Has anyone participated in a Phase 1 trial?

[Lucidalil]

I Am considering participating in a phase 1 trial and am wondering if any of you lovely people on here have experience of these?

I do have a couple of other regular treatments to try if I don’t meet criteria but thought I would see what is offered.

I have 3c high grade serous ovarian cancer (diagnosed April 2013) and am BRCA 1

After initial debulking and chemo I had 2.5 years Ned (due to being in a 2 year olaparib trial I think) . Since then I have had several tumours shrinking back then growing again , staying stable then on the move again. I have been on phase 2 and 3 trials before but never been on a phase one trial......

I am in my mid fifties still in relatively good health and humour😁

Carolyn x

[Katmal-UK]

Hi Carolyn. I have participated in 3no trials but none phase 1 . Do you mind me asking, were you on Solo1 for Olaparib? Kathy x

[Lucidalil in reply to Katmal-UK]

Hi Kathy,

I was on a Solo trial but can’t remember which No lol. Currently houseitting so don’t have access to my hospital info to check at the moment.

I did a 2 year trial 2013 to 2015 which I think was 2 arm so included a placebo, I did have a few side effects at the time so suspected i was on the real drug . But I was told when I went on the Octova trial a couple of years ago that I had definitely been on the olaparib.

carolyn x

[Katmal-UK in reply to Lucidalil]

Hi

That sounds like SOLO 1. I'm on SOLO2 which I started in January 2014 and instead of stopping after 2 years the taking of the Olaparib/Placebo continues until recurrence. I'm on a double blind trial. Even my Oncologist isn't told if I am on it but he says 100% I am due to various notable side effects so all indications are that I am on Olaparib and have been for 5 years 8 months now. I wish you well xx Kathy xx

[Lucidalil in reply to Katmal-UK]

Hi Kathy,

I am sure mine was a double blind as onc and research nurses didn’t know either when I was on the trial, we all guessed due to a few side effects I started getting.

I was unblinded when I started the octova trial as they had to know if I had been on olaparib before as that was the second part of that trial.

I am so pleased that it is still working for you 😁

Carolyn xx

[Lucidalil in reply to Lucidalil]

I was hoping to get on a new immunotherapy trial but my tumours are too close to bowel and they are worried about bowel wall erosion so it’s a no for me on that one hence the phase 1 trials

Carolyn xx

[Lucidalil in reply to Katmal-UK]

Hi Kathy,

My trial was the SOLO 1 phase 3, received a letter from the hospital yesterday and my past treatments are listed on them.

Carolyn 😁

[Lyndy]

Having looked into trials but not been on one so far... I thought the level of detail they give you is really helpful. You have to give informed consent, so you could put yourself forward on the basis that you will get all the information and with the proviso that you won’t take part unless you are completely happy with it.

It is more risky but only you can decide if the risk outweighs the possible benefit. Keep us posted! xx

[Lucidalil in reply to Lyndy]

Hi Lundy,

I have on several trials before but they have been phase 2 or 3, i did well on them and the bonus being you are closely monitored.

I have never been on a phase 1 before which are being tested on humans for the first time but am up for it. I see the trials as a way of giving back to the people who have kept me going. As both my daughters also carry the same Brca 1 gene it may also help them in the future 😁

[Di16]

Tried to get on a phase 1trial, but didn't get on it as that particular trial TAXTORK used a drug that can raise blood sugar as a side effect, and as I'm diabetic, they checked my blood sugar and it was already slightly too high. But they may consider me for a different trial in the future. Di

[Lucidalil in reply to Di16]

Hi Di, that’s a shame you didn’t get on it, but there are trials coming up constantly so I am sure you will get an offer of something else.

I know how you feel as there were 2 excellent trials I hoped to get on but couldn’t due to the position of my tumours.

Apart from the obvious I am in good health so hope to get on something.

I have an appointment next Friday and will have initial tests to check my suitability .

I will eat you know what happens 😁

Carolyn x

[Neona]

I am on a phase one trial called Patriot. I started in December 2017 so have been on it for 20 months now and have been stable so far. My preferred choice was a phase one trial as you are normally guaranteed to get the trial drug. I travel from Cornwall to the UCLH Research Facility every fortnight and am very closely monitored. The only problems have been related to kidney damage from my original frontline chemotherapy which did not work for me.

[Lucidalil in reply to Neona]

Wow that is some travelling to UCLH, how did you get on the trial from so far away?

It is good to know you are guaranteed to get the drug as I could put bets on that I would always get the baseline or placebo on the phase 2 and 3 trials I have been on.

I am so pleased to hear that this trial is working for you 😊

Carolyn

[Neona in reply to Lucidalil]

I knew I’d just get the chemo on the phase 2 trial I was offered and a lady on the facebook group recommended an oncologist at the London Clinic. I paid so that I would get a quick appointment and her secretary arranged for all my records to be sent up from Truro. Within a week of the consultation I was seeing a Dr at the Research Facility. I was turned down for the first trial that they put me foward for but then got onto the Patriot which is for solid tumours in general rather than for ovarian cancer.

[Lucidalil in reply to Neona]

Well done you for getting onto the trial 😁 and so quickly - just a pain it means the long journey.

I was at UCLH for a seminar on BRCA a few years ago with my youngest daughter.

I also have a solid tumour so you never know..........

I have had quite a bit of chemo, apart from having 2,5 years Ned free after my frontline treatment (2013) when my tumours starting growing my treatment has just been on a merry go round of shrinking, growing, stable etc. I also now have resistance to some chemos so am always open to a trial 😊.

Sorry to hear that your frontline treatment chemo didn’t work and left you with kidney damage 😮

My appointment at the Marsden drug development unit is next Friday - So will see what happens 🥴

Carolyn x

[Neona]

Please let us know how it goes.

[Lucidalil in reply to Neona]

I most certainly will , thank you for giving me some insight into phase 1 😁

[Maxjor]

I went to Dana Farber cancer institute for a second opinion when I knew I was relapsing and was offered a phase 1 trial. I discussed my concerns and the trial doctor said the protocol is to start you on the lowest dose, then if you tolerate it well, they increase dosage. She also told me that when the trial is being reviewed by those who approve them (here, the FDA they have to show all they are doing to ensure the safety of the patient. I felt better about it after that ( ended up not qualifying) but the explanations helped. Oxox

[Lucidalil in reply to Maxjor]

Thank you for that information 😁x