Anybody on Fulvestrant alone w/ no progression for 2 years plus like me?

[cancerjustgotreal]

I'm not complaining, I've been on Fulvestrant alone for 26 months w/out cancer spreading. [MBC in 9/ 2016, 2nd line after Ibrance & Exemestane gave me a pretty good run until 1st progression after 3+ years in 2020. ER+ PR+ HER2- (low)] Former onco wanted to immediately add Verzenio to it but I couldn't stomach idea of its side effects. I said I'm going to wait.

New & better onco agreed w/ me for 2 reasons: I'm in "1 percentile" having success w/ the hormone-only drug, & let's save the big hitters, Verzenio, etc for when I really need them.

Here's my question: I'm happy to stay w/ the current program but is this normal to go a lengthy spell on Fulvestrant & remain progression-free? Has anyone else had the same experience? No matter what drug, they all eventually stop working against the cancer cell monster. Am I overlooking anything that would lead me to add a 2nd drug now?

Cancerjustgotreal

[jersey-jazz]

I too am on Fulvestrant alone and am having a really good time on it. The numbers have gone way down to normal! I too am feeling "normal" for the first time since being diagnosed with MBC.

[love2golfwell]

That is awesome that you are doing well on Fulvestrant alone. I hope it continues to work for you and keep you progression free.

[Flavia100]

I am only on Faslodex. Is my regular oncologist and my mayo oncologist concur. I have a normal life at this point. I just hope it stays so far so good

[fancydog]

We are the lucky ones!!!! I have been on only it for almost 5 yrs and so thankful. I did have a single lymph node that we watched for over a yr finally become large enough that something had to be done, it was biopsied(had same HR+, HER2- receptors so was radiated) and I've had clear scans since. My Onc says we'll save the Ibrance in her hip pocket until it is really needed!!! Scans next month, hoping all is well.

[Likes]

Hi!

I have had good luck for two years. Faslodex cleared my lung tumor! Unfortunately now I am sick with diverticulitis and ongoing UTI ‘s! I’m hoping it is not the faslodex causing these problems.

I’m so glad you are doing well. Susie

[NPmary]

lt is 'not normal' Ccording to research statistics: progession free survival 6.5 months, overall survival 26.4 months per the CONFIRM TRIAL. So happy gor your good results and others who responded here. I just started fulvestant alone as second line treatment after progression in July, hoping for good results as well.

Thanks for sharing. 🌺❤🌺

[jersey-jazz in reply to NPmary]

What was your first line of treatment?

[NPmary in reply to jersey-jazz]

lbrance, Letrozole and Xgeva.

[jersey-jazz in reply to NPmary]

TDear NPMary--- Thank you for your quick response. I was just on Letrozole which was no friend of mine. I had bad side effects and no good results. The Fulvestrant seems to be working for me by itself with no side effects that I am aware of.

[NPmary in reply to jersey-jazz]

that is such good news. I agree the side effects of letrozole were much worse than this.

[mariootsi in reply to NPmary]

Letrozole was terrible.

[cpidacks]

I have been only on Fulvestrant as my first line of treatment since March of 2019. My onc wanted me to take Ibrance along with the Fulvestrant, but I have difficulty swallowing pills so she decided to try the Fulvestrant only. My scans have been stable with no signs of progression. I have a tumor in my liver. I was diagnosed with Stage 2 breast cancer in 1991. I have an MRI every 5 months and my onc said that if my scan in November is stable I will have an MRI every 6 months. Good luck to all of us in our journey.

[kkrouse]

I’m on Fulvestrant alone for almost 3 years. I was on Ibrance as well for 18 months and couldn’t tolerate it any longer. I have no issues with the injections, so I will continue until there’s progress on. Good luck!

[jersey-jazz]

Where did this "1 percentile'. come from? It is hard to reconcile with all of us who are on one cancer drug speaking out.

[kokopelli2017 in reply to jersey-jazz]

agreed. 1% can't possibly be right...can it? for me, not fulvestrant....but letrozole only for 5 years. and I am sure there are many others on this site on AI only?? in addition to fulvestrant only.....

[kearnan]

Wow. I wish that worked for me. I was on Verzenio and falsodex injections for three and a half years. I could not handle the 150 mg. of Verzenio, then she dropped it to 100 mg. of Verzenio and I stopped that after two weeks, and then she gave me the lowest dose of Verzenio at 50 mg. and that was what I was on for three and 1/2 years.

At that low dose, it worked fine. I had no issues at all, was not tired, and felt normal for the most part. I was upset and actually cried when it spread to my liver and I had to get off that line of treatment bc it was so easy for me to handle.

That is fantastic. Do not question why, just be happy. Plus, I did discover that different meds affect people differently. I could not handle the Ibrance bc the week off I could not even get out of bed. That was at the highest dose of 125 mg. of Ibrance. It was the start of my treatment and I was so sick on my week off so I only stayed on that for three months.

I had no idea and was clueless that I could have asked (or my onco should have known) to give me Ibrance at a much lower dose. I learned from this forum board to do so. The one thing I know though is that because one person has issues with one medication, does not mean that another person will have the same issues.

[8576]

Why not try it? It might be good for you.

Cheers, June S.

[PJBinMI]

I got over nine years from Fulvestrant as second line treatment after some progression on Letrozole. I have denovo bone mets, E+ P+ (initially, now P-) her2neu - lobular mbc, diagnosed in 3/2004 before meds like Ibrance, affinitor, etc were around. I got nearly 5 years from Letrozole. Also on bone meds, first Zometa, now Xgeva. Ibrance was added briefly in 2016 but damaged my lungs. Now I'm on third line Exemestane and have had a bit of progression but not enough to change meds over. We each have our own experience with this lousy cancer but having good results with a med is hopeful for many of us! I hope you'll become another long timer.