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Sacituzumab Govitecan (Trodelvy)

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Comments

  • gr4c1e
    gr4c1e Member Posts: 124

    Yikes! (you're right, theres always a big but) Here's hoping that clot will go away! Great news about the liver, though!

    I have my scans tomorrow and follow-up with MO on Friday. I'm hoping for some good news myself - personally I am a fan of the word "stable". Nothing fancy, just no new shenanigans, please!

  • denny10
    denny10 Member Posts: 421

    Hi gr4c1e, yes, stable is great as far as I am concerned too. I have a new adventure -injecting myself with blood thinner for the next 2 weeks , then being assessed whether I can change to tablets,[ please! ]. I am having an extra week off Trodelvy as that's probably what's causing the blood problem. Always good and bad news!

    Hope your scans go smoothly and your results are ''stable''.


  • gr4c1e
    gr4c1e Member Posts: 124

    OH MY, denny10! Have you ever had to inject yourself before? I'm squeamish when other people do it. Sending good vibes that the blood thinner works it's magic and that nasty clot takes a hike!

    I got my wish. The radiologist used the word "stable" a lot, and even threw in the word "regression" concerning the biggest tumor in my lung - so I'm staying on Trodelvy. My liver has been on the "watch list", due to some interesting polka dots, since March with no changes, so that's good. Ribs # 7 and # 12 remain "chronically fractured" but they've been that way for two years, so no surprises there. The only interesting tidbit was that the pneumonitis that the MO thought was caused by Trodelvy, was misdiagnosed on my 6/15 scans as ground glass nodules and potentially MBC, back when I was still on Abraxane, which was failing and showing progression in all three tumors in my right lung. After two months of Prednisone - the nodules diasappeared and have since been rediagnosed as pneumonitis and are no longer visible on my new scans. (not cancer) AND - turns out, Trodelvy was not to blame, so even better news.

    I have been going for SBRT on my brain tumor since Friday of last week. I'm having three sessions, yesterday was #2 and this Wednesday is #3. So far, no side effects from the radiation except for a bit of fatigue. Then we reassess in 6 to 8 weeks. (MRI)

    Sometimes it feels like metastatic breast cancer is a full time job!SickTired

    Think of you. Hang in there. I will if you will!ThumbsUp

  • denny10
    denny10 Member Posts: 421

    gr4c1e, happy dancing for you, in the circumstances we are in it doesn't get much better. Regression, a word rarely used in connection with MBC. The marks on your lungs being rediagnosed as pneumonitis and dissappearing is great. I hope SBRT hasn't been to hard for you.

    I used to be a blood donor , pre cancer and had to constantly look to the ceiling as I couldn't stand seeing needles in my or others arms, even with numerous blood tests for cancer treatment I could not look. Then covid happened and we were constantly unexpectedly being shown people having vaccinations on TV news and I began to be desensitized. Now I am injecting myself! I get the needle in place and then look away as I plunge it in my skin. The rest is relatively easy. At least another week of injections as I still havent been sent an appointment to anti coagulant clinic. Yes, cancer is a full time job!

    I am with you.



  • denny10
    denny10 Member Posts: 421

    I have just had my last self inflicted injection . I had a telephone consultation with the anti coagulant [clot ] clinic yesterday and now have tablets to take twice a day for 6 months. I have set an alarm on my phone as they have to be 12 hours apart and I know I will forget. Appointment with my oncologist on Monday, fingers crossed I don't get any exciting news!!

    Enjoy the weekend whatever way you can.

  • gr4c1e
    gr4c1e Member Posts: 124

    Yay for the last self inflicted injection! You're my hero. Glad to hear that tablets are an option. I do the same for any meds I have to take more than once a day - set the alarm on my phone with the drug name and dose - or I'll forget both!

    Brain Cyberknife sessions were completed last Wednesday. I had no real side effects. Just some fatigue the day after, but totally mangeable. The nurses and technicians present for each session said the same thing: "big tumor, big side effects, little tumor, little side effects" and fortunately for me, I fell into the little tumor category.

    It was fascinating to watch how delicately and with such precsion that robot arm moved around my head. I felt like I was in some sort of sci-fi movie! Didn't feel a thing, before, during or after. Follow-up MRI is scheduled October 26th to see if the skidmark is gone. Fingers crossed!

    The pneumonitis seems to be healing, so I had my last Cyberknife on Wednesday and my next Trodelvy infusion on Friday. I'm happy that my MO is giving the Trodelvy a fair shot. I was worried that the pneumonitis + the brain tumor were going to side-line things for a while - but nope - we're staying the course.

    Wishing you good luck on Monday (today) hoping for some good news!

  • denny10
    denny10 Member Posts: 421

    Hi gr4c1e, glad to hear the cyber knife did not have too many bad side effects and pneumonitis is healing. Fingers crossed the cyber knife zapped everything in its path.

    I saw my oncologist and he said my tumours have a mixed response; liver, breast and lungs good, other bits not so good. He suggested 3 more infusions of Trodelvy before another set of scans. He wants me to stay on Trodelvy as long as I can, while I am getting a mostly positive outcome. We discussed Enhurtu as the next step, when necessary.

    Staying the course with you :)

  • gr4c1e
    gr4c1e Member Posts: 124

    denny10, my MO said the same. We're staying on Trodelvy as long as possible, next phase Enhertu. Word on the street (eaves dropping in the infusion room) is that Enhertu also has similar pre-med protocol before the infusion.

    That said, let's hope we're hanging out on these message boards for a long time!

    I'm also keeping my eyes peeled for an upcoming clinical trial for ERX-41, a synthesized molecule that has been effective against breast cancer in mice. Let's hope it does the same in humans! Clinical trials are supposed to start in the first quarter of 2023. https://news.utdallas.edu/health-medicine/new-molecule-cancer-cell-killer-2022/

    In the meantime, looks like we're both on the Trodelvy Train for a while! Nerdy

  • denny10
    denny10 Member Posts: 421

    I am still on the Trodelvy train. I had an eventful day yesterday. I went to hospital for blood test ready for chemo on Thursday. My port would not drawback, so they had to go for a vein in my right hand. In the afternoon I went and had a covid booster. I got home and fell over in the bathroom. I landed on my right arm and bumped my head. As I am taking blood thinners I knew I had to go to the hospital emergency department to check I didn't have a brain bleed. The emergency nurse was not port trained , so it was 2 attempts to draw blood from my right arm [or wait for a doctor.] It was a busy night, I got home 6 hours later, CT scan, ECG and blood results showing nothing seriously wrong; bumps and bruises and feeling an like an idiot .I havent fallen in years , but start on blood thinners and over I go. Duvet day today. My daughter is coming next week and I am hoping to take the week off, instead of having chemo when she is here.

    I hope everyone else is doing better than me.x

  • gr4c1e
    gr4c1e Member Posts: 124

    OMG, denny10! Sounds like a heck of a day! This is the longest I've had a port and occasionally it gets sticky. That's when I get reassigned to what I call the "flippy chair". It tilts all the way back and raises my feet above my head. I'm definitely dizzy after that experience! Even without blood thinners! I hope your duvet day was recuperative and restful.

    Unfortunately, I too had a moment on infusion day last week. I thought I felt fine, and for the most part, I did. On my way to my front door, I got a sudden introduction to the concrete walkway. Lucky for me, I was also carrying groceries and they broke my fall. Nice bruise on my knee and a scab, but otherwise okay, just embarassed. My swan dive into the sidewalk was probably captured on at least 3 Ring cameras!

    I'm due for my brain MRI next week, post cyberknife surgeries and then CT & bone scans 11/16. My MO is giving me and extra week around Thanksgiving. They have a pretty tight scheduling window around holidays, so I just threw it out there - "Hey, what if I skip a week and we start up again the first week of December?" and she went for it! ASK and ye shall receive, denny10!

    Enjoy your time with your daughter!

  • denny10
    denny10 Member Posts: 421

    gr4c1e, thanks for telling me about the tipping chair. I don't think they have one at my hospital, but I am going to suggest that we try lying down on a bed with my legs above my body!!

    When I went for chemo last week, the nurses were not happy how my wrist looked; still swollen and painful. Another x-ray later, I was diagnosed with a fracture in my hand , hanate bone and one in my arm , radius ,just under my thumb. I now have a fabric splint and will be going to the 'hand clinic' tomorrow. Hoping time is the only treatment necessary.

    Sorry to hear about your fall. It is so embarassing isnt it? Nobody saw me, but I felt such a fool. I hope your bruising and scab heal quickly. Did your groceries survive?

    I hope your MRI shows you the cyberknife has done its' job. I will be chatting with the oncologist on Monday, so I am expecting to arrange scans in November too. Enjoy planning your Thanksgiving celebrations.

  • denny10
    denny10 Member Posts: 421

    gr4c1e, Thank you, I had a blood test booked today and the nurse managed to get blood from my port. Huurah! There wasn't a flippy chair, but we used an adjustable bed to raise my legs. I am under threat of having to have a new port fitted , which I don't want, so I am very grateful for your help. X

  • gr4c1e
    gr4c1e Member Posts: 124

    Glad to hear the leg elevation worked, denny10! How's the hand fracture? I hope you're feeling and healing well. As for my groceries, mostly vegetables, no cans so I had a fairly soft landing, except for my knee, of course! All the veggies survived to be eaten at a later date.

    Tomorrow is my brain MRI so I'm a little anxious, but mostly hopeful. My neuro consult is this Friday and I'm hoping for some good news.

    I do have to report that since the pneumonitis cleared, the Trodlevy infusions are actually going well. I'm super tired post infusion, which I attribute to all the premeds, but I'm bouncing back the next day. My MO said it got easier as time goes on for most, and I have to say, she was right.

  • denny10
    denny10 Member Posts: 421

    Hi gr4c1e, my wrist is healing and movement is gradually improving , thanks. I have been advised to continue wearing the splint until I feel I no longer need it. I was not too impressed with the hand specialist I saw . I was signed off without physio or follow up !!

    Chemo tomorrow, so plenty of time for you to be in my thoughts as you get your MRI. I hope to hear some positive news from you at the weekend.x

  • denny10
    denny10 Member Posts: 421

    Hi gr4c1e, I wont be regularly posting on this thread again. MRI and CT scan on Friday showed growth of the tumour in my liver. There was no new cancer and all the other bits; lung, breast etc. were stable. I need my liver, so my doctor is asking the insurance company to agree to Enhurtu. I am having a 2 week break from treatment before starting again [with a whole new set of side effects to learn about- the big D and sickness !?!.] if the insurance company agrees.

    I had hoped to hear you had good news, but your silence suggests not, please let me be wrong. Thinking of you. x

  • gr4c1e
    gr4c1e Member Posts: 124

    I'm hanging in there. I had my follow-up with the Neuro and she is pleased that my brain tumor has shrunk to about the size of an m&m now. Again, the next steps are to continue with Trodelvy and watch the brain tumor. I have my folow-up brain MRI in January 2023 to see which way this goes.

    Sorry to hear about your liver mets, but glad to hear Enhertu is an option. (and I hear the side effects are similar to Trodelvy, including premeds and all that) I have my quarterly CT and bone scan on Wednesday this week. I'm feeling well, so I'm optimistic I'll get to stay on Trodelvy for a while. My next line is Enhertu also, so worst case I make the switch too!

    Keeping you in my thoughts! Hang in there!

  • denny10
    denny10 Member Posts: 421

    hi gr4c1e, glad to hear from you. A shrinking brain tumour has to be great news. I hope your next scans are as positive and you can stay on Trodelvy for a lot longer. I think that you are feeling well is a good sign.

    Without chemo, I am feeling a lot more like my old 'normal' self; cramming in as many visits to friends and family as I can. Also trying to get ahead of Christmas preparations [ I am British, no Thanksgiving here] so I can relax and ride out side effects of any new treatment at home.

    I am going to the cinema on Wednesday , but I will be sending positive thoughts your way.



  • denny10
    denny10 Member Posts: 421

    I found out yesterday I have funding for Enhertu. After a discussion with my Oncologist we have decided to wait another couple of weeks and start on 29th of December so i can enjoy the holiday with my family.

    To everyone still on trodlevy I hope you continue to get a good response.

  • mikainsb
    mikainsb Member Posts: 34

    Hi All.

    I will be entering the Trodelvy club soon.

    Here is my question: Does everyone get steroids?

    I was reading the literature and it is not clear if this is an "always." I tend to refuse meds until I know I need them. I did Havelen without zofran, cause I never needed it.

    My experience with steroids is my house gets very clean between 1am and 4am. :)

    Thanks.



  • denny10
    denny10 Member Posts: 421

    mikainsb, I have just stopped getting trodelvy. I remember getting a steroid infusion before the Trodelvy and then being given 3 days of steroid tablets to take at home. I was not getting sick, so every round the medical team dropped the dosage. I still had the steroid as a pre med and finally had a 2 mg tablet for 3 days. My house wasn't as clean, but I did sleep on that doasge:)

  • mikainsb
    mikainsb Member Posts: 34

    Thanks Denny10. Good luck on Enhertu.


    I am three days out from my first Trodelvy, and I am blown away by how weak I feel.

    I thought this was a well tolerated treatment.


    How have other people faired? Is there a cadence? Maybe day three and ten always sucks, but the rest are ok?

    This is my sixth chemo. I would closer compare this to Adriamycen than anything else. Maybe I am just getting weak.


    No bueno.


    thanks

  • gr4c1e
    gr4c1e Member Posts: 124

    mikainsb, I have been on Trodelvy since July 2022. In my experience, it got better by the third cycle. These days I get tired on infusion day but I bounce back the next day. I take 4mg of Decadron twice a day for three days post infusion so that helps. I was also warned by my MO before starting that it might be hard at first, but by cycle three I'd be tolerating it much better. I'm glad I listened to her and stuck with it! On my last scans the biggest tumor in my lung actually shrunk by 6mm and the rest of my mets shenanigans are staying stable.

    I am also still working fulltime.

    So, IMO, this is definititely a tolerable treatment.

    And, yes my first Trodelvy infusion was like getting hit by a bus! I felt like I was walking around in lead pajamas! I really thought my MO might be nuts when she suggested I keep going! I'm glad I listened to her.

    I hope you start feeling better soon.

  • mikainsb
    mikainsb Member Posts: 34

    Thanks so much Gr4c1e. I am glad to hear you are working full time and your lead PJs comment was so right on. I felt like my body was encased in cement.

    I am better this morning and don’t have any doubts about going forward. I am seven years metastatic. If it works, I stay on it and work on managing side effects


    Your comment that it was more tolerable as you went further was definitely a relief.

    Thanks!

  • mikainsb
    mikainsb Member Posts: 34

    How long has everyone been on Trodelvy?


    After my first infusion I had grade 4 neutropenia. Luckily I didn’t get sick, but that is an instant dose reduction. That was probably why I had such a tough time. The initial dose was too high for me.


    Now, I am five months in. It’s not my favorite treatment but I am still working full time and traveling a lot. My tumor markers are still declining.


    How long are you guys on Trodelvy?

  • gr4c1e
    gr4c1e Member Posts: 124


    mikainsb - I've been on Trodelvy for a year so far. My CT was disappointing last week. Showed progression in my right lung, but my MO wants to stay on Trodelvy till September. So about three more months and a new CT. Fingers crossed. I have three tumors in my right lung and two remained stable while one showed progression, my bone mets are stable and my brain mets - also stable, so hopefully I can stay on longer.

  • nikkiqh
    nikkiqh Member Posts: 26

    Hi I started Trodelvy on 8/29 so far hasn't felt any SE. Isn't that strange? My 2nd infusion will be on 9/7 which is the 10th day of the cycle. Do you all stick to the 1th and 8th day routine strictly?

  • jsniffs
    jsniffs Member Posts: 136

    @nikkiqh - The first few days for me were okay because of the pre-meds, but then it felt like a hangover for a few days that first dose. I was only on for 2 cycles (4 doses), but half the weeks were good and half were kind of draining. I think over time it is supposed to get better. I did not stick strictly to the day 1/8 cycle because of holidays and travel. I don't think a couple of days difference here and there matters too much.

  • nikkiqh
    nikkiqh Member Posts: 26

    @ jsniffs You are on my heart. I pray for your NIH trial and good positive energy everyday.

  • jsniffs
    jsniffs Member Posts: 136

    @nikkiqh - Sending you love and lots of positive energy as well!

  • moderators
    moderators Posts: 8,744
    edited October 2023

    Hi All,

    Gilead Sciences, Inc. is developing a new patient education initiative and is seeking individuals who are currently being treated with TRODELVY, and may be interested in sharing their experiences with other individuals.

    Here is their desired criteria:

    • Diagnosed with metastatic triple-negative breast cancer or HR+/HER2- metastatic breast cancer
    • You are currently taking TRODELVY
    • Your interested in sharing your story about living with metastatic triple-negative breast cancer or HR+/HER2- mBC and experience taking TRODELVY
    • You speak English or are multilingual

    If you fit the criteria, you can call Gilead or email them using the below information.

    Thanks, on their behalf!

                            Call: 888-237-9758

                            Email: Elizabeth@mypatientstory.com

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