Tamoxifin and memory loss or Mets. Options?

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justamy
justamy Member Posts: 532
edited January 2019 in Hormonal Therapy - Before, During, and After

I have been on Tamoxifin and Lupron for 4 years. I have had bone pain that is severe enough that my oncologist thought a handicapped placard was necessary. I have also had memory problems from the start. I attributed it to chemo brain, but I now do not believe this is the case. My memory (specically word finding and forgetting what I'm doing) have become worse over time. It is now debilitating to the point that I avoid social interaction and fear driving. In nearly every conversation, I experience a lack of ability to have a meaningful conversation because I can't think of words or even my phone number or zip code at times.

I am considering having my ovaries removed. My oncologist told me if I do that I could go off of Lupron and Tamoxifin. Has anyone done this and does it help?

I also fear that it may be mets to the brain. I'm going to see my MO and get the necessary testing. This possibly scares the hell out of me. Not a good prognosis at all and Medicare does not cover much pallative care. I can't afford it.

I know I should wait and see but it's always at the back of your mind.


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  • leftduetostupidmods
    leftduetostupidmods Member Posts: 620
    edited January 2019

    Amy, unfortunately chemobrain is something that might not go away at all, and might get worse over time. I went through the same thing. First I was told it would go away in 6 months. Then 2 years. After 2 years, as it was not going away, I started freaking out (I have Alzheimer's history in my family) and had a head CT scan that came back free of plaque. Shortly after, oncologist told me that studies have just released results that for some patients chemobrain may be life-long side effect of chemo. I understand perfectly what you're going through. A couple years ago I started taking Gingko Biloba and Lecithin supplements and it helps just a bit. But just a bit. My life's song now is "OMG I was supposed to do this!", burnt food when cooking, missed appointments, forgetting to mail stuff out, etc.. I got all my bills on autopay and have a dry erase board to help me not forget what I'm supposed to do.

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  • justamy
    justamy Member Posts: 532
    edited January 2019

    Thanks for your response!

    My first thought was dementia as well. Both my great grandma and my grandma had it, but not until their 80's. My dad died in his 20's so obviously he didn't get it. It may very well be chemo brain. I have read studies that say exactly what you are describing. It's so hard to tell without imaging. I am going to quit Tamoxifin either way because it just has too many side effects. I'll have my ovaries removed. I'm not using them anyway...lol. I got in tomorrow to see MO (a perk of seeing a satillite doctor in my tiny town.) I'll go from there.

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  • edwards750
    edwards750 Member Posts: 3,761
    edited January 2019

    I took Tamoxifen for 4 years. First year I was on Arimidex. I can attest to the fact you have joint pain and difficulty concentrating. Joint pain was brutal at times but I was determined to stick with it. Idk what I would have done if my MO had insisted I stay on it for 10 years.

    Don’t assume the worst - I know that’s hard - but it may very well be a side effect of the drugs.

    We just can’t win sometimes. DX with BC is bad enough and now we have to deal with side effects of the treatments to prevent a recurrence. Such an insidious disease.

    Good luck. Keep us posted.

    Diane

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  • justamy
    justamy Member Posts: 532
    edited January 2019

    Thank you Diane! Cancer dx sucks for sure! Trying to assume the best but prepare for the worst.

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  • vlnrph
    vlnrph Member Posts: 1,632
    edited January 2019

    One reason women have their ovaries taken out prior to menopause is so they can use an aromatase inhibitor to further diminish estrogen production. Curious that the oncologist chose to prescribe tamoxifen when, due to Lupron suppression, anastrozole/Arimidex or one of the others might have been an option.

    Since justamy has a birthday coming up she will be 47 if my math is correct. Not too far from the average 'natural' age of 51 for cessation of menses but, having done extensive genealogical research, pregnancy is possible well into one's late 40s. That means birth control could be required for someone unless chemopause occurred, as verified by estradiol, FSH measurements, etc.

    I also agree that chemobrain is not just a short term phenomenon. What did the doctor say on Tuesday?

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  • Egads007
    Egads007 Member Posts: 1,603
    edited January 2019

    When I completed chemo 5 years ago I was left with what felt like permanent 'tip-of-the-tongue-itis'. I would literally be looking right at a coffee mug asking my DH to hand it to me while blethering "hand me that ….that....that....THING!!" My brain would register 'mug' but getting it out of my mouth seemed impossible. It happened A LOT. I started on Tamoxifen and over a 6 month to a year period my 'tongue-itis' slowly diminished.

    Fast forward to December 4, 2018 and completion of Tamoxifen.....within 2 weeks 'it' reared it's ugly head again. By Jan 1 it was driving me (and everyone around me) crazy. I started a new 5 year stretch of Femara on Jan. 5th and it's slowly going away again (fingers crossed)

    Permanent chemo fog-itis lessened by a anti-hormonal perk? Coincidence? I dunno. All I'm sure of is that I'll be preparing myself for the frustration and speech therapy classes in 2024.

    :)

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