what’s next - fulvestrant failed

[Tm2373]

mom has been fighting mbc since March 2020 Er+, her-. Ibrance and exemestane until three months ago and then started fulvestrant 3 months which hasn’t worked. Pleural effusion back (1 liter which had to be drained) and lung mets grew. Bone mets stable. Has anyone had a similar treatment and success on the next line of treatment and what was it? Scared about what’s ahead.

thanks ladies. You are all an inspiration.

[Jessie55]

Hi. I will follow this as my sister is in similar position. Diagnosed Dec 2020, same first line treatment which worked wonderfully until progression showed on last scan. Wondering what next… we are in the uk - are you? X

[8576]

There are lots of treatments after this. Don't worry. I had similar progression. Bones stable but progression in the lungs. Talk to your nurse and doctor. They will tell you what to try next. I have found in my case, at least, though there is progression it doesn't always warrant a change of meds. It takes some medication time to work. And I don't know how easy it is but try to get a second opinion if you don't like the answers you are getting. I, thankfully, have an excellent second opinion doctor which I have consulted on several occasions. Also, do your own research or have someone do it for you. My youngest daughter is really good at this and I am currently on a medication that the doctor had not even mentioned. I am leery of IV chemo which is the next step. Haven't decided yet if I will go this route when it presents itself. In the meantime this drug, Verzenio, is working.

Cheers, June S.

[Tm2373 in reply to 8576]

I think I research too much. This board gives me great intel and first hand experiences are valued. I’m glad your daughter does the research. Agree re IV chemo. Mom has terrible neuropathy from her first treatment 9 years ago and don’t want that, or anything, to get worse.

[Debbigbang]

Hi

I had couple of spots on my vertebrae and one 3 cm, at breast cancer diagnosis, on my liver which kept growing. I am on letrozole still. I have tried ibrance and fulvestrant. The ibrance healed the bone leisions but liver kept growing to 8 cm. My onocologyst kept me on letrozole and added xeloda. Last scan my liver shrunk 2 cm. Organs are trickier than bone.

Deb ❤🙏

[Tm2373 in reply to Debbigbang]

Totally right the organs are so tricky. Great the lesion shrunk. Hope that continues for many months.

[Hopeful4Cure]

Hello, I was on ibrance and fasoldex for just about a year and a half and they stopped working after mets in 2019. Partial response and then failed as of dec. 2021. DId a lot of testing for a clinical trial and a few months went by and I had no treatment. I did not do the trial because I did not want to take something that had no concrete evidence and did not want to risk my tumor markers rising. They did anoter test of my old tissue from 2016 to make sure that I was indeed hr+, her2 neg, plus an allergin test prior to taking xeloda, which I asked my doc about because I did the research and decided on a chemo pill, because I did not want fart around. Won't know if it is working until end of month. Hope that helps you to help your mother.

[Tm2373 in reply to Hopeful4Cure]

Thanks for sharing. It’s so hard waiting for the next treatment, as you say fart around. I hope xeloda works for you.

[Hopeful4Cure]

Thank you for your response. I hope so too and I also hope something helps your mom. There is a list somewhere, I forget who I got it from, but it has a list of all the current treatments for mbc/bc and is helpful for different types too, which I used to decide to take xeloda. Here it is, well, not the list, but the person and more info- Anne Loeser, the founder of the Patient Centered Dosing Initiative and a patient with metastatic breast cancer. Hope it is helpful. I am sure if others read this, they too may have the url to the list.

[PJBinMI]

I'm a long timer with MBC, over 18 years. Early on I was told that though we usually get scans at three months on a new to us med,that isn't always long enough to know whether it will work or not! Ibrance can damage the lungs--it did mine, permanent damage after just a few cycles back in 2016. I'm a huge fan of second opinions, especially from an onc who treats only breast cancer. (Best places in US are Comprehensive Cancer Centers, listed on the website of the National Cancer Institute) My mother died of lung cancer almost 40 years ago and I know how stressful it can be to have our mom's lives threatened. Just being there for her is wonderful! Sending love to both of you

[Tm2373 in reply to PJBinMI]

18 years - that’s terrific. I am sure you have seen so much thru that time. I spoke to the Dr today at Sloan and the lung tumors grew in size so it seems while the bones were stable it wasn’t working in the lungs. We have an appt in a week to discuss treatment options and possible trials.

[8576]

I am a huge fan of second opinions also. Can't stress enough that no one doctor knows the answers. And being careful about where you go for the second opinion is important.Hope you get the meds you are looking for. Mind you I have also discovered that changing meds to quickly if the increment is small.

Cheers, June S.