Hi - Im Stage 4 secondary - looking for buddies

I was first diagnosed in 2017 at 38 years old with right sided TNBC (not in the family and Genetic testing was negative), I had lumpectomy, chemotherapy (FEC-T), total axillary clearance then radiotherapy. I went in for fat transfer reconstruction surgery at the beginning of this year and at the follow up I showed the Dr a swelling in my armpit on the opposite side - he said it was just fat. In May I was chasing up my mammogram that I had been promised yearly until I am 50. No one got back to me but in the meantime I felt a hard lump in the nipple on the same side. I was seen within the 2 week pathway and the mammogram was clear - luckily I had an ultrasound too which also showed the nipple was clear but that I had inflamed lymph nodes on the left side which were biopsied. I had a CT scan which showed many swollen lymphs in my chest and neck and another biopsy was finally taken from the nipple. Came back as stage 4 secondary TNBC. After waiting 3 weeks it came back that the hoped for pembrolizumab was not suitable for my cancer so I am now on weekly Atezolizumab and Abraxane (Nab-Paclitaxel)
I’m halfway through my third cycle with scans planned at the end of my fourth cycle.

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So sorry to hear your story and hope you find some buddies on this site - if not, there is a TNBC facebook group which is great and they have a 2nd group for stage 4. Lots of love to you, xx

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Dear Lainy I am a stage 4 thriver. I was diagnosed last September stage 4 de-nova er+pr Positive her 2 negative at 49.
I am so sorry sister your cancer has come back and now MBC
I started on Tamoxifin and then Lextrozle with Riboclicib, unfortunately my cancer progressed to my liver and ribs. I had it in my right hip and 8 lymph nodes and T2, L1,L2. So i went on a clinical trial and unfortunately it progressed again and another spot in my T10 and my breast tumour has grown that it split my skin. Tomorrow i start 5 days of palliative radiotherapy to hopefully reduce the tumour and the pain.It has already been cancelled twice as going on a trial, it is so strict. I have now been referred to another oncologist that is a 4 hour round trip which isn’t ideal. I am from the UK, but i live in Australia. I need to get on Piqray which would help my mutation of Pik3ca unfortunately that drug hasnt been passed here so i am now trying to get on another trial to assess it as the other trial i got the arm for standard Capecitabine so like the Riboclicib it wouldn’t work with the mutation. I am not happy that there is a treatment but i am having to jump through hoops to get what i greatly need. The fact it spread yet again.
Anyway i am determined to fight as much as possible, i have two amazing teenagers and they need me.
It is amazing now,how many new treatments are out there for all different MBC it is just getting that right combination. How are you going with side effects?. I look at it as a chronic illness and i will be on treatment forever. My new oncologist is very positive and i needed that as my other oncologist i think after my 2nd progression was at a standstill and i appreciated she referred me on. Just the travel when you are not feeling well is going to be hard. Keep strong Lainy you are in my thoughts and prayers, keep in touch 🩷

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Hi Laney, I am in the same boat as you, two years ago next month I was diagnosed with TNBC in my right side also in a few lymph nodes… hard chemo, mastectomy , most lymph nodes removed, radio then biopsies and scans showing all gone…six month check up found lymph nodes swollen on both sides…here we go again, biopsies showed it was this time hormone receptor positive, started ribbociclib and letrozole three month scan showed some lymph nodes had reduced but new nodes now on my collar bone and pelvis full of triple negative again, had four cycles of xeloda now, waiting for scan mid September…just a bit fed up with it all now and feeling groggy. Hopefully your drug can now help clear it up or slow it down loads. Keep up the positive attitude, I thinks that the most important thing, I have tried to carry on as normal, working reduced hours throughout as if I don’t I will go mad. I am 55 with a teenager and early twenties daughter who need me too so I must keep going. I am English but live in france. Sending you positive thoughts, it’s nice to know we are not alone

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Hi
Please feel free to private message. I too understand how you are feeling at this moment. Sending you a huge hug and positive thoughts :hugs:
J🌸

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Hi Lainy,

I have TNBC that has spread to lymph nodes and muscle across my chest. My primary diagnosis was in 2019 at age 49 and I had mastectomy with full lymph node clearance, chemotherapy and radiotherapy. My secondary diagnosis was last summer after I noticed swelling under my collar bone and I was initially put back on chemo (EC first, then paclitaxel + carboplatin) and pembrolizumab. This worked well and hugely shrunk all tumours and I’m now on 3 weekly pembrolizumab only, which I am finding easy compared to the chemo. I believe the Atezolizumab is very similar to pembroluzimab (works the same way) - I’m not sure why one is more suitable for one person than the other - did they tell you why that one?

I hope you don’t have too many side effects and fingers all crossed for your next scan :crossed_fingers:t2::crossed_fingers:t2::crossed_fingers:t2:

Lisa x

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Hi @Lainy

I am a fellow stage 4 TNBCer, in my case with mets in my liver. The issue was found towards the end of the chemo I had for my primary tumour, thanks to a CT scan done for something else. It’s not in any of my lymph nodes as far as I know, mine travelled via my blood.

I have just started my second 12 week block of Pembrolizumab plus NAB-Paclitaxel. Results looking promising from the liver MRI I had recently.

Atezolizumab and Pembrolizumab both work to stop PD-1 binding with PD-L1, but come at it from opposite sides of the bind. I think it’s common to pass the entrance exam for one but not the other. The impact in terms of removing the checkpoint on your immune system seeing the cancer should be the same.

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Thank you for your reply, I have just requested to join the Facebook group. I’m interested to hear about what other treatments people are having and how long they work for. My nurse has told me not to worry the cupboards are full and we’ve only just opened the door but I already feel like this first treatment isn’t working xx

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Thank you Lisa, it’s good to hear from people who are further along in the treatment and it’s good to hear that you are working, I’m not feeling well enough at the moment with the weekly treatment but I’m hoping this will work and the treatment will reduce xx

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One thing to be aware of with immunotherapy is that the results are not always immediately obvious. Scans, particularly the first one, can show ‘pseudo growth’ due to immune cells infiltrating the tumour. An MRI shows more detail than a CT, so may enable your oncologist to have a better idea. Of course these immunotherapy drugs don’t work for everyone who is eligible, but when they work, they usually work well.

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Sorry to hear you’re having to experience this. Here if you need a sounding board. I have been through TNBC, not recurred that I am aware, although I have only just had my first annual mammogram and awaiting the results. Fingers crossed.

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Babiecat

I so agree with you regarding working- if I didn’t work I would go mad! Also we are blessed we have that choice as I know many do not!
Hope scan showed stable! My scan is due next week, I’m not TN but just wanted to chip in re work. I too have a 21 year old, and my strength comes from being ‘normal’ around her, she just says ‘you will get better mama’ and I as long as I can continue as I am - that’s good enough for me.

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Hi, also looking for friends. I’m on the same treatment as you, just finished my first 3 months and am awaiting results to see if treatment is working, although I’m not hopeful (physically breast has become worse). I was dx straight to secondary in June with mets on lymphnodes, lungs, chest wall, brain and suspected nodules around liver. I’m 33 and have a 1 1/2 year old.

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Hia

Hia

I too was diagnosed stage 4 TNBC from the off ( de novo I think they call us!) . I was diagnosed end of October and I’m on Atezo and Nab Paclitaxel . Just finished my first cycle.

How have you found the treatment ? , I’ve found it not too bad so far , fingers crossed. Feel like I’m on an emotional rollercoaster , some days better than others , which I know is totally normal. I have 2 girls , one aged 17 and the other age 10 ( tomorrow!) Hope you are coping ok ? I really hope you get some good news with scan results despite not being hopeful

Elly
X

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Hi Elly
Happy birthday to your youngest! Looks like our treatment plans are the same as I’m on the same meds and just begun my second cycle today.

Treatment has been ok, few gastric issues but generally I think I’ve been very lucky!

I actually found out I’m what they call static which means there’s been no change - no progression of the cancer but also no reduction but they said that’s good news.

Where are you from? Where are your mets?

Bex :cupcake:

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Hi Bex

That’s fantastic news about your scan and that you are stable , you must be relieved ! Also , the immunotherapy part takes time to kick in and do its stuff!

I’m so sorry you find yourself in this shit situation , with such a little one. Not sure if you are aware but there is a Facebook group for TNBC (UK) which is really good , I’ve recently joined , you may want to take a look as it’s another way to connect.

Glad you’ve found treatment ok too , it’s certainly a bonus when you see some of the side effects some people get , bless them . Let’s hope that continues for both of us.

My situation briefly , I didn’t have typical “symptoms” , I had pain and some swelling for a while , thought it was hormonal , Dr not concerned , referred for reassurance. Found cysts and large lump and swollen lymph nodes in armpit. Was basically told they were certain it was cancer , put in for urgent CT etc at same time biopsy sent off. CT showed “abnormality in both lungs” - stage 4 , I’ve been too terrified to ask more about it .

Sounds like you’ve been through hell of a time with diagnosis, bless you. I hope you have lots of support around you, always around to chat and please feel free to direct message me . I’m in Cardiff , how about you?
X

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Hi lainey, hope you are doing ok, my scan was good, cancer still there but smaller, xeloda is working so far…keep going

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