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Sacituzumab Govitecan (Trodelvy)

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  • DoubleBloom
    DoubleBloom Member Posts: 29
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    Elligtr Welcome to the group. You sure have been through a lot. Sorry to hear about the liver mets. I don't have any experience with those since all my mets are within the central nervous system (brain and spine).

    AmyQ Congrats on your good news! Gamma Knife is an incredible procedure and I'm psyched that it can be used over and over again if those nasty little tumors come back. Trodelvy is a promising drug despite it's side effects.

    My doc just did a Guardant blood test on me. It's pricey... around $3000... but my insurance paid for it. The test found a DNA mutation that can be targeted by medication called Zejula and the doc was very excited about this. He's planning to discuss my case with the tumor board and I'll find out the exact game plan about my treatment in two weeks when I'm due for my next Trodelvy treatment.

  • Elligtr
    Elligtr Member Posts: 7
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    • Amy, glad for you! and Doublebloom, that's great the Guardant was paid for and picked up a new option. Perhaps you could share the mutation ID I did have the Guarand done last year and it really didn't pick up anything for me and they sent me a $7000 bill, which eventually the doctor and insurance worked out. I may ask if we can do it again, although with the new liver spots, the biopsy would make possibly more sense to do; My MO is a fan of the Guardant test. I am also thrilled to hear that Trodelvy may be active in the brain, that I hadn't heard, so as I'm deciding next treatment, that points favor on Trodelvy.
  • Lainey64
    Lainey64 Member Posts: 127
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    Hello everyone, I would like to join this group if you will have me! I have been around the boards since 2008. I was diagnosed with TNBC in 2008 and stayed in remission until my 2015 recurrence. Since then, I've tried everything under the sun it seems. Things worked, then stopped working, time to change, etc. I think most everyone here knows the drill. I've been on Navelbine for the last year with stable results but my last PET scan 3 weeks ago showed some progression so it was time to finally switch to Trodelvy! I have to say that I was excited about it. Well, I just completed my 1st cycle. Today is my off week. I went in for labs and and my WBC is very low. I never had to deal with this while on the Navelbine. They gave me some fluids and wanted to get me a WBC booster shot but insurance is dragging it's feet with the approval so that probably won't happen until Monday. So, after 2 infusions, my side effects are fatigue, nausea, small rash on my hips and terrible mouth sores! Pretty much all of the usual suspects. Thankfully, no diarrhea yet. I think it's because I've been taking Zofran for the nausea and it's offsetting it with its lovely constipation SEs. lol. I have noticed my hair is coming out more each time I wash it. I wear it very short so I hope it's just thinning but we'll see. It has finally grown all the way back since I lost it 2 years so this is bittersweet but the dreaded Texas Summer heat is coming so I guess if it has to happen this is the right time.

    Like I already said, I am very excited to finally be trying this new drug and hoping for good results. I'm sorry everyone else on this thread is going through it as well but at the same time, I'm so happy to join you on the journey. i will try to update as much as possible and stay on top of it! Have a wonderful weekend all!

    Elaine

  • moth
    moth Member Posts: 3,293
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    Elaine, hi! Were you diagnosed with mets in 2008 or in 2015? I'm confused between your post and sig line. But either way that's pretty impressive OS for TN.

    Can you join us on the Stage 4 TN thread too? https://community.breastcancer.org/forum/8/topics/...

    I'd love to know the details of your mets & all your treatments because we all learn from each other's treatments and certainly you've had excellent response to treatment.

  • DoubleBloom
    DoubleBloom Member Posts: 29
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    Elligtr: My mutation is called Chek2. There is a drug called Zeluja which my mo is considering to target it with. I'm excited about having this option. Not sure if he'll discontinue the Trodelvy or keep it. Despite the side effects I'm afraid to dc it because I want to pack as much of a punch as I can with the chemos.

    Elaine, Welcome to the group though I'm sorry you have to be here. I too had severe mouth sores (magic mouthwash, steroid mouthwash, ambesol and biotine lozenges all helped). My rash was so bad (from my hips to my shoulders and all the way down my arms) and I also had a fever from being neutropenic. My WBC was .02. I had to be admitted for five days. The rash is usually a one time thing, and now Zarxio shots help with the neutropenia. Hope you feel better soon.

  • s3k5
    s3k5 Member Posts: 411
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    DoubleBloom sorry to read about the mouth sores and rash. I hope this treatment is working for your mets. It's good to have the next option lined up. Does your onco order a MRI to check if the drug is working?

    Elaine, welcome to the group. I hope you have a good outcome on this treatment.

    Yesterday's PET scan report said that my liver mets and some of my spine mets have a higher avidity than the previous scan done in May2021. This is after only 2 cycles. My MO is concerned that Trodelvy is probably not doing anything and may switch to something else. She has ordered a MRI of the liver to confirm this. I guess I'll find out next week.

  • DoubleBloom
    DoubleBloom Member Posts: 29
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    sk35 I wish you immense luck with your liver MRI. I also have MRIs of my brain and spine every three months. to follow up on the effectiveness of treatment.

    Have a great weekend everyone!


  • AmyQ
    AmyQ Member Posts: 821
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    I've completely lost all my hair while on Trodelvy. Has anyone had their hair re-grow even while they continue on this drug or do I have to completely stop this drug before my hair will grow back?

  • s3k5
    s3k5 Member Posts: 411
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    DoubleBloom my MRI scan showed that the liver mets have increased in size, which correlates with PET scan report. So I am officially off Trodelvy. Biopsy results had showed 'mixed clones' with ER/PR+ve and most tumor cells in liver are TNBC. So I am not a 'true' TNBC which explains why Todelvy didn't work. I had failed all anti-estrogen therapies, so immunotherapy is my last option.

    Yesterday, after talking to the insurance pre-authorization guy for 45 mins+, my MO started me on Keytruda + Carboplatin + Gemzar. I am hoping this immunotherapy works and gives me a longer run without progression.

    AmyQ,I lost all my hair on "Anthracycline' which I had prior to Trodelvy.

    For all of you on the same journey, I hope Trodelvy works for you and is tolerable.

  • DoubleBloom
    DoubleBloom Member Posts: 29
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    S3K5 I am sending positive vibes so that you immunotherapy is the perfect drug to get rid of your cancer.

    AmyQ I lost all my hair after my 2nd treatment of Trodelvy. It didn't grow back until after my treatment was over.

  • AmyQ
    AmyQ Member Posts: 821
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    While I hope to continue on Trodelvy for a long time, I was hoping my hair might start to grow back. Thank you DoubleBloom & S3K5

    Amy

  • rethink_breast_cancer
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    My name of MJ DeCoteau and I am the executive director of Rethink Breast Cancer.

    We are looking for woman who have been treated with Trodelvy for metastatic triple-negative breast cancer to talk about their experience.

    You can find more information in the Stage IV and Metastatic Breast Cancer forum or please send me a private message if you would be willing to participate.

  • Grannax2
    Grannax2 Member Posts: 2,387
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    Does anyone know if Trodelvy is going to be approved for ER+. and when?

    I usually post on the liver mets thread. I’ve heard about this drug and Navelbine recently failed for me. Lots of others have failed as well so I’m curious aboutthis one.

  • olma61
    olma61 Member Posts: 1,016
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    This is not my thread since I’m not on Trodelvy but to Grannax - this drug is now in trials for ER+ is there any way you could get on one of the trials? Maybe your MO can help?

    Sorry for any intrusion

  • moth
    moth Member Posts: 3,293
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    "Sacituzumab Govitecan for Metastatic Triple-Negative Breast Cancer: Clinical Overview and Management of Potential Toxicities " June 27, 2001 from The Oncologist

    https://theoncologist.onlinelibrary.wiley.com/doi/...


  • Hollyli1202
    Hollyli1202 Member Posts: 122
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    Hello... looks like I am going to be joining this thread. I have TNBC and it's continuing to rear its ugly head. After four months on carbo+gemza+pembro, my MO is putting me on this. I am hoping it will be kind on my body and help stabilize the cancer. It's currently in lymph nodes in my abdomen and my pleural lining. I've had numerous thoracentesises and just got out of the hospital with pneumonia and a chest tube. I am hoping this stabilizes my mbc. How did you do with the first treatment? Did you get nausea/diarrhea right away?

  • nayda985
    nayda985 Member Posts: 270
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    hello everyone :)

    I am sad to be joining this chemo train...but I am glad this thread is here...lol...I had stopped chemo back in november of 2020 due to clear scans...i have been so happy for the last 7 months...last scan showed it has came back in my lungs/liver/lymph nodes in stomach...oncologist says he wants me to use this chemo..says it's new. My insurance delayed my treatment, I was suppose to start two weeks ago.

    I was given 6 premeds...i sat in that chair and said omg...with my previous chemo's i got probably 3 premeds. They gave me zofran, decadron, benadryl, tylenol, atropine shot, i cannot remember the 6th one...lol..she ran the premeds, afterwards i had to wait 30 minutes for the premeds to what i call marinate..lol..then she started the chemo, which ran for 3 hours...because it was my first time on this chemo...i had to wait 30 minutes after finishing to ensure i was fine before i left..i spent half the day at the cancer center.

    When i got home, i was still running off the steroids...felt fine..took my nausea meds like clock work...so no nausea the first day. I started feeling it today, Tuesday. Even though i have been taking nausea meds around the clock, I have been nausea all day, fatigued, nasty taste in my mouth, no appetite (i had to make myself eat and drink), stomach aches off and on...no diarrhea (i believe the zofran/morphine is keeping it at bay)...and i have been feeling pain at the top if my thighs for some reason, when reading the previous post, i didn't see anyone experiencing that side effect...i am going to bring it up with my onc next week.

    I will have to do this chemo for 3 months. After reading previous posts, I am hopeful and have faith in God that this is going to work. I am praying the side effects lessen.

  • nayda985
    nayda985 Member Posts: 270
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    can anyone help with diarrhea?

    I take the imodium like I am suppose to and I have having diarrhea for 8 days. Will anything else work?

    Thanks

  • DoubleBloom
    DoubleBloom Member Posts: 29
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    Are you taking over the counter of Lomotil or prescription? Your doctor may have a stronger prescription medicine that may help.

    When I was on Trodelvy I had diarrhea the first week followed by constipation the second. Luckily, the Lomotil worked for me.

    Good luck to you!

  • nayda985
    nayda985 Member Posts: 270
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    Yes I have the Lamotil, but its only helping withe cramps.😔

  • moth
    moth Member Posts: 3,293
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    nayda. have you told your ocology team? the loperamide dosage can be changed by your dr.

    if you don't respond to the loperamide dosages for chemo related diarrhea, there are other meds they can try

  • nayda985
    nayda985 Member Posts: 270
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    I will see them Friday. Thanks everybody. Just miserable.

  • moth
    moth Member Posts: 3,293
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    Nayda, diarrhea can be life threatening. I suggest you call your cancer Center and report your symptoms today. They will want to know how many more stools than normal you are having in a 24 hour period.

    Also maybe check out the main top post on this verzenio thread as there is a diarrhea management protocol there which is excellent. https://community.breastcancer.org/forum/8/topics/...


  • nayda985
    nayda985 Member Posts: 270
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    Moth - I will call my nurse navigator today. And definitely check the link.

    Thank you so muchHeart

  • moth
    moth Member Posts: 3,293
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    Wrenn, thank you for passing on the msg. I will re-post in a couple threads she posted on.

    AmyQ, big hugs.

  • moderators
    moderators Posts: 7,981
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    AmyQ, you are in our thoughts and sending big hugs as well Medicating

  • Dlove72
    Dlove72 Member Posts: 47
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    Hi! did you experience all the side effects even with a 50% dose? Like hair loss? I’m starting tomorrow but in a clinical trial at 50% dose. Just unsure what to expect!

  • nicolerod
    nicolerod Member Posts: 2,877
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    HI ALL... I am starting Trodelvy on the 14 of Dec. Any tips? I already know about the hair loss (i have none anyway) and the Diarrhea I am majorly prone to consitpation so not worried about that...and hearing that WBC can drop low.... and that side effects kick in about 3 -4 days after infusion.and to make the infusion 3 hours long (which my MO did).....any other info I might need?

  • moth
    moth Member Posts: 3,293
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    Sacituzumab Govitecan for Metastatic Triple-Negative Breast Cancer: Clinical Overview and Management of Potential Toxicities

    https://theoncologist.onlinelibrary.wiley.com/doi/...

  • nicolerod
    nicolerod Member Posts: 2,877
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    Got the infusion today...I dropped one of the diarreah meds...kept the Zofran., reduced steroid from 16mg to 8mg , 2 600 mg Tylenol (orally) 25mg benedryl. Infusion went well...I am told day 3-4 should be when it hits SE's bc the premeds wear off then... praying for minimal to no side effects...