triple negative ask the expert conference

The transcript of the breasctcancer.org on-line conference is now available on:

breastcancer.org/treatment/planning/ask_expert/2008_07/

Hope this is useful particularly for the woman who I promised I would pm but my brain is slow these days and I’ve forgotten who it is! Hope you see this message.

There’s some interesting information here but I, big cynic in a hurry for the cure, don’t actually see anything much new here for anyone who’s triple negative cancer has spread. There’s a lot of research and interest in the lab but not a lot new in medical trials.

Some points I found interesting: xeloda doesn’t seem work particulrly well for trip negs (didn’t for me); yes taxanes should usually be used at primary stage. (I consider myself lucky to have got taxotere in 2004 when most primary bc patients in UK didn’t)

One answer makes much of the evidence that a low fat diet and exercise may lessen risk of recurrence for early stage trip neg. bc. There is certainly some evidence to support this…but the stats are not quoted here and they are staistically significant rather than magnificent. That so much is made of this is I think because actually in terms of drugs there ain’t much going on for trip negs. It mentions platimum based chemos (again haven’t worked for me), avastin(but only in reltaion to it not workign with xeloda), PARP inhibitors (there are very early trails.) Interesting bit too about basal type cancers and trip neg cancers and about p53.

And thoughtful answer about pregnancy after trip neg disease.

Jane

Hi Jane
glad to see you are back, could it be paula 43?
The man from Roche contacted me to send documents I have to be in a patient group. So many rules… where theres a will and all that so I have started the wheels in motion and am joining a Cornish Patient Charity.
I f you pm your phone number we can have a chat, if you dont think this appropriate no problems I am getting very fond of cyberland.

Love Debsxxx

Hi Debs

Just picked up this thread which I find interesting as I am triple neg. Diag in Jan, TAC chemo until June then bi lateral Mastectomy with axillary clearance on right side. Waiting now for seroma to subside prior to Radiotherapy. I live in Cornwall and am being treated at Derriford would love to hear further on avoidance of recurrance for triple negs.

Regards
Nonny

Hi Nonny
Sorry,I am not triple neg I am her2- I was jumping in on Janes thread! Paula is and she has had some really horrid news this week so I think its her that Jane was to pm.
I live in St Ives and go to Treliske really pleased with the team I am under. I am a Mancunian we moved in 2002. I am sure the triple neg ladies will be able to help you.

Love Debsxxx

I am triple neg and I do the low fat diet bit but find exercise difficult because of the long term side effects of taxotere.Vx

I have been diagnosed with stage 2, Grade 3, no lymph node involvement and have had a WLE. I am awaiting chemo on friday this week but have been offered E-CMF Standard as part of the TACT2 trial. There has been no mention of Taxol or taxotere and just wondered if anybody got any information or thoughts on this?
I want the chemo to be as effective as possible as it is the main line of attack for triple negatives.

Annie.

I’m curious about this too as I’m on FEC rather than tax and had a triple neg tumour so am wondering if I’m getting the best available treatment or not. I did also have a tumour which was slightly er+ and pr+ so that may have influenced the decision towards FEC for me, I’m just glad that it’s the max dose and that it’s not suiting me too badly at all. I really hope I’m not being denied a more appropriate treatment because of money or something… gulp.

Hi Annie

If you are triple negative then I would suggest that you discuss with your onc the pros and cons of having a taxane as part of your treatment. (I think taxanes are not part fo the TACT 2 trial.) If your onc becomes defensive then maybe you could consider asking for a second opinion. Remember none of us here are oncologists, just more or less informed patients. You need to have confidence and trust in your oncologists…rememebr of course there are no guarantees with any treatment.

very best wishes

Jane

Hi Annie and Vertangie

I agree with Jane - you need to discuss with your oncologist the possibility and benefits of having a taxane. I am also triple negative, grade 3 with two lymph nodes involved and vascular invasion. I was part of the original TACT trial and was treated with E-CMF. Because of the vascular invasion and the fact that I have micropapillary carcinoma which I was told tends to have a poorer outcome my oncologist was guarded about my prognosis. However I am still well and NED five and a half years after diagnosis. I know that there are no guarantees about my long term survival but just wanted to let you know that even without a taxane there is life after a triple negative diagnosis

best wishes

Anne

Thanks Jane and Anne.

You’re right I should have trust in my oncs plans, but I haven’t actually met the onc who designed my plan at all so it’s really hard to. Another onc explained it to me and there wasn’t really enough time (is there ever I wonder). I’ve just popped over to adjuvant online instead nad read my way through the descriptions of the different regimes and Fec100 x 6 is considered a gen2 chemo and fec100 x 3 plus a taxane does offer a better prognosis so I will have to ask the question.

I know another triple neg lady here also being treated at Carlisle was on fec100 x3 and then Tax so they do use it but we’re all different. I expect trying to design a regime to mop up micro metastases from a triple neg tumour and an er+ pr+ tumour at the same time complicates things.

I’m guessing the taxanes are more expensive. And I didn’t have any lymph nodes involved so maybe they think tax on top isn’t needed.

annieE

Great to hear you’re still well 5 and a half years after trip neg diagnosis. Did you know that there was some recent research showing that if you are still NED 8 years after diagnosis with trip neg. you are probably going to be OK?

Now that triple negatives are getting more coverage…which is great…I think it so important that good news stories are reported…I’ve read inaccurate stuff recently about trip negs always having a bd prognosis…and thats just not the case.

I did have a poor prognosis and its pretty dire now I have rceurrence not responding to treatment…but I had massive node involvement so I started off in a bad place.

Raising a glass for all us trip negs for brilliant research to find a cure…

Jane

Dear Jane

I’ll raise a glass with you for that elusive cure for you and all us other triple negs. I did see your recent post here or on the other site about the research showing that triple negs may be considered cured if there is no recurrence after eight years. I have to say that I have always expected a recurrence at some point but this research has given me some hope that I may live to be an old lady yet. Thanks again for posting this information - I’m always amazed at your knowledge about BC.

best wishes

Anne (holding her breath and saying her prayers for the next two and a half years)

Many thanks to all who responded - I am trying to speak to my oncologist so will let you all know how I get on. I also feel I need total confidence in the oncologist in order to be happy with my treatment plan.

Hi Everyone

I was diagnosed with Medullary BC in April this year and was told that it is triple negative. No one ever explained what this meant but I have done a fair bit of reading about it since then. I also had one lymph nose involved. I am having 4FEC & 4TAX follwed by 5 weeks of rads. IThe onc told me that this was the best treatment for me at my age (45). I feel that she knows best after having read all this I really hope she does.

Jackie B

Just wanted to say that I am another triple negative lady. Dx in Dec '07 with a grade 3, 3.5cm tumour. My treatment plan was 4x AC/4x Taxotere. After some initial shrinkage on AC (my tumour shrank to 2cm), I had absolutely no response at all whilst on Tax. In fact, my tumour started growing again. I asked my Onc how could this be considering that Tax is the gold standard of chemo treatments and is meant to be a lot harsher than AC. He said that the DNA in my tumour just doesn’t respond to Tax. Very, very scary if I get mets as there will be less chemo options for me. I guess the way forward would be for the DNA to be extracted from each individual’s tumour and a subsequent targeted chemo plan compiled which will definitely have a response on that particular tumour rather than just a generic chemo plan for all triple negs. After 7 months since being dx, I now realise that there is so much that the medical profession don’t know about trip neg. In fact, there is more they don’t know than they actually do know. When I asked my Onc what causes trip neg, he just stared at me blankly. There still seems to be such a long way to go before they find out all there is to know about this particular variant of BC. Jacqui

Good morning all! I managed to speak with oncologist about Taxanes for triple negatives and she told me it was due to the NICE guidelines recommending them for when there is nodal involvement only. Does anyone know different? Also she felt it was good to hold something back for recurrences. Anyway I am going ahead with E-CMF starting tomorrow and really worried.But will keep researching and questioning - perhaps I could still have taxanes at the end of E-CMF.

AnneE - so glad to hear you NED for 5 years - do you mind me asking how old you are? My age seems to be against me also being 45. However I am fit and enjoy running, dancing and playing tennis.

Jacqui - Have you had surgery yet?

It seems everyone has a different plan.

Annie

Hi Annie,

I had my surgery two months ago - mastectomy with immediate reconstruction (expander implant) just waiting to get pumped up so to speak - my surgeon will fill the implant (over time) with a saline solution until it matches my other good breast. I was treated privately, so getting Taxotere wasn’t a problem. I can’t understand why your Onc said that Taxotere is only given where there is nodal involvement - I had Taxotere and my Onc wasn’t sure at the time whether my nodes were involved, so that throws that theory out of the window. In the end, ALL my nodes were clear. I was in total shock to say the least considering my tumour was quite large - 3.5cm and grade 3, it just goes to show that you cannot always predict BC. I can only imagine that Tax isn’t freely given under the NHS because of costs - Taxotere costs £2000 per dose as opposed to AC which costs £600 per dose - quite a difference. If I was at the start of chemo treatment, I would really push for Taxotere without a doubt - it really is the best chemo treatment for triple negs and a lot of women have an excellent response. Why is your Onc saying we need to hold something back. Surely it is better to get the best treatment now to prevent a recurrence/mets rather than wait and give it to you if it does come back. Best wishes to you. Jacqui xx

Actually I’ve been deliberating this for the last few days as dose 4 is on Monday, I was also told that they can keep Tax in reserve if I do need it later and I do have no nodes involved. So a full course of FEC 100 does seem a good thing.

I checked the adjuvant online database myself and fec/tax did have slightly better numbers but only slightly and in all honesty I’m 3 down and have fared well until now, this is the good 3rd week and now I’m getting thrush and ulcers, these are signs that my body’s health is out of kilter, which you’d expect with something as strong as chemo and having read how much some people have to tolerate on tax I’m not so sure I want it if this is what the fec is doing on it’s own. Nope I think I will keep that in reserve.

Jacqui I wondered why they don’t test response in the tumour to specific drugs, but as a lot of us have already had te tumour removed I guess they can’t because the drugs operate over several days using your body as the mechanism eg the life cycle of cell replication. Also curious how you could have started chemo without knowing whether nodes were involved… did you do the chemo then surgery then?

Hi Vertangie,

Yes, I had chemo first followed by surgery. I guess chemo was offered to me because my tumour was quite large 3.5cm, grade 3, triple negative and because of my age 42. I wanted chemo first to try and shrink the tumour, so it might be possible for me to have a lumpectomy instead of a mastectomy - in the end, it wasn’t to be and I ended up having a mastectomy.

My Onc at the time suspected that I had nodal involvement although this turned out not to be the case when I eventually had surgery 6 months later and my nodes were tested. It is unfortunate that they cannot really tell for sure whether nodes are definitely involved until surgery, but in any case I would have gone ahead with chemo anyway - as a sort of insurance. Jacqui

Hi Jacqui.

That makes sense, I’d have made the same choices I think. I’m torn about the taxane issue as I have fared pretty well on FEC and have no reason to believe I needed to do chemo really, just a 12% increase in prognosis and as an isurance policy.

Just looking at the nice guidelines now, gosh they make them easy to search out… not :wink: