tact 2 trial v's normal Chemo

Hi all,

I am about to start Chemo (in two weeks) I have been offered the trial. It looks good (like I have a choice of having Chemo). My question is what is the time difference from the trial to Normal Chemo. The form shows arm one taking 28 wks and arm 4 20wks. 28 weeks seems like a long time. how long is chemo normally???

I am really considering the trial, if it helps someone later on then it has to be good. I know I will get the same drugs so its just how they give them/how often.

thanks ladies and gents!!!

Hi snotrags… I am on the trial and I spent a while thinking it over only to realise a couple of points eventually that maybe useful to you. Because you are randomly allocated there aren’t any choices to be made other than to stick with standard treatment which is 4 lots of Epi (12 weeks) and then the 4 CMF’s which take a further 16 weeks I think ( please correct me anyone if I haven’t got that right). and taking a punt on the trial options. My reservation regarding the trial were ironed out when i realised that if the arm i got did not suit then i could always drop out. Obviously this is not discussed as an option directly and isn’t encouraged but all trials are designed so that you can drop out and receive standard treatment if you wish ( ethics relating to trial participation) . Therefore if there is an arm of the trial that appeals go for it in case you are lucky enough to get it. In my case I wanted the tablet form of chemo for the second half and got that. Given that my veins are hurting, the thought of only one more IV chemo to go before i swap to tablets is good. Personally i was worried about the speeded up EPI arm of the trial as i was worried that I wouldn’t cope without a break each cycle, but as Iv said I reassured myself that if it didn’t suit I had the option to drop out. Hope this helps.
Good luck with the decision.
xx carmel

Hi,
I took part in tact 2 and was on arm 3 - same i think as carmel - 4 epi and 4 lots of xeloda. whichever arm you are allocated - please just think of it as helping people who will come after us. as carmel says - if the treatment does not suit you can say so and go back to trad treatment. I was fine on the xeloda - watch that hair come back!

i liked my arm because i went back to work (LOL VVVVV part time duirng epi) and it is an arm which means fewest hosp visits, best of luck snotty!

Jen x

thanks ladies.

Its just with no experience of this to measure it against so to speak I had no idea what “normal” would be.

Jen - how did you cope going back to work?- I am really wanting to be working, hubby trying to wrap me up in cotton wool and me being stuborn really trying to keep my life as much as possible. I might consult with my GP on this as she is a reasonable woman and would give an honest answer.
How do you cope with infection risk?

thanks again.

Vicky.

Jen, sorry to hyjack snotty’s discussion but i haven’t read much about the tablet chemo. How were you on it? Do you think I might feel a bit more normal, eg be able to book a holiday? xx carmel.

Hi

Vicky I too was allocated arm 4 of the tact 2 trial and am collecting my last xeloda tablets this week. This arm absolutely flies. It doesn’t seem 2 minutes since I was in a state waiting for my first epi. Everyone reacts differently so you’ll have to play it by ear with regards to returning to work. I returned just before my 4th epi on a part-time basis with very flexible hours, my employer has been great. At present I’m working about 5 hours a day although some days I feel as though I could work longer, but resist the temptation! I do need a nap in the afternoon otherwise I just feel nauseous so it’s not worth risking it. My oncologist gave me a letter of support for work. It was the right decision for me as I was climbing the walls at home and I needed something other than BC to think about.

Carmel - the tablets are great. My original dose was too high and I was feeling sick all the time but they reduced it and I’ve been great since as long as I take my anti-nausea tablets. So much more energy etc. Some ladies have gone abroad on their week off but be careful 'cos the effects are cumulative.

There are 2 threads - tact 2 - which you can join. The girls are all at different stages and at the end of the day we’re all here to help each other.

Good luck

Mal

P.S. Like Jen says my hair is growing again on xeloda. Another plus!

Mal

Thanks for that info Mal, Ill have a look at those threads for inspiration. xx

Hi snottrags,
I finished arm one, yes the 28 week trip on TACT2, 196 day one today- trumpets hooting hooray!!! Yes it was a long route but that meant I had loads of days of recovery and recovered time inbetween so this has not been an intense time. I would liken it to my 3rd baby’s birth in 1 hour 45 minutes of madness and lots of painkillers/ back ups and my friend’s 48 hour ultra gentle trip without raising a sweat and no drugs or pain. In other words there are swings and roundabouts to all options, which is why people will not try to say their way is best. Some just suit others and their lives better, so ultimately you will need to decide after good input like here. You also have to consider that the standard treatment is not the same in all areas. In my and many areas the standard treatment is 6 doses of FEC which takes 18 weeks so a really quick one. The E part is bad for hair and you keep that going right through so most likely to lose the lot. I am not sure whether standard epi/CMF and the trial epi/CMFare the same or not. I was told that the epi on the trial was beyond what I would get on FEC and that that was the drug that would do the business. At the end of 4 epis my onc said well you have done it now on that and the rest just pushes you higher. Two arms have the injections so it depends whether you have to drive to the unit, see your GP or do them yourself, so consider or ask about as it may mean more trips. The tablets mean more time at home and are the newest part so potentially good. It is xeloda tablets, which is the digestable form of the F in CMF known as 5FU when iv. It has different side effects from the CMF, so you might find one looks better for you. I really wanted arm3 and dreamt I got it (wrong !!) but my stomach has really caused me problems throughout and I now know I would not have coped with any more tablets. I have 3 daughters and am doing the trial for better % for them mainly but that is just a personal thing and you should never feel any obligation. I let the computer pick, got the one I least wanted, have come through it ok and the bonus of arm 1 and 2 is that you have 4 drugs and as yet no-one knows which drug will zap each tumour, so 4 chances. That is the good bit if you get one of them. Others will highlight the good bits of others for you. I thought I would turn the trial down if I got arm one and then got superstitious that fate had picked it ! Mad I know but that was my main reason.
Big hugs and peace on deciding with what you want. Ask away if I can help at all. Most of all once it is decided don’t look back at the others just believe and trust in yours
Love
Lily x

Hi,
forgot to add the incredible blessing of having your own nurse when you are on a trial, free drugs in some areas where you have to pay for them eg anti-sicknesss, steroids, mouthwash, etc (only drugs taken in the hospital are always free at present) and loads more check ups than people not on trials. My research nurse is amazing, I can call her or the team 24/7 about any worry and have in the middle of many Sunday nights. she meets me for every chemo visit and spends as much time as I want, brings all my drugs to me, speaks up for me if I need it and organises all my appointments through the different departments and treatments. My friend who is treated with me and not on a trial had a bill of £30 plus just on her first visit and has had one call throughout. It will vary in different areas though
Lily

Hi

I was told that arm 1 is the same as the standard treatment and that it had to be part of the trial so that the comparisons could be made properly. Im on arm 3 and I have managed to get therough the epi and am now in the Xeloda. I have had 2 sessions of Xeloda now and have so far not had to take any other medication for side effects. I am having to watch my hands as they are very dry, but I have never felt sick and only been bothered with diarrhoea on a couple of occasions. My energy is back although Im still a little tired. All in all Im so glad Im on the tablets… Its just so much easier. Hope this helps you make up your mind. Take care

Angela

Hi,
following on from Angela’s thread, it depends which area to what is standard treatment. In my area it would have been 6 x FEC so epi/cmf is not standard for us. It is a quick 18 weeker for FEC, so quicker than all the TACT2 trial regimes, I believe. The trial is 8 doses and I was told that the epi content is higher on the trial compared to the 6 FEC in our area. On a trial you will be followed more closely and have more checks over the next few years, depends if you like that idea or not. I have been plagued by tummy trouble so I don’t think I would have coped with tablets very well, although the at home bit sounded lovely and I had hoped for arm 3 or 4 when I went into it.
Tricky decision, good luck with it.
Lily x