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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