Going on Trodelvy - any experiences/tips?

[LDR1]

Hi all, looks like my next step will be Trodelvy starting later this month. I've seen posts from a few people on here who've been on it -- I'm interested in hearing any updates from those who have experience with this drug - especially on its efficacy in shrinking / stabilizing your cancer and the various side effects. Thanks!😊🙏

[13plus]

I don’t have any experience of that drug but I’ve just spent the last couple of weeks hashing out whether or not to try to get in the trial ASCENT-07, which is a randomized trial to get either Trodelvy or a standard chemo (EG, Xeloda). I decided to just go on Xeloda but Trodelvy sounds very promising

So I am curious about 2 things if you are able to get Trodelvy without being in a trial. Are you ER+? And did you have just one chemo line since your mets dx, or have you had other chemos? I never managed to get that info regarding eligibility for Trodelvy.

[LDR1 in reply to 13plus]

Hi 13plus , I’m in the US and am able to access Trodelvy as a monotherapy based on the eligibility guidelines for the drug (described at link below) which is that I’ve been through at least 2 systemic treatments plus hormonal treatment. I’m hopeful it will be effective, fingers crossed. Re your next steps, I hope Xeloda works well for you (see all the tips/info on this page re managing hand/foot effects) and if needed you may have Trodelvy as another option later …

breastcancer.org/treatment/...

[Best521]

Wishing you a good long run on Trodelvy. My tumors have shrunk 25% on Trodelvy. Trodelvy has been more effective for me than Ibrance, Letrozole, Fulvestrant and Verzenio. The start was rough, Nausea, Diarrhea, Chemo Rash, Allergic Reaction, Hair Loss, Fatigue. We lowered the dose and extended the Infusion time to three hours then down to two hours. The side effects are much more manageable: Nausea disappeared, Benadryl has been replaced with Claritin reducing fatigue from infusion, Allergy managed with steroids at infusion, Rash and diarrhea managed with Clindamycin and Immodium. This last cycle I have not needed either Clindamycin or Immodium to manage flareups. I am on my 10th cycle.

I drink lots of water, exercise, follow a low in saturated fat, high fiber diet with lots of vegetables, fruits and Whole Foods. I also do a 12 hour intermittent fast. I surround myself with loving supportive people and stay clear of toxic situations, negative people and fools.

IV Treatment has not stopped my ability to enjoy life and spend time with family and friends. I flew across the USA this past November to celebrate Thanksgiving with Family.

Good luck and I hope things go very well for you. 😊👍

[Maraki in reply to Best521]

How are your Tumor markers?

[Best521 in reply to Maraki]

The overall Tumor Marker trend is down, however they did bounce up and then down initially. My oncologist relies more on scans, labs and self reported general well being. They watch TMs directionally for big changes. They don’t get concerned with small blips up and down. I watch the TMs more than they do ☺️

My tumors themselves have shrunk 25% overall, although the last scan end of January was stable.

[Iwasborntodothis]

I agree with most of the feedback from Best521 but they pre-med me with a bunch of things to avoid the diarrhea - emend, Aloxi,....I think I have a screen shot in a post. I had already lost my hair on Taxol so I forgot to mention that because after two years without hair you forget. You will get increased light/heat/sun sensitivity, dry skin, and little red bumps from time to time on this med too. My infusion time is 90 minutes - I had more side effects when it was reduced to an hour.

Doc told me the first few rounds are bad because the drug works so quickly and effectively. He was actually pretty worried about me because I was in a bad place with my liver when I started last May...it was swollen and painful and my blood tests - ALT and ??? were off the charts bad for liver damage. They had me hang out at infusion for a long time the first time.

Good news is all of my numbers are now normal - CEA included. Just the CA15 still out of normal range but has still dropped dramatically. Changed docs this week so I will have a PET scan this month to "see" how things are going.

And as for avoiding negative people and fools - I'm all behind that thought!

[MBorne1]

hi there.

So far have had 1 full cycle of trodelvy so I’m relatively new at it. The side effects are manageable. But they change daily for me. I noticed that the worst of it is fatigue. This can be reduced with exercise and diet changes made through the day. Going to Ask about keeping my infusions back at 2 full hours because after 2nd infusion I had some morning diarrhea. I have opted off of the steroids post treatment because I can’t sit still and have a feeling I could move the entire world. I’m already losing my hair in chunks after the 2nd dose. Kind of sad because this will be the 3rd time I’ve had to lose my hair to chemo. It’s heartbreaking but it’s not going to be a for me to not take a drug.

[Iwasborntodothis in reply to MBorne1]

Sorry about the hair - I had always been so vain about mine. Very humbling.

I agree with fatigue, I have to force myself up and to go do things. I give myself permission to sleep all day the one day of the second week. I'm on my "week off" now and I am eating and running errands and feeling pretty good.

[MBorne1]

I was speaking with a friend of mine who’s been on trodelvy for 2.5 years at an NED status. She said something very deep about hair. “No hair or no life.” Kind of got me thinking that it’s a hard time nevertheless, but definitely something I’ve put into my mind.

[LDR1 in reply to MBorne1]

Wow, did Trodelvy get her to NED status? I’m curious how extensive her mets were when she started it …

[MBorne1]

Yes. Trodelvy got her to NED. She had liver, brain and lung mets. She is doing really well too. Says side effects are manageable. I also want to add that I know more people who are at the same timepoint who did not have extensive mets and they are on it at 3 yrs NED. I am on it currently and I only have one active lymph node at start. had SBRT to zap it before I started so hoping for good results like the rest of us. Praying!

[LDR1 in reply to MBorne1]

Wow, that is really encouraging to hear. Thank you for sharing that. Hoping for good results for both of us!! 🤞🏼🤞🏼🙏🏼🙏🏼

[MBorne1]

we all all going to be on this ride together. So I am finding this feed to be helpful while going through this. Please keep sharing and I will do the same. Xo

[Best521]

Trodelvy cleared up extensive bone and lung mets of an another women I know. She only has a few mets remaining after a year on Trodelvy. Hoping we all have long runs on Trodelvy and more ADCs will be there when we are ready for them. Once the side effects are controlled Trodelvy feels the same as Ibrance sans hair. All the cancer drugs have side effects.

[Best521]

Great article from the New York Times. Nine years and eight treatments later a women is doing extremely well on Trodelvy.

“until finally, in 2020, she started taking a medicine that for more than two glorious years has stopped her cancer from growing and given her a quality of life that’s very close to normal.”

nytimes.com/2023/06/16/opin...

Keep the faith we are getting closer to drugs that offer an excellent quality of life and cures. ❤️

[Iwasborntodothis in reply to Best521]

What a great article and it so accurately captures our journey. I'm on my 6th treatment and I am grateful that it is Trodelvy.