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Brain Mets Sisters

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Comments

  • jodimomoffour
    jodimomoffour Member Posts: 258
    edited April 2012

    Is the 'gamma knife' for brain mats too?  

     Alexandra, your history is almost identical to mine as far as your timeline.  I am here to tell you it does get better.  They told me it would take a few months to see results and feel normal.  They were right.  I feel like I have turned a corner for the better.  I agree that a positive attitude helps.  I have always thought so, even before the crummy disease.  Hugs. 

  • alexandra1
    alexandra1 Member Posts: 2
    edited April 2012

    pjb my wife was on decedron with bad side affects. During my research as I spend a couple of hours everyday I found that the decedron is given one standard dose for all. which means if you are 250 pounds or like my wife who was 120 pounds you get the same dose. I would take k-los advice about going to see the neuro surgeon about that. We had to change up all her steroids as well as we found that the kepra that she was taking was making her wired and she was not sleeping at all. We switched that up as well. Stay positive and always laugh as i hear that is a big part of the battle.

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

    blowing smoke up one's skirt.. I haven't heard that phrase before Nancy.. could it be related to beekeeping?

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

    Apple, thanks for the courageous finch story. Sometimes we have to be that finch.

    Paula, my friends call Target the $100 store. Do NOT try their tiramisu.

    Nancy: wonderful to have a positive care provider. The Pal Care people say that positive patients live longer with better quality. Its hard to do that if your doctors act like morticians!

    Love to all

  • jenn3
    jenn3 Member Posts: 388
    edited April 2012

    I wanted to check in, it's been a few days. The weather been really wonderfu lately, wonderful for the plants.  My perrinals  in the front of the garden are beautiful - Indian Hawthorne in the back, with my daylilies in the front.  My daylilies are over 20 years old from my girls MawMaw.  Back in the late 60's, early 70's from what I understand she used to travel the southern states looking for special daylilies and amarilies, which she shared with me.  I have taken them with me wherever I've lived and taken care of them since.  Then I put annuals in front of the lilies each year, except this year.  I think I need to get that going.  But......my girls put vegetables in the back yard and I've been playing with those some - new to me, never did vegetables.  I'm rambling AGAIN.  Anyway, I just wanted to say I've been feeling pretty good lately and trying to suck it all in.

    I guess what I'm saying I refuse to curl up in bed and give up, exhausting at times, but I want more time and am working hard at ti,

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

    i certainly need plenty of resting time..(curling up is always appealing) otherwise i am fine.

    hoping everyone has a nice wkend.

  • tracy108
    tracy108 Member Posts: 45
    edited April 2012

    i dont know if im doing this ryt or im in the place..but someone was kind enough to pass on this link to...i was diagnosed with brain cancer on thursday this week and am up in the air about it i cant stop crying..you know the stuff..well i need some positive feed back as all im thinking is this is it and i am not gonna see the year out....my lump is small and start rads next week followed by more chemo..i have just got my hair back pixie cut style lengh and now in gonna lose it all again ,,but hey id rather be bald and here than hairy and not....so could you lovely ladies please give me a glimmer of hope....do any of you have your licence back and can now drive as thats another thing i have had smacked at me...and sz's i have told i could have them have any of you had this?......im sorry if this is all jumbled and waffle but i am typing as im thinking it so a bit all over the place.....

    all the breast

    tracy..xx

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

    Dear Tracy,

    You sound sad and scared.  Many of us have been diagnosed with brain mets.  Some have had Whole Brain Rads, Gamma Knife, and Linear Accelerator.  I don't know where you live, but certain cancer centers have neurosurgeons consulting on brain mets and you can ask fir t hat.  Also, I have not met anyone who WAS TOLD not TO drive.

    WE HAVE ALL HAD DIFFERENT OUTCOMES AND SIDE EFFECTS BUT i ALWAYS THINK OF AN OLDER WOMAN HERE WHO LIVED 10 YEARS WITH BRAIN METS.

    keep TALKING.

    hugs,

    Kathy                      sorry for the caps dont feel like retyping

  • tracy108
    tracy108 Member Posts: 45
    edited April 2012

    thank you k-lo...

    as far as i can make out as all pretty new and things are coming bak to me slowly but i cant have op ans the no driving is incase i have a sz whist doing so...was nice to read about the 10 year lady that has given he a boost..

    how long have you been diagnosed if its ok to ask..

    all the breast

    tracy..xx

  • jodimomoffour
    jodimomoffour Member Posts: 258
    edited April 2012
    Hi Tracy,  I was diagnosed with brain metatasis on March 1st.  It sucks, but you will do fine.  The steroids will help you from seizures, and the tears will be non stop if you're anything like me.  My radiologist told me not to drive but I had already stopped because I felt too uncoorsinated to be behind the wheel.  I plan on driving again.  I just have to feel like I am not a danger to me and other drivers.  I had whole brain radiation, and I have to say,it hit me harder than any chemo I have ever been on.  I feel like a million bucks 2 months later but I really thought I would feel like crud forever.  Not so.  Today we are going to a huge family wedding,and I am having my makeup and nails done before.  I only tell you this, because I have been in my jammies about 99% of the time since radiation.  I am slow, tired and a bit weak, but I am ready to jump back in!!  Please try not to be scared.  You have as much control if you picture all of this being a blip on your radar.  Live Live Live!!  I will send my best thoughts across the pond to you!!  xoxox  All the breast to you!!  Cool  Hugs,  Jodi
  • mauimom
    mauimom Member Posts: 53
    edited April 2012

    hi everyone!  just checking in - and hoping you're all finding something enjoyable to do this weekend.  We're off to Keiki (children's) Fair with the kiddos this morning...

     sending strength and aloha to you all. 

  • tracy108
    tracy108 Member Posts: 45
    edited April 2012

    thanx jodi that helped alot..did you have any sz at all im trying to find out if its a given thing or a possibility...i am very teary at the moment but i was when i first got diagnosed with breast cancer..had a mopey weekend then kicked my self up the bum and got on with things..so im hoping i will be able to do the same this time...xx

    thanx again..

    all the breast

    tracy..xx

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

    TRACY, I have had 9 lesions zapped in my brain.  My neurosurgeon says there are no symptoms caused by these small ones.   So those headaches and whoops! are from something else.

    Its weird, I told my DH if I get brain cancer, that's it.    Now I am enjoying every non-treatment moment as fully as possible.

    Its not fair, it sucks, and yet we move on and possibly enjoy life more than before, more than some of our healthy friends.   My friends say I inspire them to live each day with more enjoyment.

  • moderators
    moderators Posts: 8,744
    edited April 2012

    Tracy, so sorry to hear about your situation. We are here for you. Is this brain cancer or breast cancer that has spread?

    We are sending all of you (((hugs))). 

  • tracy108
    tracy108 Member Posts: 45
    edited April 2012

    i was diagnosed with breat cancer in august last year and had chemo up till just before xmas then a left mastectomy in jan follwed by 3 weeks of rads....started getting headaches about 3 weeks back and was taking paracetemol to help..check up i mentioned the heads and thought it may of been a side effect..scan showed a small lump in base of brain..:(

  • banjobanjo
    banjobanjo Member Posts: 187
    edited April 2012

    Hi, tracy108,

    The shock will dissipate a bit when you have a treatment plan and know exactly how things will be done.

    I was diagnosed Stage IV with brain mets in Oct last year and still have days when I can't believe or accept it.  Ups and downs.  After whole brain radiation and a scan in Feb which showed mets had gone, now getting dizziness and nausea when I look at products on supermarket shelves (are the colours confusing the brain or what?) and so have to have another brain scan next week. Once again, full of fear.

    You will find some way through this path of obstacles and fears, as we all do in the end and I wish you all success with your treatment - I started with 20 mets in my brain (and had had no symptoms whatsoever..). Good luck,

    Barbara 

  • Tiger_Blood
    Tiger_Blood Member Posts: 83
    edited April 2012

    I am checking in too. It's been awhile. Had my 6 week check up mets are shrinking. He is giving me 6 more weeks to shrink then it's on to stereo static radiation for the stubborn ones. So, who has had the stereo static? What is it like and what is the down time?

  • bestfriend05
    bestfriend05 Member Posts: 70
    edited April 2012

    tracey, hang in there..as all the lovely ladies here have been advising u, u will get through this..have faith...hope your onc comes up with a super plan for u very soon, we will help u go through this journey too...(big hugs) xx

    tiger blood..!! great great news..!! dont know much about stero static surgery but as i have heard is propbably more easier than  wbr...sending u loads of love and hugs xx

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

    Tracey - hang in there.. it's been 5 weeks since my rads.. maybe 4.. i still am tired.

    stereo static radiation  - maybe music will be playing on a bad radio.. sometimes that is so painful it could be helpful.. .

  • formygirls
    formygirls Member Posts: 154
    edited April 2012

    Tiger Blood,

    Congrats on the improvement.

    I will be having steroactic surgery for my nine lesions on Tuesday. Will let you know how it goes. They told me it would be only an hour long procedure with no meds and no steroids!!. They decided to do this instead of WBR.



    Tracey,

    I have no advise for you as I am new to brain mets myself but wanted to welcome you. I would love to hear of any long timers with brain mets. That would help me also.



    Barbara,

    I hope your scan next week is clear. I hate this living in fear waiting for the shoe to drop again.

  • PJB
    PJB Member Posts: 150
    edited April 2012

    I just cannot take these steroids. Ever since I started taking them, my abilities have gone downhill. Was on 16, rad onc reduced to 12 (regular onc refused to budge from the 16). My ability to walk has gone way downhill, I do drive a little, but only a few blocks. Never had seizure, never had headaches, but now I'm just much more neuropathic, my walking has got worse, I'm craaaaanky and unsocial and out of it. My mind felt a muddle BEFORE the four days of WBR so far. The day before, I was fine. Will be having a really serious talk with rad onc on Monday. 

    It seems like so many of us, longer-timers and recent diagnoses, are just having such a hard time now. KLO, I'm glad you're here to give us some sunshine. Jodi, that really helps, too. Thanks to you all. And 10 years sounds really, really good 

  • nancyh
    nancyh Member Posts: 185
    edited April 2012

    Paula - I know how amazingly tough you are...sorry to hear you so down.  Stupid freaking steriods and brain mets.  I'm so sorry and wish I could do more.  Hang in there.  

    Tracey - I'm also new to brain mets, but have been around for a long time with mets elsewhere.  As others have said, it really helps once you have a plan.  Sending warmest thoughts to you, you've had a lot to take in. 

    Jenn3 - I loved your post about daylillies and your girls' vegetables. Between your posts and Apple's gardening posts, you are inspiring me!

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

    Paula, do you have a neurosurgeon or neurologist?  I'm sorry but these oncologists don't know EVERYTHING.   

  • banjobanjo
    banjobanjo Member Posts: 187
    edited April 2012

    I have been put back on a low dose of steroids (2mg a day) because of the dizzy nausea.  I hated taking steroids before for all the usual reasons.  However, I thought I was on the way out last week and within one day of taking that small dose I feel none of my symptoms and have just eaten a full English breakfast (unknown for about three months) and given the dog a good walk.  I know the bad implication of this is that there probably is something going on in my brain but I would rather feel like this than how I felt last week - sometimes life is that simple. The lift it has given me and my husband over the last couple of days has been remarkable.  I hope I can keep the 'pig look' away with this low dose.

     It does seem as though a few of us are in a dip at the moment.  Because of my upcoming brain scan I have hardly thought about nor am bothered about the full MRI that is coming the following week - when things get really worrying, everything seems relative, doesn't it?  For me, and probably all of us, brain beats everything else and I always feel that in this Stage IV club that nobody wants to be in, we brain mets are a separate table in the corner that nobody wants to join.  I am so appreciative of your company and your comments, your optimism and shared experiences.  

    Have a great Sunday, everyone,

    Barbara 

  • alesta29
    alesta29 Member Posts: 240
    edited April 2012

    Hi Barbara,

    Hope everything goes well with the CT and the MRI. Full English and a walk with the dog sounds good!

    I think your analogy of the table in the corner is a good one. I know I feel envious of those sitting at the bone only metsters table and worry that I'm sitting in the liver section (!) The brain-metsters section is a scary place to be for sure but I lurk and get real inspiration from you all. Guess I'm just waiting for the shoe to drop...

    Paula, stroids are the pits of the pits and hoping your onc will let you reduce a little. So difficult to get the balance right. 

    Big hugs to you all

    Laurie x 

  • lassman
    lassman Member Posts: 49
    edited April 2012

    Tracy/all,

    I was diagnosed with brain mets almost a year ago now after suffering a focal seizure. I had WBR to begin with which worked for 6 months before 5 of them grew back. They were going to start me on Navalabine/Hercepin, but I insisted on Gamma Knife. I had this done on 6 February 2012. I am still on 2mg of the dreaded dex because I am still getting some focal sizures due to swelling. Have been on 2mg of dex for 3 months now and no "hamster chops" yet! Have put on a bit of weight but nothing serious. Hope i can wean down soon. I have an MRI and CAT scan on 3 May to see what is going on in there. I still feel pretty good though.

    Lassman 

  • tracy108
    tracy108 Member Posts: 45
    edited April 2012

    hi ladies thank you all for replying ..

    i would just like to ask another lil question if its ok....

    i am taking 4  2mg of dexamethasone am + pm...today i have found that walking down the stairs is very sore on my knees..like im to heavy for them..does any one else have this or had this? will it pass ? and i also feel like i have had a good drink the night before and got that spaced out kinda feeling if that makes sense???

    and here i am moaning about 1 lil lump when so many of you have way more..i wish you all well if thats the right terms to use..

    all the breast

    tracy..xx

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

    Lassman,I cant wait to hear good news.   Are you feeling positive?

    Tracy, many of us have had our dosages decreased....   my Med Onc gave me high doses but the neurosurgeon said, "you dont need that much..."   whew

  • formygirls
    formygirls Member Posts: 154
    edited April 2012

    I am worried as everyone seems to be on some dose of steroids and my team has given me no steroids. Nothing before and they said nothing during my tx on Tuesday. I asked the neurosurgeon and rad onc about it and they just brushed it off with "not needed".



    Should I be pushing for it?

  • banjobanjo
    banjobanjo Member Posts: 187
    edited April 2012

    Don't push unless you have problems - nobody wants to be on them and I am so grateful that I have been put on a very low dosage.  

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