Triple negative secondaries/ recurrences

[Pinkaboo69]

Hi been on gem carbo for mets in nodes triple negative had scan in Jan no mets detected and April scan no change but saying stable in comparison with Jan ct scan does this mean no change ???

[funnyface]

Ramade, I'm sorry I just saw this post. Wow, That must have baffled you. I don't have an answer, but maybe the nurses would. Can you call your Dr.and ask? I know you have had a good many chemists, but I don't remember which ones. Even though your Dr is telling you there is only one more maybe they can come up with a combo or try a drug that they don't usually use. Don't forget about asking to revisit a drug if it's been awhile. Also ask about trials. Only you know how you feel. Wishing you the best! Hugs!! FF

[ramade]

Hello all, i have been treated for met bc for several years, it was hormone receptive. They've done a biopsy and said i am no longer hormone receptiveHR and i am not HER either and there is only chemo left, i've had most. i just want to know if this means i am triple negative, i forgot to ask at appointment because i was trying to take it all in.

thanks so much

Ramade xx

[Pinkaboo69]

Hi all had 6 cycles of gemcarbo had scan after 4th cycle was clear no spread but onc as gave me 2 more cycles just had another ct scan node seconderys x

[marleypop]

Hi ladies, I had TNBC in my left breast in 2013, I’m now stage 4 with spread to my chest bones. Today I’ve been told that I now have TNBC to my right breast. Has anyone else on here had TNBC while dealing with cancer elsewhere in their body. Thank you 😊 xx

[Pinkaboo69]

Ct scan was clear but carnt understand why been offered 2 more cycles off cemo 

[funnyface]

Millie30, This is such a cruel disease! There is no rhyme or reason to it! Your partner was very young! I'm sorry this was the journey she had! Thankfully you got to speak to her. Take care of you and come back to chat if you feel the need. Hugs! FF

[Kate21]

Millie30, I’m very sorry to read this and send my condolences to you, your family and friends. I’m glad to read that you got some more time to talk together and hopefully this will be of comfort to you as I’m sure it was to her. Thank you for letting us know and take care, Kate x

[ann-m]

So sorry to hear your news Millie30 & so good to hear you could talk some more & you were there, it must have been such a comfort to her. 

Sending you, family & friends every best wishes to see you through this.

ann xxx

[Millie30]

My wife passed away on the 17th just before midnight, i was glad she came around so i could talk with her more but its never enough time. I spent 2 weeks living in the hospital and was there when she passed. I know people are in worse situations but this is such a stupid disease and she was only 45:(

[trudy2010]

Sorry to read this, Millie30.  I can see that you posted a couple of days ago. How are things now ? You sound very supportive and just being there helps at this difficult time.

[Millie30]

Sorry to be nearer of bad news, im almost certain im millie29s partner but never knew she wrote here. Millie is the dog next door she loves and the dates and procedures match what shes been through. I cant confirm as shes lying next to me in a hospice barely able to say two words.

She had a seizure last tues suddenly and has not recovered, many milder seizures since, it will only be a matter of days and ive gone through help already. She stopped eating and then drinking then closed her eyes and i was pleading for her to wake up, miraculously she has come round today very thirsty (ad they stopped the Iv drip) and i have her water she even ate some pie. Its heart breaking as when she stopped eating I begged her to eat and kept ordering food.

Whole process has been a mixed bag of great and bad treatment, im glad she has opened her eyes even if it is only for today briefly. I'm staying sleeping at her side and actually dreamt last night of walking her out of hospital but woke up still in this hell. Ive had a Chaplin in which gives you a sense of my separation right now.

[Pinkaboo69]

Hi all just got a clear ct scan but been offered 2more cycles of gemcarbo is this a insurance thing and I have no big problems on this cemo 

[Pinkaboo69]

Just got results from ct all ok and responded to treatment one more cycle to go

[Millie29]

Thanks for understanding Tatyana. Sounds like you’ve walked in my shoes before me. Mother says she can cope but is constantly on phone (or at least feels like) asking me to do something or other. If I felt well enough I would do it, but I’m not up to it at the mo. No other avenues for help. Just hoping to get some treatment started soon, and hopefully feel better ! X

[tatyana]

Millie, it's no wonder the anxiety is getting to you, what with your family worries on top of your illness. Is there anyone else who can help your mum? I spent many months trying to get some sort of care organized for my parents, who insisted they didn't need help, but it was one crisis after another. When they eventually moved into a care home it was such a relief, because now I know there's always someone to take care of them in an emergency if I can't do it myself because of this wretched disease. I do hope you can get some help.

Do tell your medical team exactly where you are with the cough. They have quite a few options for helping with coughs and breathlessness, so don't try to grin and bear it! Hang on in there. It sounds like you've got a lovely partner who is very concerned about you, so I'm sending him a hug too!

[Millie29]

Thanks Tatyana for your quick reply. I was feeling ok about it up until a week or so ago, but because I can’t sleep for coughing and was experiencing really bad headaches, I think my anxiety is hyped up. My father’s got dementia and my mother relies on me to help but I’m just not feeling up to it. Hopefully I’ll get some treatment soon which will help me feel better. My partner is also really anxious. The cough is getting worse and he’s wondering what if I can’t get any breath.

[tatyana]

Millie, so sorry to hear this. I have lymph nodes in the middle of the chest and a couple of bits in the lungs, so maybe a bit similar to you. My secondaries were diagnosed back in January but I'm still here! I've been on two different types of chemo at different times, you'll probably have a similar pathway, it all depends on the type of tumour etc, but generally they'll try one thing, see how you get on, and if it doesn't work for you they'll switch to something else.
It varies hugely from one person to the next, but you will find people on here who've been living with secondaries for years... and with a good quality of life.
It is a very scary time and my heart goes out to you. But trust me, it does get better once you have a treatment plan and know where you are. Somehow the brain and the emotions find a way of adapting, and life goes on.
Sending love and hugs. And please let us know how it goes.xx

[Millie29]

Hi all, first time posting. Recently diagnosed with a recurrence which is being tested. Original diagnosis was Dec 16. Started chemo Jan 17 but after 4 cycles the tumour has grown. Had mastectomy and lymph node removal in April 17. Restarted chemo May 17 to September 16. Radiotherapy in October 17. Recurrence is in the lymph nodes around my windpipe and a couple of spots in lung on same side. Have had a terrible cough for months, difficultly on times in catching breath. Had endoscopy and tissue extraction on Wednesday. Waiting to hear treatment plan. In the meantime feeling terrible.

[Pinkaboo69]

Fingers crossed for you my love it's a scary time ain't it but treatment so much better than years ago took part in a target triel think it's just a data base if I need them type of thing I think x

[tatyana]

It sounds good, Pinkaboo. I'm so pleased for you!

[Pinkaboo69]

I did speak to the breast care nurses on ere and she said same they would change cemo if it's not working and have ne in don't see my doc till 20th

[Pinkaboo69]

Hi Tatyana my breast care nurse did say if you don't hear nothing from her take it as good news and my onc as got me down to finish my cemo surely she would have had me in by now if there was anything feel so well and at least my liver ok hey I'm having a chilled out weekend cemo to mix normally sat but my oncolegist couldn't get me in coz it's double dose xx

[tatyana]

Hi Pinkaboo, it sounds like you are doing well on gemcarbo, fingers crossed it is working for you! I'm on my sixth cycle,they only said six, I had a scan last week and get the results on 7 Nov, then we'll see what happens. This time, my haemoglobin was very low but they gave me the gemcarbo anyway, and a blood transfusion a few days later, which did the trick. But my neuts were still too low to have the gem on day 8, so that's been delayed by a week. It's been one delay after another and I'm down to 70% of the original dose. But I am living my life in between times. Going to see my mum in the care home today, it's her 96th birthday, not that she knows, sadly! This evening we're going to some old friends for dinner, lovely people rearranged it at a moment's notice because of the change to my chemo day. Really looking forward to some nice food and a good gossip! Hope you are having a good weekend.xxx

[Pinkaboo69]

Forgot to say had to miss gem coz my plattlets low this is the second time I've had to miss it but never the gemcarbo x

[Pinkaboo69]

Hi tatyana had to have picc line in for rest of my cemo 2 more cycles to go had ct scan two weeks ago the lady that did the scan said I had a extremely healthy liver no news yet but fingers x it's doing its job coz my oncologist as ordered rest of my cemo to go ahead how you doing wish I could stay on this cemo forever as we have nothing else xx

[Pinkaboo69]

Hi unable to have gem on Saturday due to immune being low rang secratery and told her I didn't want to miss is so now got to go and see my onc tomoz for review is this normal

[Pinkaboo69]

Silly to ask but how do you no if gemcarbo is working had a feel of my nodes and carnt feel anything feel well just worried there is nothing else or can we stay on some form of cemo 

[tatyana]

Hi Pinkaboo, I'm on my fourth cycle of gemcarbo so I'm not far ahead of you. Only slight hair thinning, which is a great relief! I've had several delays due to low blood counts, but now they've reduced my dose a bit so hopefully this will get the balance right! Recent scan result was stable, which is good. Hope your blood holds up well, but if you do get delays, don't worry,it seems it's very common with this combo and they just work around it.

[withasmile]

glad the bloods are good Pinkaboo,

I'vejust finished 6 cyclesof Eribulin and awaiting scan results

xx

[Pinkaboo69]

Just finished my second cycle of gemcarbo and fingers crossed only a tiny bit of hair loss putting my bloods through it this cemo but this last cycle as been spot on with bloods as anyone been on this combo long term

[withasmile]

hi Pinkaboo,

Secondaries started two years ago. At the start it was also in my liver but the initial chemo cleared it, and now just ('just'! hahaha) in nodes.

xx

[Pinkaboo69]

How long you had it in nodes hun at least we got it no where else fingers x

[withasmile]

hi Ladies,

TN too, in para-aortic nodes.

I'm on Eribulin, next scan mid September.

We keep plodding away don't we!

x

[Pinkaboo69]

almost didn't have my cemo last week ammune system a little loo but small prise to pay if it sorts these nodes out and hope it keeps them from going on the move xx how are you doing xx

[Pinkaboo69]

Cemo going ok anyone out there finished there cemo for secondary to nodes triple negative worried bat after treatment is there anything for us or can you stay on cemo

[Pinkaboo69]

Hi having my second cemo tomoz gem only how long does this take x felt a little tired after 1st lot but not to bad is there anyone out there that have the same and how long you had them just nodes all other scans clear xx

[Pinkaboo69]

Hi Ru had my cemo all ok a little tired but feel great hope it zaps these nodes and stops them in there tracks how you doing xx

[Pinkaboo69]

Well had my first gemcarbo feel ok little tired but that could be being there most of the day

[Pinkaboo69]

Got told I won't lose my hair now been told I could help x

[Ru]

I hope so too. All the best for Friday Pinkaboo69 drink plenty before. We can do this x

[Pinkaboo69]

Hi I have had carbo b4 and I was ok just hope I can do the combo just hope it does the job dam you nodes x

[Ru]

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.

[tatyana]

Oh the horrible phone turned Pinkaboo into Oinkaboo, sorry! Why would it even do that?!

[tatyana]

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

[Pinkaboo69]

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 

[tatyana]

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!

[sh duffin]

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 

[tatyana]

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.