Hi
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.
X
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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
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Thank you, I appreciate you reaching out.
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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.
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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.
Hi, it’s a rubbish club to join. I don’t have experience of cape. Let us know how you get on once all the tests are done x
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My first time trying to reply . I’m MTNBC ,so understand x
Hi ! My recurrence is in my liver and spleen . I’ve done three months of Abraxane and immunotherapy.
I had a scan before Christmas and it showed in my oncologists remarks an ‘excellent response’
Tumours have shrunk and lymph nodes have gone back to normal size !
It’s ok ! Just fatigue and constipation afre each dose - Laxido is my friend
Hope you get on well too
X
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.