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.
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| Well scrubbed to attend Buckingham Palace |
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
