Tact 2

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1

Hi,

My mum had a masectomy 4 weeks ago and all lymph nodes removed. She has been truly remarkable and is hard to believe the op was only 4 weeks ago. She had her first appointment with doctor to explain the chemo and give her until next Tuesday to decide if she wants the standard treatment or to go ahead with the tact 2 trial. I was with her and have read the information sheet. I would appreciate any advice as to what the best option would be… Initially I thought the trial but my mum and I swayed to the standard option and are still changing our minds. I know it is her decision and I will go with whatever she decides but just wondered if any one can shed some of their experience to help us along? Many thanks, Maree

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Hi Maree,

I am on the second leg of the Tact2 trial- accelerated epi then CMF. I’m finding the trail good and I’m glad i joined it. Before each chemo session i am seen by a nurse from the trail who checks upon everything - I feel that I am being more looked after due to the trial and this will go on for years as they need to check the results.

Originally I didn’t want to be part of it if I had to take the tablet form and joined knowing that I would have pulled out if that was the option I recieved - you can pull out of the trial at any time. I’m now 3/4 through my chemo and would welcome the tablets now as my arm veins are so painful were they put in the chemo and they are having problems locating veins to use each time.

the accelerated epi was great it really saved some time - I’m finding the CMF to drag a little

Good luck on your decision

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Hi Maree

I was on the Tact2 trial. I had the arm that involved 4xepi and 4xXeloda tablets.
I tolerated the epi quite well and also found the tablets not too hard to cope with.
The only real problem I had was the skin on my hands and feet thining and peeling a bit, with a couple of blisters on my feet. These cleared up quite quickly once I had finished the tablets.

Like Kelyn, I am glad I took part in the trial and as she said you can pull out at any time if you want to.

I took part because I felt if it helps someone else in the future it can only be a good thing. It is a very individual decision for everyone and I know how difficult it is to decide what to do, but best of luck to both of you whatever decision you make.

Love and take care
Thistle

4

Hi Maree,

I’m on the Tact 2 trial - normal Epirubicen followed by Capcitebine tablets. I have now finished chemo and will start rads in a week. I did not do too badly on the Epi and the tablets have been fine. I can recommend being in this trial - the standard of care is phenonmenal. I have been very well looked after throughout and the follow up is good too.
Kind regards
Janeyb

5

Hiya Maree,

I’m on TACT 2 and I’m on the same as Kelyn (she’s 1 cycle ahead of me so she’s my guinea pig! LOL!!), accelerated epi followed by standard CMF (arm 2). I knew right from the word go that I wanted to take part in the trial, although I was still given a few days to decide. The trial has been going on for quite some time now and is being carried out at 100 hospitals around the country. I figured that any ‘teething problems’ would’ve been well and truly ironed out by now so was happy I wasn’t entering into anything that may be detrimental to my progress/recovery.

Also, as Kelyn says, being on a trial means you get monitired v.v.closely. I see my research nurse before each chemo and she does a very thorough check on me and she’s always at the end of the phone if I need her in the meantime. The regular follow-up will continue for many years to come and that very reassurring to me. What also appealed was that I could ‘opt-out’ at anytime. The final selling point for me was that the trial is being funded by Cancer Research UK and I figured that if no one was willing to take part in these trials then we can never progress in finding cures or better treatments for these awful diseases,

I hope this helps you and your mum, even if only a little.

I wish you and your family well at this very difficult time. Take care and let us know what you decide to do,

Kelly
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Hi,

Thanks alot for sharing your experiences and thoughts with me, I will pass all this on to my mum and let you know what she decides. From what you are all saying the monitoring and standard of care on the trial sounds the best way to go and hopefully mum will agree.

Best wishes to you all with the rest of your treatment.

Thanks again.

7

Hi

Just to let you all know that mum decided to go with the trial and she has been assigned the accelarated epi followed by Capcitebine tablets due to start on Tuesday 17th July. The district nurse is going to come to my mums house the day before each treatment to check blood count and the day after the treatment to be given the injection so we are so pleased with the care so far. I hope everyone elses treatment is going fine and if there is anyone out there already on this arm of treatment and you have any advice it would be greatly appreciated.
Thanks
Maree

PS Thanks also for the info reg places to go for wigs in my other post - we are going to Turveys in Edinburgh at the weekend.

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Hi Maree,

I’m really pleased to hear your mum has decided to go for the trial. I have found it to be really good and I am glad of the extra ‘attention’ I receive (if you get what I mean!).

I’m sure your mum won’t look back once she starts and I’m confident she certainly won’t regret her decision.

Best of luck to your mum for the 17th, and happy wig shopping!!

Take care and keep us posted,

Kelly
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