Third Re-induction Cycle

Earlier this week I attended my consultant's clinic and received the good news that my myeloma is responding to treatment.  As I started the cycle number 1, my paraprotein count was 13.  At the end of the cycle the count had reduced to 8.  Because the result of paraprotein testing is not known for about two weeks, I won't know the result of cycle 2 until my next appointment.  The news is good and makes the various side-effects worth tolerating. Importantly, I was prescribed for cycle number 3.

I continue with my usual cheerful demeanour and decided I needed a project to keep me inspired (and perhaps a little busy).

My new toy

A long time ago I owned a Mark 1 (Frog-eyed) Sprite and enjoyed driving it around the country roads of my then home in Yorkshire. Much later I had my first sight of a Mazda MX5 and wondered if perhaps I might one day own one.  This is a 2003 model with a 1840 cc engine developing 146 BHP.  It does have a number of jobs which need attention and I relish the opportunity to make the necessary improvements.

Our family has the habit of applying names to inanimate objects and this would be no exception.  I decided that, as I hope the MX5 will be a trusted servant, it should take the name of a butler.  I decided on the name of Brabinger who was butler to Audrey Fforbes-Hamilton in the TV series "To the Manor Born".  This purchase can perhaps be seen as a sign of my confidence in my future.  Its care and maintenance will certainly keep me busy!

At a very enjoyable social event last evening it was suggested that I have a "glass half full" attitude rather than "glass half empty".  I corrected the suggestion by pointing out that as an engineer I considered the glass to be the wrong size!

Keep well

Stephen

Second Re-induction Cycle

Last week I attended my consultant's clinic and, everything being OK, I was prescribed for the second re-induction cycle.  Accordingly I came home with fresh stocks of Ixazomib, Dexamethasone  and Thalidomide.  Also in the pack were the various medications intended to control side effects.

The first cycle was characterised by recognisable side effects.  The Dexamethason, which is taken on days 1,8, 15 and 22 resulted in insomnia for at least one night each.  The Thalidomide, which is taken each day, seems to be the cause of what I will describe as light-headedness.  I have been taking this at night and now propose to take it earlier in the evening to try to bring the effect forward.

Overall I seem to have less energy and I'm more prone to needing an afternoon nap.  And all this now without any alcohol !  What drives me is the recognition that the last clinical trial resulted in 6 years of being relatively treatment free.  I can only hope that investing some effort now will produce a similar effect.

Last month the family came together for a Ken (barbecue) put on by our elder son to celebrate our younger son's birthday.  The weather was, of course, fantastic and it was so good to get everyone together and so happy.

The Royal Air Force is 100 years old this year.  I recently had the great pleasure to attend the Cosford Airshow with a very good friend and my younger son.  Today the centenary has been marked with a service in Westminster Abbey, the presentation of a new colour, and the largest flypast since the second world war.  It came as something of a shock to me to realise that having served for 23 years, I had been associated for almost a quarter of the life of the service.  I thought it only right to show my 'colours' to my neighbours this week by flying an RAF Ensign !

It occurs to me that the Royal Air Force motto: Per Ardua ad Astra (which variously translates as "Through struggle or adversity to the stars") can also be applied to myeloma where investment in treatment can result in a positive outcome.  So....

Per Ardua ad Astra

Keep well

Stephen

OnTrial ....

.... and not in a legal sense !

Yesterday, I attended my consultant's clinic and was prescribed for my new clinical trial: Myeloma XII.  I thus returned home with a carrier bag containing multiple medications.  Only three (Ixazomib, Thalidomide, and Dexamethasone) are the actual trial drugs.  All the others are to minimise side effects.  It was clear that I needed to take some drugs in the morning and Thalidomide in particular at night.

It might seem strange but I am content to now be on the trial.  It is a recognition that the myeloma has relapsed.  It means regular (monthly) clinic appointments, no more qualification tests, and above all progress.  Over the last few weeks I have been subject to so many tests.  Many of these are very expensive and require considerable expertise.  I am indebted to the NHS and to all the personnel with whom I have come into contact with.

Health is the greatest gift,

contentment the greatest wealth....

Buddha

Keep well

Stephen

So Many Tests

In my last post I mentioned the intention that I would be recruited onto the Myeloma XII clinical trial.  This trial has especially stringent eligibility criteria.  Accordingly, recent weeks have been dominated with tests.  The first was the aforementioned PET CT scan (more later), then a echocardiogram (an ultrasound check of heart function).  Next came a lung volume and peak flow test.  Both heart and lung reputedly good!  Then bone marrow biopsy, multiple blood samples and urine sample all of which measure my condition on recruitment.  I'm now feeling somewhat "prodded"!

Perhaps most importantly I have now been signed up for the trial.  I think I need to qualify that by saying that this could depend of the outcome of my bronchoscopy.

I previously mentioned that the PET CT scan had identified "something" in a lung.  Accordingly I received a further chest X-ray but its result was somewhat inconclusive.  Accordingly I found myself subject to a bronchoscopy.  This requires that a tube with light and camera is fed through my nose and into my lungs thus allowing a thorough visual check and possible biopsies.  My nostril and throat were anaesthetised and I was also given a short acting anaesthetic.  The latter was so effective that I knew nothing of the procedure and don't know what was found.  I will have to wait to be told.  Meanwhile I had a very sore nose and throat which resolved a few hours later.

Update 31st April - Received letter from respiratory consultant.  The bronchoscopy did not identify anything sinister and no biopsies were taken.  Wonderful news and hopefully I can now proceed with Myeloma XII trial.

It is perhaps worth explaining, from a patient's point-of-view, why I believe in clinical trials.  Whilst there are undoubtedly altruistic considerations: participating may ultimately help other patients, there are very strong "selfish" reasons.  The first consideration is whether you have confidence in the "standard" treatment(s).  These were typically developed many years ago and will employ drugs that were available at that time.  A trial potentially offers access to more modern drugs.  Trials are divided into phases.  In Phase 1 trials, the toxicity, tolerance and side effects of a drug are studied.  In Phase 2 further studies about side effects are studied.  In Phase 3, a much larger group of patients are involved and the aim is typically to compare the new drug with the traditional ones.  Myeloma XII is a Phase 3 trial.  It gives me access to a new drug called Ixazomib (you try to say it!).  All participants receive it during initial treatment lasting 4 to 6 cycles (of 28 days each).  Depending on randomisation I will then either have standard high dose therapy and stem cell transplant, or one augmented with Ixazomib.  I will then be subject to further randomisation to decide whether I receive maintenance treatment with yet more Ixazomib.  Inevitably trials like this require greater supervision by a consultant.  This is needed to monitor response and any side effects.  I personally prefer this extra supervision which for this trial requires monthly clinic appointments.

Now onto a rather more pleasurable subject.  Since my last post, Margaret and I have been up to London.  Our itinerary included a trip down the Thames and riding on the cable car, visiting the Imperial War Museum, and going to the Royal Albert Hall to watch the 75th Anniversary screening of the Dambusters film. But by far the highlight of our trip was being able to attend the Royal Garden Party at Buckingham Palace.

Well scrubbed to attend Buckingham Palace

We were sponsored due to my involvement with the Magistrates Association, hence my lapel badge.  I decided, however to wear my RAF tie in recognition of the Force's 100th anniversary this year.  We were treated to views of the HM The Queen, HRH Prince Andrew, and HRH Prince Edward.  It was truly an honour to be able to walk through the palace and into the extensive gardens.  The weather was excellent as was the catering.  This was undoubtedly one of life's memorable experiences.

The person who has lived the most is not the one with the most years

but the one with the richest experiences

Jean-Jacques Rousseau

Keep well

Stephen