Member
Posts: 30
Registered: ‎05-04-2015

Re: Triple negative secondaries/ recurrences

Hi Lainieg,
Thank you for your response. I'm pleased that it isn't cancer that you have, is there something that can be done for your limited field vision.

I hope your trial goes well, I too suffered on Fec-T.

Pippie 😊
Member
Posts: 537
Registered: ‎16-09-2014

Re: Triple negative secondaries/ recurrences

Hi ladies. I saw my onc on Thurs and I'm going to take part in a drugs trial for a PARP inhibitor called Niraparib which is apparently looking promising Has anyone on here heard of this? I might not get the drug tho as 1 in 3 who take part get chemo so that they can be compared. The good thing tho is the amount of monitoring. I'll have a ct or mri every 6 weeks. I've also been told that the chemo is easier than fec -.t. So glad as I landed in hospital after every session of that awful stuff. I've been told I won't lose my hair and I can even work. I'm really scared as are all of you. Being told it's incurable is the most terrifying thing. I'm glad to hear of people living for years tho Kittycat40. I didn't know that and I've been expecting much less. Xxx
Pippie my eye condition is an optic neuropathy in both eyes. It's limited my field of vision but my eyes have been scanned several times and I've even had mri of my brain and eye sockets and I've been assured it's not the cancer. That could change of course and going by my luck over the last few years I wouldn't be surprised. Xxx
Hope all you ladies are as well as you can be xxxx
Member
Posts: 63
Registered: ‎23-01-2015

Re: Triple negative secondaries/ recurrences

Downbutnotout thank you for your reply you have made me feel better about gem carbo and if it shrinks it or better still then it's all worth it. I felt so poorly on FEC-T . did you lose your hair with gem carbo?
My oncologist said i shouldn't totally lose my hair but it might just thin out. My hair has taken 8 months to come back after FEC T
Member
Posts: 533
Registered: ‎01-05-2012

Re: Triple negative secondaries/ recurrences

Hi worried-sick - I'm TN too and had Gem-Carbo chemo after getting my incurable diagnosis. Despite delays, reduced dose and cancelled treatments (because of low neutrophils) I got to NED (no evidence of disease) for a few months. I also found Gem-Carbo much easier than FEC-T - felt well and could keep a good level of fitness.

 

Best of luck with everything. It's such a horrid time when first told it's incurable.

X

Member
Posts: 44
Registered: ‎01-05-2012

Re: Triple negative secondaries/ recurrences

Hi Sarah any cancer spread (mets) is incurable but most are treatable. Please say yes to anything going is my advice. There are quite a few treatments out there and not just chemo. Ask your onc about surgery and radio as well. Everyone's prognosis (time left) is different depending on how you respond to treatment. There are lots of positive stories on the forum and some people live for many years. It is very hard to get your head around. I find some days are easier to cope than others. All the very best to you big hugs xx

Member
Posts: 30
Registered: ‎05-04-2015

Re: Triple negative secondaries/ recurrences

Hi Lainieg,

 

i was was wondering about your eye condition, did the find anything in your eye.  I have been diagnoised with eye mets in Dec 2015 and looking for anyone else who may also have this condition, which I am told is rare.  I did post a week ago but haven't found anyone else. 

 

I was diagnosed  with with mets in spine, ribs and lung, with a side order of athritis in neck and cataract in both eyes in Jan 2014.

 

 

Best wishes 

Pippie

Member
Posts: 44
Registered: ‎01-05-2012

Re: Triple negative secondaries/ recurrences

Hello lovely ladies I am so sorry to see you having to join us on here. It's a very scary and worrying thing to go through. I have secondaries in bones, pleura (fluid around lung) and liver. I have new liver mets so am on Eribulin chemo at the moment. I don't come on here as often as I probably should but please message me if you need support or would like to ask me anything. I am no expert but was originally diagnosed in 2007 so have picked up quite a lot of information!  I have had various treatments as was originally hormone positive but with massive thanks to Nicky on here that I had my receptor status checked and found I am now triple negative. No wonder none of the treatments were working!! I have also had SIRT (radiation beads in liver). They appear to have possibly kept the original tumours in the liver stable apart from 1 which had grown a little but of course they don't work on any new ones. I am always reading and looking into any other options. The Oncs don't always tell you what there is out there. They just seem to follow the usual procedure. I find it helps me being a bit in control of my own illness. Going to be looking into more things soon so if I find anything I will post on here. 

 

I am am using a mindfulness app Headspace which seems to help.  My motto is to try to not to let the fear and sadness etc overshadow today while I am here and living. Not always easy to do but I try to! 

 

Love and best wishes to you all xxxx

Member
Posts: 63
Registered: ‎23-01-2015

Re: Triple negative secondaries/ recurrences

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

Member
Posts: 47
Registered: ‎05-12-2013

Re: Triple negative secondaries/ recurrences

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

Member
Posts: 537
Registered: ‎16-09-2014

Re: Triple negative secondaries/ recurrences

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
Member
Posts: 524
Registered: ‎16-06-2014

Re: Triple negative secondaries/ recurrences

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

Member
Posts: 537
Registered: ‎16-09-2014

Re: Triple negative secondaries/ recurrences

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.
Member
Posts: 17
Registered: ‎20-10-2015

Re: Triple negative secondaries/ recurrences

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

Member
Posts: 524
Registered: ‎16-06-2014

Re: Triple negative secondaries/ recurrences

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

Member
Posts: 17
Registered: ‎20-10-2015

Re: Triple negative secondaries/ recurrences

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.

Member
Posts: 524
Registered: ‎16-06-2014

Re: Triple negative secondaries/ recurrences

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
Member
Posts: 1
Registered: ‎03-07-2015

Re: Triple negative secondaries/ recurrences

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. 

Member
Posts: 107
Registered: ‎26-08-2013

Re: Triple negative secondaries/ recurrences

Hi Sue,

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

Have a brilliant holiday...

C xx
Member
Posts: 524
Registered: ‎16-06-2014

Re: Triple negative secondaries/ recurrences

Lovely news Sue. Really pleased for you. Have a wonderful holiday xx
Member
Posts: 59
Registered: ‎17-09-2013

Re: Triple negative secondaries/ recurrences

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

SueWoman Very Happy