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Sacituzumab Govitecan (Trodelvy)

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Comments

  • DoubleBloom
    DoubleBloom Member Posts: 29

    It's nice to hear from you, Libby. Good to know that nothing is growing... now I pray for you that things start shrinking. Glad to know your side effects are in control. It must give you at least some relief.

  • anornurse
    anornurse Member Posts: 28

    Libby, It's great to hear from you! Enjoy your next 3 months, you certainly derserve it! I grew up with a wonderful Mom and Dad who believed the glass was always half full. It must have rubbed off on me, lol! I have good news I would like to share and it's not about tnbc. Our daughter and son-in-law are going to have a baby in August! I'm going to be a Grandmom! Life is very special and it's nice to share with everyone! Sharon (anornurse)

  • DoubleBloom
    DoubleBloom Member Posts: 29

    HUGE CONGRATULATIONS Sharon!! That is something beyond special to look forward to. I'm very happy for you.

  • texaslaughter
    texaslaughter Member Posts: 9

    Just popping in to say I started my 10th cycle yesterday. I continue to be blessed with a great response. Labs all normal, with tumor markers within the normal range indicating little to no cancer activity. Last scan on 12/30 shows significant changes and reductions, I have my next scan in a couple of weeks. This is the longest that any treatment has worked for me since I became metastatic. I've been back to work fulltime for over 3 months in a high paced role, working at home during COVID, and been able to manage it fine. Being at home allows me to take naps when I need them. :) Glad to see many more have been able to gain the benefits from this drug. It's not the easiest, especially in the beginning, but it works. It really does. All the best.

  • norcals
    norcals Member Posts: 214

    Texaslaughter,

    Thanks for checking in and sharing your good news. It's very helpful to know that Trodelvy is effective.

    Anornurse, congrats to you and your family. Great news

  • sac321
    sac321 Member Posts: 8

    Is Trodelvy specific for Triple Negative or also can be used for er+/pr+/her-?

    I don't have triple-negative; mine is strong ER+ with Her2-. Today, my MO decided to go with Trodelvy after she felt Xeloda is not working anymore. Your input is greatly appreciated

  • moth
    moth Member Posts: 3,293

    sac321, I've only seen it recommended for TNBC. My copy NCCN guidelines lists it for tnbc. Keytruda (another immunotherapy) recently got FDA approval for ER+ tumors with high tumor mutation burden &/or microsatellite instability (established by genomic tests such as Foundation One) but I've not seen trodelvy recommended for that. Maybe I missed something ... hope someone else wades in with evidence for this

    ETA: link to FDA running updates on approved cancer treatments. Trodelvy is only listed for TNBC in April 2020. So I think this would be offlabel use?

    https://www.fda.gov/drugs/resources-information-ap...


  • sac321
    sac321 Member Posts: 8

    Thanks, moth. I noticed the same thing as you did, which is why I am asking here. I saw that "SusaninSF" had this treatment possibly because of her low Her2 (from the info below), but not sure.

    Topic: Are you currently (or have you have been) in a Clinical Trial? (page 53)

  • Wanderingneedle
    Wanderingneedle Member Posts: 220

    Unfortunately I may be moving off of Trodelvy. ☹️ My skin mets have returned - they are small bumps under my arm. I will have a scan in two weeks but in the meantime we’re returning my dosage to full strength for this cycle to see if it makes a difference since the skin mets almost completely disappeared after just the first cycle. After 3 cycles at full strength it was reduced because of side effects and that’s when the cancer stopped shrinking and stayed the same size. I just had a scan in January and showed nothing was growing or shrinking so I guess the cancer is pushing back now. My doctor ordered the blood test for circulating tumor cells dna and she has my last biopsy results and she clinical trials beginning soon and she researched TNBC. Almost all of her patients are metastatic. I’m in good hands. As much as I don’t like the side effects I’d like to get some more time out of this treatment before moving on because none of them seem to last long.

    I hope everyone else is doing well! Spring is coming and so much to look forward to! 🌸🌼🌷🌱

  • moth
    moth Member Posts: 3,293

    Wanderingneedle, oh I'm sorry to hear about the skin mets returning. Any chance they can be whackamoled through surgical excision or radiation? My team seems currently gung ho on treating anything that crops up as an oligoprogression (currently with rads) to delay moving off treatment. Do you have other mets which are responding at all?

  • Wanderingneedle
    Wanderingneedle Member Posts: 220

    Thanks, moth,

    She didn’t mention radiation or surgery. I had radiation there last year and these showed up about halfway through and I thought it was possibly from the radiation. Because of COVID my oncologist at the time was only doing online appointments even after he knew about the new skin mets (he never saw me). He offered me gemzar as a single agent and went to a second opinion about that treatment and I stayed. My current oncologist is looking for mutations and the scan will tell us if everything else is also growing. My first two oncologists would not be so proactive - just throw something else out there and see if it works.I asked to go back to the full dose to see if it would work because I hate to just give up. I’m so heavily pretreated now I hate to get rid of anything that’s working. It’s just the side effects that are hard.

  • thrivingmama
    thrivingmama Member Posts: 133

    Hi everyone. I am curious - has anyone been on a lower dose (like 50%), had progression, and then had success with increasing the dose?

    TIA

  • thrivingmama
    thrivingmama Member Posts: 133

    Hi. I am adding a bit more detail to my question, in case anyone has thoughts :). I also posted on the liver mets and enhertu threads.

    I am wondering if anyone has been on Trodelvy at a lower dose and then increased it with success? Also, does anyone have experience with both Trodelvy and Enhertu?

    I was on Trodelvy June 2020-Jan 2021. I was on a 50% dose the entire time, and I had a really spectacular response, but unfortunately had progression in January. We debated going up in dose, but decided instead to try Abraxane. While I had one of the larger liver tumors respond to Abraxane, the rest have increased in size and activity, so I need to move on. I am again thinking about going back to Trodelvy, but at a higher dose. I am also looking into access to Enhertu. So, curious if anyone has any experience or words of wisdom.

    I am heavily pre-treated and the Phase I trial world seems quiet right now....

    Thanks for any thoughts :)

  • moth
    moth Member Posts: 3,293

    Are you on Twitter because Dr Rebecca Shatsky is very familiar with Trodelvy, is doing research on it, and she interacts with pts and responds to questions a lot. https://twitter.com/Dr_RShatsky/status/13752389821...


  • thrivingmama
    thrivingmama Member Posts: 133

    Thank you for the tip! I've actually seen Dr. Shatsky and could probably reach out to her through myChart too. I'll check out her twitter. Thanks!

  • texaslaughter
    texaslaughter Member Posts: 9

    stopping by for a scan update. Just had my 3rd scan with trodelvy and on cycle 12?. I had too numerous to count liver tumors and 2 large at 13 cms. The smaller ones can’t be seen and the 2 are now grape sized and walnut sized at 3/4 cms. The side effects get so much easier but I continue to have a great response. My doc wants us to get another 6 months from this but it has literally been my life saver. God and modern medicine has been good to me.

  • anornurse
    anornurse Member Posts: 28

    Texaslaughter, Way to go! We are all rooting for you! Sharon

  • thrivingmama
    thrivingmama Member Posts: 133

    Texas - excellent news! thanks for sharing

  • DoubleBloom
    DoubleBloom Member Posts: 29

    I was on Trodelvy from Sept to Dec 2020. My treatment was every other week and I also had intrathecal topotecan every month.

    In Dec, my brain and spine were clear of any tumors so my doctor said I could come off all the chemo and take a break from all the side effects. Unfortunately my most recent MRIs in March showed three new tumors in the brain. I had gamma knife radiation last week and will go back on Trodelvy starting this Friday.

    How long have some of you been on Trodelvy without a break and what are your worst side effects.

    Thanks in advance.

  • s3k5
    s3k5 Member Posts: 411

    I am new to this forum but not new to breastcancer.org; I have been a member since 2008. It is good to read about all the positive stories regarding Trodelvy. If I get the insurance approval, I may be soon starting this drug,

    In 2008 I was initially diagnosed as ER+/PR+/Her2-ve but in Oct2020, my MO repeated the biopsy and genomic profile. It showed that the tumor cells had mutated to Triple negative. I had metastases in my spine only since 2013 but 5 years later it showed up in the liver. I have been through many treatments (12+) but none of them for longer than 4-6 months either due to side effects or due to progression. I had to stop the previous two treatments due to severe skin reaction and feet swelling. I have extremely sensitive skin.

    Is there anything I need to know about Trodelvy other than the listed side effects? I will ask my MO for prescription strength anti-diarrhea and anti-nausea medicines. Would it be a good idea to ask for a prescription for a steroid? Is anyone taking steroids to mitigate the side effects?

    All tips and advise about how to deal with the side effects are welcome. I am running out of options for the treatments and I need this drug to WORK. My liver and spine have diffuse metastatic lesions. I hope this turns out to be a miracle drug for me, just like it did for others on this forum.

    Keeping my fingers crossed for the insurance approval.

  • anornurse
    anornurse Member Posts: 28

    Hello, I have been on trodelvy since 5/20. when it first came out. I am taking a break from 3/21 til present. I have tnbc, brain, spine and both lungs. I received the cyber knife for both lungs which is working well. I believe in trodelvy very much. Please read Gilead Science's press release from 7/7/21. It has received full FDA approval. I think you will believe as well. Sharon

  • anornurse
    anornurse Member Posts: 28

    I am off trodelvy now, since 3/21. I received the cyber knife to both lungs and it is working well. My diarrhea was manageable with over the counter meds. My white cell count was normal. My hemoglobin went down to 8.8. Please read Gilead Science's press release from7/7/21. Trodelvy has full FDA approval. The press release is very encouraging! Sharon

  • DoubleBloom
    DoubleBloom Member Posts: 29

    S3K5... It's nice to have you in the group. I didn't need steroids while on Trodelvy though the nurses gave me one pill as a part of my premeds. I did develop a severe rash and became neutropenic which required a 5 day hospital stay. After that I took Zarxio injections to keep my blood counts up. I had a week of constipation followed by a week of diarrhea. Fatigue was always an issue.

    Anornurse... Thanks to mentioning Gilead's press release. Congrats for getting off the Trodelvy. Your good response is encouraging.

  • s3k5
    s3k5 Member Posts: 411

    DoubleBloom and anornurse thanks for your response.

    It is awesome to hear positive stories about this drug. Yes, I have been reading and following everything about this drug since I knew this was probably on my list.

    Sharon, are you on any other treatment or is your MO planning to monitor you with scans?

    DoubleBloom when you were on Trodelvy, what did you do for your skin rashes? Did you take any steroid for that or did the rash resolve by itself? When did you develop the rashes? Thanks for letting me know about neutropenia. I'll ask my MO to give me Neulasta or Nupogen to prevent this. My MO had ordered Dexamethasone IV (steroid) and Aloxi (anti-nausea medicine) as premeds with other chemo regimens (Taxol). Hopefully she may put in an order for these again with Trodelvy.

  • DoubleBloom
    DoubleBloom Member Posts: 29

    S3K5...I was on Trodelvy for four months from last Sept to Dec. Tough side effects plus negative scans made my MO advise a break from all chemo. I think he was very surprised to see the tumors come back so quickly. The skin rash only happened once, after my 2nd infusion, and I was admitted to the hospital. Because my WBC was only 0.04 I could not be put on steroids at that time since steroids can increase the risk of serious infection. I was placed on all sorts of antibiotics and discharged when my blood counts improved. I only receive dexamethasone as one of my premeds on the day of infusion. I start back on Trodelvy and intrathecal topotecan tomorrow. My doc doesn't think the rash will recur.

    Let me know if you have any other questions.

  • Wanderingneedle
    Wanderingneedle Member Posts: 220

    S3K5,

    these are my premeds - Tylenol, Zyrtec (or Benadryl), dexamethasone, famotidine, fasoprepitant, heparin, and aloxi. These are given to everyone on this regimen at my cancer center. I started at 100%, then reduced because of side effects but I had some progression so back to 100%.

    If you are on Facebook there is a group for Trodelvy. Some people tolerate this treatment very well, others have all the bad side effects. My worst has been fatigue and diarrhea/constipation issues. Diet helps some with the gut issues but the medicines are necessary for me. In the beginning I had 2 blood transfusions for the fatigue (reduction of red blood cells/hemoglobin/hematocrit) and the dose reduction helped with that.

    I will be getting radiation for the new spot on my pelvis and continue with this for now. I don’t have a heavy tumor burden but nothing works for very long. I hope it works well for you!



  • anornurse
    anornurse Member Posts: 28

    I received cyber knife to my brain and both lungs and get monitored by a cat scan of my chest and an MRI of my brain. I have been off the trodelvy since 3/21. That’s my story and I’m sticking to it, lol! Sharon

  • DoubleBloom
    DoubleBloom Member Posts: 29

    Wanderingneedle... Sorry to hear that you required blood transfusion and now radiation. I wish you immense luck with that and tolerating Trodelvy. I've had abdominal pain and my onco prescribed hycosamine for it. It's a sublingual tablet that does help. I also use miracle mouthwash for burning in my esophagus. I can't tolerate anything spicy or too acidic. I found I was eating a lot of bland carbs and packed on 15 pounds which is a nightmare to lose when I have so much fatigue.

    Anornurse... I pray that you have a nice long remission!

  • Grannax2
    Grannax2 Member Posts: 2,387

    I’m new to this thread. Just trying to educate myself in case I need Trodelvy in the near future. I have a long, complicated history of BC and MBC. Yes, I’m heavily pre treated, etc. My MO said after so many different chemos, Ibecome resistant and my odds are low for my cancer to respond

    At this point, I have diffuse liver mets and very few choices left for chemo. I’ve been on BCO since 2017. I’ve exhausted all options for local TX to liver. I also have lung mets. It’s a long story.

    I’m on Navelbine right now. I just started it after Eribulin failed. I post mostly on the liver mets thread.

    So, I’m curious to hear about your experiences on Trodelvy. 💞

  • DoubleBloom
    DoubleBloom Member Posts: 29

    Hello Grannax2... Welcome to the grouup though Ii wish you didn't have to be here. I've been battling MBC since 2017 like you however my mets are just in my brain and spine. Trodelvy is a very promising drug and if you get started on it I hope you have a positive outcome as several us have experienced. You can read back to some of the previous posts to see what the side effects are like.

    Also, read Glilead's Press Release as anornurse suggested. (I hope the link works)

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