Triple negative secondaries/ recurrences

[worried-sick]

I have just been diagnosed on 4th January 2016 with liver mets well I think that's what it's called. I only finished all my treatment for triple neg BC in July 2015. Had left mastectomy, chemo and rads. I found this site a great help first time round.  I've been too scared to look on here since my diagnosis last week. I am devastated that it has come back and so soon but then we are all feeling the same Why me !!!

This week I have been given my treatment plan and I start gem carbo chemo next Friday advice and support desperately needed please x

[Sarahmummy]

Hello, i hope its okay to join this thread.  I was told on 6th jan last week that I have secondary triple negative breast cancer. feel serile ......not sure its sunk in yet.  I was first diagnosed in december 13 and joined a group on here called december angels which is still a great group and all the other ladies are doing fabulous - except me, I did a full years treatment - fec-t chemo, mastectomy and radio. finished in dec 14 then it came back in the skin in feb 15. did gem/carbo chemo, a massive op to remove 15 by 13 tumour in skin and got rid of other breast and armpit nodes to - a 10 hour op and finished 5 weeks of radio on 29th dec. now its back - bit on skin about scar across shoulder, in right armpit, chest node and two spots on my right lung. gosh - what does this mean as they said I am incurable? they said I can have treatment "if I want to" and offered carboplatin for 6 to 8 cycles.  I am keen to do treatment again as I want to stay alive I have small children.  any thoughts does this mean I have months or a year or longer?  how are you all coping and how long have you had secondary breast cancer .  thankyou if you have read all this!!!! xxxxxx

[LainieG]

Thanks for getting back to me Ellie. I didn't know the receptors can change. I'll definitely follow that up. I still haven't had my onc appointment. Had to postpone til next week because I haven't had my liver scan yet xx

[EJ81]

Hi Lainie,

Welcome,  although I'm sorry you're having to join us. Hopefully your team will get back to you with a treatment plan soon as things always feel a bit better once there is a plan in place.

I'm sorry its taken such a long time to get back to you. This forum is a really useful, friendly place where you can ask anything. It is great sometimes to talk to other people who 'get it'.

Only advice I can offer right now is to ask if it is safe to biopsy any Mets as your receptor status can change sometimes. Something I wouldn't have known if it wasn't for this forum.

Sending you love and hugs,

Ellie xxx

[LainieG]

Hi ladies. I'm new to this forum although I was on one of the other bc forums before this awful disease reared it's ugly head again. I was diagnosed with faulty BRCA1 gene in Sept 13 and had a double mastectomy in July 14. After the op they found a small tnbc tumour in the tissues and I started chemo in Oct 14. Thought it was all clear until a chest xray showed a suspicious area and ct scan confirmed secondary in my lung and possibly liver too. I was given the news on Christmas Eve so still very new. I'm waiting for an ultrasound to confirm the liver mets and back to see the onc on 7th Jan. The onc said it's very small so early stage (The xray was ordered by my opthalmologist looking for a cause for an eye condition I developed recently so not looking for cancer). Told my 3 sons today and have to face my parents with it tomorrow. Feeling exhausted and emotionally drained. Looking for some advice on next steps etc.

[Anneliese]

Thank you. My wait has turned into months from first visit to gp. Hopefully just one more week to wait.

[EJ81]

Hi Anneliese,

Welcome to the forum. You will find loads of support here, whether you have questions or just want a rant. It can seem like an awfully long wait to start treatment sometimes but I think a few weeks here and there doesn't make much of a difference. I remember feeling like that early on and then reasoning that I would feel more panicked if they'd rushed me in the next day. Saying that it does feel easier to cope with one treatment is underway so I hope you do get started soon.

Lots of love,

Ellie xxx

[Anneliese]

Just wanted to say hello. Feeling rather anxious with how long it is taking for me to start treatment for the mets. Medical people are rather relaxed about it all but as every week goes by the worse I feel.

[EJ81]

Hi Kaz, welcome to the forum. I've had same chemo so far. Just had first cycle of gem carbo. First weekna bit iffy but feeling OK now. Sorry you're feeling so tired. I'm really sorry you havevtonjoin us but you will find loads of people who are good listeners and give good advice. Xxx

[Kaz15]

Hi. I have just registered to this forum. I was diagnosed with weakly positive BC in August last year. Had lumpectomy and four lymph nodes removed. Results came back good...clear margins around lump and no spread to lymph nodes. Had 23 sessions of radiotherapy. Discovered another lump in December which turned out to be cancer again. Had ct scan which confirmed it had spread to my lungs. Devastated. This time I was diagnosed as tnbc. I too have had ec and taxol and avastin with no success and am currently on gem carboplatin - second cycle. Fatigue is awful. Looking into alternative treatments now too. Sorry can't be more helpful. 

[Orse1970]

Hi Sue,

Really really plsd for you... As another tnbc lady you have given me hope!!

Have a brilliant holiday...

C xx

[EJ81]

Lovely news Sue. Really pleased for you. Have a wonderful holiday xx

[bazcas]

Just got results of CT scan to Thorax, Abdomen and Pelvis re secondaries to Spine and liver plus lymph nodes.  Results are stable appearances with decrease in some secondaries!!!! Onc is very pleased that the treatment Capecitabine is working wahoo. I have been on the treatment since Sept 2014 and just started my 13th session. Off to Mallorca in 2 weeks feeling a very happy bunny :lol:

I wish everyone the same good fortune. fingersCrossed.gif  fingersCrossed.gif

Sue

[Tillymint18]

Thanks Nicky, I am still waiting for my 'urgent' heart rescan, and still having lots of chest pain. Having a bone scan next week. As you say cardiology and oncology don't seem to join up, where was the specialist clinic you got referred to? Tilly XX

[EJ81]

Also bumping for Jane xx

[EJ81]

Thanks Nicky, xx

[nicky08]

Hi Ellie (andTillymint)
I may be the lady you are thinking of who had heart problems after chemo? I have had serious issues with my heart but it was more the way it was 'mis firing' ie palpitations than fluid around it, which as far as I know I've never had. Sorry if I can't help other than to say I found that oncology and cardiology are specialist areas in their own right and neither of my (local) experts knew enough about the other ones area of expertise to really help me when I needed it. I ended up with a referral to one of the few cardio-oncology units in the country and they do know what they are talking about!
Nicky x

[EJ81]

Hi Kavir and Tillymint,

Being TN can be a bit lonely can't it. This thread goes a bit quiet sometimes but its good to know its here. Kavir EC didn't work for me either but so far tacol and avastin are ok although I'm rather nervously on a break right now.

Tillymint I haven't had the same problems myself but I think there is another lady on here who had heart issues with one of her chemos so it might be worth starting a new thread on it that she might see. I'll message again if I work out who it was!

Ellie xxx

[kavir]

Hello ladies, its great to find this thread finally. I have felt very alone being TN but having read through this thread have felt very positive. I was diagnosed with TNBC last august with both primary and secondaries in liver and bones. Have been on taxol and avastin then EC both did not work and am now on carboplatin. hoping next scans will show some improvement - could really do with some good news. Is there anyone out there with a similar situation?

[Bevlaar]

Hi tillymint. Yes my primary was TNBC in 2005 no nodes. Had lumpectomy chemo and rads. Then new primary 2009 in same spot but weakly positive so not recurrence of first. Put on tamoxifen after having mastectomy..
Then in aug 2013 dx with secondaries in right lung. Started on chemo july 05. Stopped responding after 3 months. Have since been put on 3 others. Last 2 didnt work either so hoping this one Vinorelbine may work. My onc says i prob have the type of cancer that just doesn't respond to any chemo.
I think i only have 1 option left after this.
But in march this year was also dx with brain mets...4.
So had WBR which ended on 15 april but I'm still suffering the awful fatigue from the radiotherapy. ...i still feel as lousy now as i did 4 weeks ago. Hoping it'll start to pass soon .
Hope your treatment goes well.
Love bev xxxx

[Tillymint18]

Hi ladies, I've only just registered to this forum and pleased to see a TNBC thread as so far haven't come across a single other TN person. Been battling solidly for 18 months now; surgery, chemo, surgery, radio the dx with brain mets and had more surgery and now on Chemo. Ended up in local hospital over the weekend with chest pain and just been told I have fluid round the heart, not sure what this means hoping to get to see my onc team this week. Anyone else had anything similar?

[Jam]

Hi ladies in case you haven't seen this we have till midday to vote for badge. Hope you don't mind me butting in. Janet xhttps://www.surveymonkey.com/s/DFNSQCL

[Bumpkin]

Hello Ladies!
Sorry about your port EJ. Will they put another in so you can get going again? Best pain relief I ever had was when mine was put in before I started Eribulin. I prefer the port to the Hickman line there before, though it does give me quite a few twinges.
Don't talk to me about occupational health. I am now into my fifth month of trying to sort out ill health retirement pension with LGPS. I got so stressed with them on a call the other day that I read the riot act with more choice than clean language. Never ever done that before. One thing I now do is say what I mean, usually more tact.
spiking again on Eribulin! 38 again all evening. Per ct scan tomorrow. Oxycodone is the only thing that works on the pain with these flu like symptoms.
A friend, to whom I have explained TN a number of times in the last three years, asked me yet again what it means at the weekend. I asked her to do me a favour and research it because I am obviously poor at explaining it. That's as tactful as I can get.
Sleep well all. Updates from others too please. X

[2catlady]

Lol,EJ. Xxx

[EJ81]

I'll hire a plane with a banner!!

[2catlady]

Hi,TN ladies, I know what you mean ! Let's go the whole hog and wear sandwich boards when we go out lol.
I'm also so grateful that Eribulin people came to a deal with NHS so it's available for more of us.
Hugs, Helen xxxx

[EJ81]

Glad you can still get Eribulin bumpkin xxx

[EJ81]

Arghhh! Wrote a whole reply just now and the tablet ate it! 

Hi everyone,

On a chemo break right now after my port got infected and had to come out - only two months after it went in which is gutting. Bit nervous about stopping the chemo which had been working well but it is nice to have some relief from the side effects which were really getting me down. 

So tired of having to explain TN and SBC. Had a pretty horrible phone call with occupational health last week where I had to spell things out pretty crudely because they just weren't getting it. Perhaps we should get some cards made!!

Hope everyone is doing well,

Ellie xxx

[Bumpkin]

Calling all TNs. Please update us on how you are. No posts since we lost Lulu, which is understandable. I hope we can regroup. I have a high temp and pain I am controlling with Oxycodone right now. thursday I have a pet ct scan to see if Eribulin is blasting my skin and nodal mets. Outward signs of skin mets have been promising but i do get lots of axillary, chest and bone pain. I hope this is due to murder of the beastie. Eribulin is still available, despite CDF withdrawal. I understand from my onc that the manufacturers negotiated. In any case, it showed promising results for TN. I have heard TN is supposed to respond well to chemo, but this is the first of five drugs which has worked for me. I have taken ages to edit out my aged cat"s contribution to this post! Please post your updates. Don't you get weary of explaining what TN means? Never mind what secondary means. I sometimes wish I carried little leaflets or something. Bumpkin x

[Lynnq]

Great news bazcas........long may it continue

I also attend s LWSBC each month and find it helpful and informative. Also met some lovely ladies there.

[abilucy]

Great news, really pleased for you.

X

[EJ81]

Great news. Really pleased for you xxx

[Barton]

That's brilliant news, Sue!  As Desi says, long may it continue.  Hugs, Barton.x

[Desi-2]

Thanks for posting your news bazcaz really needed to hear this right now long may it continue

[bazcas]

Saw Onc end of Jan for CT scan results, everything was stable and I saw him again on friday for MRI brain scan results. The tumour I had zapped last march was barely visible and the one in November could not be seen. He was very pleased with the "good disease control" and no further lesions YEAH :lol: So I continue taking Capecitabine and hope it continues to do its stuff for a long time 😮

Good luck to eveyone who will be getting results this week , luv n hugs Sue fingersCrossed.gif fingersCrossed.gif

xxx

Ps I went to my 1st LWSBC meet up in Sheffiield on thursday and t was very enlightening and I met some

lovely  inspiring ladies. x

[abilucy]

Great news, really pleased for you.

Xx

[Barton]

Hello Sue - what wonderful news! Who doesn't love stability?! Long may it continue. Hugs, Barton.x

[bertie1]

That's great news so pleased for you xx

[bazcas]

Hi lovely ladies, I have just been for results of a  CT scan and after 6 lots of Capecitabine the cancer is stable....yeah Hope you are all doing ok and Lulu am thinking about you for 27th, good luck!!!!!!!!

Love and hugs Sue xxx

[abilucy]

Hi Lulu,

Good luck for the 27th, I'll be thinking of you.

Might sound a bit daft, but no idea what type of rads I'm having, guess just the basic? Appointments in half an hour.

Seeing my onc on Thursday so will ask him what he's heard about this gene discovery.

X

[EJ81]

Good luck lulu. I'll be thinking of you on the 27th xxx

[Bevlaar]

Good luck lulu! Hope it all goes smoothly for you lovely lady xxxx

[bazcas]

Hi Lulu good luck for the 27th ...have everything crossed for you.

Many hugs Sue xxx

[2catlady]

Lulu,lovely to hear from you. Good luck for 27th.
Huge hugs,Helen xxx

[Lulu34]

Well I'm now not having the stereotactic radio surgery and having neurosurgery instead.... It's basically in the same bit of my brain but nearer to the surface and currently is smaller than it was. I'm booked in for my op on the 27th of jan... Hope it will go as smoothly as last time 🙂

Thanks Abi (and also Belinda for posting the link) it's always fab to hear of potential good news in TNBC Stories.... But I'm sorry to hear you have been affected by the dreaded brain mets too..... Are you having WBRT or some other type of rads?

Take care

Love Lulu xxxx

[EJ81]

Thanks Abi and Belinda,

Always good to hear some positive news. Let's hope trials start soon xxx

[Desi-2]

I read this to Abi let's hope it's not too long before it's available to us. Good luck with your rads, let us know how it goes.
Tracy xxx

[2catlady]

Thank you Belinda,xxxx

[belinda]

Hi Abi and everyone, I think I was just reading the article, this one?
http://www.dailymail.co.uk/health/article-2903446/Hope-breast-cancer-patients-scientists-discover-tr...
Sorry to hear your news Abi but glad you are receiving such good care and Good Luck for your treatment. X