Early recurrence

I have metastatic TNBC - a lesion found in my liver before I had finished primary treatment. The lesion was picked up when I was being scanned for something else, so I guess I was lucky that they were able to get onto it quickly. That was late summer 22, I  truly thought my days were numbered when I looked at the clinical trial data for what I though my treatment options might be. I looked at Trodelvy and worried about the high incidence of gastric problems and its relatively low benefit to life extension. As it happened, I haven’t had to progress to Trodelvy as I was stabilised with Pembrolizumab and NAB-Paclitaxel. I am guessing that your wife’s TNBC isn’t PD-L1 positive, as she hasn’t been offered pembro. But my point is that pembro also only looked marginally effective and had a huge payload of possible consequences. But it worked for me even though I had to come off it after a few months because of the collateral damage it caused. Statistics aggregate data from people for whom the drug doesn’t work at all, along with those for whom it works well. It may be that Trodelvy is the one that works well for your wife - I hope so. An oncologist once told me that my job was to stay alive for now, and more treatments would come on stream. Both your wife and I are lucky that drugs like Trodelvy and Pembrolizumab are available for TNBC now - that wasn’t the case just a year or so before my diagnosis. 

There have been people using Trodelvy on the Beast Cancer Now site as I found some when it was a possible option for me when I had to stop pembro. I don’t know whether they are still on the drug or on the site. 

Thanks for the reply  codfish ,very true about what's new trodelvy  wasn't  available  in 2023 and patients  with RA had very little  to treat them if chemo failed

Her consultant  calls it a treatment  not a cure and as my wife is a nurse has been  advised  to take medical  retirement  so I hope it works and gives us more time 

Kevin

Hi Kev 61

I too have TNBC which was already metastatic (in the bones and also the neck and collar bone lymph nodes) at diagnosis in December 2020. It was deemed inoperable as it had spread into the muscles and chest wall. After 18 weekly treatments of Paclitaxol  and Carboplatin the follow up CT scan showed no evidence of disease and so I had a mastectomy followed by 3 weeks of daily radiation. This was followed by adjuvant Capecitabine but after 6 months a routine CT scan showed progression. My tumour wasn’t PD-L1 positive so it was suggested I move onto EC. After reading about Trodelvy which NICE had just approved for treatment on the NHS and with agreement from my oncologist, who thought it was a viable alternative, I started treatment in November 2022. After the 39th cycle in January I have stopped treatment as there has been slight progression and will be moving on to  Eribulin. My own experience of Trodelvy has been very positive and the few side effects I experienced were very manageable (nausea, constipation and dry skin) I did lose all my hair but this was less emotionally charged than the first time on Paclitaxol and Carboplatin.

There isn’t much posted about positive experiences of Trodelvy, so I just wanted to share mine. Everyone will experience side effects differently, some more and some less and maybe I have just been lucky but Trodelvy has worked very well for me over the last 2+ years. I really hope your wife has the same positive experience and I wish her well on her journey. 

Hi DeNovo

This is what I need to hear. Thanks, positive  feedback makes it slightly  more reassuring 

Anxiety  level is still  very high

Thanks Kevin