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Brain Mets Sisters

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Comments

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

    I saw The Three Stooges and Dark Shadows and although I did not laugh to the point of stomach ahce, as with Bridemaids, say, they were both very good light entertainment.    Both also reflect my nostalgia for those days....

    Hersheys kisses w almonds are an excelllent source of happiness.

  • jodimomoffour
    jodimomoffour Member Posts: 258
    edited May 2012
    Quentin Collins?  My heart be still!  Anything chocolate sounds divine!!Surprised
  • jodimomoffour
    jodimomoffour Member Posts: 258
    edited May 2012

    Gratitude list...

    I am so thankful.  

    My marriage would have to be #1.  My husband is the best thing that ever happened to me.  He seriously is the best friend I ever had.  He is beyond good to look at.  His humor is unparalleled, if not wildy inappropriate.  No one has ever made me laugh as hard.  He is loyal. He holds my youth in his heart and memory.  He has never waivered in his love and committment to me, and our bratty children.  We were ridiculous when they were young and we were always an arrival.  We thought they were the cutest, most adorable.....Everyone else did not have the same eyes!!!  I have so enjoyed this ride with my partner in crime.  Everyone should have one!!!

    I have 4 healthy children who have life by the tail!!!  They love their family, especially daddy, and they cannot live without their siblings.  They keep incredibles secrets for each other!

    I was fortunate enough to be born and raised in Sonoma County.  I seriously am surrounded by beauty and animals (same thing).

    To be continued... 

  • jodimomoffour
    jodimomoffour Member Posts: 258
    edited May 2012

    Dad ^^^^

  • Reneepals
    Reneepals Member Posts: 64
    edited May 2012

    Jodi,

    I love your love! Your feelings come across in your writing. To cool, thank GOD for our blessings!

  • Reneepals
    Reneepals Member Posts: 64
    edited May 2012

    I do not understand the difference in the treatment process between the UK and the States. Why is it a standard of 10 WBRT here and you ladies in the UK and Canada only get a max of 5?

  • Reneepals
    Reneepals Member Posts: 64
    edited May 2012

    Apple,

    I just caught up on your reply to my roid rage post. Thank you. The info you gave me was so valuable. They make me feel good and look like crappolla. But who gives a shit about the crappolla at this point.  On another vain note, I have an amazing "radiation" tan.

  • Hopbird
    Hopbird Member Posts: 25
    edited May 2012

    I started steroids today because of swelling from some radiation done awhile back...not really that unusual.  I don't look forward to doing without sleep, but I already think I feel better, so I'll live with it!  I have planting to do tomorrow, so I told my husband maybe it's good if I'm up early...it will be cooler!Cool  Hopefully this is a temporary thing...

    And I think the WBR versus the surgery IS controversial right now, in fact my radiation oncologist said so.  I think for him, he tends to do WBR if the mets are all over, and more directed stuff if they are confined.  I DO take Tykerb, mostly for my brain, but the Xeloda and I didn't get along well so it went away.  There is some evidence it crosses the BBB for people...if it's working!

  • Reneepals
    Reneepals Member Posts: 64
    edited May 2012

    Hop,

    I really do think they are using these technolgies to "control" this damn disease. Which is a good thing, why zap it if it WBRT does the trick and then use it when need be, makes sense to stupid ole me.

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

    Jodi you have to invite us out there please share!



    ;-((( why is I'm the only one with eye Mets? :~~~~

    But I feel great, gonna do container gardening, keep.it.real.

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

    Jodi you have to invite us out there please share!



    ;-((( why is I'm the only one with eye Mets? :~~~~

    But I feel great, gonna do container gardening, keep.it.real.

  • tracy108
    tracy108 Member Posts: 45
    edited May 2012

    hi ladies..just 2 lil random questions i would like to ask....

    i wake up bright headed and un fussled then have to take meds(steriods) they make me feel worse after  i take them do any of you find that?

    and post wbr do you get a lot of nasty stuff coming away from ya nose?

    did say that they was random sorry ..xx

  • alesta29
    alesta29 Member Posts: 240
    edited May 2012

    Tracy

    How you doing? Where ru being treated in the UK (just me being nosy - I'm in Northants but go to the Marsden)

    Stroids are the absolute pits and I hate them more than chemo. Without sleeping tabs, I average around 2-3 hours a night, usually falling asleep around 4am.

    I'm only taking 4mg Dexamethasone in the am (should be twice per day - but I'm hanging off taking more than I need to until I see the radio-onc tomorrow). Spend the day buzzing which isn't too pleasant as it makes me a bit speedy and I manically rush around doing stuff when I figure I would be better lying down. ALso my concentration isn't too good which is a real fag as I have 30+ 5000 word essays to mark in the next couple of weeks (sigh!)

    Haven't done the WBR yet (and Renee - I don't know why there is a difference in the no of treatments - guess if it works, it works!) but I know others have complained of nose / taste / hearing issues (as wll as the attractive burned-forehead look...)

    Jodi - Lovely post about your darling man and family.

    Kathy - One of the UK women had eye mets which I know didn't cause her too many problems. Hope you're coping with yours.

    Hop - hope you can use the energy productively!

    Laurie x 

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

    just for the record i had 14 WBR zaps and know someone who had 21

  • banjobanjo
    banjobanjo Member Posts: 187
    edited May 2012

    I'm in Germany and I had 21 consecutive weekday treatments.

  • Reneepals
    Reneepals Member Posts: 64
    edited May 2012

    Tracey when I eat with the steroids they are nicer to me.

  • Reneepals
    Reneepals Member Posts: 64
    edited May 2012

    When they 1st told me about the treatment, they said as the max, it was 25. Interesting.

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

    i remember when i was first given steroids.. i was on the red devil and some other ungodly chemo.. i just loved them.. I had so much energy.. i could clean for hours.. then i saw my face.. all bloated and icky.

    now i hate hate hate them. but i haven't had any for a couple months at least and i am pretty happy.

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

    Dear Tracy, you dont have to tread so lightly.  Your questions are as important as any!   My "roid" history has been short term; very manic, clean clean clean, eat eat eat, then very  grouchy coming off.

    I HAVE discovered that if you probe the right doctor, namely a neurosurgeon/neurologist, they will often cut down the dose.  They know what havoc it wreaks and know whether your brain really needs that much.

    Apple, do roids help your appetite/  How about the magace is it working/

    My Breast Friend and I were diagnosed and treated together initially, then 5 years later had recurrences, mastectomies together.   It was sad but we had each other.  It took me a while to accept that she was not joining me on the Stage 4 journey.   But nobody to kvetch about eye mets with, well, Im really happy for you all, really... 

  • PJB
    PJB Member Posts: 150
    edited May 2012

    Ah, the roid rage. I started out at 16 mg per day, altho I'd had no headaches, seizures, etc., as part of my lovely batch of symptoms I'd been having before SURPRISE they found the brain mets. But 16 mg was the standard according to what they usually do (and since onc's aren't rad oncs, they do what is standard)... But I had real problems (as you guys know) with all the  stupid drug's side effects. So I complained to rad onc, who dropped me to 12 for a week or so.... to make a long story shorter, K-Lo helped convince me to keep pushing. So, went down to 8, then 4, then 2. I am on .75 for another week and a half and then done! 

    Kathy, it MUST be lonely not to have someone to ask questions of/support/lament WHY ME/ all of what we do here with someone with eye mets! Gosh it does seem to me there was someone here who didn't post much.

     Hope you all have a good day.... my sister is making me some chemo scarves/caps. She's visiting for a couple days. Right now, waiting for her to come home with some fattening and lovely pastry of some kind from Panera. 

  • Hopbird
    Hopbird Member Posts: 25
    edited May 2012

    I'd had two surgeries and that was my only experience with steroids until they recently found some radiation necrosis.  They didn't put me on steroids as a matter of course, and I woulda pushed back pretty hard on that.  I see the point in taking them when I need them, but not just because!  And not long term if I can help it.  It definitely affects my sleep and my appetite!

    And Kathy, I see people and try not to wonder why I'm not one of "them" more than I care to admit.  I just try not to think about it and focus on the fact that maybe this is affecting someone...or several..that we'll never know about.  I've seen that happen with others.  And, as I've told my boys when a friends dad died for no good reason one afternoon...sometimes S**T just happens and we won't "get it."

  • lassman
    lassman Member Posts: 49
    edited May 2012

    Dear all,

    Well, I got results from the scans at BUPA. The bottom line is that half of the tumours are dead and the other half are still viable and enhancing. So a 50/50 result. My neurosurgeon wants to have another go at the 4 viable ones since there is some evidence that 4 of them have been damaged but are not dead. He thinks a second blast might finish them off. I have agreed. He may do proceedure next week if gamma knife is free.

    One problem. My balance has suddenly gone for a burton. Yesterday I threw up all day and could not walk. Today no vomiting, but having walking issues. How will I get to BUPA Cromwell for the treatment? Anyone got any good suggestions for balance/nausea meds?

    Lassman 

  • jodimomoffour
    jodimomoffour Member Posts: 258
    edited May 2012

    Hey guys!!

    Tracy nothing running from your nose or mouth is out of the normal.  My nose runs the first few hours I am out of bed.  I have spoken about my copious amounts of saliva.  So gross.  It's been 3 months since WBR (10) sessions.  I haven't done those dreaded steroids since 3 days after my treatments.  They made me that whackie.   Miserable really.  My doc thought I should go back on a very low dose for nausea, appetite, better mood, energy etc.  Per usual I said absolutely not.  The side effects are not worth it for me.  Insomnia?  20 pound weight gain, when I already have difficulty moving this body the way I want to.  First and  foremost, make sure you take them to prevent seizures, and make sure you're on the lowest dose reasonable.  It so sucks in the beginning.  I always pray to just feel normal.  This feeling blechy has got to stop.  I already walk like a drunk, I shoudn't feel like I have a hangover everyday.Tongue out 

  • jodimomoffour
    jodimomoffour Member Posts: 258
    edited May 2012

    Lassman, I hope you have someone's hand to hold.  Usually that's all it takes.  As far as anti nausea drugs, they have a bunch of good ones.  Ask your Doctor.  They actually help a lot.  I am so sorry about the sickness.  I would take anything but that.  I have a new respect for women who get morning sickness.  I never did.  Lucky.

  • jodimomoffour
    jodimomoffour Member Posts: 258
    edited May 2012

    PBJ, have a fabulous time with your sister.  Nothing is better than spending time with someone who knows you like no other!!!  I heart sisters!!

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

    Lass,

    A. Sudden loss of balance is something I would call the on-call team about.   Could be just ear, could be meds, but if it continues today, please call someone.

    B. 50/50 is progress.   Hope Gamma is available as  soon as you want to get there.

    kathy

  • Reneepals
    Reneepals Member Posts: 64
    edited May 2012

    K-Lo,

    There was a wonderful sister here named Saint. I think she had eye mets for 6 yrs. Maybe you could look up some of her older posts. She was very active about writing about it.

  • tracy108
    tracy108 Member Posts: 45
    edited May 2012

    thank you for your replies they have helped....i hate this urky feeling....

    i am now down to 2 x 2mg of dex once a day soon to be 1 :) its just hard to understand why i feel worse taking them when they are ment to be helping???? but i was told i have to reduce slowly so i am.....

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

    Oy, I just read Saint's last 80 pages.  What a positive soul.  Oh what a story!

  • jodimomoffour
    jodimomoffour Member Posts: 258
    edited May 2012
    Kathy, you are always welcome in my home. Northern California is where it's at.Cool  And I am beyond sad for your loss.  Best Friends are hard to replace.

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