Double vision from Tamoxifen. Permanent? Alteratives?

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SccS
SccS Member Posts: 78

Hi all.

My wife has stage III, ER positive, got Taxol, then mastectomy with reconstruction, followed by AC chemo, followed by radiation. All that was 3 years ago. She is 44 now. 

Been on Tamoxifen since March 2013. She has been handling Tamoxifen relatively fine. But started having double vision around the time she started taking it. She didn't pay attention to that.. but recent that double vision gotten worse. Her oncologist sent her to an ophthalmologist who found nothing, no signs of cataract or anything, just slight vision deterioration that is NOT related to double vision. So even with those glasses in ophthalmological chair she continued having double vision.  

Then she was sent to a onco-neurologist who took brain MRI. Nothing.  

Back to her oncologist who took her off Tamoxifen to see if problem would go away. She mentioned that she can put her on Fareston if it's evident that Tamoxifen caused that.... It's been 4 weeks and her double vision did not improve at all. 

I've found some posts here on the forum about different vision problems people having as side effects of Tamoxifen. But nothing about double vision. I only found this link:

http://www.ehealthme.com/ds/tamoxifen+citrate/double+vision

It says there that none of patients got double vision improved even after discontinuation of Tamoxifen:

---------------------

How people recovered from Double vision ** :

while on the drug 0.00%

after off the drug 0.00%

not yet 100.00%

---------------------

Has anybody here had double vision from Tamoxifen? Is it permanent? I've heard that Fareston has similar side effects. .. How is she going to survive without Tamoxifen?

Comments

  • coraleliz
    coraleliz Member Posts: 1,523
    edited June 2015

    Sometimes my brain has trouble with this. When I look at my phone, I see two of every app. My brain eventually figures it out. i thought it might just be when I'm tired but sometimes it happens when I'm not. Sometimes my closet door is doubled, my brain always seems to figure it out eventually. I've been on tamoxifen for just over 3 1/2yrs. I just always assumed this was part of my vertigo/dizziness/head spinning & clumbsiness that was brought on by starting this drug. My opthamologist says I have "maturing cataracts" . Don't really know if they were there before BC, didn't have my eyes checked prior to starting the drug. My eyes have really taken a hit. I no longer like to read. I really need to stay on this drug for 5years, I narrowly avoided chemo, so it's all I got. Cataract surgery will be in my future.

  • Mimi8
    Mimi8 Member Posts: 51
    edited June 2015

    My vision is marred by having downbeat nystagmus after having both chemo and Femara. My vision isn't double but it bounces annoyingly. Normal opths didn't find it, only a neuro Opth knew what it was. As far as I know, there is no cure .

  • Mimi8
    Mimi8 Member Posts: 51
    edited June 2015

    My vision is marred by having downbeat nystagmus after having both chemo and Femara. My vision isn't double but it bounces annoyingly. Normal opths didn't find it, only a neuro Opth knew what it was. As far as I know, there is no cure .

  • SccS
    SccS Member Posts: 78
    edited June 2015

    Mimi8,

    Did you also chose to stay on Tamoxifen inspite of this? This is what we need to decide now. 

    How do we find a neuro-ophtalmologist?

  • SccS
    SccS Member Posts: 78
    edited June 2015

    We made an appointment to a neuro-ophtalmologist next month. Can anyone else share their experience with vision issues from Tamoxifen and whether you chose to keep taking it?

  • Carol1028
    Carol1028 Member Posts: 1
    edited March 2017

    I'm so sorry to hear about your wife's problems. I had severe double vision after taking Tamoxifen for 2 years. None of my doctors could figure out what was causing it, and it was quickly becoming debilitating. I was so scared, the doctors had me going to neurologists who also couldn't find anything wrong with me and finally, a friend suggested I try going off the Tamoxifen. I mentioned this to my doctors who all said that it could not be the Tamoxifen but then said it was okay to go off it if I felt strongly about it. It took only 12 days and my sight completely recovered, my doctors were all very surprised (to say the least). I live in Boston, and went to the Dana Farber for my treatment - you would think that at least one of my doctors would have suggested going off the Tamoxifen. I also had a lot of cognitive issues - it's a dangerous drug and should not be given out like jelly beans! I hope your wife's eyesight is better.

  • Moderators
    Moderators Member Posts: 25,912
    edited March 2017

    Dear Carol1028,

    Welcome to the community and thanks for sharing your story. We hope that you will stay connected here on the boards. This particular thread has not been active for almost 2 years. You may want to start a new topic Let us know if you need help navigating your way around. The MOds

  • SccS
    SccS Member Posts: 78
    edited March 2021

    Carol1028,

    My wife's double vision was not as severe as yours and it improved very slowly after she changed to Fareston. But the bad news.... and it's much worse news is.... that her cancer came back all over her body... she is now stage 4. We don't know if that's because of switch to Fareston or not... but it's possible. Her first symptoms started manifesting immediately after the switch to Fareston (or perhaps eve of before?) but doctors missed them. One more year passed until they found it out... We don't know whether it has anything to do with Tamoxifen vs Fareston... She was still pre menopausal when she was put on Fareston (and still is now but chemo caused menopause).

  • Suzanne50
    Suzanne50 Member Posts: 280
    edited September 2017

    I read these posts with great interest as I recently started having double vision. It came on very suddenly. Went to ER and had a bunch of tests to rule out things. I have been taken off Tamoxifen - my oncologist seems to think that is the culprit. I wake up every morning hoping for some improvement and so far none. It has only been two days but I can't drive, work or anything. It is very scary. I really hope that this will resolve itself. My brain MRI was clear. Thank goodness. That was a scary thought. They also tested me for lyme. Haven't gotten those results back. I was on tamoxifen for 1 1/2 years and out of nowhere, this happens.

  • Bosombuddy101
    Bosombuddy101 Member Posts: 182
    edited September 2017

    I truly believe that in my particular case double vision was one of the earliest symptoms that cancer was present in my body. Of course, I didn't know this at the time. Here is a link that is very informative:

    http://www.the-lasik-directory.com/article_cancerandvision.html

  • marijen
    marijen Member Posts: 3,731
    edited October 2017

    Send to

    2011 Oct;36(10):867-85. doi: 10.3109/02713683.2011.594202. Epub 2011 Aug 5.

    Breast cancer medications and vision: effects of treatments for early-stage disease.

    Eisner A1, Luoh SW.

    Abstract

    This review concerns the effects on vision and the eye of medications prescribed at three phases of treatment for women with early-stage breast cancer (BC): (1) adjuvant cytotoxic chemotherapy, (2) adjuvant endocrine therapy, and (3) symptomatic relief. The most common side effects of cytotoxic chemotherapy are epiphora and ocular surface irritation, which can be caused by any of several different regimens. Most notably, the taxane docetaxel can lead to epiphora by inducing canalicular stenosis. The selective-estrogen-receptor-modulator (SERM) tamoxifen, long the gold-standard adjuvant-endocrine-therapy for women with hormone-receptor-positive BC, increases the risk of posterior subcapsular cataract. Tamoxifen also affects the optic nerve head more often than previously thought, apparently by causing subclinical swelling within the first 2 years of use for women older than ~50 years. Tamoxifen retinopathy is rare, but it can cause foveal cystoid spaces that are revealed with spectral-domain optical coherence tomography (OCT) and that may increase the risk for macular holes. Tamoxifen often alters the perceived color of flashed lights detected via short-wavelength-sensitive (SWS) cone response isolated psychophysically; these altered perceptions may reflect a neural-response sluggishness that becomes evident at ~2 years of use. The aromatase inhibitor (AI) anastrozole affects perception similarly, but in an age-dependent manner suggesting that the change of estrogen activity towards lower levels is more important than the low estrogen activity itself. Based on analysis of OCT retinal thickness data, it is likely that anastrozole increases the tractional force between the vitreous and retina. Consequently, AI users, myopic AI users particularly, might be at increased risk for traction-related vision loss. Because bisphosphonates are sometimes prescribed to redress AI-induced bone loss, clinicians should be aware of their potential to cause scleritis and uveitis occasionally. We conclude by suggesting some avenues for future research into the visual and ocular effects of AIs, particularly as relates to assessment of cognitive function.

    PMID:
    21819259
    PMCID:
    PMC3205820
    DOI:
    10.3109/02713683.2011.594202
    [Indexed for MEDLINE]
    Free PMC Article
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  • Suzanne50
    Suzanne50 Member Posts: 280
    edited September 2017

    My update is I am still experiencing double vision. I had a clear brain/neck MRI. They tested my spinal fluid for a whole bunch of things - one of them cancer, all clear. No lyme. No tick born diseases. No diabetes. No MS. They are calling it "idiopathic" - meaning they don't know cause. Oncologist thinks it's a virus. Neuro - ophthalmologist says it may take 12 weeks to work itself out. Meanwhile - no tamoxifen. I am done with that drug.

  • San1971
    San1971 Member Posts: 4
    edited February 2019

    About three weeks ago, I noticed I had double vision. At that time I had had headaches on and off for a couple of weeks - I never had headaches before. Apparently there are hardly any benign reasons for double vision if it occurs with both eyes open. I was told that even without a history of cancer all cases of double vision are immediately seen as an emergency condition.

    So within two weeks I saw an optician, an opthalmist, a neurologist and my oncology nurse, and I had a brain MRI and a blood test. All results are fine: no brain tumor, no MS, no diabetes, no aneurysm. I am quite relieved. So most likely it's either an infection of the eye nerve (?), or a side effect of the Tamoxifen. I share this with you guys because obviously I was concerned that it was a metastasis.

    It does surprise me though, because I have been taking Tamoxifen for almost 4 years now, and the last two years I only took half a dose. So I'm not new to the medicine and I don't take much. I have now quit Tamoxifen to see if things improve.

    Suzanne50, if you're still on this thread, did your double vision improve, and after how many months? Hope to hear!


  • Suzanne50
    Suzanne50 Member Posts: 280
    edited May 2019

    Hi everyone! I am updating this thread. I suffered from severe double vision for at least 9 weeks. At that point I started to see some improvement. The point at which I saw double slowly started to get farther away. I got to the point (around 12 weeks) where I no longer needed a patch as long as I kept my head down looking at the ground. At 15 weeks I returned to work and my vision was pretty much normal.

    The doctor told me that I must have gotten a virus that landed on my 6th nerve which caused a 6th nerve palsy. It took all those weeks for the nerve to repair and go back to normal

    I will tell you that those were some pretty scary weeks. I didn't know for a long time if this would ever improve. But thankfully it did!

  • San1971
    San1971 Member Posts: 4
    edited May 2019

    Thanks for updating us Suzanne!

  • Salamandra
    Salamandra Member Posts: 1,444
    edited May 2019

    I'm so glad your vision is back to normal! What a terrifying ordeal.

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