Hi ladies
I have been dipping in and out of this website over the past couple of weeks and have read some very interesting snippets, so I thought it was about time I joined properly!
I have been diagnosed with a grade 3, triple negative breast cancer tumour which is around 3cm. I found a lump and went to the GP, and the rest as they say is history.
So I have opted for chemo first and saw the Oncologist today. He has recommended FEC-T chemo, but has also offered a trial of Avastin which is apparently supposed to reduce blood flow to the tumour thereby killing it off that way too, which all seems a good plan! I may not directly benefit from the trial but I figure it might be a good thing to do?
Does anyone have any information on the trial that might be helpful?
I am sure like ladies before me, I am just so very anxious about starting treatment. I have a little girl who will be 2 next week, and I am worried about the quality of time I will be able to spend with her. At the same time I hope to be able to continue working my full time job, as I can’t financially afford not to work. I have seen comments that suggest I should be able to continue with a fairly normal life. Given that I work as a PA from home, I assume this may be possible.
I know everyone responds differently to treatment, and just hope that I will be able to stay positive throughout.
Good luck to all going through and post treatment.
x
Hi Miltonno7
My post is just to say welcome, as I can’t really answer your questions as I’m positive for all 3 rather than negative. You may find you get responses from other triple negative people if you post in that part of the forum or change the title to “triple negative newbie here” or something like that.
Hi Miltonno7, Welcome to the forums, sorry u have to be here, I know exactly how u are feeling, its a lot to take in and I can imagine the questions that are going round in your head. I too am tripple negative, Grade3 had a lumpectomy and luckily had clear margins, I am on chemo of FEC x 3 and TAX x 3 and so far have had 2 x FEC. You will definteley find alot of good advice and support on here, from the Publications this website produces which really are fab source of information, plus the Helpline should you wish a more personal contact but the ladies on here its totally inspiring the tlc and support you receive, so please keep posting, dont feel alone or afraid to ask anything at all. Was just about to log off when I saw your post, but just wanted to say hello. Shar xxxx
Thanks choccie muffin and silvershar for your comments.
Silvershar - how are you finding the FEC? If I go for the Avastin trial I will have the T bit of the treatment first and then the FEC, but it will be 3 of each just maybe in a reverse order which they say doesn’t matter?
I am petrified of being so tired i can’t do anything, or feeling so grotty I lose my positivity. I am sure there are times when everyone must lose their positivity, but having suffered with anxiety for a number of years I guess it’s heightened.
Thanks both for taking the time to respond. It’s lovely to be part of a community, albeit one we would all rather than be joining!!
My little girl is just pouring milk all over her, so had better go!!
Hi Miltonn07 you are very welcome and yes it can get daunting sometimes but it does help being on here really it does,and when u weigh it up there are more good days than bad it really is all about how u deal with the tiredness. I admit i found FEC2 more tiring and when u go thru the tiredness it does seem never ending but thats how it is with anything we dont like to do, then when the good stuff comes time speeds up, like a weekend it flies im sure someone presses fast forward on time at weekends then monday mornings at work can drag. When u get over the tiredness u feel lifted and inspired and its amazing how u get used to and adjust to the new normal and being on here sharing with everyone as well as the support from your family and friends is all part of the magic pot that gets u thr it and thr it u will get, whenever u are down and feel grotty just think how its zapping those bad unwanted cells too and that every day is a day nearer to the end of the treatment.
Avastin, what trial is this its not something i am familiar with?
Where do you come from, lots of people on here have threads of people from their own area and arrange meet ups with can be really comforting to everyone…
You take care, feel free to PM me anytime but keep posting and dont ever feel alone, there is always a thread to suit everyone no matter what the bc subject may be and be kind to yourself, advice i have always been given and am now starting to really understand it.
cyber hugs Silversharxxx
Hi Miltonn07
The trial is quite common i think. I was on it because it turned out that i’m allergic to the ‘T’ bit i couldn’t stay on it.This is because it needs to be a ‘fair test’, with all the people having the same treatment. About 10% of people are allergic to the T bit - if you are don’t worry. The way i saw it was that i was glad to have found out at the start rather than have a knock back in the middle of treatment (which would have been the case if i’d done the usual FEC then T). I really don’t think the order of things matter.
So - i can’t comment on T but FEC isn’t too bad. I have a 6yr old and have pretty much been able to carry on as normal. The tiredness and general ‘fugginess’ build up over the treatments. You will learn to recognise that you have no way of topping up your energy so you use it wisely! Your positivity will, if you want me to be honest, change with how you feel. It’s tricky to feel positive when you feel yuck and can’t feel it lifting - but life it will and then you’ll forget how glum you were.
This is a great site and the lovely people have helped me a lot both for reassurance and info. Keep posting and good luck x
ladies, thanks again for your comments. Everyone on here seems so supportive and it really is like getting a new bunch of buddies that I am sure will become very dear.
I spoke to the research nurse yesterday regarding the trial and as I would have to have heart and bone scans done before I could start treatment, therefore delaying start of chemo, I have said I won’t participate. I am desperate to start chemo (as desperate as you can be to start taking in such a powerful chemical!) so that I can start the journey of getting rid of this thing, and get my prize of being done by Xmas!
I have learnt that there is a triple negative thread on the site too so will also dip in and out of there.
I guess it’s the chemo I am dreading, but you all seem to be managing so well. We should be very proud of ourselves I think for coming this far without crumbling and for taking on the pepperami bad cells!
Have a lovely Friday ladies. Thanks again for the lift you have given me.
x
Hi ladies. I had my first FEC last week. On one of these threads I was sure I’d read that sparkling drinks were helpful - so I drank half a litre of fizzy mineral water Monday after the treatment… oh, the WIND…!!! You live and learn. It’s Saturday now, and I’ve stopped all the nausea tablets - felt OK till I bent down to to a little bit of weeding… I’m amazed at how polaxed I’ve felt this week, but today is a bit better… just got that white film over the tongue and horrid taste starting today. Been using Dentyl - anyone recommend anything better? Take each day as it comes eh? I’ve been blogging on a CaringBridge website, which has meant friends and relatives can keep up with how I’m doing without the phone going all the time…and I can read their love and support… ttfn Jane
The white film could be the start of thrush, so keep an eye on it and if it gets sore, get down to your GP and get some nystatin which will knock it on the head.
As for not crumbling, don’t you believe it! I’m sure we’ve all had our crumbly moments - I know I certainly have - so don’t feel like you’ve failed if you crumble too. Just log on and get some sympathy if you’re feeling crap, as no-one will understand as well as others who are going through the same thing. That’s the magic of this site, the fact that nothing you can say will be a surprise.
Best of luck with the rollercoaster.
CM
x
Hi
Def watch out for thrush with a white coating. Difflam is a good mouthwash, especially if your mouth is sore. Take it easy. This is a really hard time emotionally. Try the enjoy the good days, but don’t be hard on yourself when you feel cr*p. Drink plenty, it will flush your system- tonic water is refreshing, with ice. Your balance can go easily, so take it slowly.
Hope you get some good days soon.
Debx
Thanks ladies - got some Nystan in the drawer, so I’ve just gone and gone one to suck… I had a sleep and feel more positive - I also took some more anti-emetic (though the “routine” dose ended yesterday) that helps too… I really appreciate this space to be “real”…
Hi ladies
I have my start date now as 3rd May, so looking forward to getting started and at least I have the next 2 weeks to get my house (metaphorically speaking) in order. I think I will focus on each cycle so I only have 3 weeks to think about and look at it like that rather than the overall, as I think that might be gloomier.
Have read some very positive things about being able to carry on with stuff - thanks staycalm as you have definitely helped with making me feel like my little girl will not hopefully be too aware of the difference. She is very mummy orientated so I would hate to let her down in any way. At the same time i will take your words of caution regarding limited energy into consideration! It’s a shame work gets in the way, although they are very supportive and have said i can take time off without having to go sick, which is just brilliant. Hopefully that time off will just mean I can take little rests in the day if I need to, and that will conserve my energy.
I have bought myself a Nintendo DS to play whilst waiting around at the hospital and need to trial some earphones so i dont annoy anyone in the waiting area!! I thought that might keep me occupied and less focused on the treatment.
Hope you are all enjoying the weekend ladies. Will keep posting.
Michaela x
Hi Michaela,
I’m starting chemo on the 5th May. I’m planning to get my house in order too and buy a freezer so I can stock it with things that don’t take much effort to cook if I feel yukky! My girls are teenagers and I’m hoping not to be too poorly as they get very upset by the whole chemo/losing hair thing. Also, my cancer is genetic which is worrying for them. I think we’re doing the right thing getting prepared. Hope your house sorting goes well
Rachel xx
Michaela, taking it one cycle at a time is absolutely the way to go. I was very sick with the first one (much better for second, they changed the meds) and I really couldn’t face anyone even talking to me about the second, let alone having to think about it, and the third, fourth, fifth and sixth!