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Triple Negative

Re: Triple Negative

A positive story:
My friend, was triple neg 13 years ago. She had just finished breast feeding her 4th child. She had positive nodes. Had a lumpectomy, chemo, rads and more chemo. Five years ago she was given the all clear. She is now just battling with stroppy teenagers. What a wonderful battle to have to fight !!
Hope this can lift your spirits
Love to all us triple negs
Maria

Re: Triple Negative

Hi all,
I've not been posting for a while, as so demoralised with treatment and I have missed this whole TN thread! It is lovely to hear from so many of you out there! Or not?!
I was diagnosed in Jan 2007,large 5cm tumour with heavy node involvement, stage 3, and a bad histology report! After mastectomy, had FEC/Taxotere regime and 25 rads. Surgeon wouldn't give me recons for 2 years, as he didn't think I would be here in 2 years!! I proved him wrong, yeah!
Went back and insisted I now wanted my new breast, but I have had severe spinal issues due to chemo, and now he is refusing because of my disability, even though I live with pain on a daily basis!! I have now changed to a female cons, and hopefully she will understand my desire to have reconstruction, regardless of pain. It has been a tough 3 years. I get so jealous when I hear of people with BC doing exciting and adventurous things, while I am stuck in wheelchair! before that I was preparing to do 20 mile ribbon walk, and wrote a book.
I, too, have 3 children, all breast fed. I don't drink, smoke or eat rubbish, but it still gets you!! I sometimes think they feed us stats to make us feel guilty, as if it is somehow 'our' fault, which it IS NOT!
I still have terrible hot flushes since chemo, 3 years on, even tho' I drink soya milk. I make my own juices and just follow basic health rules, but I really think it's just down to the luck of the draw, at the end of the day! I was a nurse, and I am by nature a researcher, and I look forward to the day that they find something to give us triple negs a long term hope!
Best wishes to you all,
Jax

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Re: Triple Negative

Hello

Joining this thread a little late, but i am too TN i had WLE to remove 18mm lump and then went on the have AC x 4 /Tax x 4 every fortnight then 31 sessions of rads I had 24 /28 nodes involved and i saw a copy of a letter my surgeon wrote say my progosis was poor due to high lymph node involment!!!! wish i hadn't seen it , but still intend to fight this. As for diet i ate a pretty health diet prior to dx , had 3 children breast fed them all was fit not over weight but did like a drink (still do). I currently see a nutritionist and its quite interesting and helpful, she is into supplements , but not sure i agree with her if you eat a healthy and varied diet. I have dicovered a green tea i like ( most seem to tast of poo) its from Tea Pigs (white shark) , its not cheap but i make a pot and manage to drink it all.

rhi xx

Re: Triple Negative

I'm reluctant to weigh in on the diet front as I know that there is so much written about it and many people feel empowered by taking control in this area.

My feelings are that if there were strong connections between food and breast or any other cancer (other than smoking related lung cancer) the connection would have been made by now.

Obviously a healthy diet and lifestyle is of great importance in terms of general well being and strength but I sometimes think this only changes things at the margins with genetics playing the major part in our health.

Margins are, however, important and can make a difference but best not to beat ourselves up. Balance in everything until they find out more...

....maybe greater body awareness and more regular check ups (for we older ladies) are helping with diagnosing this disease more often.

Being a bit of a devil's advocate here as I would love to hear others' feelings, ideas, thoughts.

Hope you're all feeling well today.

love and hugs
Lee x

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Re: Triple Negative

PS fighter - you may have tipped the balance for me with mediterranean, Indian, Asian cuisine - yum!!

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Re: Triple Negative

Hi fighter

Thanks for that I have just ordered it after hearing all you have said about it. When I was firstdiagnosed a wellmeaning friend gave me this diet list and pages of do's and dont's. Honestly it showed no understanding of what I was dealing with and seemed to have no scientific basis for it whatsoever. Also totally wrong to make people think they can 'cure' cancer with their diet - or that it is somehow our 'fault'. Prior to being diagnosed I always ate healthily, avoided additives, cooked from scratch, organic veggie garden, very little processed foods etc. Always been slim, very active, breast fed all my babies etc etc. None of us 'why' we got bc and it makes me sad to think of women beating themselves up looking to blame themselves somehow.

Anyway this book sounds very interesting and I like the sound of it - more holistic than lecture - so will let you know what I think. I do think that your attitude towards bc certainly improves the qulity of your life and therefore your overall wellbeing.

Lots of love to you all. Anne xx

Re: Triple Negative

Hi Anne and everyone,

Anticancer is not a diet book it is more of a way of living, in a nutshell here are the key points to avoid cancer:
-Mediterranean diet, Indian cuisine or Asian cuisine with lots of fresh fruits and veggies and less refined sugars and flours
-serenity and joy in your life
-support from family and friends
-acceptance of self with one's values and past history
-regular physical activity (at least 30min a day, even walking counts).
So nothing too difficult to implement and probably pretty obvious for some of you out there. The book combines various topics and helps give hope for all of us triple neg who have a type of BC with a very high chance of recurrence.
Take care,
Love to all

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Re: Triple Negative

Hi fellow tn's

Thanks for your good wishes Emma & Scaryfox. Got my first blasting today and 3 more to go so hope that kills off the little b...... Can't believe it but I have also a gland popped up just above my collar bone - what next! Emma - and I hope you are all enjoying your trip to leggoland. Good idea to have treats before chemo, I do hope you don't have a difficult time.

Tina - I hope you are feeling better and side effects wearing off.

I'm afraid I'm a bit sceptical of diet books with unproven claims but I do understand how good it feels to do something to help feel you are in control especially with TN. There is good research that a low fat diet and excercise is proven to help further spread with TN. The late great JaneRA has put previous posts on this section relating to them well worth having a look for. There are also stats that show that the longer you have TN with no further problems the less chance you have of developing them.

Hope sun shining on you all.

Anne xx

Re: Triple Negative

Can also strongly recommend the anti cancer book. I only read it a few days ago, and am following it diligently. A lot of the stuff in it was new to me - and shocking. Interestingly having felt really down for the last couple weeks after finishing chemo (having expected to feel much better) - reading the book has really cheered me up. I think there is a lot to be said for making positive changes to increase the odds, and the feeling of more control that gives. I have surprised myself actually. I also feel physically better already - more energy and my post Tax aches and pains have receded a bit.

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Re: Triple Negative

I'm so sorry to hear about your secondaries bydand, hope it gets blasted tomorrow!..scaryfox, sorry to hear your news too... I have a large lymph node on my neck, had an ultrasound on it in March, they said all looked fine, doc said I am probably fighting off an infection (havent had cold etc for months)... then got my dx of IDC beginning of April. My lymph node is still large on my neck but doc yesterday said it feels fine still! I am just worried with you saying you have a lumpy neck?

Looking forward to my anti-cancer book arriving. I've been having green tea, a spoonfull of manuka honey every day, 2 brazil nuts, garlic capsules and soya milk on my cereal.... will be nice to have just some idea of whats good instead of eating everything that people suggest!

I found a video on YouTube called 'Blueberries: A Triple Threat Against Triple-Neg' so I have bought Innocent smoothies with Blueberries!

Anyway we're taking the kids to legoland tomorrow, back Sunday. A little treat for them before chemo starts.

Emma x

Re: Triple Negative

Agree re Anticancer book, it helps with feeling in control of your health...I had 1st round of FEC end of April and have been changing my diet, beauty products use and also various things as recommenced in the book....today I had my blood test and my blound count is good and my immune system working well...I'm sure the Anticancer died helped boost my immune system....for those sugar lover, agave syrup is super sweet and low GI so ok to consumme. Anyone going to Younger Women support group at Breast Cancer Haven in London this week?

Re: Triple Negative

Hi all,

hope you're all feeling positive today!

Tina, Happy Birthday to your one year old. I just can't imagine how difficult it must be for you dealing with a little one as well as everything else.

I wish you strength but hoping that you were able to enjoy you little one's special day...such a landmark!

Scaryfox, I am sure these weren't the results you wanted but focus on the positive news that your other organs are fine. Just imagine the Xeloda reaching all the parts it needs to and doing its job. Stay strong, we're here for you to share.

lots of love
Lee x

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Re: Triple Negative

Thanks to Lee & Anne for your kind words.

Have had results, cancer secondaries in lots of lymph nodes (very lumpy neck) but doesn't seem to have reached other organs yet. Can feel the lumps growing daily though, very scary! Surgery not an option apparently. Have started Xeloda...

Can also recommend the Anti-cancer book - defo best book I've read on cancer and I've read lots since diagnosis!

Best wishes all x

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Re: Triple Negative

Hi there! I'm Tina + I'm 32. I was diagnosed 27th jan 2010 with tnbc. Grade 3, 39mm mass and was lucky to have just one affected lymph node. Had a mx 12days after diagnosis and am currently having chemo (fec- tax). I scared myself half todeath googling tnbc + am trying to be as positive as I can aboutthe future as I have a baby who is one tomorrow + so have everything to live for. My onc is very optimistic + I am too. I'm also Reading the anti cancer book + was v.surprised to read that sugar feeds cancer! That should knock my choc addiction into touch! I've just had my 1st taxotere + I'm suffering quite badly. Hoping I can move out of bed tomorrow for my little mans bday...
Anyone going the younger womens forum next wk in sheffeld?
Best wishes to you all
tina xx

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Re: Triple Negative

Hi Scaryfox, like you I too was on the wrong side of a good prognosis and now have secondaries in my spine. Just waiting for more rads to very painful spot on spine on Wednesday - can't wait to get it blasted!! Hope you doing ok.

Anne xx

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Re: Triple Negative

Janey, yes it's the book that Emma has just ordered. It's by Dr David Servan-Schreiber. I have found it very inspiring. When I was going through chemo and feeling that I was in the lap of the gods and just had to hope that the chemo and rads would work, it made me realise there were things I could do myself to improve my chances of surviving this. I think especially when you are TN and know that there are no drugs they can give you after chemo and rads, you need to feel that you are doing something. And I think in a way it also helps that the author has had cancer too and is speaking from personal experience and now doing very well when his prognosis was not so good!!

So I would definitely recommend it!!

xx

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Re: Triple Negative

Jayney, I have just ordered a book called Anticancer: A New Way of Life from Amazon, it was £8.98.

Hope that helps!

Emma x

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Re: Triple Negative

Rawlie, do you mind me asking you about the anti-cancer book. Who is the author?

Thanks

Jayney
xxx

Re: Triple Negative

Hi Scaryfox,

sorry about the secondaries and wish you strength and hope the results you are waiting for give you good treatment options.

Lee x

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Re: Triple Negative

Hi Dawn, v small tumour, clear margins, no nodes. Don't mean to scare you - I was just VERY unlucky to be on the wrong side of a good prognosis. I was doing really well, had clear checkup only weeks earlier, but got a nasty virus which seems to have triggered an autoimmune disease that has complicated matters - immune system is vital, look after it! xx

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Re: Triple Negative

hi scarey fox, im sorry about your seconderies,what size tumour did you have did you have alot of lymph nodes?,i hope you dont mind me askin,take care dawnxxxxxxx

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Re: Triple Negative

Hi just registering here, as another triple negative.

Just been diagnosed with secondaries, scan results later to confirm where/what extent, but they did mention they are also testing the biopsy results to see if my cancer may have mutated when it spread (happens sometimes apparently). If it's sprouted any ER, PR, HER receptors that's obviously good as there will be extra treatment options. Otherwise just Xeloda probably....

x

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Re: Triple Negative

but i am pr pos and on tomoxafen

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Re: Triple Negative

everybody else that was havin chemo same time as me was havin tax,they was just me on 6 fec it could of been because mine was only 1.7 mm but i did have 1 node im gonna ask the onc next time i see her

Re: Triple Negative

I had 4xfec and 4xtax and had no nodes involved.My tumour was 2cm.I had a very low cost health insurance policy[with Axxa]which only covered cancer/stroke/heart attack so that is why I had the regime originally.My chemo nurse said she wished all tn patients could have it.Then half way through my treatmet[early 2007]tax was licensed by NICE for primary bc and my onc said he would be advocating it for everyone with nodes involved and for all tn over 1.9cm.
Its the old postcode lottery again[I am in Shropshire].
Vx

Re: Triple Negative

Hi all,

I believe that the regime of 4 x EC followed by 4 x Taxol is the most recent regimen to have been shown to achieve very good results for TNB. I believe it is known as the third generation of treatments and this is not, unfortunately, always available to all on the NHS.

Presumably they are fine tuning this even as we speak and since I finished chemo on 3rd November things may be even further along by now.

Lee x

Re: Triple Negative

I had 3 FEC and 3 TAX, my onc told me he just wanted to 'blast' my body . Didnt want to take the chance of my system getting used to the FEC, so after 3 FEC, going in with the TAX would shock it and hopefully get rid of any stray cells! I think its just different Oncologists just have different methods
x

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Re: Triple Negative

Drabble, luckily I didn't have any nodes affected, they just removed them all anyway at the same time as the mx. I must admit, I've been wondering why some people have tax and some just have fec!! Does anyone else know?? Each person's treatment seems to vary enormously even when the dx looks the same!

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Re: Triple Negative

rawlie how many lymph nodes did you have affected,im askin because i had fec with 17mm .grade 3 tumour and 1 lymph node,it has worried me why i didnt get tax xxxxx

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Re: Triple Negative

Hi,

I'm also triple neg. Diagnosed Jan 2009, Grade 3, 1.8cm lump removed, then mx and node clearance. Chemo (FEC) and rads. Also took part in Beatrice trial (Avastin) for 1 year. Treatment finished in March 2010.

Also read Anti-Cancer book which helped me to take back control of my life and do positive things to stay healthy. So far so good. Annual check up went well!!

It's good to be able to share with others in a similar situation!!

Rawlie x

Re: Triple Negative

Hi ladies,

yet another triple negative here. Diagnosed April 2009, WLE carried out early May, no node involvement, grade 3 1.7mm lump removed. Margins not clear...DCIS right up to margins so mastectomy recommended with immediate reconstruction. This was carried out in June (LD flap). Chemo started in July 4 x EC and 4 x Taxol which was meant to be dose dense with special white cell stimulating injections but reacted so badly to the first one we went 3 weekly for the ECs and dropped one of them then I managed to do Taxol 2 weekly and keep my cell count up!

Chemo finished early November, then I had another op in January to replace the expander implant which had gone hard. Things much better now though another op could be in the offing to split the nerve...anyone had this?

Had my first mammogram last week on the unaffected boob and it looks okay.

Almost feel "normal" now but do have lots of joint pain...put this down to getting older but it's possible that the chemo exacerbated it. Still have neuropathy in hands and feet but I'm getting used to it!

TNB was a shock, but not when I was first told...I thought it sounded pretty good to be negative for oestrogen, HER2 and progesterone...yeah...then I went home and googled it. Still they are making great strides and I'm glad not to have hormones mucking up my system just when it's all settling down!

I'm a very positive person and just live for the moment like you Lulu. My surgeon amd oncologist don't think that my cancer is likely to be genetic which is something of a relief for my two daughters.

Stay strong all.

Lee x

Re: Triple Negative

Little H, good to see you on here! I am having trouble with neck and shoulders, but think this may be linked to the arthritis to! cant have massage either, which doesnt help!
another trip to london is being talked about, cant remember date yet, but nothing sorted for definate. will let you know, and yes, duck tour would be good!
xxx

Re: Triple Negative

Also triple negative, DX with IDC in April 2010 at 34yo, 5cm tumour, no in-situ carcinoma and no vascular invasion. No signs of lymph nodes affected so far (after mammo, CT, MRI scans) but who knows....
I started with chemo first (FEC - 90) on Thursday 29/04 and it was ok. I'm going to have FEC every 3 weeks for 12 weeks and then switch to TAX for another 12 weeks. The aim is to reduce the size of the tumour to save as much breast as possible.
1 chemo done 7 to go!
I'm trying to stay positive, healthy with eating lots of fruits and veggies and generally taking care of myself. So I will try to attend the next LGFB workshop as even though I tried the cold cap on and it wasn't that uncomfortable, my scalp is already super itchy.
I'm reading one good book which I would recommend: "Anti-cancer a new way of life" by Dr David Servan-Schreiber, a cancer survivor.
Take care and good luck to all. xx

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Re: Triple Negative

It's Look Good Feel Better.

Fab wee afternoon out messing about with makeup & you go home with a lovely bag full of goodies! 🐵

Awww.....the shaving of the head is difficult isn't it? No matter how prepared you think you are it's still one of the toughest things when it does actually happen. Took me a few days to get over the loss of my hair, but I surprised myself in that it didn't bother me at all after that! I went out baldy quite often & ditched the headwear totally when I had enough fuzz to keep my noggin warm!

((Hugs))

Hxx

Re: Triple Negative

sorry ladys wot does lgfb mean i have chmeo brain here ?feeling down today had to shave all mt hair off tonight 😞

Re: Triple Negative

Hi,

Billiegirl, yes I'm TN, but no genetic testing as in my case nothing to do with genetics.

And I can also recommend the LGFB sessions, I had a great time at the one I went to, after chemo had finished, it was the first time I noticed my eyelashes growing back and it was fab!!

Take care ladies
Shannon
x

Re: Triple Negative

i too am another triple negative lady was Dx with grade 3, 1.9cm IDC in april 09 and had WLE and SNB... no nodes but extensive LVI then had epi-cmf chemo and 25 rads.

i also had ER positive cancer 3 years before that when i was 37 and was tested for BRCA then but came back negative.

but when i got the new primary i was rechecked in oct for the BRCA genes and found to be BRCA 2+ve in January.

mandy i went to a LGFB day after i started chemo and found it really good.... would def recommend it.... hazel and i also went to one of the BCCs young womens forums which was great too as most people who have are younger so if your under 45 i would recommend that too.

like most of you i was shocked when i was first diagnosed as TNBC... but now gotten used to that and just live for the moment.

Lulu x

Re: Triple Negative

hi all!
I am another triple negative, dx sept 09, WLE oct 09, 2.5mm lump, 14 nodes removed all clear but the senitel one wasn't. Had 6 lots of TAC chemo then a five week break, halfway through 15 rads plus a boost, then thats me done. Feel a bit worried about no follow on treatment but im sure i will get my head round it. Have also been dx with lympheodema and nerve damage to left arm so waiting to see therapist for that.
Hope you ladies try all the therapies that are offered, I went to a Look Good Feel Good day at Exeter Force centre, it was brilliant, also having massage treatments at same place, realy de-stressing!
Good luck to all
Mandyx

Re: Triple Negative

Yep, I'm another triple neg. Dx Jan 09, Grade 3, 4x EC,3x TAX,which shrinked lump from 2.7cms to 1.6cms after first dose. Had a lumpectomy,only about 2mm left,then rads.
I did freak out abit when I first discovered I was TN but now I'm glad not to have to take any more tablets. Not due to see anyone until my first mammo in September.
I'm back at work on a phased return and have been having physio for past few months for tendonitis in shoulders and general tightness in muscles in neck & back. Anyone else suffered with this since treatment ended?
Debs, lovely to hear from you,really glad your mammo went well.If you're ever in London.....still haven't done a Duck tour!

Take care,
Love Little H xx

Re: Triple Negative

Hi all
I am triple neg to. Dx April 08, Grade 3, 4cm lump. Had chemo first, 3 fec and 3 tax, then WLE, SNB (nodes clear) and 23 rads. Chemo worked and lump reduced to almost nothing, but had breast reduction at same time as wle. Been to hospital today for mammo, and good results. Spoke to doc about concerns over being triple neg, but there are lots of us out there and stats are good.
Good luck to you all and will keep an eye on this thread.
Deb x

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Re: Triple Negative

I am triple negative, grade 3.

ALso a BRCA1 carrier, so will be having risk reducing surgery, as I cannot continue to live with the huge risk.
good luck to all

Re: Triple Negative

I was tested in April, told the results would take four months.

Re: Triple Negative

hello shannon are you also triple negative? is any one having genetic testing?

Re: Triple Negative

Hi Ladies,

DX July 07, tn, 5cm lump (but not like an apple!! More like a flat disc shape..) and lump under my arm, so obviously nodes were affected. Had chemo first, 4 x EC and 4 x Tax, then mx in Feb 08, found 2 nodes had been affected, but all cancer cells there dead. Also had immediate recon (implant). The lump shrank quite quickly during treatment, only 1mm (pin-head) lump left when removed. Had 25 x rads. Did REACT trial, taking non-hormone drugs for 2 years, finished this March. So far so good, still clear, and fingers crossed.

Shannon

Re: Triple Negative

I'm triple neg too. Diagnosed Oct 09. Mx Oct 09. Finished 6 cycles of chemo (FEC) on 12th March. Been spared Rads though, so I'm done apart from regular checks.

Re: Triple Negative

Hi

I'm another triple negative. I was diagnosed in Mar 09 with 6cm, grade 3 IDC. Had a mastectomy first then chemo (3FEC+3TAX)and 15 rads. Now passed the first anniversary and feeling well.
Joss

Re: Triple Negative

me to just find out i have tnbc i have 8 cycles of chemo to do had one having my next one this friday coming. went to see my onc yesterday i said i cant feel my lump any more see had a look and feel and said thats a good sign the chemo working so it was reduced on first cycle my lump was 5cm a size of a apple is that right not sure? that what ive been told i know it was big a hurt like hell. has any one have a lump reduced on first cycle ???

Re: Triple Negative

Me too, but I only got the diagnosis last week, and don't know what treatment I will have. (had mastectomy 8.4.10) and will the onc next Monday.
All the best to all of you.

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Re: Triple Negative

Hey

I'm Triple Negative too.

Was dx July 09, mx, 8 cycles of Chemo & then 5 weeks of rads. I find out next week if I need more chemo.

Hx

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Re: Triple Negative

Hi horace and RhodaBee nice to hear from you both. None of us want to have this disease but it is nice to know you can talk to someone in the same boat. My BC was just very small in the tissue in the breast in a six o'clock position from the nipple. I had chemo first as I noticed something was wrong as my armpit was hurting. They found cancerous cells there. I have had 3 treatments of Epirubricin (hope I have spelt this correctly) 3 (one dose two weeks straight) with a two week break of CMF, operation which found 3 out of 18 lymph nodes active. I had a few live cells (which sounds a bit scary)and they just want to be precautious so am having 3 x Dx a little bit disappointed as I am going to lose my hair again but never mind. After this will have rads possibly 15 but this will be discussed. Anyone had chemo first not really come across many. Also there doesn't seem to be very much info besides having chemo with triple negative.

Looking forward to hearing from you both.