help i have put so many threads on here re this but get no replies. i cant understand why. apparently this trial started in 2005 and is going on to 2011 or until they get 4000 people. i was going to do it but having second thoughts now as no one else seems to be doing it and its put me off. apparently with trials you get More follow ups and with this one follow up for longer so that’s good isn’t it. the dose is exactly same whatever arm of trial you get… the only difference is you do it over 6 months instead of a year. of course you don’t know which time you will be given till computer selects. my research nurse said i could also come off trial at any time so if got selected for 6 months then decided wanted more i could come off and have another 6 months normally. i am sure they wouldn’t want us all to do that or no point in trial. any views ideas anyone as i have to make my decision by Fri 11th. have a gt day all.
Hi jal7777
Please don’t be put off by lack of replies. It may be that the rest of us don’t know much about it or has been offered it.
Do what your consience tells you and what is right for you.
As a family we have taken part in trials for diabetes (2 children with diabetes) but it didn’t include taking any drugs, but it could have done if we were the right type!
Maybe your research nurse could put you in touch with someone all ready on it so that you can discuss it, it should be part of her job! That would be helpful. Also ask as many questions as you need to, if you’ve been through bc that shouldn’t be a problem.
Good luck and let me know what you’ve decided.
thank you for your advice i will ask nurse about others. i am also going to ask y would people refuse it… take care and thanks
I would have replied hon but have never heard of it!
I am waiting for my histologies - liver biopsy and HER 2 results.
When I last spoke to the secretary she asked if I had been asked about the … trial. Because I had not I did not register the name of it - maybe it was this one?
What does it involve?
Hi Jal7777
I think there are loads of benefits by being involved in trials particularly in relation to having access to new drugs and being followed up. However, we each need to be comfortable with our decisions.
Like you, I’ve been offered the Persephone Trial as well as the ALTTO Trial. I have to decide between the two trials or no trial at all. It’s really taxing my head trying to work out what is best for me.
I’m currently benefiting from the TACT 2 Trial which in my opinion was a good decision to participate in … having to now make another decision is hard work.
I don’t start the antidote to HER2 til the Autumn so have time to play with but am leaning more towards the Persephone Trial at the moment - my mind could easily be changed.
I’m concerned about the ALTTO Trial and the use of Tykerb - I’m not sure I can cope with the potential side effects should I be given any of the arms that includes this drug. I need to be able to function well in my job and therefore can’t play around with drugs I have so little information about. Having said that, I shall be meeting one of the doctors who runs the trial at my local hospital next week.
The Persephone Trial seems more likely - my question is about the advantages/disadvantages of Herceptin for a year or 6 months (the pojnt of the trial). We have info about the benefits of Herceptin and a Finnish study has thrown up the possibility of shorter treatment ie. 9 weeks. Do I want to take the risk of getting the 6 months arm? Possibly. When put against toxicity and the heart … I could be interested in this one.
I have no medical knowledge at all - like anyone I’m just trying to work out what feels right. To me at the moment the Persephone Trial is something I’ll consider seriously.
I hope I’m making sense!
Gill
Hi Gill
You sound just like me and the longer it goes on i still cant decide. One thing is bothering me is no one seems to be doing it… i cant work our why. Its the same dose of herceptin and more follow ups. The only difference is the time 6 months or a year… they must have done some trial to even start to offer this as option. I need my heart. I have no problems that i know of…
I hate hospitals and to be honest a year of it is frightening. first i wasn’t going to do it and was keeping in back of mind if i can do 6 months herceptin i would be same as trials so wouldn’t feel so bad if stopped. My aim is to get 6 months over wit,. then i said this to research nurse and she said even on a year i could come off trials no one will think bad about it as some have to stop for other reasons. Then i said i want to do year if i can (doubt it though ) she said well if i got 6 month arm and wanted to carry on i would just come off trial and carry on. So now i cant see any reason not to do it. BUT again it worries me as said before no one else doing it or even seem to have heard of it. its supposed to be going since 2005 and will continue till 2011. Where abouts in country are you and whats your dx if you don’t mind.
Have a gt day its wet and chilly here in bedfordshire. I hope you understand this.
Julie
Hi Julie
I hadn’t realised that the Persephone Trial had been running that long. I do know that several hospitals have only recently ie. this year, signed up to it. That I believe includes my own area. When I’m at the hospital next week I shall ask about take up etc.
I did ask last time about being disadvantaged ie. if they found something out that suggested 6 months was not a good idea - I was reassured that I would then receive Herceptin for a year. Obviously it’s a random choice as to who gets which arm of the trial but like you, I do think 6 months sounds more appealing providing it works which is the key here!!
I’m under the Brighton & Hove PCT.
Take care
Gill
ok so how long is it going to take to find out whether you would be at a disadvantage. you may have finished the trial so what happens then. its all so confusing. i am actually having all this treatment as extra insurance so to speak but as i cut chemo short i think i would like to do 12 months but deep down know i want be able to cope with hospital visits etc.
please stay in touch
when have you got to decide when to do it or not… i have to give my decision on 11th. i was asked when it would start and the research nurse told me it has to start within 28 days of heart scan for the trials. it would be nice to know of someone else doing it as well we can compare hospitals and may have differnt q to ask etc . well thats if you decide to do it. i think i will just got a few q to ask again on friday.
take care
julie
Hi Julie
I take your point about knowing whether or not we’ve been disadvantaged and I guess there’s no answer to that. It’s a risk, but then again with the trial being Phase 3, the risks are known. I would love for 6 months to work but of course none of us know how effective this will be. Then again, the choice of 1 year for treatment has been random too - nobody has an accurate answer for any of this.
I’m still on chemo at the moment and won’t finish til mid August. I will be making my decisions before then but won’t be starting til the Autumn. I want a reasonable break between the chemo and the next treatment.
I guess you’ll be way ahead of me so I won’t be able to keep you company … sorry! However, I am able to share questions with you etc.
I’m also still considering the ALTTO trial instead although I suspect I’ll be refusing that one. I shall wait til my meeting on Monday before I finally decide.
Take care
Gill
Hi, GillianG I have been to the Sussex County today for my first Epirubicin. took all day but goo din the end.
Having Groshong Line put in before next one.
Not heard my HER2 result yet seeing Simcock on 1st Aug for decision on drugs. Next chemo booked for 4th aug - unless herceptin and docaTaxol.
gill
Hi Gill
Nice to meet someone else at the same hospital! There’s also Paula43 who’s in the area. I too was at the Sussex County today when I picked up my next lot of chemo drugs - I’m on the TACT2 Trial and am now on my penultimate cycle. This part of my treatment is taking Xeloda orally everyday. I was at the hospital at 2.30 and didn’t leave til about 4.30 - also had a meeting about the next stage of my treatment ie. herceptin. We may well have passed each other! I’m also going to be there on 4 August for my final cycle and signing up officially for the Persephone Trial which I’ve decided to participate in.
The Epirubicin is doable and I hope you manage well on it. I had 4 cycles of epi - the last one was on 12 May. Since then my hair has started to grow and I have some furry fuzz all round my head!
I hope you manage things well over the next few days and that the Epi isn’t too bad.
Take care
Gill x