I have bone mets. Am Est+ and have cycled through Arimidex, Tamoxifen, Faslodex shots, and am now on Xeloda for almost 2 years. My Oncologist wants to put me on Ibrance with Letrozole next, but a consulting Oncologist says NO! She says that Ibrance is strictly used as 1st or 2nd line drugs in the treatment of breast cancer. She says for me to have Ibrance I would need to be in a clinical trial as the drug hasn't been tested in women who've had 4 previous drugs. Who's right?
Has anyone been on Ibrance after being on 3-4 other drugs or chemo? Thanks! Kats3
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Kats3
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I have been on 2 AIs (Arimidex & Aromasin) and 4 chemos (2 worked twice and two didn't work & I had 3 chemos prior to metastasis as I had IBC & Invasive Ductal ) as well as Afinitor plus Letrozole which I have been on for 2 1/2 years but has stopped working. So lots of chemo. My oncologist will be putting me on Ibrance plus Letrozole next week. Ibrance works similar to Afinitor in that both use an AI (Letrozole or Flasodex) with the drug which can stop cell growth and division in HR breast cancer. Hope this helps!
You helped me a lot!! Thank you so much for writing. This tells me that your doctor is also going to give you Ibrance + Letrozole even after you've had several other treatments.
I feel better already. I'm going to tell my Oncologist that I'll go along with his recommendation of the Ibrance with Letrozole. The other Oncologist is younger and does everything by the book. My Oncologist uses what he says is "horse sense."
Again thank you SO much for your input! I don't see my doctor til June 8. Maybe he'll change his mind about it. I'll let everyone know what happens. Kats3
Yes, let us know what the decision is. I will also let you know how I fare on Ibrance. I am a bit bummed that Afinitor isn't working as well especially since the new mouthwash has worked so well on mouth issues! I like your Oncologists comment on "horse sense". Best, Mary
My onc is older and uses horse sense, too, though she doesn't call it that! lol She rescues retired race horses. I think having an experienced onc who thinks outside the box can be really helpful, especially for those of us with mets who have been in treatment awhile. We are each so individual and each cancer is pretty individual, too. I fear my onc's retirement more than I fear progression!
My first oncologist of 3+ years moved to Canada recently. I have only had one appt, so far with my new one. I feel she is a good doctor, but I want her to be very perceptive and patient and thinking of all possibilities...listening to me always, as the earthly captain of my ship...though I'm only the co captain to the Great Physician. He is my Healer!! I don't trust big pharma or the heavy focus on only medicine by all docs, and disregard of nutrition as medicine. I am unique and I want tteatment tailored to me...what is very best for me. We all do, right?
I think the consulting oncologist may have a valid point. If you have failed all hormone treatment options with tumor growth while on each one then Ibrance/letrozole combo may not be that effective. Ibrance/letrozole treatment effectiveness is dependent on letrozole being effective. Since you may have failed this in the past, this combo just may not be that effective. Have you been tested for hormone treatment resistance/aromatase inhibitor resistance? This testing may help guide your treatment. I am hormone treatment resistant based on genomic testing. Therefore at this time chemotherapy is my only option for now This was difficult to accept however, it has been relativity easy being on chemo.
If you are truly interested in CD4/6 kinase inhibitor therapy you may want to look into clinical trials with Abemaciclib as it is the only CD4/6 kinase inhibitor currently that shows effectiveness when used alone.
Thank you for all this good info! I haven't been tested for hormone treatment resistance but would like to be! My Oncologist says that I'm not 100% resistant to the Aromatase inhibitors. I respond for a while. Who knows?
Another factor in my case is that I have Lobular BC with a Pleomorphic variant which makes it a little more aggressive. From the Webinar that I watched on Lobular BC it was mentioned that chemo works best on patients such as myself. That's probably why I did the best on Xeloda/Capacedebine, an oral chemo pill.
My dosage has been upped on the Xeloda from 1 week on and 1 week off to 2 weeks on and 1 off. This will tell the story as to if and when I switch to something else. I guess sooner or later cancer resists and mutates and then it's on to another drug.
As much as I don't really want to get into clinical trials, I may have to down the road. I have to travel quite a distance to get into them.
Are you on IV chemo or pill form?
Thanks so much for shedding light on my situation. I appreciate your suggestions very much! Kats3
Yes, after a while we all unfortunately become resistant to the treatments. For some it takes years and for others it takes months.
I am currently on paclitaxol(Taxol) and capcitabine(Xeloda). I had 8 rounds of paclitaxol only. Just added capcitabine a week again. I have some pesky liver mets that just do not want to shrink much on paclitaxol. Thus added the capcitabine to see if they will shrink further. Hope is to have them shrink further.
Yes, you are so right that "it" can take months or years. I think that is what I am reacting to now. I am in my second ibrance cycle. But have read of people who have cancer either "stable" or appearing to be in remission and only to have it "come back" with a vengeance. It is the not knowing that frightens.
Another option for those of us with E+ mbc who have used several hormonal treatments is to have a course of low dose estrogen treatment. In the long ago past, estrogen was one of the few available treatments for bc, and using it can "reset" the cancer cells so that they will again respond to the anti-estrogen drugs.
Hi Kat. I was put on Ibrance and Letrozole in January as my first chemo and it was an epic fail for me right out of the gate. By the end of March, my tumor markers had started rising too much to ignore. I just started Capesitabine/Xeloda yesterday...hopefully it will be a better option for me. Let us know what is ultimately decided for you. All the best.
But sometimes TMs go up due to dying cancer cells. Two months is a very short period of time to be on a hormonal therapy before giving up on it. I hope you had scans that showed progression and that your onc didn't rely on TMs alone! My consulting bc specialist onc warned me that TMs could be misleading within the first several months of hormonal treatment...... that was 13 years ago, long before Ibrance.
Yes, time will tell on what drug will be recommended for me. I'll know more on June 8. Interesting that you didn't do well on Ibrance/Letrozole. I did the worst on Faslodex!
I hope the Xeloda will be better. I've gotten 2 years out of it. I'll keep you posted. Good luck!! Kats3
Yes i have. I was on Arimidex when after 14 years i had mets. So from 2013 til oct 2016 i was on arimidex. Then femara for 3 months. Mets in lung came active again so in january i git ibrance/faslodex.
My body couldnt take it so i will be on Kisqali later this month.
HI, I don't think there is an easy answer for you! So much is individual. If you got a long time on each of those hormonal treatments, like several years total and a positive response to each one, it is probably more likely that Ibrance could be helpful. One issue in this decision making is that Ibrance is still pretty new and in trials it was only used as a first or second line treatment so there isn't really data about using it later and that may be one reason for the consulting onc's opinion. If you are still holding your own on Xeloda, it might make sense to continue on it.
I have been in treatment for E + mbc with bone mets for just over 13 years. I got nearly five years from Femara, along with Zometa, then several years on Faslodex alone. Added Ibrance to the Faslodex about 18 months ago when there was minor progression. Was on that combo for either 9 or 10 cycles of Ibrance. I developed some lung issues that may or may not be related to Ibrance, cancer, who knows what. Have been on just Faslodex again for a number of months.
If I were in your shoes, I would have quite a conversation with my own onc about the reasons for the Ibrance suggestion and would do what makes sense to me. One problem is that whatever we do, we could have done something differently and that can be a real invitation to second guessing ourselves later! But we have to make our decisions one step at a time with the info we have at the time. Something you might do for yourself is keep notes about your reasoning about treatment decisions so later you can go back and remind yourself that you used sound judgement at the time. No crystal balls! Alas!
Personally, I think it is really wonderful that Xeloda has worked for you for two years! That is often not the case for those of us with an E + cancer.
Thanks for your reply. You've done exceptionally well on your meds for your bones! 13 years of treatment and still going strong. Wow! That's something to celebrate!
I only got several months on Arimidex, Tamoxifen, and 3 months on Faslodex. I'm doing the best on Xeloda, the chemo pill, with almost 2 years coming up in June. With my dosage increased, I'm hoping my markers will get lower and I can stay on Xeloda.
I have a feeling that the Pleomorphic thing is preventing me from having a better response to the anti-hormone drugs. I have no idea how I'd do on Ibrance. I'm willing to experiment, though, without being in a clinical trial. I like the fact that I'm not nauseated with Xeloda. My appetite is good and I have enough energy to do basic activities.
Tell me: Do your bones hurt when you do physical things such as lifting, etc.? Mine do. I don't like this at all! I have to take it easy it seems.
Yes, I'll take your suggestion about the long talk with my doctor and also writing down my reasoning about treatment plans and changes. It sounds like you have a great Oncologist!
I'll ride out the month of May and see what happens at my appointment in June.
Indeed she has done well! It could give hope but we just never know. As to lifting, I have been told not to lift more than ten pounds. Believe me, I feel it if I unknowingly lift something that is heavier than that.
I have had tamoxifen, letrozole following chemo for original BC. 20 years ago. Now on xgeva and faslodex and starting iBrance today!! I have MBC est+ mets to bone and now liver after 2 years.
Yes. I have had Taxotere and red devil, with cytoxin with original diagnosis. With recurrence I had 1.5 rounds of Doxil / Taxol had to stop severe reaction then Xeloda before Ibrance, letrozole and xgeva. Perhaps because I didn't get full regiment of Doxil/Taxol it didn't count. I am ER / PR +, Her2- with bone mets.
Ibrance and letrozole are FAD approved since 2015 they are considered 1st line treatment but they work against the cancer differently than Zelda - you don't need a clinical trial to be on it. I would go with the oncologist recommending it. Do your own research, you could ask the first oncologist why is this a good choice, could you share some research with me? Ask if this is the standard of care for me?
I have bone Mets after breast cancer I had chemotherapy and then on hormone drug anastrazolr for 1 and half year ,now i.m on ibrance 125 mg + fulvestrant injection
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