Sacituzumab Govitecan (Trodelvy)

spouse4life

My wife is about to start Trodelvy and was wanting to know from those who are/have used it, how significant is the hair loss from this medication and if you used the cold caps with success.

Thanks very much.

cathywh59

I am glad to see a forum on Trodelvy. I have had two rounds already. My liver enzymes are going down so I hope that it is a positive sign.

How are ya'll dealing with the nausea?

Cathy

amel_83

I just found this old post about Trodelvy?

Anybody on it? How is it? Do you loose your hair? Nausea? Etc..?

I may have to go from Xeloda to this, I just don't understand one things...is not Trodelvy for TNBC, or for who have an high TROP2? I don't have an high TROP2, and i'm still 90% ER+...i think i would prefefe something else.

Hopefully i don't have a recurrence and stay on Capecitabine, but I like to look haehad...

Thank you for any info!

margesimpson

Bumping hoping someone sees this!
I read earlier comments from a few years ago saying people lost their hair, I was wondering if there is anyone who can give an update on how they’re going? I’m starting next month.

rlschaller

hi everyone, just joining this thread and glad to read about everyone’s experiences. So helpful. I start Trodelvy next week , I have high hopes it stops the progression in my right breast and skin. Enhertu lessened the cervical spine lesion and cleared another, but stopped working on the breast tumor after 5 months. And the triple negative tumor started growing again, fast! Ugh. Onward , grateful there are chemo choices. Wishing everyone well.

margesimpson

@rlschaller this thread doesn’t seem very active, could you please share your experience as I’ll be a few weeks behind you?

rlschaller

Hi all, I’ve been posting about my Trodelvy experiences in another thread… so many threads I’ve forgotten what I post where… lol. But for all Trodelvy users thought I’d cycle back here. I started Trodelvy in June after Enhertu failed, and am on cycle 3 day 8 tomorrow of Trodelvy.
All in all, I’m loving Trodelvy. After almost 2 months it’s been easy to tolerate and is working so far. A lot of premeds though, but happy no nausea or diarrhea. I work full time and am out and about so no complaints. Wish I didn’t have to go in for infusions 3 x a month (day 1, day 8 and start again day 21) but it is what it is. Enhertu was only once every 21 days, but my breast tumor pushed right through it and started growing with it , though one of  the 2 of my cervical spine mets resolved on Enhertu so it’s a good drug as well.

Trodelvy for me carries very minimal side effects, “sludgy “ slight off feeling on day 4 for the morning in each cycle and then it passes. To counter my lower WBC I self administer a zarxio injection the Saturday after infusion which is easy. I did loose my hair however. But have an amazing wig from a salon called Bits n Pieces In Manhattan, which I highly recommend. The Trodelvy has so far been amazing, my 8cm tumor in right breast is hard to locate now via physical exam , and the skin lesions have healed tremendously. Have Pet scan on Thursday and will see how the cervical spine lesion is doing, and breast MRI in September.

rlschaller

still on the Trodelvy train. Just finished cycle 5, SE are minimal. I did loose my hair, but love my wig. I named her Leya lol.. Will start radiation for the skin Mets which we’re getting better but not are getting worse again. I will have 15 whole breast treatments and then a boost week. I’m hoping this takes care of it. MO wants me to stay on Trodelvy since the tumor in the breast was responding really well, and all other troublesome areas have resolved. I’m so hoping the radiation treatment creates a stable result.

foxanne

Hi ladies,

Anyone still on Trodelvy?

rlschaller

@foxanne I’m no longer on Trodelvy, but it was effective for a few months. Happy to answer any questions you have though about the experience, if that is helpful.

Hopefully others who are on it currently will pop in.

gamorgan626

I'm having to do chemotherapy again for the second time and I'm not ready. I'm allergic to steroids so it makes it difficult to receive any chemotherapy. You name the drug and I've had it. Every drug has caused severe reactions as soon as it hit my bloodstream. My legs immediately end up experiencing tremendous pain and they have to give me demoral for the pain. Then my blood pressure goes sky high, I throw up and then I pass out. It happened every time with every chemo drug. Now I'm stage 4 triple negative/her2 plus positive and they want me to try troveldy. My kids who are grown adults want me to do it and I even told my oncologist I would try it but now I'm not so sure. I really am ready to quit and just let palliative care take care of me. I've had a mastectomy and I'm so over the pain of everything. I'm sick of the dr appointments. I'm tired of traveling 3 hours back and forth to the Mayo Clinic and I personally don't want to lose my hair again and spend another year in my bed being constantly sick. I have to go to the Mayo Clinic tomorrow and meet with my counselor and the breast clinic team but I feel like telling them I just want to quit. I'm sick of fighting this cancer and I'm sick of everything that goes along with it. I feel like if I don't do it my kids won't forgive me and I feel like I'm being pushed into this. I really don't want to do it again. Am I the only person who feels this away. I just can't make up my mind. One minute I tell them I'm going to do it then the next minute I tell them I can't go through this again. I just can't. I don't know what to do and I'm in a constant battle with myself. I really am lost.

tougholdcrow

@gamorgan626 I am so sorry you are going through this decision. This disease is wretched. There have been women here who have made the decision to quit treatment at some point, many others fight to the end. I would certainly ask your oncologist to get you a palliative care specialist at Mayo Clinic. Palliative care is not just end stage, but works with patients to help ease physical and psychological effects of care. This person might really help mitigate some of these awful side effects, and many folks here have recommended this kind of consultation. You don't have to go through this without help.

aj

@gamorgan626 , follow your gut after you get all the information. And it’s your decision, not your family’s.

moderators

Hi @gamorgan626, welcome to our community. We're sorry you have to be here, but glad you reached out. It sounds like you’ve been through so much already, and we hope you’ll find support and connection here as you navigate this difficult decision. You’re not alone.

The Mods