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Lupron plus AI

I gave chosen to go the aggressive route of monthly lupron shots plus an AI rather than tamoxifen. I was 38 at diagnosis and 39 now. I have just read that it is possible to have incomplete ovarian suppression which would make my estrogen levels too high for the AI. Anyone else doing this course concerned? My MO says she is confident the shots are working since i don't get my period but now i am worried. There are times i have vaginal discharge and i am concerned that is a bad sign that the shots aren't fully working

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Comments

  • Logang
    Logang Member Posts: 144
    edited December 2016

    I was diagnosed right after my 39th birthday. I am 40 now. I have been getting Zoladex injections and taking arosmasin. I have had no periods. I got 3 monthly zoladex injections prior to starting aromasin.

  • Michelle_in_cornland
    Michelle_in_cornland Member Posts: 1,233
    edited December 2016

    Your doctor can test your hormone levels.

  • tarheelmichelle
    tarheelmichelle Member Posts: 248
    edited December 2016

    Kathy, Tamoxifen is not just a preventive. It is an effective cancer treatment. I know, because I'm Stage IV, and I was treated with it. It worked well, and I had very few side effects.

    If you are concerned about Lupron's efficacy, it might be worth re-considering Tamoxifen as a preventive. By taking an AI now, you are taking away a drug that could be used later, post-menopause, not just as a preventive, but as a treatment, should you have a recurrence.

    I am aware of studies that weigh effectiveness of AI versus Tamoxifen as a preventive. The side effects of AI are much harder than Tamox. I frequently praise Tamoxifen in discussions here -- because I was so wrong about it in the beginning. I wasscared of it after my Stage I diagnosis and refused to take it. (I wish that I would have just tried it.)

    I wish you the best of health.

  • KathyL624
    KathyL624 Member Posts: 47
    edited December 2016

    I did start with tamoxifen and stayed on it the first few months of my lupron shots. The switch to an AI came for two reasons: i need an antidepressant and the ones that are ok to take with tamoxifen don't work for me and two, i want to be as aggressive with my treatment as possible and the SOFT study showed a clear benefit to OS plus an AI for younger women. I am just nervous after reading some caveats about incomplete ovarian suppression and am second guessing whether i am in fact following the best course. Was wondering if anyone else folliwkng the SOFT protocol has similar concerns or has spoken to their doctors anout this issue

  • elainetherese
    elainetherese Member Posts: 1,620
    edited December 2016

    I'm doing Zoladex and Aromasin. My side effects are negligible, and I'm pretty close to menopause anyways (diagnosed at 46, now 49 -- average age of menopause: 51). I guess I don't worry much about whether they are working. I was still getting my period during the first two months of chemo; I don't get it now.

    TarheelMichelle,

    There are three different AIs that work slightly differently from one another. Should I recur, I will still have options. (I'm also HER2+, so there's targeted therapies as well.) In fact, the goal is NOT to recur so that I don't have to worry about future options!

  • KathyL624
    KathyL624 Member Posts: 47
    edited December 2016

    Also I am bothered by the save drugs for later idea. I feel like i need to be aggressive now, it's my shot at a cure. My kids are 8 and 4 and they need me for a ling tine. Willing todo anything it takes.

  • Goodie16
    Goodie16 Member Posts: 297
    edited December 2016

    I tried Lupron in an effort to switch from Tamoxifen to Arimidex. I was struggling with tamoxifen side effects. Unfortunately, after 5 months of injections, my levels never dropped low enough to take an AI. My onc and I discussed this and felt, for me, the best option was to have a total hyster with ovary removal. I had this done in July and my levels were low enough to begin taking Arimidex by September 1st.

    Best of luck to you!

  • KathyL624
    KathyL624 Member Posts: 47
    edited December 2016

    It sounds like I should ask my onc to test my levels. What should I ask for? I am not sure why my onc would not be monitoring this rather than relying on just my lack of period

  • KathyL624
    KathyL624 Member Posts: 47
    edited December 2016

    Goodie16, did your onc automatically monitor your estrogen levels? I am treated at Sloane Kettering and my MO has never questioned whether lupron is working

  • Goodie16
    Goodie16 Member Posts: 297
    edited December 2016

    My onc did monitor my estrogen levels while I was on Lupron as part of my monthly bloodwork. He needed my estrogen levels to be in the menopausal range in order to begin treating me with an AI instead of tamoxifen. The 2 blood tests that were done were: Estradiol and FSH.

    I was 52 and my onc was surprised neither level indicated that I was in menopause, so that's when we decided to start Lupron. As I said, my levels were drawn each month in order to see if I had reached menopausal range yet. My levels dropped on Lupron but not enough and not quickly enough for my onc. That's when we discussed surgical options to stop estrogen productions.

    Hope that helps!

    Carrie

  • cubbie2015
    cubbie2015 Member Posts: 773
    edited December 2016

    I am also on Lupron plus AI (generic Arimidex). My MO checks my estradiol and FSH on a regular basis, about every other visit. My periods stopped right away with the first injection, but it took five months before my hormone levels dropped low enough to start the AI. I would not assume that no period means your estrogen level is low enough. I think you should be tested at least once to confirm that you are responding to the Lupron.

  • KathyL624
    KathyL624 Member Posts: 47
    edited December 2016

    I emailed my MO to ask for the test. I want to continue on the lupron but will switch back to tamoxifen if it hasn't lowered my levels enough. Now I am so stressed

  • Falconer
    Falconer Member Posts: 801
    edited December 2016

    Hello,

    I started my first round of Lupron Depot- the three month extended release- on 11/11/16. I haven't had a period and will be meeting with my MO to go over blood test results next week. However, I must add that while the hot flashes are frustrating, I am suffering from almost debilitating migraines. Headaches were never a problem for me throughout my life; nothing that a few Advil couldn't cure. Now I feel a constant pressure in my head and ringing in my ears. After doing some research I read that other OVF supppressors have fewer side effects. You may want to ask your MO. Hope you find the right treatment.

  • cubbie2015
    cubbie2015 Member Posts: 773
    edited December 2016

    Kathy, don't forget there are other drugs in the same class as Lupron. Even if Lupron isn't working, Zoladex might work for you instead if you still want to take the AI. I forget why I'm on Lupron specifically, but it has something to do with insurance coverage or what research studies showed about monthly injections or something like that. There are other options.

  • Falconer
    Falconer Member Posts: 801
    edited December 2016

    Hi Cubbie- how are you feeling on Lupron? Aside from the usual hot flashes, what else have you noticed

  • tarheelmichelle
    tarheelmichelle Member Posts: 248
    edited December 2016

    Falconer, three oncologists recommended against the 3-month Lupron. At that time, (2012), I researched online and did not see favorable recommendations online. I hope you feel better. Ovarian suppression can be nbd for some women yet create horrible side effects in others. Sorry you are suffering.

    Kathy, I'm also a patient at MSKCC. My estrogen levels have been routinely checked even when not on Lupron. If you have your medical records online you can check your bloodwork any time.

    I understand the "Willing to do whatever it takes," but research is strongly supporting the idea that stronger treatments aren't necessarily better for longevity. We already know that treatment can make cancer more elusive and harder to treat.

    I'm one example of a patient whose tumors are slow-growing. Chemo is not right for me.

    There was research released just this month that strongly indicates that early-stage treatment may not have ANY effect on mets; that mets could pre-date the primary tumor. I just read it today; still trying to get my head around it.

    https://www.sciencedaily.com/releases/2016/12/1612...


  • Falconer
    Falconer Member Posts: 801
    edited December 2016

    Thanks, Tarheel Michelle. I'd researched so much about all the other aspects of BC treatment that when it came time for the hormone therapy I just left it up to my MO (who, btw, has left the practice). Anyway, my new MO is sending me for an MRI this week to check up on the headache issue. I truly believe it's the Lupron and nothing else. I'm hoping that once it is out of my sys I will try Tam and will feel better! Thank you also for the link to the latest research. It

  • Falconer
    Falconer Member Posts: 801
    edited December 2016

    is helpful to have your work here- the work you've done to learn and live with this disease.

  • KathyL624
    KathyL624 Member Posts: 47
    edited December 2016

    Tarheel were you at MSK the first time as a Stage 1 patient? My estrogen levels are not being checked. I doubke checked my labs in the portal.

    I do understand that early stage does not always merit aggresdive treatment which is why I fid not do chemo based on my low oncotype score. But if if I can do an aggressive hormonal treatment I need to give it a shot. You yourself said above that you wished you hadn't refused tamoxifen at first. Maybe in the end it won't make a difference but I do feel I need to give it my all right now while there is a good chance I can keep it from recurring

  • KathyL624
    KathyL624 Member Posts: 47
    edited December 2016

    Falconer..are you taking tamoxifen or an AI

  • erento
    erento Member Posts: 187
    edited December 2016

    incomplete ovarian suppression is also my concern, but my MO doesn't believe that hormone levels are reliable for women who are on AI or tamoxifen and doesn't use them and uses lack of period and hot flash as indicator. I'm back on tamoxifen now (with Zoladex) as I had weird side effects on Aromasin. But when/if I go back to an AI again, I'd like to know that my hormone levels are, maybe I'll ask my family doctor.

  • Falconer
    Falconer Member Posts: 801
    edited December 2016

    Hi Kathy,

    I've only just started hormone therapy. The plan was to use Lupron to shut down my ovaries and then take an AI. But really the Lupron isn't treating me well. My new MO said he would have used the one month dose of Lupron not the three month, which is what my former MO prescribed. He is in favor of putting me on Tamoxifen instead. I'm 46, but wasn't really menopausal yet, I don't think. I have a 3 1/2 year old. Best of luck.


  • tarheelmichelle
    tarheelmichelle Member Posts: 248
    edited December 2016

    Kathy, a clarification: I wished I had taken the Tamoxifen before making up my mind about side effects. I don't regret not taking Tamox after my Stage 1. I had almost 4 years of good living without any drug side effects, with a young son. I'm glad it was available to me as a treatment when the cancer spread was detected. I totally understand your POV about treatmen. I was not a patient at MSKCC from beginning. I was borderline menopausal when I started being seen there. I guess that's why they checked me.

    Erento, your doctor might not know what to do with me. I had a uterine ablation, so no periods, and AIs gave me hot flashes, so those wouldn't be reliable indicators for me of menopausal status. Even on Tamoxifen, my hormone levels were clearly Menopausal range.

    Falconer, thanks. I don't want early-stagers to feel hopeless or helpless. Some early-stagers will have a recurrence, that's a fact. Sometimes, it will happen despite making every effort to prevent it. Maybe, the hope lies in LESS treatment, not more. There are ways to manage breast cancer without removing the whole breast and without chemo.

  • stephilosphy00
    stephilosphy00 Member Posts: 161
    edited December 2016

    Started Lupron along with neoajuvant chemo a month ago. The SEs so far are hot flashes and frequent wake up at night. 😓

  • cubbie2015
    cubbie2015 Member Posts: 773
    edited January 2017

    I have only noticed hot flashes as side effects of the Lupron. So far I haven't had any other problems with it.

  • amyfsw
    amyfsw Member Posts: 51
    edited January 2017

    I am also being treated at mskcc. Early stage estrogen tumor, but high oncotype led to Chemo followed by radiation followed by lupron and aromasin. No one has checked hormone levels. I'm considered pre menopausal because I was when diagnosed at 46. Haven't had period since 1st round of chemo 20 months ago. I was told estrogen level can not be reliably checked and must have o/s for aromasin to work. I'm definitely menopausal now. Hot flashes started with chemo and dry as dust all over. I wonder why we get such different answers about estrogen. So frustrating.

  • KathyL624
    KathyL624 Member Posts: 47
    edited January 2017

    Who is your oncologist at MSKCC? Do you go to the West Harrison location? I'm going there Monday for my monthly shot and my MO is going to sit wifh me to discuss my concerns about the incomplete ovarian suppression issue. Did your MO recommend this course for you? Mine felt i would be ok with just tamoxife

  • maryny16
    maryny16 Member Posts: 6
    edited January 2017

    If anyone has info on incomplete ovarian suppression with Lupron and AI I would love to read it...

    I am on month 3 of Lupron plus AI and I have hot flashes all night every 30 minutes to 90 minutes. I haven't slept more than 3 consecutive hours in 2 months b/c of hot flashes...also had lightheadedness and dizziness -- anyone else have these side effects? can you take another AI (I am on Anastrozole) and perhaps not have all these symptoms? Also, if I opt for surgery to get my ovaries removed will it help with some of the side effects in the long run? I am 47 and probably have 4-5 years before menopause. '

    I tried acupuncture but was super dizzy the night after and think it only exacerbated the hot flashes the next 48 hours....

    Want to stick it out b/c it's slightly more effective than tamoxifen but the side effects are pretty debilitating. At least the joint paint I had for the first 6 weeks has subsided a bit.....Trying to stay positive.

    Any suggestions, or tips to help with side effects would be welcomed!!!

  • BarredOwl
    BarredOwl Member Posts: 261
    edited January 2017

    Hi:

    I posted some information and articles that discuss "incomplete ovarian suppression" in another one of KathyL624's threads back in August. Here is a link to the original post, along with an updated version (edited to update the link to Dowsett, add the title of Dowsett, update information re PDF access, and add links to Bellet and Krekow).

    Prior Post: https://community.breastcancer.org/forum/78/topics/847590?page=1#post_4792588

    Updated Version:

    As a layperson with no medical training, I have no idea what the best approach to endocrine therapy or particular drug selection in any specific case should be. This is a highly specialized area with a very large body of literature. The materials below should not be used by anyone to make treatment decisions, but should be used to inform discussions with one's MO. There may be additional and/or conflicting studies that alter understanding or the findings may not apply in the individual case.

    The differing adverse effect profiles may play into the recommendations received. For some other considerations, see this Medscape article/interview discussing the recent 2016 ASCO guideline re ovarian suppression. The entirety of the text on page 2 of the article may be of particular interest to you, with two caveats regarding AI's: (1) the first, based on conflicting results from the ABCSG12 trial, POSSIBLY due to a different (slightly lower) risk profile of the study group or other factors (but see, Dowsett below); and (2) the second concerning "incomplete ovarian suppression". Dr. Burstein also comments on how he addresses this in his practice.

    Medscape (2016): "Ovarian Suppression in Breast Cancer Patients: Right or Wrong, Depending"

    http://www.medscape.com/viewarticle/860383#vp_1

    Registration for Medscape is free, but if you prefer, you can access the full-text without registration by googling the title of the article (above).

    This recent article discusses the concept of "incomplete ovarian suppression" in much greater detail:

    Dowsett (2016),"Incomplete Estrogen Suppression With Gonadotropin-Releasing Hormone Agonists May Reduce Clinical Efficacy in Premenopausal Women With Early Breast Cancer"

    Full-text page: http://ascopubs.org/doi/full/10.1200/JCO.2015.62.3728

    - A pdf version is available under the PDF tab.

    Dowsett has a somewhat different view regarding the results of the ABCSG12 trial.

    Here is a link to the SOFT-EST study discussed in Dowsett:

    Bellet (2016): http://ascopubs.org/doi/full/10.1200/jco.2015.61.2259

    Here is a link to Krekow discussed in Dowsett:

    Krekow (2016): http://ascopubs.org/doi/full/10.1200/jco.2015.62.2985

    The 2016 ASCO guideline update that addressed the question of ovarian suppression mentions the concept of "incomplete ovarian suppression" in a number of places, including this quote:

    2016 ASCO Update: http://jco.ascopubs.org/content/early/2016/02/11/JCO.2015.65.9573.full.pdf

    "The Panel cautioned clinicians that AI-based therapy is only effective in the setting of ovarian suppression or ablation. There are situations in which there may be ambiguity regarding the status of ovarian function, such as in women with chemotherapy-induced amenorrhea, after hysterectomy, with incomplete ovarian suppression, with incomplete compliance with GnRH agonist treatment, or with other pathophysiological conditions. In such instances, tamoxifen is the treatment of choice, as it remains effective regardless of ovarian reserve."

    The usual caveats about guidelines not mandating individual treatments, and being snap-shots in time that may not reflect the latest studies, etc. apply.

    You may wish to discuss your question with your MO, to gain a better understand his thinking behind the selection of tamoxifen in your specific case, in light of your risk profile and overall presentation.


    Regarding the questions in this thread, I do not know what the recommendation is regarding testing hormone levels. In the literature, different views have been presented. [EDITED to add: Dowsett (2016) above notes:

    "Incomplete suppression of ovarian estrogen synthesis may be achieved with GnRHa as a result of recovery of FSH levels, and this appears to reduce the impact of added aromatase inhibition in at least some women. The possibility that this leads to suboptimal efficacy merits detailed study. Particular attention should be paid toward this problem in overweight patients.9 Monitoring endocrine changes in individual patients to manage their OFS with or without AI or tamoxifen cannot be recommended because the basis of our understanding is incomplete and sufficiently sensitive estradiol assays are not widely available. In circumstances where there is gross evidence of incomplete estrogen suppression, the clinician and patient may wish to consider oophorectomy."

    But see] this Grand Rounds feature authored by a Swedish group and related correspondence:

    Papakonstantinou (2016): Is Estradiol Monitoring Necessary in Women Receiving Ovarian Suppression for Breast Cancer?

    http://ascopubs.org/doi/full/10.1200/JCO.2015.65.3493

    Lin (2016): "Estradiol Level and Menopause"

    http://ascopubs.org/doi/full/10.1200/JCO.2016.69.2251

    Papakonstantinou (2016): Reply to A.Y. Lin

    http://ascopubs.org/doi/full/10.1200/JCO.2016.69.5866?trendmd-shared=0

    There can be challenges in determining estradiol levels in this setting.

    BarredOwl

  • maryny16
    maryny16 Member Posts: 6
    edited January 2017

    Thank you Owl - very informative and appreciate you re sharing.

    How do you know if your ovarian suppression is incomplete? Which tests should I be asking for ? Do you know if the Lupron side effects are worse than if you have your ovaries removed over the long term? I probably have 4-5 years at least before menopause so I am wondering if that would cool the non-stop nighttime hotflashes over the long term.....I am on Armidex (astronzonole) plus lupron... I don't want to consider t if it will make the hot flashes and insomnia worse. Woudl love any advice on how to deal with the SE or other suggestions.....