My mum has been diagnosed with breast cancer and had a mastectomy and lymph node removal on the 21st December. We had the first meeting with the oncologist yesterday who confirmed she will need chemo and rads.
She’s been asked if she wants to take part in the TACT-2 clinical trial and I wondered if anyone on here has done this? It’s obvious;y a huge decision to make and one that she’s not really in the right frame of mind to be able to deal with as well as she’d like to. I’m trying to get as much ‘real’ information as I can so I can try to help her come to the right decision.
My mum doesn’t have internet access, hence the reason I’m doing the posting.
Any advice you could give would be gretaly appreciated.
HI Missy,
I have been on the Tact2 trial and just finished my last cycle a week ago. There are four groups to the trial and i was allocated group 4 accelerated Epi/Xeloda. As i was on the accelerated one i had the chemo every 2 weeks instead of the normal 3 weeks cycle. I decided to take part as i though it may helps future treatments ,and was assured that by takeing part i would still be recieving at least the standard chemos available. You dont know which group you will be selected for untill you sign up for the trial then your details are put into a computer at the Royal Marsden and you are randomly assigned a group. I was pleased with the group i got as it meant the second half my chemo would be in a oral form which was good. The trial has been running for some time now and there are quite a few ladies on here who are also takeing part, you will be assinged a trial nurse who will keep a close eye on you and the trial will want to see how you doing for many years . Chemo can be tough but all the ladies on here will tell you it is do-able and the chemo nurses will give you meds to help combat any side effects you may have. Its sometimes a diffucult decision to make because everything happens so quickly when you are DX with BC and it is an emotional rollercoaster, then your presented with making choices of treatments. Im glad i decided to go with the trial it was the right decision for me as it may help future treatments ,and ladies before us took part in earlier trials to enable us to have whats available today. Its a personal choice though and only one your mum can make. Good luck and please let us know how it gos, I know you will get lots of support and advice from all the wonderfull ladies on here.
All The Best
Lindiloo x
Well put, Lindiloo - I just thought that I’d have nothing to lose - I think the treatments are pretty much the same, it’s more about looking at different side-effects and by signing up there’s a chance that your chemo could be over quicker as the accelerated arms of the trial involve v expensive GSCF injections the day after the treatment that speed up your recovery. I read somewhere that the GCSF injection alone costs about £700. If you end up on arm 1 then that is still the standard treatment and a very good one at that so you really have nothing to lose.
I am on it too. I had normal Epi and then Xeloda tablets which were fantastic. I would not hesitate to do it again. So many decisions to make in the early days, it is really hard.
I started on chemo last May and finished in Oct. I opted to take part in the TACT 2 trial and was randomly allocated arm 2 which was accelerated Epi followed by standard CMF. As the Epi was sped up, with the help of a GCSF injection 24hrs after each session, the total treatment time was 1 month shorter than the standard for E-CMF.
The care I received on the trial has been faultless and I am continuing to be followed up closely which is very reassurring. At each chemo session the trials nurses would come and see me and go through various bits and bobs, and they were always at the end of the phone if I ever needed them.
The trial has been going for sometime now and so I was confident that any ‘teething problems’ would’ve been ironed out. Also, I knew I could opt out at anytime if I so wished,
Thanks for all your replies. I’ve found and read most of the posts that I could find about TACT2 and they all seem to be pretty positive so thats reassuring. After reading all the bumph the oncologist gave my mum I did think it sounded like a good idea. But it’s good to have that confirmed by ‘real’ people who’ve actually been there. It’s been perticularly good to read that the GCSF could be done by a district nurse or even by mum or I at home, we’ll have to check that out with the oncologist.
None of the options are going to be easy, but if we can get away with the lesser of the evils then all the better.
Another question I thought of, which may sound silly. Did you guys have someone go with you to hospital for the chemo? I work full time, but my employer has been great and gave me 2 weeks off while mum had her op and so far I’ve gone to all of my mums hospital appointments with her. I wouldn’t have any problems getting time off to go for the chemo, but would you say I’d be in the way or is it best to have someone there with you? How long are you usually there? Is it an all day thing?
Sorry for all the questions. And thanks again for the replies so far
Missy
xxx
I was on the same leg as Princess18 accelerated epi and CMF and finished my chemo in Sept last year
out of all my chemo treatments i only went by myself once. the person who you take with you is never in the way and i found they could run around getting water etc when I needed it. the treatments dont take too long. My daughter attended a few times with me and as she is a student nurse they gave her the full works - explaining every step of the way and getting her to feel for the ‘right’ veins to use. the one time i was on my own i didn’t feel lonely or anything as the nurses were great and would chat to you right through it also there would always be a few others being treated in the same room so i always found someone to talk to
Thanks for that kelyn. I’ll definitley go with her in that case. I want to go because I hate the thought of her going for these things on her own.
Did you need much help afterwards or were you ok as far as side effects were concerned? Just trying to plan ahead as much as I can, although deep down I know you can’t plan at all. I can’t help it, I’m an organiser lol.
After the epi (with GCSF the day after), I felt pretty exhausted and a bit off my food (no sickness though - anti-sickness stuff v effective). It wasn’t as bad as having flu but I would need bed rest during the day and felt rough for about 4 days then picked up really quick after that. I could have managed on my own if I’d had to but it’s nice to have someone cook for you, clear up etc and nip out to get food things that you feel you can eat etc. I think your mum is lucky to have such a caring daughter. Don’t worry too much about your mum. The thought of the chemo is worse than the actual thing. It is not pleasant but it is do-able. Good luck to your mum.
I wouldn’t have liked to go on my own. My husband has driven me to all appointments although he couldn’t come in the treatment room as he has a needle phobia! We are at Christies and after arriving for a 10am appointment, it would be mid-afternoon or later before we were finished. They do a blood test when you first arrive then they wait for the results of that before ordering your chemo drugs (which takes a couple of hours) then you have to remember to hand your pharmacy prescription in as early as possible otherwise you’re waiting an hour or more for that! Although we quite quickly got used to it, I was glad of my husband being there with me for company whilst waiting as well as sorting out where I needed to be and remembering to collect prescription etc etc.
I am in the same position as your Mom. I have been asked to go on the trial too. I had kind of decided to go for it but reading all of the comments has really helped me to firm up my decision. I need a body scan first before chemo can start but thats next week so hopefuly it will be clear & then chemo can start.
Does anyone know if its a good idea to drive yourself or is it best to get the bus?. There is only me that drives in the family so those are my options. Any advice would be good
Missy I hope everything goes well for you & your mom
I was on the TACT2 Trial arm 4, but unfortunately the Xeloda didnot agree with me and caused my bowel to stop working. I ended up in hostipal for 12 weeks and nearly died. This is a very rare side affect but can happen. my Onc stopped using this form of chemo for a while after this happened to me but has re started again.
Please be aware of the side affects of this drug and get medical help immediately if you start to feel unwell. I know this is not what you would like to hear but i feel you should have all the facts so you can make the right choices for yourselves.
i felt ok after the first chemo - i could tell that something wasn’t right in my body but had expected to feel so bad that i had a pleasent surprise. after each one though i did feel worse but still very doable. I had a few infections which got me down.
i had company for the first few weeks as my husband took time off work, when he returned i found that spending time with my cyber friends on this site really helped. i also went weekly to a cancer support group which I found was brilliant therapy and actually a very good laugh, i would have alternative therapies there such as reike and massages. i would have to say that it was only for a couple of days throughout that i really needed someone with me. 99% of the time i was able to made simple snacks and coffee etc. I had more good days than bad days and on one occasion i had a wedding to attend and i got quite drunk, danced the night away (even dancing on chairs and i’m 50!!!) and thoroughly enjoyed myself - no-one would have guessed that i was having chemo other than a scarf on my head.
it is a roller coaster ride and my advice is to take it a day at a time, if your mum feels good then let her make tea etc for you, when she doesn’t then pamper her.
I am doing fine now and i went back to work in December. when i started with treatment i would read about others finishing their treatment and think it would be forever for me to get there - it has gone surprisingly fast.
tips - the driving in my opinion will depend on what chemo you have. with epi i would have a strong anti sickness with it so nothing would kick in for a few hours so i could have drievn with no problems then. with CMF it made me go ‘funny’ straight away so I preferred not to drive although on one occasion i had no choice and i drove myself .
My mum has spoken to the trial co-ordinator today and told them she’d like to go ahead so she has an appointment on Tuesday to make the final preperations and hopefully we’ll get a start date.
I think one day at a time is the best advice. I’ll take mum to her chemo appointments, but apart form that I’ll plan to come to work as normal and if she’s feeling particularly ill I can always leave work for the day and go round and see her. I only work 15 minutes drive and live 5 minutes drive from her so that should be ok.
Thanks for those tips about the pharmacy etc Nicola, it’s little things like that which help a lot.
Good luck with your bone scan Tippy and keep us posted.
Glad to hear you’re doing well kelyn, it’s good to know theres light at the end og the tunnel
xxxx
Just a comment on my experiences on the TACT2 trail, which I finished in Nov (finished rads today… yipee!)… Arm 3 of the trial and like everyone else, do-able. I was fine going on my own, but I’m 44yrs and fairly independent. I can fully appreciate how some folk, and especially older ones, would benefit from support & company… however, at my hospital most family/friends had to wait outside the ward.
Someone said earlier about getting your blood tests done at the hospital on the same day as the actual chemo… I think the procedures can vary depending on where you are treated… I was at the Beatson in Glasgow and I was able to have my pre-chemo blood tests done at my local GP surgery, by one of the practice nurses. I got an appointment for the day before chemo and they got the bloods processed and the results were accessible by the Beatson. That meant not so much hanging around on chemo day… I usually only had to see one of the oncology/chemo nurses, who accessed the results and was then able to authorise the pharmacy to issue the chemo drugs…
AliS - my bloods were done the same as your - I’d go to the GP 1 or 2 days before and then when i went for chemo i wasn’t too long there - normally about 2 hours. thats so mean making family wait outside - i suppose it all depends on the size of the room they have - where i went was a small room but it held chairs for 4 patients and 4 companions.
when i had a further lump checked (harmless thank goodness) i even asked if my daughter could attend that as she is a student nurse and they showed her everything and talked her through the scan - its amnazing how much she has learned about cancer through this ‘trip’
missy - my youngest daughter was exactly like you (and still is) extremely worried that i would ‘overdo’ it and was always waiting in work for that phone call to rush home to sort me out - that phone call never came so fingers crossed your mum will cope well - its not an easy ride but it is doable, its very much like a rollercoaster some highs and some lows. please dont make yourself ill through worrying
Missy - I feel for you darling. I sometimes think it is worse for our lovely daughters and sons whose lives too have taken a blow because of this beast. But your mum will come through this and as long as she knows you are there it will help a lot. Don’t wear yourself out worrying just do what you can do and so will mum. It is a hard journey for everyone involved but just think about when it is over and how much love and caring we are all enabled to express to each other which normally is taken for granted.
Just wanted to say that though trials like TACT2 are partly about looking at side effects their major purpose is to decide whether a new treatment has progression free and overall survival benefits over existing tretament. This is how progress is made in cancer treatments, For example, many women these days get FEC and taxotere as standard (if they have some kinds of cancer.) This was very unusual only 5 years ago when I was first treated. As a result of trials (I think TACT1 may have been one of them) it was found that adding taxotere to FEC or AC does have survival benefits.
As others have said you get very well looked after on a trial and yes you are contributing to the future of cancer tretament, so I’d say go for it anyone who has the chance.
As to going to chemo alone…I have been to most of my chemos (had over 20 now) on my own because I prefer it that way. I have private medical insurance though so there is less hanging around…depending on the chemo I’m in and out in as little as 45 minutes to 3 hours.I drive unless I’ve had a tranquliser beforehand. (short journey)
I think its nice to have someone with you on the first one probably and after that play it by ear…we are all different. Its when I’m lying weeping in bed with exhaustion three days afterwards that I need help and support…I find the hospital bit quite jolly and it can be good to have other patients to talk to (though I don’t often get that…what with the private stuff…)
just to add my ten pence worth…personally I never went to any chemo sessions alone. I honsetly don’t think I would have been safe to drive afterwards as the CMF sometimes made me a little light headed. So, my boyfriend came with me each time to hold my hand and chauffeur me, which was awesome! As with a couple of other ladies, I always had my bloods done the day before, but at my local hosp. When I arrived at the chemo unit the following day they would have the results and the chemo would be all prepared. On each time I was not there for more than an hour from start to finish. I know this defo differs greatly from place to place though, I live in Shropshire.
Hi there, I am new to this site and have been recently diagnosed with breast cancer. I had an op not long ago and the grade 3 cancer of 1.5cm was removed. I have optd for the TACT2 trial and am on ARM 2. I had my first epi today, was scary, I am beginning to fell heavy headed but okay other then that at the moment, dunno how my night will go, fingers crossed!! Has anyone any advice for me? anyone on ARM 2? i would be grateful as i am very nervous about whats to come. Thank you.X
