Triple negative thread

Public Archive
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I’ve noticed a few more triple negative women posting on the secondaries forum and thought I would start a thread for us to share news.

I’m an oldie on these boards and know how very hard it is to get infromation about mets and triple negative…and also sadly know very very few women who survive for long with mets and triple negative. (well actually I know one who has lived longer than five years)

My history which many will know is:

Oct 2003 Primary diagnosis. 6xAC matectomy 23/25 nodes, 4x taxotere 25 rads
April 2007 Regional recurrence…but informed incurable…strange status…regional metastesis…don’t fit the neat boxes. Tumours in chest wall, neck etc
April-August 2007 6xvinorilbine +xeloda Good shrinkage of tumours
September-November 2007 maintenance xeloda
Dec 2007 Tumours progressed
Jan-May 2008 6xcarboplatin and gemzar (had to cut gemzar Day 8 due t intlerable side effects) tumours stable
May-August 2008 More than 50% progression.
September 2008 Damage to eye and voice box. Weekly taxol.
Now Tumours clincilaly feel larger. 8 taxols completed. Scan in couple of weeks.

I also now have queries over para aorta lymph ndes and a chest X ray with queries on lower parts of lungs (CT scan in August just showed rads damage. Had chest x ray prior to surgery on voice box.)

Took second opnion at Marsden in August. Disease described as persistent rather than aggressive (in scheme of things have lived longer than anticipated…and no spread…touch wood…to major organs. My trip neg is probably not basal type.) Recommended taxol and then return to vinorilbine. Offered and may take up discussion on Phase 1 trials of PARP inhibitor. Avastin not recommended on basis of trial evidence.

Emotionally in quite a hard place. Chest and neck area uncomfortable and getting worse. Speaking for longer than an hour is hard and I’m a talker! Bad lymphoedema caused by tumours.Scared that treatment options nearly run out.

So little research on trip negs and mets…so little research anyway on trip negs. Fed up of hearing about yet another aromatase inhibitor…(relatively easy to research and produce) where are ‘our’ drugs?

Visit the USA site tnbc.foundation.org but find it less useful than bcmets Notice that other drugs used in US…abraxane (a taxane) sutent, ixempra, trial of dasatnib but don’t think any of these represent any kind of breakthrough for trip negs.

Hope we can make this an active thread.

Jane

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Hi Jane
By your standards i am a newbie.
Original diagnosis March 08
0.4cm discreet area in the right breast(only showed on MRI) but significant node involvement - regional mets
treated at the RM Sutton on a contain and control basis - no cure in line for me
6x AC chemo then 29 whole breast rads
Awaiting bone scam as i have pain in hips and rightshoulder which they think is OK but they want to take a belts and braces approach
Had to fight to ensure I was followed up regularly - initially they wanted to just wait to see what symptoms i suffer but as i explained not having had surgery and no real symtoms with the BC (no lump in the breast just lymph node up under my arm and fatigue which i had put down to unexpextedly losing my Mum in Jan) it was only the fact that I was on the family history review that they found it when they did. Genetic testing negative but given the FH they think it is possibly a gene they haven’t found yet. Its strange but everything they seem to discover they always say is unusual which I thought made me special at first now I know it just means they probably can’t deal with it.
Annoyed about the lack of knowledge and awareness about triple neg cancer and fed up of everyone saying you’ll be OK cos they have tamoxifen/herceptin now!!!
Try not to think about the stats - as they say there are lies dam lies and statistics. I have decided I am my own statistic!!
Found the incurable from outset diagnosis very hard to accept- only 44- but now look at it that every one is born with an unknown expiry date, all I know now is that i probably won’t end up suffering from dementia or any other type of elderly problem!! The doctors can’t tell me when or where it may turn up next and when it does they can’t tell me how I will respond to any of the treatments they might offer. So I don’t really know anything more than I did before diagnosis. I do however have an acute appreciation of everything that life has to offer. I enjoy the good days and take it easy on the not so good days, the people i work with only know that I have had BC not the full picture (other than my director and HR) so I continue in a “normal existence” whilst I can.
thank you for starting this thread
Take care
Helen

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I am a triple neg - having been dx in 1999 - lumpectomy, rads and Tamoxefen; 2003/4 dx again mastectomy, Leterozole;
Now all change and Tumour on Aorta, mets in Plueria, bones and liver - gone 3neg.

Had Epirubicin x 3 and now Docetaxel x 6 (on 4).

I am feeling better than I have for a long time - having got rid of the cough which was my only symptom.

I agree that stats are no good to us and I wish I had not asked. We must have every intention of staying just behind the research and having the next new thing.

A few years ago we would have had no hope.

I am 51 and have not finished living yet. I have lived with all this too long to give up - I thought I had got away with it, but now know that it was never the case.

I am aiming for a holiday in Feb after I have finished Chemo - then see what happens.

best wishes Jane and Helen - onward!

gill

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Hi girls,

I was diagnosed in 2002 with primary then a year later when id finished all my treatment the bombshell happened and i was told i had a secondary in my lung. I then had part of my lung removed and chemo again taxotare. Finished that in middle of 2004 and have had no treatment since then and have been extremely healthy and fighting fit and have been to las vegas 3 times since then and visits to spain and portugal and tunisia. As you can see making the most of the rest of my life however long it may be.

I spent a year at the hospice going one day a week as a day patient and when they kicked me out because i was too well i decided to volunteer and now do a stint on the reception area. I have also joined a local cancer collaborative informing people of the signs and symptoms of various cancers to enable them to present early. This has been very rewarding as we are all community members and have designed and produced various items with information on such as bookmarks, emery boards etc.

I have already made memory books for my daughters and done all the will making and funeral arrangements and once they were out the way i could concentrate on enjoying life, whilst fundraising at the same time. The secret for me is to keep occupied and live life to the full.

I have also trained in Reiki so i could use this on myself and my friends and find this very helpful. Well thats all for now.

Take care everyone xxx

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I am pleased to hear from so positive as buzzer.

I am interested in the fact that you had local treatment to your lung. I have aorta, bone, pleura and Liver mets. I will discuss with my onc in January the poss of having local treatment to my liver - ie Laser or Radio abalation; they don’t do surgery to Liver Secondaries.

Well done for all that you are doing for others.

I hop I can continue for years to come and really cannot accept that I will not - here’s hoping.

best wishes - go well

gill

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Pleased that you are trying to get a triple neg thread going. I had always meant to post to Jaane RA as have read so many of her posts and how well informed she is.
I was diagnosed in 2001 with 4/14 nodes positive had WLI and AC clearance and FEC and rads. Very mildly oestraegen positive so tried tamoxafen and arimadex.
Cancer returned inlymph nodes in neck in 2005,2206,2007, now triple neg, had sugery twice and various chemo including taxotare,capecitamine, and AC, told had high chance of returning.
Returned again in October 2008 with pericardial effussion 1/12 litres of fluid draind off, also cancer in lining of lungs and possibly liver, unable to do proper CT scan as unable to get line in to put in dye,owing to poor state of veins due to all the chemo I had had.
Now on vinorabline in tablet form owing to veins started third cycle yesterday, unfortunately it is making me sick. onc says it doesn’t usually make people sick, and I have never been sick on all the other chemos I’ve had!
Rung up chemo nurse for more anti-sickness pills to-day, apart from 2 infections since I started on chemo I am actually feeling much better and more positive after very poor prognosis in October. Onc says my tumour markers are now nomal. I have a CT scan booked for 2 weeks time, and truly believe the chemo is working. He says I can stay on it for as long as I can take it as I have very few options left.
One of my sons is getting married in Spain in early May and I will be there also 40th wedding anniversay in July 2009. So lots to look forward to
All the best to all you others out there who are triple neg.
Thinking of you all

Marmite
Marmite

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I have triple negative and although the American site isn’t as good for chatting and kind of getting to know people as this site I found it very informative. I know there is no cure but the more medicines available to try the better, The medicines available there that we don’t get here are licensed here and are used all over Europe, it’s just that the NHS don’t deem them cost effective.

I suppose you could say that if it is only adding a couple of months onto your life then they may not feel it is cost effective, but when you add up all the drugs we are not getting on the NHS all these extra 2 months add up to quite a lot of extra time with our families. There is one woman in America on the site that has had triple negative for 18 years so there is hope!

The don’t really even know if there is a good triple negative and a bad one because there has not been enough research being done on it.

I am on a trial at the moment for triple negative patients only, the criteria is pretty stirct you have to have been recently diagnosed and only have went through one chemo after secondary diagnosis. I am lucky I had only had taxotere so I fitted the bill and agreed to the trial. I am currently on Xeloda, cycle 6 and everything is not shrinking but staying stable, when this stops working I will go onto Sutent. I know one woman on the trial that managed 18 cycles of Xeloda before it stopped working and one woman who has been on the Sutent for 8 months - so I think that’s pretty good going and it shows that we are all different.

I try not to think to hard about the fact that triple negative is amn agressive form of cancer because in some cases, like the woman who has had it for 18 years it may not be. We just all have to hope that the advances in the medicine are one step ahead of us and I for one and prepared to pay for it if the NHS won’t provide it for us.

I have 2 girls aged 9 and 6 who need their Mum and i will do anything to be here for as long as possible for them, I think that includes a positive attitide, along with a sense of realism that we know that we are all going to die in the end, the question is still the same as it’s always been: when?

My way of looking at it is I don’t know if this cancer will kill me or if I will get knocked down by a bus tomorrow so go for it everyone and when you are feeling fit and able do the things you want to do when you want to do them. After all life is for the living.

Finally, we all need to be realistic but we also have to have hope, I will never give up hope because it keeps me getting up in the morning, taking my kids to school and going to work just like I did before I was diagnosed (which I know I am fortunate to be able to do as not everybody keeps well enough to work)

Best of luck to everybody, Oh and Germany have also got a very good track record with cancers, we have to accept that we are at least 5 years behind these countries with our treatment plans.

Diane

xx

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Hi Diane

I’d be really interested to know if the 18 year survivor you mention has mets and if so for how long? Great survival story if she does.

I actually don’t think Europe is ahead of trhe UK in terms of cancer treatments…the imprved survival rates for cnacer in Europe are probably due to earlier diagnosis overall rather than superior treatment.

Yes there are different kinds of triple negative bc…as I mentioned earlier mine has been described as ‘persistent and indolent’ rather than ‘aggressive’.

I’m pretty sure the cancer will kill me rather than a bus. Hope for me is about hoping for as long as possible before the disease gets out of control. For myself I’m more or less resigned to the fact that there isn’t going to be a treatment which will work…though I have fantasies about a miracle PARP inhibitor. Xeloda, carboplatin, taxol and gemzar haven’t worked on my tumours.

Hi marmite…sorry to read of your pericardial effusions…sounds scary. I’m starting vinorilbine next week (had it last year for 6 cycles) I’m having it intravenously as I have a line. Last time I didn’t get sickness so hoping its the same this time.

Jane

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I’m pretty cancer l kill me too, but it’s a matter of when. I do still live a a little hope that the drugs are one step of me needing them, I can’t bear to think about the end yet and what it will be like for my kids. I was re diagnosed in February this year so except for a 2 weeks in hopsital I am tring to get on with my life - butI know it is hard or us all and the feelings somedays of just wanting to burst out crying are realy intense. It’s just a horrible dsease that none of us deserve.

|t’s just a rotten position for us to be in,and we are like the forgotten bunch, it’s hard but nice to speak to someone with the same type of BC - sometimes you feel that you are the only one out their.

Diane

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Hi Diane

We are indeed the dreadfully forgotten bunch…I well up with anger when I think how little there is for us. Hope xeloda keeps your tumours stable for as long as possible and then sutent.

Jane

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Hello everyone

I admit I initially only skimmed through your posts - it all seems a bit daunting - but as I am seeing my oncologist next week I feel I need to be well informed to ask the correct questions.

A bit of history - diagnosed Jan 07, mastectomy and recon Feb 07. Grade 3 invasive ductal, triple neg, 6/11 nodes. Chemo - 3 x FEC and 3 x Taxotere. 30 rads. Treatment finished early Oct 07.

So I am just over a year since treatment finished - I have to have corrective surgery next summer to replace my implant (gone hard thru rads) and to improve on the shape a bit.

I feel really well, physically and mentally, but also like I am just waiting for something else to raise it’s ugly head - which I suppose is like all of us. Being triple neg, I feel I am not doing anything constructive or know what to ask for if I do get secondaries or recurrence.

I think we need a Triple Negative category added to this site.

Anita

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Hi I am newbie to this site - only been diagnosed just under 2 weeks.
I never know if to say sorry to everyone or just the fact we have been blessed to know we can do all the things we can that we have never had the chance to do.
I am 36 with young children too. I was originally diagnosed july 07 had wli and lymph node clearance had 38/40 involved. had epirubicin taxotere and cmf plus 15 rads.
I was diagnosed with secondary november 08 which is in lymph nodes in chest , collar bone, neck and lungs. I am just atarting vinorelbine hoping for 8 cylces and some shrinkage ( probalbly the same as every other woman on here) again I am triple negative but my onc says at least we have probably more chance of the chemo working than thoses who arent. Who knows?
would love to here from more triple neg it seems there isnt many of us

Lisa

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Hi Lisa,

I notice that you say you have recently been diagnosed with secondary breast cancer, I have put for you below the link to BCC’s resource pack for those newly diagnosed with secondaries. To obtain a free copy, just follow the links/

Secondary resource pack: breastcancercare.org.uk/content.php?page_id=13429

Hope this helps,

Kind regards,
Jo, Facilitator

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Hi Everyone,

Have posted on other triple neg threads but thought I would add my voice, I do get frustrated when people find out and come out with ‘oh but there are those wonder drugs around now, you will be fine’ I dont always have the heart to tell them that actually, I haven’t got a shot at using those.

History. Dx March 2007, 2 weeks after my 40th. Mast, got confused about nodes, but think 14 removed 9 affected. 4 X FEC 4 X Taxotere. 20 Rads. All fine until October 08, lumps under arm found and then removed (axillary clearence) to find cancer had returned, told a local reccurance. Now doing 6 X Carboplatin until Feb / March 09. Feel like a bit like guinuea pig as this drug has not been widely used from what I can find out, but what can I do. Taxols are supposed to be great for us, but it didn’t get rid of the orginal cancer fully, so I guess I don’t have a lot of choice, my Onc is the expert after all!

I guess it’s ‘easier’ for the people working on the treatments to target those that will get the highest returns first, makes sense really but that doesn’t help us. Don’t get me wrong, I do not begrudge those ladies who are positive these wonderful drugs, no not at all, I just wish I felt like someone was doing something for us.

However, trying to get on with my life right now, make plans and look to the future, however long it may be. Might get real lucky and have no further reappearance of this hateful disease, but might not. Look at the numbers then I have 30 - 40% chance of making it 5 years, wish I hadn’t read that and I know the stats are always out of date, but have always been someone who needs to know, even when it probably isn’t in my best interests lol.

Take care ladies

Luv
Nikki

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Hi Nikki

I did 6 cylces of carboplatin (with gemcitibine) eralier this year. Carboplatin is a drug thought to be useful for triple negatives (there is a trial going on comparing carboplatin to taxotere) and is often used when taxanes have failed.

My tumours kept stable while I was on it…but did grow afterwrads…so only moderate success! I had about 30-40% of surviving five years and made it this October…hope you wll too. I was ‘lucky’ though to have more than a couple of years NED.

Research on triple negatives is increasing but way behind other breast cancers.

best wishes

Jane

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Hi Jane.

I have seen a few mentions of it being used in conjuction with another drug (it + the taxols seem to be getting the best responses from what I can find on the internet) for secondaries. Excuse my ignorance in that I don’t know how much of a distinction there is in cancer between local reccurance and secondary in the big scheme of things, is it not that it’s back and it’s somewhere it shouldn’t be? Maybe too simple, after all this is not a simple disease is it.

I am aiming for as many years as I can muster! On the positive, I am already coming up on 2 years post diagnosis, even if I am back in the treatment loop.

Chemo number 2 tomorrow, it’s certainly a gentler treatment that Taxotere or FEC ever was!!

Take care of yourself Jane

Nikki

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Hi Girls

I too am another triple neg!! Was dx July 07, had 6 AC chemo, (with poor response), then had mast with partial node clearance (all clear), then rads. Aug 08, found lump under arm - found to have cancer in remaining lymph nodes. No further treatment offered at that time as they wanted to keep it under their belts ‘just in case’. Well to my utter devastation, my just in case has arrived already. A couple of weeks ago I found a lump on chest wall on same side - confirmed Monday I have recurrence on chest wall. I have bone scan today and ct scan tomorrow then meet with onc next week. I will need both surgery and chemo, just dont know in what order yet.
I am absolutely gutted, angry, scared and just dont want to start this journey again so soon

Thanks for listening
S
xxxx

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hello everybody, this is my story:
January 2005, primary diagnosis:T1, G3, triple negative, quadrantectomy, 1/20 lymph nodes affected,
EC, Taxol and radiotherapy
July 2006 relapse, T2, mastectomy
Carboplatin+weekly taxol, Xeloda
February 2008: diagnosed with mets in many lymph nodes in chest, and something suspicious in the lungs.
Therapies
PI3K inhibitors (phase 1 clinical trial): stabilized tumours for 5 months
Myocet: did not work
Eribulin (phase 3 clinical trial): did not work (they told me yesterday)
going to start Avastin+taxotere today

also mentioned as possibilities: PPARP inhibitors, IGF-1 receptor inhibitors
I live in Spain so maybe chemo lines are a bit different from the ones other people are doing here, but I think it is good to hear any possible therapy.

gutted at the moment so a bit speechless…

xxx
sabrina

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Hi Sabrina

You seem to have more expereimental drugs there in Spain than we can get our hands (or rather cancer) on here in the UK.

Not heard of myocet. Just looked up eribulin which seems to be same as pegylated doxurubicin which my oncologist has mentioned…but as doxorubicin is the Adriamycin of AC which didn’t work for me, I’ve not been keen to try it. I’m also not ’
trying’ avastin cause trial results are so poor.

I will probably discuss Parp inhibitor trial with Marsden.

I’m currently in the psychological place of adjusting myself to the fact that my tretament options are basically nearly run out…so have to reframe hope in some different way.

Like you gutted…and so angry so little for triple negatives…

Jane

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Hi Nikki

You ask about the big scehme of things and the difference between local recurrence and secondaries. A local recurrence is usually deemed potentially curable while secondaries aren’t.

My recurrence is regional about which very little is written. I think of myself having regional metasteses. A single site of regional recurrence may be curable but the kind of mult site recurrence I have is not. It is expected that further spread will kill me, but the way things are going I could actually die when the multiple tumours in my chest get out of control. My kind of presenation is quite unusual but not rare and it drives me bonkers that all the information on secceondary breast cancer is so misleading. BCC literature for example implies that regional recurrences are always less serious than secondaries. This is just not the case.

Jane