Tamoxifen alone vs. Lupron + Aromasin?????

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gindugirl
gindugirl Member Posts: 47
edited May 2016 in Hormonal Therapy - Before, During, and After

Hi! I'm new on this topic. I'm 42 years old and premenopausal. I didn't do chemo just got dx with a recurrence and my onc has given me a choice of either tamoxifen alone or shutting down the ovaries with lupron and then starting Aromasin. I've been researching like hell all clinical findings during the big 2014 SOFT and TEXT trials where they showed:

RESULTS:

After a median follow-up of 68 months, disease-free survival at 5 years was 91.1% in the exemestane-ovarian suppression group and 87.3% in the tamoxifen-ovarian suppression group (hazard ratio for disease recurrence, second invasive cancer, or death, 0.72; 95% confidence interval [CI], 0.60 to 0.85; P<0.001). The rate of freedom from breast cancer at 5 years was 92.8% in the exemestane-ovarian suppression group, as compared with 88.8% in the tamoxifen-ovarian suppression group (hazard ratio for recurrence, 0.66; 95% CI, 0.55 to 0.80; P<0.001). With 194 deaths (4.1% of the patients), overall survival did not differ significantly between the two groups (hazard ratio for death in the exemestane-ovarian suppression group, 1.14; 95% CI, 0.86 to 1.51; P=0.37). Selected adverse events of grade 3 or 4 were reported for 30.6% of the patients in the exemestane-ovarian suppression group and 29.4% of those in the tamoxifen-ovarian suppression group, with profiles similar to those for postmenopausal women.

But they also mention later in the study that the marked improvement of exemestane-ovarian suppression was most most successful in <35 premenopausal women who did do chemo. In the sub group I represent, there was only a nominal difference.

So now I'm really torn. Which one should I do? I'm leaning towards Tamoxifen only, but when I asked my Onc what she would prefer, she said the lupron+Aromasin because she wants to "shock" the body and any other cancer cells that may be still lingering, by shutting down the estrogen supply from my ovaries. I'm not doing chemo b/c Oncotype and mammoprint were very low. So should I be this aggressive with hormonals? Or will it be fine to just take tamoxifen? I'm also super diligent about my diet and exercise. Like SUPER diligent. No sugar, simple carbs, etc. And I'm taking DIM, curcumin, reishi muchroom extract, reversatol, and others. I'm trying to hit this from all angles.

Any insight would be very much appreciated! Or how you feel on either of these protocols? Thanks ladies!!!

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  • Goodie16
    Goodie16 Member Posts: 446
    edited April 2016

    IMO, I would start with Tamoxifen. If you can't handle the SE's, you can always change to Lupron and one of the AI's. That's what I did. So far, so good.

    Breastcancer.org just released this study yesterday. I feel it confirmed my onc's course of treatment for me. My oncotype score was also low (12). http://www.breastcancer.org/research-news/oncotype...


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  • labelle
    labelle Member Posts: 721
    edited April 2016

    Were you on any kind of anti-hormonal treatment between your original BC diagnosis and your recurrence? Because if I were on one or the other and got a recurrence while taking it, I'd want to try something different. If you weren't taking either an AI or Tamoxifen, it is sort of a pick your side effects kind of thing IMO. AI+OS might give you a few percentage points advantage over the tamoxifen in terms of preventing a recurrence, but more women seem to report uncomfortable side effects with an AI+OS, especially in terms of their sex lives and aches and pains-which isn't to say tamoxifen doesn't have some nasty side effects too. Of course lots of women on both say they feel fine.

    The fact that your OC is giving you a choice, makes me think she doesn't believe there is a lot of difference. If she felt very strongly about one, I doubt she would offer you the choice of the other. No matter which one you choose, you can always switch if you find the side effects to be too unpleasant. That's the good thing about having the choice.

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  • gindugirl
    gindugirl Member Posts: 47
    edited April 2016

    Thx so much ladies! I appreciate your input tremendously.

    Goodie16- thank you for that link. I read the study. Very interesting and makes sense. I'm so happy that our cancers are now treated individually. I always sensed chemo wasn't right for me. I knew it in my gut. I was so relieved when my oncotype score came back and confirmed it. In the past I would've been almost forced to do it. And in stage IV, to have one less thing hurting your immune system seems like it would be such a relief for you. Focus on the therapies that will work. So how long were you on Tamoxifen before you switched. And you do feel like the SE's are better now?

    Iabelle - I did decline tamoxifen the first time. And I'm now 100% ER positive, so can't argue with the Onc now! I'm leaning towards trying tam first just to see how I feel and then taking it from there. I also have the option of lupron + tamoxifen. (so I could just add the lupron later too) She gave me all 3 choices actually. Yes, seems you're right. She couldn't be that swayed to one if she gave me 3 choices.

    I was looking for a poll of how women feel who've tried both. Women on AI's vs. Tamoxifen. I wonder if that exists?

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  • Tresjoli2
    Tresjoli2 Member Posts: 868
    edited April 2016

    so, I am 41 and premenopausal. I am on Lupron and Tamoxifen. My doctor thought the side effects with tamox would be more manageable and she was worried about bone loss. I'm doing ok. My doctors insisted on shutting down my ovaries for two years. I get the Lupron every three months

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  • Goodie16
    Goodie16 Member Posts: 446
    edited April 2016

    gindugirl, I was on Tamoxifen for 9 months before I made the switch. So far, so good on the Lupron and AI's. I've been on Lupron since January and we added the AI 2 weeks ago. I'm coming up on my 2 year diagnosis date on the 16th and am currently NED.

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  • gindugirl
    gindugirl Member Posts: 47
    edited April 2016

    tresjoli2- did she give you a reason for wanting to go more aggressive with the hormonals? Did it have to do with being Her2+? What are your SE's so far if you don't mind me asking :) Thanks!!

    Goodie16 - thanks so much for explaining. Congrats on NED!! That's awesome. Do you have any SE's on L+A? What was your main problem with Tam before you switched?

    Thx ladies, I really appreciate all the info!!!!

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  • readytorock
    readytorock Member Posts: 199
    edited April 2016

    I don't understand why chemo isn't being recommended this time if you had a reoccurance within two years? I understand the oncotype was low initially, but you were on the losing side of the statistics there.

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  • Goodie16
    Goodie16 Member Posts: 446
    edited April 2016

    gindugirl, my main problem with the tamoxifen was bone/joint pain. I have a physical job and it was really effecting my ability to work and to just live life.

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  • Tresjoli2
    Tresjoli2 Member Posts: 868
    edited April 2016

    I'm 100% ER and PR positive. At age 40, my doctor felt it was super important to shut down all my estrogen production for at least two years. My feet hurt when I get up in the morning. Sex is very painful without lubrication, but OK with it. I have to really work at it though, I have no libido. My dh is a saint. Other than that things are good.

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  • gindugirl
    gindugirl Member Posts: 47
    edited April 2016

    readytorock- the reason why they don't recommend chemo in my situation, even after a recurrence is because the tumor is still the same biology as seen by the oncotype and what node it was, as the first tumor. So on a low oncotype tumor, studies have shown that chemo can actually have the reverse effect. If the cells are dividing slowly, then chemo doesn't affect it and it only hurts your immune system and healthy cells. So the risk/benefit isn't worth it in this case. However, in saying that I'm sure if I demanded chemo they would give it to me and there are probably MO's out there who would say do it. But the latest studies point to a higher mortality rate in women with low onco's who do chemo. It's only slightly higher, but it's definitely not lower. But the minute your oncotype score goes up to the mid range, that stat completely flips and the survival rate goes way up for those who do chemo. It's allllll about the biology of your specific tumor. Thank god we can test that now!

    goodie- got it. Thx for sharing that.

    tresjoli2- I didn't see lupron in your signature. That's also what you're taking you said right? Thanks for sharing! I appreciate it.


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  • Tessio
    Tessio Member Posts: 46
    edited April 2016

    I'm so glad to see this thread. I'm 43 and have been on Tamoxifen for one month. About a week before I started it, I had my first period since chemo. My period came back with a vengeance and I've been anemic this whole month. A temporary fix was taking provera to stop period. 10 days later my period starts again. My oncologist wants to me to change to lupron and an AI. I'm so frustrated and weak. I wonder how much of the weakness is from low hemoglobin (from heavy bleeding) or is it from Tamoxifen?? Stairs are impossible right now.

    Thanks for hearing my vent. I guess, lupron is the way to go......I just want to be able to go up stairs and roller skate with my kids.

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  • Tresjoli2
    Tresjoli2 Member Posts: 868
    edited April 2016

    gindugirl it won't let me put it in my signature...only zoladex is an option. I suspect it's because it's off label use (at least, I think it's off label use)

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  • morelandks
    morelandks Member Posts: 51
    edited April 2016

    Tessio - how nice to find you again on a different thread (albeit not for great reasons!). You and I were both going through rads at the same time - I think we even had the same schedule.

    I was unable to take Tamoxifen due to the blood clotting risk - I managed to end up with blood clots in my lungs following surgery, so my MO said "nope, not worth the risk" and moved me straight to Aromasin. As we are not completely sure that I am post-menopausal, I also get to have Lupron injections for a couple of years. I started both a week ago. So far, the only significant side effect is neuropathy, which may or may not actually be an SE from the Lupron. I had neuropathy with Taxol, and neuropathy with Lupron is extremely rare, so not sure yet what's going on.

    Anyway, I actually had MORE energy last week than any time since my diagnosis. Crazy, right? My MO says it can take a couple of weeks for the full impact of the AI to hit, so it's still early days, but so far so good.

    For whatever it's worth, and given what little I have learned about all this stuff, I would think it's worth trying the Lupron plus Aromasin - seems to be a reasonably standard alternative for those of us who have trouble with Tamoxifen for one reason or another.

    Please let us know how you're doing and how things develop.

    Kim

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  • Mimi27
    Mimi27 Member Posts: 2
    edited April 2016

    Kim,

    Just wanted to let you know that I received my first Lupron shot a month ago and I have paresthesia (pins and needles) in both arms and hands. Not sure if this is similar to your neuropathy symptoms. I was supposed to have my second shot yesterday, but this side effect unnerves me. I am currently on arimidex, but now looking into tamoxifen plus a blood thinner, even though I had a stroke many years ago in my early 20s. I would prefer to keep my ovaries. Struggling with what to do.

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  • morelandks
    morelandks Member Posts: 51
    edited April 2016

    Hi Mimi - yes, I've had pins and needles all over, more intensely in m hands and feet, which turned into numbness in my fingertips and toes. I had more or less the same thing happen with Taxol, but a couple of months after finishing chemo I got sensation back in my fingers almost completely and significantly in my feet. So, having the symptoms back is annoying, but I am not as afraid of it. I am trying gabapentin to see if it helps - my MO and I have been talking about this for a while - finally decided to give it a go, at least for the next month until my next scheduled Lupron shot.

    I hear you on the decision making - I am not sure which way I'll go if the neuropathy is a real issue for me. Maybe there is another drug than Lupron that would be a option. We'll see!

    Hang in there. . . .

    Kim

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  • Moderators
    Moderators Member Posts: 25,912
    edited April 2016

    Mimi27, welcome to our community, and thank you for sharing our experiences with everybody here. We hope the forums are helpful and easy to navigate, and that you're finding support and great information. Please, let us know if we can be of any assistance!

    The Mods

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  • Tessio
    Tessio Member Posts: 46
    edited April 2016

    hi Moreland! I know we've all moved on, but I miss our winter rads team.

    I've been off the radar for a while dealing with this heavy period. I am very thankful for my GP who recommended another blood test with results of severe anemia. I had a blood transfusion earlier this week to build me back up. I finally got my first lupron shot yesterday! I'm hoping that it will stop my period soon. I had no noticeable tamoxifen SE in the last month. Yea! Praying now that period will stop and I can start being stronger. Especially for future ablation and reconstruction.

    Warrior on ladies. I wish eventually just take tamoxifen and have ablation.

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  • morelandks
    morelandks Member Posts: 51
    edited May 2016

    Hi Tessio - I miss our rads group too! (and have felt a little weird about missing it as I do not miss rads in the slightest - ugh!. I dealt with severe anemia a few years ago and it is indeed debilitating. I'm so glad you've gotten help with this - I'm sure you'll be feeling better soon. Take care of yourself. Kim

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