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

Thank You NHS

Since my last post life has been somewhat busy, and the last two days have been especially so.

Yesterday I attended my consultant's clinic.  Surprisingly, despite the pain in my sternum, my on-the-day blood test results showed no deterioration.  My paraprotein test (taken in April) actually showed a slight reduction from 13 to 11 !  

My consultant had been ready to recruit me onto the Myeloma XII clinical trial.  She had the documents ready and had booked me a bone marrow biopsy.  Reading the report from my PET CT scan (18th April) she had to re-think.  The scan had identified myeloma activity in my sternum.  It had confirmed historic damages to my vertebrae.  It had also found "something" in one of my lungs.  The report author proposed two options.  Firstly it could be an infection which would simply need treatment with antibiotic. Alternatively it could be cancerous and would require investigation.  My consultant wisely took both courses.  She prescribed antibiotic and is referring me to a respiratory consultant possibly requiring a bronchoscopy.  Realising that this will delay recruitment to the trial, she contacted the radiotherapy lead doctor.  Later, my chest was marked up and today I was given a single X-ray fraction of radiotherapy.  This will hopefully relieve some of the pain and reduce the risk of bone damage.  I have also been put back onto monthly doses of Zometa (starting on Friday!) which is an infusion to further limit bone damage.  I now await the referral to the respiratory consultant and the prospect of a bronchoscopy - oh joy !

It was truly gratifying to see the positive involvement of so many people who are caring for me.  Thank heavens for the NHS.

Margaret and I had our all-too-brief visit to Belgium.  We travelled to London by train staying overnight before boarding the Eurostar to Lille.  From there a coach took us across the (non-existing) border into Belgium and to our hotel in Bruges.  We were to stay there, just off the main square, for three nights.  Belgium is famous for superb food, a huge range of craft beers, and chocolate.  I did not sample the chocolate !

The next day we had a walking tour of this very beautiful city with its magnificent architecture and quaint streets.  It was, of course, a duty to be shown around a local brewery ! The day ended with a boat trip on Bruges' canal system taking in views of yet more beautiful scenes.

On the Friday the tour concentrated on World War 1.  First we were taken to see the Tyne Cot Cemetery.  This is the largest of the Commonwealth War Grave Commission's cemeteries with almost 12,000 graves and nearly 35,000 names of the missing.  It was truly extraordinary to look at the surrounding countryside where nothing is over 100 years old, having been destroyed during World War 1.  The scene of so many graves was deeply moving and leaves an indelible memory.  We were taken to Ypres where the town had been utterly destroyed but has since been re-built.  The Belgians saw fit to re-build their history rather than replace it with concrete monstrosities.  Significant buildings were the Cathedral and the Cloth Hall; both beautifully restored.  We were able to visit the Menin Gate where the names over  54,000 missing are inscribed.  Sadly our schedule did not include attendance of the evening Last Post ceremony.  The last visit of the day was to the Pashandaele Memorial Museum where we experienced recreated dugouts and trenches and viewed so many war artifacts.

The Menin Gate in Ypres

Our last day started with a free morning when I was able to visit the Notre Dame cathedral and view  Michelangelo's Madonna and Child which is carved in pure white marble.  

Madonna and Child (copyright visit-bruges.be)

The time then came to board our coach for the trip back to Lille, then the Eurostar to London and finally train back home.

Once home I was treated to the fact that our younger son had been hard at work having undertaken a considerable amount of gardening.  Thank you so very much, Chris.

Life is what happens when you are busy making other plans

John Lennon

Keep well

Stephen