Hello

[Bella_mum]

Hi everyone,

I've been Stage IV mbc since December 2019, on Ibrance / Letrozole but now facing a change. Those drugs (with some off label drugs and naturopathic treatments/supplements) kept me stable for nearly 4 years. Now some update on my left femur, sternum and new tumors in my liver.

Curious to hear from others who moved on after a good length of time on their first line of treatment, the uptake/new mets came as a shock so feeling very jittery about what's to come.

love to all, Lauren x

[Aprilfoolz1]

Lauren , I haven't experienced this yet but I my oncologist has shared with me a basic plan for when and if this happens (I started Ibrance and fulvestrant 11//2019). I'm sorry you have progression . Have you and any biopsies on the new mets to check for mutations such as ERS1 or Pik3ca ? A new biopsy will also check if your cancer is still er/pr + and the her2 status to help make the best plan to kick the cancer back to nothing .

Let us know what the next step will be ! We are here for you .

[Bella_mum in reply to Aprilfoolz1]

Thank you! I’m fighting to get a biopsy of the new liver tumors as it could well have mutated to a different cancer and I want checked for Pik3ca and honestly it was 18 years ago they took the first treatment so those tumours aren’t good for anything now. Next oncology appointment next week, 🤞🤞🤞

[Aprilfoolz1 in reply to Bella_mum]

Fingers crossed for sure that they order a biopsy. You need to know why the cancer is no longer held back by ibrance and letrozole. Keep us posted! There was a very informative post a few months back with a YouTube video discussion on current stage IV treatments by Dana Farber Cancer Ctr (Boston ) and they covered what treatment they will switch to and what to expect after cdk/4-6 stops working . If I can find the link I'll post it for you .

[RedwoodLady in reply to Aprilfoolz1]

I would be interested in that, also

[Hopeful4Cure in reply to RedwoodLady]

Me three as well Thank you for taking the time. We appreciate it. Quite helpful.

[Bella_mum in reply to Bella_mum]

Hi! just waiting for results of testing for PIC3CA mutation and if positive will be going on clinical trial, oncologist here (Canada) hasn't heard of ERS1 (facepalm) but that doesn't surprise me.

[Bella_mum]

thank you!!

[Aprilfoolz1]

youtu.be/sBMbmnRdZ74?si=t2h...(Not working as expected?)

[Aprilfoolz1 in reply to Aprilfoolz1]

RedwoodLady here is the Dana Farber video

[Gingerann1 in reply to Aprilfoolz1]

Thank you for providing this. I just watched it and the information made me feel so much better in where things are moving with MBC as opposed to BC, particularly the way it was divided into the 3 types (ER+, HER2+ and triple neg.) so that you had more information about the type you are dealing with. Worth taking the time to get a better understanding about current therapy combinations and what is on the horizon. Thanks again!

[Aprilfoolz1 in reply to Gingerann1]

Thanks to HelenWi for posting this last year. I found it very helpful and comforting. We live such a surreal life - furiously living while on these medications - so thankful for the medication and research for new and better treatments for all of us .

[CTGirl1962 in reply to Aprilfoolz1]

Thank you for this!!! 🩷🩷🩷

[Aprilfoolz1]

I just posted the Dana Farber video

[Bella_mum in reply to Aprilfoolz1]

Thank you so much !

[Nocillo]

Not to worry too much! My first line lasted for 6 1/2 years. My second line was 2 1/2 years. I’m now on my third line for 6 months. There are many options for us these days. I hope you have many more years! 🙏

[Bella_mum in reply to Nocillo]

Hi!

Thanks for your message, could you share what your second line of treatment was?

Thanks

[Nocillo in reply to Bella_mum]

My second line was Ibrance and Tamoxifen. Now I’m on Verzenio and Letrozole.

[Catali02 in reply to Nocillo]

hello,

I am sorry if I missed it but what was your first line for 6.5years? Congratulations on such a long run on all your lines!

[Nocillo in reply to Catali02]

Anastrozole and Fulvestrant, worked so well!

[NShaft]

You should be able to get a liquid biopsy, which is just a blood draw. It will determine if you have any mutations and direct your next treatment. I was on the Ibrance combo for 4 years also and now on Orserdu which was approved in January for the ESR 1 mutation. Wishing you the best.

[Bella_mum in reply to NShaft]

Thank you !

[kellylinkane in reply to NShaft]

how orsedu workfor you？ i think my next line of treatment maybe orsedu i have ESR1 mutation

[NShaft in reply to kellylinkane]

So far so good. Mostly stable.

[kellylinkane in reply to NShaft]

thank you!! I feels hopeful!!

[Bella_mum in reply to NShaft]

Waiting for results from liquid biopsy for PIC3CA mutation, my oncologist knows nothing about ESR1 🤷 - but i'm in Canada so maybe it's just not on the radar here yet.

[Totheriver]

I have been on those drugs for 41/2 years and found out Jan.2 that 2 tumours in my spine are growing. I did 5 rounds of radiation and she is keeping me on same drugs till we see what my scans show in March and then see what happens. I am nervous about changing drugs. Theresa

[Bella_mum in reply to Totheriver]

Thanks Theresa, will be hoping for good scans for you in March!

[Totheriver]

Hope things go well for you but can understand you are nervous 💕

[ba5083]

Sorry that you are having to switch up your next line of defense. Although 4 years is a good run it would be nice if it would continue. Would you mind sharing the off label medications/supplements you might be taking. I am taking some as well and would like to compare notes...If you are comfortable in sharing. (ILC ER/PR+ HER2-)

[PJBinMI]

Dear Lauren,

I remember when my first treatment (Letrozole) stopped working! Not a fun time. But I've become a long timer (20 years on 3/1/24) and it feels alot different now. I got almost 5 years from Letrozole, then over 9 Years from Fulvestrant, and about five years from Exemestane. Last year, the crazy cancer cells stopped being E+ and became triple negative so I'm now on my second actual chemotherapy. I've made a point of learning all I can about BC and MBC--reading, attending conferences, etc. When we do well, as you have, with initial treatment, we often do really well for long periods of time, years, not months. I think you have alot to be hopeful about. Seeing a bc specialist onc at a major cancer center for second opinions can help, too.

[Bella_mum in reply to PJBinMI]

hello!

Thanks so much for replying, it was a bit of a shock to get the spread after such a good run of 4 years and I’m sure you know where my head went right away 🙈.

All this information is extremely helpful! I will go armed with questions on Thursday and hopefully get my oncologist in a good day 🤞👍🤞👍

Xx

[Aging69]

I was on Ibrance for about 5 years. The last year I developed numerous side effects. I am now on Verzenio and doing much better.

[Bella_mum in reply to Aging69]

Thank you !! Hope it continues well for you 😁

[Timtam56]

hi Bella Mum.

If you have a look at my profile, you’ll see that I’ve put up some posts recently where I was going through a very similar thing to you.

In fairness to everybody else here, I won’t repeat the whole lot. But maybe you want to have a look at where I’m at.

And I just need to say that I was very very scared of going onto the trial, which would have given me a chance of either piqray/ Alpelisib or Capecitabine/Xeloda. I got Piqray. To start with it was pretty tough. Also the trial took up a lot of my time and still does a little bit.

But I’m feeling fantastic except for some mouth issues. Also I was very scared of the fact that I would get drug induced diabetes on this drug …..and I did. It happened to me. But it’s not nearly as bad as I thought. Of course, we are all different. I have the Pik3CA gene. I’m interested int alternate therapies, but more important to me is feeling my best for the time I have left.

[Bella_mum in reply to Timtam56]

Thank you!

I’m really hoping for tumour testing but it’s not guaranteed they’ll do it here. I’ll check you r profile for more info, I just finished watching the Dana Faber video, so much to unravel as to what’s relevant as there are so many variants but I’m hoping to go to my next consult armed with the right questions now there’s progression I need to get my shit together !!!!!

Appreciate your help, thanks 🙏🏻