About to start Trodelvy, any information please

Hi Everyone,

I’m about to start Trodelvy next Thursday. Talk about a double edged sword. It’s great that it is triple negative specific and is supposed to be 2x more effective than other chemos for this but it means two weeks IV treatment one week off. So tethered to the hospital indefinitely. The side effects sound horrendous and to counteract them there are shed loads of meds to take. In addition I am the first patient to have it at my hospital and I am not at all confident they have know how to deal with any problems. They haven’t filled me with any confidence since I started this back last May. They are an uncaring, casual bunch, often offhand or downright rude. Apparently as a secondary breast cancer patient I don’t get a breast care nurse, there is no nutritionist, no on oncological physiotherapist, no psychological help, in fact nothing in the way of support at all.

So if anybody has already had experience of Trodelvy I’d love any info you have. Has anyone had an allergic reaction? How long does each session take? How bad are the side effects? That kind of thing. I’d be so grateful I feel I’m really in the dark here.

LL x



I feel really quite excited for you and a little envious. I belong to three Stage 4 Facebook groups and most people seem to be finding Trodelvy a relatively easy ride, though there have been one or two whose experience has been a bit like EC treatments. It might be worth going in and looking at threads on Trodelvy. The most relevant will be in Stage 4 Triple Negative Breast Cancer (UK and Ireland only), but there are also people in Stage Four Deserves More and in 2nds Together . They are friendly and supportive groups and you’d get an instant and honest response.

The problem is, they are obliged to inform us of the main side effects (I’ve always had different ones) and that is always alarming (I’m already thinking ahead - vomiting???) but they are controlled, as you say, with other medications. After taking 18 cape tablet a day, I can’t imagine there would be too much medication!

Could you get your care transferred to another hospital if they are such a lousy bunch? You do have that right. Again, who’s is what I’m learning from the FB groups. Am I right that you live in an isolated spot? Surely in that case you could look in different directions? I don’t know how that would affect the Trodelvy (whether it’s negotiated on an individual patient basis or whether it’s negotiated with the hospital). It must feel pretty scary, not having confidence in your team. I’m treated at a Regional Centre of Excellence but there is no special provision for bc nurses specialising in secondary care either. I think it’s a huge oversight. I use the basic breast care team and they are very supportive but a bit ignorant about how Stage 4 is different, which is what we need, especially emotionally. I do still use the oncology rehabilitation physio service and we have a Maggie’s Centre (where in fact the Secondary Support group run by Breast Cancer Now is held). My oncologist, who treated me occasionally during primary treatment, has never seen my kind of metastases and my kind of tumour. I guess I could have shopped around for a different oncologist who has but I know this one will do his very best for me and I know he consults a much wider MDT. It must be hard not feeling they care or show an interest in you and your concerns.

Good luck with the Trodelvy. I do hope it lives up to its reputation and it halts this vile disease. I’ll be following your experience as closely as I can as I have a vested interest. Fingers crossed it’s not as bad as you’re anticipating.

Jan xx


Hi Lancashire Lass,

Firstly just wanted to wish you all the best for tomorrow. I am hoping to start in two weeks time so will be really interested to hear how you get on. I think from what I have read in the other forums that most people seem to be tolerating it ok. Although the first cycle is particularly tough for some it looks like it often settles down after that. I think the initial infusion takes 3 hours but it can be reduced to 2 hours after this first one and maybe reduced further to one hour later. Good Luck. I really hope it helps. 


I’m afraid I cannot help with experience but I am in a similar situation and actually started 9n Trodelvy this Tuesday. Whilst I understand all your worries (although I have had a wonderful team around me) i realise this is a bit like a zip wire when you step into the unknown. But think of all the advantages we have now compared to just a few years ago. Chin up, think positive and be thankful you have been chosen. 

Hi Jaybro. Its Vita. I just joined looking for info on this as my mom has stage 4 TNBC, now in liver so we have to pick this week either TRODELVY OR ERIBULIN TRIAL…can you share your face book groups? I’m seriously looking for some help and thanks, Vita

Hi Jaybro. Its Vita. I just joined looking for info on this as my mom has stage 4 TNBC, now in liver so we have to pick this week either TRODELVY OR ERIBULIN TRIAL…can you share your face book groups? I’m seriously looking for some help and thanks, Vita

Hi LL, how is Trodelvy working for you, we have to choose this week between this and Eribulin