After seeing onc today, I’ve been told no more ibrance… instead zometa & faslodex only. I’m an emotional wreck, I don’t understand why she has changed her mind.
Am I on a slippery road now? Should I be worried, Should I get a second opinion, or should I just try this new combination? I feel so low. I left hospital & didn’t even get faslodex shots, I’ll go back next week and get them 😞
N x
Just wondering why? Was there progression? Is this your first line of treatment? I am feeling you today as my CT showed mixed results, improvement in the breast and worsening in the liver. I am on Ibrance/Letrozole/Zoladex. I won’t see doc until Monday.
Yes there is progression…. However…Last week she had a plan that I accepted that was given to me over the phone, but today it changed to this new combination and I’m a bit discombobulated to say the least.I don’t understand after seeing my scan results initially- said ibrance, letrozole, faslodex & zometa only to change it completely today to zometa & faslodex only.I will call on Monday and ask why can’t I remain on ibrance until next scan along with faslodex?
I hear that we need to be our own advocate, but it’s difficult to want something that a professional is saying no to.
Praying for us all.
I try and advocate for myself and just get shot down it seems like. I have an appointment at MD Anderson on the 8th and am hoping to get some real answers for the first time. I too pray for us all daily. What a nightmare.
I just seen this reply you gave to another woman about there being progression. (Plus, I use the word discombulated alot lately:). Just find out and ask her. Sometimes others mean well, we all want the lady(ies) to feel better but we are not doctors. So maybe wait or ask her to call you and then ask her straight out. (Catch her off guard, let I feel happens to us sometime). Like you, I hear certain words and then my mind shuts down and I never remember the rest of what I was told.
Yes, we are supposed to be our own advocates, but then again, we do not have the experience these doctors have or really understand the CT scan reports (only the final summary). So come right out and ask her at next visit, as to why she decided to take it out of the mix and that you cannot remember the reason she told you.
I think, although we are the ones who make the final decision or who choose to possibly get a second opinion on some area we may not be sure of, but we are not doctors and should not overguess our doctors who have studied for years for this type of stage iv cancer so there comes a point when we have to realize just because the author of the book says something or some other people on this board may have read something different, that it is best to get medical opinions from doctors and doctors that have examined you.
You can always get a second opinion if your onco explains her decision to ease your mind.
God bless.
Thank you, you’re so right! I’m just putting myself in a pickle really and that’s my fault because I’m normally a ‘manyana’ type of girl….and in this situation I can’t afford to be, so I’ve been OTT stressing and thinking this is it..chemo next then I’ll be doomed!!
I was anxious because I was on 3 types of meds and then going down to 1 freaked me out! How can this possibly be enough, but I researched and realised the results are good- if it works, so I need to embrace it and believe in it.
I’m pleased to report, my sore lower back after Faslodex shots is better, my mind is clearer and I am now occupying myself trying to look for a trial.
Hope all is well with you, I saw your post and will reply to that.
Sending you a virtual hug 🤗
I am sure she has a good reason. You were probably so flustered that you did not ask at the time. When you go back, ask her why and to explain it. You are entitled to that. That being said, do not go by what some of the ladies say on here. Everybody's body is different and there may be a difference in why they are kept on it.
Advocate for yourself, I take to mean ask questions that you are not understanding the answers to. But I choose my doctor's opinion 99.9% of the time because they studied for this, have years of experience in dealing with stage iv, so in the end if they explain to me, I am going to go with what they suggest. Unless it is chemo. I did tell her under no circumstances would I do chemo.
Hello Ntash,Ask for the facts as to why no more Letrozole and Ibrance and if it does not make sense to you, DEFINITELY get a second opinion. Be your own advocate but do get the clear facts first. I know how awful it is being left over the weekend without all the facts - it leaves you confused and worried, but Monday you will find out more. Please give yourself a nice weekend until then. You deserve a nice weekend!
Thank you…. I actually did have a good weekend- obviously every time imagination running wild every now and then!I’m just worried that getting a second opinion may take time, I didn’t get my shots on Friday but will definitely go and get them Wednesday.
My onc is just lovely and I should have just challenged her there and then. I don’t mind new combination of drugs, but why take me off ibrance when progression is not massive!! I’m calling her tomorrow for sure.
Hope you had a good weekend
N x
Maybe why wait until the progression is massive. I am not sure where you live but here in NY, it is not that hard to get a second opinion. Not sure if you live in UK or what but I guess even here in the US, it may take a while to get an appt. but my onco has always said I could have a second opinion done if I am not 100 % on board with her decision so that alone made me feel more comfortable so I did not look to have a second opinion.
I can feel your anxiety. I would just call the nurse and get some answers to your concerns. They are ok with I am sure they have a plan. And you will be ok. You are not on a slippery slope. Always remember you are in charge of your own health. If you don't agree with decisions let your onc. know. Zometa is just a bone strengthen. Your Onc is probably getting advice from colleagues on how to proceed. You will be ok.
Sorry this posted before I finished. So yes, try not to worry. And be sure to say what you want and stand by it. Yes, a second opinion is good if you don't agree with decisions.
Cheers, June S.
Thank you AddieYour words really helped.. of course they have a plan - they must do… you’re right!!
I’m accepting that I’m not on a slippery slope just yet, it’s just she said if faslodex does not work it will be oral chemo and that seemed like the bottom of my world collapsed all over again..but I was emotional by then to ask the right questions.
What upset me, was she clearly said over the phone I will leave you on ibrance because you are tolerating it well, and just changed her mind.
You sent this email to me but meant it for someone called Addie. However, if you want to stay on Ibrance then call back and ask for that. You have a right to object to decisions and ask for what you want. Hopefully, they haven't cancelled it yet and if so then ask your onc to phone back and reinstate you.
Cheers, June S.
It’s meant for you June… see the consequence of mish mash brains that’s over thinking!
Thanks for advice, I’m going to do just that… I just want to give it a try until my next MRI… I’m guessing that she can only say no!
Not sure if your doctor has a portal. Mine at Sloane Kettering do and I drop questions in there between visits. If you have this kind of thing available to you, write them with your concerns. It helps to write them out as they need to know how you are feeling.
Thanks AvidBookloverI can access my records but it’s all none sense! I can see graphs from bloods results but nothing else. I will have to definitely write a list of my concerns, even if it’s therapeutic purposes.
Absolutely get a 2cd opinion you should know why she wants to change treatment, you deserve a doc who gives you information and the opportunity to make informed decisions.
Thank you NPmary for responding
I don’t know how long a second opinion will take, I’ve not had any meds for about 2 weeks now! Faslodex Tuesday (god willing), ironic - I’m not good with needles, followed by zometa infusion on a chemo ward, first experience of this kind of treatment.
I’m going to call and try and speak to my onc, I just want to know why I can’t try falsodex with ibrance… that’s the only question I have.
Once she explains I hope I can be at peace and move on, I just wanted to be on that medication for a little while longer even though 17 cycle is a good run. It’s been such a tolerable protocol for me, and I have read that these 2 combination work well together.
N
Unless there is progression in a vital organ like brain, liver, lungs, most docs maybe all would leave you on ibrance, if progression is just in bone that's not considered vital and the regimen doesn't necessarily Chang. Let us know what you find out. I don't understand why she didn't explain everything to you. Where do you live? Are there cancer centers there? Let us know how you are and what happens. Wish you the best.🌺❤🌺
I know how scary progression can be! It's a huge reminder of how we just plain ol' don't have control over those lousy cancer cells! And that makes us so vulnerable! I am puzzled though about the plan your onc suggested on the phone,, as I have never heard of Letrozole and Faslodex being used at the same time. Ibrance and/or Zometa are frequently prescribed with one of those anti-estrogen meds. I have to admit to some skepticism about Ibrance as I had a horrible experience with it and it did permanent damage to my lungs. I started this MBC journey several years before the targeted drugs like Ibrance were available and quite a number of other women did well with the meds that were generally prescribed then. I heard of quite a few 20 year survivors and met a 30 year survivor at the annual Conference of the Metastatic Breast Cancer Network. All that said, it's important for all of us to understand why our onc's make the recommendations they do and have our questions answered. And getting a second opinion from a bc specialist onc can be reassuring. If you are in the US, the top cancer centers are those that have been designated "Comprehensive Cancer Centers", most are affiliated with medical schools, and they have highly specialized oncs who both see patients and do research. When I have attended bc conferences, it is almost all those oncs who speak about bc. You can find a list of the CCCs on the website of the National Institutes of Health. If you want help finding one as close as possible to you, let me know what state you live in and I can get that info to you.
Thanks for the offer of help PJBinMI, so appreciated… sending you a virtual hug x
Unfortunately I’m in the UK.
My Dr is a consultant and has been in the game for a while, I just wish the verbal treatment plan over the phone didn’t change to the plan that was given to me face to face at the hospital - this is what I’m finding difficult to deal with.
I know I’m beginning to sound like a whiney baby… but I wanted to remain on ibrance, happy to ditch letrozole. I just don’t get it when progression was small, surely I can give it a try till my next 3 monthly MRI? I will try and get answers this week.
I’m also doubting myself now…could remaining on Ibrance be a mistake. There has to be reason for the change of direction.. lord help me!!
Nx
From what I understand you were on Ibrance + letrozole (and perhaps Zometa) and you are now being switched to faslodex (and Zometa). Let's put aside the Zometa because that is a bone strengthener, not a a drug meant to thwart cancer progression.
Assuming that what you had was Ibrance + letrozole, I can tell you that this was my wife's treatment before she progressed after about two years. She was to be switched to faslodex *alone*, but we insisted that she also have a cdk4,6 inhibitor such as Ibrance or Verzenio. She then had a good run on Verzenio + faslodex. (She is now in a trial involving Verzenio + lasofoxifene, which is something like faslodex. )
In first line studies, the addition of Ibrance or Verzenio to letrozole or faslodex gives *significantly* better progression-free survival than does letrozole or faslodex alone. The *withdrawal* of Ibrance in the second line makes no sense to me (and I am a scientist). If you ask the reason for the withdrawal you will probably be told it is because the use of Ibrance or Verzenio as a supplement to faslodex *hasn't been studied in the second line* --- as if the grat success of those drugs in the first line provides no information at all. Again, to me this is crazy.
There is something else you should know: Women who start out on letrozole (or, more generally, an aromotase inhibitor) often develop something called an ESR1 mutation, which decreases the effectiveness of aromotase inhibitors. Unlike letrozole, faslodex is not an aromotase inhibitor, so a switch to faslodex after letrozole is a step in the right direction. At the moment, the National Comprehensive Cancer Network guidelines in the United States indicate that patients who develop an ESR1 mutation can benefit from a cdk4,6 inhibitor such as Ibrance or Verzenio in the second line (with faslodex). You can be tested for the ESR1 mutation with a blood test (called a wet biopsy). If you have it, then at least current the NCCN guidelines will provide support for either Verzenio or the continued use of Ibrance as a supplement to faslodex. (This is not to say that an ESR1 mutation should be necessary for continuance of Ibrance, only that the NCCN guidelines already endorse it in that case.)
In you are near London, I suggest that you get a second opinion at the Royal Marsden Hospital. There are some really great people there.
I hope this helps.
Many thanks for your detailed response, so helpful!I’m asking, fingers crossed it gets approved or at the very least a good explanation as to why not! If it’s rejected- I shall get the second opinion.
I think this is my first hurdle so I’m finding it all difficult, on a positive note… all of this is keeping my mind off my Faslodex shots I’m getting tomorrow… every cloud and all that
I hope your wife is doing well on the trail.
My wife is doing well on the trial (Verzenio + lasofoxifene). Results from her latest scans came back yesterday, and they showed essentially no progression.
I want to follow up a little about the possibility that your cancer cells acquired an ESR1 mutation while you were on Ibrance + letrozole. This is fairly common and can be ascertained now with a blood test called a wet biopsy. I am stressing this because, at least in the United States guidelines from the National Comprehensive Cancer Network Version 6.2020, the use of a CDK4,6 inhibitor such as Ibrance or Verzenio along with Faslodex (fulvestrant) is recommended as beneficial in second line treatment. This might have some effect on your ability to get Ibrance of Verzenio. I will append the relevant text below, but I will also recommend again that you make contact with the breast cancer docs at Royal Marsden Hospital.
Here are the relevant sentences in the paragraph about second line treatment (page MS-61) from the latest National Comprehensive Cancer Network guidelines:
Estrogen receptor 1 (ESR1) activating mutations are frequently detected in patients with prior exposure to AIs. Tumors with these mutations are generally resistant to both AIs and tamoxifen. Certain tumors with these mutations retain sensitivity to fulvestrant. All may benefit from the addition of a CDK4,6 inhibitor, mTOR inhibitor, or alpelisib in combination with fulvestrant if tumor has PIK3CA mutation.
Perhaps the UK guidelines now show a similar sentiment in the case of an ESR1 mutation.
Hi all
Thought I would just update you all after your supportive messages and advice.
I’ve had contact from BC nurse and it turns out that I’m off ibrance because of funding.!!! Onc used the word ‘progression’ in my report. I emphasised that progression was same area and small… but it didn’t matter….
Faslodex only for me as second line treatment, I feel sad. Confident I could have have had a longer stint with faslodex & ibrance.
Trying to figure out if this is NICE guideline or postcode lottery? I’m in the UK.
Any advice?
Odd, I told my onco after three months on Ibrance I refused to take it (I never knew then that you ask for a lower dosage.) She started me on 125 mgs. and my week off (she said nothing except that the taste of food would change) about my week off.
OMG. I expected to feel better and/or much less tired. Instead it was the week from hell. I live in Brooklyn, NY, it was August and during my week off I was freezing, Was laying in bed, had blankets on, a wool robe and my teeth were chattering so much I had put a towel in my mouth bc I was afraid they would crack. It went on the next two months also to the point I started to get depressed when I knew the week off.
That is when I found this board and found people that felt better on the week off, or felt the same the week on or off, or people like me that felt so much worse.
I thought Zometa was a just a different type of med like the Verzenio I am on now. If so, maybe she thinks things are going well, so that you do not need to be on both of them. Sometimes when news is given to us, we are taken aback so we do not think to ask questions. I would shoot her an email and ask if she can call you to quell some fear you have (I never put things in writing...I think that scares them.)
I am not a doctor obviously but maybe it is actually a better reason that you are stable for a while, so not point on being on both of them. Let us know.
Faslodex??
Faslodex
Zometa
Faslodex discomfort
