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Brain Mets Sisters

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Comments

  • buburuzaa
    buburuzaa Member Posts: 17
    edited November 2012

    I am posting for a very good friend....she has been on Herceptin since Jan after having been on it for 1 year and ahalf years ago. She has been having eye problems, like getting very dizzy when looking in a different direction...can this be a SE from Herceptin. She has been to an eye DR and everything is ok. She has a PET scan in 2 weeks. Any ideas? Thanks!

  • dearjilly
    dearjilly Member Posts: 73
    edited November 2012

    Hi everyone,

    I wanted to share my good news that I got today. After my brain MRI yesterday, it showed tumour shrinkage with no progression. Thought I'd let you know, as some good news brings hope.

    Much love and thanks for your support, always.

    Jill

  • nmiller1978
    nmiller1978 Member Posts: 30
    edited November 2012

    Hey guys,

    Spent the last 5 days reading this entire thread and feel really effing inspired. You ladies are incredible. An update on me: my original tumor was 3.9 cm, yes CM, but mostly cystic and fluid filled. I know it's not polite to compare BUT- looks like I win biggest tumor!!! Holy crap. Hard to believe I had so few symptoms. Post craniotomy, smaller but still pretty big. RO says I just barely qualify for SRS. MRI for planning is this Monday and SRS, barring any MRI surprises which I am bracing for, is scheduled for Friday, 11/16. Looking forward to getting it done but slightly freaked about getting zapped. One slight issue... Not in love with my RO. After talking to my original RO who did my chest rads and after reading up on all of you, I was under the impression that Srs could be done multiple times. She said she's willing to do it once & then at first sign of progression it's off to wbr.. Huh? Seems like a totally arbitrary call to me, maybe just the way she does things. In any event, she was not overly encouraging but hey I like running at the back of the pack. Gives me something to aim for vs. constantly looking over my shoulder, know what I mean? I openly admit that I am a giant pain in the ass but it has served me well thus far and I'm not about to change up my game plan now! Anyway, thanks for listening!

    Oh and k-lo, whats linear accelerator?



    Hugs & prayers,

    Nicole

  • jodimomoffour
    jodimomoffour Member Posts: 258
    edited November 2012

    I am alive, feeling groovy and skipping a cyclr of taxo, fajitas and herceptin.  Our eldest son and grandest will be here for Turkey Day and I am looking forward to Build A Bear and lunches every day with her.   I don't want to be wiped out by chemo.  Ask K Lo.  I am the queen of denial!  Hope everyone is groovy.  xoxoxo

  • embmom
    embmom Member Posts: 10
    edited November 2012

    To NMiller--

    I also had a large tumor 3.75 --just a single one on the left parietal area.  I had a cranitomy and it was removed in June.  I didn't know I had it till a seizure took me down at the end of May.  It was 10 days before my son's wedding.  The recovery from the surgery was not bad--went back to work about a week later.  I own my own business so I can call my own hours.  I did the SRT --I think it was the linear accelerator type they used... I did 3 treatments.  He was concerned about doing just 1 and I didn't want to do the WBR.  You might ask about doing more than 1 srt, rather than just going to the WBR.  I have been clear so far--next MRI in a month.  The side effects hit me the day after the last treatment.  Alot of nausea, extreme fatique and intestinal upset.  It takes alot to get me down, but the fatigue was really bad. Hope all goes well with your treatment! 

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

    Jilly, hey, overall better news indeed.

    HELLO Jodi!   missed ya, my queen.

    You know, "Linear Accelerator" or "LinAc" is what my RO called the treatment she gave to my lil brain after the frame wouldn't fit my big skull for gamma on one side.   I got the impression its what they use for external beam a lot, but you don't hear the term...?

    Don't know anything about repeated SRS vs WBR, but I do hear of happy people getting second opinions!

  • Tillycat
    Tillycat Member Posts: 57
    edited November 2012

    The largest tumour they found was in my cerebellum - it was just over 3.5cm.

    I had gamma knife on it (along with a few others) about 9 months later it was showing signs of growing again. The consultant wanted to do a craniotomy but my liver function wasn't good enough for a General anaesthetic so I had more GM.  He said that I was getting very close to the maximum dose he was willing to give in any one area but went ahead anyway.  That tumour is now shrinking like the others.  Fingers crossed it continues to do so.  

    If you had a craniotomy first I would imagine the overall radiation dose from GK would be lower as the remaining tumour would be smaller.  Not sure I understand why you couldn't have a second dose if need be.  I think I'd be tempted to ask for a second opinion

    Tillyx

  • Fitztwins
    Fitztwins Member Posts: 144
    edited November 2012

    Has anyone heard from Lisa (Chainsawz)?

  • Frapp
    Frapp Member Posts: 343
    edited November 2012

    I've been thinking about her a lot lately. She use to be here all the time, I miss her.

  • bestfriend05
    bestfriend05 Member Posts: 70
    edited November 2012

    Hello all,

    My mum has brain mets since last year..has had initial surgery to remove brain tumour, after which she had WBR as preventative, followed by gamma knife for new brain mets in August this year.

    Unfortunately she has had 10 new brain mets crop up again due to uncontrolled disease in the body. Her radiation oncologist is very keen on 2nd round of WBR which will be low dose for 2 weeks. He says this is 70-80% effective. I am very very skeptical about this. We are in Vancouver, Canada and have found out the hard way that things are pretty far behind in terms of treatment protocols as compared to the US. She is HER2 negative. She also is being given chemo for treating metastases in liver and lungs..

    Can you guys please give your opinion...any suggestion would be appreciated..

    Love to all

  • LuvRVing
    LuvRVing Member Posts: 2,409
    edited November 2012

    I'm new to the world of brain mets so I don't have much advice to offer.  But I want to wish your mom all the best.  I hope that treatment works and the brain mets are blasted into oblivion.  Many hugs to you and your mom.

  • Surly
    Surly Member Posts: 73
    edited November 2012

    Bestfriend05, I'm also new to brain mets, but what you describe sounds like the route I would expect. I think WBR is how one would treat that many brain mets. I don't think gamma knife could take care of that many--at least probably not in fewer than two or three treatments. With 10 brain mets, I think the radio-surgeon would have to adjust and reattach the titanium frame to the skull more than once in order to get at and center each met--unless they were all grouped together in a couple areas. That is my limited understanding, anyway. ...Are you thinking that there should be a different treatment or surgery?

    I wish I could offer some suggestions. Can you get a second opinion? I hope the treatment is successful for her. Good luck.

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

    "Uncontrolled disease in the body".   This is what my neurosurgeon spoke of.  He said, "once your chemo gets control of the source, this will stop happening (brain mets)"

    He was right.

    So focusing on the medical oncology is worth the time and energy...

  • holdontohope
    holdontohope Member Posts: 44
    edited November 2012

    Hello ladies!  I am new to this topic.  Just this morning I had a brain MRI which showed 5 or 6 active tumors in many different areas.  They are mm sizes, with some quite small.  But there is fluid on the brain too, whcih is caused funkie symstome, like note being able to wriat or type well  ( I usuannnly edit, but wanted oyo to see what it is likn.)  I also have pretty bad balance issues.  I was told I will most likely get WRB.  The tumors are too spread out for the the gamma stuff.   My onc is also checking with a neurosurgeon.  We will see what he says.  The bone and liver mets I was dealing with are doing great, pretty close to remission.  So I was put on tamoxifin about three weeks ago.   But then these symptoms and brain mets.   I feel like I fought the good fight with chemo treatments.  And just two weeks later, out of the blue, I get whacked again!

    This is a lot for me to process.  Of course I came straight to this board to hear all of your thoughts and experiences.

    One question already.  K-lo, I don't understand what your neurosurgeon was saying.  My cancer is under control.  So why do I now have tumors in the brain?

  • alesta29
    alesta29 Member Posts: 240
    edited November 2012

    Hey Hope

    I was in your place in July with a few small scattered mets (but no fluid) Still had progression in liver so was taken off Xeloda (which does have some success in crossing into the brain( and then started Eribulin - long story aand a whole other thread...

    I had 5x WBR in July and will probably have a scan in January although so far, no return of any physical symptoms. Good luck!

    Lx

  • LuvRVing
    LuvRVing Member Posts: 2,409
    edited November 2012

    Alexa - you give me hope, so thank you.

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

    HoldontoHope, please let me take my foot out of my mouth.   I was restating what bestfriend said, (out of context) and relating that phrase to what my NS said about my mets.   The nodules in my chest were getting bigger,  I'd found eye and brain mets.  My MO switched me to Halaven, but there was an urgency to treat brain, thus a pause in the halaven..   The  MRI (post#1 gamma) showed new mets.      He said he would gamma again, but that when the chemo took control over my primary mets,    the new brain  mets would stop popping up.   That seemed to happen.

    Why I thought I could apply that to everyone, I dont know.   But I guess you could inquire as whether that could be true in any way for you....

    Humbly, Kathy

  • holdontohope
    holdontohope Member Posts: 44
    edited November 2012

    Alexa, thanks for your encouraging words.  I am not seeing past 3-4 months now, but so nice to know that may not be the case.

    Kathy, no offense taken. Smile  I was just trying to figure it out.  I started WBR today, so feeling happy that they are moving so quickly.  I have great confidence in my RO; We even graduated from our university in the same year .  We just had a class reunion two years again.   Anyway just some trivia, not the reason I trust him so much.  When he looked at MRI scans, he saw 10-12 smaller scattered lesions.  Felt I was not a good candidate for gamma treatment.  

    Onward and upward!

    Sharon

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

    Hey Sharron, We have some things that turn out the same and then just when you think it is the same situation, the doctors do exactly the opposite.   Talk about lack of control.

  • justjudie
    justjudie Member Posts: 196
    edited November 2012

    Hi Ladies,



    Does anyone know how Eireanna is doing? I was PMing with her but havent heard from her for awhile now. Thanks for any info.

  • nmiller1978
    nmiller1978 Member Posts: 30
    edited November 2012

    Hi ladies,

    I'm hoping I will someday be able to contribute instead of constantly asking advice but this is all just so new. To update: planning MRI was Monday, Srs scheduled for Friday. The ROs nurse called today with results. I was concerned about new lesions and luckily there is still just the one which is AWESOME BUT, the cyst is already reaccumulating fluid. Not enough for RO to reschedule but enough that it's measure able on MRI. Anybody have this happen? I was told there was a chance that this would happen but that it was unlikely. I'm starting to dread that word. I'm guessing I'm looking at an Ommaya right? Any input would be appreciated. You guys have already been so helpful.
    Love & prayers,
    Nicole

    Dx 3/28/2010, IDC, 4cm, Stage IV, Grade 3, 0/24 nodes, mets, ER-/PR-, HER2-
  • bhd1
    bhd1 Member Posts: 173
    edited November 2012

    Yay for u. Thanks for the post

  • pinker
    pinker Member Posts: 2
    edited November 2012

    I had emergency surgery for brain mets and had two removed. I had the cyberknife twice last month. Four on top andtwo have already begun to shrunk. And then i had the surgery site zapped .. there was one tiny one left. I have another MRI in December to see how things are going. The cyberknife was awesome. The second time I went to work right after. I felt great during and after. I'm not sure if you're talking about gamma or cyberknife. I was told if they come back I can get them zapped again. WBR should be kept as a last resort. Get a second opinion please. Good luck! Any questions, please message me!

  • apple
    apple Member Posts: 1,466
    edited November 2012

    going back in for some more WBR....  My tumor is not in an accessible place but WBR worked fine the first time.and the little mets.

  • tracy108
    tracy108 Member Posts: 45
    edited November 2012

    hi ladies...

         went to get my dose of herceptin today and results blah blah...all lumps n bumps maintian and unmoved apart from the one in my brain ..so doc has taken me off of H and put me lapatinib????? has anyone on here had this drug and how did it make you feel???

    hope this post finds you all well and smiley..

    tracy..xx

  • Sido
    Sido Member Posts: 55
    edited November 2012

    Hello,

    I was just diagnosed with brain mets (17 of them) last Sunday after a grand mal seizure and am on wbr for 14 treatments. I've had 4 so far. I'm still reeling, but my head feels like there are tiny burning pins inside (which I'm hoping is killing the lesions) and it is really uncomfortable. I'm on Keppra and Decadron which each make me feel stoned (which I don't like), so I hesitate to break out any of my codeine or oxycntin, and ibruprophen is limited (and tyelonal worthless). Is there anything anyone can suggest?

    Acacia

  • alesta29
    alesta29 Member Posts: 240
    edited November 2012

    Update on Melissa (Tillycat).



    Not doing so well liver-wise and told that her liver was struggling with chemo and all onc could suggest was a very low dose of Halaven or keep her on Megace (anti hormonal).



    She was recommended a clinic in Germany where they take blood samples and make up some king of vaccine. She is there at the moment and gets the vaccine next week.



    Fingers crossed...

  • justjudie
    justjudie Member Posts: 196
    edited November 2012

    I didnt realize Melissa was not doing ok. I am so sorry to hear this and she is in my thoughts and prayers. I hope this vaccine will help her. Thank you for letting us know, Alesta, and please do keep us posted. Sending Melissa many gentle hugs...

  • Frapp
    Frapp Member Posts: 343
    edited November 2012

    Keeping tillycat close in my thoughts.

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

    Germany?  Hoping for good results.   (((( Melissa.)))))))

    Re pain meds, Acacia, would it feel safer to take very small doses of whatever your favorite pain pill is, and increase as tolerated?     I guess they order codeine for neuro conditions.   Some people don't tolerate it well, but as I said, you could try partial doses.    I bite off pieces of lortab according to how I feel and what I'm planning on doing (e.g., driving car)

    best

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