Trials - my experience
If one can find a positive in leukaemia it is that so much progress has been made over the last two decades in improving outcomes and survival. But, treatment remains unpleasant, leads to a number of side effects, and has not yet achieved a world where a return to a long and high quality healthy life can be delivered for everyone. How can we improve this?
A recent post on Leukaemia and Lymphoma’s Facebook page reminded me of the great work that they are doing, so I thought I would write....
Why did I join?
My reasons for joining the trial were that I felt we owed it to those who come after us to try and ensure that something is learned from our experience. It made me feel positive, and that I was doing something, at a time when I had very little control over anything. It also meant that I would be monitored by a cutting edge team working around the UK, and benefit from the very latest thinking on treatment.
What was the trial?
Trials have played a massive part in getting us to where we are today. In the UK as nearly everyone is treated by the NHS, and in a very equal way, we have an ideal starting point for trials. Soon after my diagnosis I was offered, and elected to be part of, the AML17 Trial.
A number of key areas formed the trial:
My first trial was of whether a TENS pain relief machine is useful during bone marrow biopsies. On this it turned out that I had the placebo, which made this a testing experience (ouch), if I was doing that again I would ask for gas, which I had on future biopsies and made it almost pleasurable!
Having got the biopsy samples these were used for cytogenetics, the results of which were not known until midway in the first chemo cycle, but enabled one to be defined in terms of risk. This then led into the protocol for treatment, with everyone receiving induction chemo, and then a refined treatment for people based on risk.
I came out with two positive cytogenetic markers, which was good news. As a result I was then randomised between 3 and 4 cycles of chemo. The concept here is that people used to receive 5 or more cycles of chemo, this was then reduced to 4, as more is not always better. We are now looking to see if a further reduction is also an improvement – obviously not having to undergo an extra cycle is likely to be a good thing, the question being is there more risk of relapse by doing so. This worried me a lot at the time, as I just wanted the leukaemia gone, but I think this is an important trial and elected to stay in it.
Also as part of the cytogenetics it was tested whether Mylotarg, designed to attack the leukaemia cells themselves, and which was likely to be beneficial to my Leukaemia, affected outcomes. Another trial on this drug was previously stopped in the US, my team were very open about this, and I was able to understand that other issues may have affected the US trial. Obviously UK doctors would not even consider testing this if they felt the risks were high, so I went ahead, but was closely monitored. I did feel terrible the night that I had the treatment, massive pain in my legs and chills, but I think it was doing its work and preferentially destroying the leukaemia cells.
The final trial that I was in was of ongoing bone marrow sampling aimed at picking up changes that may be early predictors of recurrence. I got the placebo here, which was no bone marrow sampling but just filling in a quality of life survey, so that the results could be compared with the questionnaires filled in by the bone marrow cohort.
Was it positive?
In a word, yes. I have been left feeling that I have received the best care possible given the state of knowledge today. On top of this I have helped advance knowledge. After such a major illness I have been changed, but can be thankful that I am healthy, and relatively side effect free, only 7 months after finishing treatment.
What would I say to others?
To the research scientists - please keep up the fantastic research, you are saving lives and delivering hope, well done and thank you from me and my family for making a difference.
If you are a patient – consider being part of a trial if offered the chance, but make sure you fully understand what you are being part of and why (you will be told fully, but it is a lot to take in in the early stages). Let’s beat this!