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Triple neg metastatic breast cancer

12 REPLIES 12
misty1515
Member

Re: Triple neg metastatic breast cancer

Hello Mclaire83,

My scan back in Jan was reasonable positive - the scan showed stability/improvement so I am having another 3 cycles of AC chemo. I've had two since, one more to go and then my next scan on 23 March.

What about you?   Hw you getting on?

Misty1515

Mclaire83
Member

Re: Triple neg metastatic breast cancer

Hello. 

my scan was positive, I think. Not a total response. My oncologist said I’d had a partial response to the chemo and showed no progression.. positive I guess. Anything less that it’s all gone is a negative for me at the moment. 

im having a bad week. I had treatment on Friday and I’m struggling to pick myself back up. Feel very down and exhausted and sick. This is number 5, my oncologist wants me to have 8 rounds before we review, then who knows what! It’s so unknown isn’t it. In all honestly I’m starting to wonder if all the pain and heartache is actually worth it 💔🙈

how are you holding up? I hope you’re doing well x 

misty1515
Member

Re: Triple neg metastatic breast cancer

Hello Mclaire83,

I'm in to organising things too.  I'm currently selling clothes on vinted, not because i expect to die any time soon (!) but I just have this drive to sort things out!

I have a scan on 12 Jan.  Here in France we get the results straightaway.  After the TEP scan I have a 45 min wait and then the radiologue comes in and delivers the news.  Last time he shut the door behind him and I instantly knew the result was not going to be good.

Let us know how you get on with your scan (if you want that is).  One good thing about this site is the number of different treatments that I can see people have which reassures me a bit.  I am currently on AC chemo.

Have a good day.

Misty1515

Mclaire83
Member

Re: Triple neg metastatic breast cancer

Hello! 

Thanks for your reply. Sorry to hear your in the same horrible club as me. It’s awful, heartbreaking and impossible to get your head around isn’t it. the TN feels like an added kick doesn’t it. Lots of people have stories of 5..9..12 years on but they are not TN and can be controlled with hormones etc so I am finding it hard to find people with the same situation as me with positive outcomes. For me currently the best I am hoping for is a relatively pain free few years at least. 

I have a 4 year old daughter who I live for, she keeps me going but I do find it exhausting. 

I currently have covid which is scary but I’m hopefully over the worst. I had my first scan after 4 cycles of Abraxane (once every 3 weeks) and I’m waiting on the results which is making me very anxious. 

I tend to feel quite positive and manage to get on with my day pretty well, how about you? I am a self employed interior designer but I’ve stopped working as don’t think I can manage the stress, it’s made me very sad but my time is precious and I want to spend it doing things with my family. 

I must admit I do do most things with a little voice in my head preparing me for my death, organising my belongings and thinking it could be the last time I do something.. pretty depressing but maybe just a way of processing it all. 

Are you still working? What is your current treatment plan? I hope you’re doing ok x 

 

misty1515
Member

Re: Triple neg metastatic breast cancer

Hello

I am TNBC with nodules in my lungs and brain.  Vile isn't it?

How are you getting on?  I have just done an introductory post on this forum about my situation.

If you want to chat I am around.

Misty1515

Jax5
Member

Re: Triple neg metastatic breast cancer

I didnt get on with wigs either 🙄

I am starting capecitabine tomorrow so hoping it helps. I shouldn't lose my hair with this drug, so I'll take that as a little win. 

I am glad your treatment is going as well as it can be and yes we just have to do what we can for as long as we can for our children. 

Do you have family nearby? X

Mclaire83
Member

Re: Triple neg metastatic breast cancer

Hello

im so sorry to hear your recently diagnosed. I am finding this distant lymph node diagnosis really hard to come to terms with, and being triple neg is causing me a lot of anxiety. Like you I just wish someone would tell me how
long or what will happen. But we are all different and apparently we all respond differently to chemo.

im now on my second round of Abraxane and so far doing ok, It’s manageable. The worst thing so far has been loosing all my hair. I have a 4 year old and I’m 37, I brought a cheap wig online (bloody covid) and it fell off in a shop so I’ve scrapped that and im now just wearing a hat! 

the initial shock has easier and I’m learning a new normal, it’s hard and I feel so unlucky and full of self doubt but I have to keep going for my daughter.

when do you start treatment? I hope your ok x 

Jax5
Member

Re: Triple neg metastatic breast cancer

Hi, I am triple negative with metastatic in distant lymph node's. 

I am waiting for scan results to see if it is anywhere else but hoping its not. I'm like you, I have no clue what to expect and having 5 girls is making it much harder to contemplate having to leave them much sooner than I would like. I'm 36 years old! I would just love it if they could put a number on it, 6 months, a year, 20 years! But I guess its just a waiting game.

Mclaire83 I would love to know how you are getting on and feel free to message me on here.

I'm new so not sure how it works just yet.

Much love and positive thoughts to you all x

Dolly01
Member

Re: Triple neg metastatic breast cancer

Hi, I really hope you now have more positive answers. I also have one breast care nurse who is amazing and lovely but just looks and sounds sympathetic all the time, I felt worse the other day after speaking on the phone to her 🤷🏻‍♀️ I’m sure she would be upset if she knew. 
Im very new to this too 😢 but I’d do what the others said ring the numbers on here for advice. 

Take care ❤️Xxxx

Shi
Community Champion
Community Champion

Re: Triple neg metastatic breast cancer

Do join the oct2020 Chemo thread too 👭 they are amazing bunch and all helping each other step by step through chemo 👭❤️ Do ring the number on here, you will be able to speak freely and you will be listened to and understood and receive care and compassion ❤️ Do keep off dr google it will send you stratospheric. Day by day and step by step, be kind to yourself and do what’s right for you always ❤️ 💕💕Shi xx

Mclaire83
Member

Re: Triple neg metastatic breast cancer

Thank you so much for replying to me. It’s all so overwhelming, I just don’t know where to turn to be honest. 

Thank you for the book recommendations 💕

Shi
Community Champion
Community Champion

Re: Triple neg metastatic breast cancer

Mclaire83 ❤️ Please ring the number on here and speak to a nurse or the someone like me option ❤️ Surviving triple negative breast cancer by Patricia prijatel was a good book that you might want to look at age a 2 x tnbc survivors, it’s not a book for everyone but It helped me. Also Robin Roberts and Joan lunden American tv ladies are both tnbc survivors and for me they were inspirational too ❤️ 💕💕Shi xx

Mclaire83
Member

Triple neg metastatic breast cancer

Hello

im just wondering if anyone is in the same boat and can shed some light/experience.. info? 

I have just been diagnosed with triple neg breast cancer with metastatic lymph node (N3) involvement, they said it’s metastatic as has spread to distant lymph nodes but not in my organs or bones. I don’t really understand what this means for me and no one seems to be able to give me an answer. I am trying to read positive stories but I feel doom and gloom and a feeling of no hope. The nurses just give me a look of pity and say they don’t know which is driving me crazy. 

I started chemo 2 days ago and they have said it’s just wait and see what happens. I can’t find any other stories of it spreading to distant lymph nodes but not organs.. it doesn’t make sense. 

my head is in such a spin. I have a 4 year old and life was going to well until this diagnosis. I just don’t know what to do, how to feel or when to look for the right advice. 

thanks for any replies x