I am 52, diagnosed TNBC in April of this year. Grade 3, no staging done yet. 

Did 1 round of AC in May, got approved for Keytruda, restarted chemo in June with Taxol/Carbo/Keytruda. 12 weekly cycles of that, then 1 more AC but tumour doubled in size, so chemo was stopped altogether. 

Due to extreme hyperthyroidism, Keytruda is paused. Treating this with beta blockers which are working well so far. 

Had another CT scan last week and waiting for results. Had another biopsy Monday and waiting for those results. Reason for this biopsy is because my onco said I may have a second cancer in that tumour OR it may be morphing into another cancer subtype.

Spoke with my surgeon yesterday and he said because tumour is 5cm, we must do a mastectomy, but until biopsy results come back, everything is up in the air as they may try another chemo on me if I present with different bio markers from the biopsy. 

The waiting game is awful, as you all know and I feel so defeated with no chemo response.

My onco also said my tumour is very hard, and TNBC tumours are usually softer or squishy. Mine is like a ball and you can roll it around, which he was confused with too.  

Thanks for reading. If anyone here has had chemo resistance, I’d appreciate hearing from you. 

Lynda

So I totally understand the fear and disappointments after all the side effects we deal with we just want to be healed! Don't give up it seems like your team is on top of this and they should get more info on your tumor from this new biopsy. Guessing they did genomic and genetic testing? Are you PDL 1 positive since you had keytruda? We are very fortunate to have all the latest research and testing that wasn't available before. I have personally experienced the advances over the last 6 years I just pray that they continue to make progress to help so many wonderful lives that have been cursed with tnbc.

Best wishes and come back and update us. Sometimes this site is quiet but I still check in to see who else is out there. This can be a lonely disease at times but you are not alone!

Andrea

I am sorry to read about your journey, and you sound so positive, something I need to be aware of in myself more often. 

I am unsure about being PDL 1 positive, but I did have the genetic tests. I’m upset that I may not get the chance to keep trying Keytruda, but this thyroid thing is awful, so I don’t know what they’re going to do regarding that in the future. 

Thanks again for writing I’ll update when I have more news. 

Good luck to you in your journey, TNBC is lonely, you’re correct but so happy I found this forum!

Lynda

Interesting though this year with my metastasis i went for a second opinion with a well know oncologist who does research with TNBC. So I am now back on Keytruda  with Xeloda because I am PDL 1 positive she felt I would still benefit from it. Fingers crossed here. Hoping when they get your thyroid under control maybe it's a possibility to resume Keytruda? Although depending on what your biopsy reveals maybe a different immunotherapy. Try not to worry too much if you are confident in your team I'm sure they will come up with the best plan of attack!