Anyone taking the new drug for TNB called Trodelvy??

[MMMP]

Trodelvy

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Hi MMMP,

I'm not taking that treatment, and I don't have TNBC, but my sister does, dx metastatic 5.5 years ago, same time as I was, with ER+ MBC.

Through my sis, I know that immunotherapy (sp?) is relatively advanced for TNBC, which is great. Her doc, the head of clinical trials at Duke, tried to get my sis into an immunotherapy trial a year or so back...possibly this treatment or similar?....but her cancer lacked some trait that made this do-able (she said "I'm quadruple (or quintuple?) negative"?).

So I'm very glad that this appears to be an option for you...I've read good things about similar...Best of luck with it...

Lynn

[Waylon]

Hi, I have been on this drug for a year and half. I was in phase 3 of the trial. Are you taking it?

[MMMP in reply to Waylon]

OMG - yes I’ve been on it since May when it got approved early- doing well my 15-3 finally dropped over 500 points- and my CT scan showed improvement in my lymph nodes in my neck. My WBCs and neutrophils drop way low so I need the Neupogen a few days before treatment- going today for my treatment- get blood about every 6 weeks. I would love to hear how you are doing?

[Waylon in reply to MMMP]

Great to hear! I have been NED last 2 scans. Praise God! I have scans next week. I have had to lower my dose throughout the 1 1/2 yrs but I tolerate it well. The worst days are trt day and day after. I have bad taste in mouth and food just really isn’t appealing but I bounce back by day 3. I do Neulasta on body after day 8 each round for my counts. I’m very blessed. What have your side effects been?

[MMMP in reply to Waylon]

Yes the mouth taste- just not hungry but that passes too. I get fatigued but find it hard to sit- I just had to leave my job after 30 years- was on short term disability now got accepted to have long term. I worked in a hospital and it’s just not safe with all this COVID-19. Are you now being treated by your own oncologist? Or still in the study-?

[Waylon in reply to MMMP]

I’m off study! But protocol the same except scans. Which is a nice break. It’s been very doable which is a blessing!!

[MMMP in reply to Waylon]

Thanks for connecting with me- my treatment went well yesterday- I go every 2 weeks- every week x 2 than skip than treatment was too much for me. We did not lower dose. So blessed to have this new treatment plan.

[Waylon in reply to MMMP]

Glad to hear it went well. So you have trt once every two weeks? I go back to back weeks then skip a week, that was protocol for study.(not fun). But glad to know you could be adjusted to fit you😊

[MMMP in reply to Waylon]

Just wondering how long you need to be on this treatment?? Do you have any follow up research appointments. Oh yeah did you lose your hair????

[Waylon in reply to MMMP]

Sorry late reply. I lost hair right away!! I will be on it until it stops working. I see the dr. Every 3 weeks so always checking in. Hope this helps

[MMMP in reply to Waylon]

Yes thanks- same thing here- I’m my doctors only patient on this so we are just both learning- I will stay on it as well - since for me there is nothing else for me to try except really hard core drugs. Treatment for me this Thursday- having a 15-3 drawn - hope it drops way down. I feel good- just sick of having 👨‍🦲 -

[lynnhbtb]

Hi there. Are you still having good result from trodelvy? My Onc. and I are considering switching to it because of less side effects than what I'm currently on. It will depend on next scans in June. I hope you are continuing to have tumor reductions.

[MMMP in reply to lynnhbtb]

Only lasted one year!!! But thats pretty good. Now taking carboplatium and gemcitapine hope it gives me more time- now in liver and bladder!!

[lynnhbtb]

Oh man. I’m sorry. I’m on carboplatin and abraxane now. All the best to you.

[Gwennie123 in reply to lynnhbtb]

Are you still on carboplatin. I started 2 weeks ago. My hair started falling out 3 days ago and it’s 2/3s gone. Did you experience that? What were your side effects?Thanks

Gwen

[lynnhbtb in reply to Gwennie123]

Yes, on carbo. Have been since December. I’ve used the cold caps through three lines of treatment, and am using them now so no hair loss, on my head anyway. I get pretty tired and nauseous despite all the meds for it. Some neuropathy but not too bad.

[MMMP in reply to Gwennie123]

My hair was already gone from being on the Trodelvy. The carboplatin maker so tired and nauseous!!