Trodelvy Cycles

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Hi,

I hope everybody is feeling 'ok'. I am stage 4 breast cancer (but have been for 2 years so I am not complaining!). I am currently on Trodelvy and, as it is quite a new treatment, the data and statistics are quite limited.

I am lucky in that I have been on it since May 2022 and it is still keeping the cancer stable; I am also reasonably lucky as the side effects are manageable. However when I was at the clinic recently the nurse let me know another patient was struggling with the side effects so she has gone to a 4 week cycle (normal cycle is treatment weeks 1 and 2 and recovery week 3). Whilst side effects are manageable I am sure, like a lot of people, I am just starting to feel a little bit like myself just before the cycle starts again!

When I asked about what impact the 4 week cycle may have my consultant didn't have any evidence of this  change as the drug is still so new which is totally fair enough of course so I just wanted to ask here if anybody is on Trodelvy (and I REALLY hope it is working for you) and whether they had had any similar discussions with their consultant. As my chemo is always part of life until it stops working the idea of having a longer recovery time is obviously very tempting indeed and certainly would contribute to the 'quality of life'  strategy.

Many thanks in advance of any experience you may have had or if I can help with any queries you may have about Trodelvy please do ask me.

Have a good day everybody

Sarah xx

  • Hi Sarah sorry no-one has replied, this should get you bumped up to the top in the hope that you get relevant answers.  Love from Ann

  • You can use the search function to find discussions on it ->

    https://community.macmillan.org.uk/search?q=Trodelvy&category=

    Looks like : 's wife is on it.  Perhaps he might see this tag and jump in, although it was a few months back he posted.

  • Yes my wife was on Trodelvy. The side effects were mild for her but they did reduce to dosage to 80% due to low blood count. The drug worked for a couple of months to the surprise of the oncologist as the cancer didn't respond to other chemo but unfortunately my wife's cancer was very aggressive and she passed away peacefully in October. 

  • Oh, I am so sorry to read this  I hope you are coping ok.

  • Hello Bill, thank you for taking the time to reply to me. I am so very sorry for your wife (and you of course). At least she passed away peacefully which is all some of us can hope for. I hope you are doing ok. Sarah 

  • Hi Ann - thank you for taking the time to reply to me - it was a bit of a long shot question so I am (once again) so very grateful for other peoples advice and help on this site. Sarah x

  • Hi Sarah. I have just started Trodelvy so I may not be able to help answer any questions but did want to share my experience. I unfortunately have been really suffering this week (my week off) with severe stomach cramps and severe diarrhoea. The way that I am feeling right now, I don’t know if I could handle another cycle never mind a delayed cycle. 

  • Hi Bev, I am so sorry to hear you are struggling with Trodelvy and hope your symptoms ease soon. I did go to a 4 week cycle (which I'm still on) and the extra week really helped the balance for me. Saying that I am on week 3 this week and am also suffering more than usual this cycle. Sending you lots of good wishes you start to turn the corner very soon. x

  • Thank you.  What way are you being affected this week? Have you noticed any trends from week 1 through to week 3? I seem to have had a full week of cramps since day 8 infusion.

    Bev x

  • Hi Bev, I am on cycle 15 at the moment and I have to admit, although my first cycle was tough, I have been pretty lucky with the level of my side effects. I took a break of 2 months before my current cycle so I think (but I don't know) that my increase in fatigue and diarrhoea this cycle maybe because of that. My main trend is I'm 'ok' between days 1 and 8 but the week after day 8 is my worst for fatigue and diarrhoea so if you can do a 4 week cycle that works for me as then there is a week of feeling reasonably ok. Hope that is helpful - stay positive!! x