Following on from Nikki’s question about how to get on a drugs trial, I wonder when is the best time to go on a drugs trial. I realise that each trial has different critera for its intake, but I was wondering in more general terms.
I told my oncolosgist’s registrar at a recent check-up that I was interested in taking part in the PARP inhibitor trial, but he dismissed this giving the same reason as they have given for me not having chemo just yet; that the treatment could be worse than the disease at the present time. (Although I have active disease I am relatively symptom free.)
However there is another layer to the ‘delaying treatment’ argument and that is that they do not know how long I will remain platinum sensitive, but presume that I will become resistant at some point in the future. So, they don’t want to use platinum on me now, when I might really need it later on. So, to my mind this would be the perfect opportunity to go on a drug trial.
However this doctor pretty much suggested to me that you would only take part in a drug trial when nothing else was working, and I wanted to know if this is the case for those of you who are currently on drug trials.
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VickyEm
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I don't think they regard it as a last resort in Essex, where I sit on a couple of gynae/oncology groups. I would ring Ovacome helpline~ 0845 371 0554 ~ if I were you and talk over the options with those in the know. I would have gone for a trial if my treatment had warranted this (it didn't!)
Also have a look on the Ovacome website > about ovarian cancer > clinical trials. It may give you some more info. Apologies for STBO if you already tried this.
I think this probably very much depends on your oncologist. My understanding is that the ICON7 (Avastin with first line chemo) and ICON8 (weekly taxol vs conventional first line treatment) were first line chemo trials and so by definition could not have been when all else fails.
My oncologist seems to like to know there are some statistics, no matter how bad, for success and of course he says with trials there are none. He says, 'we like people to go on trials because that is how all new breakthroughs begin, but it may not be benefit you but rather those to come'.
Because this chemo I am STILL waiting for (Rotterdam Regime) is my last chance of chemo 'working' according to the London Professor, he said if you still wanted to try then I would just go on a trial.
Oh by the way, apparently the Rotterdam Regime only went to a phase II trial, a phase III was never done. London Professor says he does not know why, but there are not many trials that go the full course for those with platinum resistant or refractory disease.
I'm on a drugs trial and I had more or less exhausted all the standard treatments. As you say the criteria for entry differ depending on which trial you are interested in. If I were you I would trawl through the current trials (with a big cup of coffee next to you). Find out which trials accept women who are at your stage of treatment. Then you will have something definite to present to your oncologist.
I have been at the active disease but no symptoms stage and its difficult to just carry on life as normal.
so, what I am going to do now is find out a bit more about the parp trial, I did print out the information from the cancer research website and i appeared to qualify, but I shall see if there is any more information out there.
Then I shall take all the information to my next appointment and make them listen to me. Even if I don't qualify, I want to feel that they have considered it and not just said no without even looking at it.
Tweetings live chat blog also said this about trials:-
Q. How much interests do expects in this field show in clinical trials and what is your thought about how clinical trials are discussed with patients with Gynaecological cancers
A. We are highly focused on clinical trials here and discuss clinical trials and their rationale very transparently with pateints. Once patients understand they are usually keen to participate since they know that their treatment will be occuring very much at the cutting edge. At our centre, about 80 per cent of patients actively participate in some form of clinical trial or research study.
The Consultant is from: "Hammersmith Hospital, The Ovarian Cancer Action Research Centre at Hammersmith Hospital, run by Imperial College London and Imperial College Healthcare, it has the largest concentration of ovarian cancer researchers in Europe".
How funny Lizzie, I was just reading the other item you posted about the web chat. Hmm my dad used to work at Imperial College, wonder if he could pull some strings. Sadly, he was an engineer so its unlikely
Thinking maybe I should get a second opinion if my oncs won't play ball.
Factoid? Ooooo you Steve Wright fan you One of my worst experiences in this has been being force fed the old 80's DJ Mike Reed on a pair of headphones whilst having an MRI scan. It made me feel very poorly!
lol! They really should think about their music choices a bit more. I can remember once having to listen to bono from U2 singing 'I can't live.... with or without you' whilst having a pre-op mri scan.
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One of my worst experiences in this has been being force fed the old 80's DJ Mike Reed on a pair of headphones whilst having an MRI scan. It made me feel very poorly!
They really should think about their music choices a bit more. I can remember once having to listen to bono from U2 singing 'I can't live.... with or without you' whilst having a pre-op mri scan.
drug trials
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