Triple negative and discussing chemo

Public Archive
41

hi tina

i know of two other ladies similar to you one had FEC-t before surgery and the other had surgery first but both got recurrence… they couldnt say whether it was down to the chemo or which chemno it was or if it was just that the tumours were so aggressive or there was already serious spread prior to treatment.

all the things i have mentioned are general… so there will be people on either end of the spectrum… there are women who had large grade 3 TNCB, with full node involvement and given CMF only chemo 10 years ago who are walking around and basically cured, but there are others who had small, lower grade tumours with no nodes treated with fec and tax who have had immediate recurrence… unfortunately none of us know how our bodies are going to respond to chemo or even how our bodies respond to tumours.

the neoadjuvant chemo is a fairly new concept in the UK and i dont think all units have embraced the concept. i think the research was based women under 50 (those over 50 it was found to be detrimental), but note sure if it was based on only those with large tumours, which were grade 3… also not sure if its based on pure TNBC eg 000 or if Er poor tumours were also included and how units decide to use this research is always the eternal mystery anyway.

Lx

42

Interestingly I was told that tnbc was unusual in over 55’s but when it occurred it responded exceptionally well to chemo.I dont know why my 2cm grade 2 lump with no node involvement,no lvi and clear margins was treated so aggressively wuth 4xfec 4xtax and 15 rads but I am glad it was-even if it recurs I know everything possible was done.However that was 4 and a half years ago and medicine moves on.I am sure all the oncs are responding appropriately to individual cases and,sadly,for some the result will not be what was hoped for.
Good Luck everyone
Valxx

43

Hi everyone
I’ve just read this thread and am now worried about what chemo I’m now receiving and would welcome your views.
I’m grade 3 Invasive Ductal with clear nodes but secondaries in my neck lymph glands plus I’m TN. Diagnosed with secondaries at same time as primary BC one month ago

I’ve been put on weekly taxol plus avastin and am concerned that FEC has not been mentioned. Is FEC stronger than Taxol?

I told my Oncologist at my first meeting that 'quality of life ’ is most important to me - now i’m wondering if I’ve done the wrong thing - I’ve had 3 weekly Taxols and virtually no side effects (I know I should be happy about this but I’m worried that I’ve chosen a soft route but with less effect)

Sorry to waffle - I feel like I’ve so much to learn and at the moment have just left everything up to the medical people

Thank you
xx

44

hi Linda

fec is a 2nd generation chemo but taxol is a taxane which is a 3rd generation chemo and they are the ones seen as gold standard for TN… fec is usually given for primary cancer anyway so your treatment may be different if you were diagnosed with mets at same time… heard lots of positive things about avastin too, which is usually given as part of a research trial.

good luck with it

lulu x

45

Hi everyone,

I’M SO CONFUSED - I too (as some of you know)am triple neg and I had a 28mm tumour removed with no node involvement (invasive ductal carcinoma. Had LWE & SNB. I have started on 6 x EC (I have a missing f …) does anyone know why. They kept saying at the hospital we are giving you the gold star treatment, but it doesn’t sound like it after I’ve read what some of you have had to say. It’s just so annoying that each hospital/onc have different ideas. Can anyone help a confused lady …

46

Hi all

I am about to start FEC on Tuesday next week for a 30mm High Grade 3 IDC, No node involvement, Triple Negative also. I discussed with the Oncologist if I could be considered for 3 x 3 of FEC and Tax and whilst it was not a firm NO it was pointed out that FEC is the gold standard for TN and that the success rate with it is very high but Tax is used if there is node involvement. That said, have been told they will look into the issue with Tax for my cancer and let me know if the stats show it could be worthwhile.

I am getting concerned now too Darlojo, I fully appreciate that not all cancers are the same and each one is individual to a degree but the treatment for Triple Negative does appear to be so different amongst oncologists. I am left wondering AM I getting the best I could get, the gold standard, everything thrown at it to lower the risk of secondaries!!!

Does anyone have any idea???

Tracy xx

47

Hi all
I understood that I was getting 4 AC and 4 paclitaxel fortnightly as I was TNC and had lymph involvement and this was considered the most up to date treatment for my type of cancer. Like Rhian I was also given a dose dense regime every fortnight which having now read up about it is believed not to give the cancer a chance to grow in between cycles. My oncologist said that TNC cancers often respond really well to chemo but I also met ladies who were TN under the same oncologist having different chemo regimes, lots of FEC. I’m not clear what the criteria was for determining who gets what. Xx

48

Thanks for your reply lulu :slight_smile: Its a minefield isn’t it. You would think there would be a standard regime for tnbc but looking at the different treatments we’ve had/ are having, it seems like anything goes!! As you say we are all different + recurrences can happen whether chemo is given before or after chemo, and regardless of the particular drugs given (same goes for hormone receptive cancers).
I think if I was given the chance to start afresh with treatment knowing what I know now, I would defo push for 8 cycles given fortnightly (dose dense) to maximise the intensity of treatment. It seems fairly standard in the states to do dose dense chemo for tnbc + their survival rate is much better than ours.
In my hospital, they seem to only offer fec/ fec-tax/ or epi-cmf. I haven’t heard of anyone having chemo 1st, nor anyone having a dose dense regime, nor having drugs different to the 3 regimes mentioned. It seems some oncs think outside the box moreso than others…
Good luck everyone- I don’t think there is any ‘right’ answer when it comes to selecting chemo for tnbc sadly. Just ask lots of questions + go with your instinct+ push for the most aggressive treatments available.
Tina x

49

Tracy and others,

I too am TN grade 3 no node involvement. I am due to see onc on Wednesday for my treatment plan so I will let you know what he recommends for me. At least I now know what treatment others have been given so I will be able to ask relevant questions.

Hope you are all enjoying this lovely weather x

50

it is the E and the A in the regimes FEC, FEC-T, AC, EC, or E-CMF that do the work they are known as anthracyclines and are second generation chemo which has been found to be very effective in treating TNBC… when they are researching they always start off testing people with secondaries before rolling it out and then testing on primary cancer so thats why some people who are diagnosed with mets are on different regimes.

taxanes are new and more recently been researched and found to be very effective in secondary TNBC as well as anthracylcines and some would argue that perhaps they are just as effective… there are ongoing tirals for them… but so long as you have at least 4 epirubicin or (adriamycin) or you have at least 3 in combination with tax then i think the difference between them is small…

there are other drugs getting trialed too which are platinums which are having some good effects, but it all takes a while to research… there may at some point be a consensus but unless something NICE makes an actual guideline its unlikely to change as it will be down to individual oncs recommendations… a bit like many things are treated by GPs depending on their own experience.

a few things to bear in mind all you TNBC ladies… that even though the mortality rate is higher in those with TNBC the average overall survival for TNBC to 10 years is 77%, for non TNBC its over 90% so its still lower than ER BCs but probably a lot higher than many of you think.

also the risk of recurrence is highest in the first 3 years… if you havent had a relapse by then its unlikely to happen and if you reach 5 years you are pretty much considered to be cured (obviously nothing is 100%).

TNBC has only been identified for around 5 or 6 years so it may take some time to get all the information.

and there are at least two types of TNBC… there are ones which as basal like which are positive for cytokeratin 5/6 and/or for EGFR1 (HER1), where as there are a rarer subset known as 5 neg which are negative for both these other factors… so things like this may sway the type of treatment you have too.

and they may find other markers in the future which could potentially have a bearing on treatment options.

and for those with a family history TNBC tends to occur more so in BRCA1 mutation carriers, although you can get it if your not a carrier… it also more likely to occur at younger age of onset (which again could be linked to family history) but women over 50 and even over 55 do also get it, but not so frequently.

hope i havent bombarded you with science… i just find the whole thing very fascinating.

lulu x

51

Hi Lulu

WOW thankyou for all that. As you say it is the E or A bit that seems to be consistent with everyones treatment whether that is FEC EC FECT or the EPI CMF or AC regime so there is is some consistency about the treatments received. Again with TN only being recently being identified it probably will take a while until there is a “one for all” regime.
Thankyou for all the info it must have taken you ages to get that and write it all out but it is interesting as you say to hear about everyones different onc decions re treatment

Hope everyone is OK

Jill x x

52

Lulu
Just wanted to say thank you for replying to me the other day. You really do sound like you know your stuff. I feel like I’ve learnt an awful lot in a short period of time but then realise by reading these threads there’s a lot more to know.
Its great that there are people like you, that take the time to share their knowledge - THANK YOU

53

Hello ladies

Lulu thank you so very much for all that information, like you I find it all very interesting and you have managed to put my mind at rest a little and for that I am most grateful.

It is first chemo for me tomorrow and I can feel my anxiety levels creeping up and I have that oh so familar knot in my stomach at the anticipation of it all.

Hope you are all well and have enjoyed the weekend.

Love & hugs
Tracy xxx

54

Good luck tomorrow Tracey, hope all goes well. Thanks Lulu for the info, helpful wherever we are in this journey x

55

thanks ladies im glad you all found the info helpful.

tracy good luck tomorrow… i do hope you find it a bit of a non-event like i did… was such an anticipation and thought id feel truly awful within minutes but chemo day ended up being shopping and curry day LOL.

my sis was my chemo buddy and we always had a really good laugh… fingers crossed you dont find it to bad.

Lulu xx

56

Hi everyone,

Lulu - do you fancy becoming a cancer guru, you know so much, thanks for the information.

Tracy - good luck for the fist chemo, I hope like me you dont have any SE’s, I dont appear to have any at all, I feel more tired but that could be because I’m ancient and have a baby! good luck

Jo xxx

57

Hi everyone,

I saw my onc today - I will be having 8 fecs followed by 4 weeks of rads. However, depsite being previously told I am TN, he told me today that although tamoxifen is unlikely to be of benefit, it is worth trying because I am slightly ER positive. So it really does seem that everyone with BC has slightly different requirements and we can only hope that we each receive the very best treatment for our individual cases.

Tracy, I am sorry your first fec did not go so well, hopefully it will improve from now on.

Best wishes.

58

hi I am glad to have found this forum as don’t live in England and no one here seems to have heard of triple negative b c. I finished 6 fec and 33 radiotherapy at end of feb and am worried that i wont be aware of re occurrence. feel scared most days as my consultant stressed how aggressive,the cancer was,stage 3. I have quite alot of pain and hotness but cannot feel any more lumps.not due back to consult till june. Has anyone experienced similar discomfort post treatment. what kind of follow up plan have you been given. lunamoon

59

unable to help you but i thought I’d bump it up for you

60

Bump