Hi Everyone
I was diagnosed on 15 Jan and have had right mastectomy with lymphs. I have been asked whether I wish to take part in this trial and have been given literature that I cant really digest at the moment.Am seeing Onc on Tuesday for HER result and treatment plan (I assume)
I would really appreciate any advice or guidance.
My instinct at the moment is to go with the trial.
Thanks
Sarah
Dear Sarah
Welcome to the discussion forums, you can access recent threads on TACT2 trial which may be of interest whilst you await replies, just type TACT2 into the search facility at the top of the page and click on ‘topics’, this will allow you to read some useful discussions.
In addition Breast Cancer Care have published a Resource Pack, it has been designed for anyone newly diagnosed with information to help you better understand your diagnosis, test results and various treatments, it is available via the following link or by contacting the helpline: breastcancercare.org.uk//content.php?page_id=7514
I hope you find this of help
Best wishes
Katie
Hi Sarah,
I am 35 and was diagnosed last march. I also had a right mastectomy and total axillary clearance. I was given the opportunity to take part in the TACT 2 trial and I jumped at the chance.
I started chemo in may and finished in oct. I’m sure you know that there are 4 arms on the trial and the one you get put on is selected totally at random by a computer at the royal marsden. I was on arm 2 which was accelerated epi followed by standard cmf, lasting 5 1/2 months.
The care I received both during chemo and since I finished has been exceptional. The 'trials’or ‘research’ nurses monitor you closely throughout chemo and you continue to be followed up for many years. The trial has been going for some time already so I was confident that any ‘teething problems’ wold have been ironed out. Don’t forget, even if you decide to go for the trial you can still opt out at any time.
Personally I would say go for it! I am very glad that I was able to take part in such important research that will hopefully help so many others in the future. I wish you well as you make this decision and prepare to start chemo. Be sure to let us know what you decide,
Take care,
Kelly
-x-
Hi Sarah,
Sorry youve had to join us but you will recicve lots of help and support from all the lovely ladies here
I was on the Tact2 trial and was allocated arm 4 i finished chemo about 6 weeks ago. You will find lots of women on here have/are also on Tact2 .For me i felt that by going on the trial it may help future BC treatments . There are 4 arms to the trial and if you decide to sign up for it your details will be fed into a computer at the Royal Marsden and you will be randomly assigned to a group. I was pleased that i got arm 4 as it meant 4x Epi/4xXeloda accelerated every 2 weeks instead of every three ,the Xeloda is an oral chemo so that meant less problems with my veins. You will also get a trial nurse who will look after you .If you decide to go on the trial you will still be getting no less than the standard chemo treatment available and they will follow you for life to see how you are getting on .Chemo can be tough but as everyone here will tell you it is do-able and if you get any side effects there are lots of meds available to combat them . For me i was pleased i decided to go with the trial as i though we have the treatments what we have today because ladies before us did earlier trials, There is a long thread on here somewhere about Tact2 if you search Tact2 you should be able to find it. Good luck with whatever you decide and all the best.
Pleases let us know how you get on
Lots of Hugs
Lindiloox
Hi Ladies
I too have been asked if I would like to take part in the trial. I know that I would normally be getting arm 1 anyway for my chemo but to enter into this and possibly get the accelerated one is ok too. I just think that I would be getting the best possible care and the feeling that it can help for the future. My oncologist said don’t worry about the future outcome of this trial just think about yourself, which is true.!!
I am going to read through it all today and let them know.
For the ladies who have done it did you have to go for a body/bone scan first? Did you have extra tests throughout it and if so what were they?
Many Thanks
Paula x
Hi everyone,
I am just about to finish taking capecitibine on arm 4 of the TACT2 trial. Everyone has been really kind and helpful, and any side effects have been minor .
I think the big advantage is that everything is carefully monitored, and will continue to be so, and that there is an allocated trial nurse so that any questions or problems are easily sorted out. Also, whichever arm you are allocated is as good as, or possibly better than, the standard treatment, and I certainly found the oral part easier than IV, but even the IV wasn’t as bad as I anticipated!
Sarah, I hope your appointment goes well, it is difficult to digest all the information given to you, and I found it easier to deal with things one step at a time rather than trying to look at the whole picture in one go. There is lots of help here, so don’t hesitate to ask.
Paula, I didn’t have any scans etc, but did have a chest x ray before starting.The trial nurse was always present when I saw the oncologist, and asked about side effects etc. I did have a couple of extra blood tests (done at the IV appt so they used the canula) which were for a genetic study, but this may be a separate study from TACT2.
I would take part again, although obviously I hope I never have to!
Hope this helps,
Meg
Paula
I started chemo just over 1 month ago and I am on arm 2 of the TACT2 trial - acc Epi and normal CMF. Im glad I opted for the trial as it speed things up and you get the booster injection 24hrs after the Epi which masks a lot of the side effects.
To answer your question I have had no body/bone scan or extra tests. They just ask you for permission to take blood and then ask you lots of questions about how you have been etc.
Good luck
Lisa
Thanks Ladies for your comments.
I think I will go in for this trial. I can’t see any downside to it really and I know its potluck as to what arm you get so lets go for it…!!!
Meg…Let’s hope none of us have to ever go through anything like this again…!!
All the best
Paula
Hi Paula
It is a lot to think about when you have so much else going on, it took me 3 visits to my onc and many chats with relatives who are nurses and cousellers before I could decide. I knew before I made the decision I would get treatment A (the longest) and I did!! I selfishly wanted to opt out right away as I had just signed myself up for 6 further injections and 10 extra weeks over and above the standard treatment. But I am going to have herceptin afterwards and realised without previous trials I would not be able to have this drug which has been developed to target my paticular cancer, so I am sticking with it and have been told I have made a wise choice, after all it is 21st century medicine rather than 20th.
I am new to this forum and was adamant when diagnosed I wouldn’t bother with any support groups, but I have found this site very interesting to read. I helps that you are not having to actually talk to anyone.
I had my first chemo 2 weeks ago and kept myself busy that morning by painting my downstairs doors, it certainly helped keep my mind from what was to come!! To date I have had none of the known side effects and am still rushing around 100 miles an hour, hyper as ever. Actually took my anti-sickness drugs incorrectly but maybe it was a better way, I could be onto something here! I’m sure it will catch up with me after 2 or 3 and hit me like a big hammer, but I will let you know!!
Good luck with the trial Paula, BTW, nothing extra except paperwork!!!
Val
Hi Val
Thanks for the reply. My onc said I would be getting the 1st treatment anyway regardless of this trial so I am just hedging my bets so to speak in possibly getting another one of the 3 out of this.!!
Great news that you are still hyper. I am just 3 weeks after having mastectomy and axillary clearance so just getting back to normal as much as I can as this is hubby’s last week at home before heading back of to work !
I do go to a brilliant support group which I feel really lucky about, although I still tend to come on here and browse what’s happening( not too much though) It’s great to hear about other people’s comments on this trial.
So your’s is the all intravenous one Val?
Good luck with the next one…and the one after that…!!! etc
Thanks
Paula
Hi everyone
Thanks so much for the responses. The big decision day is here for me. I have decided to go with the trial. However small my contribution, if it inches us a little closer to understanding and managing this disease then it is more than worth it.
In real terms I expect this is the easy part, the hard slog is yet to come. I have gained much strength from these discussions and feel armed and ready to go.
Thanks all for the responses, I will no doubt be posting again when the treatment starts for some moral support.
I have read and taken note of the tips that have been collated to help us that are just starting out and will be shopping later.
As a final thought; Where the devil would you buy a wig. I am in South Yorkshire and will be looking for two, one as natural as possible and one to pop under hats. dont think I have the courage to go native.
Good luck Paula and thanks ladies.
Sarah
Hi Sarah
Our free HeadStrong service gives you practical tips and information on looking after your hair and scalp before, during and after treatment. There are sessions in the South Yorkshire area, you will be able to try on a range of hats, scarves, fringes and hairpieces in a comfortable and private environment. As well as being free, you can attend as many times as you want – and you are welcome to bring a companion along for support.
For more information you can either see the link breastcancercare.org.uk/content.php?page_id=2458 or call the helpline on 0808 800 6000 which is open Mon-Fri 9am-5pm and Sat 9am-2pm
Kind regards
Katie
well done Sarah on making that decision…good luck with the HER2 results. I had mine yesterday…I am a triple negative.!!
Keep us posted Sarah…
best wishes
Paula
Paula
Will do, looks like we will be running neck and neck through this so will have to keep in touch.
Not sure about triple negative and what that means. Hope it is good. I will ask the ONC this afternoon what my status is.
Sarah
Hi Paula & Sarah
Good luck with the trial, fingers crossed you get 2, 3 or 4!!! Yes Paula, mine are all intravenous, which is a bit daunting as I have very small, delicate veins, unfortunately the only part of me that is!!!
Talking of wigs, heres my story…
Went to the wig shop the hospital referred me to with my friend for moral support (she went thru everything we are all going thru 7 years ago and is loking and feeling absoluteyl fantastic). Chose a wig and decided to wear it to lunch to try and help me get used to it before I lose my hair. Sitting enjoying our meal and obligatory bottle of wine, I needed to scratch my head and managed to find a little opening to relieve itch. Five minutes later I was aware wig felt as if it had moved, Elaine agreed so I rushed off o the ladies. I just laughed and whipped the wig off and placed it on a shelf. Elaine came rushing in after me and attempted to rectify my ‘wig’ saying it just needed pulled down slightly. We laughed so much when I informed her I wasn’t wearing the wig and she was pulling at my fringe!!! Wot a tonic and the moral of the story … how realistic wigs today look, well definitely in my case. And I’m not worried about it falling off, when I have no hair it will grip better!!
Sarah - you can get stick on fringes to go onto hats, like you I cold not leave the house unless I have somethng on my head. Mind you, imagine that slipping down and ending up on my top lip or chin!!!
Kind regards
Val
Val
Lol…love that wig story…here you go here’s my mad funny from seeing Onc yesterday, he says to me can you get undressed behind the screen so I can examine you anyway I step behind the screen with my BC nurse as she is checking the cording in my arm and I am stood there in my jeans and vest top saying to her in a very dumb moment…“so where does he want to examine me then?”…like hellooooooooo …your toes of course was her reply…!! the sad part was I couldn’t blame that on the morphine that I had when saying daft things in hospital…!!
Good wishes and happy wig days
P
Val
Excellent tale and very funny. I have this ability to be plagued with such misfortunes, I think if it can happen and be totally embarrassing then it will happen to me.
Saw ONC earlier and told him I would be taking part in the trial, he seemed quite happy with that and I have signed the consent forms and will see him next week to confirm which leg I will get. Seems that my BC is HER negative.
Paula, you sound like your mind is as fried as mine.
Good wishes and bring on the Wig!!!
Sarah
Hi Sarah
Great news then…we can be trial buddies together. Did you have any further questions about the trial for your Onc?
I will speak to the BC nurses tomorrow and let them know my decision.
So is your BC a triple negative then? I had a right breast mastectomy and axillary clearance 1st Feb. How are you recovering from yours?I still get pretty tired but have good movement with just slight cording.
See I am of to bed already…!!
best wishes
P
Hi P
When I told the Onc Iwas up for the trial he was quite pleased and went for the consent forms, they did not apply any pressure and I would have felt quite comfortable accepting routine chemo. I had a blood test and arranged to see him next tuesday to confirm which leg of the trial I would be on with a view to starting chemo on the friday.
I think I am technically a triple negative but am not absolutely certain as tamoxifen has been mentioned fror ES but I scored 30 from 200 which is generally a negative I believe.
I am very lucky that the surgery was quite straightforward for me, I had an itchy patch underneath the scar but this was all sorted with a bit of E45. I went back to work part time last week and am looking at returning to work next week fully.
If the chemo is good to me I will hopefully be continuing to work through. I know there will be times when I am wiped out but my employer and manager are just brilliant so will be OK with this and allow me to do a combination of working from the office and from home until I am back up to full speed.
Great idea to keep in touch and share our experiences of the trial. Good luck and I hope that you are selected for your preferred leg.
Hope your tiredness passes soon
Sarah
Hi Sarah
I am not sure about the ES and the score you mentioned. How long has it been since you had surgery then?
I think my tiredness may be due to me having a very mad 16mnth and a 6yr old ( she’s not too mad!!) who are brilliant but still pretty tiring. My hubby goes back to work next week so have to get up to speed with things.
Did you have all your lymph nodes out? Is it good being back at work?
Anyway sorry questions questions questions…!! yes let me know when you get your info on which trial you are on etc…
Best wishes
P