Month: May 2018

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.