Its all so confusing, the not knowing if you are receiving it or not. From reading the literature that we was given, mum would not be given anything less than the standard treatment so we are kind of under the impression to go for the trial because it may benefit her in the long run ......... My head is baffled !!
Thanks for everyones comments
Jenna x x x x
I am posting from my personal experience. I have participated in two clinical trials. One of these was for a drug so new that it only has a code number... but I *WAS* given verbal and written information about the (known) side effects of the new drug.
I agree with the poster that said check what your mum will be offered. Some trials are to see if a dose could be reduced or stopped altogther. Some trials are to see if extra is better. Only the research people can and should answer your questions. Check the minimum that your mum will be offered if she if happy with that and still wants to go on the trial go for it.
I was offered the chance to go on the herceptin trial (to test 6 months against 12 months) you do not know which you will be offered it could be 6months or 12 months. I thought about it but turned it down, not convinced 6 is as good as 12 and did not want to look back later if I had been on the 6 months and wish I had gone for 12 months. I know that is being a wimp, but I am glad I chose 12 months (only 2 to go) and I know I have thrown overything possible at it and I could do no more.
It is admirable to join trials, but do check that you are happy with the both the mimimum and maximum treatment your mum will get.
It would depend on what the trial is? I have only done one-for PARP inhibitors. But was given no treatment alongside of it-otherwise, how could they measure it's effectiveness? It also necessitated a month free of any treatment prior to commencing-and I must admit, this was pretty nerve wracking. I was ok emotionally whilst on the trial, as the additional monitoring meant that any problems/progression woyld be quickly picked up. But the month beforehand which covered the wash out period was prety awful-I'm usually quite pragmatic, but every twinge had me panicking. So, I would also suggest you consider how your Mum would deal with this kind of pressure. If there are still other treatment options, she may be as well to dealy a while.
I would also suggest that you go for the trail. I was offered and took part in 4 - two of these were not treatment (eg a questionnaire on how I was coping) and two were. In one of these I got on the trial wing, and on the other was on the non trial wing, but as Cromercrab says, I never got less that the standard treatment, and in one case was lucky enough to have more.
I didn't regret doing these, as at the very least I felt somewhere down the line it might help future patients, and there was no disadvantage to me, except for more frequent visits for check ups etc.
As cromercrab says, you should be able to find out what the control group is having to make sure your mum is satisfied with that as a minimum. But I suspect she wouldn't be told the potential se's of the trial drug, as that would tend to skew results. The additional monitoring with trials can be an advantage though.
It would also depend on the type of trial - is the active arm of the trial having the same as the control group plus another drug, or a drug instead of what the control group is having - in which case you risk a worse outcome. It's a very difficult decision to take, and if I were taking it, I would start by looking at the effectiveness of the current best option for your mum's particular situation, and deciding if the odds are good or bad enough to gamble on an unknown treatment.
Good luck - I hope it goes well whatever you decide. xx
Go for the trial, due to ethics she will get the standard treatment and the extra(or not) will be the study bit. The downside is that she will have to have tests before hand to establish baselines, and she may well have to attend more clinics as part of monitoring. She should ask exactly what the trail invovles and whether if she was selected as one of the ones to get the 'extra' wheter it would be worth it and what Ses might be involved
hope that helps
ps, my onc is very proactive. I was dx with bone mets at same time as primary. he tried me one hormone which didnt work and the put me on FEc for 6 cycles, he is treating me aggressively not palliativly. he is now giving me weekly tax and herceptin(x 18) since it is as effective as 3 weekly but not so grim re SEs. I think he is experimenting on me as he said at one consult that he thought i was an interesting case.........Also he is hoping to shrink my primary tumour to give me an mx. I feel very fortunate!
Im confused does anyone have any opinions on trial studies? Blind trials so you don't actually know if your getting the trial or not?
I need some help on what others think from experience
Jenna x x x