Today I received the dreaded news from my oncologist that my disease has progressed and we need to discuss change of therapy.
I have been on Ibrance /Letrozole for 18 months with little side effects and I dread having to change therapies. I will not do intravenous chemo as that almost killed me the first time around.
Is there anyone that had to change therapies after Ibrance stopped working? And if so which one are you on?
I will know more after my phone consult this Friday with my oncologist.
I have been on a few herceptin perjeta after ibrance but had bad reaction to it . Now I am on affinitor and aromasin. Anytime we have to deal with a change it is extremely anxiety producing.
Oh no!!! That is awful! I am so sorry you have to deal with the insurance in order to get what benefits your health.
Hi Anja,
I'm so sorry that Ibrance has stopped working!
I'll mention that, a few months ago, as my doc and I were thinking that my time with Ibrance might be coming to an end (I'm taking things month-by-month right now...), asked her to tell me what my next few treatments would be (and why).
She laid out the next three, which made me feel pretty confident that there was definitely good life after Ibrance. They were all pills/injection, no IV yet, and after reading about side-effects (of course knowing that most/all won't actually affect me), I realized that while Ibrance is a great drug, it's not the only one/the end-all-be-all.
I'll note that the third in my future series was one of the CDK4/6 (?) inhibitors, a close cousing of Ibrance....It was Verzenio I think. This is based on studies that show that Verzenio is not simply an alternative to Ibrance, it can actually be effective after Ibrance "fails".
What I liked about having it be the third next treatment is that I felt like a break from that type of drug could produce an additional boost, since a couple of years ago on this site I read about a study that showed that taking a break from Ibrance....as short as 6 weeks, if my memory is correct (unlikely)...sort of re-sets it.
So, long-winded answer, but just wanted to chime in to say that things might actually be better than they feel right now...I'm certainly hoping that's the case!
Thank you Lynn. It is great to hear that it isn't Ibrance or nothing and it is encouraging to hear about the calm, planning discussions going on with your doctor. I'm grateful to know this going forward. Also, amazing what treatments have been developed over the last 15 years.
I started on Letrozole, then added Ibrance a few months later, when it was first approved. *45 months.
Then switched to Faslodex, also combined with Ibrance. This is my current treatment. *23 months and counting (but seem to be coming to the end of the road with this one...unless I continue to successfully drag it out! My goal is to keep things at bay at least until the end of the year... ).
Next up is Piqray (Alpelisib?) + Faslodex (so I'll keep/overlap the the Faslo, like I did with Ibrance). This treatment is because I have the PI3K mutation.
After that will be Extremestane + Everolimus.
Then Verzenio, alone.
Then who knows what! But I'm hoping they come up with something new!
My local Onc shared this plan and my Duke onc agreed with it.
I hope that helps!
Lynn
• in reply to
Just looked up the alt. names...Everolimus = Afinitor; Extremestane = Aromasin; Abemeciclib = Verzenio.
BRUTAL!!! Going to be 104 today (real temp...not the "feels like" temp!). So I got my biking in early and will def have some swim/float time in the pool this afternoon! It's probably glorious in VT...
Yikes! It has been an unusually hot summer here in VT. We don't have the 100 degree temps but when it is 90 and humid, it is unbearable! It seems as though the heatwave "broke" yesterday, today it's 80 with a breeze. We are headed to Lake Willoughby this weekend. Stay cool!
xo Jade
Thanks Lynn! You perked me up!
I remember reading too that a restart of Ibrance after 6 weeks may be a renewed successful treatment.
I do feel better reading about options that may be successful.
I think I'm over the initial shock and will start researching the therapies mentioned.
I know how you feel as I’m in almost exactly the same situation. Getting scans bumped up to the end of this month to double check if there has been progression. I’m very happy on iBrance too. My doc is thinking of a perp-inhibitor as a next treatment. I don’t know more than that and haven’t stomached looking into it yet for the same reason. Chemo infusion in the past was “ok” but I didn’t function well at all. Right now most people do not have any idea of my health status or know I’m being treated for anything as I’m so active.
13plus, thank you! I will check into that possibility as well. I was fairly active too, and felt ok, therefore thinking my cancer "must" still be stable.
I hope your upcoming scans will only show good news or manageable news!
I'm sorry to hear Ibrance/Letrozole stopped working for you.
It's always a difficult and anxious time whenever a treatment stops working, but especially the first treatment. The good news is you have many options before IV chemo.
These are the treatments I've been on since Letrozole (Ibrance wasn't available in 2013 when I was diagnosed): Afinitor/Exemestane, Faslodex/Ibrance, Xeloda.
I have been right behind Barbara with same treatments after Ibrance stopped for me. It is very disturbing the first time a med stops performing for us. Once I realized this is most likely the pattern of my journey I now just go with the flow but they to educate myself on options as I go... keep the faith!
Yes. Try hard to not get overwhelmed and stressed over treatment changes. It happens to all of us and you are still early in the game and have many choices of meds in front of you. Your oncologist will lay out some plans... hang in there!
Hi. At the moment, I am on Exemestane only (just my 3rd day today) after Ibrance/Faslodex failed. My oncologist doesn’t want to put me on Affinitor yet till after I have either SRS or WBRT on my brain Mets because he doesn’t want me to experience side effects from both radiation and Affinitor. I will find out this weekend whether I can do SRS. There’s also Xeloda in the pipeline if Affinitor/Exemestane stop working. And I read somewhere that Vinorelbine (Navelbine) comes in oral form.
I’m sorry Ibrance/letrozole has stopped working for you, being told you have to change treatment is so stressful (and scary) best of luck on Friday, I’m sure your oncologist will have a plan and pray it’s successful for you xx
I’ve been on the same drugs for 16months now and like you coped reasonably well. There are so many new meds available now. I feel sure your Oncologist will find the right one for you.
Best wishes and I hope all goes well.
Cheryl
• in reply to
Thank you Cheryl!
Hi Anja,
Of course you are feeling disappointed and deflated. I think we can all relate to feeling that way when we receive bad news. But that doesn't mean that there are no other treatments out there for you. I've never been on ibrance, so I know that it is possible to do well even without this drug. I wish you all the best with your consultation on Friday with your oncologist. Hopefully your next line of treatment will be even more effective.
Yes, of course. My oncologist put me on zoladex, followed by letrozole a couple of weeks later once my oestradiol levels had dropped, and zometa. I was told that fulvestrant, along with piqray, would be my second line treatment.
Sorry to hear the news! Have you had a genome test to see what genes you have that there are 2nd lines of treatment? If not, ask your oncologist to perform the test. ❤️🙏❤️
Anja good luck with your next treatment. It is scary to change, but many members here got great results with the change. So many options. Like you, chemo almost killed me!
Yes, all the uplifting comments above I can echo. Ibrance and Faslodex kept me going for nearly 20 months. Not wanting to do another chemo (I’ve already had 3 previously) opted for Xeloda oral med. For so many it works great, but for me it was a big mistake! Dramatic chest pains and SOB from 1 two-week cycle took me 10 weeks to resolve. On the right road now; I’m now just past my 4th treatment of Gemzar (gemcitabine) and doing very well. Schedule is 2 weekly treatments, then skip a week. I did have a port placed and SO glad I did-makes everything so much simpler.
What ever you and your onc decide to pursue, options continue to become available. We are all in it for the long haul. Hopes and prayers go with you. kc
Thank you! Yes, it was mentioned above also, one can have no side effects from one med and the next one can have major side effects from sane med. I have lung tumors, a subclavian dvt and asthma, so any med that may effect son like you my onc may rule out. I'm truly glad Gemzar is not having those side effects for you.
Thank you Sandra and you are right! I should only look at the positives. When I was hospitalized with the dvt, lung Mets and lymphnodes Mets plus a tiny hole in my heart, my prognosis was three months and we were arranging, as advised, for end of life necessities. Here I am, 18 months later. I beat those odds once and there's no reason I can't do it again with a different treatment. So, onward I go! I'll do everything I can to not let sadness or defeat or anger stand in the way of a possibly new DX of "stable" on a new regimen.
You ladies are phenomenal. Support in this journey is all important. I love you all❤️
Ibrance stopped working for me after 18 months as well, now I'm on xeloda done first cycle, hoping it's going to kick cancers butt. I know it's not nice to hear its stopped working but at least now they can sort out another treatment, I wish you all the best. Tracey
I remember how disappointed and afraid I was when Ibrance stopped working after nine months. I’ve been on Afinitor and Exemestane for a year and am still stable. I don’t care much for the side effects, but it is manageable. Best wishes.
I’ve been on ibrance and Letrozole since 9/19 and was taken off ibrance for 5 months starting March because of Covid. Restarting this month and scans in December and June showed “stable”. I too hate the thought of having to change at some point but my onco nurse assured me there are several other meds that are equally beneficial.
I’ve also read various posts from others for whom their treatment stopped working but the replacements were also tolerable and effective. Hope they come forward now to put your mind at rest. Please try not to worry - the mind/body connection is so strong.
Thinking of you and hoping you’ll feel better after your consult. 🙏🏻
How fantastic that your latest June scan showed still stable after a 5 month break from treatment. That's great to hear. Yes, I am so grateful for the many reactions and shared experienced on treatments other than Ibrance. I will certainly post my onc's recommendations. Important to know for all of us. I learn so much from each and every one. This support is amazing and sustains me.
I was on Ibrance and Faslodex for 6 months and first PET-CT showed progression from regional disease to spinal mets. Started Xeloda in May and PET-CT in July showed some decrease in size of mets. Hoping and praying it continues to work. Some side eff effects but manageable. I still work full-time as a telehealth RN. I'm in a Facebook group for Stage IV Xedoda users and lots of positive stories. Keep the Faith!
Kudos for working full time!! I hope positive results on Xeloda will continue🙏. There's quite many girls on Xeloda I understand. Keeping the faith! Hugs.
Yes girl! I was in the same boat. Primary tumor regres after about 18 months. So Ibrance stopped working for me too. I am now on Everolimus and Aromasin. So far so good! Some mouth sores but no big deal. Doc can give you mouthwash. There are always treatments you can try and new ones every day! Keep the faith and stay positive!!
I am so sorry to hear that. My two breast tumors started to grow back. I had lumpectomy done and they did not change Ibrance treatment.I am still NED.I was diagnosed in 2016 lumpectomy in 2018.
Hi I was exactly where you are now 3 weeks ago and dreaded a new treatment. They put me on capacitabene 1300mg twice per day. I have just finished two weeks on and it wasn’t too bad. I was given anti sickness tablets and I needed them about 4 hours after taking the first dose each morning for stomach cramps. Other than that it’s been fine although I miss my Ibrance. Keep us posted on how you are getting on.
I will post what my onc has in mind as a next line therapy. Thank you for sharing your experience with capacitabene. I so hope this will work for you without complications 🙏. Hugs
I was on Ibrance and letrozole since Dec 2016 and has recently stopped working. I am now on verzenio and flasodex for about a month. So far my tumor markers have stabilized and liver enzymes are back to normal. Hopefully this combo will give me the same amount of time as the last one. Hope you find the treatment that works!! 🤞🏻
There are many other choices of chemo besides Ibrance. The cancer eventually outsmarts the chemo and we have to find a new treatment to trick the cancer. It's our new way of life.
There are many choices and they keep coming up with even more. Your doctor will find a new combo for you. Best wishes. Blessings, Hannah
I know it’s hard to change from one oral chemo to another when you feel pretty good. I was on Ibrance for 2-1/2 years then had to switch to Afinitor which has proven to keep me very stable according to scans. I’ve had hardly any change in side effects. I go to my onc this afternoon and while my markers have been extremely erratic through my entire journey, I just had a scan 3 days ago and it is very, very stable which is great news. I’m like you in that infusion chemo is something I’d rather stay away from as long as I can. All treatments certainly do not react to everyone the same way and that’s what makes this journey so hard. Stay strong. We’re all in this together.
Thank you Charlie for your message! Congratulations on being stable on Affinitor, that is fantastic news. Yes, we are all in this together. Support is everything. Hugs.
I am sooo sorry. I am sure someone will respond because I have come across this in reading posts on this board. People experiencing this and getting on new meds. Good luck and don't panic. Stay positive as much as possible. I will include you in my prayers Anja.
I too had Ibrance stop working after 21 months. I too had little or no negative side effects from Ibrance. I was devastated by the news. But as I accepted the disappointment, I realized this is a bump in the road. I am now on Piquay as I have that mutation and Fulvestant(spelling?), the butt injections. I feel better than ever.
It is scary and I know I always go to the worst case scenario. I remind myself daily to be positive and look at all the wonderful things I can do and how strong I am and to take each day as the gift it is.
Thank you! I don't know if I have that mutation ad I wasn't tested. I wonder why we are not all automatically genotyped for mutations to identify which chemo would be most effective. I'll ask my onc today. Hugs
I'm a long timer with mbc and was diagnosed well before meds like Ibrance/Afinitor/Verzenio were around. I had "extensive bone mets" at first diagnosis and got nearly five years from Letrozole (plus Zometa for my bones) and then got over 9 years from Faslodex. I was part of a local face to face mbc support group for most of that time and was not the only one who got more time from faslodex than fromf Letrozole. Unfortunately, the group fizzzled out when the social worker who fed us most of our new members left but I learned so much and got so much support from the women I met there. I''ve now been on Exemestane plus Xgeva for my bones. About 2 1/2 years on the Exemestane. When I was first diagnosed, alot of women with E + mbc who did well on anti-hormonal treatment would opt to take a low dose of Estrogen for awhile after the 3 available lines of hormonal therapy each worked for quite awhile and then stopped working, with the idea being that the estrogen would "reset" the cancer cells and then those hormonal therapies would hopefully work again. When I saw a highly respected bc specialist onc about a year ago, a man who was well known when I was first diagnosed and still is today, I mentioned that to him and asked about it and he expressed concerns about the risks of being on estrogen, even a low dose. He thought risk outweights benefits. I don't know what will be suggested when this exemestane stops working but I'm not going to worry about it. I should probably mention that I had a few rounds of Ibrance during the time I was on Faslodex, but it damaged my lungs (interstitial lung disease) which led to some heart damage. If you develop any breathing issues while on Ibrance or Affinitor, report it immediately! One of my good friends with mbc died from lung issues caaused by Affinitor when neither her onc or the doctor treating her in the ICU recognized the connection between Affintor and lung issues and kept giving it to her. Her experience and mine have made me very sensitive about lung issues with these meds.
You made me think! I have pleural effusion and now wonder if it may be Ibrance related.
I started chemo in May (Abraxane) as Ibrance stopped working and I had numerous new bone mets. My oncologist lowered my dose by 20% due to the side effects so I’m hoping this new level will help and give me a decent quality of life. Chemo is not as bad as I expected so don’t rule it out. There are so many different drugs and the way they treat MBC compared to an original BC diagnosis is different. Good luck and keep your mind open to all options.
I started at 125, and my whites and Neutrophils tanked and I had headaches, neuropathy and just felt Ill overall. Then my onc lowered it to 75mg and that worked beautifully for 18 months. The efficiency in a lower dose of Ibrance is not effected. It is how your body reacts to it.
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I did type Betbop and spell check insisted on changing your name 
Ibrance/Arimidex stopped working 😥
ibrance not working 
Ibrance not working? Update
