Ibrance and estrogen level

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thereishope4us
thereishope4us Member Posts: 74
edited January 2018 in Stage IV/Metastatic Breast Cancer ONLY

Hi there!

I am quite new to the site. I have been diagnosed with liver, lung and bone Mets. Initially diagnosed in 2011 at stage 2. My doctor wants me start on Ibrance, however, I am not yet menopausal. My estrogen level is low, but not quite at menopause. I am 41. I had one shot of zoladex on dec 7 and will continue to get the monthly shot.

My oncologist says I can’t start on Ibrance until the estrogen level shows I am menopausal. She recommends that I get my ovaries removed. A second opinion by a more experienced doctor says doesn’t matter, my level is low enough as I am no longer gettting periods.

Wondering if anyone has any thoughts or experience with this

Thanks

Thereishope4u

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Comments

  • TarheelMichelle
    TarheelMichelle Member Posts: 871
    edited December 2017

    Why doesn’t your oncologist start you out on Tamoxifen, so you won’t need an additional surgery? It just seems unnecessary. I had stable mets with Tamoxifen and side effects were minimal.

    Best wishes for many good years ahead.

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  • Lucia42
    Lucia42 Member Posts: 63
    edited December 2017

    Hi, I was 42 at diagnosis and also premenopausal but my onc started me on injections to shut down my ovaries and Ibrance simultaneously, and so far it's working.


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  • Ashlyn
    Ashlyn Member Posts: 141
    edited December 2017

    I was in a simila boat in July... initially Dx in 2012 stage2b and now lung mets as of July at age 34. Started Zoladex for the second time right away. Asked about removing ovaries and my oncologist didn't think it was necessary right away... she didn't want me having to wait for the surgery as well as go through the recovery of it at this time.

    Waiting to start on Ibrance was difficult as I just wanted to be on it ASAP. I had to start Letrozole first because my MO said Ibrance needed that first to work. I ended up with some complications and had to have radiation before Ibrance but was on the Letrozole two months after Zoladex seemed to be working (no period and estrogen levels confirmed I was menopausal)

    Part of me did wonder about whether to just have the surgery but I also knew that that would delay things... I ended up with a delay anyway. But I'm at peace with holding off on removing my ovaries.

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  • pajim
    pajim Member Posts: 2,785
    edited December 2017

    If you're on Zoladex or Lupron, that's the same as having your ovaries out. Scientifically equivalent. So if you've started the shots and you're not having your period, you are eligible for Ibrance.

    If your doc wants to wait for the second shot I guess so, but you should take tamoxifen or letrozole in the meantime.

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  • thereishope4us
    thereishope4us Member Posts: 74
    edited December 2017

    Thanks so much for your comments.

    I have been on Tamoxifen since 2012. It failed me :(. The doctor wanted me to stop the Tamoxifen. Not sure why. I didn’t see the harm of continuing taking it although it may not be helping much. So I am basically taking nothing right now. My oncologist wanted me to start with Ibrance first and add letrozole when I can, which doesn’t quite make sense to me. I feel like I have to be my own doctor. But it helps now through you ladies that I know I don’t Necessarily need to remove my ovaries before starting the meds.

    Are you ladies on Ibrance and letrozole together? Have you had any experience of taking them separately? I see Ashlyn took letrozole first. Is that a more common approach?

    Thanks

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  • Ashlyn
    Ashlyn Member Posts: 141
    edited December 2017

    My understanding was that Ibrance won't work without Letrozole or equivalent. Strange that your MO wants you to start it after Ibrance.

    I guess it depends on the doctor. I have noticed other premenopausal ladies starting the three drug combo right away. And other cases having to wait for the drugs to kick in. Waiting isn't easy.

    I would ask about starting Letrozole.

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  • thereishope4us
    thereishope4us Member Posts: 74
    edited December 2017

    thanks for your reply Ashlyn. Were you confirmed menopausal when you started Letrozole? My doctor won’t let me start on it until the blood work confirms menopause. How are you doing now in terms of the effectivess of the treatments and how well were you able to tolerate the drugs?

    Thanks

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  • Ashlyn
    Ashlyn Member Posts: 141
    edited December 2017

    Yes I was confirmed menopausal. I think I started Letrozole two months after starting Zoladex. It felt like a long wait and I actually think I could have started sooner but I was on holiday and also had to have a second biopsy and my oncologist wanted to wait until I'd done that before adding another drug in. My period didn't come during that time at all so I probably could have started sooner. Have you had your bloodwork done yet to check estrogen levels?

    I've tolerated Letrozole fine. Was on it previously for a year and a half as well. Joint pain and hot flashes mainly.

    I'm almost done my second cycle of Ibrance and feeling not too bad. I have had the usual side effects that are expected on it. (Neutropenia, mouth sores because of that, fatigue) I will say that it is nothing like chemo. I know everyone reacts differently but I am managing on this drug combo and most women seem to do well on it from what I am observing.

    There is an Ibrance thread you might want to check out once you start. Lots of tips and other ladies' experiences over there. The good news posts always keep me hopeful!

    I have yet to do a scan since starting Ibrance. Sounds like it usually takes 3-4 Ibrance cycles for any improvement to be noticeable.


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  • thereishope4us
    thereishope4us Member Posts: 74
    edited December 2017

    thanks Ashlyn, let’s stay connected. You seem to have been diagnosed around the same time I did the first time and now with lung mets. My is on the lining of the lungs with quite a number of nodules in both lungs.

    Thanks for your tips on Ibrance. Hope we both do well on it. Really hoping that there is still quality life ahead with cancer.

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  • Ashlyn
    Ashlyn Member Posts: 141
    edited December 2017

    ThereisHope4Us... Your name says it all.

    Wishing you all the best. I'll see you over on the Ibrance thread...

    Ash

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  • singlemom1
    singlemom1 Member Posts: 434
    edited January 2018

    My doctor recommended removal of my ovaries to be sure I was in complete menapause. I had chemo a few years earlier and that seemed to stop my period except for a couple of times a year i would still get it. I had also been on tamoxifen when I got the reoccurance so that was done. I was able to start Letrazole and then Ibrance one week later.

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  • thereishope4us
    thereishope4us Member Posts: 74
    edited January 2018

    Hi singlemom1,

    Thanks so much for your reply. That’s very helpful. My doctor is thinking the same too. Did you have any problem starting letrozole right after taking out the ovaries? Wasn’t the side effects of the drug and being menapausal over whealming? That was my fear.

    How are you doing on Ibrance? I also have mets in my lungs and also liver and bones :( just had a ct scan last Friday to see where things are at after diagnosis but not having any treatments yet.



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  • JFL
    JFL Member Posts: 1,947
    edited January 2018

    I was dx'd at 38, with very high estrogen levels at the time and opted to have my ovaries out. My OB-GYN did it while I had a C-section so I did not require an additional surgery. It is really a personal decision. I was in very bad shape when diagnosed and just needed to get started with treatment right away. My MO put me on Aromasin and Faslodex (and added Ibrance months later when it was FDA approved). He said he added the Faslodex to address the circulating estrogen in my body that doesn't go away right away. I started Aromasin and Faslodex immediately after the surgery - the next morning. Odd your MO wants you to do Ibrance alone. It doesn't have single agent activity and seems it would be better to add the letrozole now even if it takes some time to work 100%. The sudden drop in estrogen was fine for me (and going from being pregnant one day to zero estrogen the next was a big jump). I had a very tough time on Tamoxifen and find the other hormone therapies easier. The biggest side effect was joint pain and my MO prescribed Cymbalta for that.

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  • thereishope4us
    thereishope4us Member Posts: 74
    edited January 2018

    thanks JFL! I have an appt with my onc tomorrow and will see where my estrogen level is at. I see that you had chemo therapy after Ibrance as well. Was it because Ibrance had failed? Wondering what the course of action would be after Ibrance. Seems like we have the same type of cancer. ER+, PR- HER2

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  • singlemom1
    singlemom1 Member Posts: 434
    edited January 2018

    Thereishope- I started Letrazole pretty quickly after the surgery. Maybe about 1 week later and then added the ibrance a week after that. My estrogen was very low prior to the surgery, but I really didn't have major problems with going completely menapausal. I get hot flashes at night, joint pain and mental fogginess. Not sure if that is the menapause, Letrazole, Ibrance and/or stress. Probably all of the above. I am doing well on Ibrance. Fatigue is the biggest SE for me, but it is manageable. I think we are fortunate that this treatment is available to us! I hope you find it tolerable and have an excellent response!

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