Thank you so much for that. It is reassuring to hear from someone going through the same. Start cycle 3 on Monday then a CT scan so fingers crossed it works.
I have signed the petition and registered onto NICE site.
I work in the Policy, Evidence and Influencing Team at Breast Cancer Now. The 29th April was the deadline for responding to the NICE consultation on the extremely disappointing provisional rejection of Trodelvy. The next step is that there will be a second committee meeting which is due to take place on 7 June. This will look at all the responses to the consultation, as well as consider any new evidence from the company and any confidential discount that has been made to the price of the drug. Following this, a final decision will be made on its use on the NHS - this is likely to be towards mid-end June.
We have secured confirmation from the drug company that they will now continue to supply Trodelvy through their access scheme until the decision in June.
More information on our campaign on this can be found here https://breastcancernow.org/get-involved/campaign-us/time-trodelvy
We will keep everyone updated with any news on this over the next month.
I hope capecitabine does work for you. By the end of cycle three, I showed a good response to it and I’m close to the end of cycle 18 now. It’s still containing the TNBC but it’s coming to the end of its run, just not yet as my oncologist doesn’t want me to move on before I really have to and my tumour appears to be stable.
As regards Trodelvy, April 29th was the deadline for online responses to their report. These responses, by clinicians and patients, are now being reviewed by NICE. There is also public pressure on all relevant stakeholders to come to a workable agreement before NICE’s provisional report (with its 3-year review (!!) is finalised.
As far as I’m aware, patients can still be put on Trodelvy and their treatment plans will be honoured by NICE. But you are like me - not quite ready for it, which makes us among the potential victims of what seems to me a gamble NICE is taking in order to get Gilead to drop its price. My oncologist believes the public pressure must work but he’s an eternal optimist.
If you can comment on my post from yesterday - Triple Negatives need your help - it will bring it to the fore again and we may continue to get more signatures for Breast Cancer Now’s public campaign. It’s only 2700 away from 100,000 signatures now. I’m sure you’ve signed it but I’ll add the link here too. It beggars belief that our futures are expendable in the eyes of NICE (actually a 3-person committee including no one who works with patients in oncology - Committee A), when far more expensive treatments have been endorsed for use in the NHS:
So, for us both, it’s still wait and see. I don’t know when their final report will be published but perhaps someone else will know. Wishing you all the best with Cape. If you’re feeling awful, the body does adjust and the side effects ease.
I have TNBC with liver metastases. I am 53years old and until my diagnosis in January 2021 i was fit and healthy with no health problems. I had 6 months of chemotherapy last year followed by a mastectomy with lymph nodes clearance. Histology post op showed that I did not have a complete response to treatment. I had 15 sessions of radiotherapy which I completed in January 2022. In March I was diagnosed with incurable liver mets. I am about to start my 3rd cycle of capecitabine but if this hasn't worked I have run out of treatment options. My only hope is trodelvy and the last I heard it was going to be reviewed again on 29th April for use on the NHS. I have not found anything on the NICE website to update the news on this. Have you anymore information?