I had 3c now recurred. How do people get on trials or even see what's out there?

[Indigo-Blue]

Sept 11 carbo/taxol

Serious adverse reaction to taxol

Jan to March 12 single carbo

May 12 debulked

Jun/July 12 single carbo

Aug 12 ct NED

Dec 12 CA125 rising

April13 Letrozole

May13 to Dec13 CA125 slowed then leveled.

Jan14 CA125 rising

[wendydee]

Hi!

Have you had a look on the Ovacome website? I think there's a factsheet - under ' resources' I think.....if not, the helpline nurses are very knowledgeable (Mon - Fri only) on 0845 3710 0554. I'm sure I've heard others on here mention a list of trials that are going on, but can't remember where. Good luck with your info-seeking.

Love Wendy xx

[Indigo-Blue in reply to wendydee]

I will look at these sites Wendy, I'm not a fan of the phone but I might pluck up the courage. This disease seems to have wiped out all my self esteem along with my health ~ I feel I don't know where I am or what to do next! My onc just seems to want to wait until I'm worse then try again with the same treatment as before. Thank you for your kind reply love Linda xx

[Whippit]

Dear Indigo-Blue

Your question is just what I was asking myself in June last year when I knew I'd need a second line of chemotherapy and my health board refused a referral to a clinical trial at the Royal Marsden. I was diagnosed with 3C in March 2011 and I was fortunate that I had nearly a year after being told that I had relapsed before needing further treatment.

I asked the oncologist at my local hospital whether she could advise on what was available in other areas and she said she could not be drawn on the subject which I found very frustrating. If your local oncologist can't advise you it would seem the only alternative would be to get opinions privately from different centres which would cost a fortune. I was told it isn't for a patient to ask about a trial but they would be invited if they're suitable which I've found out not to be the case. However, if you're stuck with that sort of advice it makes it very difficult to find out where you should be going for treatment. In an ideal world your local centre would refer you to an appropriate clinical trial even if it's in another area so long as it's feasible to travel to and from the trial centre.

I understand if you're based in England you can choose which cancer centre you attend. Living in Wales I didn't have the option to choose where I received treatment so I realised I needed to get an address in England. I couldn't really find out what trials were available in my nearest cancer centre in England which would have been Bristol. In hindsight, had I had time on my side, I would have got myself a primary address in Bristol, referred myself to Bristol, checked them out, and then decided whether I wanted to remain there. As I didn't have the benefit of time or knowledge - I was getting to the point of needing chemotherapy quite urgently - I went for the centre I knew of with a reputation for running numerous trials and that was the Royal Marsden.

I wonder whether one way forward for you would be to put up a blog asking members to tell you what their centre centre offers in the way of trials? Another port of call might be Cancer Research UK, or the Research Officer at Target Ovarian Cancer. From my own personal experience I can't praise the Royal Marsden too highly but the practicalities of travel and accommodation have to be taken into consideration, I know there are many other centres across the UK where you would have access to a good number of trials.

Good luck with your search. If you think I can be of any help at all after my experience of the last year please PM me. I'd be happy to share anything I've learned.

love Annie xxx

[Hidden in reply to Whippit]

Dear Annie,

I attend a hospital that has a range of trials on offer.

When I was first diagnosed I enquired about a trial, and they said the same to me, that I had to be invited to go on a trial.... when I had my recent chemo I was surrounded by people that was on a trial... yet I've never been on one or invited to go on one...(I really don't get it) the lack of clarity from the medical profession is so frustrating.

Love x G x

[Whippit in reply to Hidden]

That's shocking Gwyn. The UK has been a world leader for cancer research but there are trials in the UK that aren't filled. If this continues we are at risk of losing international funding for our research.

Did your hospital not have a research admin team you could speak to? Even the Velindre in Cardiff had research officers though they didn't advertise them. You had to ask to see them. It doesn't necessarily mean because your hospital ran a number of trials that you would be suitable for one of them. You might have to travel to another centre but if you've asked about them you should at least be told what's available.

My oncologist referred me to the Ocean2 Trial in the Royal Marsden because it would give me access to Avastin. The total medical costs covered by the trial were in excess of £35k all representing a saving to my local health board who would not have to fund my treatment for 18 weeks. Even then they refused and I've never had an explanation why.

xxx Annie

[Hidden in reply to Whippit]

My hospital are leaders in trials so the chances are that they have most trials running there, it is just that I was told this in the beginning (that people were invited on a trial) in all fairness I haven't asked since but it hasn't been mentioned either.. I know they have a strict criteria for being on trials and I might not fit the criteria....(although come to think of it) It was mentioned once that I didn't fit the criteria as I was out of time...(but not my fault I was out of time lol) anyway I feel the treatment I have had has been the right treatment... and feel fortunate that I am in a place where my oncologist knows what he is doing (I think) xx

[Hidden in reply to Hidden]

Hi Gwyn and Annie .. It's my experience that it's an unwritten agreement to keep patients in their own network unless they themselves ask to move which I find is a situation which needs to be changed, I've seen documents which state that patients should be given suitable treatments within their own networks. There is now a European database although it's a few months out of date.

clinicaltrialsregister.eu/c...

If we don't ask about trials, how can we expect to exercise choice under the NHS England? X

[Hidden in reply to Hidden]

And I have had exactly the same answers as Gwyn x

[Indigo-Blue in reply to Whippit]

I asked my oncologist but she has said that going on a trial is for when all other avenues have been tried. She thinks that I should try combined chemo again and then I can access avastin. Comb chemo put me in ITU the last time so it would have to be something without taxol. Frankly, although I was very sensitive to the chemo I am not looking forward to doing it again, but would like the avastin. I am at Salisbury. I don't know if there are trials there. I will ask. I did do a blood test and fill in a massive form for research to see if I carried the bracca gene as I have 2 daughters. But that was over a year ago and I've never had the results despite chasing. Sometimes I feel that I just wish the axe would fall and get it all over with

Thanks for you very kind and hopeful reply though! Linda xx

[Whippit in reply to Indigo-Blue]

Dear Linda

We're definitely following the same path! I did the genetic test for BRCA as I have two daughters and 2 immediate family members with breast and prostrate cancer, and didn't hear from them for five months. After chasing they eventually told me they'd lost my blood sample! I heard a year later that the test was negative but I've always been slightly worried in case the sample they found was in fact not mine! I think it is important to find out as I heard at the recent APPG that there are treatments available for women who are BRCA positive or indeed women who are thought to have BRCAness features.

I had carbo-platin single agent (due to a hospital mistake) first time round. When I relapsed my new hospital had a choice of trials for me so they clearly didn't take the same view as your oncologist in Salisbury that trials are for when there are no other options available. That is indeed not the case if you read a number of posts and blogs on this site - but it is the case for patients for whom there are no other treatment options and they can be referred to Stage 1 Trials. I'm assuming from what you say that's not the case for you. I also realised that when my oncologist was providing advice she was doing so in the funding constraints of my local health board and was therefore not giving me the bigger picture of what was actually available anywhere else.

At my new hospital I was told of a range of trials I might be suitable for and a range of different chemotherapy options. One option was a combination of Carbo-platin, Gemcitibane matched with Avastin obtained from the National Cancer Drugs Fund (England). My oncologist felt that would be the best option for my particular situation because the trial she was thinking would be suitable for me - carbo-platin, taxol and PARP inhibitors could be used next time as it would be likely to be open for a few years. Whilst I'm not on a trial for my chemotherapy I have been put on a trial whilst I'm on the Carbo-Gem/Avastin treatment which measures the patient's wellbeing whilst on Avastin.

I don't know anything about Salisbury but you could check with Simon Newman, Target's Head of Research what trials they have there - [e-mail]. My former hospital only had one trial involving patients and I wasn't suitable for that. Now I'm at a hospital with a large number of trials to choose from it has opened up all sorts of options for me. If you are referred to a trial at a distance from your local hospital you are often awarded a grant towards your travel costs but this wouldn't be awarded if you decide voluntarily to attend a hospital at a distance from your address.

Hope this is helpful. xxx love Annie

[Hidden in reply to Indigo-Blue]

The comb Avastin are only for first and second line so there is conflicting advice here Linda x

[wendydee]

Dear Linda, please give the helpline a ring....everyone says how lovely they are on there. I have met Ruth (but not Susan), and she is just so easy to talk to. And she's been through OC diagnosis, so knows what the worries are. I've got a feeling there are trials in Southampton, but many other hospitals get involved. They would tell you at the Ocacome office, but it closes for the weekend at about 4/4:30 on a Fri I think. I filled in a form for genetic links but didn't hear until I went to see a consultant much later. I think you're only told if it comes up positive. That's good news! I can understand you bring dispirited when it seems another lot of chemo is ahead, but it may be better to bite the bullet now and get access to some more varied treatment.

All the best with getting more info. I know it's not what you feel like doing right now, but......

Love Wendy xx

[Hidden]

What a frustrating and confusing time you're having!

It is quite unacceptable not to have had your genetic testing results after a year. I suggest you contact the PALs unit in the hospital and ask them to follow up your concern/complaint. It DOES take several months to get the results, but not that long. In my case I was given an appointment with the genetic consultant for the feedback (negative). I would expect this to be standard practice. Have you got someone who could help you fight your corner? It's not always the easiest thing to do at the best of times.

Agree with the others about trials - I've been invited to join a number over the years ( based on seeming a suitable candidate for them, though in some cases further down the line I was ruled out and in others I opted not to do them).

If you do an internet search on "ovarian cancer trials uk" you'll get Cancer Research; Macmillan and Ovacare all listing trials and which hospitals are involved with them (I'd have done the links myself but computer seems to be on strike today).

All the best xxxxx

[MargaretJ]

I was diagnosed 3c in 2009 and have had 2 recurrences. I was on the ICON 6 trial but was taken off because I became allergic to carboplatin. With trials it depends whether you fit the criteriia for trials in your area. Try Cancer Research UK's website and search for trials! You might qualify for trials in another area but that would mean travelling for ratment. Luckily for me St James on Leeds is a centre of research excellence and us actually easier for me to get to thank my local hospital in York because of the traffic conditions!

Margaret