Article for AML News

The big news from this week’s visit is the fact that I have confirmed Graft vs Host disease of my liver.   Whilst this is not ideal the medical team are happy in a way to see this as it confirms that my brother’s immune system is strong and having a ‘go’.

Today was a usual visit to hospital with the normal blood collection in the morning and then a 1.5 hr wait while the blood samples are processed so the doctors can analyse the data and make an informed decision on where to from here.

In my case I needed a litre of IV fluid with magnesium just as a top up.  All my other blood results were good although the WCC and Neutrophils were a little higher than normal due to the large amounts of steroids I am on for GVH.

The steroids have a secondary impact on sleep making it difficult to get much without taking extra sleeping tablets.

Whilst at hospital good friend Matt Kibble dropped in for a quick chat – it was good to catch up on his news.

And finally I snapped a shot of Jan at Docklands with her beautiful new scarf that Claire found at a market on the Mornington Peninsula last weekend.

Oh yes Michael and my sister Fiona have just had some time in Kenya and took some awesome wildlife shots.

I was discharged from Hospital again last Friday afternoon with no night temps and things seemed to be going ok.  My abdominal pain had subsided and most of the diarrhoea had moved on which was very welcome news.

We spent the weekend reading papers and catching up on a few phone calls to family etc. Claire made another trip east to catch up with us.

We headed to Lygon Street after a quick trip in to 7B to have my PICC dressing replaced on Saturday afternoon. I needed some new trousers as I’m down to 75kg and having trouble keeping my pants up! We also caught a movie Sweet Country – which ended up being quite  bleak , the walk back from Lygon Street was about 14,000 steps so a good bit of exercise.

On Sunday we cycled over to the punt under the Westgate Bridge and back home via Yarraville  – about 15 kms round trip.

On Monday walked up to Peter Mac for an out patients visit with some unexpected consequences.

After seeing the medical team they thought everything was going OK but upon a further review of my blood test results decided my liver had “gone off” and was showing signs of some Graft Vs Host disease (GVH).  Treatment involves higher daily doses of steroids (150mg per day now) and and additional liver treatment. Graft vs Host is something they want to see at low levels.

So I spent the afternoon in hospital getting a top of two bags of potassium plus a litre of saline to help bring my creatinine level down again – it seems to bounce up and down like a yo yo.

For the time being I’m out of hospital, no temps and feeling quite good with the exception of the steroids which cause severe lack of sleep and don’t make you feel so good.  But if it helps control the GVH then I’m up for it.

Lachy popped in the dinner on Monday night before Claire headed back to Perth.

It is funny how the world works.  I had 4 days in hospital over the weekend and by Monday 26th (which happened to be my birthday) I still hadn’t raised a temperature and things seemed to be going reasonably well so the doctors decided to let me go home.  They were having trouble finding the source of my high temperatures which is normally an infection of something they can treat with anti-biotics.  But in this case it appeared that I was not carrying an infection.

So home I went on Monday afternoon in time for a lovely birthday celebration with Jan and Lachy.  A few presents were shared and we enjoyed a nice meal – although for me I’m still on the cut down version without any appetite!

On Tuesday I experienced an unusual amount of abdominal pain which persisted most of the day. By lunchtime I was not feeling so well so took a nap after lunch and rested for most of the afternoon only to get up and find my temperature was climbing quickly.

We watched it for about an hour but to no avail – it was well over 38 at 38.7 so unfortunately there was no way out but back into hospital.  We rang Ward 7B and they confirmed they should have a spare bed for the night but we still needed to go through emergency.

After being admitted (1.5hrs) and seeing a doctor (1 hr) I got the usual blood tests (septic workup for high temps) I rested for a bit before being transferred to room 22 in Ward 7B by about 11.00pm.

The Doctors are still miffed by my condition as they still cannot find an obvious source of the high temperatures.  They organised a CT Scan of my lungs to re-check the old infection – and found that was all clear – a big relief!

On the Wednesday I also received a top up of potassium, magnesium and 2 units of blood as my haemoglobin level had dropped again.

The next thing for Thursday was an endoscopy to check on my bowel.  They are looking for obvious stress on the bowel and the possibility of Graft vs Host disease which affects the gut and bowel first.

The results showed GVH may be a possibility but this can only be confirmed from the biopsies they took which will take 4-5 days to analyse – more waiting.  In the meantime the doctors have changed my medication slightly adding Steriods for the possibility of GVH.

So at this stage it looks like I will have a reasonable stint in hospital waiting for confirmation on GVH and if this is the case it may well be another 2 weeks in hospital while this settles down.  I feel reasonably well and have not had any abdominal pain at all today which makes me wonder what really is going on.

My lovely parents gave me a Spirograph kit for my birthday – something to keep my busy for quite some time.  We all remember this as kids!

I will keep you posted!

It has been a busy week one way or another with a few interesting things happening.

I had my usual visits as an out patient to Peter Mac on Monday and Thursday (cut back to two visits a week now not three).

Monday was a good news day and apart from the normal blood tests and IV fluids I received some good news regarding my Chimerism level.  My level has been assessed at 100% for both Red and White blood cells which the doctors say is a good result – most people come in at around 70-80% with their first chimerism test.    As you could imagine I was very happy with this news.

Chimerism: The state in which donor cells have durably engrafted in the recipient. Full donor chimerism implies that 100% of bone marrow and blood cells are of donor origin, while mixed or partial chimerism means that recipient cells are also present.

On Tuesday and Wednesday night my temperatures increased significantly and at one stage went over the magic 38  mark.  This is when you are supposed to present back to Emergency to be re-admitted.

I let this run for a few nights but in speaking to the medical team on my Thursday visit they were adamant that at 38 degrees I must come in.

Thursday’s visit was a long one – lasting more than 8 hours.  I had to have a blood transfusion (which can be every week or so) and then a change of the PICC dressing.

More blood tests

On Thursday night I went to bed early with temps climbing but didn’t sleep well and was awake at 1.30am and decided to check the temperatures which showed up at 38.2 – so we made the decision to head into Emergency.

This process took some time and the doctors put me on IV anti-biotics and took more blood for culturing to see what bugs they can grow.  I was moved from ED to another ward for most of Friday and then up to Ward 7B on Friday afternoon – they like to have all leukemia patients on this Ward if possible as the haematology procedures are very specific.

Hopefully the stay will be fairly short just a day or two but this will depend on my temperatures.  On Friday night everything seemed to be OK with a max temp of 37.7 so no need for extra bloods (a septic work up at they call it).

I feel like a bit of a fraud as I feel completely well and apart from some diarrhoea and abdominal cramps from time to time things seem fairly normal.

We had a bike excursion over to East Melbourne on Tuesday for tea and chocolate cake with Mandy McMahon to hear what they have been up to at Brambletye ( the farm across the river from us in Tassie) where they are undertaking an extensive redevelopment of the property.

Our nephew Oscar called in for a catch up on Tuesday afternoon for herbal tea and fresh nectarines. He is heading into his second year at Melbourne Uni and has done a couple of summer subjects to get ahead of the pack. It was great to hear of his plans.

Annette Sackett dropped in for a visit on Wednesday.  She was on her way down to Tasmania for a conference and a small break.  She brought me a home made lavender bag to put in my pillow to help me sleep. We had a good catch up on her new house plans which seem fantastic.

It has been a while since I’ve written a blog mainly due to the fact that there has not been a lot of new news.

I had the normal visit to hospital last Wednesday and Friday for blood tests and top ups with IV fluids.  This went well although you can easily spend up to 4 or 5 hours in the hospital with this process. In fact on Friday we had to wait 1.5 hours after the IV fluids to see the registrar who was running a little behind in her schedule.

On Friday I also met briefly with head consultant Amit Khot who was happy with my progress.  He was reviewing some diarrhoea that I currently have to make sure it is not “Graft vs Host” disease which shows up as significant diarrhoea together with vomiting and headaches.  I had been feeling pretty low for a few days.  His verdict was that things were OK and just to take some diarrhoea medication – which seemed to help.

The numbers seem to be going well with haemoglobin at 91, White Cells at 6.0, Platelets 10, Neutrophils at 3.4, Creatinine 135 and Magnesium 0.67.  Of these the magnesium is the only one lower than ideal of 0.7.

The platelets are the key number now to look at to determine how well the graft is taking to my body and the doctors were happy with what they saw.

I still have to keep my daily fluids up to around 2 litres to keep my kidneys functioning in the right manner.  The Creatinine level is the best indicator of this and if it is greater than 150 the team apply a second bag of IV fluids to help flush them through.

My weight has stabilised at 78kgs which is about 5kgs below my normal weight.  Even though I’m not eating much this good news.

The medical team also cut back the tablets determining that my liver function was back to normal so that meant dropping off another 4 tablets a day.

I have been sleeping well over the past four or five days, still with the help of a sleeping tablet but at least I’m getting 7 or so hours of mostly uninterrupted sleep.  This makes a big difference for the next day!

We had a few visitors over the weekend and made a few excursions in an attempt to mix things up.

Julia Ham made a visit on Friday night for a good catch up on local Wagga news – we spent a few hours together which was great.

Jan’s parents Helen and Allen Sheridan visited on Friday afternoon and again on Saturday morning.  They were down to see the AFL-X which didn’t impress them that much!

Then on Saturday we had a special visit from John and Sandy Hawkins, our ex neighbours from Wagga.  They had lots of news and it was terrific to see them again.  They stayed for lunch on Saturday but unfortunately with my still very small appetite I wasn’t able to eat much with them.

On Sunday we made a big walk down to the NGV to see the Triennial Exhibition which we had partly seen before but we had missed out on the famous ‘skulls’ exhibit which we were very keen to see.  This excursion took around 4 hours and about 11,000 steps so I made sure my exercise was taken that day!

I will keep you posted as more or new information comes to light but that might only be weekly now as the doctors will be dropping my visits back to twice a week if all goes well with tomorrow’s visit.

I didn’t write a blog last Friday after our hospital visit as there was not much to say, without any new results – but today is different!

Despite initially saying I probably wouldn’t get the results today by the end of our 4 hour visit they had come through – and yes all clear.  This means in the Bone Marrow Biopsy the doctors could not find any sign of Leukemia which is terrific news!  I am still officially in remission. We had been sweating on this result for over a week.

In other things that happened today:

• A litre of magnesium IV fluid
• A litre of sodium chloride IV fluid
• A change of the PICC dressing

My magnesium levels are quite low at the moment being around 0.55 which is largely a result of the Cyclosporin immunosuppressant drug.  This drug is also still affecting my kidney function hence the 2 litres of IVfluid on top of the 2 litres of fluid I drink each day.

My haemoglobin results were also very low today at 84 (not quite at transfusion stage but close) and this may explain my lack of energy during the day.

I also dropped off a specimen for testing to check on my diarrhoea which has been reasonably constant for the past few weeks.  They will check for a virus or bacteria but itwill take up to a week to get the results.

After a review of the Cyclosporin I received a message from the hospital late in the afternoon that I could drop this dose again to 175mg rather than 200.  The team are obviously worried about my kidney function.

I also picked up some extra heavy duty sleeping tablets as I have not been sleeping well since coming out of hospital averaging around 4-5 hours a night which makes for a tough day following.

And rather than drop me back to 2 visits a week they are keeping up with 3 just to ensure I get sufficient fluids and that the magnesium levels are correct.

In other news over the weekend we had a visit fromLisa McSweeny, who had driven her daughter down from Sydney for college.  Lisa popped in for a cup of tea on Saturday afternoon.

And on Sunday we ventured out for our first social excursion to catch with friends Mike and Nicole Gilfedder at a lovely brunch hosted by Jeremy Twigg and partner Nes.  We also returned a bike we had borrowed from Jeremy when Claire was over at Xmas time.

Today’s visit to hospital was about getting more IV fluids including magnesium.  We both rode our bikes down to the hospital to ensure some early exercise on Melbourne’s 36 degree day.

Interestingly my magnesium levels are now back in the normal range of around 0.7 although this will vary considerably depending on the level of cyclosporin drug.

I met a new Registrar, Emma who went through the standard questions and asked about my general health.

In a nutshell I am feeling quite well with the exception of my ‘chemo brain’ which is severely restricting the capacity I  have to do anything during the day.  I am limited to very simple tasks such as colouring, jigsaw puzzles etc.  The days are long.

Emma checked in with the head consultant Amit Khot and his advice was to hold off on two doses of cyclosporin and then reduce it to 200mg per dose twice a day from 225mg  (originally it was 250mg/dose).  This should improve my kidney function, which as you know is a bit off with very high levels of creatinine.

The current creatinine measurement is around 175 and the doctors would like it to be below 150.  If it gets higher than 200 then they will probably want me to get back in to hospital for more constant IV fluids.  The extra IV fluids together with the reduced cyclosporin dose should help.

This is all a big balancing act as reducing the cyclosporin is likely to introduce some graft vs host disease (GVHD) which is desirable but has to be closely monitored and managed.  The GVHD is most likely to manifest as problems with my Gastro-intestinal tract (mouth ulcers, nausea, vomiting or diarrhoea) or an itchy skin rash. Stay tuned!

The other news from the day was that I still don’t have my results from the recent Bone Marrow Biopsy, which should be available on Friday.

Hard work getting IV fluids.

The weekend was pretty much straightforward with no medical complications and no visits to hospital required.

Jan and I managed to spend some time with Lachy looking at Motorbikes on Saturday as he is contemplating joining the ‘Dark side’.   It was fun to see what sort of bikes he is interested in with the Indian made “Royal Enfield” the front runner at this stage.

The Himalayan

The Classic

Sunday involved a big walk into town to buy a summer hat and a few other bits and pieces including a belt for Jan.

Monday was a big hospital day which was not entirely expected.  I had to have my first dose of tablets at 7.15am as the blood tests for Cyclosporin levels need to be done exactly 2 hours after taking the tablets.

We chose to walk to the hospital, which took about 45 minutes, for the blood tests at 9.30am. In the waiting room we caught up with some other patients including Tyrone from 7B who had made the same journey as myself.  Whilst they all had different stories to tell their message was the same – it takes time, don’t expect a miracle!

After a cup of tea it was off for the doctors appointment he went through some interesting facts:

1.  I am likely to feel low and without energy for quite some time – in fact possibly another 2 months.  This is  not good news but is par for the course.
2. I am likely to get graft vs host disease in some shape or form over the next 2 months which will show up as rashes, and perhaps diarrhoea, or other complications.
3. My graft is taking quite well which is indicated by the good platelet count that I have at the moment.
4. I needed some IV fluids as my creatinine level was again quite high a side effect of the high doses of cyclosporin I am taking and a top up of magnesium as the cyclosporin depletes magnesium as it is excreted from my body.

So the doctor made arrangements for me to get a top up of IV fluids which took about 2 hours. Luckily I had a TV screen in my room and watched the Super Bowl final which was hardly exciting but never the less somewhat interesting.

Following the IV infusion I had my new PICC dressing changed with took about 30 minutes and then my day at hospital was over at 3.00pm.

I walked home again (Jan had gone off to an appointment) and then took a well earned rest.

So for the foreseeable future it is hospital visits every second day and IV fluids on most visits to top up the missing magnesium.

I will keep you posted once or twice a week as things come to light.

Wednesday was my first visit back to hospital as an outpatient and this was for blood tests and to see a doctor.  All went well although the wait times at the hospital were something that I had almost forgotten about.

Thursday was a hospital free day spent at home with a few walks and catching up on some business matters, although with my Chemo brain at the moment I am certainly having trouble keeping concentration for more than 5  minutes or so.

The biggest issue I am having at present is lack of sleep.  My routine is completely upside down and I can remember when I first came out of hospital back in Sept it was much the same.  I struggle to get 4 hours sleep a night and on some only 2 or 3.   This is not good as it leaves me in a complete fog the next day without the energy to do much.

Friday’s visit to the hospital was for more blood tests and my Day 30 Post Transplant bone marrow biopsy,  which will see how well Tony’s Stem Cells have engrafted and if any leukemia cells are still present. The blood tests were out of the way early but as before there is a lot of waiting for the biopsy – about 1.5 hrs in fact.

This was a relatively painless operation with mild sedation and took about 30 minutes.

Following that I had another appointment with a doctor to check on the morning’s blood results (yes they can get them through very quickly – within 2 hours if needed).  We discussed the lack of sleep and he gave me a strategy with some sleeping tablets to see if I can change my sleep pattern. I am still on 3 hospital visits a week for the next week but hopefully will move to just two a week after that.

In the meantime I am keeping up with exercise each day, drinking two litres of water each day and taking my 44 tablets each day.  What a routine!

Monday was to be the day that I was to be discharged at least for afternoon leave but a few things happened that meant this could not be.  Firstly the Hickman line that had developed a hole had to be replaced was going to take up most of the day with operations.  The team chose not to replace the Hickman but rather change over to a PICC line. The PICC line is also a central catheter but runs from your tricep into the heart and is a slightly smaller tube.

It took about an hour to get the PICC line fitted fitted up.  This is done with only a local anaesthetic and they push the line about 40 cms into  the suitable vein.

But then I had to have the old Hickman line taken out.  This is simply done by an experienced nurse pulling the tube from your chest,  no anaesthetic just brute force! They then put a dressing on the hole.  The Hickman central line had been in my body for total of 5 months so had not done too badly.

So day leave was off the agenda, i was not set for full discharge on Tuesday 30th January.    This was after a month in hospital. and it felt very strange.

Emily from the Pharmacy spent and hour with us going through a small mountain of drugs that I would need to carefully consume each day. What has become clear is that the next 60 days are critical in the recovery process with visits to the hospital every second day for tests, checkups and top ups of blood products and Magnesium as required.

Walking out of hospital the first thing you notice is the strange smells.  Even the car park smelt great to me!

So once at home it was a matter of unpacking and settling in again,  I still don’t feel 100% and assume it will take a number of days for my body to adjust to my new life.