Anyone on Trodelvy?: After my last post... - SHARE Metastatic ...

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Anyone on Trodelvy?

Ticket123 profile image
Ticket123
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After my last post ( help with attitudešŸ™„) I found out that my next course of action is Trodelvy. Going to start on Friday. Has anyone been on this? Wondering about side effects and how long you got on it. Thanks for any input. ā¤ļø. Carla

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Yes I am on Trodelvy just started third cycle. Lost my hair completely two weeks in - started itching and then came out over night and in the shower. It had just started coming back so there wasn't much of it. So maybe start cutting it off now in small bits so it isn't such a shock.

They scared me with side effect stories and I stayed home in fear the first week. The side effects aren't great but they aren't horrible. I did go to work a few times but the thought of using a public toilet room if things were bad kept me at home.

I have nausea most consistently. I try everything, I chew gum, I eat ginger chews made by Dramamine, I take Aleve, and when its bad I take Zofran. I drink Calm (magnesium drink) sometimes before bed so I don't get constipated from the Zofran. I eat little snacks all day long - protein bars, crackers, popcicles, etc. It seems strange but food helps the nausea.

They told me the first round would be the worst because the meds work so well and so fast - it just dumps the bad stuff out of your liver quickly. This was the case for me. They gave/give me extra fluids with my pre-meds IV plus steroids, benedryl, and anti-nausea.

They told me diaharrea (sp) would be bad but it hasn't really been the case. I've had some feelings of urgency and gas pain but not full on.

Its working and they even started talking about backing off dose or frequency if the trend continues.

Good luck and DM me if you need anything.

Allison

Ticket123 profile image
Ticket123ā€¢ in reply toIwasborntodothis

thank you for replying! I get my first dose tomorrow. Iā€™m glad the med is working so well for you. Iā€™m curious when the side effects started? Again thanks for the info. I appreciate it.

Iwasborntodothis profile image
Iwasborntodothisā€¢ in reply toTicket123

Side effects almost immediately after the IV pre-meds wore off - so 48 hours.

Sparky95 profile image
Sparky95

I just finished 8 cycles of Trodelvy. I lost all of my hair but otherwise I found the side effects easier that the other drugs Iā€™ve been (Xeloda, Gemcitabine). The two weeks on a s one week off was okay. I developed constipation from the premeds so I got use to using Senna to help there. Iā€™ll be sending prayers that Trodelvy works for you.

Ticket123 profile image
Ticket123ā€¢ in reply toSparky95

thank you!!

Hi! I was on Trodelvy until it stopped working for me. Well, actually, it never worked as I started after my March scan and there was progression at my June scan. I have moved on to my next treatment.

Side effects include hair loss, nausea, tingling in fingers and toes. They give enough pre-meds to prevent most of it (and make sure they do!) Just keep your nausea (and other) meds on hand.

Anne (in Cincinnati)

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