New trials

[Littleannies]

Hi all has any one on here had or waiting for any treatment or trials at the London (guys cancer clinic) if so I would like to here some stories about your visits and how you were felt with. I only ask this as I went for a appointment back in November 2016 to see a consultant about a trail called (immune) sorry can't remember the correct name, staff were lovely and friendly the consultant said to me that he wanted to get on with this trial within the next couple of weeks but these weeks have turned into months, I know things take time but time is definitely not what I have. Has anyone else experienced these long delays as it's really not fair on the patients, I'm having to make phone calls to my own consultant who is very shocked at all the delays any way I've got the ball rolling and things seem to going the way it should be still got to wait a couple of weeks before I go back to London to find out if I can go on this trail I hope I can as I've waited so long for it now just feels like they are keeping me hanging.

[RoyCastleHelpline Partner Ask the Nurse Roy Castle]

HI Littleannies

There can be a number of reasons why there is a delay in being received into clinical trials: the research team may be waiting for budget or final Ethics approval, or it could be there is an amendment to the trial. This is both frustrating for the research team and especially the participant. Other reasons may be the inclusion or exclusion criteria has been reviewed, or the time window for recruitment is being extended but needs approval.

Generally the research team are passionate about their trials and very keen to commence trials once approval has been granted and welcome participants as soon as they can.

It is understandable the frustration on the time scale for anyone waiting to be taken into a trial.

As you probably know their contact numbers will be on the last pages of your patient information sheet of the trial, you could discuss this with them.

Good luck with the trial and hope you will be received into this.

If you wish to discuss anything you can call us on 0800 358 7200

All the best

The Roy Castle Support Team

[Alexandra_JGW]

I would suggest approaching the Sarah Cannon unit at Harley Street. If you are referred via the NHS with scans, reports, treatments etc they can look into trials for you. They also undertake gene testing and send the bloods off to be checked for a defected gene. My advise is do your research and then if I still have the information I will forward this on to you. The doctor is so on point with everything he was amazing it is just such a shame a trial come up and J was to poorly to undergo the treatment.