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Triple negative and discussing chemo
Mon, 18/04/2011 - 19:49
#1
Hi Folks
Looking for some advice. I am TN diagnosed Feb this year. Have had Mastectomy, no lymph node involvement. Started chemo 3 weeks ago, FEC. Ongologist has prescribed x6 and 5 weeks of rads. Appointment arranged with Ongologist to discuss chemo as I am unsure why I am not getting FEC T. So I am clear is FEC T,(fec and tax),and appears to be the most common form of chemo for TN. What do others think ?
Many thanks
Jo
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Hi there
maybe your not getting tax as your nodes were clear- the nodes seem to be the decider when it comes to tax. But you are right to question the decision as you want to 'throw everything at it' since there are no follow up treatments for triple negs. There are no guarantees but tax is said to be the gold standard so for peace of mind, push for tax don't ignore your insticts.
All the very best
tina x
I had clear nodes and 17mm tumour. I had 3 fec, 3 tax. I am weakly er positive but my oncologist treated me, in his words, as though i was triple negative. Mine was grade 3 ductal cancer. Other collesgues in the same team said they'd have gone for 6 fec, its a grey area. I'm really glad i had the taxotere as well now. I'd push for tax in your position, and ask for a second opinion if he doesnt. There is a thread called fec and tax (i think) which is very much on this topic, you'd find it very useful. Good luck
vickie
I was TNC but had lymph node involvement. I had 4 AC and 4 Paclitaxel fortnightly. I didn't understand how the chemo treatment worked as all the ladies I met seemed to be on different drugs and different regimes x
Hi all,
I am similar to you, Vickie - slightly smaller tumour, but no node involvement, grade 3 and vascular invasion. Had WLE and finished FEC-T 4 weeks ago. Start rads tomorrow. I am weakly er+ (2/8). I feel that that means I am 75% TN and 25% ER+ although no-one has said so, so I'm interested to see that your onc is treating you as such. I guess mine is too. I am to start Arimidex soon. Are you on tamoxifen or an Aromatose Inhibitor?
Best wishes to those about to start chemo - and to everyone else.
Stella xx
Hi stella, i was 4/8 er+, so am on tamoxifen but don't know how much, if any, benefit it will be as only "vaguely" er positive in their words. I am 37 so pre menopausal at dx.
Thanks folks for your comments tonite. Have appointment tomorrow with Oncologist so will let you know how I get on.
Jo x
i had TNBC 1.9cm plus extensive vascular invasion but no nodes and had epi-cmf.... no tax for me either even though i did request it... but was informed the cost to me personally would be too high! if it was up to me personally it would have been worth it but think what he really means was the cost to his budget would be too high (hmmm cynical??).
stella an ER of 2 is the lowest you get apart from zero so is usually considered negative... the figure is worked out using something called the Allred score and is based on two factors percentage and intensity... intensity is in 3 levels 1 being the least and 3 the most intensive (most receptive to oestrogen) and the percentage is in 5 levels.... level 5 is 66-100%, level 4 is 33-66%, level 3 is 10-33%, level 2 is 1-10% and level 1 is less than 1%.
to get a score of 2 you would have less than 1% of receptors which were only poorly receptive to oestrogen.... 0 and 2 are usually considered negative, 3-5 is considered oestrogen poor and and 6-8 is strongly positive.... the benefit you get from hormones at 2 is negligible as they would only be effective on less than 1% of the cells but some docs think its worth it even for 1%.
the variation seems to be rife up and down the country with everybody having their own personal ideas on whats best.
good luck with the chemo you guys.
Lx
Thanks for the explanation Lulu. I'll have a discussion about the benefits of being on Arimidex if I suffer many SEs.
Whoops - sorry, distracted by phone and pressed submit by mistake.
My onc did say Tax was expensive but would push for it.
Vickie, is Tamoxifen causing you many problems?
I'm 58 so obviously post menopausal, so an AI for me.
Best wishes all. Stella xx
I think it's bizarre how regimes vary for TN patients. Surely they should throw everything at us since no follow up treatments are available? For example, dose dense treatments, 8 instead of 6, strongest chemo options, always rads etc. I often wonder if a more intensive regime might have made the difference in my case. They certainly seem to take a more aggressive approach in the US + outcomes are much better there.
Tina x
So glad I found this thread this morning...........got ammunition for Oncologist this afternoon at our first meeting.
I too am Triple Negative, 30mm lump, High Grade 3 very aggressive in the words of Consultant last week. I know I am going to get FEC but did not expect TAX as no node involvement. I too have been concerned that FEC is not enough but have read on McMillan that TN responds very well to chemo (but does that include TAX?!).
I am going to have long conversation today as I want whatever they can give me to stop this bloody disease from causing secondaries, that is my greatest fear as both Consultant last week and McMillan site make no bones about the fact that TN has a MUCH higher incidence of secondaries but they do not know what feeds the cancer cells.
Thanks ladies, will let you know later what happens.
Love
Tracy xxx
Hi all I am tn grade 3 I had 6 fec 5 tax with no nodes involved unf tax didn't work on me my lump grew while was on tax but also returned a yr after treatment I now had sec to lungs it's so hard for us tn ladies as chemo Is our only option i hope you all get the advice u need pls update with any news tc ladies laura
Hi
I am 3xneg and high lymph node involvment 18/23
my chemo was AC[Doxorubicin & cyclophosphamide]-tax [paclitaxel](8 sessions every two weeks)
Loupylou - you are the first person I have come across who also did a fortnightly regime
Rhian x
I was dx tnbc in Oct 2006 Grade2 2cm no nodes involved-I was given 4xfec and 4xtaxotere followed by 15 rads.I see my onc today[about 4 yrs from end of chemo]and am hoping that ned is still my friend.Tn is at its most aggressive in the first 2 to 3 years after dx so I was glad that everything was thrown at mine from the start.
Good Luck everyone
valx
Hi Rhian
I'm not sure what the criterion is when deciding the the fortnightly dose dense regime. It has been hard going in that no sooner was I feeling human, it was time for the next dose. The upside was that the chemo was over in four months instead of six. I managed to avoid infection until the final dose when I went down with a flu virus which I thought was going to finish me off! Unfortunatly this delayed radiotherapy starting but I'm now into the fourth week of five weeks of radiotherapy. Rhian is a good welsh name so perhaps we were treated in the same locality!
Lou
Hi Lou
I had my treatment in London as i was living there then (2008/2009) but have since moved back to wales.
Yes I agree it was a killer the 4 months became a fog towards the end, and I had to have a couple of blood transfusions that oddly I found harder to cope with the procedure than chemo!! i had 32 rads. How is your skin doing now?
I was doing myine at this time of year , hope you are coping with the warm weather.
Rhian x
Hi all
Laura, what size lump did you have, just wondered if that had any bearing on the TAX. As stated mine is 30mm, I am so worried about secondaries I really do hope they throw all they can at mine so I can at least get a bit of peace of mind knowing they have tried as hard as they can.
It is so scary when you know that they do not yet have an answer as to what feeds the cancer. Unlike the Hormone therapy etc we can only rely upon the chemo and rads with no ongoing treatment hoping with all things crossed that it does not spread.....but clearly it does!
I do hope I am not the only one who is scared, I am being positive and will fight it but god I am scared!
Love
Tracy xxx
Hiya Tracy
me scared too but there are some really good stories out there of 3xneg ladies who get through, keep kicking it in the ar*e girl
hey I am still here and i was given a poor prognosis
my breast lump was only 18mm and wasn't picked up on the mammogram it was the lump in the lymph nodes that sparked my investigations.
love rhi x
Hi All
I was diagnosed TN Sept 05, mx Sept 05, 3.5 cm, 8 out of 32 nodes involved.
4 x Epi, 4 x CMF, 20 x rads.
I felt I missed out not having tax but I'm now over 5 years from diagnosis and still NED.
Gayle
I was like you Rhian, nothing on mammogram when I went for my annual check up a few months before I felt a lump and even on ultrasound it was considered to be possibly another cyst. It was only the presence of a lump in my armpit that led to the biopsies being done. I'm finding the radiotherapy really strange. My lymph surgery area is really painful and wearing a bra uncomfortable. My skin is ok so far. I'm slapping on the aloe Vera gel and using aqueous cream as well. Now I'm on the booster doses for two weeks I may start to feel the burn! I'm struggling with my arm at the moment so referred for lymphodoema therapy. Even with sunscreen on I find it burns really quickly.
Tracey, I'm scared witless of it coming back as well which is why I've signed up for the REACT trial. I don't feel I've got anything to lose really unless of course I end up with the placebo not the drug! Lou x
Hi All
I have been reading your thread as I too was dx with triple neg in January Had WLE and axillary node blue dye sample. No node involvment but had intermediate DCIS 1cm away from main lump that was removed also. Main lump grade 3 IDC? What I do not understand is neither my surgeon or onc have really said anything about the fact that I was TN All surgeon said was " Your cancer is not responsive to hormones" nothing else mentioned It was only after coming on this site I realised it was something a bit different!! I am on 4 x EPI (2 down 2 to go) 4 x CMF and 20 rads. Have the rads planning on 21/6 so I think they are going to do these alongside the CMF does that sound right?? I am a bit of a wimp when it comes to asking questions of the experts sad I know but always believed they know best??? Maybe I need to get a back bone and demand some answers.
Sorry for the essay but would appreciate any info
Many Thanks
Jill
Hi Jill
I think it is quite common for BC specialst not to use the term triple neg, my Onc never used the term, and i have recently transfered to another group of medics and they also don't seem to use the term.
The 'experts' can be rather intimidating but usually if you do ask questions they will repond. Maybe make a few notes beforehand and take the questions you have in with you.
rhian xx
Hi Rhian
I will do that thanks It is nice to know that my 'people' are not the only ones to use the TN term was beginning to think there was something they weren't telling me!!!
Jill x x x
Hi Tracy mine was about one inch and 2 inch I had 2
maybe that's why I had tax yes it's v scary but like most ladies on here some don't return my onc didn't mention tn either I didn't no till I saw onc when was dx for sec was v scared and still am but have got to stay positive kp us posted tc laura xx
Just to let you all know that I had my oncology appt today [4 years since end of chemo 4xfec and 4xtax]and I was ned.
hang in there all of you
valx
Good news Val x
Hi Ladies
Seen oncologist today and he made it very clear FEC x 6 was the standard treatment for TN with no node involvement. After more questions from myself he stated the guidelines and research shows TAX offers no other benefit than FEC, if your nodes are clear. So it is FEC for me. Some oncologist obviously think differently, and that would explain the random prescribing. All this does is bring anxieties for everyone. I feel better about it after discussing my concerns with him, but think people would feel more confident if treatment was more consistant UK wide.
Jo x
Hi Jo
Glad you are re-assured. I guess we are all very different and a one size fits all approach wouldn't be helpful. No node involvement hopefully means that they've got it early and the FEC will do it's job. Keep positive (easy to say I know). Good luck with your ongoing treatment. Lou x
That is interesting-I've never heard of just fec for tn-its usually E-CMF or fecT but guidelines change all the time and we have to trust our medical teams to do their best for us.
Valx
My wife was diagnosed at Christmas with grade 3 TN with 6 nodes infected and spread to nodes in her chest. She had a PET scan at the time, which confirmed the Cancer spread, a terrible time for her and us!!
She was put on a course of 4 AC with a potential of 4 FEC after. She has completed her 4 AC treatments and we have just had the results of a PET scan she had last week, there is no evedince of cancer where previously identified, the best news we could have wished for.
The onc has said that because of the response she has had to the AC, she should have 2 further treatments of AC and then rads with no FEC.
Yet further evidence to the fact that there is no standard as such to treatment
Thanks
pnv