Vision problems. Tamoxifen or brain mets?

Options
dearjilly
dearjilly Member Posts: 102
edited July 2014 in Hormonal Therapy - Before, During, and After

Hello everyone,

I'm looking for some words of wisdom and hope here.

I have lost some of my peripheral vision.  It's actually difficult to read the computer screen as I type.

I have an MRI scheduled for 8:30 tomorrow morning to rule out brain mets.  Apparently, tamoxifen causes vision problems in very rare cases.  I am hoping that that is what is the problem.  I am 33 years old and have 2 small children.  I'm scared.

I don't have any other brain met symptoms, so that makes me hopeful.

Has anyone experienced this?  The oopthomologist said he couldn't see anything wrong when I went to emerg yesterday.  He also said that sometimes, people with vision problems that are on tamoxifen go off of the drug and everything goes back to normal.  I have taken myself off of the drug, since I was only 2.5% ER+, my doc said we put me on it, and see how the side effects affect me.  So, I made a big decision this weekend and took myself off.  I'll see my doc tomorrow and discuss.

I just can't help but to think about this.  I am going on my big, I killed cancer, trip and I'm leaving Friday.  I just want to look forward to it, but I just can't now.

Thanks for listening.

Much love. Jill xo

· Share on FacebookShare on Twitter

Comments

  • sweetbean
    sweetbean Member Posts: 1,931
    edited September 2012

    Jill, I haven't had this side effect, but I just wanted to send you a hug.  I'm sorry that you are having this stress and I am hoping that it is nothing - just dumb ol' Tamox!

    · Share on FacebookShare on Twitter
  • dearjilly
    dearjilly Member Posts: 102
    edited September 2012

    Thanks very much for the hug. I'm hoping for the same thing.

    · Share on FacebookShare on Twitter
  • dearjilly
    dearjilly Member Posts: 102
    edited September 2012

    An update....i got bad news today. I have a single brain met and i see the surgeon tomorrow morning. Feeling very down. Jill

    · Share on FacebookShare on Twitter
  • cmbear
    cmbear Member Posts: 1,086
    edited September 2012

    Jill, I was just going to say that my eyesight has been fuzzy since I started Tammy and then I scrolled down and saw your final post. I am so sorry! ((((HUGS))))) Glad you are seeing your surgeon tomorrow so you can get a plan in place. 

    · Share on FacebookShare on Twitter
  • 1cb
    1cb Member Posts: 26
    edited September 2012

    I just Wanted to send you a note to say I am thinking about you and am sending positive vibes your way. I too was diagnosed at 32 while breastfeeding .... I am so sorry you are going through this. Please keep up updated on what the surgeon says tomorrow.

    Best wishes

    · Share on FacebookShare on Twitter
  • peggy_j
    peggy_j Member Posts: 1,700
    edited September 2012

    Oh no! I'm so sorry to hear this. I wish this wasn't the news. (((hugs)))



    Not sure if this is a Tx option but I know a lung cancer patient who had her brain mets successfully treated with radiation. It was a new Tx about 3 yrs ago--the beams come in from two directions and meet at the tumor and don't damage healthy cells. I believe the machines are not everywhere but they have one at Stanford, for example. Again, nor sure if this is an option but FYI. I'll be thinking of you today and sending positives vibes.

    · Share on FacebookShare on Twitter
  • sweetbean
    sweetbean Member Posts: 1,931
    edited September 2012

    Oh Jill, I am so sorry to hear this. Do you know your treatment plan yet? (Sending you an even bigger hug.)

    · Share on FacebookShare on Twitter
  • bgirl
    bgirl Member Posts: 538
    edited September 2012

    Jill, so sorry to hear your news.  Sent you a PM as it is more private.

    · Share on FacebookShare on Twitter
  • dearjilly
    dearjilly Member Posts: 102
    edited September 2012

    Hello everyone and Jane, got your message.  Nice to hear from you again.

    I am getting ready to go to LA.  I leave tomorrow.  I know it's a risk, but I still have to life a little over here!!  lol

    I have tickets to see Ellen, so I'm GOING!! 

    Thanks for the support.  I am pushing through and I will probably start gamma knife Oct 1st ish.

    I'll keep you posted on my progress.

    Much love, Jill

    · Share on FacebookShare on Twitter
  • bgirl
    bgirl Member Posts: 538
    edited September 2012

    Jill, Hope you have a fab time.  Live life every day and laugh.  And give those babies a kiss & hug.

    · Share on FacebookShare on Twitter
  • DiDel
    DiDel Member Posts: 1,329
    edited September 2012

    Jill

    Just saw your post so sorry for your recent news. Everyone is here to support you along the way. Have an amazing time at Ellen and safe travels.

    Diane

    · Share on FacebookShare on Twitter
  • Timbuktu
    Timbuktu Member Posts: 1,906
    edited September 2012

    I just read in People Magazine how Penny Marshall had brain cancer and lung cancer and now, after surgery, chemo and rads is cancer free.  Don't give up hope!  They can work miracles!!!!  (((hug)))  

    · Share on FacebookShare on Twitter
  • Bondgirl
    Bondgirl Member Posts: 140
    edited September 2012

    My heart goes out to you.  When I first read your post I was prepared to respond with my own experience of vision problems. I had a swollen optic nerve in February. Docs would never attribute it to tamoxifen but my gut tells me that is what is was.  I am also dealing with a recurrence scare (probably either lungs or liver). TM's up but scans still not showing anything.  It's just so frightening.

    On another note, a co-worker of mine was diagnosed last year with grade IV brain cancer (that is the worst of the worst). She had surgery, radiation and chemo and is doing well almost 18 months later. NED. I know it's not the same but her situation was incredibly dire so there is always hope.

     I hope that whatever treatment they decide on knock that stinkin met out of the park. Good luck and hugs. :)

     Tera

    · Share on FacebookShare on Twitter
  • peggy_j
    peggy_j Member Posts: 1,700
    edited September 2012

    I just read in People Magazine how Penny Marshall had brain cancer and lung cancer and now, after surgery, chemo and rads is cancer free. Don't give up hope! They can work miracles!!!!

    Wow, I hadn't heard that. Always great to hear success stories! 

    Jill, have fun at Ellen. Maybe you can email her about how this is a special trip and she'll do something nice for you??? (or if you don't want to do it yourself, PM me with your name and the date of your tix and I'll email Ellen for you! Seriously) 

    · Share on FacebookShare on Twitter
  • melmcbee
    melmcbee Member Posts: 1,119
    edited September 2012

    Jill so sorry about the news. Live it up and enjoy yourself and know we are here supporting you every step of the way. Hugs

    · Share on FacebookShare on Twitter
  • dearjilly
    dearjilly Member Posts: 102
    edited October 2012

    Hello everyone! 

    Sorry it's taken me so long to get back to you all.  I read every post, while I was in LA.  You all helped me out, when it was difficult to be there, because my new vision was very hard to get used to.

    I danced with Ellen!  I did the Gangum style! lol  I'm glad I went, because it felt like an accomplishment.  I was nervous that I should have stayed home, but the neurosurgeon's were meeting the day after I got back, so I was just going to sit around and think anyway.

    PeggyJ, they actually did a survey before we went in asking about breast cancer stories, I guess for BC awareness month.   They called my name after the show and took my picture and my phone number.  I haven't gotten a call, but it was kinda neat anyway. :)

    When I returned, I went in on October 1st and actually had the radiosurgery done.  It was kinda poopy, but I got through it and it's done.  I had to wait the whole day with this thing screwed in to my head, while they mapped out how they were going to zap it with those giant freakin lazer beams! lol

    All is well, except the vision problem.  I'm hoping that the first neurosurgeon was right, in the regards to that when the swelling goes down, my sight should get better.  The radiosurgeon doc said I should prepare for the worst.  I'm a firm believer of miracles and the body can work in many different, pleasant ways to rewire itself.  Time will tell.

    Anyway, thanks for listening and thanks for your support.  I really do feel less alone with all of you and I hope I can make you feel the same.

    Much love Jill xoxo  check out my gross pics of the surgery if you want.  www.facebook.com/jillsjourney

    · Share on FacebookShare on Twitter
  • bgirl
    bgirl Member Posts: 538
    edited October 2012

    Jill, so happy you had a good time.  Will be praying for you to get your sight back.  You deserve something good to happen.

    · Share on FacebookShare on Twitter
  • sbetts
    sbetts Member Posts: 35
    edited July 2014

    does anyone know how Jill is doing?

    · Share on FacebookShare on Twitter
  • dearjilly
    dearjilly Member Posts: 102
    edited July 2014

    I'm here!

    Thanks for getting my butt back on this Forum!!

    I've been busy, I guess.  Crazy couple of years, but I'm still here!!! xoxoxox

    Thanks for checking up on me sbetts!

    · Share on FacebookShare on Twitter

Categories