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Brain Mets Sisters

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K-Lo
K-Lo Member Posts: 826

Starting this for a friend.

Edited to explain that the friend was imbell who was feeling overwhelmed by wbr. She helped us all by starting this. Shes in peace now. See you in the clouds, imbell.
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Comments

  • chainsawz
    chainsawz Member Posts: 113
    edited November 2011
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    Hey there!!  I had my brain mets treated 2 years ago :>

  • banjobanjo
    banjobanjo Member Posts: 187
    edited November 2011
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    I've had brain mets from first diagnosis - on WBR just now - nice to meet you, 

    Barbara 

  • K-Lo
    K-Lo Member Posts: 826
    edited November 2011
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    Are there limitations on driving when you've had interventions?

  • imbell
    imbell Member Posts: 61
    edited November 2011
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    Thank you Will be looking for day to day anwswers. Started 12 day WBR last Tuesday for multiple lesions the biggest 12 mm.  The WBR going well. The legs are rubbery. Is this a SE. I seem to be thinking okay but can't seem to record TV programs. My dexterity is shot. I also had an infection for which I just finished the antiobiotics. Didn't help the rubbery legs. Medical team only interested in WBR. Part of the treatment is the frontal lobe. I am afraid of getting a lobotomy. Only have one reliable DH with teenagers and moving into a new place. My other DH needs a stay in a Psch Ward and I see it coming. Husband has 30% heart  function and depressed. I have asked for home care.

    I am pragmatic, a senior and not particularly upset. Just trying to have a life. Thanks more questions coming 

  • banjobanjo
    banjobanjo Member Posts: 187
    edited November 2011
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    Imbell, I have the rubbery legs feeling too.  I have also had chattering teeth a couple of times when I close my mouth after the WBR session - it stops if I open my mouth, weird feeling.  I am half way through a 21 daily session WBR, so don't know what other things will occur.  Haven't noticed any brain fogginess yet - I regularly do a very difficult crossword in a weekly journal and for three weeks haven't been able to do one clue and started to think I was losing it but this week I managed about half the crossword, so I think the others were just extra hard rather than my brain having a problem. Trouble is, I'm watching myself all the time for signs of brain loss...

  • Rohm
    Rohm Member Posts: 18
    edited November 2011
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    My brain met was found almost two months ago.  I had a craniotomy and am now in the middle of 10 days of radiation to the back of my brain.  So far so good!

  • chainsawz
    chainsawz Member Posts: 113
    edited November 2011
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    I didn't have WBR but SRS (cyberknife) instead.  One of my spots is in the center of my brain, and inoperable so surgery wasn't an option.  2 years later I am dealing with swelling in my brain (radiation necrosis) which has really messed with my ability to type :<

    I haven't had any driving limitations with my treatment choice. 

  • pq2
    pq2 Member Posts: 66
    edited November 2011
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    Good thread! Chainsawz is great inspriation to me! Just finished 20 WBR. My ears are slogged, most annoying, and I am so tired I can do one thing a day. But I feel pretty good, headaches are gone and I've gone two days without pain meds. Appetite is lousy but what I don't put in my mouth will never hurt me. what I do know is that it's not the death sentence I thought it was when they found the brain mets. Keep on ! 

  • TallM
    TallM Member Posts: 1,070
    edited November 2011
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    Dx 10/4/11 w/inflammatory carcinoma that went from my breast, to my bones, to my liver & my brain. I have est/pro/her 2-all positive. I've been told that gives me more options:) I just turned 37 & don't think it's sunk in yet. How long does it take? The more I hear the more I begin to realize this is a long term, life altering change. I'm a fighting person & have seen others survive but wow I'm realizing I'm going to have to dig deeper than I ever have in my life! I'm a professor of music (& have traveled all over the world performing) & work as a nurse (RN). Well that's before all this took place:o I'm single (which is a blessing & have a great support group). I can't imagine having to put kids through this. I know many do go through this w/families. Kudos to all of you!!! That would totally break my heart. Good luck all. I know I'm going to keep up the fight & hit EVERY ball that comes my way.

  • alesta29
    alesta29 Member Posts: 240
    edited November 2011
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    TallM

    Hi

    How long does it take? I'm 5 months into a stage IV diagnosis and first chemo. Have passed through the "F*** I'm going to die in the next year" panic phase and generally feel a bit more stable, largely through reading the experiences of women, men and their supporters on the forums. Still have wobbles at times and dreading scans in Dec after my chemo finishes.  

    Get support wherever and from whoever you can. Ask lots of questions. Make sure you know all the options for your treatment - be your own 'project manager'. Find a medical team who you trust and who fill you with hope. 

    And join in here.

    Welcome and nice to meet you ;-)

    Laurie x 

  • Bernicky
    Bernicky Member Posts: 66
    edited November 2011
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    Lynn had her first craniotomy with SRS in Dec, 2007 - her second craniotomy in Dec 2009 with WBRT - her third craniotomy with WBRT in Jan/Feb 2011. Her largest tumor was 4.26 CM in diameter. Being HER neutral there are no drug therapies available so it has all been surgery and radiation.

    It has been a long road but that beats it being a short road. Alesta29 (Laurie) is right - be your own advocate. Learn the terminology and if something doesn't feel, sound or look right then question, push back and demand.

  • TallM
    TallM Member Posts: 1,070
    edited November 2011
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    Wow! alesta29.! I'm sorry to hear such news. You sound like a strong person inspire of all you're going through. It's amazing how out of control are lives really can be & it's up toy the man upstairs in the end. We make plans & different plans are in store for us. I hope you are able to have a great support team & your pain is kept in control. Not gonna lie-last ngjt when I got on this site I was looking for support. It hit me & I realized a little more of what I'm (what we're all struggling w/). Thank you for your reply! I wish you all the joy, luck & hope I can from the USA! BTW-Great Britain is a fun country:). Keep your head up & I'll send good vibes:) Best wishes!:)

  • TallM
    TallM Member Posts: 1,070
    edited November 2011
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    Wow! alesta29.! I'm sorry to hear such news. You sound like a strong person inspite of all you're going through. It's amazing how out of control are lives really can be & it's up toy the man updates in the end. We make plans & different plans are in store for us. I hope Yu are able to have a great support team & your pain is kept in control. Not gonna lie-last ngjt when I got on this site I was looking for support. It hit me & i realized a little more of what I'm (what we're all struggling w/) Thank you for your reply! I wish you all the joy, luck & hope I can from the USA! BTW-Great Britain is a fun country:). Keep your head up & I'll send good vibes:) Best wishes! :)

  • 1maximus
    1maximus Member Posts: 11
    edited November 2011
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    diagnosed with stage IV from the start on  Nov 1st 2009 with mets to( bones, liver,lung,spleen.)Lungs mets gone after TAC, but liver lesions came back. Even thougth I had  mets in skull and dura I was assured it would not cross to the brain, started going to new onc who ordered brain mri, found 4 lesions, had gamma knife procedure aug 11th 2011, which was a breeze.  getting brain mri nov 7th, hope them little suckers are shrinking,and dead.  currently on xgeva and zoloda since May 2011, liver lesions are shrinking, bones stable, zoloda is one of the few chemo that does cross the blood barrier, so I wiil put up with with the hand & foot syndrome.Just celebrated my 2 year cancerversary, and feel pretty good.

  • TallM
    TallM Member Posts: 1,070
    edited November 2011
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    1maximus- I to hope for you that those stupid little suckers are being killed dead! The brain can be a bit tricky because of the BBB! I'm using Lapatinib (Tykerb) oral pill that is supposed to cross the BBB as well as spinal infusions w/methotrexate Chemo 2x's a week plus body Chemo. The results have been amazing so far (thank goodness). Cancer sucks! I can tell you've taken the positive attitude too & are fighting with a strong mind & will. Not that that's all it takes but it sure helps:) Thanks for sharing & I'll keep my fingers crossed that the MRI on the 7th shows good things for you! One day at a time we'll win:)



    Hugs-Malinda

  • imbell
    imbell Member Posts: 61
    edited November 2011
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    I am so hppy for this thread. Med info is fine but personal experiences are more helpful. Got the wobblies, got the blurry vision but no other SE's  Thanks for the heads up re post fatigue. Support is limited so I need to plan ahead

    Of course, I still have liver and lung tumors although have shrunk from chemo. How does other tx fit in?

  • TallM
    TallM Member Posts: 1,070
    edited November 2011
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    Imbell-It can get a bit tricky when your body starts adding other areas to combat. With mine they just added 2 more days a week of Chemo for my brain. So I have Chemo 3 days a week & do hydration the other 4. I'm a BIG believer in flushing out all the toxins I can. One can only drink so much water. The hydration is so nice because it gets right to where it needs-to te cells.



    I know a lady that has breast cancer & she got thyroid cancer. She had to stop her body Chemo till the thyroid was under control & is now back to Chemo. My cancer spread from my breasts to my lymph, to my bones, to my liver, to my brain. As soon as the brain part is attacked (2 more weeks of brain Chemo:) then the same treatment for the rest of the body (Taxal & Herceptin). From what I understand the body will keep a similar treatment vs brain. I'm still so new to this & may be way off. I hope my babling makes some sort of sense & can help in some way. Best of luck to you. Keep up the good fight:).



    Hugs-Malinda

  • mommyx3
    mommyx3 Member Posts: 13
    edited November 2011
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    TallM-

    I too was dx stage 4 from the start with mets in liver brain and bones.  There were 3 spots in the brain but got rid of those with radiosurgery.  I had a recurrence in the brain in July, too many tumors to count and did WBR.  I have not been able to drive since the recurrence but do have an MRI on Friday to see how things are going.  Two weeks after WBR tumors shrank by 60%. That was Sept. 2nd.  I am on xeloda and tykerb (supposed to break into blood brain barrier).  The mets in liver and bones have regressed, not gone but onc said mostly scar tissue.  When first dx onc said no need for mastectomy because cancer already spread, but with treatment as everything regressed was able to finally have one.  I was 36 when dx and just celebrated my 37th in Sept!
  • TallM
    TallM Member Posts: 1,070
    edited November 2011
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    mommyx3

    Wow! What a fighter. I too am using tykerb to cross the BBB & I'm doing  spinal infussion 2 times a week with methotrexate. Mine is located in the left side (parietal-mid head to th occipital region in the matter-thickening layer of the brain). I feel lucky that it is there & not in the lobes of my brain! I'm glad radiosx helped you! They are hopeful w/mine as I am:) 

    I too haven't been able to drive but have an AMAZING support group. It makes all the difference. Sounds like your still working to get rid of the body cancer. I just finished my 1st 3 week cycle of body chemo with Taxol & Herceptin & the onc has been amazed @ how fast the tumor (6cm in rt & 2cm in lt) has gone down! A great sign:) 

    I'm doing Chemo 1st because its so agressive then I'm going to do a double mast, rad & whatever after that. Sounds similar to what you did.

    You are so young like me. I knew something was wrong/off & just turned 37 myself. It sounds like you have a cute family & are fighting for them too. I wish you the best & hope that your MRI shows those things are going well & those nasty little suckers have left you!

    -Malinda 

  • TallM
    TallM Member Posts: 1,070
    edited November 2011
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    BTW-I agree with you about the age for breast cancer testing. The comercial that says when you're 40 go with your book club friends etc! What about us that aren't even 40! I think there should be a basline set @ 35! My mom had breast cancer too w/a mast but hers was not the same as mine. I guess it would be easy to complain but it just doesn't make logical sense to wait so long. Anyway enough of that:)

    I hope you have a great day. It's chilly here but I'm toasty warm:)

  • MCTHO
    MCTHO Member Posts: 44
    edited November 2011
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    Doctors discovered my brain mets in February, had WBR in March.  I'm currently using Tykerb and Xeloda.  Feeling pretty good.

  • alesta29
    alesta29 Member Posts: 240
    edited November 2011
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    Here in the UK, unless you have a family history or go private, you don't get called for testing until you're 50 although they are trialling a lowering of the age to 47 in some areas of the country. (whoopie effing doo...)

    Laurie x 

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

    That's terrible - it's twenty years since we lived in England but both my daughters (25 and 22) are living there and of course, since my diagnosis, they are now at double risk because of the genetic link.  I have advised both of them to pay for a regular (how regular?) thorough check (but what's thorough?  Mammograms let me down completely...) - maybe ultrasound scan of the breasts?  Don't know what they'll do about it but I feel it would be a good financial investment into their future. Problem is when you're young, you just don't feel the danger, do you?  I do think the NHS is sorely lacking in preventative common sense.

    Hope they are doing a good job looking after you, though,

    Barbara 

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



    I have a sister who is a bit freaked out since I was Dx. I agree about the mamo. They didn't even see all of mine. So they did an ultra sound & BAM! I asked the Dr what he'd do & he said a lot insurance WON'T pay for an ultra sound but WILL pay for a diagnostic mamo. Apartment there's a difference. Maybe that will help you're young daughters. I so would NOT follow the 40 year old reccommedation! PURE RUBISH. I'm not even 40 & I'm not alone. I think 35 should be a baseline. If insurance won't cover it than I guess it's up to us to 1)change the messed up thinking or 2)happy birthday to us each year. It's the piece of mind that is priceless. Life short enough as it is. No need for it to be made shorter!



    Good luck w/everything

  • imbell
    imbell Member Posts: 61
    edited November 2011
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    Well I have done 7, No SE's yet but I feel like I have had a lobotomy, On the other hand the steroids make me a wee bit mean at times. My fault. Spent so many years treating my DDs like children they act 12 instead of 40  Didn;t teach them coping skills. Now they finally talk directly to their father rather me act as go-between. It is a good thing.

  • 1maximus
    1maximus Member Posts: 11
    edited November 2011
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    Thanks TallM for keeping your fingers crossed for me, it worked, just got the results from brain MRI after gamma knife 3 months ago and good news! the treated brain lesions are shrinking and there is no new little suckers, Happy dance time!

  • K-Lo
    K-Lo Member Posts: 826
    edited November 2011
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    I agree that it's hard to know what is making you feel what with multiple med's and treatments, Mary. (I'm popping in to root for you all.)

  • pbandj
    pbandj Member Posts: 6
    edited November 2011
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    I guess Iam on this list

  • pbandj
    pbandj Member Posts: 6
    edited November 2011
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    yeah

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



    WOOT! WOOT! Great news! I hope I can have the same good new when my MRI comes up. So happy for you. I'm doing a happy dance for you:).



    You ladies are all amazing. We're making it a day at a time:) How do you eat an elephant? Bite by bite:)



    Happy day all.