Advice needed please

I’ve just returned from hospital armed with loads of information on chemotherapy. I’ll be starting on the 20th August and now need to choose which treatment I would like. I’ve read the information once through but can’t see what difference any treatment would make. First I have to decide whether I will take part in the TACT 2 trial and am dubious about that as I won’t be able to choose which option to take. If not that, then I have the choice of either FEC or Epi-CMF. From the information I’ve been given I can’t see what to make a judgement on. They all treat the cancer and they all have the same potential side-effects. The only difference I can see is the the FEC treatment would be finished sooner that the Epi-CMF.
Does anyone have any advice for me?

Hi valentine

I am sure our forum members will be coming in soon with good advice. From what you say you have been given a lot to take in at one time! Why don’t you give our helpline a ring. It is on 0808 800 6000 and open Monday -Friday, 9am - 5pm and Saturday, 9am - 2pm

It is a free and confidential service. The experienced nurses and specially trained workers there will talk you through your options step by step and explain what if going on.

Hope this helps

Ann

Hi Valentine,

I’m sorry you’ve had to join us here but you’ve defo come to the right place for advice and support! I was diagnosed with bc in March last year, age 34. I had a right mastectomy and total axillary node clearance a week after diagnosis and I had chemo from May til Oct.

The chemo I received was E-CMF and I did agree to take part in the TACT 2 trial. As you correctly say the trial is totally random and the ‘arm’ you go on is selected by a computer at the Marsden. I was put on Arm 2 of the trial, which meant I had accelerated Epi followed by standard CMF. Treatment time bein 5 1/2 months in total.

Personally I was ( and still am) very glad I took part in the trial. I was extremely well looked after during chemo, and also since I finished. You are monitored very closely throughout by trials nurses, mine were awesome. Even now I have regular check ups and they are always at the end of the phone when I need them. I was happy with the arm that I was on as I felt it was the tried and tested regime, just made a little shorter. That said, I would have been equally happy with being on arm’s 3 and 4 as it meant that after the epi the chemo would switch to tablets rather than infusions. What I liked about the trial (apart from the excellant care), was the fact I knew I could opt out at any time if I changed my mind. Also, I’m all for cancer research and helping improve cancer treatments and feel I’ve done my bit (however small).

Unlike you I was never given the option of what chemo I could have. Not sure whether thats a good or bad thing, but given I knew little about chemo prior to starting I reckon its not so bad that that decision was taken from me. I know only a little about FEC but I’ve no doubt fellow forum users will be able to help you out there,

Take care and be sure to let us know what you decide to go for,

I wish you well as you prepare to start treatment,

Kelly
-x-

Hi Valentine

Have you done a ‘search’ on the trial and FEC? There’s loads (and loads!) of experience on the posts relating to them. There are ladies still going through the trial and others, like me, on FEC. You may come up with some questions you can ask your onc that will make your mind up for you. The posts on here definitely helped me with any decisions I had to make as there’s more women on here in the same situation than you’d meet ‘normally’. Once you know what you’re doing use this site for support, advice, whinging - it’s what’s helped me over the last few months!

Nicky x

Hi Valentine,
Gosh…I’m not sure what I would have done if I’d been given so many chemo options!! I’m due to start 6 X FEC on 21 August…I wasn’t given a choice.
My Mum, however, was offered a trial last year and as Kelly says there are advantages in being on a trial in terms of the amount of monitoring you get. If I’d been offered a trial I think I would have gone for it as, as far as I understand, the treatment should be at least as effective as standard treatments but there’s the added reassurance of more frequent contact with your medical team not only now but for some time to come in the future. The only downside I could see was the number of visits to the hospital…
Hope you can come to decision you’re happy with though,
Love 'n hugs,
Sarahxx

Hi Valentine,

I’m on 4xFEC and 4xTAX, no trial options were given to me. Everybody reacts individually, but I personally “bounced” through the FEC (working between doses, little or no side effects apart from hair loss!), but am finding the TAX harder in that I have to take a week off work because of pain and my red cell count low etc so I have little energy for walking etc. Fortunately you don’t seem to be on TAX no matter which option you take.

I just wanted to point out that you will get a lot of support from the nurses/doctors etc REGARDLESS of which option you choose.

All the best to you throughout your treatment and we may see you on here again - it’s a fantastic resource!
Sue xx

Hi,
I am half way through my chemo treatment and I am on the TACT2 trial. I got arm one which is epi and cmf and the longest one. It was also the one I really did not want to have because of the time it would take. I dreamt I got arm 3 and thought it was a premonition.LOL. If I tell you how I decided then you can follow my thoughts and it may or may not help you come to your own decision. I read up about trials and was really keen to do something to try to help their research against this b disease. I thought it would at least bring something positive out of my months in treatment and mentally helped me as I have 3 daughters who I have now thrown into the firing line. The I looked at the trial itself, a phase 3 trial like this is leading on from many years of stats and so not a risky one (just my opinions here). The phase one and two were very successful and now they are fine tuning the increasing of survivability and improving side effects for patients. Finally they had been recruiting since 2005 so I felt if there had been problems they would have emerged by now. Added bonus of arm 3 and 4 being the latest drug and having tablets at home. Accelerated arms were injections, which was a big minus for me but shorter in time a big plus. In the end I decided to go on the trial but was told I could pull out when I heard which I got if I wanted. Got arm 3, disappointed and then had a decision to make 6 x FEC or 4 x epi and 4X CMF. Had a chat with the reserach nurse who said every arm has to be at least as good as standard in any trial and that the onc had been tracking the trial and he was very keen on this one because of the higher dose of epi. I was also told I could pull out after number 6 if I wanted and that would still be fine. That is the point I am at now with a meeting next week with him as about to start CMF. In the end I decided fate had sent me that one and a bit like Deal no deal, I stuck with my box!!!
Plus side I have this delusional idea that fate has taken a hand? I am repaying all the ladies before me who went on trials to give me the 85% figures of success they quote nowadays. Doing my bit for the next generation. Practically I get my own brilliant nurse, lots of tlc whenever I call, all my drugs free for anti-sickness, etc (varies with areas but if not on the trial I would pay and would need a £28 pre pay subscription every 3 months) and will be seen much more often for future tests. The research nurse is absolutely worth her weight in gold and will be a friend to call for years to come. 8 treatments instead of 6 so more chemo to zap everything.
Minus side I am now having 8 treatments instead of 6 and getting cheesed off. I will be off work 10 months total by the time I get through rads, so financially worse off. The CMF are doubles so the last 4 are actually 8 more visits. I have not started that yet so can’t quantify how it will go.
Sorry it was so long and good luck, keep us posted. Be sure whichever you choose you will find amazing support on here and friends to travel this route in and out of chemo. The best part of all
Lily x