts majoring in Economics.  He has been interviewing for jobs back in Australia and at this stage has scored an offer with CBA agri-division based in Warrnambool, Victoria, starting next February.  We are very proud of him as it certainly is an achievement (on both counts).

 

 

 

 

 

 

 

I had some really good blood test results last week which gave me great hope that things are moving in the right direction.

Last Tuesday the Red Blood Cells were 93 and had only dropped to 90 by Friday.

The White blood cells moved up from 3.2 on Tuesday to 6.7 by Friday.

And the platelets have continued to rise, being 48 on Tuesday but 60 by Friday.  This is one of the key indicators that the marrow is working, producing blood cells so I am keeping my fingers crossed.

The neutrophils moved from just 0.8 on Tuesday up to 4.3 on Friday which is back in the normal range.  This is without GCSF support so once again this is giving me more hope.

The magnesium levels were stable at 0.76 as was the Creatinine at 118 (being close to the normal range).

But of course things change quickly in  this game and by Tuesday of this week the red blood cells had dropped to 81.  I needed two units of blood.

The other counts had stayed up pretty well with platelets at 58, neutrophils 2.5 and Creatinine 119.

As I keep saying I can only take one day at a time.  Last Friday I was feeling pretty good but by Saturday I had gone downhill significantly having developed severe diarrhoea once again (my last bout was at the end of February). Unfortunately with my current gut situation this is not something that tends to rectify itself in a few days.  It is on-going.  The doctors have prescribed Flagyl but won’t know if this will be effective until a sample is analysed by pathology.  They think I may well have the ‘C Diff’ infection.  I will know more by Friday.

I needed a large dose of Potassium on Tuesday as the diarrhea tends to deplete this electrolyte.  This took 3 hours to transfuse.

Jan is now in the US with Claire and Lachy for Dougall’s graduation ceremony.  They certainly turn on the activities at Yale with 3 full days of celebrations.  I am missing Jan dearly but we all agreed it was important for her to make the trip and it will also give her a much needed break from my full time care.

In the meantime my lovely parents have made the trip down to Melbourne to help out.  My mother has jumped into the caring role straight away and it has been fantastic having their company.  I think it would be very difficult if you had to go through this yourself.

 

 

The people you see

When walking around Docklands with my parents we bumped into Gail and Peter Crozier from Wagga.  They were down in Melbourne for a few days and by co-incidence our paths crossed.

 

 

 

I also bumped into Jeremy Twigg on the weekend as he and a friend were finishing off a 100km bike ride.  Funny how you can be in Melbourne with 5 million people and still randomly run into people you know.

A lot can happen in a week.  Last week’s visit to the day therapy unit (sounds like a luxury spa) on Tuesday resulted in a unit of blood and some IV fluids.  My Haemoglobin was down to 80, the point where a top up is required.

We had a meeting with Amit Khot, our head consultant, on Friday.  He confirmed everything was still on track but the marrow was slow to recover after the Valgancyclovir drug (as had been explained numerous times).  He would not put a timeframe on the recovery but said it would be a number of weeks.  Until the marrow recovers I will continue to require regular blood transfusions – probably weekly.

Over the week I had been slowly developing a cough from some sort of chest infection which was starting to worry me.  Amit checked me out (chest Xray and throat swab) and said, although my chest appeared clear, I should check in to the hospital if it gets any worse.

I had a tough night on Friday night with shivers and then mild temperatures so rang the doctor at 7B on Saturday for a consult.  She felt it needed further investigation so organised for me to be admitted to 7B on Saturday afternoon (by-passing ED thankfully).

After a number of tests and another chest x-ray and an overnight stay in 7B the team felt I was OK to be discharged on Sunday morning.  However in the meantime my haemoglobin had dropped to a dangerous level of 67 (from 83 on Friday!)  – meaning I required two units of blood before discharge.

My neutrophils were low last Friday at 0.8 so Amit had advised one shot of GCSF which took them up to 2.7 on Saturday, within the normal range. However by Sunday they had dropped back to 1.7.

My platelets had also risen significantly to 38 which was pleasing to see.

After receiving the blood I proceeded to walk back to Docklands – about a 45 minute walk.

Monday has been a good day with my cough being quite manageable and my energy levels OK.

The main challenge for me at present is preventing frustration creeping in where I can see that the end of this stage of treatment is not far off but I don’t have a timeframe which could be weeks or even months.  So in the absence of any better information I have to continue with my ‘one day at a time’ mantra taking each day as it comes.

Last week we drove out to Kew to have lunch with James and Victoria Watson.  James is about 30 days ahead of me in his treatment for ALL and has been going through many of the same things that I have experienced.  It was good to swap some notes with a fellow cancer patient.  Victoria is doing an amazing job as they have 3 young children and their own wool broking business to run.

David Hodge dropped by for dinner on Friday night, being in town for business and footy.  It was good to catch up on some Wagga news.

 

 

 

 

Last week  we also made a great visit to the historic (National Trust) building and  gardens of Ripponlea in Elstenwick.

Claire is back from Perth and we celebrated Mothers’ Day with a family dinner on Sunday night with Claire, Lachy, Toby and Hanna.

Jan, Claire and Lachy head of to the US this week to join Dougall for his graduation ceremony. Unfortunately I am still too ill to travel so will be joined by my parents for some company for the 10 day period.

 

 

It is a strange thing but after quite a few weeks of eating well I have now totally lost my appetite again.  It takes me back to the first few weeks post transplant.  One of my hospital ‘buddies’ told me that appetite is linked to the level of steroids and as you are weaned off the steroids you lose your appetite.  It seems to be the case but I am hoping it won’t last very long – perhaps a few more weeks until I finish up on the cyclosporin.

Last Wednesday I had my 100 day review with one of the lead consultants.  The news was mostly positive but a little anti-climactic.  There had been some discussion I might be well enough to move to monthly reviews but this is not the case.  The review of the 100 day tests showed everything was OK and nothing stood out as being of great concern.

However the medical team have identified that my marrow is ‘flat’ which means it is not functioning in the normal fashion to produce the range of blood cells required.  Apparently this is not unusual and is a direct result of the valgancyclovir that I was taking for several weeks – it is a potent drug that adversely affects your marrow!

So for the time being I will be making weekly visits for blood tests and check-ups.

I have also been weaning myself off the sleeping tablet – zopiclone (unsuccessfully) which I have been on since January.  Jan is worried I will become addicted!  I am down to half a tablet every second night, but last night’s sleep without this help was terrible – maybe I am addicted.

Over the weekend I developed a nose bleed that took 4 hours to resolve – making me think my platelets are dangerously low preventing clotting.

 

 

 

 

 

 

 

 

 

On Saturday I had a day long visit from my good friend Steve Duncan from Sydney who is an avid fly fisherman.  Steve showed me how to tie flies (with some help from YouTube) and then took me to the local park for some casting lessons.  We enjoyed a nice lunch in town and shopped for a few more necessities.

 

Today we had a special excursion north of Ballarat to see the Lambley nursery and garden near Clunes,   it was a wonderful day out.