Hello all. I am a new user and due to start chemo (E-CMF) next Friday. I have been invited to take part in the TACT 2 trial, and would be interested to hear from others about their experience on it.
I wondered what is your experience of having chemo every two weeks - does it mean that you don’t get a proper chance to recover before you have to go back for more?
And is there any information about the efficacy of Xeloda compared with CMF?
Thanks!
Carol
Hi Carol,
I’m on the second arm of the tact2 trial- accelerated epi and then 4 CMF
I’m now almost half way through my CMF.
the accelerated EPI was OK - I had far more good days than bad days and felt almost back to normal before the next visit.
I’m now on CMF and get a dose day 1 then day 8 and nothing for 3 weeks - this to me after accelerated epi is a pain in the ar*e as I want it finished quicker!!! i found that I was actually back to normal prior to going to the 2nd CMF but then I had to really push myself to go for more treatment as I didn’t want to feel yuck again - so give me accelerated treatments any time
with any trial they tend to look after you more as they need all details on how you have been throughtout the treatments
Good luck for Friday
Hi Carol
I’m on arm 3, so not having the accelerated epi, but have only had one treatment so far so can’t help much with whether it is better 3 weekly or 2 weekly. (personally feel glad I have time to feel well before going back for more!)
I will have Xeloda, and understand it is tolerated better than the epi - so fine with me… but not sure if there are figures about efficacy.
I agree with kelyn, the good thing about trials is you get a trial nurse to liase with, so you get more individual care.
Hope Friday goes ok. Let us know how you get on.
Sunny
Hi Carol,
I’m on arm 3 of the trial like Sunny. Epi was not too bad, nowhere near as bad as I thought it would be. Have finished Xeloda and usually felt fine through most of the tablets. Got tired and a bit nauseaus but sleep and anti nausea pills helped a lot. The attention you get from the trial team is brilliant. You will feel very well looked after. I understand that Xeloda has had good results in USA in treatment of advanced bc -they now want to check out its effectiveness in dealing with the early stage.
Due to start rads next Monday and then on Nolvadex- looking back on things,time has passed really quickly for me - I’m sure it will for you too.
Janeyb
Hi Carol,
I am on arm 2 of the TACT 2 trial, the same as Kelyn. I have just completed 4 accelerated Epi and am due to start CMF on Weds. The acc epi really was nowhere near as bad as I had imagined it to be. The inj you have 24 hrs after each epi is pretty un-problematic too, and I really believe that this is the reason I felt so ‘well’ most of the time. Don’t get me wrong, I did have days where I didn’t feel well but my good days definately outweighed my bad. I am hoping to have a similar experience on CMF, fingers crossed!!
As Kelyn says, when you take part in a trial they keep a really close eye on you and I like that. I always see my trials nurse before each chemo and she is always on the end of the phone should I need her in between.
Don’t forget, if you do sign up you are free to ‘opt out’ at anytime.
Take care and I wish you well for next Friday,
Let us know how you get on and what you decide,
Kelly
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Thanks for all comments, they were very helpful. After talking it through with the medics, I decided to go with the trial and signed up today. I’ve been to allocated arm 4, so it’s into the unknown from Friday!
Have been rifling my cupboards for hats and practising my scarf tying technique, which is rubbish.
Any other tips??
Carol
I’m another on the TACT2 trail… the 3rd arm, so 4 x Epi and 4 x Xeloda… The way I looked at it, I had a 3 in 4 chance of reducing the length of time the chemo would last (standard treatment was 28 weeks, 2 arms were 2 weeks and 1 was only 20 weeks)… the sooner this c**p is over the better!!!
I’ve had two sessions of chemo so far… only a few hours of sickness after the first dose, but the second one hit me harder. I’m to meet the doctor before next week’s 3rd chemo, to change the anti-sickness tablets. I haven’t had any contact with the oncologist since she originally told me about the trial, haven’t met the bc nurse since before treatment, but can phone if I want any advice. Reading some of the threads, it seems that care / support varies a lot between different hospitals. I’ve only seen the nurses that administer the chemo when I’m at the hospital… 'though I’m sure that if I asked to see someone, it wouldn’t be a problem.
AliS
AliS,
I’m like you, I don’t get to see my onc. I saw him once before I started then again when I was half way through the chemo. My BC nurse is available should i wish to contact her. The only people I see each time is firstly the Tact2 Trial nurse then the actaully nurse who gives the chemo and that’s it for me apart from the lovely red cross ladies that treat me like a VIP!!!
Hi Carol,
just wanted to wish you well for your first chemo tomorrow. As I said before I am also on TACT2 but am on arm 2 so unlike your ‘lucky’ (for want of a better word!) self I have to have 12 infusions rather than just the 4 Epi (boo!!!). Its great that you signed up, you’ll be well taken care of I’m sure.
I finished Epi a couple of weeks ago and all told found it really to be not too bad at all. The 3rd was the worst one for me, not really sure why but many others have said that too! I have now progressed onto the CMF part and had my first one yesterday.
Like Ali and Kelyn I haven’t actually seen my oncologist since my initial appt to discuss and plan my treatment. I have regular contact with my bc nurse though and obviously the trials nurses and chemo nurses. I know I can see my onc anytime I feel the need but so far I haven’t needed to. Apparently I will be seeing him mid-way through CMF to discuss rads and Herceptin.
All the best for tomorrow, I really hope it goes well for you. I was terrified at my first chemo session and to be honest I was also scared sh*tless yesterday when I went for my first CMF. I really needn’t have worried though!
Take care and be sure to let us know how you get on,
Kelly
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