Bringing in 2014 with Tamoxifen!

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  • rettemich
    rettemich Member Posts: 369
    edited June 2014

    Yes I too am taking the Effexor my DO prescribed it right along with the Tamox. As I told her I was not going through that again. I started on the Effexor a few weeks before the Tamox to adjust to it. Honestly probably should have started even earlier. But so far no Hot Flashes. Yeah! Except for just being HOT as I live in AZ, 107 today.

  • KLJ
    KLJ Member Posts: 284
    edited June 2014

    Just started taking Femara (generic) one week ago today. My MO warned me that side effects had a wide range and varied greatly from person to person. I am just wondering if anyone is having SE's how quickly did you start to notice them? I have been feeling bone pain, especially in my hands the last couple of days and had my first ever hot flash tonight. Just seems like this is happening way to fast. I asked my MO the million dollar question of "if I were a family member would you recommend taking this?" He honestly couldn't answer because my pathology report from the biopsy in FL and my pathology report from the surgery in CA were different. The FL pathologist said I had DCIS and IDC and that the tumor was larger than the pathologist here in CA felt it was. Also no Oncotype test could be done because all of the IDC was removed with the biopsy. He said I was a difficult case and all he could do was give me my options and leave it up to me. Not liking the SE's at all and questioning whether I should take this or not. Seems like one pill leads to another pill for every SE you have :(

  • KLJ
    KLJ Member Posts: 284
    edited June 2014

    Just had an interesting lunch date with my step-son who just happens to be a pharmaceutical rep. Of course, it's not for a company that makes any drugs that I need but what an insight he gave me into the inner workings of the insurance companies, our government, and just who, in reality dictates our healthcare. Made me want to give up fighting for the meds I need and start looking for some homeopathic answers! It's crazy what our government has done to us! Rant over :)

  • rettemich
    rettemich Member Posts: 369
    edited June 2014

    KLJ, Yep, I hear you. I read a report, actually a few, that said Chemo this the highest money maker for hospitals and cancer centers. You are so right with take this pill, oh se, oh here's another pill. Why would the pharmacy companies want to cure you? Just think of the money they would lose. It's sicking to think that Cancer has become a multi billion dollar business. A business set on just keeping you well or sick enough to need treatment or drugs. Ok my rant over too. And no I'm not one of those conspiracy people. It's Just Business.

  • Amelia123
    Amelia123 Member Posts: 96
    edited June 2014

    Hi everyone.  I just started taking Tamoxifen last week.  When did your SE, if any, start?  Is it safe to say that if you've been on it for several months and have no SE then it should stay that way, or is this just wishful thinking? 

    Do you take it in the morning or at night?  I wish my MO spent an hour discussing things with me, like KLJ's did.  I'm always the one asking questions and can never think of everything.  Thanks goodness for these boards!

  • KLJ
    KLJ Member Posts: 284
    edited June 2014

    rettemich, I'm not a conspiracy theory person either. It's just sad that it has to be this way!

  • rettemich
    rettemich Member Posts: 369
    edited June 2014

    KLJ   I agree it's really sad.

  • DawnCT
    DawnCT Member Posts: 143
    edited June 2014

    Hi Amelia-

    I just finished 4 mths on Tamoxifen and have had minimal side effects.   I do notice that I get quite tired during the afternoon.   I would say that it took a few weeks for that SE to start.  I also had a couple of very heavy periods in the first two months of taking Tami, but my last period was normaI. I think it really varies from person to person.   One previous poster said that they had new side effects show up at a year.   My Oncologist said that he thought that the side effects usually settle out after a couple of months.   So,  who knows?   I have to say that I was really worried about taking Tamoxifen and it has not been bad at all.   If it helps me to not have a recurrence then I can deal with the side effects I am currently having.   Wishing you minimal side effects too! 

  • rettemich
    rettemich Member Posts: 369
    edited June 2014

    Amelia, Do you think you are having SE?

    I had mood swings and insomnia when I started. Taking Effoxer to help with hot flashes so far so good. My little understanding is that SE can come on at any time.

    I started taking it in the morning but I take it at night now. Dr. said it might help the insomnia. Not sure if it was that or just getting more use to it.

  • KLJ
    KLJ Member Posts: 284
    edited June 2014


    I keep telling myself that it is too soon for SE's but I also hate to think they are just in my mind! But the mind can do some strange things. I'm giving it a month and then seeing the MO again to discuss it. Hot flashes, insomnia, and pain in both hands. Lot's to think about when it comes to taking these meds. And then the meds they want to use to treat the SE's. One pill after another. Keeps somebody in business and living the good life!

  • Salina888
    Salina888 Member Posts: 96
    edited June 2014

    Went to see my MO and he said a new treatment that has really good results came out this month in June for women that are premenopausal and estrogen positive.  It involves getting a shot in the ovaries once a month, then switch from Tamoxifen to an AI.  The possible draw back is more hot flashes and bone pain, but he said the risk of recurrence is even lower.  My MO will research more, then let me know if it's a good idea to try.  If the side effects are too much, one can easily go back to Tamoxifen. 

    Medical shutdown of the ovaries

    Medicines can be used to temporarily stop the ovaries from making estrogen. Two of the most common ovarian shutdown medicines are:

    • Zoladex (chemical name: goserelin)
    • Lupron (chemical name: leuprolide)

    Zoladex and Lupron are both luteinizing hormone-releasing hormone (LHRH) agonists. These medicines work by telling the brain to stop the ovaries from making estrogen. The medicines are given as injections once a month for several months or every few months. Once you stop taking the medicine, the ovaries begin functioning again. The time it takes for the ovaries to recover can vary from woman to woman.

  • Amelia123
    Amelia123 Member Posts: 96
    edited June 2014

    It's just been a week, so no SE so far.  I wasn't aware of all these SE until I read about them here.  Will let you know if anything changes.

  • KLJ
    KLJ Member Posts: 284
    edited June 2014

    Amelia 123, I hope you don't get any of them. Mine actually seem to be subsiding. Maybe it's just the new grandbaby of mine that was just born this evening :)


     

  • rettemich
    rettemich Member Posts: 369
    edited June 2014

    KLJ- That would definitely take your mind off of it. Congratulations!!!  Enjoy that new grandbaby.

  • DawnCT
    DawnCT Member Posts: 143
    edited June 2014

    Congratulations KLJ!   

  • KLJ
    KLJ Member Posts: 284
    edited June 2014

    Thanks DawnCT and rettemich! He is 7 lbs. of pure adorable!

  • KatiAK
    KatiAK Member Posts: 138
    edited June 2014

    Wooo!  Congratulations KLJ!  Baby's are awesome!

    I'm 6 days into the Effexor 37.5. At first I wasn't sure but now I'm thinking this is a good thing.  Way fewer hot flashes, less back pain, more energy ... hm.

    But I'm on vacation right now, maybe that's why I feel better.  I'm with my teenage son watching him play hockey and I just celebrated my birthday so life is good.

  • KLJ
    KLJ Member Posts: 284
    edited June 2014


    KatiAK, Happy Birthday! I'm glad you're on vacation but hope that it is not the only reason you are feeling better. I am seeing my oncologist again to talk about it. I really only notice the SE's first thing in the morning especially in my hands. So hard to get them moving. And then at night the hot flashes start. I think he will tell me to stick with it and that the SE's will get better with time. Wish it would all just go away for all of us!

  • Moderators
    Moderators Member Posts: 25,912
    edited June 2014

    KLJ, congrats! I'm sure the new grandbaby will bring lots of smiles and good times. and KatiAK happy birthday to you.

    Wishing you all the best. 

    from The Mods

  • rettemich
    rettemich Member Posts: 369
    edited June 2014

    KatiAK, Happy birthday. And enjoy your vacation.

  • KatiAK
    KatiAK Member Posts: 138
    edited June 2014

    Thanks for the birthday wishes!  I did have back pain today for awhile but the hot flashes are fewer and milder so it's worth taking the extra pill everyday so far.

  • JWoo
    JWoo Member Posts: 1,171
    edited July 2014

    Hey ladies!

    I have been taking 37.5mg of effexor every other day to help combat the SEs from tami, but I really don't like taking it. Does anyone have any success stories for other things helping with hot flashes? 

  • RedReading
    RedReading Member Posts: 2,143
    edited July 2014

    My doc allowed me a medication vacation for two weeks. Said the Tamoxifen wasn't working properly but that they didn't really think it would since I had been on hormone for 3 years before bc. News to me. So the idea was to stop for two weeks then start again as sometimes this kick starts the meds with less SE's. 

    Well it's been two weeks since I restarted and my SE's are back with a vengeance. My hands are nearly useless again. Hot flashes and night sweats stepped up again. I am so fatigued. I am thinking of leaving it another 2 weeks to give it an honest one month shot before I call my oncologist. But I'm not sure. 

    Any opinions would be appreciated. 

    Thanks.

  • Headeast
    Headeast Member Posts: 619
    edited July 2014

    RedReading, remember there are so many other medications to try. MOs are used to prescribing the same Tamoxifen but ask to change it to another one. I was just changed to Fareston and should start taking it very soon. 

    Here in this same website there is a table that compares SE among the different medications. Under hormone therapy.

  • KLJ
    KLJ Member Posts: 284
    edited July 2014


    RedReading, I was started on Femara and completely lost the use of my hands. The mood swings and the bone/joint pain was not the quality of life I am looking for so I have stopped taking it. Slowly my hands are coming back and the mood swings are subsiding. I am seeing my oncologist in a week and will see what he suggests but I have decided that if it takes pill after pill to combat the side effects of  a pill that is giving me a slight chance that a recurrence will not happen I am not going for it. I will try whatever he suggests and give it a chance but I am not going to keep living a life of pain in my joints for that small percentage. Just my personal choice :)

  • ClaireFraser
    ClaireFraser Member Posts: 94
    edited July 2014

    I just started Tamoxifen on Saturday.  My doctor prescribed 20 mg 1 x day, but I'm splitting it and taking 10 mg in the morning and 10 mg at night, because I have a sensitive stomach (I also read that the lower dosage twice a day can help with the side effects).

    I am trying to stay positive, but the list of side effects scares the hell out of me.  I am going to take it one day at a time, but if my "quality of life" changes drastically because of the Tamoxifen, I will stop taking it.

    Claire

  • Mouche
    Mouche Member Posts: 63
    edited July 2014

    I will be taking my first pill tomorrow, not sure if I will take it morning or night, I think my script said 20mg daily. I forgot to ask my MO at today's visit what's the best time to take it.

  • Louanne
    Louanne Member Posts: 101
    edited July 2014

    Hello ladies! I'll be starting tamoxifen this week. I would greatly appreciate any opinions on the right time to take it, morning? night? Thanks! 

  • Louanne
    Louanne Member Posts: 101
    edited July 2014

    Hi Mouche, didn't see your question before I posted mine. Maybe we will get double the answers! 

  • JWoo
    JWoo Member Posts: 1,171
    edited July 2014

    hi ladies!

    for me, taking at night before bed helped a little. i think everyone is different though, so you just have to experiment. If you can tolerate or need an anti-depressant, effexor really puts the SEs of tami in check. I am finding that the SEs for effexor are more than I want to deal with though. again, those are different for everyone. it is not easy to navigate through this, but, i think it is worth it if it truly reduces the chances of recurrence or mets. 

    good luck and good health to you!

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