Find a Clinical Trial near You!: I've just... - My Ovacome

My Ovacome

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Find a Clinical Trial near You!

Whippit profile image
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I've just discovered Target Ovarian Cancer have an interactive page where you can look up trials for Ovarian Cancer and the criteria for recruiting women. I've found the information really interesting - hope you do too. You can find the information at

targetovariancancer.org.uk/...

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Whippit
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ChrisH profile image
ChrisH

Thanks, I didn't know about that page. It will be really useful in the future!

Chris

Whippit profile image
Whippit

I've also found another site - jamos.co.uk/

This one is a bit worrying. You can input your details and the company find a clinical trial that you can take part in .... and get paid for doing so. I started to look into it but they charge an admin fee to join. I wonder what the medical profession think of this.

sharonforce profile image
sharonforce

Hi Annie

Thanks for posting the link - I always like to keep updated on current trials.

Looking at the Target Ovarian Cancer database I can't see the BMN673 trial that I was on (it is still running) - perhaps because it is not solely used for ovarian cancer.

Cancer Research UK also have a trials database listing all trials currently in the UK: cancerresearchuk.org/cancer...

and clinical trials.gov lists all the trials worldwide: clinicaltrials.gov

Best wishes

Sharon

Whippit profile image
Whippit in reply to sharonforce

Thanks so much for posting this additional information. It says on the Target site that it's currently being updated. I haven't seen it before so I think it's in development. I'll mention your BMN673 trial to them.

I think it's good to keep abreast of current trials. Our Cancer Centre in Wales has only just received the go-ahead to conduct a clinical trial for Ovarian Cancer. Apparently if you are aware of the trials and feel the results would benefit you it's possible to ask a local hospital which isn't part of the trial if you can receive that treatment.

What is also good and reassuring is to see just how much is being done. It makes me feel less abandoned. xxx love Annie

My biggest concern with many of these trials would be that you can end up receiving the placebo treatment and not actually benefiting from any ground breaking regimens. It would have to be very last resort for me to gamble on. Rgds Paul

Whippit profile image
Whippit in reply to

Dear Paul,

My interest in trials is merely altruistic. There doesn't seem much point in getting this disease and dying if you can't put something back before that happens. If we don't become involved then there will be no trials. If there are no trials no cure or screening methods will be discovered.

I don't hold out much hope that advances will make a difference to my life expectation but I am investing in the hope of preventing death amongst women in the next generation. Hopefully making a political representation will also be of some value.

Problem is with his disease that we have such a short window of opportunity - and some women don't have a reprieve - so it seems to me it continues to be the Cinderella of Gynaecological Cancers.

love Annie x

in reply to Whippit

Hi Annie, I understand where your coming from and agree with your sentiments. My point was really to highlight that those of us who think a trial performed on the onset of diagnosis or early may be their saviour rather than sticking to proven treatments. This was only because you don,t actually know if you are receiving anything new or not during the trial process. Hence why it should be considered as a last resort and yes it will benefit others in the future. Love Paul x

Whippit profile image
Whippit in reply to

Yes, exactly, but the one thing you will benefit from is being treated at a centre of excellence and if you're part of a trial more detailed scrutiny. One also hopes that if there is a breakthrough you'd be at the front of the queue!

This site is fascinating just learning what different treatments are being given. It's a very complex situation isn't it.

Love to you both xxx Annie

in reply to Whippit

Yes, exactly, but I would want to know I was on the new regimen and not the placebo and that will never be likely. Love Paul x

Whippit profile image
Whippit in reply to

I looked up the details for the BMN673 trial that Sharon mentions. One of the aims of a trial in the USA was, 'a dose escalation phase in which the maximum tolerated dose will be defined'. Yikes I definitely would rather be in the placebo group for that one!!! xx A

wendydee profile image
wendydee in reply to

When I was in an NSSG meeting with oncologists and health workers, I was told that the placebo treatment was at least as good as the current norm for treatment, so no-one would be disadvantaged by taking part in a trial. I don't know if there is any other info on this?

I would volunteer for a trial if I had a recurrence on this basis.

Love Wendy xx

in reply to wendydee

Hi Wendy,

When I was first diagnosed I inquired about a trial, and I was told that you are invited onto a trial (not a volunteer) and that there are very strict guidelines for a trial... so have to fit the criteria.. this is why they invite people as they keep an eye on the patients records to see if they fit the criteria at the time.

You are right about the placebo as the placebo isn't given instead of conventional treatment but as well as.

Love x G x :-)

There are different trials for ovarian Yes some do have a chemotherapy and an additional drug could be the real thing or a placebo others have the real drug. some have chemo,

placebo and the drug.

when you have the chance to go on one,which has to be in a criteria which is suitable to your stage of disease, you have the chance to go over the study with a fine tooth comb and decided whether it is for you or not, I have been on 2 trials one Icon 6 which included either placebo or drug I had t come of it after about 14 treatments didnt know what drug it was but will be told when the study finishes. The other is the OSI-906 and paclitaxol, which has 3 arms to it. I had the 3rd arm which didnt include the drug the 1st and 2nd arm had the drug.

It has done what it said on the tin. I must admit I did feel like jumping on the computer and saying Hello its me again give me the drug. But on hindsight I am very pleased with the results. Time will see when I have my scan!!. I am one of those people who puts there hand up straight away.I enjoy the peace of mind with the constant attention and monitoring that you get, because we just dont know what is happening inside us and if there is any bubbling going I want to know sooner than later. Pehaps my experience of drugs over 35years with an chronic condition crippling rheumatoid arthritis and no cure and watched how I have improved from a wheelchair to having a quality of life albeit still no cure but having the benefit of many poison cocktails. They did say they thought my OC was chronic, I thought chronic I can manage!! Well one can only dream.

Regards Barbara

Whippit profile image
Whippit in reply to

Dear Barbara

I'm of the same view as you. There just aren't the same level of trials going on in Wales unfortunately. Hopefully that might change with a bit of prompting of the National Assembly for more funding. To my mind all the awareness-raising in the world isn't going to help as so many women are asymptomatic until it's too late. Obviously it's good to raise awareness because raised awareness leads to questions with the powers that be and more funding for research. It is only through clinical trials that we'll ever hope for an effective screening test to be found - or a cure. This hope sustains me and I'm sure with new breakthroughs being discovered on a regular basis that our hope one day will be realised.

You're quite right about the ethical principles governing research. It's all made very clear to us beforehand what we would be letting ourselves in for and everyone receives feedback after the trial has been concluded.

I have every sympathy for you dealing with chronic rheumatoid arthritis. My dear Mum had both rheumatoid and osteoarthritis and it was heart-rending to see how much this disease took its toll on her. The family tried everything and you'll probably think we're slightly crazy but one of our explorations took us to a lady who practiced dowsing to identify what foods one should and shouldn't eat. She advised my Mum to avoid gluten. I know there's no double-blind to this testament, but by restricting her diet and following a recommended regime my mum's arthritis improved exponentially. This lady also advised my sister who has had 3 advanced and aggressive types of cancer. My sister followed her advice and she is none the worse for it. Health and wellbeing is a strange thing.

I'm really pleased to hear the trial you're on has worked for you. I hugely admire your spirit.

love Annie xxxx

RuthPOvacome profile image
RuthPOvacome

Dear All

Just to remind you that Ovacome has a section on its website under 'about ovarian cancer' listing the current trials for ovarian cancer. Clicking on the link will take you the section of the cancer research uk website where the details of the trials are mentioned.

If you have any queries do give our support line a ring

Ruth

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