phase 1 clinical trials at Royal Marsden — anyo... - My Ovacome

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phase 1 clinical trials at Royal Marsden — anyone has experience?

Lookingahead profile image
10 Replies

hi all .. I’ve been offered either a phase 1 clinical trial or a phase 3 clinical trial at the Royal Marsden . The difference is that in phase 1 , a possible new drug is having its first tests but in phase 3 , the drug has been shown to work in some patients and may move to being approved.

however , in phase 1 , you definitely get the new trial drug but in phase 3 you either get the standard care eg weekly Taxol or standard care plus the promising drug . The computer chooses who gets which.

Does anyone have experience they can share ?

I have the choice at the moment and not sure which way to go !

love to all and keep positive . ❤️🙏

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Lookingahead
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10 Replies
lesleysage profile image
lesleysage

Hello, would it help to talk over your options with either the Ovacome Support team on the Helpline or your CNS or GP?

I've found that sometimes, hearing myself having to explain options and then answer people's questions on how I feel and in what areas I may want to know more information, helps me decide more peacefully for myself.

Warm wishes for a gentle and really enjoyable festive season. Take care

MPee123 profile image
MPee123

Have you got any more info about the trials please? X

Newbery3 profile image
Newbery3

So hard to make a choice like that for you, I'd follow the others advice and speak to overcome x good luck x

organicinna profile image
organicinna

Hi. I Just started it phase 3. Had 2 sessions. Don't know what i got but defo got taxol and side effects 3 time around is awful, can sleep , feel ill, no much quality of life....every week is too often... Dreading Christmas , how am going to be? On the top suffering with cold cap because don't want to loose hair again... Will talk to key worker...she is very lovely ......😊 wishing you well xx

Lookingahead profile image
Lookingahead in reply to organicinna

thank you and so sorry to hear how unwell you are . It is so difficult —but please persevere and keep positive . Hopefully it will work for you and when you finish , you will recover and be well . Sending hugs ❤️🥰

Kblaisel profile image
Kblaisel

try researching the two different study drugs. Sometimes they are already tried in other cancer conditions or at least in animals. Then you can examine the mechanism of action and make an informed decision based on your tumor type.

organicinna profile image
organicinna

THANK yoU dear , same to you xxx have a nice nice Christmas's and New Year.

delia2 profile image
delia2

I think what Kblaisel says is helpful. See what the drugs are supposed to do and what’s been shown already. How long is the phase one trial? The team at the Royal Marsden must be able to give some advice about the drugs being tested. Keep us posted and best of luck! Xx

Neona profile image
Neona

Yes! In my case frontline chemo didn’t work so I particularly wanted a phase one trial in case I got on the chemo arm of a phase 2 or 3 trial. My trial is under Royal Marsden and I go to UCLH Clinical Research Facility. The care is fantastic. I have been fortunate to be still on this trial for 5 years now although this is possibly unusual ?

Guess it depends on your circumstances and the criteria for the trial you are being offered. Wishing you the very best of luck. Wendy

Hello Looking ahead.

I am on a Phase 3 clinical trial at The Marsden at the moment. Pretty sure it’s the trial you mention. I have just started Cycle 5 so am about to have treatment 14 this week. I have the weekly Pacitaxol plus drug/placebo. The Pacitaxol has done its usual and depleted my neutrifils. I am also anaemic but otherwise find it’s ok. Having the cold cap this time and though hair has thinned it’s enough to look ok.

Your bloods (plus other tests/measures are done at very regular intervals. Scans whilst on the trial are every 8weeks (less frequent when in “follow up”)

With the regular monitoring I think it would be obvious quite quickly if the trial wasn’t working for you and you would stop the trial and look at other treatment options.

When I started the trial there were two trial options available. The research team guided me to some extent by saying if you do this one first, the other will probably be available later for you. (No guarantees of course). They also recommended “holding back” a standard treatment that I had been offered for later. So they laid out options as they applied to me

When I began the trial I rationalised that I was having standard NHS treatment so no worse off if I got the placebo…fingers crossed I am on the trial drug.

When starting the trial my main hope was to extend my life and it still is. I do now think more about the women who have gone before and offered their bodies as a means to asseratin the effectiveness of new treatments. I am pleased to be doing a little bit to help the development of new treatments and the women who will come after us. We would have fewer options if they hadn’t participated in trials.

So, I know it’s a big decision. Remember however you will be under one of the best hospitals in the world for cancer care and under one of the best oncologists internationally. They do want to do the best they can for you.

The team is wonderful, you have plenty of opportunity and access to DR’s , research nurses and chemo nurses. They encourage you to phone in if you need to and really look after you well.

I have looked at the pharmaceutical companies website and their results are very encouraging….there is a patient leaflet online which explains what the drug does…

I wish you well and peace in making your decision. Happy to answer any specific questions if you have any.

The pharmaceutical company will pay your expenses.

Xx

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