No Clinical Trial available for me

[Pryced]

Following on from my last post about waiting for an appointment, sadly I have heard from my oncologist who has had a letter from The Marsden to say there is not a clinical trial I can try at the moment. With no standard treatment being offered either I’ve been advised that I can be referred to the Drug Development Unit, has anyone had any experience they can pass on to me? I was told they can use drugs in their very early stages and have not always been used on humans before. I’m scared at the prospect of this. At the moment I’m tired but well and still working but I haven’t had any treatment since end of Feb so not sure how long it will be until I start to get symptoms.

[Yoshbosh]

Hello,

I’m sorry there weren’t any mainstream trials available for you, but if it is any consolation, I was cared for by the DDU when I was on the ONX trial, and I wouldn’t hesitate to go back to them again if there was another suitable trial that came up. They are typically running Phase 1/2 trials for drugs that show promise but don’t have the same amount of data behind them. I’ve already pre-consented for a couple of trials with them, but am on chemo at the moment, so it is more of a speculative thing.

My advice would be to meet with them and see what kinds of things they might be able to offer you, ask lots of questions about the trials etc. Once you know what’s available, you can decide how comfortable you feel.

Vicki x

[Pryced in reply to Yoshbosh]

Thank you Vicki, that’s what I’m thinking, no harm in finding out, and tbh I’ve not much choice really, I’m not ready to throw in the towel yet!

[Yoshbosh in reply to Pryced]

The doctors in the team are all fairly senior and you’ll see a few of them over the course of your meetings with them. If you go for a trial, you’ll have one doctor follow your case and you see them every time you are in clinic, so you build up a good rapport very quickly, and the others on the team get to know you too. The nursing staff on the team are incredible too - I was an inpatient for a week and the level of care and compassion was even better than anything else I have experienced (and I’m a huge fan of nursing staff, generally!).

[Lyndy]

That’s not the news you wanted but I agree with Vicki, go and meet them- you can say no if you don’t feel comfortable. I keep thinking about the evidence I read about those on trials doing better overall- not necessarily because the drugs worked but because they were so closely monitored xx

[Trathi]

Sorry you find yourself in this situation. I have not had any experience of the DDU unit however, I would agree totally with this YoshBosh about going and meeting them and asking any questions you may have and about what is available, you can make your own mind up about whether you want to try anything,.Sending lots of love 💕 hugs 🤗 and positive thoughts your way xxxx

[CharlotteSo_UK]

Morning. My Mum is at the DDU- she was referred there in August 2017 when Letrozole and then Tamoxifen stopped working for her. Mum was at the Marsden in Fulham at the time and her consultant was really keen for mum to start a trial. We were unsure as mum still had other treatment options available (further chemo or anastrazole) but went to meet the team at the DDU anyway. They explained to mum that the trials are phase 1/2 and are unknown in terms of effectiveness which made us doubt the process even more. However, Mum did opt for a trial in the end, there wasn’t anything to lose as we could have gone back to our original consultant at any time if we wanted. I posted only on Tuesday an update on that trial - FRAME study - and have posted on here regular (ish) updates throughout

Our experience of the DDU has been excellent - obviously helped by the results - and I wouldn’t hesitate in saying that it’s worth just meeting with them and seeing what you think. X

[Lindaura]

Thank goodness that you have received such good advice.

My only other advice would be to seek a second opinion.

Or, ask for the Rotterdam Tegime,

Which is harsh, but designed for Platinum Resistant disease.

Best of luck,

Laura

[Pryced]

Thank you everyone for the solid advice, I feel more positive especially after reading about Charlottes mum and her experience. I’ll ask for the referral on Tuesday and go and talk it through with them x

[CharlotteSo_UK in reply to Pryced]

Please let us know how you get on. I know my mum has been very fortunate (no irony intended there!) to be on the trial she is on. You may decide it’s not for you but it can’t do any harm in just exploring other options. Wish you all the best xx

[bluepeterella]

Another option to look at might be the Care Oncology Clinic which is private, but is run as a trial using repurposed, inexpensive drugs. The protocol is designed to be used alongside mainstream chemo but you can ask them for advice about whether it's suitable for you before committing yourself or any money to it.

[Cropcrop]

There’s so much brilliant advice for you here, I have nothing further to add other than to say it really can’t hurt to go along to the DDU and see what they have to offer, make sure you are fully armed with all the information you need to make a decision and I just wanted to wish you well and send best wishes for whatever you decide to do ❤️Xx Jane