Month: February 2018

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!