I’ve just had a call from the Oncologist and unfortunately he has confirmed that my liver MRI scan has shown a new growth in the liver measuring 2.5cm.
He has advised that he will no longer prescribe me palbociclib as he has proven that it is no longer effective.
He wants me to continue on Letrozole for the timebeing. I can also have a Denosumab injection in the next day or so.
He has in mind everolimus for the next treatment or a possible clinical trial.
In the meantime, I have asked for a copy of my latest CT and MRI scan reports.
I asked about Genomic testing and he said it was a waste of time for advanced cancer .....
I’m very upset and frightened of the future at the moment but will try and take one day at a time.
Any advice etc would be welcome.
Jo xx
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Sunnydrinking
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I'm so sorry to hear your news. Sending a virtual hug!
How does your oncologist know that it is Ibrance that was not working as opposed to Letrozole?
I have a great team at the University of Vermont Medical Center and the Dana Farber Cancer Institute . My oncologist in VT never mentioned genomic testing but when I met with my oncologist at DF she insisted on it and shared the results with my oncologist in VT. The test has given us crucial information regarding future treatment. I was on Ibrance and Letrozole for 18 months and then I developed a mutation that is resistant to endocrine therapy (so it stopped working), we would not have known this if I had not been tested. If I were you I would insist on genomic testing!
The report said that AI's and Fulvestrant wouldn't work for me. I'm currently on Fulvestrant and just found out I have some suspicious spots on my liver. Waiting to hear from my oncologists regarding next steps.
Jo I know how you’re feeling...this was me in January...I stopped Ibrance and letrazole and started Afinitor and exemastane which didn’t work either and more liver mets and a pleural effusion appeared...I’m now on faslodex
I’m confused as to why you’re still on letrazole as I asked my oncologist how she knew which drug had stopped working and she told me that she always changes both as it’s impossible to know
I felt dreadful when I was taken off my familiar regime as it had been working and I kind of felt safe and trusted it...now it’s the unknown again and I feel I have no future and nothing to look forward to
I’m waiting for the results of my genomic test...my oncologist wasn’t too keen about it but I just paid privately for it....I maybe have wasted my money but I want to explore everything and it’s my decision
As you can imagine, my head is spinning at the moment.
I pushed for my Denosumab injection that I’ve just had.
He said just stay on letrozole for now and best not to start any new drugs for now in view of possible side effects during COVID.... Every time I have any consultation with this oncologist I sense budget constraints.... He even said today it would not be fair on the tax payer if he continued to prescribe palbociclib when he had proven is was no longer effective. Guess letrozole is ok as its cheap! Hope he realised how much tax I’ve also paid in my lifetime!
What a thing to say...what’s the taxpayer got to do with it that you’re stopping...you’re not taking it now because it’s not working...honestly some oncologists are so hurtful
How does he know letrazole will still be working?...I would have a telephone conversation and ask what the next plan is...I wouldn’t be happy with this
I think Covid is being used as an excuse for lots of things...nothing has changed for me re coke of drugs injections bloods etc...I still go to the same hospital etc
I hope you get some positive results from the genomic testing. Hopefully you will find out about future treatments that might be suitable for you. That's what I wanted to know. There is something very comforting about knowing there is a plan B just ahead if needed.
Hi Jo, that happened to me last August. Letrazole is first line and there are many other options available. I went onto afinitor and exemastane like Barbara I then had a clinical trial with cabaziltaxol and then xeloda. Most of these work well for most people - I’ve just been unlucky.
I’m having a liver biopsy next week to determine whether the nature of the cancer has changed and my next treatment will be based on what they find. I’m not writing this to scare you just to let you know there are still loads of options.
And I have the same feeling about budget constraints when I see my consultant.
My advice is to go in prepared, loads of good advice on here about alternatives and next steps, and be prepared to have an active discussion if you feel that you are being fobbed off.
Hi Jo,
I am not only upset by your news, but the callous attitude of your oncologist! I hardly know where to begin. First of all, just because we have metastatic disease does not mean that genomic testing is a waste of time. That comment really hit a nerve. I had genomic testing done in January on the NHS. When I mentioned it to my oncologist she immediately put the referral through for me and I had it done. I found out that I have the PIK3CA mutation, which piqray (alpelisib) targets. I would not have known that if I had not had the test done. It can help map the way for future treatments. It isn't a waste of time. Our lives are very important! I think he needs to be reminded of that.
It was also uncalled for to make a comment about dropping one of your drugs because of budget constraints. You are not a drain on taxpayers; none of us are. We did not ask for this diagnosis. The least we deserve is to be treated with respect and dignity, and given every possible chance to live. I would have had words to say to anyone who said that to me! I wish I could give you a hug.
Please let us know what the next step will be. I will be thinking of you.
Sophie
Oh Jo, something you don’t want to hear. The positive thing is there are so many treatments out there. Let’s all be hopeful. Take care and I won’t say don’t worry. Easier said than done.
I guess with widespread meds, I’ve done well to get nearly two years out of palbociclib. Right now I’m battered but tomorrow is another day! I won’t leave any stone unturned.
I’ve had lots of messages from family and friends saying “you can beat this” - no I can’t, unless there is a miracle, but hopefully it can be treated as long as possible whilst maintaining a good quality of life.
I agree with the posts above - you should question remaining on letrozole, and you should have genomic testing to see whether you have germline BRCA mutations and/or a PI3K mutation. It's also possible you may have an ESR1 mutation, which is a sign of acquired resistance to Aromatase Inhibitors (in which case Faslodex can be a consideration, or Tamoxifen).
I'm wondering whether you might consider obtaining a professional second opinion, and/or potentially switching to a new oncologist. COVID-19 or not, patients are still receiving therapy, and the pandemic has no bearing on getting a blood test to check for genetic mutations.
Thank you so much for your very informative response.
I’m noting everything... I lost me last husband at the age of 50 to sarcoma ... it all started with a small lump on his arm .... I’m leaving no stone unturned.
I really value life and I’ve always worked so very hard... childless, dedicating possibly too much of my life to working within the financial services industry - Zurich.
I was also told by my Oncologist today not to google...
I responded by saying I was communicating with professional & knowledgeable ladies all over the world in a similar situation ... & I actually found it interesting and stimulating to gain information about my cancer I was doing my absolute best to live with ..
I feel many of his patients just like to sit there and put all their faith in the Oncologist - I can’t help the way I am, perhaps it’s what I went through with my late husband but to me knowledge is key!
Thinking of you and hoping the next treatment plan gives you another long run and then the next ... and don’t let ‘Covid ‘ delay your treatment !
Maybe consider doing the genomic testing privately ...as you say you have worked hard all your life and are worth it ! Keep going ! Sending a virtual hug x
I couldn't stop laughing with the fact your onc told you not to google! I have learned so much from this forum about new and different treatments. I don't think these onc's are always up-to-date as they should be because they are treating so many other patients not particular to our group. Take heed to what "Best Bird" is advising. She has many many years in this area. I think Letrozole is their cheap safe haven for when they haven't come up with a new treatment. I have been kept on Letrozole for over 5 years and with every treatment, including my latest which is Piqray and Faslodex, they just leave me on Letrozole.
Sunnydrinking, over the years I've observed that patients who advocate for themselves tend to fare a bit better than one might expect! Knowledge is certainly power, and in the context of MBC, it may even be life-extending while potentially improving quality of life.
If you may be interested in learning about approved treatments, cutting edge research, finding clinical trials and more, you may be interested in my book, "The Insider's Guide to Metyastatic Breast Cancer" which is also available as a complimentary .pdf. For info, please visit insidersguidembc.com/about
I'm sorry that you are having progression. I encourage you to get the genomic testing.
I just transitioned from Ibrance to Piqray. I found a Piqray group on Facebook. 500 members. It is very encouraging. Women are having good scan results and sharing about the side effects. There is even one woman who has been on Piqray for 4 years, she was in the original trial.
So, have faith, there are other good options out there.
I had a liver biopsy to determine if my breast cancer had changed. It had remained highly oestrogen positive. I also did the genomic testing and found that I have the ESR1 mutation which makes me resistant to hormone treatment- although it is very typical that we become resistant to all the treatments. I started my journey on Letrozole and Palbociclib and then switched to AC chemo as I had significant progression in my liver. The chemo worked and I am now on exemestane alone. If I have progression on this she will add Everolimus. Stay positive as there are still lots of treatments ahead for you. X
Hi. The exemestane didn’t work on me. Was only on it a couple of weeks and then she added Everolimus. The combination didn’t work as I am
Hormone resistant. I then went on to Abraxane chemo and now on 7th cycle of Xeloda. I don’t have many options left due to significant liver fibrosis/ scarring.
Oh Sunny! I'm truly sorry. I had a liver biopsy yesterday at MD Anderson...one of the leading cancer centers in the US. My oncologist insisted on a biopsy and genomic study....even after I had had the liquid biopsy at home. She said tissue biopsies are much better.
I have been on Ibrance and exemestane since February of 2019. If I have remained er+, I am expecting her to change me to everolimus. If triple negative, Xeloda. Whatever the result this morning, I will post.
Maybe a new doctor is in order. I'm on my 4th. I lost my first 2 to retirement, was assigned the 3rd and sought out the 4th. She has taught me more about breast cancer in 2 visits than everything the other 3 have told me in 10 years.
Find something comforting to do to help you over the shock. This damn beast is relentless and an assault on our bodies everyday.
Hi Jo! Greetings from over the pond in NJ! When Letrozole stopped working for me I went on everolimus (Afinitor is brand name here in US). It shrank my liver and bone Mets alot!!! It was not a clinical trial here. Our FDA already approved it. It worked great for about a year. Now I just changed treatments from it. I guess what I am trying to say is you still have other options and if you do use afinitor it could work for you too! As for the genome testing... I had inhouse testing done when dx in Oct 2017. Recently when I saw meds need to change I asked my onc about having it done again by the Foundation which is a big group here in the states. So.... due to covid she said let's try my new drug first which seems to be the next path for ppl like me who just finished afinitor. If new drug does not work then she will do the foundation testing. It has to be approved by insurance of course. Another reason she decided to delay testing is due to covid. She prefers I do not do an invasive biopsy (liver) where I need to be in the hospital. Her words made sense. Hope this helps. Keep positive. Oh and one more thing...and please dont take offense to this - is a certified jerk for saying the testing is a waste for advanced cancer. He/She needs to go back to school. Sorry to say this, but cant help myself this morning. Faith
Oh honey , i would always get a second opinion as far as meds go.My cousin got put on different chemo and the liver spots disappeared..Even if you had gene testing it won't help they have already tested the gene causing the stage 4.. Take your cat scans and MRI and just get different eyes . A different place..most doctors understand.Are you any where near Boston..?
Sending you love. Hopefully your next treatment will do wonders. There are still lots of options and more coming through all the time. Hang on in there.
How realistic is it for you to change oncologists? Or at least get a second opinion evaluation from a bc specialist onc? You are in Zurich? I wish I knew where to suggest, though I do know that at least some solid research is being done in Germany. That statement about being a waste of time would make me change oncs! But I live close enough to a city big enough to have varied resources. And I do agree with others who have suggested genetic testing, specifically for factors that can rule out treatment that won't work with your very individual group of cancer cells. I'm a long timer with mbc (16 1/4 years) and went to training as a bc advocate about 13-14 years ago. One of the good thing I learned about liver mets is how resilient our livers are and that a number of metsters have been in the hospital with a failing liver and treatment has been changed to something that does work and they have gone from being near death to feeling quite well and living several more years. I hope you find a path that gives you peace as you live with this lousy rotten cancer!
So sorry for this scary and troubling news. Take care and try to be gentle with yourself. Limbo is the hard stage... when you get this treatment determined you will have the path forward. ((Hug)) cindi
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