Topic: Sacituzumab Govitecan (Trodelvy)

Forum: Triple-Negative Breast Cancer — Share with others who have ER-/PR-/HER2- breast cancer.

Posted on: May 21, 2020 12:30PM

Posted on: May 21, 2020 12:30PM

Erich wrote:

Hello everyone. I was wondering if anyone(s) could share any experiences they have had using sacituzumab govitecan (Trodelvy) either in a clinical trial or as recently approved by the FDA.

We are trying to determine if it's the best plan of action for my wife at this time. There are 2 key things we are trying to determine.


1) How bad are the side effects (I've read everything from "terrible" to "manageable")?

2) Has it helped with your brain metastases or other CNS metastases? This is a tough question, I know. There is next to zero clinical data on it so far. Just trying to get any anecdotal evidence I can at this point.


Thank you all for any information on this! :)



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Oct 10, 2020 01:39PM moth wrote:

BevJen, she's tnbc acc to 2019 dx :)

I take weekends off

Initial dx at 50. Seriously?? “Sometimes the future changes quickly and completely and we’re left with only the choice of what to do next." blog: Never Tell Me the Odds

Dx 12/2017, IDC, Left, 1cm, Stage IA, Grade 3, 0/5 nodes, ER-/PR-, HER2- Surgery 12/12/2017 Lumpectomy; Lumpectomy (Left); Lymph node removal Chemotherapy 2/14/2018 AC + T (Taxol) Radiation Therapy 8/13/2018 Whole breast: Breast Dx 2/2020, IDC, Left, Stage IV, metastasized to liver/lungs, Grade 3, ER-/PR-, HER2- Chemotherapy 3/18/2020 Taxol (paclitaxel) Immunotherapy 3/19/2020 Tecentriq (atezolizumab) Chemotherapy 11/26/2020 Abraxane (albumin-bound or nab-paclitaxel) Radiation Therapy 12/9/2020 External Hormonal Therapy 12/16/2020 Femara (letrozole) Radiation Therapy 3/3/2021 External Local Metastases 3/3/2021 Radiation therapy: Bone Targeted Therapy 1/1/2022 Trodelvy (sacituzumab govitecan-hziy) Chemotherapy 6/1/2022 Other
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Oct 11, 2020 11:33AM Wanderingneedle wrote:

BevJen, I was doing fine on Halaven, everything was shrinking, side effects tolerable, except the lymph nodes under my arm were larger. I had a biopsy done and it came back TNBC. The genomic testing showed PD-L1 at 2% which was enough to go forward with tecentriq. My lymph nodes got even larger and it really screwed up my thyroid. My TSH was out of control and it has taken since March to get it within normal limits. I also had radiation to to the lymph and it helped some but was only for pain.

Libby - Just trying to figure it all out and keep up with daily life. Dx 11/9/2017, IDC, Right, 6cm+, Stage IV, metastasized to bone, Grade 3, ER+/PR+, HER2-, Targeted Therapy 1/23/2018 Ibrance (palbociclib) Hormonal Therapy 1/23/2018 Femara (letrozole) Chemotherapy 9/14/2018 Abraxane (albumin-bound or nab-paclitaxel) Hormonal Therapy 2/11/2019 Faslodex (fulvestrant) Chemotherapy 2/12/2019 Doxil (doxorubicin) Chemotherapy 2/27/2019 Halaven (eribulin) Dx 11/6/2019, IDC, Right, Stage IV, Grade 3, ER-/PR-, HER2-, Chemotherapy 12/4/2019 Abraxane (albumin-bound or nab-paclitaxel) Immunotherapy 12/5/2019 Tecentriq (atezolizumab) Chemotherapy 3/17/2020 Ixempra (ixabepilone) Chemotherapy 3/17/2020 Xeloda (capecitabine) Chemotherapy 5/11/2020 Xeloda (capecitabine) Targeted Therapy 8/31/2020 Trodelvy (sacituzumab govitecan-hziy) Radiation Therapy 4/20/2021 External: Bone Chemotherapy 8/20/2021 Carboplatin (Paraplatin), Gemzar (gemcitabine)
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Oct 11, 2020 02:32PM - edited Oct 11, 2020 02:33PM by RegiLifeme

Dear all,

I am living in Belgium and wonder if it is possible to get Sacituzumab Govitecan (Trodelvy). There were some clinical trials but they are closed now. If necessary I can go abroad to buy it (for my sister who has TNBC).

best regards

Reginald

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Oct 12, 2020 03:55PM Hlafrance wrote:

Hi, I am new to this forum. I started with Trodelvy just recently. I only had two treatments. The side effects have been minor compared to all the other drugs I have used before, except for one. It is giving me a rash that is really uncomfortable, all over my trunk. The first time, it was mild, but the second time was much worst. Has anyone experienced that and have you had success in controlling the rash? I do want to continue on Trodelvy because it sounds so promising.

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Oct 23, 2020 02:40AM thrivingmama wrote:

Hi everyone. I just discovered this Trodelvy thread and wanted to say hi and write a quick note, then I'm off to get some sleep. I started Trodelvy in early June. I was not in good shape when I started... high liver labs, bili, etc. I developed ascites that required once a week draining from June through September. My liver was not in good shape. I'm happy to share that I am feeling so much better now. After 2 cycles of Trodelvy my scans showed that it was working. My second scan on Trodelvy showed a remarkable response, particularly in my liver, compared to before I started.

Because my liver was in such poor shape when I started Trodelvy, I started on a 50% dose. I am still on a 50% dose and seeing the great response. My ascites began dramatically improving in September and my energy, appetite, etc. is so much better. I am so thankful and grateful that Trodelvy is working for me and for so many others.

Jan '18: Diagnosed Stage IV w/ 2 liver mets. NED April-Oct. Stopped chemo. Jan '19: new liver mets + spread to bones. Restarted GemCarbo + Xgeva. Worked well for 6 months, then progressed. Currently on Eribulin, which is holding me stable Dx 12/2016, IDC: Tubular/IBC, Left, Stage IIIC, Grade 2, ER+/PR+, HER2- Chemotherapy 1/11/2017 AC + T (Taxol) Surgery 6/11/2017 Lymph node removal: Left, Sentinel, Underarm/Axillary; Mastectomy: Left; Reconstruction (left): DIEP flap Hormonal Therapy 7/15/2017 Faslodex (fulvestrant) Radiation Therapy 7/18/2017 Whole breast: Breast, Lymph nodes, Chest wall Targeted Therapy 9/14/2017 Ibrance (palbociclib) Hormonal Therapy 9/14/2017 Dx 1/2018, Stage IV, metastasized to liver, Grade 3, ER-/PR-, HER2- Chemotherapy 2/8/2018 Carboplatin (Paraplatin), Gemzar (gemcitabine) Dx 1/2019, IDC: Tubular, Stage IV, metastasized to bone/liver Chemotherapy Carboplatin (Paraplatin), Gemzar (gemcitabine)
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Oct 23, 2020 09:50AM anornurse wrote:

Congratulations, thrivingmama! You are doing great! We all love this drug! I have been on Trodelvy since 5/20. My first cat scan of the lungs was good! I can't wait for the second cat scan which is 2 doses away!

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Nov 6, 2020 08:48PM Wanderingneedle wrote:

Halfway through 4th cycle. Still having difficulty adjusting to the diarrhea. Trying a dose reduction after scan showed everything is shrinking. 🎉 This is the first thing to work since I was diagnosed triple negative about a year ago so my whole family is breathing a collective sigh of relief!

I hope everyone is doing well - this thread is a bit quiet so hopefully that’s a good thing!

Libby

Libby - Just trying to figure it all out and keep up with daily life. Dx 11/9/2017, IDC, Right, 6cm+, Stage IV, metastasized to bone, Grade 3, ER+/PR+, HER2-, Targeted Therapy 1/23/2018 Ibrance (palbociclib) Hormonal Therapy 1/23/2018 Femara (letrozole) Chemotherapy 9/14/2018 Abraxane (albumin-bound or nab-paclitaxel) Hormonal Therapy 2/11/2019 Faslodex (fulvestrant) Chemotherapy 2/12/2019 Doxil (doxorubicin) Chemotherapy 2/27/2019 Halaven (eribulin) Dx 11/6/2019, IDC, Right, Stage IV, Grade 3, ER-/PR-, HER2-, Chemotherapy 12/4/2019 Abraxane (albumin-bound or nab-paclitaxel) Immunotherapy 12/5/2019 Tecentriq (atezolizumab) Chemotherapy 3/17/2020 Ixempra (ixabepilone) Chemotherapy 3/17/2020 Xeloda (capecitabine) Chemotherapy 5/11/2020 Xeloda (capecitabine) Targeted Therapy 8/31/2020 Trodelvy (sacituzumab govitecan-hziy) Radiation Therapy 4/20/2021 External: Bone Chemotherapy 8/20/2021 Carboplatin (Paraplatin), Gemzar (gemcitabine)
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Nov 6, 2020 10:25PM anornurse wrote:

Libby, This is wonderful to hear! I’m so glad the trodelvy is working for you too! I hope the diarrhea gets better with the reduced dose! I have been lucky, my occasional diarrhea has been manageable with Imodium. My first scan also showed in shrinkage in the lung lesions. My second scan is in a few weeks and I think the news will be even better! Life is good and getting better for you and your family! Sharo

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Nov 25, 2020 06:01PM LibrarianPatty wrote:

As you can see, there aren't that many responses. This is likely due to the fact that not that many patients are taking this drug since it is so new--approved by the FDA in April of 2020. I have been on several chemos since my diagnosis four years ago and they all have their different side effects. For this one, it has been terrible diarrhea. Have your oncologist give you a prescription for anti-diarrhea meds. It can start up even more than a week beyond the infusion. OTC stuff does not work! Other than that, as I go along with the treatment, the fatigue has gotten worse. I think that's the case for most chemos I have been on. Side effects aside, I wouldn't change it because the med is working. When i found out I was metastatic to my brain, they found 40 or 50 lesions. My scan last month, after taking Trodelvy since June, shows significant reduction in the size of the lesions and reduction in the number of lesions. They could only count 15 this time. Know that I am also taking a low dose of a niraparib (PARP Inhibitor) so that might be helping the meds to cross the blood brain barrier. I also had 10 whole brain radiation sessions back in March and April before starting chemo again. Best of luck and would love to hear from all of you since there aren't that many patients on this drug to ask questions of--at least not at my oncologists office.

Dx 9/15/2016, Right, Stage IV, metastasized to brain/lungs, Grade 3, ER-/PR-, HER2- Chemotherapy 10/5/2016 Other
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Nov 25, 2020 10:51PM Wanderingneedle wrote:

The dose reduction and two look transfusions have my fatigue this last cycle. Diarrhea only during second week but doubling up on meds early on helped. Also BRAT diet but I sure get tired of rice and bread. I found I can eat oatmeal on this diet and it helps with the monotony. My skin has severely dried out and flakes off all over my legs and back. It doesn’t itch and hasn’t cracked, just flakes. I already have dry skin and use lotion daily but will be trying a new lotion and maybe applying at bedtime as well morning. Anyone else suffer from dry skin? I take daily steroids and it can cause the skin to thin out but it’s a small dose so I don’t know if it affects my skin. I hope these side effects level off and not continue to worsen. Anyone else see a leveling off of side effects?

Libby

Libby - Just trying to figure it all out and keep up with daily life. Dx 11/9/2017, IDC, Right, 6cm+, Stage IV, metastasized to bone, Grade 3, ER+/PR+, HER2-, Targeted Therapy 1/23/2018 Ibrance (palbociclib) Hormonal Therapy 1/23/2018 Femara (letrozole) Chemotherapy 9/14/2018 Abraxane (albumin-bound or nab-paclitaxel) Hormonal Therapy 2/11/2019 Faslodex (fulvestrant) Chemotherapy 2/12/2019 Doxil (doxorubicin) Chemotherapy 2/27/2019 Halaven (eribulin) Dx 11/6/2019, IDC, Right, Stage IV, Grade 3, ER-/PR-, HER2-, Chemotherapy 12/4/2019 Abraxane (albumin-bound or nab-paclitaxel) Immunotherapy 12/5/2019 Tecentriq (atezolizumab) Chemotherapy 3/17/2020 Ixempra (ixabepilone) Chemotherapy 3/17/2020 Xeloda (capecitabine) Chemotherapy 5/11/2020 Xeloda (capecitabine) Targeted Therapy 8/31/2020 Trodelvy (sacituzumab govitecan-hziy) Radiation Therapy 4/20/2021 External: Bone Chemotherapy 8/20/2021 Carboplatin (Paraplatin), Gemzar (gemcitabine)

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