Hi Karen,
thanks for the words of encouragement - it’s good to hear some positive stories as all you tend to hear in the press are the bad ones
keep smiling
Jo x
Lulu that is terrific-the Canadian research showed 8 years rather than 6.I think taxotere,horrid though it can be,is a great stride in the treatment of tnbc.
Valx
Hi,
just been to see my oncologist and I am to have 6 doses of EC (epirubicin and cyclophosphamide) can anyone tell me why I might be given these drugs when some others are given FEC or Tax (hope that’s right) Any help would be appreciated.
Jo x
They dont always use taxotere if you have no nodes involved as they can only use it once in a lifetime, and as tn has so few backups ,if the cancer does recur,some oncs like to keep it in reserve in case it’s needed.
lots of women who have negative nodes who are triple negative do still have taxotere as it still recurs more often than those with other types of breast cancer, however the majority of women diagnosed with node positive or node negative triple negative disease do well… and many health boards use the node status as a cut off between getting taxotere or not as there is no national guidelines so its down to the individual consultants to decide what is best for you.
taxotere is considered the gold standard treatment but it does vary across the country… i didnt get taxotere either even though i requested it and had different chemo to the one you are getting too i had E-CMF… the E is epirubicin and it works particularly well with triple negative breast cancer as well… the good thing about your regime is you are getting 6 doses of epi (i only had 4).
the treatment they give is the optimum treatment that they can give without causing unnecessary toxicity but reduce the risk of recurrence or progression… they obviously think that for your particular cancer (and they are all very different) EC will reduce your risk of recurrence significantly.
the epi makes you pee pink and its that chemo which makes your hair fall out too normally from around day 14-17… the C is cyclophosphamide and that can make you get a pain in your nose and face while its being infused.
good luck
lulu xx
Hi Lulu and Horace,
thanks for the answers, as you say everyone seems to get something tailored to their exact diagnosis. Don’t like the sound of the pink pee and the pain in the nose and face! Had a feel of a cold cap and I don’t know if I could stand one my head - might give it a miss.
Jo x
and the ‘f’ can give you a very odd sensation down below 
When I had chemo I had private health insurance which is why I got taxotere.The NHS hadn’t licensed it then for primaries though there were some trials going on.
Valx
Hi All
Just having a read through some of the comments regarding the use of tax. Find it all a bit confusing. I was diagnosed 3yrs ago with inflammatory triple negative BC, After FEC, mastectomy and radio, I was told that I had 4 out of 8 lymph nodes affected but had been removed during surgery. Alas in Jan 2011, I was told it had returned to my sternum, lung and lower neck/shoulder nodes. I am currently on a clinical trial involving taxotare and carboplatin. I have been given tax at present (3rd dose down, 3 to go) but does/has anyone had carboplatin?
Hi lila
I’m stage 4 triple neg also. Iwas dx jan 2010 + had a recurrence within weeks of finishing chemo (fec + tax so tax didn’t do it for me). I’ve currently got mets to chest wall + superclavical nodes + started carboplatin at the end of jan. I wasn’t eligable for the TNT trial which you are on because I’d aleady recently had tax. Carbo is easy compared to fec + tax, minimal side effects just a bit of fatigue, mild tummy probs, haven’t lost my hair etc. I’ve just had a ct scan to check how treatment is going + I’m delighted because there has been no progression + my nodes have shrunk significantly after just 3 treatments Im praying this response continues…
Are you having a progress scan mid way through treatment? Tax has an excellent reputation + my experience was VERY unusual. Wishing you all the best hope it blasts the little f*ckers
tina x
Hi Gingerbud
Just had my scan today. Get the results next week. All will depend on the results for the TNT trial. Fingers crossed the tax is working. Still managing to go to work at the moment but will be giving it up in a couple of weeks as I’m getting really bad neuropathy in my hands and feet and have been told that it will get worse. Other than the neuropathy and tiredness, I have had very little side effects with the tax compared with the FEC. Even my PICC line is behaving itself. Had a hick line last time which was a nightmare.
Must admit I hate the dexamethasone regime before and after the tax. I become a right moody bitch. My 10yr old jokingly says things like ‘ooh mummy smash’ and mummy angry’ as if I am the incredible hulk, it does help as I can only laugh at him when he says it. Bless him.
I am so pleased to hear that the carbo is working for you. Even better that there is less side effects. Hope the carbo continues to do its job and fingers crossed.
Lila xx
Hello there
I`ve just been diagnosed with IDC - what does triple negative mean?
I`m concerned about the operation ahead.
Best of luck x
Lila fingers crossed for good scan results next wk xx
tonibelle - triple neg means the cancer was not hormone receptive (er or pr) nor was it receptive to the Her2 protein. Basically when diagnosed with triple neg bc, there are no follw up treatments once chemo + rads are complete. Most bc is hormone driven only about 10% is triple neg. This is because hormone drugs like tamoxifen + her2 drugs like herceptin don’t apply.
Best of luck with your treatment
tina x
Dear Jo
I was diagnosed 8 years ago with Grade 3 triple negative bc with vascular invasion and spread to my lymph nodes. I was treated with
E-CMF - I was part of the original TACT trial which compared Taxotere with E-CMF in treating primary BC. Although Taxotere is now more usually used for primary TNBC I am still here and healthy 8 years later. I think that some chemos work more effectively than others for different people and hope soon they will be able to tailor chemotherapy individually for each patient
best wishes with your treatment
Anne
Thanks Anne for the info, it just seems that everyone has something different, do you know of anyone who has had what I’ll be getting which is 6 x EC. I just keeping worrying that I’m not going to be getting the best combination of drugs but I suppose you have to have faith in the doctors in that they know what they are doing.
Jo x
Hi Tonibelle,
do you know what op you are having?
Jo x
Just been told that I too am TN,had WLE SNB in feb and then MX LNC in march. Had grade 3, 1.6cm stage 2 tumour. only one LN was affected, and no more nasty found in breast…so could say that MX wasnt needed, but im only 36( for another week at least)and I aim to be here in another 36 years time.Waiting to see onc, but BCN says I will prob get FEC and TAX chemo… something to look forward to!!
Have a wedding to go too may 21st hope to still have hair for that, but will have my proper prosthesis by then, so might use my softie as a fasinator!
Good luck to us all and thanks to those who have given their good news stories on here it really is good to here that we can get throught to the other side.
x
hi charlotte,your post could of been me 2 years ago,i had 17mm tumour with 1 node,wle then masc that was clear,good luck with your chemo time goes by really quick xxxxx
Just been given my mid chemo scan results. A bit disappointed with the results as the met tumour hasn’t got any bigger but hasn’t shrunk any. This met tumour is of concern for the onc, as I have been told that it is lying very close to major blood vessels in the mediastinal area. Onc keeping me on the tax meantime with a reduced dose due to the neuropathy. Feeling very disappointed and terrified as I thought I had beaten the disease 2 and a half years ago. Now I have accept that it is not curative but the best they can hope for is for it to be controlled. Its scary, I’m only 36 and feel that I am too young to be dealing with this
Hi Charlotte,
we seem very similar, I have TNBC with 28mm tumour, no node involvement, grade 3 and stage 2A.
I just get more and more annoyed (don’t know who with) the more I read on this site about the younger people getting cancer - it’s just so bloody unfair (not fair for older people either I’m just having a rant!!). It’s got to be something in the atmosphere or what we do as a society, I don’t know but something must cause it.
Sorry I probably havn’t helped you but I just wanted to get it off my chest (no pun intended!!)
Jo x
Good luck to everyone going through this horrible journey
lila sorry to hear your results were disappointing but i think even though its not shrunk the fact it hasnt grown is a good sign… taxanes and platinums (eg carboplatin) have had some really good results with TNBC so hopefully when you have completed your treatment it will have zapped the hot spots.
hugs to all you other ladies
Lulu xx