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Hi everyone
I thought I would post a comment - hope no-one minds, as I have also just been diagnosed as TN. I too have a little girl, although she will be 2 on Tuesday (where does the time go), and like others I am so grateful that I have her, as infertility and menopause are now lurking round the corner. I am 43, and obviously had my little girl when I was 41, so did leave it a bit later than most.
The TN was a bit of a shocker but I am so encouraged by some of the people who have posted on this, and it has encouraged me not to lose my marbles immediately and realise that this can be overcome.
I have a 3cm lump which is being targeted by chemo. I will be having FEC-T, and am just waiting for the hospital to ring me with an appointment to start, which should be in 2 weeks. I hate all the waiting!! So hopefully the lump will get a shock, and be starting to shrink before I know it, and there will be a lot less to remove by the time surgery is necessary.
In preparation I have had my hair cut fairly short, as everyone I have seen so far thinks it will go at some point. I am not going to bother with the cold cap, as it isn’t guaranteed and will just lengthen treatment time, so I have my wig on order and bandana purchased. I have also ordered a little fringe piece so that when it’s hot I can shuffle the fringe under my bandana and hey presto no-one would know you didn’t have hair. They are a miracle!
So I look forward to starting my chemo journey soon, and just wanted to wish everyone else well too. Hope for those who are already in treatment are finding their way with a happy heart.
Hi there
Just wanted to say I was DX last September as TN with 3cm & 1cm lumps plus 3 nodes. I had WLE followed by MX as margins weren’t clear. I have just had my last dose of chemo & had 3 FEC 3 TAX. My hair started to go 2 weeks after the first FEC so my OH took to it with the clippers which helped - it also pulls your head when going so clippering made it more comfortable.
I was really pleasantly surprised to find that it started to grow back after the last FEC & has continued growing during TAX so I now have a 1cm fluffy covering!!! - I also didn’t loose my eyebrows or eye lashes so there is hope - not everyone does.
I think the use of TAX is generally if there is node involvement.
I too was frightened by the triple negative aspect but my ONC also said that if you don’t get a recurrance by year 4-5 it is less likely to come back - partly because the others get the hormone therapy for 5 years afterwards & once that stops it can mean the cancer starts to grow again. Iam trying to look on the bright side & at least we won’t have to contend with the side effects of hormone treatment or have a year of herceptin every 3 weeks. Plus there’s nothing you can do to chnage what type it is so we really just have to take the treatment & hope it works!!! - If we could wish for something it wouldn’t be a different type but NO cancer at all after all!!!
XXXXXXXXX jo XXXXXXXXXXXXXXX
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Hi lou
can I ask for more info about the triple neg trial? Just curious really coz haven’t heard of one involving follow up treatment before. Fingers crossed you get the real drug + not the placebo 
I also found rads very tiring but I had a massive area treated. The aloe gel from holland + Barrett is great to sooty burning skin.
Ladies try not to panic about the tnbc diagnosis if that’s possible. I had a fast recurrence but all the medical professional tell me my case is very rare even amongst triple neg ladies. I have met loads of tn ladies who are doing brilliantly, some who had fairly big tumors + several nodes involved. So think positive, push for the most aggressive treatments possible + before you know it you will come out the other side
all the best
tina x
Hi to all new triple neg girls (and existing ones),
I’ve just started my chemo this week, and it not as bad as I expected, I know today is only day 4 but I haven’t been sick or anything - maybe it’ll all start once the anti sickess tablets wear off. Try anything girls to help you get through it, if your nervous about needles and stuff try hypnotherapy, I’m also taking homeopathic remedies to help with anxiety and when you feel low. I’m having 6 x EC which I understand makes your hair fall out theres no ifs or buts about it so I’m prepared too with wig and bandanas (quite looking forward to having no leg, underarm and down stairs hair for a while!)
Hi miltonno7, I too just had my baby at 41 - nothing wrong with it as I still feel 18 inside, just look haggered when I pass a mirror especially since diagnosis. Keeping thinking that when I’m out the other side I’ll need something to make me look younger again as I never used to look 41, but now look 51!
Keep positive - we will beat this sh***y disease
Jo x
Hello
Just thought I would say Hello to all you TN ladies as I too was diagnsed TN this week.
Had WLE/SNB on 29 March and the results showed High Grade 3 very aggressive TN 30mm lump, no node involvement thank goodness. Am meeting with Oncologist on Tuesday next week with a view to starting chemo asap due to the aggressive cancer.
Dreading it all and still trying hard to come to terms with the whole thing really. Have known due to size of lump and my age (46) that I will need chemo so am a bit prepared but still anxious and so wishing I did not have to lose my hair but tell myself it will come back my life would not so this has to be! Am told they will discuss wigs with me on Tuesday when I attend the Dorset Cancer Care unit at Poole Hospital so hopefully that will help.
We must stick together I guess, we are all in the same boat with the c**p disease.
Love
Tracy xxx
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Hello friends
Jo - you have inspired me into feeling much less anxious about starting treatment and I am so pleased that you are having a good time of it so far.
I now have my start date as 3rd May. I was able to enjoy my daughter’s birthday party today (she will be 2 on Tuesday) and we ran riot in soft play, and I was so pleased that I could give that my full attention today without letting my pepperami animal interfere!!
Tracy - I do hope your treatment starts too without a hitch.
I am grateful to all the ladies that have responded, and are keeping the morale so high. It is so encouraging and just what we all need.
I am having treatment at Guildford (Royal Surrey) and no idea about the trial drug for afters, but will focus on getting through treatment first.
Will keep you all posted - have my marker being fitted this Tuesday so they can track the tumour in case it shifts or disappears to almost nothing (here’s hoping) and have my wig fitting on Wed. Woo hoo! Am taking a friend to make sure it looks OK
Michaela x
Dear All
Am new to this site so apolgies if in wrong place. We all seem to be given different chemo and I do not know why I did not have radiotherapy and had local recurrence so now am having it. Where do you find out about trials for triple negative as have never been offered one and am stage 4 ? Is REACT the only maintenance trial there is ?
Thanks
Hope 15
Hi Hope
I’ve noticed there’s a new topic thread in the TCN forum on the REACT trial if that’s any help.
Lou x
Hi everyone,
another question for anyone who can answer it. When I went to see my radiologist once he started filling something in on-line, I believe its called something like “Adj… on-line” its something they use to determine your “outcome” or chances of survival. I was sat there by myself and he was filling all my details in and I can remember thinking, I don’t know if I want to hear this, then the software crashed and I told him not to bother…
Has anyone else come across this?
Jo x
Hi Jo its called adjuvant online… you can google for it if its something you want to look at.
it does say only health professionals can look at it but you dont have to be a health professional… but some people perhaps dont want to know… however for many people the outcome is much better than they expected.
Lulu x
Hi Lulu,
I wonder if you could help me - I couldnt sleep last night for worrying about which chemo I’m getting, I know I’ve got it all out of proportion in my head but I keep wondering why they are giving me EC and nothing else. I keep thinking is it because they know I’m not going to be here for long and so they are giving me something cheap - I know this sounds irrational but when you’re lying awake all night lots of strange thoughts go through your head. I was thinking about emailing my breast care nurse at the hospital to ask my oncologist why I’m not getting another combo - do you think they’ll think I’m being a pain? sorry to go on…
Jo x
People with poorer prognosis are the ones that get the expensive drugs. New experimental ones cos way more than traditional ones. If your getting EC it prob means you have a pretty good prognosis. As I said before if is the eirubicin which does most of the work so the C or the F don’t make so much difference to outcome. They would proven give Epi on it’s own however past research has shown that combination Chemo works better than Chemo on it’s own so just giving E would be good for TNBC but giving E plus something else is even better.
See in the wee small hours if your worried hone your Bcn and leave her a message about your concerns. I always tell ladies to call even if it’s the middle of the night and I will call them back in the morning.
Love Lulu xxx
Hi Lulu,
thanks for the advice, you’ve calmed me down. I have emailed my breast care nurse and she replies saying she’ll speak to my onc and get back to me.
thanks again
Jo xx
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What I mean is recently researched drugs are more expensive so the research companies can recoup the research costs. Research drugs are always tested on those with poor prognosis first often on patient who have no more options before going to the next phase in the research testing on those with scendaries before trials on patients with primaries. Things like avastin and platinums are only currently available to patients with poor prognosis and are very expensive. But with time they may be rolled out those with primary tumours. And with increasing use the costs come down.
Hope that makes sense
Lulu x
Hi girls,
my breast care nurse have emailed to see my oncologist wants to see me - I feel like I’ve been a naughty girl… just waiting for the letter summonsing me to go and see her.
Jo x
Hi Lou
just saw your thread about the REACT trail, I’ve been on this for six months now (got my checks next week), no side effects apart from mild stomach pain in the first few weeks which soon went. The extra checks are a real bonus, they keep a much closer eye on you. Good luck with it.
To all the ladies, It’s now a year since I was diagnosed with TNBC, I feel like a different person now, the fear of the cancer returning never goes away but it does lessen with time & I’m looking forward to the future
nc xx