Need encouragement - anyone tolerating hormone therapy well??

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So I am on my first month of Lupron and Im about to start Femara. It seems like all of the posts I read about hormone therapy is terrible. Is there anyone out there (especially pre-menopausal) doing well on an AI or Tamoxifen? Just looking for some encouragement. Hoping that I can do this....

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  • debiann
    debiann Member Posts: 1,200
    edited June 2015

    So far so good for me. I've been on arimidex for almost 8 months. I get some hot flashes, but they are lessening. I was post menopausal when I started. I think that makes it a little easier, not a huge plunge in estrogen levels. If you're being pushed into immediate menopause I think its harder, however natural menopause was no picnic either. 

  • ElaineTherese
    ElaineTherese Member Posts: 3,328
    edited June 2015

    I've been on Aromasin since February. I do have hot flashes and had some moodiness, but Celexa took care of the latter. I was pre-menopausal but I'm taking Zoladex (it's like Lupron) to suppress ovulation. Overall, life on an AI is OK. I don't have any joint pain and haven't had any weight gain. My hair hasn't thinned, and I've been sleeping well. If the SEs remain stable, I don't think I'll have a problem doing this for 10 years. Best wishes to you!

  • muska
    muska Member Posts: 1,195
    edited June 2015

    Working fine for me too - have been on anastrozole - generic for arimidex -  for about 14 months.

    Generally speaking, I think if you go to websites like drugs.com or rxlist.com you can easily find the list of possible side effects and how frequent they are that would be more reliable than what you will get here. For example, drugs.com says: "Musculoskeletal side effects have included arthritis (up to 17%), arthralgia (up to 15%), bone pain (up to 12%), osteoporosis (up to 11%), fracture (up to 10%), and back pain (up to 11%)." No matter how you read it that means that half of the women do not experience musculosckeletal side effects. For comparison, failure rates of breast reconstruction if radiation is in the picture are worse but most of us still do reconstruction.

  • NineTwelve
    NineTwelve Member Posts: 569
    edited June 2015

    Zoladex and Tamoxifen here, since October of last year. Have some moments of being too warm suddenly. Other than that, no really bad side effects, and I actually lost weight after going on hormonal tx. It's not bad for everyone. However, I have a theory that this is easier if one is older and closer to natural menopause.

  • shelleym1
    shelleym1 Member Posts: 298
    edited June 2015

    Yeah, I am scared because I am 35. I just worry about how bad this is going to hit me.

  • ruthbru
    ruthbru Member Posts: 57,235
    edited June 2015

    I did 5 years and was fine. I was a little hot flashy at first (changed my wardrobe....no turtlenecks, wore layers, zip down the front sweaters, got a tower fan for my desk at work & a couple others for home), and a little stiff & achy (a friend who had started before me said, 'Keep moving" and so I did....kept up with my exercise routine and made sure I got lots of movement during my regular day too). I'd say it took about 6 months for my body to adjust (I was never that bad but all of the sudden I realized I wasn't achy from sitting on the bleachers at a basketball game.....that kind of thing). Go in thinking everything will go well, and deal with any SEs as they arise. DON'T spend a lot of time on the internet (including here) reading about people's horrible experiences or you will drive yourself crazy. Remember that they are the minority, the people who are doing well are mostly just out living their lives.

  • Viceroy
    Viceroy Member Posts: 69
    edited June 2015

    I have only been on Tamoxifen for a month but I haven't had any side effects at all. I still got my period. No hot flashes. I have been exercising and eating well and my weight is going down by about a half pound a week, which seems about right.

  • Bippy625
    Bippy625 Member Posts: 890
    edited June 2015

    hi shelleym,

    I am 47 and about 2 months into Tamoxifen with little SEs. I was premeno before chemo.

    I feel hot sometimes, but not bad. Also i am in Fla. and it is blistering out here now, so I just crank down my extra window unit at night and chill

    I read too much about Tamoxifen prior to starting and it flipped me out, all for no reason. Hopefully you will not have any extreme SE either! Oh, did have some insomnia at first but it is resolved.

    How ya doin otherwise?

  • Kicks
    Kicks Member Posts: 4,131
    edited June 2015

    I have been on Femara/letrozole for 5 1/2 yrs with no issues I can say it has caused.

    I had been osteopenia for many yrs (huge family history on both sides) and in those yrs have gone on to osteoporosis (would have happened if I did nothing) but is handled by Fosamax. I do occasionally have some cramping in feet/ankles but again that started before Femara/letrozole and is because during Taxol I started having issues with low potassium levels and still do - it is handled with adding more potassium pills to keep level up. I have never had 'hot flashes' - not even when I went through natural menopause at 44. I have not gained any weight or been limited in anything I want to do.

    No one can know what their individual experience will be as we are each so unique. Do not dwell in the negative - negative brings on negative. Everyone should educate themselves about the possibilities but do not assume that 'you' will experience any (or ALL) the SEs collectively that are posted.

    It is very easy to find the 'negative' and get 'stuck' there. There is 'positive' but, unfortunately, the 'negative' gets more 'attention'. Don't choose to dwell in the negative of others - no matter what may come to you, LIVE your LIFE to the utmost - not be 'crippled' by fear based on what others say their 'experience' was/is. I guess a way to say it is - I am ME: YOU are YOU : others are others.

  • Cowgirl13
    Cowgirl13 Member Posts: 1,936
    edited June 2015

    I have been on Arimidex for 5 years and I will be on it for 10 years. At first I really had a hard time but after 3 or 4 months, everything cleared up. No problems with it now....so glad I stayed on it.

  • jcfree
    jcfree Member Posts: 105
    edited June 2015

    I start on Anastrozole after my masectomy next month. Good to know women are tolerating these hormone drugs pretty well. I was really dreading and fearful of SE but reading these posts makes me hopeful I will be tolerant and not have bad SE as well.

  • inks
    inks Member Posts: 746
    edited June 2015

    I'm 38 and even though it's not great I will be doing this for 10 years if necessary. Sometimes I wish I had stocks in lubricants since the long lasting lubricants can be expensive. You can switch between different types of AIs also or just do tamoxifen.

  • edwards750
    edwards750 Member Posts: 3,761
    edited June 2015

    I've been on Tamoxifen for several years. Worst SE is hot flashes. Bit of weight gain initially but leveled off. Some aches and pains but nothing major. Taking it 5 years only. 3 1/2 years out. ONC said no need to be on it for 10 years although wouldn't mind - extra insurance policy. Regardless a number of women have suffered with this drug. Fortunately I haven't.

    Diane

  • AussieElaine
    AussieElaine Member Posts: 64
    edited June 2015

    Hi all, I have been on Arimidex for just over 5 months and was petrified of theSE's. Fortunately I have only had some hot flashes and insomnia now and then, no joint pain or weight gain. Have dry lips though. I am vey active, walk and exercise every day. Also have VitD3 of 116 so maybe a combination of these which is helpful. Good luck

  • Cowgirl13
    Cowgirl13 Member Posts: 1,936
    edited June 2015

    Sometimes I think we need a new post for hormonal (tam, AI) users who aren't having side effects, or those who had side effects and then it got better.

  • ksusan
    ksusan Member Posts: 4,505
    edited June 2015

    Cowgirl, that sounds like an excellent plan. Also the threads "Surgery: It went pretty well," "Chemo: Side effects are manageable," and "Radiation: Not that bad."

  • shelleym1
    shelleym1 Member Posts: 298
    edited June 2015

    Cowgirl - I totally agree. The regular Tamoxifen and AI threads will FREAK out a newbie.


  • ruthbru
    ruthbru Member Posts: 57,235
    edited June 2015

    Do NOT spend time on those sites or threads....when I first started I stayed away from them like the plague because they scared me so much (now I just go over once and awhile and try to be 'the voice of reason'). Be grateful that this is an option for us (people with other types of cancer, including our triple negative sisters, would be thrilled if there was something they could take on a long term basis that would reduce their chance of recurrence!). Just take it and then go out and live your life. If you have side effects, deal with them as they arise.

  • Cowgirl13
    Cowgirl13 Member Posts: 1,936
    edited June 2015

    Shelly and Susan, what do you think would be a good title for a new thread like this?

  • shelleym1
    shelleym1 Member Posts: 298
    edited June 2015

    good question! Let me think

  • muska
    muska Member Posts: 1,195
    edited June 2015

    Why do we need a new thread? Why can't we continue this thread?

  • shelleym1
    shelleym1 Member Posts: 298
    edited June 2015

    That's a good point! Let's keep it goin'

  • AmyQ
    AmyQ Member Posts: 2,182
    edited June 2015

    I am on Femara and have been since July, 2013. It's hard for me to know if my left hip pain is a SE or just arthritis from a pathologic fracture several months prior. I had frequent hot flashes early on, but those have subsided substantially. I also receive monthly Xgeva shots so again, hard to know where the aches and pains begin and end from that. Overall, other than feeling 90 some mornings, i'm doing pretty well on Femara and so far keeping CA at bay.

    Amy

  • Suladog
    Suladog Member Posts: 952
    edited June 2015

    Cowgirl,

    that would be great as reading about the SEs before starting arimidex scared the shit out of me. I've been on my arrimdex now for 3 days so far so good

  • Nomatterwhat
    Nomatterwhat Member Posts: 587
    edited June 2015

    I have been on Femara/Letrozole for about 5 months now and the only side effect I have is dry skin.  I have to put on my deodorant at least 2-3 times a day and I use a lot of lotion.  I have found that the more water I drink in a day, the less hot flashes I have.  I was first put on Arimidex and after about three days, I hurt so bad I couldn't walk. 

  • Suladog
    Suladog Member Posts: 952
    edited June 2015

    Ruthbru,

    I wish I'd seen this thread a couple of weeks ago, it would have saved me a lot of grief. I'm not a newbie to cancer, but my last tangle was back in 1990, TN in my 30's. They gave me a poor prognosis, and chemo but no hormones. So this time around Triple positive, chemo I was familiar with MX I was familiar with, herceptin's kind like chemo so okay, the scariest thing for me this time was the AIs as most everything I read here was about people being crippled by it, horrible SEs, really scarey stuff. I was almost not going to take it, as my MOs have said I'm low risk this time around, and have done chemo and herceptin, I figure why not do everything I can to avoid having to do this again in 25 yrs, or less. So glad I found this!

  • jc254
    jc254 Member Posts: 439
    edited June 2015

    I've been on letrozole/femara for about two years with minimal, if any, side effects.  Hopefully my bones cooperate and I can continue for another 8 years.  I'm glad there's a simple pill I can take to reduce the chance of recurrence. 

  • fighterinpink
    fighterinpink Member Posts: 3
    edited June 2015

    Just started Tamoxifen 3 days ago! Fingers crossed!

  • Suladog
    Suladog Member Posts: 952
    edited June 2015

    just got off the phone with my SIL in NYC. She's just about finished w/ tamoxifin she's done 5 yrs and her mo at Sloan Kettering says that's all she needs. She had warned me about Arimidex and said don't take it. She's about 10 yrs older than me and she told me she had terrible symptoms after 1 day, ( she'd been on HRT before diagnosis )while she's done great on Tamox. I've been taking arimidex for 3 days now, and I'm feeling fine. Here's hoping this continues.

  • Claire_in_Seattle
    Claire_in_Seattle Member Posts: 4,570
    edited June 2015

    Suladog.....you won't know until you try. I am the only one with breast cancer, but one of my 2 sisters took HRT because she had hot flashes 23 out of 24 hours of the day. I had minimal hot flashes even during Arimidex.

    Just finished my 5 years of Arimidex a month ago. Yes, I do feel a bit different now, but my side effects were mostly additional achiness which I am glad to be rid of. Unfortunately, my right knee still gives me grief, which was true before all this started. I have an active, and full life. I do endurance cycling, running, hiking and skiing. My guy says (not exactly in these words!) that my libido is just fine. I am doing the best work of my life and career. I did not gain weight.

    I did not think that the medical evidence is strong enough to continue for 10 years.

    I am suspecting you will be just fine. Good luck! - Claire

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