Were you offered the opportunity to participate... - My Ovacome
Were you offered the opportunity to participate in a clinical trial as part of your treatment?
JackOvacome163 VotersPlease select one:
I asked if I could become part of clinical trials and was told that this isn't a patient option and if a research team is interested in my case they will contact me. I noted that many women on this site are part of clinical trials at the Royal Marsden and it worries me that I might not be considered as I live in Wales.
Would love to go on a trial but have never been asked in the 5yrs of my cancer as I live in Liverpool and supposed to have great cancer hospitals within bus/train travel do you know of any for patients to go on a trial ?
Hi Marjorie - I too live in Liverpool and am undergoing 2nd line chemo. My Onc is based at Clatterbridge, where I had my 1st chemo sessions, but I now attend the Women's Hospital in Liverpool as they now have a chemo suite (which is a lot easier than having to travel to Clatterbridge). I'm also taking part in a trial, ICON6, which was suggested to me when I found out I'd have to have chemo again. There are a number of trials being run by Clatterbridge but not everyone is suitable. For instance I was eligible for the ICON6 trial as (a) my OC had recurred; (b) it was confined to my lymph nodes; and (c) I would be having a combination of carbo/gem. Are you having treatment at the moment, or are you waiting to have any further treatment? If so you should ask if there are any trials available that would be suitable to your specific diagnosis. But on the downside - there can be additional side effects and you do not know if you are getting the REAL drug or a placebo. Take care xxxxxx
Hi Fitzy yes I used to go to Clatterbridge but go to the Womens now was there last Wed who is your Onc mine is Sue Lord I have two more Chemos to get which is Caelyx its every 4 wks
This is my 5th go at the chemos had Carboplatin 3 times Taxol once now Caelyx this has been the worst so hope its the last
Marge xx
Hi Marge - I'm under Dr Lord too and was at the women's last week also, but on Tuesday. Only the trial patients come in on the Tuesday, otherwise I would probably have met you on the Wed. I've not been too good this week, lots of nausea and diarrhoea and I've got 4 more sessions to go. Hope the rest of your treatment goes ok. Good luck. xxxxxx
Hi I was in hospital Womens on the 16th Nov for 8 days went in because of vomiting and consipationt they say it was a blockage in upper bowel seem to be ok now but still being sick trying to eat little and often gone from a size 16 to a 12 so had to go and buy all new trousers all in a few months good luck with your treatment xx
I was offered 3 seperate trials, and refused all of them as they involved either deferring my surgery, or elongating my time in chemotherapy; and I just wanted to get the cancer cut out, take the medicine, and get out of there! Also, the possible side effects (causing the operating scar to re-open, etc.)did not appeal to me; and nor did sitting for a couple more hours possibly being given a placebo.
I might consider trials more carefully should I have a recurrence.
My comments are identical to yours Isadora.I felt a clinical trial was not for me for exactly the same reasons as you and a trial would take 48 plus weeks!!!. Too many downsides for me .Who knows though I might reconsider if there was the choice again due to a recurrance.Never say never......
Suzieque xxx
I've taken part in two trials out of three courses and the onc. who looked after me on my first chemo, which was a trial and who runs a trials unit, has continued with my care despite my recently completed course being standard treatment. He's very knowledgable about drug trials and is constantly seeking new treatments Neither of the the trials has in any way compromised my treatment and has in fact enhaned it.
The specialiset trials unit is very well staffed in comparison to the usual chemo suite and is funded through Cancer Research UK and the drugs companies. On a trial you always have a 1:1 trials nurse to look after you and arrange everything so the support is constant and very professional. Trials are always highly monitored, scans, blood tests, clinics etc. so there is frequent feedback on how things are going.
I can't speak highly enough of the care I've received through the trials unit at my hospital and wouldn't hesitate to do it again. The downside if there is one is that there is often more frequent attendance than usual but I consider it a small inconvenience for the advantages. In fact one trial even paid mileage as well as the usual parking fees. And of course there's always the chance that one of the trials will be the one to come up with the cure.
All that aside, and without wishing to sound pious, I've got this disease and unless the trials go ahead women in the future will be in the same boat as me and thousands of others still looking for a cure. Meryl
P. S. to my just posted comment. There are three types of trial. Phase 1 which are only given to a very small number of women who have no other option. Phase II which, if phase 1 shows some promise is given to a specific number of women and everybody gets the drug, and Phase III and you don't know if your getting the trial drug or not.
I was asked to consider a trial drug when my stage 3c cancer returned within 5 months.It was known as the ET...something trial ,using a new drug combined with caelyx.Its been over four years since my treatment and my tumours remain dormant.
I was offered a trial of Avastin and Cyclophosmide almost 3 years ago. I jumped at it as I was given months to live and have never regretted it. I know there are risks with trials, but Ovarian cancer is a b....r to beat so I say throw all you can at it, I am going to keep going as long as possible.
I think if you want to go on trails, you have to web search and push and even travel if it means going that bit further to get the treatment we all need. Of course all hospitals don't run trials. The ones I was on were only run out of Malaga, Salamanca and Madrid, so I was very lucky to live 1 and 1/2 hours drive away from Malaga. I go to Malaga which is a University hospital and my Oncologist is a research scientist at the nearby University - so I am lucky in that respect. If I were to go to a hospital within my province of Cadiz where I live, I doubt I would be getting the excellent treatment I am getting now.
Obviously you also have to be the right candidate for specific trials.
Anna xx
I didn't get any opportunity to participate in a clinical tria as part of my traeatment but I have been offered the opportunity to participate in a clinical trial in the future when the trial for ovarian cancer patients will start in the future.
Gosia xxx
I was ofered and accepted for a trial post surgery in 2007 then just before I started the treatment the trial was closed early. I have had 5 chemotherapy regimes since and never been offered a trial.
Sue
I asked about trials but was told that as I had had breast cancer I wouldn't be considered
I was offered a place on a trial but unfortunately by the time I was referred it was too long after my surgery. I was very keen to be involved in it - more for the enhanced follow up than the possibility of the treatment being better as I have mucinous cancer which is even more likely to recur than the rest. (I had to smile there - the Chrome spell checker thinks it should be 'mutinous' which seems quite appropriate!)
I was on the Icon 6 trial but became alergic to carboplatin so was taken off! A shame as it was working! Cisplatin was ineffective but the tumour was operable! That was 10 months ago! I suspect that it is returning as I have symptoms again!
I like your 'mutinous' cancer! I don't know what kind mine is but it is certainly 'mutinous' as I seem to get about 9 months of remission!
Margaret
