From time to time, I receive email updates from Myeloma UK, covering a variety of topics. To be honest, usually I take a brief glance and delete them without further ado. I tend to leave the medical stuff to the medics; I have no doubt that they’ll give me all the information I’ll need to make decisions about treatment when the time arises. While it works for some, researching about treatment in advance of needing it isn’t particularly useful to me. I’d rather spend my limited attention span, time and energy on other activities.
I’ve just received an update today and thought it might be useful reading for other myeloma patients and for those of my supporters who have been quick to assure me at various times that there is always research being done and new drugs and treatments coming along all the time.
In fact, I understand that myeloma is an area of exciting, innovative research and novel drug development. Today’s email shows this most emphatically, with a host of new clinical trials…
CLINICAL TRIAL NETWORK
Clinical Trial Network expansion
2014 will be a big year for our Clinical Trial Network (CTN), which is expanding from 8 to 27 hospitals across the UK.
Myeloma UK established the CTN in 2009 with a simple, but highly ambitious, objective: to transform the myeloma research paradigm in the UK by funding and coordinating a targeted and prioritised portfolio of cutting-edge clinical trials and to ensure access to the most promising myeloma drugs in development.
In 2013, MUK one, the first trial in the CTN series, was set up in half the time of a standard clinical trial. Recruitment completed ahead of target and the results from the trial look set to influence clinical practice across the UK and abroad.
Clinical trials would not be possible without the participation of myeloma patients. Thank you to all patients who are taking part in Myeloma UK CTN trials and other research trials across the UK. You are making a huge contribution to improving future treatment and care.
If you or someone you know are interested in taking part in a trial, or to find out more, visit our website. We will keep you updated in the year ahead as new CTN hospitals come on stream.
Other CTN trials
MUK three will evaluate new drugs CHR3996 and tosedostat in combination for relapsed and/or refractory myeloma patients.
MUK four looks at a new drug called vorinostat which is expected to add to the effectiveness of the Velcade® and dexamethasone treatment combination in relapsed and/or refractory myeloma patients.
MUK five aims to find out if a Kyprolis® treatment combination is better than the standard Velcade treatment combination that patients normally receive after their first relapse.
MUK six examines new treatment panobinostat, which could add to the effectiveness of the standard Velcade, thalidomide and dexamethasone (VTD) combination in relapsed and/or refractory patients.
Keep up-to-date with CTN trials by looking on our website.
This is encouraging as although in a few cases, having an allogeneic stem cell transplant may be curative, mostly, like all other treatments, it just gives some remission time. Whether that’s months or years is anyone’s guess.
I have come to terms that living with myeloma will be a case of periods of remission, interspersed with relapses and further treatment, hopefully leading to remission again. As I understand it, these periods of remission are likely to become shorter each time, until they run out of options that work.
I have just passed the 20-month post-allo transplant point (16 January) and so far my current issues are Graft versus Host Disease, rather than the myeloma, which is inactive, i.e. I remain in remission.
However, if and when myeloma takes up activity again, it’s good to know that there are a number of new treatments awaiting me, complete no doubt, with risks and side effects. But we shall worry about those further down the line. And seeing the variety of options is heartening.
Oh by the way, today is my three-year anniversary of being admitted to hospital for treatment of hypercalcaemia, which led to the myeloma diagnosis three days later. Happy anniversary! I’m still here! 😉👏💃