I’m looking for anyone on the same treatment to share experiences side effects and offer support. Anyone out there?
Hi @whatagain8,
Welcome to the forum, we hope you find it a helpful and supportive place.
I’m sorry you haven’t had a response to your question. I’m sure someone will be able to share their experience with you. In the meantime please know that our nurses are here for you any time, here on the forum on the Ask our Nurses your questions or over the phone 0808 800 6000.
Sending our love,
Alice
Hi whatsgain8
I’m on Trodelvy. Took a while to settle in and had dosed reduced by 25%. But, touch wood, mostly seem to be doing ok now. And managing to live pretty well.
How are you doing?
Sending good thoughts and solidarity!
@iloveeddie
X
Hi there, I had a year on Trodelvy. I learned a lot about how to manage it in that time.
I was very scared starting in Nov 22 as the first person my Onc had. It was the first chemo that gave me shrinkage in my Liver tumours. Alas that changed through the late Autumn, but complex as two big ones grew little ones went. We all react differently to every chemo of course. However a common thread is was management of diaohrea. There were difficult days and I got to a point of mostly being able to head it off with loperamide. In 2023 I managed to live well around the cycle. Being with loved ones is my priority. Breaks with my partner friends and family after day 8. This included the lakes, Norfolk, Manchester, Lytham, Brighton, the Algave, Barcelona, 14 day med cruise, Crete, Isle of wight and Iceland (with my 3 grown up kids) . I delayed treatment one week in July to get 14 days. My point is although it’s a very harsh chemo on your body you can learn to work with it. During my May trip I realised I had put weight on every month. I came home and joined a concessionary fitness package and started Zoe. The glucose monitor was a revalation. I took it through a chemo cycle. Then learned more that the chemo nurses know and don’t discuss about steroid impact. I’m now very aware of what I eat, when and how. I’m sailing close to the prediabetic range. I’ve only lost a couple of kilos but generally health was/is my concern. Through Aquafit, swimming a bit of resistance work, pilates and keeping up daily dog walks I’ve got much more stamina and a better muscle ratio. Little and often is what I try to do. I hate being stuck indoors, when I have awful days I try at least get fresh air. The hairless is pretty much a given. I’d lost it back in 2012 so had insight in adjusting. No eyebrows or lashes always upsets me. I’m adept at drawing on my face to look like a new natural.
I did reduce the dose of Trodelvy after 3 sessions first 6 weeks were too much, my Oncologist thought I would end up in hospital as I became Neutroponic very quickly. It stabilised at 80% and I was able to build quality back in to life.
I hope your early cycles are good and it works for you. I found a private Facebook group on Trodelvy really helped me. It’s been in the wider world longer than England so I found tips and support from an international community helped. Send me a message if you want details or any direct support.
I had hoped for more than a year on it but I will take that. Five years ago I thought I might not see another. I started Gem/carbo, yesterday so next few weeks adjusting to that.