Member
Posts: 2
Registered: ‎12-05-2015

Re: Triple negative secondaries/ recurrences

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
Member
Posts: 524
Registered: ‎16-06-2014

Re: Triple negative secondaries/ recurrences

Also bumping for Jane xx

Member
Posts: 524
Registered: ‎16-06-2014

Re: Triple negative secondaries/ recurrences

Thanks Nicky, xx
Community Champion
Posts: 4,534
Registered: ‎01-05-2012

Re: Triple negative secondaries/ recurrences

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
Member
Posts: 524
Registered: ‎16-06-2014

Re: Triple negative secondaries/ recurrences

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

Member
Posts: 16
Registered: ‎10-08-2014

Re: Triple negative secondaries/ recurrences

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?

Member
Posts: 957
Registered: ‎01-05-2012

Re: Triple negative secondaries/ recurrences

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
Member
Posts: 2
Registered: ‎12-05-2015

Re: Triple negative secondaries/ recurrences

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
Member
Posts: 119
Registered: ‎29-07-2013

Re: Triple negative secondaries/ recurrences

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
Member
Posts: 161
Registered: ‎09-08-2012

Re: Triple negative secondaries/ recurrences

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
Member
Posts: 1,951
Registered: ‎21-09-2013

Re: Triple negative secondaries/ recurrences

Lol,EJ. Xxx
Member
Posts: 524
Registered: ‎16-06-2014

Re: Triple negative secondaries/ recurrences

I'll hire a plane with a banner!!
Member
Posts: 1,951
Registered: ‎21-09-2013

Re: Triple negative secondaries/ recurrences

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
Member
Posts: 524
Registered: ‎16-06-2014

Re: Triple negative secondaries/ recurrences

Glad you can still get Eribulin bumpkin xxx
Member
Posts: 524
Registered: ‎16-06-2014

Re: Triple negative secondaries/ recurrences

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

Member
Posts: 161
Registered: ‎09-08-2012

Re: Triple negative secondaries/ recurrences

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
Member
Posts: 107
Registered: ‎26-08-2013

Re: Triple negative secondaries/ recurrences

 
Member
Posts: 624
Registered: ‎10-10-2012

Re: Triple negative secondaries/ recurrences

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.
Member
Posts: 30
Registered: ‎26-06-2014

Re: Triple negative secondaries/ recurrences

Great news, really pleased for you.

X

Member
Posts: 524
Registered: ‎16-06-2014

Re: Triple negative secondaries/ recurrences

Great news. Really pleased for you xxx