Trodelvy - Looking for positive feedback
Good morning everyone! I have been fighting this battle since 2004 when diagnosed with Stage 2 B breast cancer with metastasis to one node out of 15. After a partial mastectomy and taking Arimidex for 8 years, was in remission until 2019 until it came back with a vengeance to a Stage 4 with mets to my bones and a lesion in my kidney (stable). I have been taking a variety of oral agents over the past couple of years until they were no longer effective when my scan results showed mets to the liver and omentum. For the past several months I have been on IV Enhurtu with great success but unfortunately now this drug is failing. I will be starting Trodelvy this Friday and hopefully would love hear of feedback about this drug. I am concerned about the diarrhea, but I had that with Enhurtu as well and have managed that well with Lomotil. I am nervous to beat the band…argh!!!
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Hi @kassjanine, and welcome to the BC.org community! We're sorry you had to find us for this reason, but glad you did and decided to share your story. We understand the concerns and nervousness that come with trying a new treatment. We hope that other members will soon join in, sharing their own experiences and support. In the meantime, we wanted to invite you to our weekly Zoom meetups for MBC, a virtual get-together where you can ask questions in real-time, as well as hear about similar experiences from others. In case you might be interested, click the blue link for more information.
Hope this helps! Wishing you the best for this new phase of treatment.
Warm regards,
The Mods
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Hi @kassjanine just noticed your post here about starting Trodelvy last December. I’m also stage IV with bone mets and started Trodelvy at the end of June after Enhertu stopped working. It’s only been 2 months but it has resolved the Mets at my cervical spine, and so far the tumor in my breast is lessening. Favorable partial result so far. How are you doing? Are you still on Trodelvy?
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Hi @rischaller! Looks like @kasjanine has not been active since February. If you’d like, you can reach out to her via private message.
We're super glad to know that Trodelvy has been working well for you!
Best wishes,
The Mods
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My Mom took Trodelvy for a while. She managed the symptoms well. They did lower her dose once. But overall, she would have a couple days she didn't feel well then bounced back and did good. She has constipation which is her norm. Not much diarrhea.
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thanks @sjtrout1 for the info. I’m similar to your mom, not much to complain about with the Trodelvy.
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Bumping this thread to see whether others have joined the “Sassy G” bandwagon recently. That abbreviation is what an oncology pharmacist told me they use for the generic name of Trodelvy! Due to my requiring dose reductions in the past for everything I’ve taken because of side effects, I started at 20% less than what might be ordinarily recommended.
I’ve had two infusions one week apart and seem to be doing OK with the many pre-meds & things to take at home. The dexamethasone gives me a bit of a steroid high. Zofran/ondansatron keeps nausea away however also constipates me so I add a stool softener (docusate) sometimes with senna which is a mild stimulant laxative.
The protocol includes famotadine which is good because I do experience gastric reflux especially during the night. Zyprexa, generic name=olanzapine 2.5mg is prescribed at bedtime for 4 nights. Unfortunately, my ANC went down from 2360 to 1390 in just 7 days. I hope there can be a nice long run on this treatment otherwise I’ll go to eribulin then ???
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@vlnrph hope you get a long run on Trodelvy. I was on it from June till October, and it worked great during that time. I did not have many SE that were difficult. My WBC were low so had Zarxio injections which were easy to administer. Had some rash type allergic reactions but low level, took antihistamines xyzal and Pepcid daily which helped. And I also used colace as stool softener. The premeds are extensive, but awesome that they worked. Good luck !
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So much can happen in just a few days. Since my mostly positive post a week ago, sore mouth and hair loss (for the 3rd time!) began at the same time. Finding it difficult to eat much, I consumed chocolate Ensure and very small bites of other soft food. Fortunately, salt water rinses helped quite a bit but I probably lost a little weight and felt quite weak.
Funny that the prescribing information says alopecia is 43%. Apparently some can start to grow back while on treatment. I laid in a supply of scarves and headcovers previously plus had wigs from before. My favorite was a red one although I had always been a natural blonde. Even though the last round grew back brown, at least it wasn’t gray!
My oncologist scheduled extra time off for me because I have a Christmas concert to play mid-month. We remain isolated from crowds and mask when leaving the house. Both of us had influenza & COVID update vaccinations earlier this fall. I shop on line now instead of going into stores. It’s a different take on “retail therapy”…
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@vlnrph i know, in a blink of an eye everything can change. For sore mouth, when I was on Xeloda the pharmacist recommended a salt water rinse which actually helped. I lost all my hair on Trodelvy in like 2 days ! I bought a wig, which I love. I named her Leah lol… now that I’m off Trodelvy since end of October, my hair is growing back already ..I kind a like the fuzzy scalp. Love the retail therapy , but I really enjoy shopping online so not sure if I am saving money there. Good luck with your concert, do you play an instrument or sing? Wishing you a lovely holiday. Rhonda
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@rlschaller Tumor marker CA 15-3 nearly doubled to 207 this week from 104 earlier in December, a bit worrisome but my liver enzymes are OK at present. Of course, I had an extra 7 days off this month in order to be in decent shape to perform on violin in an orchestra concert. It’s a huge part of my identity, having played for nearly 6 decades, since age 8.
Blood work also showed my anemia to have cleared up with hemoglobin + hematocrit in normal ranges! That, and the dexamethasone, meant I was straightening up the house in the wee hours of the morning last night. I held ice in my mouth during the most recent infusions in an effort to reduce any soreness that may occur again.
Also had cold packs for my eyes. Other meds of similar type can have ocular toxicity. “Seeing” an optometrist in January so I can get a referral to an MD ophthalmologist. If things go OK, I may ask my oncologist to put me up to a full dose at some point. We began at 80% because every treatment I’ve ever had required reduction from the standard starting level…
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vlnrph,
Did your Hbg and Hct drop after starting Trodelvy and then improved after having an extra one week off?
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Wishing everyone a happy new year and with much to be grateful for.. we are still here sharing and supporting each other. Inviting adversity with open hearts and friendship. A toast to living life out loud , with music, art, (cats ) and companionship ❤️.
@vlnrpg how amazing you play the violin, one of my favorite instruments to listen to. I paint, though mostly draw these days with zen digital black brush . I will try the cold packs for the eyes. So far my eyes are fine, but I read a lot and I can feel the strain after awhile and words do get blurry. Yeah for your anemia improving! I forgot to mention that the mouth rinse uses a tsp of baking soda, salt and warm water.@weniwe so glad the Enhertu has worked for you, I remember when you started it. ❤️
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@weninwi My hemoglobin has been hovering around 11 with the bottom of a normal range being 11.6 so I’m still slightly anemic. I only get labs on infusion days, not every week. A single drop or upward reading does not make a trend. Trodelvy has been tolerable especially with the pre/post med regimens.
I cancelled the OD appointment because I’ve been going to the dentist so much. Another bridge is being made. Meanwhile, my front teeth fell out and had to be recemented. Also, I’ve been back in water exercise classes which were on hold in 2024 due to capecitabine. They serve as social events too!
My other activity has been going through collections accumulated over the years. I donated a bunch of violin items to a local community orchestra. They have an annual fundraiser around Valentine’s Day where people bid on themed baskets. Stuff I had included Irish fiddler figurines, frogs for springtime, angels, etc.
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Had an MRI in early February due to feeling pressure on my right side under the rib cage. I thought my liver might be inflamed. Scans were already scheduled which meant having it a couple weeks early. That was fine with my MD. It appeared that several lesions had actually shrunk a little!
The sensation may have been tumor flare. That situation correlated with a small drop in the CA 15-3 number. Now awaiting nuclear bone imaging results and chest CT. Those tests are done instead of the PET performed periodically at my previous cancer center.
I’m perturbed that influenza seems to be raging at present. My husband & I were immunized against that last fall when we got our COVID boosters. Also, we mask everywhere (except in my water exercise classes). People need to stay home if they’re sick.
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@vlnrph glad the liver inflammation was tumor flare and the lesions shrank a little. Good news is good news . Good luck with the rest of your tests . I mask when I go out on public transportation, last thing I want is the flu! Agreed, wish folks would stay home when they are sick. I had to go to the office in early February and my boss turned to me and said she had a sore throat. I asked her why she was in? And she was not masked … the next day she texted me she was positive for Covid ! Thank goodness I was masked and did not get it. People do the strangest things !
Happy Monday. ❤️
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how is trodelvy working out?
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@foxanne Sorry for this delay however the extra time provides space for a better response! I’m generally doing well on Trodelvy especially with the extensive pre- and post- infusion meds. No nausea, etc. A tiny bit of steroid stimulation the 1st night.
Scans earlier this month proved stable along with tumor marker CA 15-3 hovering just above 200. We’re planning a road trip to visit my 88 year old father, a stubborn old Kraut. He is in a memory care facility near my sister.
I played violin in an orchestra for a children’s concert this week and will, hopefully, close out the season with Bruckner’s 7th. I’ve rarely played his works, probably because they’re so long. This symphony runs a full hour & I’ll require stamina…
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