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Bottle o Tamoxifen

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Comments

  • deeratz
    deeratz Member Posts: 318
    edited January 2016

    rleepac-I kinda look at it the same as I did when I took the birth control pill. I took that to prevent pregnancy. I take my tamoxifen to prevent my cancer from returning. I too want off this crazy BC ride that I didn't sign up for. I'm hoping after I have my exchange surgery and get these rock hard expanders out, I will feel more normal. Feb 11 can't come fast enough

  • molliefish
    molliefish Member Posts: 650
    edited January 2016

    I know how you feel rleepac. I took the dang pill. It didn't hurt. I didn't feel different after swallowing it, and I won't know if it will make a difference or not (I'm hoping)for another 30 years. Or 40. 😉

  • rleepac
    rleepac Member Posts: 193
    edited January 2016

    I know. I really need to take it. As soon as I get over my temper tantrum I will...

  • Wendy3
    Wendy3 Member Posts: 872
    edited January 2016

    Rleepac I'm newly diagnosed stage four believe me a little white pill is not a big deal..... You get to live.

  • ksusan
    ksusan Member Posts: 461
    edited January 2016

    Every day I take medication to control/prevent diabetes, hypertension, asthma, and circulatory problems. I'm not thrilled by tamoxifen's potential serious side effects, but see it as another preventive strategy I can use to stay alive.

  • trvler
    trvler Member Posts: 931
    edited January 2016

    I kind of think of it like the BC pill, too. And you can always stop if you can't tolerate it.

  • Professor50
    Professor50 Member Posts: 86
    edited January 2016

    I totally get the feeling that somehow taking this pill everyday feels like a constant reminder of cancer. I felt just that way for a while there. But it's been a long time now and I honestly don't feel like a cancer patient anymore when I take it. It feels very preventative. And I don't think about it nearly as much as I used to.

  • ang7894
    ang7894 Member Posts: 427
    edited January 2016

    I have mixed reviews on tamox I couldn't handle it and stopped after 2 1/2 years . I know personally some woman I know have no problems with it . But at the same time I know some that have problems. I also know some that even taking it they got cancer back after taking it for 5 years and some still in the process in taking it and got cancer back. I think its all a crap shoot maybe luck of the draw !! I don't know. I certainly don't want to discourage taking it just giving my 2 cents.

  • erento
    erento Member Posts: 187
    edited January 2016

    I've been on tamoxifen for 6 months with minimal side effects, but in the last 2-3 days I started to experience mild tingling in my fingers and toes and sometimes legs, arms and face. I notice it starts about 1 hour I take the pill in the morning and lasts through the day. No tingling when I wake up in the morning, then it starts again once I take it. I'm going to monitor this for a few days and maybe play with splitting the dose. Has anyone experienced tingling with tamoxifen?

  • pennsygal
    pennsygal Member Posts: 264
    edited January 2016

    Joining you today - took my first pill this morning. Six hours in, so far, so good!!

  • queenmomcat
    queenmomcat Member Posts: 2,020
    edited January 2016

    Welcome to the dark side....er, club, pennsygal.

  • CidneyI
    CidneyI Member Posts: 32
    edited January 2016

    I know this has been discussed before but I can not find where. I am having eye issues. At first, I thought I had pink eye in both eye and treated it accordingly. Nope, that wasn't it, treated it with allergy drops, nope that's not it either. Now my eyes hurt with an off and on dull pain behind my eyes and my eyes are always blood red. I am thinking its just another side effect of Tamo to deal with. Anyone have eye issues from taking Tamo?

  • Suzanne50
    Suzanne50 Member Posts: 221
    edited January 2016

    I have to agree that it is all a crap shoot - we can do everything possible to avoid recurrence but there are no guarantees. If it comes back, I like knowing I did all I could.

  • NormaJean65
    NormaJean65 Member Posts: 173
    edited January 2016

    rleepac I can empathize with you completely. After taking it for 5 yrs. I have another 5yrs to look forward to. Just last night my thoughts were (and still are) that I just want my life back. I hate that I feel I am now "branded" forever as a breast cancer patient.

    DeeRatz thank you for giving me a new way to look at my nightly little white pill. You put it in a new perspective for me.

    Wendy3, I hear you and I am so sorry they found it so late in the game.

    Suzanne50, I agree with you 100% but with life many things are a crap shoot. Personally after 5+ years I should be more thankful but sometimes all of us grow weary.

  • bbwithbc45
    bbwithbc45 Member Posts: 367
    edited January 2016

    Cidneyl, my eyes are hurting and I'm experiencing blurry vision, but no redness. I do know that Tamoxifen can alter vision. I finally went to see an ophthalmologist and was told that my issues are caused by dry eyes, which happens when we "grow wiser". I was happy to find out that my optical nerve and everything inside my eye looked OK.

    If your issue does not resolve, it might be worth to pay an ophthalmologist a visit

  • lala1
    lala1 Member Posts: 974
    edited January 2016

    So I had an appointment with my GYN today to do a one year followup from my hysterectomy. I asked him about iCool. He did a little research for me and said that the active ingredient is not technically genistein. He said it's an "altered" version that should not have pose a risk for BC survivors. I told him about Canada having a different opinion and he said it's just a matter of what the FDA allows as opposed to Canada's version of the FDA. He said if it was his wife or daughter he would not have a problem with them taking it. I have put in a call to my MO with the same question. He's the one who recommended it in the first place. So far, he hasn't returned my call but I'll let you know what he says. His specialty is BC and he's a bit of a research hound so I trust his opinion.

  • molliefish
    molliefish Member Posts: 650
    edited January 2016

    Today I took another one. I had my regular hot flashes through the night last night and I didn't sleep well but I attribute that to typical reaction to having to get up before the crack of dawn to be to work on time. I took another tonight. I'm sure it's going to be just fine. :-)


    now my biggest issue will be remembering to take it... just like the birth control pills... all those years ago.


  • Sloan15
    Sloan15 Member Posts: 845
    edited January 2016

    molliefish - I set the alarm on my phone 2 go off twice a day...forever. Otherwise, I think it'd forget, too.

  • superius
    superius Member Posts: 310
    edited January 2016

    I have an ache at the bottom / back of my neck.... don't know if I need a new pillow, or it's because I tighten my muscle when I have the chills, or if it's side effect I should email the MO about. Did someone mention aches & pain as side effects?

  • dtad
    dtad Member Posts: 771
    edited January 2016

    There are many docs out there that feel that Icool is ok to take if you have bc. Wish they could all agree though!

  • keepwalking
    keepwalking Member Posts: 112
    edited January 2016

    Sloan - love the new pic (hair!). I am glad you are still doing well with your megadose :)

    Well, I am restarting tamoxifen tonight. I stopped 2 weeks ago due to some side effects (mainly lower abdominal pain), but by 5 days I was feeling back to normal. So, my MO says lets give it another try. I decided to move to night instead of morning this time because I didn't want to risk feeling a little nauseous in the morning during radiation treatment. We'll see how that goes.

  • goldenpawsKim
    goldenpawsKim Member Posts: 102
    edited January 2016

    Hi Claire - just read about your shoulder. Ever since I started tamoxifen, I've had problems with aches and pains (especially my shoulder). Can barely lift my arm over my head. Did you have those problems too? How did you hurt your shoulder? Don't even feel like having it checked out .... enough with the docs already :) Hope the shoulder is better .... did you have surgery yet?

    Kim


  • fizzdon52
    fizzdon52 Member Posts: 382
    edited January 2016

    goldenpawsK I have been on Tamoxifen for about 9 months now. I wasn't my first choice but I couldn't tolerate Letrozole/Femara. I can't believe how wonderful Tamoxifen is compared to those other drugs. I almost feel like my old self again which is a wonderful feeling. I do get the odd aches and pains, but I have noticed they eventually go. It's almost like Tamoxifen picks on one part of your body for a few weeks or even longer, then decides to pick on another part of the body. I had extremely sore ankles for a few months and even found it hard walking after getting out of bed. However that has subsided now. At the moment it is my shoulders that are bothering me. So yes, I do have very painful shoulders occasionally. However I am expecting that this will stop in a few weeks/months and maybe some other part of my body will start hurting. At least I am alive!!!

  • Suzanne50
    Suzanne50 Member Posts: 221
    edited January 2016

    I put my bottle of tamoxifen by my toothbrush to take before going to bed. It was recommended that I take it at night and I was so afraid of forgetting.

  • Sloan15
    Sloan15 Member Posts: 845
    edited January 2016

    keepwalking -yes, hair! Yay. I hope the restart goes well! Reminds me of a story about the Mars rover. Apparently it wasn't responding right, and the engineer says something like, "Maybe stop it and then turn it back on for a reset, and that should work." Sure enough.

  • lala1
    lala1 Member Posts: 974
    edited January 2016

    My MO called me back today about iCool. Said he's still totally comfortable with me taking it but that he would research further just for our peace of mind. I completely trust him as well as my gynecologist so for now I will continue to take. I've gone from 6-8 night sweats every night to one or two so it really works for me.

  • momwriter
    momwriter Member Posts: 276
    edited January 2016

    I take Tamox right before bed.

    I have weathered it fairly well. But I do think it can give joint aches and muscle cramps. So to combat those I take extra magnesium and fish oil which seem to help. I also do a lot of yoga which helps too even though I'll get occasional muscle cramps and joint aches while doing it. I'm also 50 and in meno so could just be age catching up with me.

  • ladyb1234
    ladyb1234 Member Posts: 1,239
    edited January 2016

    keepwalking, hoping the reboot goes well. Keep us updated

  • molliefish
    molliefish Member Posts: 650
    edited January 2016

    Day three

    I am not sure why I thought there would be any reaction or side effect from this drug at this point. I am smart enough to know that it will take some time for any side effects to be felt given that the drug needs time to work. Suffice it to say I feel pretty darn good. Happy to be on the other side of 'active treatment'. My skin has healed (except for the tan) from radiation. My nails are growing, hair is growing (everywhere) and I feel well. That is what is important to me. I feel well. I'm ready to go back to the gym and get on with it. My thing has always been 'onward and upward' so let's get to it. Chat with you soon!


  • jbokland
    jbokland Member Posts: 275
    edited January 2016

    Mollie- yep! SE may come and go...at any time.

    Overall, I think it's a small price to pay after all the other shit!

    Attitude is 80% of recovery!

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