I’m in a FB group for S4 tnbc but thought I’d say hi here too.
Primary was may 23, lumpectomy, node clearance, chemo and rads.
I had pain under my arm which resulted in ct scan and ultrasound, confirmed tnbc at interclavical. Possible recurrence in axila also.
Pdl1 neg so no immunotherapy
No gene issues so no parp inhibitors
In England so even though my her2 is now 1 rather than 0 I don’t think I can get enhirtu
Asked about cyber knife, didn’t get anything more than ahead shake (I’m in northwest and don’t think anywhere around here does it)
It’s been three months since that 1st scan and I really still feel in the dark about treatment and potential progression.
I had my 1st chemo for s4 today, three week cycle, no break, weekly paclitaxol with carboplaitin every week 1
Would love to hear from people in the same position.
Hi! I’m not in the same position but I just wanted to send love and hugs your way. It’s so unfair that you’ve had this diagnosis and can imagine it’s a very difficult one to get your head around.
A good friend of mine is S4 and she’s really changed my outlook on MTBC. As she points out, none of us know what tomorrow will bring! Even with TN there are still many avenues your journey can take, and new treatments are being developed all the time. Hang in there, one day at a time. I don’t think you should put pressure on yourself to be positive etc but please do know that there is reason to believe you can still have years ahead of you xx
I am not quite in the same position. mTNBC spread to my liver, but mine is PD-L1 positive so immunotherapy was possible. I had 5 rounds of Pembrolizumab with NAB-Paclitaxel and ended up in hospital via A&E with a serious immunotherapy related adverse event. Acute kidney damage, loss of thyroid, lung damage. 9 months of high dose steroids to stabilise all of that. I can’t have any more pembro. I can’t have any more Paclitaxel (I also had Paclitaxel for my primary and have been left with neuropathy). Fortunately the pembro had had a good effect on the tumours. I the. Had a liver ablation and have been stable since. Next stop is Trodelvy if and when needed.
Hi milake and codfish,
I have just joined this group having just recently been diagnosed with recurrence and Stage IV TNBC to liver and pleura. Workup and DNA testing still pending. Capecitabine was suggested in the meantime.
Thank you for your support.
So glad to hear your good news! I have been doing alternative therapies and have seen small decreases in liver, pleural effusion, ascites, and nodes. I am thrilled there has been no progression! I will restart the study drug in 2-3 weeks …I had a slight skin rash and temporarily went off it. I also have been feeling great so am thankful for that as well.
Many thanks to all of you who have offered support. Much gratitude during this scary, anxiety provoking time.
Hi. I too have TNMBC S4 with no mutation that can be leveraged for more effective treatment. My primary bc was hormone receptor positive -2017. Treated with lumpectomy, axillary lymph node disssection, chemo and radiation. So when mets appeared on a scan in 2024, and would be very difficult to biopsy (small and in precarious locations), the oncologist moved forward assuming that the new tumors were hormone receptor positive. Started a CDK 4/6 in Nov 2024. Idk if it was in fact triple negative all along or if the extreme stress and grief of my husband passing in Jan 2025 fostered the mutation. Regardless, here I am MTNBC in breast, sternum, vertebrae, lymph nodes (many), liver. It was in my right lung but was eradicated (for now) via chemotherapy (Gemcitabine + Carboplatin). New lesions were showing in lymph nodes so, I moved to sacituzimab, “Saci” or trodelvy. Oncologist said it has worked well for many, but was not spectacular for me. I just started capecitabene (pills). I am preparing for the worst but am hopeful for some control or even tumor reduction. I picked capecitabene and was given the option between the cape or infusions of Eribulin. I also received recently some radiation/radiotherapy (considered pallative) to my sternum, breast and rib. It did shrink the lesions in those areas. I hope this helps answer your question. I’ll note that my drug options may be different than other TN breast cancer warriors as I need to avoid any drugs that I have had before or their close relatives. They are not recommended for me since my cancer has already endured them -albeit many years ago. So, for example, a drug called Doxil is not recommended at this time for me since I was treated with a similar or related drug called Taxol in 2017. I hope this very long post shares some promise and hope - I have been told that there are many many options. I work every day to keep a positive mind set and to focus on living. I still work quasi-full time, but fully remote . Other than fatigue and zero hair, I lead a fairly normal life. Best of luck to you and kindest regards.
Welcome naturegirl. I originally joined this group in ‘22/23. It has been the best forum overall.
Now that I’ve graduated to the MTNBC group, I am impressed by the strength and solidarity of other warriors. It gives me hope and belief that we can carry on, that there are other lines of treatment available.
I still work half-time, fully remote too. I go to daily ballet classes, go out w friends and family. I appreciate each day. I have become a more tolerant, caring person. I have also cut some toxic relationships. It’s sort of like moving house and deciding how to declutter.
I wish you all the best and continued good health.
You might investigate the PAVEMENT trial, it is a way of getting immunotherapy if you are pdL1 negative. The main centre is the Royal Marsden, but its also running at regional hospitals too. This wouod be your second line treatment for when your current chemo no longer works. I will be on this when my current drug Paclitaxel no longer works. I will be treated at the Beatson in Glasgow.