Hi all
hope you are all as well as can be expected. Has anyone been offered a trial treatment called tact2? After refusing a trial named Beatrice yesterday my Oncologist phoned me today and asked if I wanted to look at this other trial.
Just corious to see if anyone had heard anything about it.
Take care
Lynn xx
Hi Lynn
Im on this trial but got arm 1 which is the normal treatment. Quite a few ladies are on this and I think there is a thread on it.
I about to received my 4th epi shortly.
Hope everything goes well
Sharon
x
Hi murdo,
I did arm 3 of the tact2 trial, there is a really good info site about it on the cancer research uk website, go into clinical trials and keep scrolling down till you get to it. I had iv epirubicin for 3 months then xeloda tablets for 3 months, for me it was great as i really hated the venflons for the epi so tablets for 3 months and no more venflons was brill. Lynn is right there is another good thread about the trial on here. Best of luck with your decision making,
take care, rivergirl x
hey
tact 2 trial is about seeing whether people do ok if chemo is accelerated
we are randomly allocated to the groups
if you don’t know enough about it - please make no decision until u do
jx
Hi Lynn
I am tact2 trial. I got the fastest leg of it. It is a phase 3 trial as apparently phase 2 was very successful. Part of the trial would have been my standard treatment anyway the Epi and CMF route so it is a random trial in as far as no-one knows what arm of the trial you will be allocated. You can come out of it anytime and return to your chemo. My Onc said all legs of this trial are of top standard in as far as the drugs used. They could not put there names to it if at any point they KNEW one part of the trial was better than the other.
I personally could not see any negatives in taking part in this. They also told me normally you are "dismissed " after 5 yrs but on a trial you are not for 20yrs. They will keep in touch and ask for forms to be filled in etc.
My Onc was talking to me very briefly about the Beatrice Trial but as of yet I don’t have any info. You would be a triple negative I take it Lynn? As I thought the Beatrice was for triple negatives??
Please feel free to ask any questions about the TACT2 I know there are quite a few ladies who are on it or have completed it.
All the best
Paula
Hi ya
I am on tact2 arm 4. I sharted my chemo yesterday only 3 more to go. I don’t feel too bad at the mo. A bit weary, but I know it will get worse before it gets better. I just try to consentrate on the good things, my 9 week old grandson (he was born the day after my op) Unfortunatly my son lives a 4 hour drive away, I have been to see them, I drove an 8 hours round trip 5 days after the op! I have been down twice since but not there and back in a day, sayed 10 days one time a week the next. I am hoping to go down again soon but will have to see how I feel. If not they are coming for a week or so endJune/beg July for my other sons wedding. Solots of good stuff to think about. My family are great (if a little over protective, I had a good rant about thyem last week but we have got it a bit more sorted now) I have been intouch with cousins I have not seen for years (all live miles apart) and all have be come much closer again which is great! I have also found this site and you all are so great justing chatting to people in the same boat helps a lot.
Thanks to you all
Take care
Denise
Hi TACT 2 ladies, hope it is going well.
Murdo - I accepted the offer to join this trial on Thursday after days surfing the net and discussing ‘what would you do’ with anyone who was willing to give a straight answer and not many were. When I saw that capecitabine is being used regularly in America I knew it was a good one as they are ahead of us. I should hear on Tuesday which arm I get, so now I am trying not to compare them in case I get my heart stuck on one of the options and I don’t want to feel disappointed. My friend is getting FEC, which is the standard treatment in our area. The first 2 groups on TACT2 get FEC plus another drug and the last 2 groups get the second half of their treatment at home on capecitabine tablets, which did not mean a lot until I found out my veins are second rate and won’t cope with iv. Read all the leaflets and write all your questions down, some of the internet sights give you a list of questions to ‘ask the doctor’ to keep your thoughts on track. Lots of luck with your decision, I changed my mind every day and let me know if you join.
Lily x
Hi all
I have been offered the’arm 3 accelerated’ which after much thought have decided to take. I start my treatment on the 20th of May, which is strange because after declining the Beatrice Trial, I was told I couldnt get my ‘Chemo talk’ untill the 20th and my first treatment would be even longer. Had a long talk with my Nurse who explained all about each trial. We were going away for the wekend after the appointment so had to take the call regarding which trial I had beem picked for on the motorway ! Although glad to be offered the 3 accelerated all became a bit real. Will be glad in some ways to get started.
Hope you are all doing ok?
Take care
Lynn xx
Hi All
I am on the TACT 2 trial arm 3 with the EPI & Capcitabine ( not accelerated)
Have fininshed the EPI ( yipee) and now on the tablets & I take 10 a day. So far so good, I have not been sick & just feel a bit tired but far better than on the Epi.
I thought that it was a good hing to be involved in as I too was advised that the drugs used fir each arm were equally as good & all with the same chances after treatment. After all I thought that if no one did a trial we wouldnt have the treatments we do now so god bless the women who weny before us.
Love Tips x
Hi all
I also had arm 3 of the trial, epi/capcitabine. Finished last tablets on new Years Day. Thought the Capcitabine was preferable to Epi but did find the effects seem to worsen as I got to the end of the course i.e. upset tum and horrid taste in mouth. Hope all goes well for you on the trial.
I was on the Tact2 trial last year and was arm 4 (accelerated). My viens are not good so I was really pleased to be on Capcitabine tablets. Also I had a friend who works for Roche (the manufacturers) and who got me lots of information.
I did feel tired towards the end of the 4 cycles of Capcitabine but I think it was the total of the chemotherapy.
Remember to cream your feet well as one of the main problems was very dry skin and I started to get red skin on my feet on the last cycle and rinse your mouth with salt water as gums can get a bit sore.
Keep well. And big hugs. (((((((( ))))))))
Thanks Jordan and MargaretC
I have just last my last Epi today…yahooooooooooooooooo and start the capacitabine tabs in 2 weeks as I too am on accelerated arm. So any interesting info from Roche???
Thanks for tips
Paula xxx
Well done everyone for getting closer to the last chemo .
Murdo I will be having my first chemo on the 20th too but I have arm one. Will keep you company on epi for a while, mine is going straight into a port. Are you going to do scalp cooling? I thought I might at least try it once.
Night everyone
Lily
Hi all, havnt been on for a while,thanks to all for replying about TACT 2, had my first one today.Feeling ok at present, slight metal taste in mouth but nothing major. Funny how no matter how much they put your mind at ease, you still have these horrific images in your head of how you will react. All went ok though. Having my white cell injection at GP surgery tomorrow, hope some sort of normality lasts for as long as possible.
Lily, how did it go for you, maybe we can compare. I am having arm 3 accelerated, not having the cool cap, spoke to one of my Nurses who said in my case if it works at all it will just leave my hair thin, so going for a scarf at some point. I think this is because my treatment is accelerated though. I have spoken to 2 people over the last couple of weeks who swear by it, each to there own I guess. Hope your all doing ok
Lynnxx
Hi Lynn,
I did lose my hair midway between the first Epi and the second. Well, as I lost a lot at once I had the rest shaved off. I felt better having it shaved than being thin. The consolation is that it started to grow back while I was on the Capecitabine.
Do ask if your district nurse can come and give you the Neulasta injection at home. Mine did and she also took my blood test before chemo. Or if you go to the surgery ask if you can go into a set aside room so you are not close to too many people. No sense in taking too many chances with infection while you are on chemo.
And all my best wishes xxxxxxxx
Margaret
Hi everyone
I got arm one of TACT 2 which was the only one I didn’t want - typical, mainly as I would stop my full pay before reaching the end as it is a 7 monther. Still as no doc knows exactly what treatment is best for each case, I guess a computer can probably do just as well. So I have stopped looking at other options and decided to go positively into the one fate picked for me. I hope you are all happy with yours too. Murdo - we started chemo on the same day, how are you feeling?
I had a real crappy start as they insisted I had another op to have a port implanted in my chest. I was very anxious about this as they went in through my neck and the other end is in my heart. It also meant I had 4 wounds in a tiny area as they insisted on putting it on my BC side too, away from my heart?? It went fine and I consoled myself with no hunting for veins in future. They were unable to access my port as I was only the second person to arrive with a new type of port, which they had not seen, let alone work on sewn inside my chest. They wanted to send me home with no chemo but I kept holding out as I knew I would be wetting myself to come back a week later and start again and probably get very low about it. My research nurse backed me and they talked for almost an hour, without talking to me. Finally they said no to using the port as they had run Iv fluids into what they thought was the port and it had come up as swellings all around the scars, as they had missed the port - nice. So they offered to use a vein, which went in 3 seconds and was fine and treatmnent done in 20 mins or less. I had been told my veins were too small! So went home happy to have one under my belt. Someone must have been feeling sorry for me as I have no real symptoms to speak of and have been hoovering and washing today, after clearing the week for lying on the sofa. I guess the drugs are just really working for me, so hope I am as lucky next time too. Just had to take one reflux tablet at 2.30 am and woke every few hours during the night, but I cannot sleep on my front or sides because of the port, so cannot turn as usual. Murdo I would love to keep in touch, how did the jab at the doctors go? Will you try to do them yourself? I have used the cold cap, it was one where you were a helmet full of tubes attached to a refrigerator unit so it never comes off or cools. Absolutely horrible for 5 mins and by 20 mins no problem to manage. Only 2 points on the front of my head complaind, the back and sides did not register it so perhaps I will be patchy or like a monk with a ring on top!! How funny. I was told that I could not have the cold cap if I got an accelerated arm because I would use it too many times and I would be in so often. My cancer leaflet says epirubicin takes all your hair every time but that the cold cap can sometimes work. I have no metal taste from it.My appointment zoomed up on the dates when I went on the trial and I found out later that someone else was kicked off the operating list to fit me on, which I would not have agreed to had I known.Research nurses seem to be able to get things done. Mine is lovely and was with me non-stop through all the muddle. I had not realised that I would get all my drugs free on the trial and hand delivered. My friend (not on a trial) had to queue up for ages at the hospital dispensary and pay over £30 each visit. I have 2 wigs, 8 hats and 6 scarves ready if my hair goes, as I like to be prepared for any outcome. I had the best time choosing a wig and got a prescription from the hospital who pay up to £200 for all cancer patients so you can get a nice one. I got one longer and a short one that looks better than my real hair, it has hioghlights, a parting you can change the lot. You can even wear them in pony tails or up. Try H & M for some trendy scarves and a really good choice of coloure with lovely coins and fringes round the edges.
Good luck all you TACTERS and thanks for all your comments.
Lily x
Hi Girls/Lilyhad first chemo yesterday & feel ok, little tired, but I did go into work before chemo and again today before injection. Injection stung a liitle but was OK. Guess the anti sickness drugs are working, but some very helpful people have reminded me it will get worse as time goes on ! Lily sorry to hear you had a bad time re: veins, all you need is more stress. Like your friend I have to pay for drugs so bought a pre payment cert. £27.00 which covers 3 months and paid for itself yesterday after picking up my meds. Where abouts do you live? Its a bit of a postcode lottery I thinks. Like some of you my appointments were made nearer afteraccepting the trial, mines accelerated so I only have 3 more doses of the injections which puts another light at the end of the tunnel. Going on internet later to look at scarves etc. Hope you are all doing as well as expected.
Big Hugs to all
Lynn
Hi everyone how are you tonight?
murdo, so glad your first one was not too bad. very impressive going to work I have not been in since op and don’t think I could manage being a secondary teacher as they are better to have a permanent cover if possible. I think we should hope to stay ok through this stage as we will have the same dose and only one drug for this part, well you can’t blame for being optimistic or I might start getting worried!
I remember reading in the trial info somewhere that treatment must start within 8 weeks of the operation but preferably sooner, so I guess that you then become more urgent. I even pushed someone off the operating list, without knowing it was being done. I thought that arms 2 and 4 were the accelerated ones although you are much quicker than me of course, I stop mid Nov and then start radio. Will be lucky to finish this year and likely to run through Christmas, which is my favourite time of year. I have been told I can pull out before the end but this sounds a bit dodgy to put anything before my health. I don’t know why mine were free now I will see what happens next time.
Shazjan did each epi get worse? Have you had your final one yet? Please keep us posted how it goes.
Thanks everyone for letting us know some reassuring and helpful stuff, as always.
Keep smiling
Lily x
Hi Ladies
hope you are all still ok? friday now and still feeling ok, some hot flushes, little tired, and red face, [looks like I have been in the sun]! Still managing to keep going though! Realy bad pain in head, across forehead and this morning over eyes, have been told it’s called ‘chemo brain’, well I was loosing the plot before so not sure how this will effect me. Easing off with pain killers and cool plasters[which are not attractive].
Last day of tablets untill next time, but stick to the anti-sickness as tjis is my biggest dread. Interesting to see if each ‘dose’ gets worse, please let us know.
Well lets hope we all keep well nd get to enjoy some sun.
Take care all
Lynn
Hi
Another one with a red face, I thought I was on my own. I have spent the whole day tryiong to convince people that I am not just ‘catching the sun’. My chest is red too and all my skin looks slightly suntanned. I have been very tired for the last 2 days and gave in completely to a day on the sofa yesterday. Went out today and had to sleep while out, before and after. Weird I am a real insomniac normally. Hope your head is feeling better when you read this. Don’t try to do too much just give in and let it all flow through so the body can concentrate on fighting back.
Thinking of you
Lily x