What have you never asked, but always wanted to know about…Clinical Trials

What have you never asked, but always wanted to know about…Clinical Trials

Today the Clinical Trials Support Nurses will be doing a mini ‘takeover’ on the forum (normal service will continue as usual). We’ll be about all day to answer your questions.

We’ll be posting throughout the day, but we’d love you to let us know if you have any questions for our nurses, whether you’re considering a trial, or if you’re currently taking part in one or have done so previously.

We’d also welcome those who have taken part in a trial in the past to share their story with our community.

Feel free to share [here](https://forum.bloodcancer.org.uk/t/what-have-you-never-asked-but-This text will be hiddenalways-wanted-to-know-about-clinical-trials/7873) :point_down:


Hi @Elizabeth_BloodCancerUK,

I’d like to post a ‘shout out’ for your excellent Clinical Trials specialist nurse service. :clap:

When I relapsed for the second time with multiple myeloma, I asked my consultant what might happen next. He replied ‘maybe there’s a trial you could go on…’ and that’s all he said. This initially filled me with some disquiet because I had thought there were more lines of treatment ahead but that he was now saying I’d reached the end. This showed my complete ignorance about the clinical trials system.

Thanks to this forum, someone drew my attention to the support that you offer for finding out more about clinical trials. Not only was I offered an hour’s discussion on Zoom with a very helpful CNS but the nurse then followed up with emails over quite a period of time to see how I was doing. At a time of ‘radio silence’ in the NHS where I just couldn’t ascertain what was going to happen next, this was the most valuable and supportive help that was offered to me.

The trials nurse explained that there is a difference between Phase 1, 2 and 3 trials with the potential risks to patients being perhaps greater at Phase 1 when the drug or treatment is in its earliest stages of being studied whereas by Phase 3 a lot of work has already been done and the trials are more about fine tuning the doses or comparing one drug with another. (I hope I’ve got that right).

Following my conversation with the nurse and the trial searches that she undertook on my behalf, I became really motivated to take part in a a trial. It can be a way of giving something back to the blood cancer community after all the treatment I have benefitted from so far, as well as an an opportunity to access some treatment that may be better than what is currently available on the NHS.

Unfortunately it transpired that I did not meet the inclusion criteria for any of the trials in the radius of my local area. Each trial stipulates that you must already be refractory to certain drugs or you must not have been treated with certain drugs: I seemed to fall between two stools and so I was ruled out for now BUT I feel heartened to think that when I do become refractory to my current treatment, there could be the option of taking part in a clinical trial in the future.

Thank you @BloodCancerUK for providing such a good service. I wasn’t sure if I could name the lovely nurse who helped me so much or not but she will know who she is :blush:


Hello @Coastgirl

Firstly, thank you for taking the time to share your story with others. It’s so lovely to hear about your experience with our trials support service and how it benefitted you.

You’ve done a wonderful job describing the different phases of clinical trials in more detail. The only thing I might say is that for Phase 1 trials, rather than a higher chance of risk being involved, it’s more so that less is known about the drug or intervention being investigated. That means that these studies (where a drug is being given for example) usually only involve small numbers of patients, and the focus is on ensuring that the drug is safe to be given. Often, but not always, within phase 1 studies, the drug is given in a small dose to the first group of patients while closely monitoring for side effects, and then the dose is then increased over time. So really, the main aim of phase 1 trials is to understand more about the ideal dose of the drug and its side effects. Later phase trials as you say may move towards comparing this new treatment to the current best available treatment. So it may be that people might not benefit as much from early phase trials, but any risks to the patient are monitored closely as safety is paramount in all trials. For those that might like to learn more, you can read about clinical trials and their various phases on the Cancer Research UK web pages (Phases of clinical trials | Cancer Research UK). It might also be helpful for others to read about the potential pros, or cons to partaking in clinical trials. https://www.cancerresearchuk.org/about-cancer/find-a-clinical-trial/what-you-should-be-told-about-a-clinical-trial/advantages-and-drawbacks

Again- thank you for sharing your experience with others, and know we are here to support you again in the future if ever you were to need it.

Take care,
Clinical Trials Support Nurse

#clinical-trials #research #trials