Topic: Sacituzumab Govitecan (Trodelvy)

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

Posted on: May 21, 2020 09:30AM

Posted on: May 21, 2020 09:30AM

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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Nov 26, 2020 01:48AM moderators wrote:

LibrarianPatty and all the new members here, welcome to Breastcancer.org! If you go to the Search function of our main site and type in "Trodelvy" or "Sacituzumab" (without the quotes) as your search term, you'll see every time the word is mentioned in an article, and can then check it out and learn more on this drug.

We've found this among other articles, hope it helps!: Trodelvy Improves Outcomes for Previously Treated Metastatic Triple-Negative Breast Cancer

Best wishes and looking forward to hearing more from you soon!

The mods

To send a PM to the Mods: community.breastcancer.org/my/...
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Dec 11, 2020 10:25AM - edited Dec 11, 2020 11:25AM by DoubleBloom

A hearty hello to each of you and the Moderators. I joined after my 2017 diagnosis and initially participated however I've quiet after waffling between so many setbacks and trying to regroup during remissions.

In a nutshell, I was diagnosed in 2017 with TNBC and had my double mastectomy that year after 5 months of chemo. 2018 was full of radiation and complications (radiation pneumonitis) and multiple additional surgeries due to cellulitis. In January of 2019 a routine MRI of the brain revealed 7 lesions which had probably seeded earlier. They were all obliterated with gamma knife surgery. I was well until Oct of 2019 when I experienced significant saddle anesthesia and numbness and tingling down the back of my legs into my feet. I was diagnosed with leptomeningeal disease and the docs said I'd have three months to live without any treatment at all. So of course we started radiation which I had to my lumbar and thoracic spine. In Jan 2020 I had an Ommaya port placed in my brain and started with intrathecal Topotecan and systemic Tecentriq. I did well until August of 2020 when I had four new lesions in my brain.

I continue with the IT Topotecan every four weeks however my MO changed my systemic treatment to Trodelvy. It's been tough. I was started on the recommended dosing of day one and day eight of a 21 day cycle but after the first cycle I was hospitalized for severe neutropenia ( WBC was .4 and ANC was .2), as well as low grade fever (100.2) and a nasty hive like rash that went from the back of my knees all the way up my trunk to the back of my arms. It was itchy and painful. The upside is that it never came back with future doses. I have severe constipation the first week after treatment (fiber foods and miralax helps) followed by diarrhea the second week.

Because Trodelvy shows apparent promise for TNBC patients, my doc had my continue it but changed my dosing to every 14 days. That has worked out better though I still have side effects. I am tired, have a headache and weakness. My hands shake to the point where I could not feed myself soup without spilling. I have lost my hair and have dark blue nails. My skin is dry and seems darker in my knuckles and around my face and neck. It's all okay if this helps me to get back into remission. The first week after a dose is tough and I seem to bounce back with more energy the second week.



My next set of scans are on Dec 29 so we'll see if the drug has done its job. I'm optimistic that it will.



Wishing each of you success!



Dx 5/11/2017, IDC, Left, 3cm, Stage IIIA, Grade 3, 0/7 nodes, ER-/PR-, HER2- Chemotherapy 6/1/2017 AC + T (Taxol) Surgery 11/27/2017 Lymph node removal: Left, Underarm/Axillary; Mastectomy: Left, Right; Prophylactic mastectomy: Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Surgery 12/4/2017 Surgery 1/1/2018 Radiation Therapy 3/5/2018 Whole breast: Breast, Lymph nodes Surgery 8/31/2018 Reconstruction (right) Surgery 9/26/2018 Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Dx 1/31/2019, IDC, 3cm, Stage IV, metastasized to brain, Grade 3, 0/7 nodes, ER-/PR-, HER2- Radiation Therapy 2/7/2019 External: Brain Surgery 3/21/2019 Reconstruction (left): Fat grafting; Reconstruction (right): Fat grafting Dx 10/16/2019, IDC, 3cm, Stage IV, metastasized to other, Grade 3, 0/7 nodes, ER-/PR-, HER2- Dx 8/28/2020, IDC, 3cm, Stage IV, metastasized to brain, Grade 3, 0/7 nodes, ER-/PR-, HER2-
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Dec 11, 2020 11:07AM norcals wrote:

DoubleBloom,

Thank you for sharing your story and letting us know how Trodelvy is working out for you. Crossing my fingers that your scan on December 29 turn out clean.

Dx 6/17/2019, IDC, Left, 6cm+, Stage IIIC, Grade 3, ER-/PR-, HER2- Chemotherapy 6/23/2019 AC + T (Taxol) Chemotherapy 4/5/2020 Xeloda (capecitabine) Radiation Therapy Whole breast: Breast, Lymph nodes, Chest wall
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Dec 11, 2020 11:21AM DoubleBloom wrote:

@NorCalS, Thank you so much!

Dx 5/11/2017, IDC, Left, 3cm, Stage IIIA, Grade 3, 0/7 nodes, ER-/PR-, HER2- Chemotherapy 6/1/2017 AC + T (Taxol) Surgery 11/27/2017 Lymph node removal: Left, Underarm/Axillary; Mastectomy: Left, Right; Prophylactic mastectomy: Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Surgery 12/4/2017 Surgery 1/1/2018 Radiation Therapy 3/5/2018 Whole breast: Breast, Lymph nodes Surgery 8/31/2018 Reconstruction (right) Surgery 9/26/2018 Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Dx 1/31/2019, IDC, 3cm, Stage IV, metastasized to brain, Grade 3, 0/7 nodes, ER-/PR-, HER2- Radiation Therapy 2/7/2019 External: Brain Surgery 3/21/2019 Reconstruction (left): Fat grafting; Reconstruction (right): Fat grafting Dx 10/16/2019, IDC, 3cm, Stage IV, metastasized to other, Grade 3, 0/7 nodes, ER-/PR-, HER2- Dx 8/28/2020, IDC, 3cm, Stage IV, metastasized to brain, Grade 3, 0/7 nodes, ER-/PR-, HER2-
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Dec 11, 2020 01:17PM anornurse wrote:

Libby, Good luck to you. I believe so strongly in trodelvy, that I bought some stock in Gilead Science, who bought Immunomedics, who manufactures trodelvy. I don't have dry skin, but I did lose my hair. I am not a wig person, so I have quite a collection of hats. Bless you and keep us posted! Sharon

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Dec 11, 2020 01:24PM anornurse wrote:

Doublebloom, Nice name! Good luck on your scans! It sounds like you have been through alot! Keep looking forward! I really believe in trodelvy. My oncologist started me on it in the beginning of May, 2020. It's working! I can't wait for my next scan. I have metastatic tnbc in the brain, lungs, and spine. I had tnbc 9 years ago, chemo, surgery, then radiation. It came back last February. Life is good and trodelvy is even better! God bless you! Sharon

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Dec 12, 2020 07:58AM DoubleBloom wrote:

Thank you anornurse. I sincerely appreciate your encouragement. It helps me to get through the tougher days and to remember that I will get my energy back.

Dx 5/11/2017, IDC, Left, 3cm, Stage IIIA, Grade 3, 0/7 nodes, ER-/PR-, HER2- Chemotherapy 6/1/2017 AC + T (Taxol) Surgery 11/27/2017 Lymph node removal: Left, Underarm/Axillary; Mastectomy: Left, Right; Prophylactic mastectomy: Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Surgery 12/4/2017 Surgery 1/1/2018 Radiation Therapy 3/5/2018 Whole breast: Breast, Lymph nodes Surgery 8/31/2018 Reconstruction (right) Surgery 9/26/2018 Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Dx 1/31/2019, IDC, 3cm, Stage IV, metastasized to brain, Grade 3, 0/7 nodes, ER-/PR-, HER2- Radiation Therapy 2/7/2019 External: Brain Surgery 3/21/2019 Reconstruction (left): Fat grafting; Reconstruction (right): Fat grafting Dx 10/16/2019, IDC, 3cm, Stage IV, metastasized to other, Grade 3, 0/7 nodes, ER-/PR-, HER2- Dx 8/28/2020, IDC, 3cm, Stage IV, metastasized to brain, Grade 3, 0/7 nodes, ER-/PR-, HER2-
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Dec 19, 2020 08:03AM ahmet_23 wrote:

I'm also a son of TNBC mom.

Maybe,Trodelvy trails is being worked university hospitals in İstanbul(ÇAPA,Cerrahpaşa and etc)

Allah acil şifalar versin inşallah

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Dec 19, 2020 12:55PM anornurse wrote:

Dear Ahmet_23, I'm not sure if you are asking a question. If you are interested in Trodelvy, the company who manufactures it is called Immunomedics. The company was purchased by Gilead Science this last October. Immunomedics is an American company, it also has a European office. Look it up either company on the internet you will get more information. I hope this helps. The drug really works! Anornurse

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Jan 14, 2021 08:50AM DoubleBloom wrote:

My scans at the end of December showed no evidence of disease and my oncologists have taken me off of all chemo! I'm already feeling more energetic.

For those of you have been on Trodelvy and then taken off, how long have you been able to stay in remission?

thanks!

Dx 5/11/2017, IDC, Left, 3cm, Stage IIIA, Grade 3, 0/7 nodes, ER-/PR-, HER2- Chemotherapy 6/1/2017 AC + T (Taxol) Surgery 11/27/2017 Lymph node removal: Left, Underarm/Axillary; Mastectomy: Left, Right; Prophylactic mastectomy: Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Surgery 12/4/2017 Surgery 1/1/2018 Radiation Therapy 3/5/2018 Whole breast: Breast, Lymph nodes Surgery 8/31/2018 Reconstruction (right) Surgery 9/26/2018 Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Dx 1/31/2019, IDC, 3cm, Stage IV, metastasized to brain, Grade 3, 0/7 nodes, ER-/PR-, HER2- Radiation Therapy 2/7/2019 External: Brain Surgery 3/21/2019 Reconstruction (left): Fat grafting; Reconstruction (right): Fat grafting Dx 10/16/2019, IDC, 3cm, Stage IV, metastasized to other, Grade 3, 0/7 nodes, ER-/PR-, HER2- Dx 8/28/2020, IDC, 3cm, Stage IV, metastasized to brain, Grade 3, 0/7 nodes, ER-/PR-, HER2-

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