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Triple negative secondaries/ recurrences

Ru
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Re: Triple negative secondaries/ recurrences

Hie Pinkabioo69 I know what you are going through we are in the same boat. I was diagnosed with TNBC in 2016 had surgery, FECT and radiotherapy, less than 2 years later in June this year it was back😩😭, lymph nodes mets. I started Carboplatin today I feel rough.
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Re: Triple negative secondaries/ recurrences

Oh the horrible phone turned Pinkaboo into Oinkaboo, sorry! Why would it even do that?!
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Re: Triple negative secondaries/ recurrences

Hi Oinkaboo, it sounds like it's not as bad as it might have been, although nobody wants any secondaries at all! Will be thinking of you as you start gemcarbo, I've got a dose on Fri too provided my bloods are ok. It's not as bad as some other chemos, at least I can say that! All the best.xx
Member

Re: Triple negative secondaries/ recurrences

Hi I just been told got secondery in nodes after triple negative no other spreas hat all scans nodes very small one under arm other side of original masectomy and 2 bottom of neck same side as masectomy bue to start gem carbo Friday 

Member

Re: Triple negative secondaries/ recurrences

Hi Sherie, welcome to the club nobody wants to join! I only started gemcarbo two weeks ago but I am sure it's already helped as the pain has subsided a lot. I'm not expecting miracles but I'll take that!
Member

Re: Triple negative secondaries/ recurrences

Dear All

 

I'm in a similar position, diagnosed with primary tnbc in Sept 2015, I now have secondaries in liver, lungs, bones and lymph system. Currently on gem/carbon. No idea if it's working yet, too soon to tell.

Good luck all

 

Sherie 

Member

Re: Triple negative secondaries/ recurrences

Hi Moomin,
I don't have any experience of that drug, just wanted to say hi and wish you well. I'm in a somewhat similar situation, tnbc diagnosed may 2017, had fec-t and mastectomy, but in January they found secondaries in mediastinal lymph nodes, now also in lungs and other nodes. I had 5 cycles of capecitabine but it failed, so now I've started on carboplatin and gemcitabine.
I haven't really found anyone on here on these particular drugs, I think the same might happen to you as there's not so many of us!

You may already know, there's a very active and supportive Facebook group for triple negative, where you might find the info you need. If you're interested I can send you the link.
Member

Re: Triple negative secondaries/ recurrences

Hi Ladies,

Diagnosed March 2017 with TNBC.

Had FEC-T Chemo but on 4th cycle had local spread so Carbo was added in.

Had Mastectomy Sept 2017.

15 rads November 2017.

Risk Reducing mastectomy Feb 2018.

Routine oncology appointment resulted in a CT, MRI's to my brain, neck, spine, liver.

April 2018 diagnosed stage 4 with mets to liver, spine and lungs.

Done 3 cycles of Capecitabine.

CT scan last week shows lungs and spine stabiliased but a new lesion has appeared in my liver.

Tomorrow i start Halaven/Eribulen.

Looking for positive reports on this chemo drug, especially for the liver.

Thank you x   

Community Champion

Re: Triple negative secondaries/ recurrences

Hi hellyhead....what was the outcome? Have heard good things about pembrollyzumab, but not tn myself.very best wishes for you.

 

 

moijan🙏Xx

Community Champion

Re: Triple negative secondaries/ recurrences

Hi Jilly, Just wanted to mention that each time a chemo has failed me....it’s been after a break, the bc changes it’s dna and then becomes resistant to the drug, I was doing fine on Cape until I took two weeks off to address my cellulitis.....honestly I’d try not to take breaks......canceracts like a virus and becomes resistant.

 

’’’best wishes for you tho, love and hugs.  

 

I know others have taken breaks and will disagree with me...but it has happened three times to me so far...,so something to think about....I wanted a weeks break this time on Paclitaxel but onc was reluctant...said he’d rather lower the dose if need be,

 

ps your private messaging hasn’t been activated yet....speak to the moderators xx

Moijanx

Member

Re: Triple negative secondaries/ recurrences

hi everyone

 

I thought I'd come and join you all...I'm back on Eribulin next week after a 14 month chemo 'holiday'.

I have triple neg secondary BC which has chosen para-aortic lymph nodes this time round.

 

Yes, our treatments are quite different to the oe pos ladies.

My cancer has changed back and forth over the years from oe neg to pos and then back to neg, so I've pretty much tried most drugs, and now I'm hoping Erib will work again.

 

Its nice to have support here,

kindest wishes

x

 

 

Member

Re: Triple negative secondaries/ recurrences

I’ve dropped you a PM Lainy xxx
Member

Re: Triple negative secondaries/ recurrences

I am so sorry to hear this, I have just finished treatment for triple negative breast cancer and I am so scared!

I feel like I am alone now and just have to get on with it while others get to take Tomoxifen or Herceptine to cover them

How did you find out that you had cancer cells in your chest bone?

xx

Member

Re: Triple negative secondaries/ recurrences

Hello ladies, never thought I’d be here again.. I had TNBC grade 3 in 2013...thought I’d cracked it. Just been told that cancer cells have been found to my chest bone. The nurse told me that this was treatable and I would have to take bone strengthening tablets. Have my appointment today to find out all the details.
I’ve had a read through of the messages, not all mind as there is ‘loads’ but it’s been real helpful as to what to expect and given me ideas as to what I need to ask. Amazing how you can read at 2am onwards. Nerves are definitely getting the better of me x will compare my treatment notes once I know...be grateful for any advice 💕xx Teresa xx
Member

Re: Triple negative secondaries/ recurrences

Hello ladies, never thought I’d be here again.. I had TNBC grade 3 in 2013...thought I’d cracked it. Just been told that cancer cells have been found to my chest bone. The nurse told me that this was treatable and I would have to take bone strengthening tablets. Have my appointment today to find out all the details.
I’ve had a read through of the messages, not all mind as there is ‘loads’ but it’s been real helpful as to what to expect and given me ideas as to what I need to ask. Amazing how you can read at 2am onwards. Nerves are definitely getting the better of me x will compare my treatment notes once I know...be grateful for any advice 💕xx
Member

Re: Triple negative secondaries/ recurrences

Thanks Annie, it's nice to get a reply, do you have triple negative bc too and if so how long have you had secondaries. Hope you don't mind me asking it's just that there doesn't seem to be that much activity on this board for triple neg ladies. I picked up my cape this morning so back on it tonight, just hope it works again. What treatment are you on for lung mets? Thanks for the hug - much appreciated. 

Community Champion

Re: Triple negative secondaries/ recurrences

Hi Jilly, sending a big hug. You must be feeling a bit low, but if the medics can hold it at bay once then I'm sure there are more tricks in their goody bags to help you. I've got lung mets and my Onco said just that. Science is moving so rapidly that us secondary girls have got good fighting chances now. Thinking of you. X 🍀💐🍷

Member

Re: Triple negative secondaries/ recurrences

Hello, this is my first posting on the sbc forum so hope I'm doing it right. I'm feeling a big low today after my trip to see onc. I was diagnosed with metastatic tnbc in Feb 2016, with extensive spinal mets.  I've been on capecitabane since Dec 2016 and have seen my tumour markers steadily falling. However just had a 7 week chemo break to go on holiday and cea marker has gone back up from 9 to 37. Got to have a ct scan to see what's going on. Feeling rather deflated.

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Re: Triple negative secondaries/ recurrences

Hi hellyhead,

Just wanted to see how you are?

Xx
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Re: Triple negative secondaries/ recurrences

Well, have been browsing this thread and realised that it has only recently been resurrected from last year and there have only been 4 posts this year  so not very busySmiley Sad but here goes anyway...

 

Movetothecountry, hello, I wonder what you decided to do? 

I am meeting a trial researcher in Glasgow on Thurs to discuss entry to a trial as my first line of treatment for TN recurrence in a chest lymph node and lung. Exactly the same as you, it is delaying start of standard chemo which would be carboplatin and I could have been on it already.The trlal is for Pembrolizumab, which hasn't been approved for breast cancer yet but is used for lung cancer and melanoma. My tumour has been compressing my main vein to the heart, and I had a stent put in on Weds last week to protect the vein to give me time for any drug treatment to start working. I had 5 shots of radiotherapy to the tumour in June which helped for a few weeks but then the vein obstruction symptoms recurred hence the stent insertion. I'm pretty alarmed that I had this tumour diagnosed in June (although it's been there a lot longer!) and am still waiting to start any chemo/drug treatment - and worried by the length of time a trial drug might take to give me any tumour shrinkage - if it does at all! But of course there is no guarantee that the carboplatin or anything else will work either and the oncologist's feeling is that if I run through several chemos first then I might well be too ill or my disease too advanced for the trial, so they are recommending I give the trial a shot first. 

 

It's a really tricky one tho isn't it. The questions I want the answers to are whether the trial drug will give me longer survival and better quality of life than normal chemo.... but no one can answer that I guess and statistics are dangerous things! I hadn't heard of your trial drug Olaparib. I haven't as far as know been tested for the BRCA mutation. 

 

Be interesting to hear from anyone else in trials for TNBC or facing these choices.

All the best, Helen