I have an blue-sky appointment with my oncologist this week to consider what we're going to do to get me the treatment I need despite living in Wales where access to treatment and drugs can be problematic.
A while ago I blogged about a clinical trials database I found on Target Ovarian Cancer's website. They now have a research manager with a background in clinical research and part of his JD is to research and update their clinical trials database.
This is a fantastic resource as you can search via postcode and distance you're willing to travel, search by date or trials about to be launched. This is particularly important as your local cancer centre may not have trials suitable to your condition and if you're unlucky like me you may live in the 'wrong' part of the UK to have access to the best treatment for Ovarian Cancer. If you're willing to travel there are a lot of new research projects coming online.
Target Ovarian Cancer is another charity. It's confusing isn't it. There are 3 UK-wide Ovarian Cancer charities in London. I've now been to visit all three so I'm getting the picture of who they all are.
I'd imagine designing a website is tremendously difficult with so many competing bits of information to be accessed. I don't suppose I'd have had the presence of mind to think about searching for clinical trials when I was diagnosed 2 years ago. Women are lucky if they happen to be at the right place at the right time to get on a ground-breaking research trial.
Thanks for posting this Annie. So frustrating that we are not all being treated on a level playing field here but whilst this is the case we need as much info as possible as to what is available out there. Very interesting.
Thanks for all the good wishes Lynne. As I understand it clinical trials are available wherever we live in the UK but you'd have to factor in the cost of travel and overnight accommodation.
If the playing field isn't even then we need to take whatever steps we can to make it even. Going back to my mantra to accept what we can't change, and change what we can - I recognise I can't change the fundamental divisiveness of healthcare in a devolved UK - but I don't have to put up with it. I shall be walking to wherever I need to be.
My appointment is 12:20 on Wednesday. My oncologist, Rachel, is really lovely and I know she'll give me good advice to start my crusade. I've been a UK tax payer and have paid my NI contributions for over 42 years. I don't see why I should put up with a shorter life expectancy than I would expect if I lived elsewhere in the UK.
Hopefully I speak out for all women with ovarian cancer who receive their treatment within the devolved administrations.
Thanks for this Annie. I will have a look and see what's available, and relevant, to my particular case - if anything. Good luck with your appointment on Wed. I have my appointment at 10.50 when I should find out what my plan of action is too.
If you find it a bit turgid wading through all the clinical trials ring Target and ask if you can speak to their research manager. He works part-time but he understands all the trials. I would never have spotted one that I shall be printing out and taking along to Rachel Wednesday had it not been for them mentioning it. I hadn't made the connection to my own situation.
The trials to offer second surgery after first relapse interests me. It might be worth your looking up that one in case you qualify and it's appropriate for you.
I've been thinking a lot about you since you posted up the blog saying you had some regrets about surgery. I really do think you made the right decision. It was clearly needed. It's just upsetting and frightening when the beast won't stay down. Let's hope the next phase of treatment will sort that out and give you a break.
If anyone can rattle the cage and start to change this horrible inequality Annie, it is someone like you. All out thoughts will be with you on Wednesday. Love a bit of blue sky, lateral and creative thinking. Not enough doctors will do anything but go down the same old paths, all of which are slightly guesswork based routes since they never know what will work.
Thanks so much for posting and thank you for all the hard work you do for yourself and others in the fight for equal and best healthcare. Hope all goes well with appt
Hi Annie, wish you all the best with your appointment. It's wrong you having to do all the hard work to get the treatments you need. The health system should be the same all over the uk. Think they will be battling a very determined lady lol. Good luck and all the best Annie. Love keli xx
The Target Ovarian Cancer database still doesn't have the trial I was on last year BMN673 nor the trial I am on now 6MP. Both are still actuve. It also would be good if you could search the database by other facets rather than just miles from postcode.
If you want to see all the trials available check out clinicaltrials.gov
I have emailed Target Ovarian Cancer to query this.
I am not saying this to be critical but I don't want anyone to miss out on a treatment that may be beneficial to them because they assume that is all that is on offer...
Dear Sharon, This is such helpful feedback. I've emailed Frances Reid who's my contact at Target to query the missing clinical trials.
I rather agree with you about postcode. I've waded through all the trials listed but found it didn't take too long but boredom did set in so I would have missed the one trial I might be eligible for as it appeared near the end of the list.
The .gov website you mention is really good. Really helpful as I'm currently researching what trials are available for my second line of chemotherapy.
I tried for 6MP (BRCA2+)but did not have any one nodule that measured 1.1cm, although there were numerous areas of disease visible on a ct scan and my ca125 was elevated, a good marker for me.. This has excluded me from several trials as it appears to be the way I recur as I have PPC. I feel this is another area that needs to be evaluated. The ct scan is used to monitor my progress. Other parameters should be considered to be fair.
Hope you will be very successful and Thursday' scan is good.
I see it as in our "job description" to share this info far and wide, along with other resources. Shame we have to though... A database of anything is only as good as the info put in, and tips there are just a few organisations with depth of knowledge a single central resource would make so much more sense than the various different ones. It worries me that each time any organisation gathers info together, with the best of intentions, it is necessarily incomplete. Meaning one harps to search multiple times, still.
I found out quite a bit here when I was searching: cancerresearchuk.org/cancer... is a similar searchable trial database from Cancer Research UK... The clinicaltrials.gov is a US site so, though it will have some relevance to trials here, it won't be a complete crossover. CR UK I would hope to be a complete overview, and it is sad if TOC one is not even complete for OC trials.
Whippit, Many thanks for posting this. We need information like this, as Sharon has said it does not seem to have several trials I have looked at but at least we can contact them and ask.
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