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Topic: Sacituzumab Govitecan (Trodelvy)

Forum: Triple-Negative Breast Cancer —

Share with others who have ER-/PR-/HER2- breast cancer.

Posted on: May 21, 2020 11:30AM

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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Apr 21, 2021 09:43AM Grannax2 wrote:

Thanks DoubleBloom. I will read all the posts.

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Apr 22, 2021 12:54PM moth wrote:

The ASCENT trial finally published. (we've had prelim reports & some data but this is the official)

https://www.nejm.org/doi/full/10.1056/NEJMoa202848...

just look at this waterfall plot!

Image

& MEDIAN OS = 12 mos!

Image

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- (IHC) Surgery 12/12/2017 Lumpectomy: Left; Lymph node removal: Sentinel Chemotherapy 2/14/2018 AC + T (Taxol) Radiation Therapy 8/13/2018 Whole-breast: Breast Dx 2/2020, IDC, 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) Dx 12/9/2020, IDC, Right, Stage IV, metastasized to lungs, Grade 3, PR-, HER2- (IHC) Radiation Therapy 12/9/2020 External: Chest wall Dx 1/28/2021, IDC, Left, Stage IV, metastasized to bone Radiation Therapy 3/3/2021 External: Bone
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Apr 27, 2021 09:40AM S3K5 wrote:

moth, the results from ASCENT trial looks promising. Are you on this drug? If so, what's your experience on this so far?



S3K5 Dx 3/24/2008, IDC, Right, 3cm, Stage IIIA, Grade 2, 5/10 nodes, ER+/PR+, HER2- (FISH) Chemotherapy 4/15/2008 AC + T (Taxol) Targeted Therapy 5/30/2013 Ibrance (palbociclib) Chemotherapy 2/1/2019 Xeloda (capecitabine) Chemotherapy 4/5/2019 Taxol (paclitaxel) Chemotherapy 10/30/2019 CMF Targeted Therapy 7/7/2020 Piqray (alpelisib) Dx 10/19/2020, IDC, Right, Stage IV, metastasized to bone/liver, ER-/PR-, HER2- (IHC) Chemotherapy 12/10/2020 Doxil (doxorubicin) Hormonal Therapy Faslodex (fulvestrant) Hormonal Therapy Femara (letrozole) Chemotherapy Gemzar (gemcitabine)
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Apr 27, 2021 10:04AM S3K5 wrote:

I started on Trodvely last Thursday (25th April). Hope to see some positive results without my QOL going downhill or any type of reactions. I have been on low dose of Prednisone since previously I had severe skin reaction and vasculitis with Adriamycin.

I have read about everyone's experience with this drug - thanks for posting this information. On Facebook's "Trodelvy for Stage 3 and Stage 4" forum, someone had mentioned that they did not have severe side effects with the first or second infusion since it was a slow one (3 hrs and 2 hrs) but got severe stomach cramps with the third infusion since it was done over one hour. Has anyone seen this? Should I ask my MO to order a slow infusion in future? I didn't have any stomach pain with my first (3 hour) infusion.

Please continue to post any new information you may have in dealing with the side effects. This thread seems to be very slow! Not much participation.

S3K5 Dx 3/24/2008, IDC, Right, 3cm, Stage IIIA, Grade 2, 5/10 nodes, ER+/PR+, HER2- (FISH) Chemotherapy 4/15/2008 AC + T (Taxol) Targeted Therapy 5/30/2013 Ibrance (palbociclib) Chemotherapy 2/1/2019 Xeloda (capecitabine) Chemotherapy 4/5/2019 Taxol (paclitaxel) Chemotherapy 10/30/2019 CMF Targeted Therapy 7/7/2020 Piqray (alpelisib) Dx 10/19/2020, IDC, Right, Stage IV, metastasized to bone/liver, ER-/PR-, HER2- (IHC) Chemotherapy 12/10/2020 Doxil (doxorubicin) Hormonal Therapy Faslodex (fulvestrant) Hormonal Therapy Femara (letrozole) Chemotherapy Gemzar (gemcitabine)
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Apr 27, 2021 10:23AM moth wrote:

S3K5, no I'm not on Trodelvy atm. It's not even approved in Canada yet. We're hoping it will be soon. I'm still on first line atezolizumab + taxane right now.

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- (IHC) Surgery 12/12/2017 Lumpectomy: Left; Lymph node removal: Sentinel Chemotherapy 2/14/2018 AC + T (Taxol) Radiation Therapy 8/13/2018 Whole-breast: Breast Dx 2/2020, IDC, 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) Dx 12/9/2020, IDC, Right, Stage IV, metastasized to lungs, Grade 3, PR-, HER2- (IHC) Radiation Therapy 12/9/2020 External: Chest wall Dx 1/28/2021, IDC, Left, Stage IV, metastasized to bone Radiation Therapy 3/3/2021 External: Bone
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Apr 27, 2021 04:44PM thrivingmama wrote:

S3K5 - I was in trodelvy at 50% dose June 2020-Jan 2021. I usually did it over an 1.75 hours. The two times I sped I did 90 minutes I experienced more nausea. Maybe coincidence, maybe not.

I am back on trodelvy at 75% now. I am actually doing better with side effects at 75% dose compared to 50. I’ve been doing it over 2 hours, not sure if that’s what’s making the difference.

I did intentionally run it slower because I had seen some posts on Facebook saying that it helped. Figure I can always experiment and tey

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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Apr 30, 2021 03:44PM - edited Apr 30, 2021 03:45PM by jc73

Hi everyone, my mom just started her 3rd cycle of trodelvy today. She has small mets in both lungs. She had a CT scan yesterday that showed stable. For those of you who had regression, how many cycles did you have before you saw the regression? I'm thankful for stable, but still hoping for regression on the next scan.

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Apr 30, 2021 04:25PM DoubleBloom wrote:

jc73 I was on Trodelvy from mid september to the end of december last year. My scans showed NED so my onc discontinued all me chemos (including my intrathecal). Unfortunately four months later I had three new tumors in my brain. I had to go through gamma knife radiation and was restarted on Trodelvy as well as my intrathecal chemo. I just had my second dose on WEdnesday. I'll have a follow up MRI of my brain in another month to check for new tumors.


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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Apr 30, 2021 06:06PM Wanderingneedle wrote:

jc73, I had 3 full cycles before my first scan which should showed regression. We lowered the dose and my next scan after 4 more cycles showed stability.

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- (IHC) 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- (IHC) 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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Apr 30, 2021 06:10PM Wanderingneedle wrote:

I just had a 2 week break for radiation and my cancer thought it was vacation time and decided to throw a party. I see the doctor on Tuesday and hopefully continue Trodelvy and it gets everything back under control.

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- (IHC) 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- (IHC) 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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Apr 30, 2021 09:07PM jc73 wrote:

DoubleBloom, that’s pretty amazing that you reached NED. I will be praying for you to get back there again. Trodelvy worked so well the first time I’m sure it will kick it in the butt again!

Wanderingneedle, may I ask what the reasoning was for lowering the dose? Side effects? I’ll be praying that trodelvy gets your mets back under control after your short break.

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May 1, 2021 10:02AM Wanderingneedle wrote:

jc73, yes the reduction was for side effects. I mainly had problems with diarrhea and fatigue and the reduction helped a lot. I had 2 blood transfusions and that also helped with the fatigue. Since going back to full dose the side effects have not been as difficult and I’m hoping to continue. I’ve had a lot of treatments, some as ER+, and I’m hoping there are some more out there that will work for a while.

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- (IHC) 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- (IHC) 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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May 1, 2021 11:48AM - edited May 1, 2021 11:49AM by DoubleBloom

I receive IV Emend as a premed which helps incredibly with the nausea. It is also available as a tri-pack which you can take at home.

Have any of you had mouth sores? My gums are raw and inflamed. My doc px a steroid mouthwash which seems to be helping.

Hope you all are having a nice weekend.

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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May 1, 2021 05:05PM S3K5 wrote:

Doublebloom, I had requested for Emend with my second treatment since I had bad nausea last time. The nurse told me that they usually do not prescribe this but gave me script for Zofran. Today (day 3) the nausea is really bad.

Wish I had Emend since it had worked for me 10 years ago!

S3K5 Dx 3/24/2008, IDC, Right, 3cm, Stage IIIA, Grade 2, 5/10 nodes, ER+/PR+, HER2- (FISH) Chemotherapy 4/15/2008 AC + T (Taxol) Targeted Therapy 5/30/2013 Ibrance (palbociclib) Chemotherapy 2/1/2019 Xeloda (capecitabine) Chemotherapy 4/5/2019 Taxol (paclitaxel) Chemotherapy 10/30/2019 CMF Targeted Therapy 7/7/2020 Piqray (alpelisib) Dx 10/19/2020, IDC, Right, Stage IV, metastasized to bone/liver, ER-/PR-, HER2- (IHC) Chemotherapy 12/10/2020 Doxil (doxorubicin) Hormonal Therapy Faslodex (fulvestrant) Hormonal Therapy Femara (letrozole) Chemotherapy Gemzar (gemcitabine)
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May 4, 2021 08:01AM DoubleBloom wrote:

SKR5 Would it help to ask your doctor (instead of the nurse) while explaining how zofran doesn't help and you are suffering? Can you request Emend?

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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May 12, 2021 04:08PM S3K5 wrote:

DoubleBloom, my MO finally sent the prescription for Emend to the pharmacy. Hopefully I should get by today evening for tomorrow's treatment.

How often do you all get the PET scan or MRI? After how many cycles did you know that Trodelvy was working or not? I completed one cycle and will start my 2nd one tomorrow (3rd infusion). I have too many liver mets and extensive bone mets too. Hoping this drug works!

S3K5 Dx 3/24/2008, IDC, Right, 3cm, Stage IIIA, Grade 2, 5/10 nodes, ER+/PR+, HER2- (FISH) Chemotherapy 4/15/2008 AC + T (Taxol) Targeted Therapy 5/30/2013 Ibrance (palbociclib) Chemotherapy 2/1/2019 Xeloda (capecitabine) Chemotherapy 4/5/2019 Taxol (paclitaxel) Chemotherapy 10/30/2019 CMF Targeted Therapy 7/7/2020 Piqray (alpelisib) Dx 10/19/2020, IDC, Right, Stage IV, metastasized to bone/liver, ER-/PR-, HER2- (IHC) Chemotherapy 12/10/2020 Doxil (doxorubicin) Hormonal Therapy Faslodex (fulvestrant) Hormonal Therapy Femara (letrozole) Chemotherapy Gemzar (gemcitabine)
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May 12, 2021 04:51PM theresa45 wrote:

S3K5 - Emend helped me a lot with the nausea when I was on Enhertu and I continue to use it as a premed infusion with Trodelvy. I'm having my second infusion of my 3rd cycle of Trodelvy (so tomorrow will be my 6th infusion). My first scan on Trodelvy will be at the end of next week, so after 3 full cycles (~10 weeks because I took one extra week off between cycle 1 and cycle 2 to get my second Moderna vaccine). I hope that Trodelvy is effective for all of us!!!!

Dx 4/20/2009, IDC, <1cm, Stage I, Grade 2, 0/4 nodes, ER+/PR+, HER2-
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May 13, 2021 08:44AM DoubleBloom wrote:

sk35

I'm happy that you advocated for yourself to get the Emend and I really hope it works well for you.

On average I have a PET twice a year and Brain/Spine MRI four times a year. I have an extra MRI this month as a six week follow up since I had gamma knife on my brain in April..

I had six doses of Trodelvy in the fall and clean scans (both Pet and MRIs) at the end of December. My recurrence occurred in April and I just had my 3rd Trodelvy treatment yesterday.

I only have mets in my brain and previously my spine (which is currently controlled leptomeningeal disease).

Hope this helps!

I'm praying for all of us.

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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May 13, 2021 08:46AM DoubleBloom wrote:

I find that Troodelvy makes my body tremble. Arms, legs, torso. Anyone else?

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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May 18, 2021 02:21PM S3K5 wrote:

DoubleBloom, Yes! After my third infusion, I noticed trembling in my hands, legs and torso.

I also started having neuropathy in my toes for which I have been prescribed Lyrica, I started this today.

Theresa, hope your scans show that Trodelvy has worked so far and you continue on this treatment, as long as it is tolerable for you.

Tomorrow I have a MRI scan ordered by the Radiation Oncologist to ensure the spine tumors are not anywhere close to the spinal cord.

S3K5 Dx 3/24/2008, IDC, Right, 3cm, Stage IIIA, Grade 2, 5/10 nodes, ER+/PR+, HER2- (FISH) Chemotherapy 4/15/2008 AC + T (Taxol) Targeted Therapy 5/30/2013 Ibrance (palbociclib) Chemotherapy 2/1/2019 Xeloda (capecitabine) Chemotherapy 4/5/2019 Taxol (paclitaxel) Chemotherapy 10/30/2019 CMF Targeted Therapy 7/7/2020 Piqray (alpelisib) Dx 10/19/2020, IDC, Right, Stage IV, metastasized to bone/liver, ER-/PR-, HER2- (IHC) Chemotherapy 12/10/2020 Doxil (doxorubicin) Hormonal Therapy Faslodex (fulvestrant) Hormonal Therapy Femara (letrozole) Chemotherapy Gemzar (gemcitabine)
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May 31, 2021 11:54AM theresa45 wrote:

Hi All,

Unfortunately my first CT scan after 3 cycles of Trodelvy showed progression in the liver and lungs, so I just switched to Halaven(aka eribulin). Prior to starting Trodelvy, I was on the DESTINY04 trial of Enhertu for HER2 low patients which worked for about a year. Enhertu and Trodelvy have different targets but deliver a similar chemo agent. So, I knew that there was a risk that it would nor work. A couple of hormone positive patients in my metastatic breast cancer group have a had significant and relatively long lasting responses to Trodelvy.

Wishing everyone the very best!

Theresa

Dx 4/20/2009, IDC, <1cm, Stage I, Grade 2, 0/4 nodes, ER+/PR+, HER2-
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May 31, 2021 01:38PM NorCalS wrote:

Theresa45,

So sorry to hear about the progression. I couldn’t tell from your profile whether you are still hormone positive or whether the cancer mutated to triple negative. (I’m very interested in Trodelvy because it may be something I will need in the future.

Dx 6/17/2019, IDC, Left, 6cm+, Stage IIIC, Grade 3, ER-/PR-, HER2- Chemotherapy 6/24/2019 AC + T (Taxol) Chemotherapy 4/6/2020 Xeloda (capecitabine) Radiation Therapy Whole-breast: Breast, Lymph nodes, Chest wall
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May 31, 2021 01:50PM DoubleBloom wrote:

Theresa45,

I'm saddened to hear that your three cycles didn't work. Wishing you the best with your new treatment plan.

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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Jun 1, 2021 04:40PM anornurse wrote:

I am not on trodelvy anymore. It stopped working for me. I am trying a different chemo, carboplatin and gemzar. It doesn’t mean trodelvy doesn’t work, just not me, good luck and keep the faith! Sharo

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Jun 2, 2021 02:22PM DoubleBloom wrote:

anornurse.

Sorry to hear that Trodelvy stopped working yet am happy that you have other options. There are so many effective drugs out there. How long were you on Trodelvy? Has your doc mentioned how long he / she wants you to stay on the new meds?


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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Jun 2, 2021 03:40PM anornurse wrote:

10 months for trodelvy. It worked until the last couple of months. I think we will wait for the first chest cat scan in a couple of months before he makes a decision. Good luck to you! Your right, there are so many drugs of choice, we are so lucky! Life isstill good! Sharon

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Jun 2, 2021 09:07PM AmyQ wrote:

I am new to this board. I'm on my fifth round of Trodelvy. It's dropped my tumor markers significantly. What's interesting is I too have noted hand trembling in both hands. I dismissed it to the tumor in my spine which received 10 rounds of radiation. Other than 1 week of diarrhea, I have had no other side-effects. Well, I guess I am wrong. The hand trembling appears to be a side-effect. Is there anything that can be done?

I have a PET/CT scan scheduled for mid-July. Thank you.

AmyQ

Dx 2/7/2013, IDC, 1cm, Stage IV, Grade 2, 2/3 nodes, mets, ER+/PR+, HER2- Chemotherapy 4/8/2013 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Hormonal Therapy 7/18/2013 Femara (letrozole) Radiation Therapy 11/24/2015 External: Bone Hormonal Therapy 1/9/2016 Faslodex (fulvestrant)
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Jun 3, 2021 09:32AM DoubleBloom wrote:

AmyQ, Welcome to the group. I have trembling in my hands, torso, and thighs. My husband can feel it when he gives me a hug. I haven't found any solution to this but will be seeing a neurologist in about a week to see if there are possible treatments. Will try to remember to keep you posted. I feel as though I have short term memory loss from all of the medications. I also get once monthly intrathecal topotecan for my brain tumors and to prevent another round of leptomeningeal disease.

Anornurse, Thanks for your answers. God's speed as you move forward.

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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Jun 3, 2021 04:59PM Elligtr wrote:

Hello everyone, I'm new to this topic and the forum in general, I've learned so much. I just came back from MO office and he says Trodelvy now--there are numerous liver tumors on my last CT after being stable. Good to know about the fact its a long infusion and to be proactive with the GI issues. I was otherwise for 6 months on Tecentriq/Abraxane. No major side effects although he said some people do have quite a few with the immunotherapy! So reason for writing now, is he is recommending Trodelvy and I'm worried about these neurological side effects I'm reading about and to be prepared for nausea. I know everyone is different, but I also have had WBR and they are still monitoring a few spots to see if active or just immunotherapy effect. Sad to see the T/Abr. combo go, it was tolerable and was keeping bones and lungs very stable. He says Trodelvy is a breakthrough drug and would be next for TNBC. However, I'm seeing that its not all for TNBC and not necessarily super long lasting, I thought I was at the end of the line here, I did ask about the Cisplatin and he said he would prefer Trodelvy and that the platinum agents are very tough on people, but it is a choice if I want to go that route too. It almost sounds like he was selling me Trodelvy but how long of a run do you get on this, previously he thought one could be on Tecentriq for a very long time. He would like a liver biopsy, but I decided to defer for now, sounds a bit painful and potential for lung puncture, of which I have had 2 already (lung collapse) when draining fluid for the Pleural effusion last year. I'm one of those tricky subtypes, where some biopsies have said ER +, but others so low that I'm practically TNBC, hence I qualified for the Tecentriq with a 5% PDL1 , I did not do well on the CDK (Verzenio) or Xeloda--lasted less than 4 or 5 months on these with painful feet and lots of diarrhea. I guess there's a chance of finding HER 2 in having a biopsy although I doubt after so many tests, FISH included. What other options have you heard about? In Best birds guide, there's all kinds of radiation type options for the liver but he said blanket "no" to all of those.

I'm sorry to hear about the tremors, I would think the brain treatments would have something to do with that, but seems all these chemo drugs have some sort of nerve damage, particularly the Taxanes, which Abraxane is one of those and prone to neuropathy. Seeing a good neurologist probably a great idea. I recently found out there is also a type of doctor "NeuroOncologist" that deals with potential treatments for brain mets and related neurological issues, which I was surprised that he mentioned Avastin as an option now used in other cancer's with brain mets--it would be part of the infusion with the regular chemo. Thank you all again, prayers to all.

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Jun 3, 2021 11:42PM AmyQ wrote:

I had a brain MRI today and had great news. The tumor (small) is completely gone and there's no new tumors. I had one round of radiation, Gamma-knife I think which worked. Trodelvy, I'm told crosses the blood brain barrier, which is too, great news.

Amy Q

Dx 2/7/2013, IDC, 1cm, Stage IV, Grade 2, 2/3 nodes, mets, ER+/PR+, HER2- Chemotherapy 4/8/2013 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Hormonal Therapy 7/18/2013 Femara (letrozole) Radiation Therapy 11/24/2015 External: Bone Hormonal Therapy 1/9/2016 Faslodex (fulvestrant)

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