Hi everyone unfortunately I’ve been told today that Ibrance hasn’t worked for me.

[Sarahdellar45]

Ibrance not working

[Hidden]

Hi Sarah,

Sorry to hear that. How long were you on ibrance for? Has your oncologist spoken to you about your next options?

Take care,

Sophie

[Sarahdellar45 in reply to Hidden]

Hi Sophie

I was about to start my 3rd cycle. His not sure whether to put me on a mild form of chemo or a more aggressive kind as this has worked before. I’m just not sure how many options are left

Xx

[Hidden in reply to Sarahdellar45]

Hi Sarah,

That must be really hard considering you were only just starting out on that treatment. Please try not to think in terms of how many options there are left (I know I would prefer not to know). New treatments keep coming out, so that does not mean that you are nearly out of options.

Sophie x

[Sarahdellar45 in reply to Hidden]

Hi Sophie

Thanks so much for getting back to me. I’m just so gutted because it was a long term treatment without really bad side affects. I have every faith that my oncologist will make the right decision but not looking forward to another bout of chemo.

Xxx

[Hidden in reply to Sarahdellar45]

Hi Sarah,

You're welcome. Unlike many ladies on here, I have never been on ibrance but have done well on the treatment my oncologist put me on in 2018. Hopefully the next treatment you go on will be much more successful. I am open to the idea of chemotherapy too, if it is needed in future.

Sophie x

[Teddielottie in reply to Sarahdellar45]

Sorry to hear that ... did they say why it hasn’t worked ...was there progression or did it affect your blood counts too much ? It seems very early days after only 2 cycles . I was told at the start that we were on a ladder , and this was only the first rung of the ladder ... there are many more rungs , so hang in there ! I would ask for genomic testing too . .Wishing you well ! x

[Nicksmom91 in reply to Teddielottie]

Please explain genomic testing..

[Eliactida1955 in reply to Sarahdellar45]

I took Ibrance for two months and everything disappeared on my pet scan. I’m still on it for 17 months now . There are other meds you can take if Ibrance doesn’t work but I don’t know your condition and maybe chemo is the way to go. Weigh all options -for me I personally refused all of that and I’m ok but you never know. I hope all goes well with you.🙏🌹

[SMPG in reply to Eliactida1955]

So, you are in remission? There is nothing there, you say. If this is the case, why do you have to continue the treatment at the same pace? What is the rationale?

[Justme153 in reply to SMPG]

She probably means NED and as everyone on here knows you don't stop treatment when your NED. Cancer is still in your system waiting it's opportunity to attack again. I had a pet scan that came back clear. But there was cancer in my right ovarie . The Doctor said it was just too small for the scan to pick up yet. So even though scans come back clear doesn't mean there is no cancer. It could be just too small to be seen yet.

[Eliactida1955 in reply to SMPG]

This is for life there is no remission as I have stage 4 M b C met to bone that doesn’t light up or show anything at this time. Hopefully it will stop the cancer from progressing -I don’t know if you are stage 4 if not there are options . There were options for me and I didn’t choose them. There is no cure for stage 4. Thanks

[SMPG in reply to Eliactida1955]

Yes, I have mets in my lower spine (sacral area). So, yes, stage 4. I am 66 yrs old. And somehow I don't feel my age and I don't feel like a cancer patient. I know I have it and it is going to kill me but I don't want to agonize over it. I like to dance, wear nice clothes, etc. etc. But I am not in denial, no.

[Eliactida1955 in reply to SMPG]

I try not to think about it but it’s there . I am 65 and it is up and down sound and showed right femur lesion that is gone -the rest is stable according to the scan. I don’t hurt a lot so not taking for pain just sometimes Motrin or Advil.i love dancing too but the truth is I have never felt the same as before diagnosis. I hope this med continues to work even though the side effects are awful-leg weakness and hot and cold flashes. I am taking one day at a time hoping not to progress but I know what to expect. I wish the best for you-we are alive and hanging in there!!🙏🌹

[Mindysooty]

Hi, thats disappointing for you but good to hear theres more options to think about . What about getting on any trials, is that something youve discussed at all. I think theres a few on here who ibrance didnt work for, for one reason or another. best of luck to you. X

[Hidden]

Hi Sarah

I been thinking of you.

I’m so sorry to hear that about the Ibrance. We all hope we will be on it for as long as possible.

I am always surprised to hear about the number of different treatments that there are out there.

I know some of the ladies have had genomic testing to find out what exactly is the best way forwards. Is that something worth speaking to your Doctor about?

Keep in touch

Clare x

[Sarahdellar45 in reply to Hidden]

Hi Clare

Thanks for replying, I’ll definitely speak to him about it next week.

Hope your doing ok

Sarah xx

[Hidden in reply to Sarahdellar45]

I’m doing ok thanks. Have been enjoying seeing the sunshine.

Hope you are feeling well

X

[Hidden in reply to Hidden]

Hi Clare,

That's a really good point you mentioned. Genomic testing is free on the NHS. I had it done in January and found out that I have the PIK3CA mutation, which means alpelisib (piqray) is an option in future.

Sophie

[Barbteeth in reply to Hidden]

Hi Sophie

Were you given the genome test or did you have to ask?...nobody has ever suggested this to me so just wondered if I ought to request this

Barb xx

[Hidden in reply to Barbteeth]

Hi Barb,

I asked my oncologist about it and she had absolutely no problem with putting a referral in for me at a neighbouring hospital. I had to have another biopsy (my fourth!) an ultrasound and blood test. When the sample was taken I asked to see it before it was taken away for analysis.

Let me know how you get on,

Sophie x

[Barbteeth in reply to Hidden]

Thanks Sophie

If it involves having a bone biopsy ...don’t fancy that but when I had my gall bladder out the surgeon did take a liver biopsy then but nobody’s mentioned this since?... I sometimes wonder!!!

Barb xx

[Hidden in reply to Barbteeth]

You're welcome, Barb. I didn't have a bone biopsy. It was another breast biopsy. I would go ahead and ask about genomic testing. I wanted to know what I was up against and about possible future treatments. I wonder why you did not hear anything else after your liver biopsy? Maybe it was clear.

Sophie x

[Barbteeth in reply to Hidden]

Something else to ask about!!

Barb xx

[Hidden in reply to Barbteeth]

I know what you mean! My oncologist must be rolling her eyes when she sees I'm her next patient, as I enter her consulting room armed with a notebook full of questions, observations and three-monthly progress reports!

Sophie x

[Mcangel11 in reply to Hidden]

Ha Ha they call me the folder girl!!

[13plus in reply to Barbteeth]

Barb they can use different types of biopsies for the genetic tests, it doesn’t have to be bone.

[Barbteeth in reply to 13plus]

Oh thanks...didn’t know that

Barb xx

[Marieleb]

Hi Sarah, so sorry to hear that... Not being able to stay on Ibrance feels like a second punch in the face... I was there just over a year ago.... After a mere 7 months I was told that unlike so many on this forum Ibrance would not be my trusted companion for the next few years...It was tough , I am not going to lie, even tougher than original diagnosis bit a year on I am still here.... There is a life after Ibrance ... Actually for me there was another 4 treatment options after Ibrance... You become accustomed to managing your expectations, celebrating the successes and taking the setback on the chin...the road is long and that is a good thing!

[Sarahdellar45 in reply to Marieleb]

Thank you so much for replying. I know there are still some other options but I so wanted this to work

Xx

[Marieleb in reply to Sarahdellar45]

I totally get it... I am putting on a brave, philosophical face on but back in May , June I was totally distraught... You can read a few of my posts and answers to others on this site.... It is a grieving process... Treat it as such ... We don't have to be " brave" and " fighters" on full time basis... Through this I have learned to adjust my pace, my mood, my demeanor depending on how I feel... Take the time to process things , to feel cross, hopefull, fed up, inquisitive, chatty or lonely .. Whatever feels right at the time....Sounds cheesy and a tad patronizing ( sorry) but YOU are what matters in this journey, others will help( or hinder) but you have to be honest with yourself on what you feel and work with it....

My world collapsed twice, at diagnosis and when Ibrance didn't play ball... I tried to hide it at the time and I carried it like a dead weight for a few months.... Counselling helped me to make my peace and I am now in a much better place.... I have chosen to manage my expectations at each treatment and see everyday as one I stole to this f. Disease... It does not stop me being cross at lost chances and sad at the cards I have been dealt....

Do not hesitate if you have any questions...

[mariootsi in reply to Marieleb]

Beautifully said!

[Have-faith in reply to Marieleb]

Hi Marieleb. Could you share what your treatments were after Ibrance? Ibrance worked for me for about 9 months. I was put on Faslodex after Ibrance. This lasted 4 or 5 months and now I am on Afinitor and exemestane. I am trying to see if there is another oral treatment after this combo. My doctor has told me after this it would be an IV treatment. I would like to hear there is another pill out there. Faith

[Marieleb in reply to Have-faith]

Off course. After Ibrance I was put on afinitor/ exemastane ( progression in existing mets +new mets), then Faslodex ( progression to liver) and finally Xeloda ( further progression to existing mets)... I have started Taxol 6 weeks ago...A word of caution so, please don't read into my merry go round of treatment any signs that those would not work on you ... Everyone is different...This is one of the reason I stopped posting on this site, apart from the fact that I originally felt , with so many still on Ibrance, it was a bit harder to get that " on the same boat " feeling ( this was wrong BTW but the mind does not always work on rational way) but also more importantly because I did not want to dishearten people who were just starting on a treatment that hadn't worked for me.... We are all different! The only thing I would advise you to do is to try to identify ( genome testing, not to be confused with BRCA genetic testing) if you have been any mutation... I am still trying to work this out ( long story) and that leaves me feeling that we are walking, if not blind, at least partially sighted into the fight... Sadly my medical team does not see it that way... The other think I would say is that Exemastane / affinitor was most definitely the worse treatment for me re side effect.. the others were fairly mild ( well apart from taxol/ combination drugs turning me into a bold rolly Polly toy!

Happy to answer any question, any time

[Have-faith in reply to Marieleb]

Wow. What a great reply. I totally understand everything you said. Thank you. Yes. We are all different. I have not had any side effects on the afinitor and exemestane so go figure. I have a friend on Taxol. She has been on it for 14 months now. 3 treatments a month. Three Mondays and then one Monday off. She is NED but her onc wants her to stay the course as it is working. She feels fatigued but has figured out what days she will be tired after treatment and works around this. She is 66 and retired. Thanks again for your informative reply. I appreciate it. I hope you get to NED too!

[Selmac in reply to Have-faith]

I'm in the same boat. I was on Faslodex and Ibrance for 6 months. Had progression and the Oncologist did a gene study and said I needed to be on Afinitor and Aromasin. When it quits working I'm not sure I'll go any further. Quality of life us important to me. My Mother is 88 and if she got cancer she would fight it to the end. Were so different but I love her dearly. Couldn't ask for a better Mother.

[Hidden]

Hi Sarah,

I'm so sorry that you received this disappointing news. Has your doctor suggested a change, or to give it more time? I had a similar experience several months in, but was able to stay on the treatment and later saw improvement...I hope the same is true for you.

Take care,

Lynn

[MyMiracle13]

Hello Sarah. I wonder why your oncologist is stopping Ibrance after only 2 cycles? From what I’ve heard from the ladies here and also from some oncologists (including mine), it takes about 3 to 4 months sometimes 6 to know if the Ibrance is working or not.

[13plus in reply to MyMiracle13]

Yes, thats how it was for me. It took a few months to be able to see it was working.

[Hidden]

I’m sorry the Ibrance didn’t work for you. You were on it a short time, was it stopped due to progression or did it lower your neutrophils too much.

[worldtravel75]

I too was told it can take at least 3 cycles to start improving on Ibrance. I had flight progression into soft tissue after 1 1/2 years but they radiated and will keep me on Ibrance with a repeat scan in 3 months. I’m interested in how many people are on only Ibrance and then when it fails they are put on faslodex by itself. I was started on both at the same time. Interesting to here everyone’s journey

[hdhonda]

What a disappointment! Have you called Pfizer? They may have a suggestion such as a change of hormone blocker. Sometimes I think that how hormone positive we are and how well the hormone blocker works may have something to do with how well Ibrance works. No doctor has said this to me. But sometimes I try to figure out things that I know nothing about. Prayers 🙏 that they find the right treatment for you quickly. Blessings Hannah

[Mcangel11]

I am sorry what test did they do on you to determine that .There are other meds

[mariootsi]

I'm so sad to hear your news but none of us can never forget that there are many options available.

I wish you success with your new treatment.

Let us know what it will be

[geewisdom]

You hang in there and DON'T give up, it's only a test. Stay positive and your not in this fight alone.