Effects of brain mets at 'later stage'?

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Dee2810
Dee2810 Member Posts: 97

 'Later stage' LOL!!Smile what to call it!? Onc today answered my question ' is it gonna be the brain mets that will  eventually do me in?' with a definitive 'yes'. Not yet  planning to go but have basically been told to 'open parachute to hospice' again!! Yikes! He said I may end up in a wheelchair or bed bound. Does anyone have experience of anyone dying as a result of mets to brain/ CNS?? My friend's mum went a bit funny and said some awful things to her although she thinks it may have been linked to the medication rather than the mets. All feels very surreal!

 Thanks girlies

 Dee (0: 

Comments

  • celtic
    celtic Member Posts: 59
    edited January 2010

    Dee, I am sorry that you are facing this, I don't usually post but my aunt passed away from Brain Mets last summer. She was unable to walk due to not being stable and losing her balance, wheel chair did it for awhile then she was bed bound the last week of her life. She was at home with a hospice nurse, only getting medication as needed and was very alert up until a few days before she passed away. So no , she did not say awful things to her family or nurse, and she was comfortable and peaceful and very alert.

    BUT Take a deep breath and look at all your options, talk with your doctor about all trials.

    Hugs and prayers for you, you are not in this alone.

  • ElaineD
    ElaineD Member Posts: 2,265
    edited January 2010

    Oh, Dee, am so sorry to hear all of this.

    My only experience of brain mets was with a friend. In the early months she was as well as could be expected (don't you just love that phrase). Anyhow as time progressed, she became aware that she was "changing" and asked that the younger family members should not visit any more-she was still sufficiently in control/aware to worry that she would frighten them. She was such a great girl, and all her young neices and nephews loved her dearly-she was changing-becoming very forgetful, slightly aggressive, and didn't want them to cope with this as it got worse. This was very much towards the last few weeks of her life. Her actual cause of death was a massive stroke-so in many ways, her worst fears never actually came about.The younger family members had their memories of the aunt they knew and loved-and her death, wasn't strictly speaking, from cancer.

  • msledford
    msledford Member Posts: 6
    edited January 2010

    Dee, I really don't know about mets. But my dear husband , died from  a brain tumor. All I can really tell you, is that it depends on where it is on the brain, is how you will react. If you want , you can pm, me. I was on a wonderful forum for brain cancer.

    I will say prayers for you.

    patsy

  • Dee2810
    Dee2810 Member Posts: 97
    edited January 2010

    Hi all! Yeah real bummer when you think of how your independence may be compromised and I'm living with a teen girlie who has been ruined... te he...Smile i.e. I,ve literally done everything here in the house!! She will be fine in that respect though as she can cook etc and will get lots of friendly support... They will just have to clear up after her! My balance is already an issue but you just decide to live for now eh!? You did make me laugh Elaine with your 'as well as could be expected' ... so true. Am hoping that when the time comes it too will only be a short spell when am at my worst.... as we all do I'm sure! I love your avatar Christine! 

    Thanks again girlies

    Dee(0: xx

  • kat299
    kat299 Member Posts: 5
    edited January 2010

    Hi Dee,

    My Mum's experience was she was very unsteady on her legs but generally coped with this with a stick and going down the stairs on her bottom, in my niece's words Nana was copying her!!  My parents were talking about a wheelchair to help her getting around and hiring or buying a stair lift (the District or Mcmillian nurse gave Dad the details for where to hire the stair lift from and the wheelchair was going to be on prescription).  

    I think she found her  words getting jumbled up extremely frustrating and as it progressed she found herself unable to use her mobile phone, TV remote and microwave.  As Patsy said it depends on where abouts it is for what your symptoms may be.  My Mum's personality never changed with the brain Mets.

    She was not bed-bound but for the final week of her life and the district nurse, GP, Mcmillian Nurse we all in everyday for the last week,   she was comfortable and not in any pain.

    Hope it's a long time before you need this information and those pesky mets behave and shrink!!!

    Hugs

    Kath

  • Dee2810
    Dee2810 Member Posts: 97
    edited January 2010

     God Kath you don't know how 'relieved' I am to read your words, (though sad for you re your mum), especially the personality bit! I do think that it's more likely to be movements and jumbled words with me! my onc has said that I am incredibly healthy considering all that's going on with me! I think I am built like an ox and may well loose my marbles and everything else and yet still my body won't give in!Laughing .

    I keep on affirming to myself that those 'pesky mets' are melting in a sea of taxol! ha ha ha!!

     Big hugs! It's the weekend Yippee!!

    Dee (0: xx 

  • steeny107
    steeny107 Member Posts: 85
    edited January 2010

    Dee

    I read most of your posts but normally keep quite on here, but just wanted to say all the best, your a tough cookie.

    I was just dx with brain mets in Dec 2009, did Cyberknife for the 2 lesions January 2010. I am on 2000mg of Xeloda per day.  Get a  break for 2 weeks as I just finished Rads to the breast and aux.  Then he is upping me to 3000mg.

    I am the same my body feels fine, I dont have any SE from the mets thankfully and hope I never experience them.  Hats off to you for dealing with these pesky mets, drown them in taxol

    xo Michelle

  • Dee2810
    Dee2810 Member Posts: 97
    edited January 2010

     Thank yooo Michelle! Good luck with the Xeloda too! I think it seems to be a great drug when it works! Us cookies are in this together eh!! 

    Night Night from across the big pond! Zzzz...

     Dee (0: xx

  • steeny107
    steeny107 Member Posts: 85
    edited January 2010

    Goodnight Dee oh and yeah I am a fellow Brit, I from Scotland, been here in the states for 11 years this month, I miss it like crazy right now.

    Night Night sleep tight xo

  • Dee2810
    Dee2810 Member Posts: 97
    edited January 2010

     Aw..I bet you are missing it. Spent alot of time there years ago! Teen girlies Dad is a scotsman. Now with a Yorkshire man!! Northerners... Lovely

    Dee (0: xx 

  • Member_of_the_Club
    Member_of_the_Club Member Posts: 3,646
    edited January 2010

    My mother died from brain cancer, and one thing I can tell you is that she was never in any pain.  It does depend on which areas of the brain are affected.  My mother could speak until the last few days but lost the ability to stand and walk before that.  I think the loss of function is the most frustrating. but the lack of pain the most positive.  Even after my mother was unable to talk, I asked her if she was in pain, and she shook her head no, and then I asked if she was comfortable and she nodded yes.  A visiting nurse told me that people with brain tumors die with less discomfort, they just fade away.

  • steeny107
    steeny107 Member Posts: 85
    edited January 2010

    Yep Northerners lol, good crowd.

    xo 

  • naturallyredd
    naturallyredd Member Posts: 3
    edited February 2010

    could you tell me how the cyberknife worked for you?  did it hurt?  any major side effects? 

  • wallflower
    wallflower Member Posts: 36
    edited February 2010
    Thanks to Dee for asking the question and to all who replied. Was diagnosed with brain mets last week, speech and balance already badly affected. Having radiotherapy at moment and was hoping to reverse worst of the symptoms, was I expecting too much? Dee and the rest of the club I love your attitude, Lets make the most of what we have, I'm feeling happy in spite of whats ahead. Could that be a sign of brain mets too? Laughing Good luck girls .
  • candy14510
    candy14510 Member Posts: 165
    edited February 2010

    Ladies I know that you know Steeny107 or Michelle McAllister....She was on a thread..."Starting Chemo in June"....We were going thru this together as she was with your too.  She is such a strong woman....I noticed she also posted on this thread and wanted to share with you, her Facebook post as of today Feb 24th.....I know she is looking at her FB page everyday....I became friends thru facebook and you can look her up...I'm sure her  husband will "freind" you......Please keep her in your thoughts and prayers.  God Bless you Michelle!!!! - Polly

    Michelle McAllister Dear Everyone, Thank you for helping me to the end. I am doing Hospice and will hopeully be in the Keys at the weekend for the final parties days. Come visist face to face xo3
  • TriciaK
    TriciaK Member Posts: 362
    edited March 2010

    Hi Dee,

     I met a dear and close friend through the her2 support site, she was stage iv with bone /brain mets and I was early stage.   I live in Ireland and she in Scotland at that time, but as her hubby was irish I helped her move here as she wanted her children/hubby to be close to his family when she passed.

    She was an amazing woman,  and also a smoker that  never managed to quite give up through her dx.  In the last two weeks when she called me she had difficulty hearing me, also had trouble texting as her thumbs were affected by neuropathy. She took her xeloda at lunchtime as usual on her last day on earth, smoked a ciggie out in the garden and said she was going for a lie down.  She did'nt awake.   It broke all our hearts to lose her, but as a fellow cancer survivor I think she had a beautiful death if such a thing is possible.   She left two young children but left them letter's to read and was very much ready, a strong brave lady who I wished I had known better but time did'nt allow.

    My Father had a horrible death from cancer (in my mind) and I thought this so beautiful and wanted to share with you.  Carol also had a beautiful funeral and was buried over looking a lake near her home and under a tree which her hubby was glad he found:)

    My very best wishes to you, and hope this gives you hope as it did me . xx

    Tricia xx 

  • pee
    pee Member Posts: 456
    edited March 2010

    I fear getting mets to the brain.  My mom got them from her lung cancer and the change in her personality and bizarre behavior was frightening to me.  I want to die being me and not someone that the disease has created (I hope that made sense).  I know it is all out of my hands and I must accept that whatever will be will be.  And I think I do accept it.  It just doesn't hurt to "wish" for leaving this world as you would like to.  

  • cb3228
    cb3228 Member Posts: 10
    edited November 2010

    I'm reading these and my heart goes out to all.  My 34 year old daughter was diagnosed with stage IIa last August 2009 and then the brain mets showed up April 2010........WBR in May 2010........issues with sleeping, not eating and balance and cognition in August so a craniotomy for the largest tumor.  October 2010 tumors found on the liver and lungs......chemo started with Abraxane and another drug and she finished the first 3 treatments before starting to have neuro issues again.  Another MRI this past Wednesday to find that not only are the tumors back to almost the original size and some bigger.........but there are now several small ones in her cerebellum.  They stopped the chemo and will be doing the cyber knife surgery next week on the largest ones.  I spoke to her doctor 's office yesterday and the covering doc stated that her doctor told her before she left for vacation for her brother's wedding that she hoped that Sandi would still be with us when she returned on November 30th.  They are not sure that the SRS will work, I'm assuming due to their size and they are normally used on tumors smaller than 3cm and out of the at least 7 tumors she now has, the 3 largest are over that......even the one that was "removed" is back to 5x3cm now in only 2 months.

    Right now she is sleeping more and more each day........she is having trouble drinking much and her balance and spatial awareness are very poor.  We were just able to get a motorized wheelchair/scooter which is controlled by the person pushing because my other daughter works at one of the companies and they were nice enough to let Sandi use one specially made for her for as "long as she needs it"......free!  She is still there mentally and is only showing some short temper spurts here and there.

    Not only am I obviously concerned about Sandi........but she has a 5 year old little girl and I also am concerned about my husband.  Sandi is technically my stepdaughter (I hate the "step" word!).  Her mom, my husband's first wife, died from breast cancer after a 5 year battle at the age of 35.  Way too much deja vue and he's feeling really beat up from this dreaded disease as he watches his daughter now fight the same disease that his wife succumbed to.  How do you balance the hope with the reality?  The doctor tells me that Sandi may not see Christmas yet they are doing the SRS.  This is just not what we thought even last year when she was diagnosed............we thought at the very least we had time since it was caught early!  

    We will be talking with her about her final wishes this Sunday after her daughter's birthday party and will try to get her to agree to a home health aide/visiting nurse to help.  It's just so sad to be putting those two things together........I'm just at a loss as to what to do to help her.

     My love and prayers to all of the ladies here for as much quality time as possible and for a calm and peaceful passing.......Hugs to all of you!

  • vanderlady
    vanderlady Member Posts: 154
    edited November 2010

    cb - Oh, how horrible.... thanks for sharing, venting.  I can't even imagine.... I'm bawling my eyes out right now.  Give her lots of love.  BIG HUG to you.  This disease sucks and when are they going to find out what is causing it!!!!

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