Worried about brain mets

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mssunshine71
mssunshine71 Member Posts: 162
edited June 2014 in Not Diagnosed With a Recurrence or Metastases but Concerned

I've had this headache for about two weeks now.  Not excrutiating but will not go away.  I've been taking motrin a couple times a day and it never toally subsides. I've been having double vision off/on and still have numbness in my feet and fingertips from what I assume are lingering Taxol effects.  The onc. felt it was enough for a CT scan (can't have MRI because of TE) and put me on steroids for the headache.  The steroids have taken the headache away and most of the numbness in my feet :)  I still haven't heard from the CT dept about my appt. date.  I wasnt worried at all about brain mets but now im starting to obsess about it.  I won't hear anything until at least monday and have to wait for results after that.  If anyone that was diagnosed with brain mets can please tell me what their first symptoms where I would very much appreciate any info.

Waiting is the worst!

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  • MelsMontie
    MelsMontie Member Posts: 72
    edited April 2013

    Hey Sunshine, I am in the same boat with ya. I have constant headaches, dizzy, vision problems.. scares me. My first appointment will be next thursday with these symptoms. Hope we are both worried for nothing. I'll pray for both of us. please lean on The Lord!



    Melinda

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  • mssunshine71
    mssunshine71 Member Posts: 162
    edited April 2013

    Thank you for your response Melinda.  Good luck with your appt.  I hope we are worrying for nothing as well.  It's amazing what the mind can do to your body isn't it?

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  • mssunshine71
    mssunshine71 Member Posts: 162
    edited April 2013

    bump

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  • mssunshine71
    mssunshine71 Member Posts: 162
    edited April 2013

    went for CT today.  Have to wait till the 19th for results :S  

    Melinda - Are you still having symptoms?

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  • ahdjdbcjdjdbkf
    ahdjdbcjdjdbkf Member Posts: 645
    edited April 2013

    I'm in your club. I have worsening and pretty severe lower back pain and a recent big increase in major dizzy spells where I almost fall over. I went to see my cancer surgeon today and he is sending me for a PET scan. I don't have the date yet but I'm completely freaked out. I'm hoping for the best for all of us. This sucks!

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  • mssunshine71
    mssunshine71 Member Posts: 162
    edited April 2013

    Hello Mariasnow - I see you're not far out from treatment either.  Waiting is the worst!  Its so hard not to think about it but I worry half my symptoms are a result of obsessing possibly. Hope you get your date and results very soon!  Keep us posted.

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  • ahdjdbcjdjdbkf
    ahdjdbcjdjdbkf Member Posts: 645
    edited April 2013

    Thanks mssunshine. Another hard part is that people around me won't realize how scared I am. I feel like I'm wandering around in a deep haze. I had to check my work multiple times today and I keep finding mistakes. My brain is soooooooo tired from all of this. There doesn't seem to be a single day of peace.

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  • mssunshine71
    mssunshine71 Member Posts: 162
    edited April 2013

    I hear you.  I feel the same way.  Hang in there Mariasnow ((hugs))

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  • ahdjdbcjdjdbkf
    ahdjdbcjdjdbkf Member Posts: 645
    edited April 2013

    My boyfreind and I had a fight last night because of me being pretty much despondent. He wants me to be "Just be happy." Now we are barely speaking today and he is saying things are hopeless. My need for a PET scan could be his escape trigger - although probably not. He loves me dearly. Stage II and NED is one thing. Stage IV is a whole other thing though. I'm in trouble at work too. My mom has alzheimer's and my sister (a 6-year survivor) is gravely ill and they can't pinpoint the cause. I'm just one person.

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  • mssunshine71
    mssunshine71 Member Posts: 162
    edited April 2013

    Hi Mariasnow - Im sure these feelings with your boyfriend will pass.  They are prob being reflected by your worry and most men don't know how to deal with situations as these.  I wish I could sit and chat in person with you to help you through these difficult days.  You are right, you are just one person.  Do what you need to help YOU through this.  If that requires a bit of help from your doctor through medication or support services then please reach out and get the help you need.  I know the worry can be extremely immense as I am dealing with the same worry at this time.  If you want to chat feel free to PM me I will be happy to lend an ear.  My thoughts are with you. 

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  • mssunshine71
    mssunshine71 Member Posts: 162
    edited April 2013

    Melinda - thinking of you today on your appt.  Keep us posted pls

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  • ahdjdbcjdjdbkf
    ahdjdbcjdjdbkf Member Posts: 645
    edited April 2013

    Thanks mssunshine. My PET is tomorrow at 11:30. I don't think I will get results until next week. I really need to concentrate at work today and also get in some exercise and get out of this emotional paralysis just for one day. I have to take on some work for someone who is out of leave. What comes around goes around. It's my turn.

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  • mssunshine71
    mssunshine71 Member Posts: 162
    edited April 2013

    Everytime the phone rings i'm freaked out!  I had to take something for nerves today.  Have a followup with the BS from the BMX soon.  I can't imagine making it through till the 19th for CT results but I guess if they haven't called by tomorrow its prob nothing.  I had a scare before with my liver and ovaries that ended up nothing.  The steroids were effecting me in a bad way so I stopped them.  Now the headache is back in the exact same spot :S

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  • ahdjdbcjdjdbkf
    ahdjdbcjdjdbkf Member Posts: 645
    edited April 2013

    OK. The two MSs are hanging in today despite our worries. One thing that somehow made me feel a bit better today is I saw that dizziness is also a side effect of Herceptin - which I am on. And, I'm wondering if any of my dizziness is coming from that. But, no matter what, I won't know until I get the scan and the results. People who aren't in our boat or haven't been there don't understand the majorness of going from stage II to stage IV. There is NO going back.

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  • bevin
    bevin Member Posts: 1,902
    edited April 2013

    HI Mariasnow - good luck with your PET. I saw you wanted to excercise , I'm pretty sure you're not supposed to excercise the day prior or of your PET.  As well they normally direct a low carb diet.  Just wanted to make sure to share that as it can throw off your results.

    Good luck, we'll be thinking of you.

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  • ahdjdbcjdjdbkf
    ahdjdbcjdjdbkf Member Posts: 645
    edited April 2013

    Thanks, Bevin. I read online and you're right. No exercise. No carbs.

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  • mssunshine71
    mssunshine71 Member Posts: 162
    edited April 2013

    Good luck with your PET tomorrow Mariasnow.  Hope you're in a better place tonight. :)

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  • ahdjdbcjdjdbkf
    ahdjdbcjdjdbkf Member Posts: 645
    edited April 2013

    Thanks. I'm at treatment now. Waiting for PET results and now my doctor wants to send me for a brain MRI. One piece of news at a time I guess.

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  • ahdjdbcjdjdbkf
    ahdjdbcjdjdbkf Member Posts: 645
    edited April 2013

    PET scan came back clear!!! The theory of my back pain is that it is chemo or neulasta side-effects. Waiting for MRI to be scheduled. Glad to have gotten through another Herceptin.

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  • mssunshine71
    mssunshine71 Member Posts: 162
    edited April 2013

    That's great news about the PET Mariasnow!!!  My CT is also clear!!  I got the call from my onc on the way to the cottage fri night :)

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  • ahdjdbcjdjdbkf
    ahdjdbcjdjdbkf Member Posts: 645
    edited April 2013

    MS - so glad for us both!! I have a brain MRI scheduled for Thursday so I'm not in the clear yet but still very VERY pleased about the PET.

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  • mssunshine71
    mssunshine71 Member Posts: 162
    edited April 2013

    Good luck with your brain MRI today Maria.  Thinking about u.  I'm seeing my onc tomorrow as I am still having headaches and double vision.  Maybe its just an eye issue, who knows.

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  • ahdjdbcjdjdbkf
    ahdjdbcjdjdbkf Member Posts: 645
    edited April 2013

    Thank you ms! I'm hoping we both are just fine. I'm definitely scared. I woke up with a headache and Advil doesn't touch it. I had dizzy spells today as well. I'm glad this test is scheduled and I'm taking action.

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  • fd1
    fd1 Member Posts: 239
    edited April 2013

    Don't mean to jump in, but maybe the headache/dizziness could be caused by allergies?  I have some pretty random symptoms at this time of year and when I take Claritin, they resolve.

    So happy that everything worked out for you guys!

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  • ahdjdbcjdjdbkf
    ahdjdbcjdjdbkf Member Posts: 645
    edited April 2013

    I got my results today and am VERY HAPPY to report that I am still NED!!! My brain does show some abnormalities that they are attributing to "migraines associated with acute hypertension." Basically one part of my brain is very stressed and over-active. But I am thrilled my NED status continues another day. Wishing everyone else well!!!

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  • mssunshine71
    mssunshine71 Member Posts: 162
    edited April 2013

    Yay Maria!!!!  Thats great news :)  My onc said my CT was completely normal so he wasn't sure why I was still having double vision so now I see an optomitrist on monday. He also thought maybe the headache I'm having is actually bone pain from the Tamoxifen

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  • ahdjdbcjdjdbkf
    ahdjdbcjdjdbkf Member Posts: 645
    edited April 2013

    ms - at least we can go into the weekend with a very deep sigh of relief. Enjoy!!

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  • mssunshine71
    mssunshine71 Member Posts: 162
    edited April 2013

    went to the optomitrist and found out my eyes are healthy but my right eye turns in intermittently which is what is causing the double vision.  So no cancer.  So happy!!!

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  • Alicethecat
    Alicethecat Member Posts: 535
    edited April 2013

    Hello Ms Sunshine

    Congratulations! This is wonderful news. So pleased for you.

    I'm off to an ophthalmologist on Thursday to discuss having the cyst out in my left-eye socket. Apparently, the docs put numbing gel in the eye first before an injection. It's an easy procedure, a chemo nurse told me!

    Alice

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  • mssunshine71
    mssunshine71 Member Posts: 162
    edited April 2013

    Good luck on thursday Alice.  I'll be rooting for you!!

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