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  • KateB79
    KateB79 Member Posts: 747
    edited February 2016

    I've read some of the studies (including SOFT) about Tamoxifen vs. OS+AI, but I figured I'd poll the audience.

    At 36, pre-menopausal before chemo (but no signs of life in my ovaries as of yet, 3 months PFC). . . Tamoxifen or OS+AI? What's your vote? My MO wants me to take Tamoxifen for six months and "then we'll see," but I'm prepared to talk her into OS+AI if need be.

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  • JerseyGirl22
    JerseyGirl22 Member Posts: 342
    edited February 2016

    Kate, I had the same convo with my onc about ovaries being shut down and wanting me to take Tamoxifen for 6 months -year. Then "we'll see" I still wasn't feeling good about Tamoxifen, and told her that right off the bat when I went to my last appt. and she asked if I'd consider an AI. I said yes, as long as I didn't have to do ovarian suppression drugs, too. She ordered my hormone levels checked and prescribed Arimidex. Haven't started it yet, supposed to wait until after rads. Even at your young age, your ovaries may have completely shut down. I have a friend who went straight to menopause during chemo, and she was 39...

    Maybe that's a route you could take when you see your onc... I will say, I kind of had to go in guns blazing, or she would have breezed through that part of the discussion.

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  • Mommato3
    Mommato3 Member Posts: 633
    edited February 2016

    Kate, I was a little older than you...41 when diagnosed. Chemo ended in November and I got my first period mid March. My MO was the same way...take Tamoxifen and wait to see if your periods come back. I was kinda in a grey area for the SOFT trial because of my age. When my period came back, my MO recommended OS/AI. I had originally wanted to go that route but she convinced me to start with Tamoxifen. I eventually did an ooph. That was partially because I'm 90% ER/PR+ but mostly because my mom had ovarian cancer at 18. It's a tough decision. The difference between the two is small. Of course when you're dealing with this, a small percentage can mean a lot to us. The side effects so far are minimal. My biggest complaint is fatigue. Some nights I struggle to stay up after 9pm. I am fairly active during the day so that could be part of it. I believe most is due to being post menopausal now. Do whatever makes you the most comfortable.

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  • runaway
    runaway Member Posts: 16
    edited February 2016

    I'm 50, the chemo pushed me in to menopause. My onc gave me the choice. Since the benefit of AI over tamoxifen is not much (and I don't think there's any head to head trials) and the AI causes osteoporosis ( and I'm a cyclist) and myalgias ( and I'm already suffering) for now it's Tamoxifen for me. I'll re- evaluate depending on how I feel after herceptin, and as new trials become available.

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  • ElaineTherese
    ElaineTherese Member Posts: 3,328
    edited February 2016

    I'm a geezer compared to you ladies; I was diagnosed at 46 but was still premenopausal. I'm doing Zoladex (ovulation suppression) and an AI (Aromasin). When I turn 50, MO is going to check my hormone levels to see whether I can go off the Zoladex. So far, not so bad. I used to get hot flashes (especially in the evenings), but those are tapering off. I was also moody at the outset, but Celexa took care of that. If you visit the "Life with Aromasin" thread, many of the ladies there complain about joint pain. I haven't experienced that myself, thankfully. Nine more years! Nine more years! Nine more years!

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  • lago
    lago Member Posts: 17,186
    edited February 2016

    runaway I was 49 and went into chemopause. Chose AIs. I do now have osteoporosis but I knew I would. Family history, small frame and osteopenic before chemo even started. I'm just over the board with my spine and being treated for it.

    As a bike rider you still need to find some weight bearing exercises. I'm sure you know there is a high incidence of osteoporosis with cyclists.

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  • ashla
    ashla Member Posts: 1,581
    edited February 2016

    Curious. Why all the opposition tamoxifen ?

    Been a mainstay of treatment for many years.

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  • sharapril1021
    sharapril1021 Member Posts: 42
    edited February 2016

    Hello Ladies!

    I have a question: I started Tamoxifen on February 1st and am still doing my Herceptin/Perjeta IV infusions every 3 weeks. A few weeks ago a childhood friend of mine came into town and I had a glass of red wine at dinner. I freaked out afterwards thinking that I shouldn't be drinking. Has anyone been told by their MO that wine is out of the question?

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  • KateB79
    KateB79 Member Posts: 747
    edited February 2016

    My MO and RO are both fine with me drinking in moderation, especially red wine. I didn't drink during hard chemo, but that was more a product of feeling like utter crap than anything else.

    Moderation in all things. :)

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  • SpecialK
    SpecialK Member Posts: 16,486
    edited February 2016

    ashla - the question is for premenopausal/young women - the SOFT trial data showing that ovarian suppression plus an AI (in the study Aromasin), when compared with Tamoxifen, supplied better reduction of recurrence.  Here is an article:

    http://www.ascopost.com/News/20664

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  • ashla
    ashla Member Posts: 1,581
    edited February 2016

    Thanks SpecialK!

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  • Mommato3
    Mommato3 Member Posts: 633
    edited February 2016

    My MO is fine with me drinking in moderation. I think she said no more than 3 per night/7 a week (beer)

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  • Nolagirl1126
    Nolagirl1126 Member Posts: 196
    edited February 2016

    Special K and Ashla - I'm not there yet (just started Taxol) but I read the Soft and Text trials and decided I will have the convo with my MO about AI instead of Tamoxifen. My Mother (who is a 22 year survivor) was actually a party of the Tamoxifen trial over 20 years ago. It has worked Great for her, and she has not had any major issues...but I think I'm leading to AI anyway

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  • Jerseygirl927
    Jerseygirl927 Member Posts: 438
    edited February 2016

    my last herceptin will be March 10, can't wait. Other thing, I am hoping cholesterol comes down also, since all of the chemo drugs etc, my cholesterol is at 250. The anastrozole could be the culprit also, but can't go off that!

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  • Tresjoli2
    Tresjoli2 Member Posts: 868
    edited February 2016

    so I chose ovarian suppression and tamoxifen. My MO was concerned about bone loss on an AI and thought tamox was the right choice for me. I haven't found anyone else with this cocktail so far

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  • RobinLK
    RobinLK Member Posts: 840
    edited February 2016

    I am tamoxifen with oophorectomy. My baseline dexascan already showed osteoporosis, my MO does not want further bone loss from a medication. I had a Reclast infusion to try and rebuild bone since the ooph will cause boneloss by itself.

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  • ashla
    ashla Member Posts: 1,581
    edited February 2016

    Nolagirl112 Thx..

    I was curious as to what appeared a negative bent regarding tamoxifen. Notwithstanding the side effects it has been a highly effective weapon in treating estrogen plus cancers for a very long time.

    I hit a brick wall on Aromatase inhibitors after 2 1/2 years and now...3 1/2 years from the start of hormone treatment I've been switched to tamoxifen. My mo says the difference in efficacy is 4%.

    Much improved quality of life.

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  • ElaineTherese
    ElaineTherese Member Posts: 3,328
    edited February 2016

    Ashla,

    I don't get the Tamoxifen hate either. Every month or so, someone (who hasn't even tried Tamoxifen!) starts a thread, announcing that she plans to say no to Tamoxifen, no matter what her doctors say. I understand when someone quits a med (like you did) because the side effects are intolerable, but to not even try it first seems a bit unreasonable.

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  • KateB79
    KateB79 Member Posts: 747
    edited February 2016

    At this point, I don't hate any of these treatments. If they work, I'm all about them.

    Tresjolie, my MO mentioned OS+tamoxifen. I'm leaning in that direction. I'm going to ask her to check my estrogen levels, and we'll go from there.

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  • ashla
    ashla Member Posts: 1,581
    edited February 2016

    ElaineThere

    This opposition to tamoxifen is surprising to me. I try to keep informed on the latest news in treatments and thought I'd missed something.

    Strange...

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  • JerseyGirl22
    JerseyGirl22 Member Posts: 342
    edited February 2016

    Sort of excited... just got asked to be part of this study. They are only taking 20 people now, not 30, so we'll see. If nothing else, if it helps patients going forward it'll be worth it. I get all the gadgets on Tuesday and then away we go!!!!

    Southern New Jersey's MD Anderson Cancer Center at Cooper is setting up a program for 30 of its breast cancer patients that equips them with Apple Watches to help them self-manage their treatment as well as stay better connected to their care team and each other. The center is working with Wayne, Pennsylvania-based behavioral health technology company Polaris Health Directions on the nine-month feasibility study, which will move into a Phase 2, randomized control trial if it goes wellhttp://mobihealthnews.com/43622/md-anderson-cancer...

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  • TinyDancer5
    TinyDancer5 Member Posts: 232
    edited February 2016

    JerseyGirl, it is exciting! I hope they continue this program at other locations.

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  • fightergirl711
    fightergirl711 Member Posts: 300
    edited February 2016

    JerseyGirl that sounds awesome! Keep us posted on how it goes!

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  • KateB79
    KateB79 Member Posts: 747
    edited February 2016

    JerseyGirl, that's so cool!

    I admit it: I'm a little jealous. :)

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  • TTfan
    TTfan Member Posts: 176
    edited February 2016

    thanks for sharing the neratinib info, I'll have to ask my MO about it. I quit the Arimidex, just couldn't tolerate the severe joint pain and depression. I'll start aromasin in a few days and hope that will be better, but if not , I will happily try tamoxifen. I was lucky and had no problem with Herceptin alone over 30 minutes.

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  • Mommato3
    Mommato3 Member Posts: 633
    edited February 2016

    Is the neratinib still in a clinical trial or are they waiting for FDA approval?

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  • sharapril1021
    sharapril1021 Member Posts: 42
    edited February 2016

    Thanks KateB79 and Mommato3 for the info!

    Now I don't have to worry if I want to have a glass of wine. I am not a big drinker anyway. I am lucky if I have one drink a month!

    Have a wonderful weekend ladies!! I'm excited for the 60+ degree weather we are suppose to get in NJ :)




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  • JenPam
    JenPam Member Posts: 176
    edited February 2016

    I was diagnosed at 45--now, at age 46, I'm almost 3 months PFC and my period hasn't returned. My doctor is having my blood drawn next week to try to figure out if I'm in menopause. If not, I'll have an oophorectomy. Either way, I'll be starting Femara. Based on my particular profile, three different MOs recommended I go on an AI for 10 years instead of taking Tamoxifen. I'm open to trying whatever works, and I can envision trying Tamoxifen if Femara doesn't work out well for me in terms of SEs.

    Thanks for the neratinib information! I have an appointment with my MO in two weeks & I plan on asking him about the drug.

    Re: Herceptin, it's funny, because I've attributed my thigh pain to chemo recovery without considering it might be the Herceptin causing the problem. I'd love to know that the pain will resolve in the fall when I've finished the targeted treatment.


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  • twiggyOR
    twiggyOR Member Posts: 270
    edited February 2016

    I'm scheduled for a herceptin infusion on Monday but I'm coming down with a bad cold. Will they still give it to me?

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  • edwsmom
    edwsmom Member Posts: 346
    edited February 2016

    Hi Twiggy - I suspect they still might give it to you. Definitely call the oncology fellow that's on-call and see what they think.

    I'm sitting here at my first Herceptin only infusion. Apparently it's a loading dose again and they want to give it to me over 90 minutes. I'm now really concerned about not feeling well afterwards. I asked about running it slower and they pushed back saying the loading dose is always given at 90 minutes.

    Question - for those of you who did TCHP chemo - did many of you get PCR? If you didn't get a complete response (I didn't), I'd be interested to know what your doctor had to say about it.

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