Tnbc - partial response

Hi MrsBB

I'm Daisy53 one of the Community Champions on this forum.  I'm sorry to hear that you were diagnosed with triple negative breast cancer..  I was diagnosed with triple negative over five years ago.  After having 8 cycles of chemo there was still some cancer left in my lymph nodes.  My oncologist put me on 8 cycles of Capecitabine once i had a ct and bone scan to make sure there wasn't any spread (there wasn't).  I got through the treatment without any side effects luckily.  I had a small local recurrence two years later which I had removed successfully.  Since then I've been cancer free.

Wishing you the best of luck with whatever comes next for you.

Best wishes

Daisy53

Thank you for responding! Did you also need chemo for the recurrence? 
My oncologist wants me to continue with immunotherapy instead of going on Cape and not sure how I feel about that....

No I didn't though I did have chemo for a different breast cancer that I had.

Another way of looking at it is that you were responding to the immunotherapy / chemo, and the lumpectomy and radiotherapy have cleared out what was left in your breast. Any further treatment is therefore precautionary. Given you had a good response I think it likely they will want to continue with the immunotherapy rather than switch you to Cape. It sounds to me like you have had a really good outcome. 

For some perspective, I have metastatic TNBC which had spread to my liver. I had pembro with chemo. I had previously had a lumpectomy, chemo and radiotherapy for my primary cancer before it was realised it was also in my liver. I had to stop treatment due to over reaction to the pembro, but it had reduced my liver tumours significantly by then. I had an ablation procedure to remove the residue. I have been in remission ever since, over 2 years now. 

That's amazing news you've been in remission over 2 years! So glad to hear. 
You think it sounds like I had a good response? I feel like I've failed  I haven't had any reassurance from anyone on my team, just very statistic happy! 

They won’t have a lot of data on how people get on in the real world. Pembro has only been in use for TNBC since 2023 (it’s been in use for other PD L1 cancers for a lot longer). I was one of the first 2 patients in my hospital to go in it for TNBC, so my consultant was learning on the job. She has gradually got more positive about me has time has gone on….  Wishing you all the best. 

I have also replied to your post on cape. All those people who were talking about cape 5 years ago had no better treatment option. Some people with TNBC today don’t either, as only a proportion of TNBC has the protein that enables Pembro to work. 

You definitely haven’t failed. No one can say what the future will hold for any of us but is does sound like you are in a better place than you are fearing. 

Hi Coddfish. What was your adverse effect to the Pembro? Why I ask is I finished Pembro treatment April 2025. In October 2025 I then got drug induced pneumonitis in the lung on my treated side. High dose steroids ending just before Christmas. Feel much better now. Waiting on ct scan results. My lung function has improved.. 

Hi Darlek 

I had had 4 cycles with Pembro every 3 weeks and NAB-Paclitaxel 3 weeks on 1 week off (for metastatic TNBC). I then moved to Pembro every 6 weeks but with NAB-Paclitaxel still 3 weeks on 1 week off. I had my pre-treatment blood test for the 4th infusion of NAB-Paclitaxel in that block. I had been feeling thirsty and a bit odd that day. I was called back a few hours later with my creatinine through the roof. Immediately hospitalised. Further tests concluded an acute kidney injury and also loss of thyroid function. I spent 3 days in hospital, 3 more days as a day case on steroid drips. 9 months in total on a slow wean from the original high dose prednisone. During the wean I started to get breathless and was found to also have pneumonitis. 

Kidneys fully recovered. I need to take a daily tablet of levothyroxine. Lungs improved but I am not as fit as I was. 

if you click on my name there’s a link to my blog. The immunotherapy event was in September 23. 

Thanks for your reply. Immunotherapy is a wonder drug but sometimes has crazy side effects. I was shocked to be told I had pneumonitis as I’d finished Pembro April 2025 with no problems. Glad your kidneys recovered. I know my lungs have improved and I’m waiting on results of a CT scan. Like you I don’t feel fully recovered. Take care