I have a question..I am currently on fulvestrant/letrozole. I had been on ibrance/letrozole. I see some are on the variety of those like ibrance/fulvestrant. I find all very interesting. As I struggled with liver mets that keeps growing tiny bit at a time. Just trying to find the correct combo. I guess that is the "fun" with this disease, finding out what works. So Icould end up with ibrance/fulvestrant combo who knows. I can see now when they say they have arsenal of treatment, not lying! Of course we would all rather a cure to all this and the variety of side effect we can live with. This is what we have.
The other question is has everybody here had chemo? I was diagnosed with breast cancer, then month later mbc. I was days to chemo, but they took me off to do these treatments. My onocologyst is keeping the chemo as we work on a treatment to stabilize the liver. Has anybody else gone through the same thing?
Thank you
Deb 🙏❤
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Debbigbang
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Hi Deb! I like and agree with what you say re: so many tools in the toolkit, combined in different ways...Definitely cause for hope/optimism!
I did chemo, back in the day, i.e. 12 years ago when I was dx'd stage IIa/IIIb...mets dx came 5 years later...
Everyone has a different experience, but for me, it wasn't nearly as bad as I feared. I did the ACT combo, which involved 3 months of A+C (something like Adriamycin + Cytoxine, or similar (def got the cytoxin wrong...), and one of those two is supposed be especially hard, called the "red devil"...Then 3 months of Taxol, which really was a walk in the park compared to the first part...
...But none of it was over the top terrible...I continued to work full time, handle home/family/etc...which was exhausting and, looking back, I probably should have taken a leave (was concerned for my career! Which now leaves me scratching my head!!).
So if you're looking into the future, wondering what IV chemo will be like, I'd not worry too, too much? I see many women in this community who report that Taxol - which seems to be a common next step after the oral meds - is *easier* than some of the orals...
Thank you so much for answering Lynn !! My onocologyst is still going to work with this endocrine therapy, but that liver is kicking and fighting lol. I don't think "she" was doing well with my over drinking to excess, maybe just still angry at me at me, taking her time in healing LOL. I don't drink any alchol now.
As for work, if it goes that route of chemo, at 59, I am no work hero, those climbing ladder days are over. Retiring at 65 and won't look back lol. I will definitely take the time I need...because as I travel this journey, I had not been good to myself in past yrs. Everybody was more important than me to look after. I know now that I am seriously important. I know as women we do tend to put ourselves on the back burner until everybody else is good.
Hey! Just a comment re: your doc's stance re: alcohol consumption...From everything I've read (and, believe me, I've done some deep dives on this topic!), the jury is definitely out!! I think it's similar to some puritanical beliefs/biases/shaming re: various lifestyle choices (e.g. weight, smoking, drinking...)...But, from what I've read, there is nothing that clearly relates drinking to decreased longevity in MBC patients (but I'll take another look...my last deep dive was a couple of years ago, I still have my notes here somewhere...).
Also, my Aunt had very serious liver disease...and (anecdote warning, not a study!!!) she has had a truly remarkable recovery which she (and her doc, off the record) attribute to her juicing radishes (or is it beets? radishes, I think) and drinking *lots* of that! Just FYI...
p.s. I get the part about looking after everyone but yourself! So many people, as you note - especially women (proven by studies), make the same mistake....
Amen Lynn, I know I do. Trying to do my best to help a dear elderly freind who's been diagnosed with end stage emphysema, permanently on Oxygen, housebond tied to a generator, almost no muscle. Hospice nurses visit but he needs me on the weekends. AND I'm having to work part time. Yeah I have some other medical problems that need attending to, but I always feel like I don't have the time & sometimes I don't have the energy.
I was diagnosed with MBC, de novo, in June 2021 and my first treatment plan was IV chemo FEC combo. I got all three on the same day, every 3 weeks, totaling 6 treatments. It went so well I asked for 2 more before starting the slow and steady daily meds of kisqali and letrozole. Plus zelodronic acid every 3 months for my bones. I started this regime in January.
I’m not sure that the extra 2 treatments had a better impact than starting the targeted treatment, but at the time, I felt like an extra couple of jolts of high test couldn’t hurt.
The cancer was first noticed in my liver, and then through further tests, found the primary as a 1cm lump in my breast, plus 3 lymph nodes, 2 spots on my spine and 1 on a rib
It’s amazing how many treatments we read about just within this group alone.
This afternoon, the Canadian Breast Cancer Network is hosting a webinar on ‘Advancements in Care for MBC’ so I’m curious to see what’s presented.
Unfortunately I didn’t get a chance to participate in the webinar but the link to a recorded version will be available this week on the Canadian Breast Cancer Network site
The three largest liver Mets (all under 2cm at diagnosis) had shrunk by about half after the IV chemo treatments. The reports didn’t mention the number of smaller lesions that were scattered throughout my liver.
I had a CT scan yesterday and I’ll get the report at my oncologist appointment on the 19th. This is my first since starting the daily oral meds.
I’ve had to miss two weeks of kisqali since starting in January because of my WBC so im not expecting great results yet but I’m hoping at least for stabilization in comparison to my previous scan. Anything better than that will be a bonus.
Fulvestrant and Letrozole sounds odd to me. Aren't they both in the same category, whereas Ibrance is targeted? I was on Ibrance + Fulvestrant for first two years of mbc and they worked incredibly well until they didn't, but I didn't have liver mets and I think there is a different approach for liver mets, if unresponsive.
I agree with the above--fulvestrant with letrozole sounds odd. Both are E-blockers--but they do work in different ways. Not a combo commonly used in the US. Almost all E-blockers are paired with one of the CDK 4,6 inhibitors. However, the E-blockers are the heavy lifters--so maybe that will help!!?? Best to you. Kay
Breast cancer is a crazy cancer. The end of the month I will see how things are doing. I know that there are so many different combinations. Could be a liver thing. I will find out.
I agree with Tammy. I was switched to Fulvestrant and Ibrance after being on letrozole and by mistake kept taking the letrozole. ( I was under the impression they were adding fulvestrant and Ibrance, not switching). Anyway, when they realized I was still taking letrozole, they said it served the same function as fulvestrant and I did not need both. Me, being a little paranoid, started researching whether I caused myself harm and actually found a study where they said the two together, fulvestrant and letrozole, showed benefit to some people. I didn’t read too much more as I was really just looking for some verification I didn’t do something “bad”. Good news is, they are trying everything all the time and it benefits us. YAY! I was diagnosed MBC de novo and had taxol for three months. I think some oncs start with chemo and some do not.
I had chemo with my first tumour but that was many years ago. My MBC came on many years later. I've been on Ibrance and letrozole for about 18 months and am doing well so far. I hope you get the right treatments for you and manage to stabilise your condition.x
Hello, I was in a similar situation when lump was first discovered in my Mammogram and before the first round of scans results and blood tests came back, my oncologist discussed me having surgery followed by radiotherapy and chemotherapy also. Once the results were back days later and MBC was confirmed the whole plan changed. No surgery now…or possibly ever as I understand…and chemo may be an option later down the road if /when other options fail or the cancer mutates.I’m also on two hormone blocker meds (Zoladex and Femara) together with Ibrance and monthly Zometa. In my case this is because I was not yet fully menopausal at the time of diagnosis. The Zoladex is in the form of an implant that is injected under the skin in my stomach area near to where our ovaries are…each month the side is alternated. This is to inhibit estrogen production by the ovaries. The other inhibitor (Femara) is a tablet that blocks the absorption / inhibits product of estrogen from other parts of the body… and is usually prescribed alone to those that are already menopausal. Femara is another name for Letrozole….depending where and by whom it’s produced.
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