July – ECP underway

We moved back to Melbourne in late June for the Extra Corporeal Photopheresis (ECP) treatment I mentioned in my last blog.  In many ways this was a relief but the recent COVID flare up in Melbourne has added another dimension to how we get about and live life in these strange times.  Lockdown in Melbourne is certainly different to lockdown on the farm in Tassie!

A port had to be inserted in my chest under my skin for regular access and this took a week to heal.  Treatment started in the first week of July and will continue twice a week for two months before being slowed down to weekly and then fortnightly, monthly etc.   It could go on for years.

The Port that was inserted took a week to heal and was a pretty solid operation.

It takes me back to mid 2018 when I was going into Peter Mac twice weekly for blood transfusions.  Luckily Jan is still happy to help out and comes along each day to support me.  We both agreed when we got married that we would support each other ‘…….in sickness and in health’…..  – not thinking it would actually come to this!  I certainly have great respect and admiration for my wife who has been happy to support me through this long and trying time.

Amit Khot and his GVHD team run by Clinical nurse Paige Marino and Alex Rivalland have been working with this treatment for a number of years and say it is highly successful although it takes ‘time’ to see results.  Luckily I have plenty of time and am looking forward to seeing a response.

The treatment is straight forward, I am ‘hooked’ up to the Apheresis machine (blood extraction and processing) for about 2.5-3 hrs.  1.5 litres of blood is extracted, the red cells are spun off and returned and the white cells are injected with a drug (methoxsalen) which makes the T Lymphocyte cells to be susceptible to UV radiation. The white blood cells are then exposed to UV radiation before being transferred back to my body dead T Lymphocytes and all.  The idea is that my immune system sees all the dead T Cells and ‘encourages’  my bone marrow to reduce its production  of T Cells in an effort not to continually attack my skin.

There are four Aphoresis machines in Peter Mac and three at PAs in Sydney to service the population of Australia and New Zealand.  They are used for a range of treatments involving immune response/rejections including ‘hard organ’ transplants such as heart and lung transplant rejections.

Jess, the leader of the 3B Outpatients clinic was the nurse who oversaw the collection of my brother, Tony’s Stem Cells back in January 2018 and it was a delight to meet up with her again.

She was kind enough to lend me a copy of a book  written by one of their Patients, Josh Komen,  who still travels from New Zealand four years after first receiving ECP treatment.  It made a huge difference to his life and his book is certainly inspiring. In  “The wind at my back” Josh describes his long and successful but very painful and challenging battle with AML over many years.

During one treatment we met a couple from Werribee who had been coming to Peter Mac for over a year for his ECP treatment.  Ray’s condition was much worse than mine with a very stiff body and legs and unfortunately he was confined to a wheel chair a lot of the time because of his mobility issues.  The clinical team had been telling me that my condition was certainly one of the ‘milder’ cases which I had found hard to believe until I met Ray.  There is always someone worse off than you!

Last week I attended a Telehealth Dermatology Clinic seeking answers to my many questions.  In particular will the ECP treatment  reverse or soften my skin which has become quite hard.  Harini (the dermatology registrar) spent quite a bit of time explaining  the GVHD process on the skin and its various layers and indicated that the
hardening of the skin  was due to the Thickening Collagen Bundles between the Dermis and Epidermis layers.  For some patients  the ECP is very effective in softening this condition and for others there is not much change.  Let’s hope I’m in the first group!

skinFor the majority of patients the ECP combined with immuno-suppressant drugs is effective at halting the spread of the condition.

I am currently using ultra-sound treatment on the effected areas although Amit tells me there is absolutely no medical evidence that will help but if I perceive a benefit it is unlikely to be doing any damage so go ahead.  Of course the physiotherapists out there (including my mother) would swear this treatment is effective in a range of situations.

I am working with a physiotherapist, Kennedy Lay, for over two years now and he has encouraged me to implement a set of stretching exercises that take over an hour each morning.  This is certainly helping.  (Kennedy now in his 30s has recently taken up a cadetship with Qantas at their new training facility at Toowoomba but is happy to support me through Telehealth).

I am having blood tests on a weekly basis and all counts are generally in the normal range (although the CMV – Cytomeglavirus) started to climb to worrying levels.  This was treated with a new drug Valganciclovir and is back under control now.

At the moment I am on a total of around 36 tablets a day with 16 different drugs. I have  returned to my old mantra of “one day at a time” as this episode has taken me back approximately two years in my recovery.

After my two year work up I was excited to think that I was through the worst of the complications and all indications looked good, but as Amit previously said “we don’t know what might show up with the GVHD and after all we are dealing with biology”.

For me the toughest thing is dealing with the setback, especially the lack of strength and fatigue, knowing  that it is again a long way back to good health.  However knowing I have been there before I am up for the challenge.  It is just a matter of time.

Type II Diabetes 

One of the major impacts  of the many drugs I am currently taking is high blood glucose levels.  Amit has been monitoring this over the last few months and referred me to the Diabetes team who confirmed that I was now considered to be a Type II diabetic.  They have assured me it is most likely related to the drug load and will hopefully return to normal once the drugs are reduced, but it may be that the condition is with me for the long run.

The normal range for blood sugars is around 4-6 mmol/l on a fasting test and between 6-10 mmol/l during the day. My levels are well above that at 12-16 during  the day.  The Diabetes team didn’t seem to be overly worried saying above 16 is of concern and when the levels rise over 20 it is considered to be very serious.

So I am now testing 4 times a day (with a home test kit) and self injecting insulin once a day.

Blood Glucose tests are now a regular feature of my day

Victoria Watson, wife of good friend James who was treated for ALL at the same time as me delivered a food parcel during the COVID lockdown in Melbourne. James has made a full recovery and no longer takes medication. He is doing so well!

Keep well and keep safe!