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Brain Mets Sisters

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  • mommyx3
    mommyx3 Member Posts: 13
    edited November 2011
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    My brain mets have too shrank once again.  I don't know the specifics yet because my dr won't be in until tuesday, but my nurse look at the scan for me and said there is clearly shrinkage and no new tumors have formed.  There is hope!

  • TallM
    TallM Member Posts: 1,070
    edited November 2011
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    mommyx3!!!

    Yahoo!!! Great news. Wow I'm so glad to hear that. Way to keep those little sucker away. I'm doing a happy dance for you too:). Truly a great weekend for you:).



    Hope this week is good to all of you & we keep up the strong fight. I know all of you give me strength & it helps to know we are not alone in this.



    Fight on:) Hugs to all

    -Malinda

  • luvmyself
    luvmyself Member Posts: 58
    edited November 2011
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    My 2 brain mets where found in May 2011. 1 cm each, one on my left side and one on my right side. I was able to have a craniotomy to drain a cyst that was attached to one of the tumors followed by gamma knife.  I just had my first 3 month mri and one of the tumors is completely gone and the other is shrinking with no new ones!  I'm currently on Abraxane and herceptin and just had a petscan. Hoping for great results!!

    Hugs to all :)

    Jill

  • TallM
    TallM Member Posts: 1,070
    edited November 2011
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    Jill-

    Great news for you too!!! Its nice to hear positive feedback & good results. Fingers crossed for the PET scan to come back well. Amazing all this technology that's out there to help us.



    I have cousins that live in Chandler. It's a fun city:) I love the cheesecake factory. We now have 1 here in Utah:)



    Hope everyone has a great week & keep the good news coming.



    -Malinda

  • imbell
    imbell Member Posts: 61
    edited November 2011
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    Happy dance  and positive vibes. Smile

  • TallM
    TallM Member Posts: 1,070
    edited November 2011
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    Hi all-



    Today my ong was so impressed w/my result of chemo tx. I only need to do 1 day a week of brain Chemo (for the next 3 week) because every time the they've tested the spinal fluid it's been negative. After the next 3 weeks using Methotrexat I'll then switch to Herceptin in my spine for a few weeks then do a repeat MRI. WOOT! WOOT! That means only 2 days a week for Chemo:) 1 for body & 1 for brain! Yahoo!



    BTW-do any of you not recognize yourself when you look In a mirror? My bodies morphed so much I only recognize myself because my lips move or eyes blink:o



    Have a great night

    -Malinda

  • banjobanjo
    banjobanjo Member Posts: 187
    edited November 2011
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    Malinda, congratulations - I'm happy for your good news.  I too, look like a distorted version of myself.  I wonder if we will ever look like our old selves again?

  • alesta29
    alesta29 Member Posts: 240
    edited November 2011
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    Great news Malinda - looks like chemo is working it's magic!

    I look very strange, now I have lost my brows and lashes. Didn't bother me losing my hair so much, even though there was lots of it but the eyebrows and lashes.... I just look really weird! I've bought some false eyelashes but my eyes are so runny and crusty from the Docetaxel that it's just going to be a real mess if I add glue into the mix Frown

    Hey ho. They'll grow back. Eventually.

    Lx 

  • TallM
    TallM Member Posts: 1,070
    edited November 2011
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    Good Morning!

    Here are some sites I got from some other forums. They are really nice head covers & I thought you enjoy them too:) I hope you all have a a great day!



    For those of you in need of a pretty head cover - try this site

    http://www.gailafund.org/site/index.php

    They will send you a free one if you are losing your hair.   



    Another source for a free headwrap is

    http://www.franceluxe.com/i/goodwishesscarves/GoodWishesScarves.html



    Here are a few links for sewing hats. Some are free patterns and some you have to buy.

    http://www.brimmingwithlove.com/patterns.html

    http://www.nancysnotions.com/text/pdf/CKEasyHat.pdf 

    http://www.fmfcorp.com/familyspot/haircover.html#Sewing 









  • imbell
    imbell Member Posts: 61
    edited November 2011
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    Finished 10 WBR today, Felt really good, Techs said it was due to tx. So I am in the kitchen pouring iced tea into a pitcher and my left leg must have given out because I crashed taking my poor DH with me,  He has physical issues of his own. Hope he can get around tomorrow, Back to the wheelchair before I take everyone out. Wondering if it is radiation or is it neuropathy or all of the above.

  • chainsawz
    chainsawz Member Posts: 113
    edited November 2011
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    (((imbell)))

  • thats-life-
    thats-life- Member Posts: 169
    edited November 2011
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    what a great group of women you have developing here..wishing you all great success with your treatments. Could you help me with something?..im having a brain MRI next wednesday..because of unusual headaches, vision issues, fatigue...it could all be just living with cancer issues, but onc wants a brain MRI..and the top of the spine MRI'd...When i had the first spinal MRI at dx, I did have a bit of panic during it, and had to come out for a break. Im good at handling things if im prepared...so (sorry if the Questions seem silly)...do I have to have a contrast dye?..they said i do...where do they inject the contrast? still in the arm?..does it rush through you like with a CT contrast? how long are you in with the clanging and banging once the contrast has been injected..what is it like to have a brain MRI? i hope i can do it without a mini panic attack..:)

  • banjobanjo
    banjobanjo Member Posts: 187
    edited November 2011
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    The brain MRI is much shorter than a normal MRI so stay calm, focus on your breathing (I don't mean count it or anything, but just being aware of your breath going in and out is a good way to keep as relaxed as possible in a stressful test).  The contrast goes in your arm, I didn't feel any particular reaction from it.  I was very scared but it was a million times more easy than a normal MRI which seems to go on for ever. 

    Hope all goes well,

    Barbara 

  • TallM
    TallM Member Posts: 1,070
    edited November 2011
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    Thats-life: I would do the contrast for sure. My tumor didn't show up w/o the dye or even on a CT! When I went it was about 20/30 mins or so. I find the noise of the MRI more annoying than anything so I always ask for the earplugs. The music is nice w/headphones they offer but they don't block out as much of the noise. 1st they did a regular MRI. About 15 mins. Then they put in an IV type access in the arm of your choice & put a small amount of contrast dye in. Next they will do another 10/15 min. They had to run the last part again on me w/the contrast dye so mine was an additional 10 mins.



    When I'm in there I just pretend like I'm a statue & I make sure before I start that I'm really comfortable (as much as can be:) Then banjo has a good suggestion. Focus on breathing or being some place you'd like to. Imagine yourself on a warm beach, or somewhere you enjoy.



    I'm sorry you've had some of the symptoms & you are going to have an MRI. I hope all goes well & you can make it through. BTW-there are no silly questions:)



    I wish you the best & I agree there are som great ladies here:)



    Happy Thurs to all & fingers crossed the the SE stay away or at least to a minimum:)

    Hugs-

    Malinda

  • thats-life-
    thats-life- Member Posts: 169
    edited November 2011
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    thanks so much both of you. They had the oprah show on tv when i had my spinal MRI..but i couldnt hear it for all the clanging...lol..i tried to stay calm but didnt succeed. I will use your tips..bloody stressful this disease isnt it. Thank you all for being here.

  • jintski
    jintski Member Posts: 23
    edited November 2011
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    Sorry for butting into your thread, but reading it has given me some hope!

    I was diagnosed yesterday with Brain mets (Primary 2006) Bones (april 2010) Liver )December 2011). 

     I am in that dreadful place that I'm sure a lot of you can identify with! I just can't stop the tears! I am so scared.  I am due to have WBR on Tuesday and am terrified.  I would like some of your experiences of this proceedure and expected SEs.  The oncologist scared me by saying the hairloss could be permanent - is that what you have found? I have been given some steroids to take, but haven't yet as last time my face ballooned so much I looked freaky! Do I need these? What about loss of memory or muscle weakness, I know that they have to inform you of the worst case scenario! I am scared of losing cognitive function, or speech and memory! I have had my future taken away I don't want my past removing too!

     I should be ER/PR+  but all AIs + faslodex have failed, I started Xeloda chemo in August, but yesterdays scan also showed liver progression, so I guess it'll be something stronger now - It all quite frankly sucks! I am HER neg, so herceptin not an option!

     Sorry for all the moaning and the questions, at all stages, even Liver progression I have been calm, accepting and ready to fight! Now I just feel helpless and bewildered! 

  • banjobanjo
    banjobanjo Member Posts: 187
    edited November 2011
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    jintski,

    Just been through this, sending you a PM,

    Barbara 

  • TallM
    TallM Member Posts: 1,070
    edited November 2011
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    jintski: I'm sorry you are going through this. You in no way are budding in. It sounds like banjo has your back w/a PM. She has good advice from what I've read on hear. It is scary when you find that it's spread & your mind can go crazy thinking of everything. When I was told I had breast cancer I thought ok I can deal. Then found it spread (as you can read under my post). Finding out about a week latter that it had gone to my brain started everything all over.



    They do need to tell you everything to inform you & protect them. I've been through 6 brain Tx w/Chemo spinal infusion (lumbar puncture) where they take out 6cc spinal fluid & put 6cc Chemo Methotrexate. I was told it's a pure poison & my memory would be affected. I have 3 more Tx with this Chemo & then they'll switch to Herceptin for 4 weeks then repeat the MRI. One of the things I have notice is that I'm not able to multitask as well as used to so now I focus in 1 thing at a time.



    I was very nervous that my memory would just go. NOT the case. I still remember the past memories & in fact some came more clear. I was also told calculations (left brain) would become difficult. I'm a nurse & MUST do med calculations for patient meds etc. So far I've not noticed a loss. Secondly I'm a professional musician & teach @ a university. I was told I may/may not remember my music (or my memory would only remember music:o) So far my music side (rt brain) has been as usual.



    I believe the brain/mind is VERY powerful & can reconnect new pathways to function on a "normal"/usual level. I do alot of imaging/visualization & see the meds going directly where they need. Because of this I believe that's why the Dr are in such awe at my progress & the shrinkage of my tumors after just 1 cycle (3 weeks of Tx).



    I don't know if this helps you but I will keep you in my thoughts. It can be scary, but talking about it is very healing in itself. It shows your accepting it & ready to attack & move on.



    I'm going to send you a PM that I posted on here some time ago from a friend who asked how I can be so positive when reality of what might happen.



    I wish you the best!

    -Malinda

  • bestfriend05
    bestfriend05 Member Posts: 70
    edited November 2011
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    Hello all, just joined this forum...been diagnised with breast cancer first in sept then brain mets only by chance a few weeks later due to unusual symptoms. had brian surgery and then masectomey in a span of 8 days..phew..! now waiting for radiation to brain and chest area..if any of u lovely ladies would be kind enough to share some info form your experince with me i would be really grateful..love to all xx

  • TallM
    TallM Member Posts: 1,070
    edited November 2011
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    bestfriend05:WELCOME! You've come to a great group of ladies & an awesome support. I'm sorry to hear & I'm sure you were shocked. I found out 1st about my breast cancer then by chance as well due to headaches about brain mets:o It was like finding out all over again. I felt like the infomercials but wait there's more. 1st to both breast then more test to both axiary lymph, to bone, liver & brain. I kept saying really. I felt like I was watching a movie as the world went by in slow motion.



    I'm now in my 2nd cycle of body Chemo & going on the 6th Tx for brain Chemo via spinal infusion (lumbar puncture). I've found taking it a day @ a time is best. I have an overall plan & goal (SX this spring, then rads, & more Herceptin). That's a bit overwhelming so a day at a time works for me:)



    I'm single (thank goodness no kids/family to involve) so that is a blessing. I have a great support group & my parents/family/friends have been so supportive. I hope you have a good support group.



    Well, I've rambled enough. I don't know if it's the Chemo or what, but I've become really wordy:o



    Take care & know that you're not alone in this. We will all be there w/you



    Hugs

    -Malinda

  • bestfriend05
    bestfriend05 Member Posts: 70
    edited November 2011
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    hi mallinda..!

    thanku so much for your reply, i am actually posting on behalf of my mom. yes it is pretty devastating, need to cope with so much.., u sure have been through a lot and still keeping your spirits up, kudos to u..all u girls are fighters and very courageous for sure..i hope and pray the very best for all of u..and big and warm hugs back..xx not looking forward to radiation, but trying to keep spirits up xx

  • Joyce4123
    Joyce4123 Member Posts: 7
    edited November 2011
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    My daughter had a craniotomy for one met that wasn't responding to the SRS she received in April and is now in rehab.  Not doing as well as we had expected, but doing p.t. every day and taking baby steps.  I believe some of her issues stem from WBR she had back in June of 2010.  However the neuro surgeon didn't tell us to expect what we are seeing so we are a bit concerned.  However we take her to see him on Monday and hopefully get some questions answered.  I'm happy for your good news and hopefully my daughter will be much improved too!  My best to you all.

    joyce

  • imbell
    imbell Member Posts: 61
    edited November 2011
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    Rinished 12 WBR today. Got to keep my Hannibal Lecter mask. Tech said I shouldn;t feel any more tired than I feel now. Hope he is right> My legs are really weak. Radiation or SE;s?

    /

  • TallM
    TallM Member Posts: 1,070
    edited November 2011
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    From one of the other discussion boards of great ladies I belong to that have great info. Thought I'd pass this on: I tried this today and it worked great. I did not wrap the tails around or use an addition scarf for accent (who has time for all that tying and acents) , but just tucked them in the back into sort of a rosette sort of knot.   Looks really cute and it is soft cotten- very comfy.

    http://www.youtube.com/watch?v=tNOY4cS_k7A&feature=youtu.be&noredirect=1



    Hope all are well today:)

    -Malinda xx

  • MCTHO
    MCTHO Member Posts: 44
    edited November 2011
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    It's been eight months since I had my WBR.  Had a brain MRI this morning, and the doctor said there was no evidence of disease!  If I were in shape, I would have done a back-flip!  Laughing  Anyway, just wanted to share my good news!
  • TallM
    TallM Member Posts: 1,070
    edited November 2011
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    MCTHO:Yahoo. I'm doing back flips here-virtual ones:) And I'm doing a happy dance for you-that I can do. Congrats to you & the great news! I hope you can celebrate doing something fun:) Yahoo to you & thanks for sharing the good news:)



    -Malinda xx

  • alesta29
    alesta29 Member Posts: 240
    edited November 2011
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    MCTHO

    That is such great news. Hope you are going to find another way to celebrate - don't think I could do a back flip either but am joining Malinda in a happy dance around the kitchen!

    Laurie x 

  • K-Lo
    K-Lo Member Posts: 826
    edited November 2011
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    Glad to hear so many positive reports.

    Any eye involvement? Anyone anyhow anyway? Iz I'm alone? I can't like that, as Zoh's Susan would say.

  • banjobanjo
    banjobanjo Member Posts: 187
    edited November 2011
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    MCTHO,

    Waving and cheering here for you!  Fantastic news.

    Barbara 

  • Survivor2Be
    Survivor2Be Member Posts: 70
    edited November 2011
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    Ladies I'm glad I found this post! I have spoken with a couple of y'all. I was diagnosed with brain metastasis in 10/2011. Right now I am recovery in the hospital from the brain surgery to remove the tumor. Burning question is whole brain radiation. Please share your insights into y'alls decision. Did you do it? Was it a "no-brainer"? :). How was the recovery? Thank you sisters!!