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Brain Mets Sisters

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Comments

  • lassman
    lassman Member Posts: 49
    edited January 2012

    Bestfriend,

    I had same thing after WBR. Dizzy/swirling head. How I hated it. lasted about 3 months for me on and off but did go away eventually. Hang on in there. Pq2 is right, the steroids may be a contributary factor.

    Hugs

    Lassman

  • lassman
    lassman Member Posts: 49
    edited January 2012

    Hi all,

    Me again with an update!

    Saw consultant last night for a second opinion on doing gamma knife surgury for my brain mets. (my current onc had refused to let me have it because I had more then 3 mets). Consultant agreed with me that it is worth doing in my case because there are no mets in my body and I am still pretty healthy at present. So my 5 lesions are going to get zapped on Monday! yeah! Was so worried that they would refuse to do it. Wish me luck.

    Lassman 

  • MCTHO
    MCTHO Member Posts: 44
    edited January 2012

    Lassman - We are all rooting for you!  Please keep us posted.

  • jintski
    jintski Member Posts: 23
    edited January 2012

    Wow Lassman, that is great news! It certainly is worth doing.

    I wish you lots and lots of luck for Monday and may you remain pretty healthy and met free for a very long time!

    x 

  • bestfriend05
    bestfriend05 Member Posts: 70
    edited January 2012

    Lassm man I am so so happy for u that u r getting a treatment that's right for u and not being dictated by protocols..! Wishing u the very best of result from the treatment and hope u r fit and healthy very soon...

    Also tank u pq2 n lassman for your inputs on the dizziness...

  • alesta29
    alesta29 Member Posts: 240
    edited January 2012

    Great news Lassman. Just goes to show it's always worth pushing...

  • banjobanjo
    banjobanjo Member Posts: 187
    edited February 2012

    Excellent news - good luck with it!

  • K-Lo
    K-Lo Member Posts: 826
    edited February 2012

    WoooooHoooo, Lassman!   Victory!!!!I go in for last brain zap by linear accelerator.   Then they want to do back, then eye.   Im fine with brain and eye but the back scare me.  I fear disability !!!   Talk me off ledge?

    Thanks

  • jintski
    jintski Member Posts: 23
    edited February 2012

    K Lo

    I think brain and eye rads is far more scary than backs! I have a friend who had severe back pain to the point that she was constantly taking painkillers,  She had a one-off blast of rads to her back, the results weren't immediate and she was disappointed at first, but after about a month all the pain had gone, she walks normally again now! 

    Good Luck with the rest of your 'zapping' xx 

  • julie26
    julie26 Member Posts: 6
    edited February 2012

    I just had my first MRI since finishing WBR in October.  I was hoping that the 3 tumors would be gone completely.  They have all shrunk about 50%.  Onc. said it's not the best news but could have been worse since they did not grow and there are no new tumors.  He also said that it could actually be dead tissue that is showing up but they have no way of knowing for sure unless they stick a needle in them and he said he does not want to do that as they are too small.  He did mention maybe doing Radiotherapy but wants to wait for the results of my chest CT Scan (I also have lung, lymph node and chest mets).  I do not want to do anything more on the brain but I will wait to see what he has to say.  I was scared to tell him that sometimes I feel pressure in my head (no headaches).  He said that's probably just from the rad. and that it takes 4-6 months after treatment to go away. I'm only 3 months out.  I was wondering what kind of results others had with WBR as far as the tumors shrinking or disappearing.  Thanks.

  • lassman
    lassman Member Posts: 49
    edited February 2012

    Julie26,

    I had WBR for 7 brain mets. First scan after 3 months showed 3 remaining but shrunk. 2nd scan after another 3 months showed that there was only a 3mm spot left, which was good. 3rd scan after another 3 months showed progression, 5 of the buggers had started to grow again so now going to do gamma knife. Least it bought me six months with no progression I suppose.

    Lassman

  • pq2
    pq2 Member Posts: 66
    edited February 2012

    Go Lassman -- this sounds like a very good move. 

  • banjobanjo
    banjobanjo Member Posts: 187
    edited February 2012

    Just had scan and out of 20 mets, only a speck of the biggest is left.  My husband and I had got ourselves into such an anxious state that we couldn't take in the good news.  The doctor was his usual cautious self, however, and reminded us they could be back in six months, if not then, then at some time in the future.  He was, however, very pleased at the results.  It also showed up that my ear problem is an infection of the petrus, ie. an inner ear infection needing antibiotics, nothing to do with the mets.  This is a good day!

  • K-Lo
    K-Lo Member Posts: 826
    edited February 2012

    im encouraged by your news, Lassman, Banj, and julie.  Thx

  • alesta29
    alesta29 Member Posts: 240
    edited February 2012

    Yaaaaay Barbara!!

    Gentle skips around the table so we don't wind the dog up!

    Laurie x 

  • MCTHO
    MCTHO Member Posts: 44
    edited February 2012
    • Julie26 - I'm glad the tumors are shrinking instead of growing!  Hang in there!  
    • Banjo - Glad to hear your good news.  Now go celebrate!
  • lassman
    lassman Member Posts: 49
    edited February 2012

    Congratulations Banjo,

    Hope they stay away for a long time.

    Lassman

  • pq2
    pq2 Member Posts: 66
    edited February 2012

    Such great news Banjo. And I totally get the hard time taking in the good news. You get so much bad stuff and it's hard to get your head wrapped around the good stuff. That's what this d*** disease does to us -- but trust me, you'll feast on it! 

  • amlg1
    amlg1 Member Posts: 77
    edited February 2012

    Lassman...Banjo....Pulling for you..promising news.

  • lassman
    lassman Member Posts: 49
    edited February 2012

    Hi all,

    Update - had Gamma knife procedure yesterday at the Cromwell hospital in London for my brain mets. Wow, what a long day. The frame fitting was the worse - hurt like son of a bitch!! I was in the gamma knife machine for 3 long hours! Longest three of my life but I hope, worth it. Now just a case of letting it all settle down and MRI scan in a couple of months to see what effect it has all had.

    Lassman

  • bestfriend05
    bestfriend05 Member Posts: 70
    edited February 2012

    Well done lassman for your persistence and praying for the best of results for u..big hugs and much love xx

  • MCTHO
    MCTHO Member Posts: 44
    edited February 2012

    Lassman - Keeping you in my thoughts.  Thanks for the update.

  • K-Lo
    K-Lo Member Posts: 826
    edited February 2012

    Go gamma! Congrats!

  • pq2
    pq2 Member Posts: 66
    edited February 2012

    Go gamma, Go Lassman, go gamma, Go Lassman. 

  • mommydoxie
    mommydoxie Member Posts: 11
    edited February 2012

    Jintski--

    My naturopath has me on 20mg of Melatonin, 1 per night.  It works great for me staying asleep.  I don't usually have trouble getting to sleep, but consistent Melatonin has made all the difference for me.

  • Tiger_Blood
    Tiger_Blood Member Posts: 83
    edited February 2012

    Had my first treatment and I hate it! I feel like a science experiment. During the treatment I saw lights, faces, and smelled bleach! Ugh! The tech said that was normal as the beams get close to the optic nerve. But seeing people, it was like a news reel. I saw my hubby and my dad mostly. The rain is wacky. Any advice from anyone on how to curb the effects is appreciated! Drink water etc....you know the little stuff!

  • K-Lo
    K-Lo Member Posts: 826
    edited February 2012

    Tiger I didn't have wbr, but my back is treated thru abdomen and it doesn't feel great. Before tx i take meds- zofran for nausea and lortab for.pain- and wonder if.your doc would approve some ativan for you. Ativan seems to interfere with too much brain creativity. It keeps my nightmares away at night. I guess thats way bigger than drinking water but i love the benefits of pharmaceuticals.

  • MCTHO
    MCTHO Member Posts: 44
    edited February 2012

    What help me to deal with my 14 WBR was knowing  that each treatment last only a few minutes.  I did smell something like bleach but each treatment was easier with time.  That was a year ago and my brain is still clean.  Wishing you the best.

  • bestfriend05
    bestfriend05 Member Posts: 70
    edited February 2012

    did anyone get affected in the eyes after WBR, flashes all of a sudden that last only for a second or two..help please..xx

  • Tiger_Blood
    Tiger_Blood Member Posts: 83
    edited February 2012

    K-Lo; I took an ativan today and it really helped. That and my BFF took me to get my nails done and lunch. It has helped with the anxiety!

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