Feedback on Trodelvy

[FHgirl]

Hello to all

This is my first time of posting to this forum - i have recently joined.

I met with my oncologist today following a recent CT scan and she has changed my chemo from EC to Trodelvy. I have mets in my neck lymph glands, lungs, bones and liver. The scan showed the lymph glands, bones and liver are stable but there is 'a little bit' of progression in the lung nodules. Hence why she has decided to change me on to Trodelvy.

I was just wondering if anyone who is on it, has any feedback to share with regard to side effects and also how their cancer responded to the Trodelvy. Here in England, my understanding is that NICE have not licensed it for use in the NHS due to cost, However we are lucky to have private insurance which I'm hoping will agree to fund treatment.

I was diagnosed with secondary TNBC back in October 2021 which started in the neck lymph glands. My first chemo was capecitabine but the disease progressed rapidly to the lungs and liver, I was changed to Gemcarbo but the cancer continued to grow and they also found spots on the spine. Then EC for 3 cycles and now hopefully starting Trodelvy next week.

Thanks in advance.

x

[Bettybuckets]

Hi FHgirl, I am like you.. found MBC in my neck lymph node first and recently they were bulging! Got 2 c/m big and I almost got radiation to it and still may. But trying Verzenio. I was about to have first PET scan to see if 8 weeks on V was working but I had a major fall. Postponed scan for 2 weeks to let inflammation not interfere with the scan. I have been on EC in distant past. That is tough therapy! I am going to look up the drug you mentioned but don’t know it. Next up for me will be xeloda ( capecitabine) I hope this next drug works for you as it is all such a worry!

[FHgirl in reply to Bettybuckets]

Hi Bettybuckets

Thanks for replying. My oncologist hasnt offered radiotherapy to any of the mets. Not sure why - maybe because i had radiotherapy when i first had cancer 15 years ago.

I hope you're ok after your fall.

Capecitabine for me was very tolerable (is that a word?!) - i didnt feel rough on it - but it just did nothing for my cancer and i think even the oncologist was very surprised. i hope if you need to go on it, you will have better success.

Good luck with your PET scan when it comes.

[Bettybuckets in reply to FHgirl]

Wow no one has chimed in about your new drug. So we will want to hear how it is for you. Boy I hate this neck lymph and worry it will spread everywhere. But I also worry that radiation will cook my neck and leave me worse off. So here I sit paralyzed. The onc like having it as is so that they can feel if a treatment is working. It was 2 cm and bulging… has settled down to half on Verzenio

[FHgirl in reply to Bettybuckets]

is yours contained to one lymph node? Mine also are (i have several) bulging. One has a very strange shape from when they took a biopsy. i hate mine too because they are so visible. I had an online meeting with work this morning and although it is cold in the UK, i wound a big scarf around my neck to hide them. That is great that it has shrunk on the Verzenio! one of the benefits to having it visible is you can see whether the treatment is indeed working.

[Ntash01]

Hi FHgirl

Can’t advise as I’ve not had experience with Troldevy other than signing petitions to get it approved on the NHS. I do hope your private medical insurance pulls through for you soon so treatment can begin asap! This waiting game messes with your mind in addition to the rest of the crapola we have deal with!

Tc and do let us know if you get it (IF/when your up to it :-))

N

[FHgirl in reply to Ntash01]

Thanks Ntash01 Its strange isnt it that even though chemo can be tough, we're begging them to give it to us!

Hopefully the insurance will approve it and i can start ASAP.

I'll let you know how i get on - even the nurse who flushed my PICC line yesterday said she didnt know anything about Trodelvy and would need to look it up if i had any questions.

Hope treatment is going well for you.

[Contrarielle]

Hi, I don't know anything about it (will look it up tho) but hope you are funded and hope it works brilliantly. Good luck!

[FHgirl in reply to Contrarielle]

Thanks Contrarielle

[Iwasborntodothis]

My doc just mentioned this drug yesterday as one of the next in line after Taxol. Will follow this thread. Thanks for mentioning it.