I was doing so well on Ibrance and Faslodex, I thought I would be one of the lucky ones who stayed on it for five years without progression. After just two years, I developed a new bone met, and a small lesion in the hilem (?). My oncologist took me off Ibrance, then off Faslodex. The alternatives were chemo; Verzenio and something else; or a clinical trial. Since she felt the new lesions were small and slow growing, it was worth trying the clinical trial, since it would easier to take. It is a phase 1-2 trial of an oral medication that works like Faslodex, same mechanism.
I am skeptical about this, since 500mg of Faslodex stopped working, why would the oral version work? I have read that the oral version is absorbed better. I am sorry to be off Ibrance, since the combo was so effective.
Attended the conference on MBC. I am suddenly realizing I am not going to have an exceptionally good response, and the life expectancy numbers on average are not good. I generally, not always but often, feel well and have energy. Hard to believe I am dying. Well, not yet, but hard to believe sometimes that have a terminal illness.
So: does anything know about or had experience with this new oral fulvestrant? I know there are others that have been through Phase 3. This is a newer one. There is another arm that has the fulvestrant pill plus Ibrance. I am in the fulvestrant pill only branch, I guess because the oncologist thinks Ibrance failed. Is there any reason to hope this will work?
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TammyCross
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Hi so sorry your faslodex/ibrance stopped working. Next drug I was told would be verzenio. Thanks for sharing your thoughts on MBC. I too feel that way about having this disease Best regards Susie
Yes, Verzenio was next, but she thought because the progression in new spots, and avidity but not enlargement in one remaining old spot, was going so slowly, there is time to try an alternative.
Have you had genomic testing? Tumor genomic assays (or tests) analyze a sample of a cancer tumor to see how active certain genes are. The activity level of these genes affects the behavior of the cancer, including how likely it is to grow and spread. Genomic tests are used to help make decisions about what treatments would be beneficial.
Yes, all the genomic testing. Negative for any mutation (e,g., BRCA and many others). I learned at the conference, though, that one might need repeat testing of new spots. (I call them spots because I don't know what they are. Lymph nodes that are enlarged, not tumors.) That is, the way that the mbc develops resistance to previously effective treatment can be that the cancer tries something new. ER+HER2- is the most likely to be heterogeneous, and a completely different treatment might be needed. The new places can even be HR2+. Mine are way too small to biopsy at this point, and in a really tricky place.
I think not there yet. I understand new tumors may be a different type. These are too small to biopsy -- but I wonder about a blood biopsy. No reason to think it might be HER2+. So one step at a time;p try the oral SERD and see if it works, then....
Tammy, I am so sorry these medications stopped working for you. That must be frustrating especially if you are feeling good. I read an article recently from Dana Farber Institute about Ibrance resistance and how they found that if they took a patient off of Ibrance for 7 weeks and then gave it to them again it started working again. I don't know if you want to ask your doctor about this before you start a new treatment. Whatever you decide to do, I pray you will stay strong and get through this.
Hi Tammy, I am sorry to hear you had progression and were taken off your meds. Seek another opinion! My scan results often sound like some things are slightly worse but other spots slightly better. It sounds a bit like your doctor acted fast to take you off your meds? Mine likes the approach of using them as long as possible, even if there is a teeny bit of progression, especially if you’re like me and generally feel good . I also have concerns that you have been persuaded to go into this new trial vs your own decision of it being something you want to do. (does your doctor have a connection to this trial and recruiting for it? That would be my personal concern)
If you get a second opinion at a different place you will learn if there really aren’t more options for you out there before chemo.And ask consider asking doctor about getting Foundation One genetic analysis on any of your existing biopsies to help determine best the meds for you .
Try using other resources too, like CancerCare, where you should be able to call and talk to someone to help you think through with your decisions about your next steps , especially if you don’t have someone who can be like an advocate for you . The doctor shouldn’t be pushing you into something you don’t feel comfortable with doing.
I was offered the three or two options. I was inclined to go for the trial. My oncologist was, too. Another doctor saw me first, maybe a fellow. She said she would check with the oncologist to see if she had changed her mind about the trial. She had not. So -- I guess my discouragement and skepticism is showing.
For the trial, I had to get an ECG. Just got the results. Not good! Not terrible, but increased risk of dying from a heart attack. This is too much. I am trying to be on vacation, trying to have a good time in a glorious place, but troubles there, too. Shared with relatives and it is really problematic. They have a different concept of the place and, from my perspective, are ruining it and destroying my legacy and my mother's. So fought with one of their people yesterday. I am planning to plant memorial trees, one for my mother and one for me. There is already a tree for my father. The tree a friend planted for their husky is gone. (This is so typical.) When I plant something, their gardener takes it out. It is painful and she is hypersensitive. Why am I putting that on a plane with dying of cancer or heart disease??? This is funny, Chris. (I am really Chris.) Trying to have a good time but failing now and then. Sitting inside reading bad test results instead of kayaking is probably not helping.
I read here a post from a man named David, I think, that his wife is in a phase 3 clinical trial of an oral Faslodex that is supposed to be on the market this fall.
The one I will be on is in Phase 1. It sounds like there are different pharmaceuticals developing oral SERDS, and they are in different stages of development.
Hi Tammy. I’m sorry it didn’t work longer for you. We thought the same regimen (Ibrance and faslodex) was keeping my bone mets stable 2 years, till it was discovered progression to stomach and colon. I’ve been on Xeloda now since last October. Tumor markers have dropped significantly every month since.
Xeloda was rough in the beginning; they started me on a high dose. I’m now on a lower dose, one week on and one week off.
I hope soon you’ll find your next treatment that’ll work for you!
Hi Tammy, just wanted to update/clarify my wife's experience with her clinical trial. She has been on a Phase 2 clinical trial for Amcenestrant since last October and is continuing to do quite well. On this trial, they get multiple types of scans every other month, so pretty close monitoring. From what I have read and seen in presentations, and as you point out, there are now a number of Phase 1, 2 and 3 trials underway for a number of different oral SERDs. I don't know of a timeline for formal FDA approval, but most research I have seen about these trials is very positive, both in terms of efficacy and also quality of life. If you want more info, you can put "Oral SERD" or "Oral Faslodex" in the search box and you will see some of my past posts with links to various trials and presentations on the topic, as well as posts from others who are on similar compounds. (Note: Oral Faslodex is probably a misnomer, but more people on this site were probably familiar with that name in the past, rather than SERDs, which is the broader category for this type of med and is now becoming more well known than in the past.) Good luck with your next steps!Dave
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Oral Faslodex?
Taking Ibrance and Faslodex 
Ibrance stopped working, lots of pain in back 
When Ibrance stops working.
