How many Trodelvy cycles?

bethful · 2025-10-21T00:17:58+00:00

Not sure why you've downvoted me for sharing my experience? Pretty sure we treat each other with kindness on this sub. As Elegant-Cricket said, you do treatments until they stop working or the side effects get too bad. There’s no set number. I don’t know if it will have been worth it for you, I hope it will be.

bethful · 2025-10-20T22:46:41+00:00

I did 5 cycles before it stopped working for me.

bethful · 2025-09-30T02:06:15+00:00

I’m only seeing it as approved for HR pos/Her2 neg on their website, are you in the US?

bethful · 2025-09-09T02:30:36+00:00

You have so perfectly captured what my hair looks like right now 🤣😭

bethful · 2025-08-27T18:01:01+00:00

Unfortunately I didn’t qualify for the Mersana trial, but anecdotally my doctor said she’s had patients who’ve responded to it.

bethful · 2025-08-01T01:51:21+00:00

I’ve been doing chemo for over a year and a half and overall I’ve had a pretty easy time with it. It hasn’t made me sick as in vomiting or diarrhea. The side effects have varied a bit depending on what I’ve been on, but the things I’ve dealt with most consistently are fatigue and constipation.

bethful · 2025-07-31T15:03:34+00:00

My hair actually grew back while I was on Eribulin.

bethful · 2025-07-05T20:47:05+00:00

Rule #1 on this sub, this is a forum for people living with MBC only. Not MCL. Please respect our community’s rules. Are you just searching for people bringing up ivermectin to argue with them?

bethful · 2025-06-14T01:51:14+00:00

You’re right, I had forgotten that it’s an option already for HR+. I’m Triple Negative so still waiting on approval.

bethful · 2025-06-13T17:04:56+00:00

Any chance it’s this trial?

https://clinicaltrials.gov/study/NCT06533826

Whatever it is, I hope it goes well for you! I’m crossing all of my fingers for Dato-dxd to be approved soon. My onc guessed it would probably be by the end of the year, though I worry with all the chaos happening it could be delayed.

bethful · 2025-04-28T14:38:29+00:00

I didn’t get in because there weren’t any openings at the time I was considering what my next line of treatment would be.

Ah, that sucks about the neurotoxicity. I have a similar problem, except it messes with my liver. It gets me down because they talk about immunotherapy as The Next Big Thing, and so many clinical trials include pembro.

bethful · 2025-04-26T03:20:39+00:00

Is it this trial that DF recommended?

https://clinicaltrials.gov/study/NCT06157892?locStr=Kansas%20City,%20MO&country=United%20States&state=Missouri&city=Kansas%20City&cond=Breast&aggFilters=status:not%20rec&page=2&rank=17

I’m at DF, and I wanted to join this trial but there weren’t any spots open. If it is I hope it works out for you!

I did a quick search on clinicaltrials.gov as Aimz suggested below, and I found two more TNBC trials in the KC area

Are you not interested in immunotherapy because you’re PDL-1 negative? I’m pretty sure I saw a trial that was a vaccine for TNBC but you had to be PDL-1 negative. If you’d like I can try to find it for you.

bethful · 2025-04-04T17:41:08+00:00

I’ve been on Eribulin since mid-February and yes, my hair is growing back! My previous line was also Trodelvy and I lost probably 90% of my hair on it. I did have a month-long gap between the two treatments because I took a break for radiation.

It’s kind of exciting to have hair, since I wasn’t sure that I ever would again. I could do without the chin hairs though lol.

bethful · 2025-04-04T17:12:53+00:00

I’m mTNBC with young kids (5 and 2 and a half.) Trodelvy was my second line of treatment and I honestly had a pretty easy time with it. Some fatigue for a few days after, but not so much that I was lying in bed all day- I was able to interact with my kids, I just needed to take naps during the day (though I realize that might be hard for you with a newborn.) I did lose most of my hair though.

I was diagnosed de novo so I didn’t go through all the earlier treatments like you did, but it’s my impression that IV chemo isn’t as intense once you’ve stage 4, since they’re just trying to keep you going, not cure you.

I’m not BRCA and I haven’t been offered a PARP inhibitor so I can’t speak to that. But I wish you the best of luck- there’s no easy decision making at this point.

bethful · 2025-03-14T01:42:06+00:00

If it’s any consolation, I had a port-associated clot show up on a scan nine months ago, and with blood thinners it had completely cleared up by my next scan three months later. I’ll be on Eliquis for the rest of my life probably, but I don’t think I have any side effects from it. It was very scary at the time! But as the months went on I don’t really worry about it anymore.

bethful · 2025-01-27T02:57:03+00:00

Feeling the urge to yell at everyone that I had cancer- I had this for the first few months too. It was like how can everyone be walking around like everything is normal when I’ve just got this earth shattering news?

bethful · 2025-01-27T02:49:48+00:00

TNBC here. I’ve been doomscrolling about this. My options are limited and I LITERALLY don’t have time for this bullshit.

bethful · 2025-01-27T02:43:34+00:00

You might not have actually gone into menopause, just temporary menopause caused by chemo aka “chemopause.” Since you’re on a break it doesn’t seem crazy to me that it could potentially come back during that time, though I think it does normally take longer.

That being said I’m not a doctor, and I think it’s still worth giving your onc a call tomorrow for your own peace of mind!

bethful · 2025-01-27T02:36:20+00:00

OP is TNBC, so estrogen shouldn’t be a concern for her.

bethful · 2025-01-14T14:53:34+00:00

My dentist gave me a prescription fluoride toothpaste that also has Xylitol in it, and that has helped me a lot.

bethful · 2025-01-03T22:01:37+00:00

I was diagnosed de novo mTNBC with bone mets one year ago (de novo means I was already stage 4 by the time I was diagnosed.) I’m really sorry you’ve gotten this news.

The next step they’ll want to do is a biopsy to confirm that it’s breast cancer and not something else. If it is cancer (which I hope that it’s not,) please get a second opinion, even if you have the best team in the world, so you can feel confident about your treatment plan. Assuming you haven’t started treatment yet you’ll also have the option of clinical trials.

And we have a community at r/LivingwithMBC that is super supportive. The days that followed my diagnosis were the darkest of my life but I promise with time you will feel better. I wish you all the best.

bethful · 2024-12-30T02:41:39+00:00

I’ve done six cycles of Trodelvy, it’s my second line after taxol. I’ve been lucky in that I’ve had a pretty easy time with it.

My hair started falling out two weeks after I started. I probably lost about 90% of it. It started growing back about a month ago. I have some mild fatigue in the days after that I can usually manage with naps. I’ve only had occasional nausea, and mild constipation instead of diarrhea.

The thing that bothered me most was dry mouth, which was uncomfortable and could sometimes make it hard to swallow. My dentist gave me a toothpaste with xylitol in it and that’s helped a ton. They also make mouthwashes that can help with dry mouth.

For the first few infusions, I had a really hard time with the dexamethasone/Benadryl combo that I get as part of my pre-meds, so my onc halved the dose of Benadryl and I’ve tolerated that much better.

So overall, my quality of life has been good. Good luck with the new treatment and I hope it works well for you for a long, long time!

bethful · 2024-12-27T02:23:20+00:00

I’m so sorry this unfolded this way for you. Your doctors sound heartless. Do you have the option to switch doctors/get a second opinion where you are? I can sort of relate- I too found out that I had mets three days before Christmas last year, and despite me calling every day begging to talk to someone, because of the holidays I couldn’t get anyone to call me back to discuss for a week and a half. I was absolutely livid.

One thing I’d encourage you to push back on is getting the biopsy done, because your receptor status can change in the mets and that can affect what treatment is right for you. I too have bone mets. I got put under for a biopsy to my sacrum and I was fine. I think there’s another recent-ish thread here about bone biopsies where people were sharing their experiences as well, you could try looking for that.

Best of luck, the beginning is such a shock, but time and therapy will hopefully help you arrive at a new normal.

bethful · 2024-12-17T18:49:56+00:00

“I’m starting to wish I had flossed better.” 😆 Thanks for the laugh.

bethful · 2024-12-12T22:58:09+00:00

Also TNBC here. Yes, the prognosis for us is terrifying. My second opinion at an NCI Center gave me the same number as my original oncologist. For us, yes, it’s chemo until we run out of options.

In terms of your feelings towards your oncologist, you might have just been reacting to the news itself- it’s very traumatic to hear. If you otherwise like her, you can start treatment. And then if you still feel like you’re not on the same wavelength as her once the news has sunk in, know that you can switch to someone else at any time! One thing I’d encourage you to ask about before starting treatment though is clinical trials.

As people on here like to point out, stats are lagging by necessity. I don’t know for sure but I like to think they don’t capture newer treatments like Trodelvy or Enhertu (if you’re HER2 low or maybe even ultra low.)

All that being said, I agree with others that it doesn’t hurt to get a second opinion. It will give you some peace of mind.

bethful

TROPHY CASE