Just diagnosed with triple negative caner

[Lulu34]

Jo chemo can stop your periods.... sometimes temporary and sometimes permanently....

this is something they should have told you before as for some women it can then make them infertile and should offer infertility counselling prior to starting chemo... i hope im not springing something on you that you werent aware of.... however the younger you are the more likely your periods are to come back, but there are no definites.

marge glad your doing well now.

much love Lulu xxx

[Marge]

Dont worry Jo, I know about the centre, but never went there as I had all my treatment at North Tees. I did have my rads at James Cook, they were very good it was just tiring going back and fro every day

Hope things go well for you over tne next few months treatment wise

Take care

[darlojo]

Sorry Marge, you must think I'm a plonker you'll know all about the holistic centre. It's the chemo affecting my brain cells I'm sure!

Jo x

[darlojo]

Hi Marge,

yes, I'm from Darlington and I'm having all my treatment etc at James Cook , can't say enough good things about them really, everyone is brilliant. If you get the time go to the holistic centre they are excellent in there and can help in many ways.

Jo x

[Marge]

donna I hope my post gave you all a boost, it's a vey frightening time when you are first diagnosed, and you read so many bad reports about TN

Best wishes
xx

[Marge]

Hi Jo, sorry cant help with your query as I was 62 when I was diagnosed, so much for TN mostly affecting younger people 🙂
I had a little blip after my 3rd chemo,but only one day when I felt exhausted, then you think half way now, wont be long !
Are you by any chance from Darlington ? I am on Teesside

Take care

[Guest user]

Post deleted

[Guest user]

MARGE... thankyou from the bottom of my heart, thats just what us TN girls need to hear

big hug
thankyou again
Donna
xx

[darlojo]

Hi Marge,

thanks so much for your positive comments. Like you I'm getting 6 x EC (not many seem to get exactly this) so I am very glad to hear that you're doing well. I've had chemo no. 2 and at the mo the side effects are nearly non-existent, don't like to say too much as I don't want to tempt fate. My periods seems to have stopped, do you know if this is the chemo or the anti sickness or steroids, does anybody else know?

Jox

[Marge]

Hello ladies, it's a while since I have been on the forums. I was diagnosed in April 2006. With a 5cm lump, which was triple negative, no lymph nodes involved. I had lumpectomy, 6xEC, which wasn't too bad for side effects, 15 radiotherapy, and have now just had my final mammogram of my 5 year check up. All is well, so I have been discharged from follow up.

Have faith ladies, and fight the good fight as they say. Wishing you all well for the future

[Guest user]

Hi I'm also tn happy to chat if u want to ask anything I had fec tax mx rads and now have just been dx with sec to lungs gd luck for tomorrow laura

[darlojo]

Hi twinkleberry,

welcome to this site, you'll find lots of friends advice and help over the coming months. If you have questions just ask away - there is always someone who has been there, done it or doing it.

Good luck for tuesday, I have my 2nd chemo on Wednesday and just hope I have no side effects like the first one

Jo x

[Guest user]

Hi I have recently been diagnosed with TNBC. Had surgery on April 12th. Saw the surgeon on Friday who said the tumour was 11mm so in his words very small. I had 10 lymph nodes removed 2 of which were positive and a 3rd which had micro traces. He said the tumour and any cancer they know about has been removed although the tumour itself was very close to the chest wall. I have already seen the oncologist and start my chemo on Tuesday 3rd May. My CT and Bone Scan were clear. Have read the positive threads about TNBC with lymph node involvement and get a real lift from them so thank you to those who have posted them x

[Guest user]

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

[darlojo]

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

[Lulu34]

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

[Guest user]

Post deleted

[darlojo]

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

[Lulu34]

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

[darlojo]

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

[Lulu34]

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

[darlojo]

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

[Guest user]

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

[Guest user]

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

[Guest user]

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

[Guest user]

Post deleted

[miniminx]

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

[darlojo]

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

[Guest user]

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

[Guest user]

Post deleted

[millykins01]

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

[Guest user]

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.

[Guest user]

Post deleted

[darlojo]

Hi Lou,

actually Lou, I'm going insane, its not part of the NHS, its a charity but you are referred there by your onc/breast care nurses. You don't have to pay for their services but I'm going to give a donation each time I go as I feel I want to.

Jo x

[darlojo]

Hi Lou,

Yes, the homeopath is part of the NHS, our hospital has an Holistic Centre in the same grounds and as a cancer patient you are entitled to homeopathy, aromatherapy, reiki, hypnotherapy, massage and lots of other treatment for free and your main carer (my hubby) is entitled to any 4 treatments for free. I'm having hypnotherapy next Tuesday (day before chemo) as I'm terrified of needles (can't believe I've managed to give birth twice!) and I've got my name down for reiki and reflexology.

I'm off to my wig man at 1 today just hope I dont look bloody stupid - I'm always hot anyway so once the treatment starts if the flushes start I'll be going commando or wearing a scarf or something!

Can you tell me what maggies is, I've never heard of it.

I'm still laughing about the wig!

Jo x

[Guest user]

Post deleted

[darlojo]

Hi Lou,

thanks for that, you've just made me laugh! no mean feat as I'm having a bad day today. I went to the hospital to see homeopath and she got it ALL - I've come away with 2 little brown bottles and a little packet - here's to hoping they help.

I get get the picture of the melted wig out of my mind - I bet she laughed too.

I'm going to be fitted for my wig tomorrow so might call in at the wine shop on the way - never been a big drinker but seem to have drunk more in the last 7-8 weeks than in my life!

I'm wondering if you get buy hairy eyebrows to stick on ? or maybe use a couple of those very hairy caterpillars you see crawling about!

Hooray on the eyelash front!

Jo xxxx

[Guest user]

Post deleted

[Lavenderlassie]

If you can't get to a Look Good, Feel Better Session, either look them up online or order a DVD to help. I normally have very pronounced eyebrows (being interpreted my desert island accessory would be tweezers)and found the moth eaten eyebrows very unsettling, but the LGFB pencil from Lancome was easy to use.And they grow in faster than scalp hair!

http://www.lookgoodfeelbetter.co.uk/site/docs/eyebrow_guide.pdf

[Jo_BCC]

Hi Jo,

Here's the link to the 'Look good feel better' website which you may find helpful.

http://www.lookgoodfeelbetter.co.uk/site/index.cfm

You can also give the helpline here a ring and they'll be able to talk to you about this as well.

Take care,
Jo, Facilitator

[darlojo]

Hi Lou,

eyebrow pencils - I wouldn't know where to start drawing them in! I'll look like a clown - is there not a course or someone at the hospital who teaches you to do this type of thing - I'm going to be wondering around my home town looking like a transvestite!

Jo x

[Guest user]

Post deleted

[darlojo]

Hi Val & Lou,

I've actually bought 3 of those buff things without knowing what they were called from T K Maxx. I've never heard about the nails being affected - is it only certain chemos that do this or is it all! as if we dont have enough to contend with...........

Jo xxx

[Guest user]

Post deleted

[horace]

A buff is a soft jersey tube which can be worn in many different styles[leaflet comes with it]available online or from Black's Outdoor and other similar shops.If you paint your toenails [and fingernails] a dark colour pre taxotere you are less likely to lose them.Cant help re false eyelashes I'm afraid.

love Valxx

[darlojo]

Hi Loupylou,

I've decided just to shave my hair off too, I don't want to freak my 6 year old out by having less and less hair each day (and myself) I think I'll go to my hairdressers after hours, take a bottle of wine or two, some close friends and have a laugh! i think thats the only way I'll cope.

Can I ask you two things - what is a buff and what's this about toe nails? Are we able to wear those false eye lashes you can get, the one's that are individually put on? the whole idea of losing eyebrows and eyelashes seems weird!

I asked my onc if I can be referred for genetics as I read somewhere that you are more likely to carry the BRAC1 gene if you are TN and I have a daughter so I want to find out for her sake.

Jo xxx

[Guest user]

Oh heck - that was breast surgeon not beast!

[Guest user]

Post deleted

[Guest user]

guess ill wait for the results to come in on the 13th had tumor removed last week with nodes hate this waiting game more so when i was told they would have test back by monday but they had to talk about my next step first thanks anyways

[Midge]

Hi honey bee

Being hormone negative doesn't automatically mean triple negative. You will also be tested to see if you are her2 +. Sometimes they like to remove the whole tumour to test for her2, but I have heard of others having a FISH test to find out and I am not sure if you need the whole tumour or just a biopsy. Triple negative means er- pr- and her2-.
I am er and pr - but her2+.

As for a good thing it's hard to tell. Obviously as a women you are producing hormones so if your cancer is being fed by them that's not good. But tamoxifen helps stop this and it seems to be pretty effective. Her2+ cancer have the reputation of being aggressive, but herceptin is a relatively new but hopeful improvement in treatment. Triple negative means that Chemo and rads are the main treatments and after that there are no further therapies at the moment. I have heard the tn cancers respond well to Chemo.

We are have reasons to worry about out dx. But until you have the full picture it is hard to get your head around it all. I would talk to your BCN about what tests are being done and when.

Good luck.

Debx