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idlehunters
idlehunters Member Posts: 1,787
Hey Guys......
I have been putting off posting until I had all my ducks in a row...... I guess the row is as straight as its gonna get for now. I have had some very minor lung mets recur but that is not the issue. I went to the hospital a few weeks back with a major headache. I never get headaches so it was odd. I had just had a brain scan the month before and all was fine. BUT.....yes...there's that friggin BUTT.....not clear no more. It appears I have a small brain met in the back left on my head. Actually there is 2 but the second one is VERY tiny. SOOOOOOOOOOO....there it is.....there...I said it....god it's a scary thing to say.....MY BRAIN?????? REALLY????? Everyone knows when it goes there....you are dead....it's over....ain't the the general assumption???? I have always thought that my entire life so how do I tell ME any different now? ALL the people WE know on this board that just DON'T make it thru brain mets. You all know who I am talking about. God has blessed us with TaraHK...... I love you Tara and thank God for your brain met success and just that I have had YOU to talk to. I would not be getting thru this VERY difficult time if it wasn't for you. Thank you Thank you Thank you!

I have learned that treating brain mets is way more advanced than I had thought. Well.....heck...I tried NOT to think about any brain anything. They can actually do MORE with my brain than they can with my lungs! Since I have found all this out I do have to say I am feeling more confident that I will beat this recurrence just like I did the 4 liver mets and 20+ lung mets. As long as you guys hang with me and help me make it thru the nite....I think it will be ok.

I start on Folfox tomorrow. Anyone have any suggestions as far as that goes? I am confused on that. Folfox can break the brain/blood barrier? Anything I should do for helping with neurapothy? The herbs my TCM doc is giving me will be targeting that as well.

Next week I will be getting Cyberknife on those 2 mets and that is 1 treatment and they say no other radiation is needed. They wanted me to have 1 treatment of the Folfox before the Cyberknife. I don't know how long that will continue.

CRAIG.....our worst nightmare come true???? Go figure!!!!

Sooooo....now I got you all up to date. Recurrence #5....... It's a biggie...... BUT....it can KSS MY BUTT!!!!! Love you guys!!!

Jennie
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Comments

  • pete43lost_at_sea
    pete43lost_at_sea Member Posts: 3,900
    love your attitude
    hi jennie,

    i wish it were not , but now you got another fight.

    i posted about david sh...... who wrote anticancer
    he had brain tumour and a recurrence and lived very very well for about 20 years.

    you got to read the brain that changes itself, it might give you some hope and faith that our brains can achieve lots.

    in my gcmaf post manwithnoname described his childs protocol, it looked impressive to me.
    he has been through a few brain tumour surgeries, maybe you could pm any questions. he is big on alternative therapies that are going to keep you alive.

    really big hugs, on the day you get this news and i get good news.

    hugs,
    pete
  • idlehunters
    idlehunters Member Posts: 1,787

    love your attitude
    hi jennie,

    i wish it were not , but now you got another fight.

    i posted about david sh...... who wrote anticancer
    he had brain tumour and a recurrence and lived very very well for about 20 years.

    you got to read the brain that changes itself, it might give you some hope and faith that our brains can achieve lots.

    in my gcmaf post manwithnoname described his childs protocol, it looked impressive to me.
    he has been through a few brain tumour surgeries, maybe you could pm any questions. he is big on alternative therapies that are going to keep you alive.

    really big hugs, on the day you get this news and i get good news.

    hugs,
    pete

    Thanks Pete.......
    Yes. I am learning quite a bit new brain stuff! .... You expecting some good news today????? Share ...share. :-)
    Jenne
  • steved
    steved Member Posts: 834
    Bad news great attitude
    As so often here it is not great news you have to share and I am sorry to hear of this latest 'but'. However, you have been through many 'buts' before and beaten more than you ever would have thought. IT is undoubtably going to trigger those negative thoughts that brain mets mean you are dead but those are so similar to what we all have at each set back-I well remember my first diagnosis of CRC having the same thoughts, yet here we all are.

    Get some knowledge on this as it will help balance those thoughts. No one can say this isn't serious but alot can be done- as you say there are more treatments for brain mets than those in some areas of the body. It used to be whole brain radiation for this and cyberknife has made a huge difference to that so seems a good first step. Chemo becomes a problem as the brain has a barrier that protects itself from a lot of drugs that means it may be less effective but can still sensitive the tumour to the radiotherapy. Surgery is an option for some brain mets and an opinon on this will be critical.

    Take some time though to get your 'ducks in order'- each time we take a knock back it messes up our ducks again. Just because its number five for you doesn't mean you won't feel this one in the same way. Look after all of you and allow yourself some time to get your head around this.

    steve
  • idlehunters
    idlehunters Member Posts: 1,787
    steved said:

    Bad news great attitude
    As so often here it is not great news you have to share and I am sorry to hear of this latest 'but'. However, you have been through many 'buts' before and beaten more than you ever would have thought. IT is undoubtably going to trigger those negative thoughts that brain mets mean you are dead but those are so similar to what we all have at each set back-I well remember my first diagnosis of CRC having the same thoughts, yet here we all are.

    Get some knowledge on this as it will help balance those thoughts. No one can say this isn't serious but alot can be done- as you say there are more treatments for brain mets than those in some areas of the body. It used to be whole brain radiation for this and cyberknife has made a huge difference to that so seems a good first step. Chemo becomes a problem as the brain has a barrier that protects itself from a lot of drugs that means it may be less effective but can still sensitive the tumour to the radiotherapy. Surgery is an option for some brain mets and an opinon on this will be critical.

    Take some time though to get your 'ducks in order'- each time we take a knock back it messes up our ducks again. Just because its number five for you doesn't mean you won't feel this one in the same way. Look after all of you and allow yourself some time to get your head around this.

    steve

    Hi Steve
    I have already spoke to a surgeon. Actually, I have been thru all steps needed to get me going on course. That's what I have been doing for the last month. The course is set.... I have a path to follow. I feel confident......just need YOU guys for backup! : WHERE IS CHERYL HUTCH???? I really need her to tell me....just like in the old days...NOT to be a winey baby!!!! LOL

    Jennie
  • ron50
    ron50 Member Posts: 1,723

    Hi Steve
    I have already spoke to a surgeon. Actually, I have been thru all steps needed to get me going on course. That's what I have been doing for the last month. The course is set.... I have a path to follow. I feel confident......just need YOU guys for backup! : WHERE IS CHERYL HUTCH???? I really need her to tell me....just like in the old days...NOT to be a winey baby!!!! LOL

    Jennie

    Hugs Jennie
    Not much I can say other than I soooooo wish it wasn't so. You are one of the good guys,when is this crap disease going to leave you alone. Hugs again and I hope they cyberkfife the little sods right out of your head so they don't ever come back..Ron
  • Sundanceh
    Sundanceh Member Posts: 4,392
    Hi Jen:)
    "The Crazy Colon Train"

    I always figured I'd get there before you did...as I've said, I'm terribly sorry for this. The 3 cases we've had here prior did not have the happy ending we all wanted.

    Tara is holding the light and shining it through the darkness for all of us here, especially you at this time. I'm glad that she has been able to help and comfort you. Nobody else but her would even do for you right now.

    I'm hopeful for all good things for you - you must be scared - I know you are - and I recognize the ruffling feathers and the strength you are portraying...but see, I know Jennie...pretty dam good too....and I know that underneath it all, that you are apprehensive and frightened.

    Which is okay by me...I'd be worried about you if you weren't. I would be too...doesn't mean anything other than you are human and this is scary stuff.

    But, the bravado is for the group....this is me you're talking to:)

    Get well, Jennie...you know how I feel - about everything:)

    Love/Craig
  • PhillieG
    PhillieG Member Posts: 4,866
    Everyone knows when it goes there....you are dead
    Tell that to Lance Armstrong....
  • geotina
    geotina Member Posts: 2,111
    Jennie:
    I love you my friend. I want so much for this to just be a bad dream for you. Stay strong. Lean on your loved ones and on us.

    Love and Hugs - Tina
  • maglets
    maglets Member Posts: 2,576
    geotina said:

    Jennie:
    I love you my friend. I want so much for this to just be a bad dream for you. Stay strong. Lean on your loved ones and on us.

    Love and Hugs - Tina

    elder
    Cheryl is not here today Jen so as an "older" ??? well seasoned??? female member of the forum hahah none of that sounds too great.....I am here to tell you to stop being a whineeeyyy baby!!!!

    NOT......Jennie you amaze me. What a great wonderful attitude you. NO 5 ......that is just totally the pits there girl. I send you great love and deepest respect......

    mags
  • KathiM
    KathiM Member Posts: 8,028
    Actually, Jennie, I DO have a story...
    It started as lung cancer, but mets to the brain....and she is STILL alive and kicking butt!!!!

    It's one of my computer client's office manager...lung (primary), brain mets, breast (primary), thyroid (pending).

    BUT, 3 years later...she is still around, and kicking cancer's butt!!!

    BIG hugs to you, dearheart!!!

    Hugs, Kathi
  • KathiM
    KathiM Member Posts: 8,028
    PhillieG said:

    Everyone knows when it goes there....you are dead
    Tell that to Lance Armstrong....

    ...and the old lady chimes in.....
    and many, many, many others....remember, my tag line after round 2 (primary breast after primary CRC)....."I was given 6 months to live 8 YEARS ago...guess I don't do what I'm told...ask my mom!!!"

    BIG hugs, Kathi
  • mukamom
    mukamom Member Posts: 402
    geotina said:

    Jennie:
    I love you my friend. I want so much for this to just be a bad dream for you. Stay strong. Lean on your loved ones and on us.

    Love and Hugs - Tina

    Jennie
    Crap. A whole different ballgame with new rules and stratagies to learn. And it sounds like you are well on your way to learning it all.

    Thoughts, prayers, and good vibes coming your way.

    Angela
  • LivinginNH
    LivinginNH Member Posts: 1,456
    Hey Jennie,
    I'm so sorry to


    Hey Jennie,

    I'm so sorry to hear that you have yet another battle on your hands. But you you've kicked cancer's butt before, so go at it swinging girl!

    All my best, take care,

    Cynthia
  • lauragb
    lauragb Member Posts: 370
    And you will kick Recurrence
    And you will kick Recurrence #5's butt! No Whiny baby, you. You are strong, resilient and remind me not to be a whiny baby with your actions. Yep, there's lots going on but you will prevail and be here for us. I hope the support from here will help you through this trial you must endure. Sending love, light and prayers your way. Laura
  • omrhill
    omrhill Member Posts: 125
    Hugs and prayers to you
    So sorry about this new bump in the road, but you will get past it! Please don't feel the need to be brave here. We're all in this together and we all want to help you.

    Hugs,
    Robin
  • Phil64
    Phil64 Member Posts: 838
    KSS MY GRITS!!!
    I love your attidude Jennie!!!

    And I believe you'll beat this recurrence!

    "Know for a fact that with God’s
    help you can take what you have to
    take courageously and victoriously."

    Norman Vincent Peale
  • sasjourney
    sasjourney Member Posts: 395
    Phil beat me to it!
    Jennie,

    I was going to tell you to think of Lance Armstrong, but Phil beat me to it:) I know you will get through this and we are all here supporting you any way we can. You are a fighter so this cancer just doesn't stand a chance! It is going down!!!!!

    Sending you lots of hugs,
    Sara
  • annalexandria
    annalexandria Member Posts: 2,571
    We all know attitude isn't everything...
    but your take-no-prisoners approach has GOT to make a difference! And while brain involvement is naturally terrifying (I think for me because the brain seems to be more "me" than other organs), there are people living with brain tumors successfully. My friend's husband has had brain cancer, with many recurrences, for the last seven years. He's still golfing, traveling and enjoying life, so it can be done. You can do it too! Sending tons of strength and positivity your way-Ann
  • pepebcn
    pepebcn Member Posts: 6,331

    We all know attitude isn't everything...
    but your take-no-prisoners approach has GOT to make a difference! And while brain involvement is naturally terrifying (I think for me because the brain seems to be more "me" than other organs), there are people living with brain tumors successfully. My friend's husband has had brain cancer, with many recurrences, for the last seven years. He's still golfing, traveling and enjoying life, so it can be done. You can do it too! Sending tons of strength and positivity your way-Ann

    Feel so sorry Jennie , I'm not going to be very long on it
    I don't want give you just a support sentence that may sound empty or false, Just tell you something real , be optimistic, my cousin had a brain tumor two years ago ,so ciberknife and now no activity there , dry,dead ( the tumor). So..... it's not somebothy that somebody friends know, is my cousin so it's a first hand reality , I see her at least every 2 weeks!
    God bless you.
  • kristasplace
    kristasplace Member Posts: 955
    With you, Jennie!
    Jennie, you are so brave! I used to get a bad taste in my mouth when people would say that to me because i always thought, "hm. i'm not brave. I'm just doing what i got to do to survive, and anyone would do the same thing in my place." But that isn't necessarily true. It's our attitudes that keep us alive. For as long as we can, we believe we'll survive, and we do. Even when the pain is so unbearable we can't stand ourselves, or when we get the news that yet another hardened battle is about to begin when we just recovered from the last recurrence...We keep our spirits high, and we believe in our hearts that it won't win. Not ever!

    I'll be sending super positive energy your way the whole time.

    Hugs,
    Krista
  • smokeyjoe
    smokeyjoe Member Posts: 1,425
    PhillieG said:

    Everyone knows when it goes there....you are dead
    Tell that to Lance Armstrong....

    Okay....good going
    Okay....good going Phil....as I read Jennies post I was thinking...but Lance Armstrong had brain mets didn't he...and you answered that one for me. Jennie....SERIOUSLY WTF....sheesh....I know you will go after it and beat it down like you've done so many times before . Keep us posted.
  • z
    z Member Posts: 1,411
    Jennie
    I visit the Inspire web site where there is a 12 year survivor of stage IV lung cancer with brain mets. He has had surgery for the brain mets. Also on the lung cancer discussion on CSN there is a poster with brain mets who has had the cyberknife and is doing well. You might want to do a search on the lung cancer discussion board. I wish you the best. Lori
  • lesvanb
    lesvanb Member Posts: 905
    Oh Jennie
    I was so sorry to read this. You've been through a lot already, and now another fight on your hands though I think a good attitude can deal with it well (and I'm not talking just adopting positive thinking or motivation). An old martial arts proverb says, "Knocked down seven times, get up eight!" Easier said than done, right? But you've got your ducks in a row; you're making choices; you've rallied your personal power. All to do your best Jennie. Even when scared sh*tless. I'm with you girl.

    Love, Leslie
  • Kathryn_in_MN
    Kathryn_in_MN Member Posts: 1,252
    sorry
    So sorry you have something new to deal with again. But it sounds as if you've caught this quite early and are attacking back quickly! They have come a LONG way in treatment options for the brain, so your chances now are better than in the past. So you can't really compare yourself to someone who had the same situation years earlier, or someone whose brain mets weren't found until they were larger or had many of them.

    #1, #2, #3, and #4 haven't been a match for you. I have a strong feeling #5 doesn't stand a chance either! Cancer should just give up and leave you alone, rather than trying to come back and battle again, because it always loses.
  • CherylHutch
    CherylHutch Member Posts: 1,375

    Hi Steve
    I have already spoke to a surgeon. Actually, I have been thru all steps needed to get me going on course. That's what I have been doing for the last month. The course is set.... I have a path to follow. I feel confident......just need YOU guys for backup! : WHERE IS CHERYL HUTCH???? I really need her to tell me....just like in the old days...NOT to be a winey baby!!!! LOL

    Jennie

    Checking in for Duck Patrol!!
    Here I am, Jenn!! Hey... long time no see... are you being a whiney baby because your ducks have gotten out of line??? For heaven's sake, girl... get the d*mn ducks a pond!!! :D:D:D

    Ok... looking over what you've written, it's totally understandable why, when given this information you freaked out!! I'm with you... when someone starts playing around with saying there's something in our brain, it's near impossible to say, "Oh, that little thing! P-tooey!" I would have a total meltdown, so good for you for keeping it a bit more together than I would have ;) Now, having said that... it sounds like your surgeon and oncologist and all involved have a plan all set up and ready to implement. Heck, it doesn't even sound like they are guessing at what they should be doing... they know. And they seem pretty darn confident as to what this plan should be and why. So your job now is to have trust in your team, relax (easy to say), and go with the plan. If it means you have to take time off and just hang out at home, laze around and don't go lifting anything heavy, then so be it... that will be your job. Good time to catch up on any taped shows you might have been meaning to get to :)

    And, when push comes to shove... remember the motto! ONE friggin' hurdle at a time!! You can forget the lungs, the liver, the toes, the fingers... and just put your positive focused energy on these two itty bitty brain zits. Begone, you brain acne, be gone!! You can always go back to chasing the ducks and getting them to line up later ... but for now, give them a pond to play in :)

    Cheryl... duckless in Vancouver
  • maglets
    maglets Member Posts: 2,576

    Checking in for Duck Patrol!!
    Here I am, Jenn!! Hey... long time no see... are you being a whiney baby because your ducks have gotten out of line??? For heaven's sake, girl... get the d*mn ducks a pond!!! :D:D:D

    Ok... looking over what you've written, it's totally understandable why, when given this information you freaked out!! I'm with you... when someone starts playing around with saying there's something in our brain, it's near impossible to say, "Oh, that little thing! P-tooey!" I would have a total meltdown, so good for you for keeping it a bit more together than I would have ;) Now, having said that... it sounds like your surgeon and oncologist and all involved have a plan all set up and ready to implement. Heck, it doesn't even sound like they are guessing at what they should be doing... they know. And they seem pretty darn confident as to what this plan should be and why. So your job now is to have trust in your team, relax (easy to say), and go with the plan. If it means you have to take time off and just hang out at home, laze around and don't go lifting anything heavy, then so be it... that will be your job. Good time to catch up on any taped shows you might have been meaning to get to :)

    And, when push comes to shove... remember the motto! ONE friggin' hurdle at a time!! You can forget the lungs, the liver, the toes, the fingers... and just put your positive focused energy on these two itty bitty brain zits. Begone, you brain acne, be gone!! You can always go back to chasing the ducks and getting them to line up later ... but for now, give them a pond to play in :)

    Cheryl... duckless in Vancouver

    hahahha
    where in the name of whatever did you swoop in from?????? hahahah lovely to see you girl and there I was pretending to be you.....should have known better.

    Yayyyyyyyy Cheryl is here......hug

    mags
  • Doc_Hawk
    Doc_Hawk Member Posts: 685
    Hey Jennie
    You are a big time fighter and you can beat this little [email protected]@rd! You're Rocky Balboa and it's Peewee Herman, so just get in there and kick it's nasty little butt! Never fear that you're alone, darlin. We're all here for ya. I'll PM you my contact info in case you ever need to talk, have a shoulder to cry on, whatever. Anytime, night or day, I'm an insomniac so I'm up until the wee hours.

    My prayers are with you!

    Doc
  • CherylHutch
    CherylHutch Member Posts: 1,375
    maglets said:

    hahahha
    where in the name of whatever did you swoop in from?????? hahahah lovely to see you girl and there I was pretending to be you.....should have known better.

    Yayyyyyyyy Cheryl is here......hug

    mags

    Swooping in...
    Hellooooooo my little Eastern (as the duck flies) Canuckian!! Oh, how I've missed you... and I thought you had left for the wilds of Ontario for the summer so I was going to have to wait until September to see your smiling face??? Don't tell me Ontario has gotten WIFI in the wilds of lake country???

    Oh, you know me... I swoop in, get yelled at and chased out with a broom, then swoop back in when least expected!! I hear we all have to round the troops up, find suitable uniforms (I'd like one with glitter and sparkles this time, please!!) and go duck herding?? I'm not sure how we break it to Jenn that it is not in Duck Behaviour to line up in straight rows, but I suppose if we must, then it's Duck Drills and Bills we must do!!

    So now... what's new with you?? Do spill the gossip!! :)

    Cheryl... needing a uniform in Vancouver :)
  • tommycat
    tommycat Member Posts: 790
    Just adding a
    Just adding a hug!!!!
    Tommycat
  • herdizziness
    herdizziness Member Posts: 3,624
    Jennie
    Well girlfriend, I started getting tears in my eyes as I read the brain mets, then I swept them away when I realized, [email protected] it's Jennie we're talking about here, she'll make it through.
    You caught them early, advances are made every day, and you're just the one to beat it, others have, you will too. Remember we're supposed to meet up with Craig in Texas one of these days, guess it'll just have to wait until you get rid of this latest [email protected] round of those pesky arsed tumors.
    I'm here for you Jennie. Sending everything I have your way including yelling at those mets of yours to shrink up and leave your head, we blondes don't need any extra interference in our heads then we've already got. Glad your plan is in place.
    Love at you,
    Winter Marie