Share with others who have ER-/PR-/HER2- breast cancer.
Posted on: May 21, 2020 10:30AM
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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Posts 91 - 109 (109 total)
Apr 22, 2021 11:54AM moth wrote:
The ASCENT trial finally published. (we've had prelim reports & some data but this is the official)
just look at this waterfall plot!
& MEDIAN OS = 12 mos!
Apr 27, 2021 08:40AM 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?
Apr 27, 2021 09:04AM 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.
Apr 27, 2021 09:23AM 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.
Apr 27, 2021 03:44PM 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
Apr 30, 2021 02:44PM - edited Apr 30, 2021 02:45PM 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.
Apr 30, 2021 03:25PM 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.
Apr 30, 2021 05:06PM 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.
Apr 30, 2021 05:10PM 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.
Apr 30, 2021 08:07PM 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.
May 1, 2021 09:02AM 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.
May 1, 2021 10:48AM - edited May 1, 2021 10:49AM 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.
May 1, 2021 04:05PM 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!
May 4, 2021 07:01AM 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?
May 12, 2021 03:08PM 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!
May 12, 2021 03:51PM 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!!!!
May 13, 2021 07:44AM DoubleBloom wrote:
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.
May 13, 2021 07:46AM DoubleBloom wrote:
I find that Troodelvy makes my body tremble. Arms, legs, torso. Anyone else?