tamoxifen

phoenixrising
phoenixrising Member Posts: 1,508
edited March 2014 in Breast Cancer #1
Hi everyone, I was wondering if there was anybody out there post menopausal on tamoxifen that a) has had vision changes and b) every so often feels like they are going to start their period. That heavy achy feeling.

I've only started feeling that way since taking tamoxifen. They've done an endometrium ultrasound and everything looks good. But I do worry about it.

Thanks for your help
jan

Comments

  • Unknown
    Unknown
    #2
    Are you doing tamoxifen because Arimidex didn't work out? My onc. explained that Arimidex was better but I would have to take Tamoxifin till I was post menopausal. Haven't done either one yet, just checking in with what I was told.
  • mgm42
    mgm42 Member Posts: 491 Member
    #3
    My sister-in-law is post-menopausal and just finished her tamoxifen this month. She did not experience vision changes. The only side effect she had was leg cramps. She drank diet quinine water mixed with OJ to help with that. I am post-menopausal but my doctors have opted to start me on arimidex when I finish my treatments. Suppposedly, clinical trials have shown tht it is as effective as tamoxifen and better suited to post-menopausal women.
  • manna1qd
    manna1qd Member Posts: 46
    #4
    I was on tamoxifen for five years. Hot flashes were my side effect. I found out from my opthamologist during a routine exam that tamoxifen may effect the retina, I believe. Don't quote me about the retina but I know an annual eye exam was a good idea per that doctor. I never did have any changes in vision or in my exam.
  • phoenixrising
    phoenixrising Member Posts: 1,508
    #5
    Thank you all for your response. The aromatase inhibitors are more effective and have a higher success rate but the protocol here is 2 1/2yrs on Tam, then 2 1/2yrs on arimadex or something similiar. I had browbeat my onc to let me go directly onto the arimadex but my bone scan revealed osteoporosis much to my surprise so it's a no go for me there.

    My eyes have been burning/tired for a while now and I did have an eye exam. He said everything looks healthy. I am getting glasses today so that may help but apparently 13% of people on tam have swelling in the occular cup. I'm not sure if the optometrist was aware of problems with tam. From what I've read the eye damage can be permanent.

    I'll keep you posted in case someone else has these problems and thanks again.
    jan
  • KathiM
    KathiM Member Posts: 8,028 Member
    #6
    phoenixrising said:

    Thank you all for your response. The aromatase inhibitors are more effective and have a higher success rate but the protocol here is 2 1/2yrs on Tam, then 2 1/2yrs on arimadex or something similiar. I had browbeat my onc to let me go directly onto the arimadex but my bone scan revealed osteoporosis much to my surprise so it's a no go for me there.

    My eyes have been burning/tired for a while now and I did have an eye exam. He said everything looks healthy. I am getting glasses today so that may help but apparently 13% of people on tam have swelling in the occular cup. I'm not sure if the optometrist was aware of problems with tam. From what I've read the eye damage can be permanent.

    I'll keep you posted in case someone else has these problems and thanks again.
    jan

    Thank you, Jan!

    I am in a similar situation. Tamoxifen for 2.5 years cause I'm osteoportic. Then, we'll see. I'm hitting the 2-year mark in June. I am surgically post-menopausal (hyster during bowel resection).

    I have had good luck with the tamoxifen, I'm sorry you are struggling. After all the sides from the aromatase inhibitors, I'm not sure I want to switch...we shall see...

    Hugs, Kathi
  • survivor51
    survivor51 Member Posts: 276
    #7
    Jan,
    I thought it was just me. I have not noticed the vision problem but absolutely about the starting my period. I don't even have the parts down there and yet I have been achy, feeling like my ovaries(which I don't have) are the size of grapefruits. I was told that it was from my kidneys acting up. Glad to know I'm not crazy. Angela
  • survivor51
    survivor51 Member Posts: 276
    #8
    Well, I also meant to say I was taking tamoxifen but now on Arimidex. Found the same with Arimidex, plus leg restlessness, and hot flashes(but these are better due to effexor(which is sold for antidepressant but used for hot flashes with chemo). I guess the effexor also is to help with the roller coaster ride. Angela
  • phoenixrising
    phoenixrising Member Posts: 1,508
    #9
    KathiM said:

    Thank you, Jan!

    I am in a similar situation. Tamoxifen for 2.5 years cause I'm osteoportic. Then, we'll see. I'm hitting the 2-year mark in June. I am surgically post-menopausal (hyster during bowel resection).

    I have had good luck with the tamoxifen, I'm sorry you are struggling. After all the sides from the aromatase inhibitors, I'm not sure I want to switch...we shall see...

    Hugs, Kathi

    Hi Kathi, yea I know what you mean. After hearing of all the horror stories of the aromatase inhibitors I'm not sure I would want it now anyway. The other problem I had with tamoxifen other than the increased risk of other cancers is that we can become tamoxifen resistant and it can actually start fueling cancer cells which at that point become quite aggressive. I think that's what happened to my mother-in-law.

    You know my onc on trying to sell me the 2 1/2yrs tam plus 2 1/2yrs AI said that he didn't think tam was effective after 2 1/2yrs anyway. I wonder what he's going to say after my 2 1/2yrs are up and he wants to keep me on Tam. cause of my bones.

    Ah what would I do if I didn't have anything to worry about :) Thanks for your input.
    jan
  • phoenixrising
    phoenixrising Member Posts: 1,508
    #10
    survivor51 said:

    Well, I also meant to say I was taking tamoxifen but now on Arimidex. Found the same with Arimidex, plus leg restlessness, and hot flashes(but these are better due to effexor(which is sold for antidepressant but used for hot flashes with chemo). I guess the effexor also is to help with the roller coaster ride. Angela

    Wow that must have left you feeling abit panicky, wondering why you have that feeling without ovaries. And damn those hot flashes!
    Sometimes I'm glad I live in a cold climate :)

    Thanks for you input Angela and hope your side effects lessen in time.
    jan
  • MUDEAR
    MUDEAR Member Posts: 1
    #11
    Phoenix, I had severe vision problems with tamoxifen almost to the point of losing vision.
    It began with blurry vision and eye pain. I stopped it and the problem gradually cleared up.
    But one different thing for me was that my meds
    for my connective tissue disease also caused vision problems and I reduced that dosage before I quit the tamoxifen. My opthamologist said he
    thought that the tamoxifen was the culprit.
  • probi1
    probi1 Member Posts: 1
    #12
    I just finished my last radiation treatment in January of this year and was put on tamoxifen. While I do not have vision problems, I do have ulcerative colitus and find that the tamoxifen does cause me problems. Oh and let's not forget the hot flashes and muscle cramps, which usually happens at night when I'm sleeping. On occasion, I do have that feeling that my period is going to start to.

    As much as I worry about taking this drug, the idea of going through breast cancer again, leaves me no choice. I've heard that taking this drug also increases the chances of getting uterine and liver cancer. Is this something that I should worry about?

    Carol

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