Recently I asked my oncologist in Cardiff and the Vale whether I could be referred to a clinical trial in Bristol called DESKTOP. She was dismissive and said I wouldn't be eligible but her argument was flawed even to my untrained ear. I asked whether I couldn't be referred to Bristol just for an opinion for my eligibility and she then said she couldn't comment on the trial but that they were working on putting it in place in Wales.
My oncologist then referred me to another trial at the Marsden which would have given me access to Avastin. I rang the RM and spoke to a secretary there who told me there was a funding problem. I decided to move and I am now a patient at the Royal Marsden who say I'm a candidate for DESKTOP and I've started the process of joining the trial.
I'd just like to know if anyone else has experienced negative responses to requests to join clinical trials outside their immediate NHS Trust. I checked with Cancer Research UK and the National Cancer Research Network UK and apparently UK residents are entitled to join clinical trials anywhere in the UK. This helps to fill trials with the best patients, it helps patients access new treatments regardless of their home location, and you'd think it would help the oncologist from the referring hospital who would then have first-hand experience in leading-edge clinical trials that aren't available in their local health service.
Cancer Research UK and the Cancer Research Network UK are looking into what caused the block and they are interested to hear of any other similar experiences.
Please let me know if you have had a similar experience. Thanks so much. xx
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I wonder if your welsh hospital's reticence is due to the mistakes made with your original treatment (if I remember correctly). I suspect your oncologist thinks you will be ineligible because you have had previous platinum treatment that has not eradicated your disease, and their mistakes will be exposed. Hopefully, this is a matter of interpretation, and you will be accepted for the surgery they probably should have performed originally.
As you know, I'm no stranger to extreme ambivalence on the subject of chemotherapy, as it does so much damage to everything, whereas surgery is targetted upon the diseased areas. Hopefully the time will soon arrive when better targetted chemical treatments can achieve better results, but I fear cost is what is holding up availability of these.
I sincerely hope you find the right way through for you.
Thanks so much for your thoughts and detailed response. I looked up DESKTOP and it's available for women who have just been diagnosed, and they can participate again to have radical surgery on first recurrence. I realised that this would be my last chance of having radical surgery so I've gone to great lengths in order to have access to the trial.
I rather think the NHS Trust that treated me have a lot to hide. For a start I was sub-optimally debulked in a two-hour operation and was told by the surgeon that she would have liked to have taken out more disease but was prevented from doing so by her supervisor. I met him the following day but didn't question him thinking it wouldn't do to embarrass the surgeon. She is, however, a senior consultant so doesn't have a supervisor as such though the 'supervisor' i.e. the Head Clinician in an NHS board would be responsible for negotiating how many theatre hours to allocate to any procedure.
My prescription for carbo-platin and paclitaxol was also messed up so I received single-agent carboplatin. This left NOD after 18 weeks of chemotherapy.
All said, I've still done incredibly well and my relapse has been a very slow process - now over 9 months and still no urgent need of re-starting chemotherapy.
What I can't understand and what I want to resolve is why my request to join a clinical trial that I so clearly fitted was refused/dismissed. I have to say my former oncologist is a really lovely caring woman. Once I decided to relocate to London she wrote a 3-page detailed letter to the most senior clinician in ovarian oncology so it's clear that she does go that extra mile to help her patients. There must be a block further up.
It's vital we get to the bottom of this for all patients to ensure they have equal access to treatment all over the UK. People in Scotland, for instance, could join a clinical trial which includes Avastin. That to some extent would resolve some of the terrible dilemmas facing them there.
I surely can't be the only person who has found themselves in this situation?
I am also on the desktop trial, I was selected for surgery which I had at end of Jan, just finished my chemo and ca125 is now around 9 (was 54 on diagnosis) so hopefully all well, must awaiting scan. Just wanted to wish you all the best in the trial. I was not really aware of clinical trials until I had recurrence but was offered it straight away, didn't have much time to think about it as my head was in a spin at the time after being told I had recurred lol xx
Thanks so much for your supportive message. I'm really sorry to read about your recurrence and I'm not surprised your head was in a spin. You were lucky to be in a place where DESKTOP is offered. I've had to relocate, find a new GP and quite a lot of other upheaval. It would be really lovely to compare notes - to hear your experience of radical surgery. I must admit I'm rather nervous at the moment. A laparoscopic procedure next week to see exactly what's going on inside before they give me the go-ahead. At least if that trial isn't suitable at the Royal Marsden they have plenty more up their sleeves.
Annie, thank you for sharing your experiences. It will certainly make us more "aware" if ever we hit a brick wall trying to join a clinical trial. Did you have to actively go looking for a clinical trial or was it mentioned to you at any point? I am asking because I was disappointed to find out after finishing first line treatment that I wasn't told about an ICON8 (weekly taxol) trial that was available at my hospital or another trial for intraperitoneal chemo at another hospital not too far away. I was not well at all when I was diagnosed and certainly in no frame of mind to go researching trials. I may or may not have taken up the trial if it had been offered but it would have been nice to have had the choice or been told about it.
Am so happy that you were able to re-locate to have access to a broader range of treatments. A shame that you had to resort to this though but it seems things are working out
How I empathise with you. I found out that I could have taken part in an Icon8 trial when I had my first line of chemotherapy. My oncologist was the lead contact for the trial in my hospital. She prescribed duel-agent chemotherapy but I didn't see her till long after I'd finished the course because she was on maternity leave by the time my treatment started. I was, like you, disappointed not to have been given the choice.
Sue (PR Chick) told me about the intraperitoneal trial which I found out is called PETROC. I was interested in that trial because it seems sensible to put the chemotherapy straight into the site but it requires patients who've been optimally debulked. My surgeon told me she was prevented from taking out more disease so I didn't fit the bill for that trial and it wasn't available in my NHS. I have a friend in Devon whose oncologist went to the trouble of getting two surgeons to perform her surgery in order to give her an optimal debulking so she could take part in PETROC. Both of those ladies have done really well after their initial treatment but I've heard it was a bit more uncomfortable than the standard way of administering chemotherapy. I asked if I could have it in Cardiff and was told they don't have the equipment.
Ovacome don't seem to like our mentioning other charities here but in the interests of sharing information with you I read about clinical trials for Ovarian Cancer on the Target Ovarian Cancer website. You can search using your postcode. When I didn't completely understand the information given there I phoned their Research Manager, Simon Newman. His email address is: SNewman@targetovarian.org.uk. He's a research scientist and is the best and most impartial source of information I have found. There's also a list of clinical trials on the Ovacome site but it doesn't include detailed information that a patient can understand so I found the Target trials database more informative and helpful in understanding what trials are available. Members here have said the Target database is not complete so the other source of information is Cancer Research UK but I found their information much more difficult to access. Unfortunately my former oncologist would never discuss trials unless they were being carried out at my previous hospital and the information she gave me on DESKTOP was inaccurate. She told me I wasn't eligible and the reasons she gave were untrue. She would have known the terms of DESKTOP because she was working on the funding bid to put it in place in Cardiff.
I volunteer as a patient research advocate for Target and Ovarian Cancer Action and I've joined the SELCRN which is part of National Cancer Research Network UK. If you're not working and have time to volunteer this is really an enormous help. Without that experience I'd never have asked to be referred to trials in another NHS area. I'd have probably accepted everything my oncologist said. It didn't occur to me that oncologists might not be honest and I'm still pondering on that given they swear the hippocratic oath. Mine, to be fair, was managing my expectations within the funding constraints of my NHS board but I discovered it is definitely sub-standard to other health boards in Wales. It all fell into place when I asked her if we could have a blue-sky discussion and talk about what was available anywhere rather than in Cardiff and the Vale NHS Trust. To be fair she wrote a lovely detailed 3-page letter to refer me to the Royal Marsden so I do know she cares. She's just constrained by the NHS that employs her. Moving my primary address has been quite an upheaval but as I had to move out of Cardiff and the Vale it seemed no more problematic to relocate to London than Swansea or Bristol.
I'm sorry this has turned into a bit of a rambling post. I just wanted to give you all the information I could so you can get the best possible treatment. I've just found out that referrals to other NHS trusts require your home board to fund any non-trial clinical expenses so it's worth asking your oncologist before you get your hopes up whether this is likely to be a problem for your board.
If you ever think I can give any more information to help please ask. I feel bad that I've looked after myself but I do hope to raise awareness of funding constraints and our right to access equal treatment regardless of our postcode.
Dear Annie, thank you so much for your hints and tips on the subject of clinical trials. I agree totally that the target ovarian clinical trial search facility is more user friendly than others I have encountered. It was from there that I discovered the info on the PETROC and ICON8 trials... and the realisation that I had "missed out". I guess when it comes to clinical trials, it's up to us to do the research and not to expect the oncologist to mention it.
It's ironic but I lived for over 10 years a few miles away from the Royal Marsden in Sutton, moved away and got OvCa 2 years later
You are in good hands there. Thanks for your kind offer of help and please do let us know how you get on with your clinical trial when it happens.
I had not heard of the Desktop Trial but was referred for further surgery, when my cancer recurred after 9 months, by Prof Tim Perren, who directs most of the research at Leeds. I am all fired up to ask about further available trials when I see the Oncs today! Now to access the websites and gen up! I asked about Avastin but I do not qualify!
Thanks Margaret. The information on the trials database is really helpful. It does enable you to work out the basic criteria to see if you fit and this is because as we wouldn't get our hopes up about a trial for which we're not eligible. You're lucky to have such a progressive team in York and Leeds. xxxxx Annie
I have had a lot of negative response regarding going on a trial, its a bit of a long winded story so I will have to fill you in a bit later on (curently at work). However, after 18 months of nagging, I have finally got an appointment on Tuesday at UCLH regarding a trial!
Dear Vicky, I'm so glad you've got an appointment at last. The problem is that often we don't have 18 months to argue the toss about entering a clinical trial. Do you know what caused the delay for you?
I just hope the problem I experienced re funding is going to be addressed by the relevant bodies. It seems there needs to be a separate a fund to make up the cost of non-clinical trial care that is currently picked up by your home health board as this is what is preventing many women entering trials and trials then to not attract the most suitable candidates. A crazy situation.
I'll look forward to hearing more when you're not in work. xxx A
I suppose that the ultimate reason it took so long was because I was simply not ill enough and my onc was just not willing to put me forward when, as she told me, 'there are so few spaces on the trials and many more people worse off than me'. But I had tried to discuss it on many previous occasions and went to appointments armed with a printout of the trial criteria, but she wouldn't even look at the paper and put me off each time with a different reason.
Among the reasons for me not being suitable for a trial were:
There were no trials suitable for me (this was not true, as I am suitable for the PARP trial)
I am not BRCA positive (again, not correct, as you can still go on the PARP inhibitor trial if you have high grade serous OC without being BRCA+)
The Royal Marsden is too far away from me and it would cause me too much disruption.
Barts would be doing a PARP inhibitor trial soon, and I could be put forward for that (though this was never mentioned again and no other doctors knew anything about it)
The truth is, that after about a year (4 or 5 appointments) I gave up asking because it seemed like such an upward battle. I had become more comfortable with living with the disease as things seemed to be progressing very slowly for me, so I left it until my scans had shown progression and we were talking about chemo again and mentioned it. In fact I emailed her secretary the criteria for the PARP inhibitor trial and highlighted all the ones I complied with (most of them ) And she wrote referrals to the Marsden & UCLH and I have an appointment with UCLH on Tuesday. She now says that I am the perfect candidate for a trial. When I reminded her that I had been trying to tell her that for over a year, she just said that I was not unwell enough then. Maybe the root cause is financial but maybe she just wanted me to enjoy my life while I was well and not have to worry with treatments etc.
I think you have done the right thing by putting yourself first and doing what you need to do to get onto a trial. If anything this can only highlight how unfair the system is and therefore improve things for everyone. I think it is very interesting that they are now looking into whether surgery and chemo are in fact better than just chemo, when they have been telling us for years that it makes no difference. I do hope that that you get a really good result from it.
Oh dear your experience chimes so much with mine, though I confess I wasn't as well organised and well-informed as you. I've joined the SE London Cancer Research Network and we're looking into why hospitals have been reticent to refer patients to clinical trials in another hospital. Apparently the referring hospital has to pick up the financial tab for the costs that the trial itself doesn't cover.
It really does need to be exposed. My oncology team did provide some very helpful links to enable me to understand what was wrong in the system in Cardiff and the Vale. I think they may well be relieved to watch the news last night and read the papers this morning which have made public the fact that Cardiff and the Vale NHS failed the audit by the Royal College of Surgeons. There is so much more mis-management than just surgery. Let's hope it is uncovered and we improve whatever is wrong so we achieve a fairer world for us all.
I really do admire your persistence. You were right to challenge. I'm aware from my cancer research volunteering role that they cannot find the fittest and most eligible patients to fill trials so the very people who are providing your care are in fact standing in the way of progress that might lead to an eventual cure. I rather think it's the management of the NHS putting pressure on the oncologists and not just serendipity on the part of the clinicians.
I've asked whether there could be an independent fund in order to pay for these additional costs in order that hospitals don't suffer financially from referring their patient to a suitable trial in another health board. Inevitably in bidding into project you don't have all costs covered. It's in the national interest to ensure that trials are filled with the best patients regardless of their postcode.
The good thing for Londoners is that the SE London and SW London Cancer Research Networks will merge in October so this will ensure all the hospitals work more closely together and patients are referred to the most suitable hospital. As always the time delay is very frustrating because those of us with ovarian cancer only have a short window and if we miss that whilst the authorities are prevaricating amongst themselves we may miss a unique opportunity to take part in a trial. The members of SELCRN have all benefited from being on trials. I'm the only one in the group that hopes to do so soon. We're all being given training so we can act as patient supporters to promote trials and act as an independent reference for patients who are unsure whether or not to participate. It'll be an interesting experience to complete the training and then to hear exactly what is available in London.
So Vicky I wish you well at UCLH. Perhaps we'll meet up with the new merged london Cancer Research Network. I'd love to hear how you get on.
Hi, Im starting to get worried now after reading this thread. I am currently experiencing my first recurrance. I asked my onc at Liverpool's Clatterbridge cancer centre if she was aware of any trials that I could access. She said not and that she would alert me if she found any. Should I be looking myself? Where is the best place to start?
I'm sorry that reading through this thread has caused you some worry. I wanted to reassure you that clinical trials are not something everyone gets involved with, so please don't be overly concerned if there are not any available to you right now. All clinical trials have strict criteria and run for set amount of time, so the trials available at any one time will vary.
A good idea is to talk through your current treatment plan with your clinician so you are confident with the next steps in your personal situation.
If you are then interested in finding out more about clinical trials, there are some useful resources here:
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xx
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