I have just had my scan result and after more than 2.5 years being stable with spread to the bone, I now have a dark area in the liver and some tiny lung nodules have grown a little bit. I have been on Ibrance and Letrozole with Denusomab injections, which I have found quite easy to take, so I am upset that this will now probably be coming to an end soon. I know I have been very lucky to have been on this so long. I will be having an MRI to check the liver. Any similar experiences and what came next?
Thanks
Jackie
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I'm so sorry to hear this news but there are options! I was on the same meds for 18 months (started March 2018) then had slight progression in my bones. I switched to Faslodex, which in hindsight I wish that I had waited until I had my blood biopsy, which indicated that I had developed the ESR1 mutation. I stayed on Faslodex (9 months), until I was able to enroll in a clinical trial that is "customized" for patients who have the ESR1 mutation. I am currently doing well (my tumor markers have dropped quite a bit) and will have scans later this month.
You may want to talk to your oncologist about a blood biopsy, I used Guardant 360. Wishing you all the best!
Thanks Jade. I am in the UK on the NHS so I don’t think the blood biopsy will be available to me, but it’s great you are doing well and hope that continues.
There are currently four trials that I know of that target this mutation. The Emerald and ELAINE trials are phase 3 and Protocol # 17-371 and EMBER trials are phase 1. I participate in the EMBER trial. I was not eligible for the other trials as I am not post menopausal. The medication is a super SERD called LY3484356.
Hi Jackie. I am in a similar situation where my lung nodules and lymphnodes showed some progression on Ibrance/Letrozole. I was quite unnerved by that news, but everyone here reassured me there are many more options after failing if Ibrance.
In my case it was decided to stay on Ibrance till my next scan in November and then decide which change of treatment will be suitable for me.
I just read Jade's response and also will request a blood biopsy, which I never had done.
I hope any new treatment you'll receive will prove very successful 🙏
Hi Anja, thanks for replying. I am hopeful about future options but will be sad to give up Ibrance. My onc doesn’t want to rush into a change of medication either, so depending on the MRI results I might be on it a few more months. She did say that sometimes ladies stabilise on it again for a while. Hope things go well for you.
I think that's a good suggestion. If I had minor progression on my next scans I had already decided to ask my consultant if this was an option. As I'm managing kadcyla so well
I am sorry to hear that a treatment change may be warranted, and below is a list of non-chemo therapies approved in the UK to the best of my knowledge. The excerpt is from my book. "The Insider's Guide to Metastatic Breast Cancer" which is also available as a complimentary .pdf. For more info, please visit insidersguidembc.com/about
I hope your next treatment works beautifully!
FOR POSTMENOPAUSAL MBC PATIENTS GOVERNED BY NICE GUIDELINES:
First Line Hormonal and Targeted Treatment Options as per NICE Guidelines for Postmenopausal Patients:
•An Aromatase Inhibitor (Letrozole, Arimidex, or Aromasin) alone, or with a CDK4/6 inhibitor (Ibrance, Kisqali, or Verzenio)
•Tamoxifen (for men with MBC)
Second Line Hormonal and Targeted Treatment Options as per NICE Guidelines for Postmenopausal Patients:
•An Aromatase Inhibitor (Letrozole, Arimidex, or Aromasin) alone if the patient had previously received tamoxifen or chemotherapy
•Afinitor and Aromasin (for women without symptomatic visceral disease that has progressed after a non-steroidal aromatase inhibitor [Letrozole or Arimidex])
•Verzenio and Faslodex (for women without symptomatic visceral disease that has progressed after a non-steroidal aromatase inhibitor [Letrozole or Arimidex])
•Ibrance and Faslodex after prior endocrine therapy
•Kisqali and Faslodex after prior endocrine therapy
I bought that book but haven't delved into it as Ibrance and letrozole working well st present, am on fifth month with monthly improvement. Looks like it could be useful later. I imagine this initial improvement will only go so far and for so long! I'm full of hope but a realist too. Carolyn
Taxotere is a standard chemo that can be given irrespective of HR and HER2 status.
In addition to systemic therapies, there are specific liver-directed therapies such as Y-90 radioembolization that you can read about in my book, "The Insider's Guide to Metastatic Breast cancer" which is also available as a complimentary .pdf. For information, please visit insidersguidembc.com
Hi Jackie the same happened to me 2 months ago. I had one bone met for two years on Ibrance and Letrozole then a scan showed progression to liver 3 spots, and several new bone mets. I started xeloda and my tumour markers dropped significantly. I asked to be kept on Letrozole as it apparently boosts xeloda. I am in my 3rd two week run with it and as terrifying as it was changing medication (I loved Ibrance) I have not had any side effects other than stomachache in the first two weeks. Nothing since. Hopefully you’ll be the same x
Like the other replies, I went on to Faslodex with abemociclib. Waiting to see how it works. Letrazole only worked in a limited way for me on bones and lymph nodes - my oncologist hopes the above will stop my liver mets from growing. The first couple of weeks of the new drugs, I felt tired and emotional - however things have now improved and I feel good again.
When I was diagnosed, with bone mets from the get go, way back in 2004, an AI was "standard of care" for post-menopausal women with an estrogen positive cancer. I got almost five years on that and when I had progression, we watched it a while and then I was switched to Faslodex. One thing I really liked about Faslodex was that it was not a daily pill, which was always a reminder that I had MBC! I found it easy to be on. One of the things I realized early on in this crazy cancer journey was that I would be getting alot of needle pokes. I'd had a bad experience when I was younger with an IV infiltrating, and that had left me a bit PTSD-ish about needles so I made a point of working hard (in my head!) to overcome that and "make friends" with needles. I think if I can do that, anybody can! lol Needles really are for our own good and we do encounter alot of them. I've met quite a number of women who have gotten more time on Faslodex than they did on an initial AI and you have reasons to be hopeful. I hope those blips on your scans prove to be nothing cancer related. If your onc hasn't looked at the actual scans and just relied on the radiologist's report, ask the onc to examine the scans themselves. My onc and I discovered that some of my scan reports mentioned possible cancer spread where my onc saw nothing. I hope you do well--please keep us posted!
Thank you so much. I do like the sound of Faslodex, hope it's that next! I am a tough copy but my blood tests are always painful and I usually have at least 2 or 3 as I can only use my right arm where the veins are awful- it usually has to be my hand which ends up black and blue! Hope you are doing well, thanks for replying x
I asked my oncologist in 2007 to keep my port a cath for these same reasons. 14 years later I still have it and needle sticks are not a problem. (original diagnosis BC in 2006, MBC in 2017) I do not have a power port because it was inserted before they were "a thing" so I do have issues when scans are needed. My team has scheduled the "ultrasound" IV team for those appointments and it has made a big difference. Good luck and God bless everyone.
Thank you. I'm not really sure it's anything I'm doing! Nothing extraordinary, just taking my meds and keeping appts. I am tired most of the time and my short term memory is full of holes! But I still enjoy alot of the things I've always enjoyed, like my family, baking and cuddling with our dogs and cats! My family seems to carry a gene that allows us to do well with cancer. It doesn't prevent us from getting it but there are quite a few of us who have done very very well with assorted cancers, breast cancer, endometrial cancer and colon cancer. My paternal grandmother was treated for advanced endometrial cancer in the 1950's when she was in her 70's and it was "cured", never came back and she lived to be 102! Amazing!
So sorry for your news. I feel like all of us will reach a point where are present treatment will stop working. I am always assured that there are many options.
I pray that you will have good results from your treatment change and that it will be easily tolerated.
Hi there. I am still on my first line of treatment, but fully aware I will be in the same situation soon. The others here can offer great encouragement as the next stage of the journey can sometimes be a better one, or at least as good as. I wish you news of some sort quickly so you can settle your thoughts.
I had been on Ibrance/Letrozole combo since October 2017 when mild progression occurred on both sides of iliac in August 2020, so about same progression-free stretch as you. I’m pretty sure that length of time is around the statistical average for this treatment.
Like you, I felt so disheartened by the news. We just have to remain hopeful about next line treatments. My oncologist told me there were plenty in her arsenal. My new protocol is a monthly shot of Faslodex. So far, I am not noticing side effects and have found the injection just a wee bit uncomfortable with no physical after effects whatsoever. Have you been assigned a new protocol yet?
Yes, I knew it had to be coming soon. My onc will discuss treatment after I have had an MRI. I have heard good things about Faslodex so I hope that will be considered. I am in the UK and don't have access to everything US ladies do- insurance permitting- but I keep hearing about new drugs heading our way so fingers crossed!
I just had a meeting with another doc for advice/comparison to my current doc. There was a recent scan that showed some progression, not enough to change meds yet (Ibrance and Faslodex). And she made me feel better by saying how sometimes things light up and they end up not being progression after all. There's also the possibility of a mysterious "shadow" ending up being nothing. Think positively and hopefully that's your case here.
Thanks for replying- I’m sure that happens but I also have 2 small lung nodules which have grown a bit so I feel the two together probably do mean there is progression in my case. Fingers crossed we will both do well on our next treatment when it happens.
Hi Jackie, I am Bonnie and live outside of D.C. Where do you live? What is your latest? I also have mets in liver and bones. I currently am on Ibrance, xgeva and faslodex. My scans today showed some growth of liver and bone tumors. Some just starting in clavicle and cervical spine. tomorrow I see my doc and will see what she suggests. Never know with me what I will agree to! I hope you feel better.
Nice to meet you! I live in Kent in the UK. My mets began in the bone, mostly sternum, some in spine and collarbone, now I have a small nodule in the liver and several tiny ones in the lungs. My oncologist found the new ones to be slow- growing so I am still on my first line of treatment, Ibrance, Letrozole and Denusomab, as she didn’t want to switch me too quickly. She also wants to get me on a trial for Ibrance and Faslodex but one of my mets needs to be bigger to qualify! I am due a CAT scan and MRI this month so I expect there will be changes after this. If I don’t get on the trial she thinks it will be Exemastane and Everolimus.
I am being treated on the NHS here so don’t have as many options as the US- but fabulous care anyway.
Hope your doctor comes up with a good plan that will work well for you.
thanks for your response. It is important and helpful to me to be in contact with other ladies that have a similar staging, etc. as I do and are doing well. Let us stay in touch. I am heading to onco this afternoon for whatever she feels is the next step. UGH!
It is scary but I think several ladies on here have done well on this drug and have felt better than on some of the other treatments. Also I think it is good to have a port if you are like me and have terrible veins- every month when I have my pre-treatment blood test there is a struggle.
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