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Brain Mets Sisters

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Comments

  • tcrs
    tcrs Member Posts: 6
    edited March 2012

    Lorie 81 so sorry about your mom.  You are a wonderful daughter.

  • jodimomoffour
    jodimomoffour Member Posts: 258
    edited March 2012

    Hi Lore81.  I am so sorry and sad about your mom.  It sounds like she has a beauiful daughter and that is more than most.  Your mom's passing sounds peaceful and loving.  You did a very nice thing for your mom.  I am a mom and just a few years older than your mom.  Trust me when I say, you were the best thing she ever did.  She is and always will be with you.  It's hard when life goes on, but as always, life is for the living.  Honor your mom, and live really well.  Take it one day at a time.  Be kind to yourself and remember how much love there is between you and your mom.  Hugs and hugs. Jodi

  • bestfriend05
    bestfriend05 Member Posts: 70
    edited March 2012

    Lore81, I am very sorry to hear about your mom..wishing u courage to come through this difficult time, sending u a lot of prayers, love and hugs xx

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

    so sorry Lore81........... I lost my momma this last summer.  I loved her to pieces.  She was kind of a high strung gal, and her last 10 years were an absolute blessing.. They put her on an antidressant and she turned into the sweetest failing thing.  I miss her dreadfully, wear her wedding band and talk to her daily.. She is with me now more than ever.  My sincerest condolences and may peace fine you.

  • kalaoamom
    kalaoamom Member Posts: 15
    edited March 2012

    aloha to all, just caught up with all of the posts. With spring break for the kids, a 75 yr old mom visiting to help and having my dog knock her over and break her arm in 2 places and the last week of treatment no computer time. I AM DONE!!! I have completed 25 treatments total rad 5000gy. let the healing begin. The last week I started feeling a little weird and did get put on low dose of steroids. 2mg 2x a day through today. Then 1mg 2 x a day for a week. Dr explained it as start of brain swelling more than Boswellia could handle??? From cell die off and white blood cells attacking and causing inflammation. So I took away this as a good thing meaning radiation was working. F/u scan 6-8 weeks. Still have a lot of hair but buzzed cut because I want to start even. Putting warm coconut oil with some drops of lavender oil on my scalp nightly wrapped in a moist warm towel. feels wonderful! Have not had a day in the last 7weeks on this new adventure that I have given to myself so After the kids are to school for the next two weeks I am laying low and trying to get energized again!

  • jodimomoffour
    jodimomoffour Member Posts: 258
    edited March 2012

    kalaomom, your poor mom!!!  Bad doggie!  The warm coconut oil and lavender oil sound awesome.  I am definitely trying that tomorrow.  Rest rest rest.  You will be back to normal in no time.  Hugs.

  • mommydoxie
    mommydoxie Member Posts: 11
    edited March 2012

    Lore81--I am sooooo sorry for your loss.  I know it was a fight for you as well as her.  It may not help the pain of the loss right now, but the year you spent with her will always be your most special and you can rest knowing how wonderful a daughter you were to take care of her like you did.  Your mom knows how much you loved her.  Pain will lessen with time, but the memories will always be with you.  God bless!

  • banjobanjo
    banjobanjo Member Posts: 187
    edited March 2012

    Lore81 - sorry for your pain.  Such love does not die; you carry it around with you all the time.

  • jenn3
    jenn3 Member Posts: 388
    edited March 2012

    I truly am sorry to hear about your mom.  It gave both of you what you need and needed - beautiful memories. And..........I hope that the times you've spent together eases some of the pain you're feeling right now.

    (((hugs))) Jenn

  • jodimomoffour
    jodimomoffour Member Posts: 258
    edited March 2012

    Ok.  So tomorrow it will have been a week since WBR.  I still have horrible headaches and a little nausea.  I am no longer taking steroids.  Advil, wellbutrin (hot flashes) and adavan at night to let me sleep.  I haven't eaten any pot brownies today, but I know I will.  Stoned beats nausea everytime.  My youngest, Alyssa, made chocolate chip cookies, bless her soul.  They are fabulous.  My hubby, Mark and son, Chase are golfing and grocery shopping.  I am contemplating a bath.  Mark and I are supposed to pick out throw pillows and couch blankies for our new sectional, which is coming to our coast house Thursday.  We'll see if I make it to the mall.  I am not really talking because of my jacked voice, so this typing is my communication.  I am hoping by this time next week, I will be twice as strong!!  Now, where is Mark with my sherbert?  I hope everyone is having a good day.  Hugs to all.

  • bestfriend05
    bestfriend05 Member Posts: 70
    edited March 2012

    hello all,

    mum has mild dull pain at site of brain surgery since last 2 days, she had the surgery september 2011..i find it easier if i ask u guys questions first, it helps me put things in to perspective..pls give your inputs..

    jodimomoffour ..good to hear from and good to know u have such a wonderful supporting family..hope u get rid of the side effects soon..

    love and hugs xx

  • Rohm
    Rohm Member Posts: 18
    edited March 2012

    bestfriend-my craniotomy area (surgery in Sept) got sensitive during my radiation treatments and I still sometimes get a dull pain there (especially if I'm sleeping on that side).  

    jodi- bummer about the nausea.  I'm still weaning off the steriods and struggling with eating EVERYTHING!  Trying to combat it with some long dog walks.  I love hearing about your family (makes me smile).  Enjoy that sherbert!

     I'm done with radiation, and I'm getting off the steriods, but the side effects are really kicking in.  My legs have gotten really skinny and weak.  Walking is fine, but stairs are hard and getting up off the floor is really hard.  Those of you who are further out from the steriods, how long did it take for you to feel normal? 

  • bestfriend05
    bestfriend05 Member Posts: 70
    edited March 2012

    Rohm, thanku for your quick reply...

    I have been following your posts and was sorry to hear u had to go for WBR after your partial radiation treatment..this cancer sucks..when do u have to go back for a follow up, they dont want to see mom for 6 months...and i find this waiting period really agonising..as i am sure u know..

    I wish u get a very positive result for your treatment and cancer keeps away from u from u for a very long long time..

    best wishes and loads of love..

    xx

  • Rohm
    Rohm Member Posts: 18
    edited March 2012

    bestfriend-

    First, thanks for the good wishes, I'll take 'em.  My onologists are pretty hopefully I'll get a rally from the WBR.  Fingers are all crossed!

    My follow MRI will be 8 weeks after my last radiation treatment and that seems like forever.  I can't imagine waiting six months.  My radiation oncologist did say that she'd scan earlier if I had any symptoms.  Maybe bringing up the pain at the craniotomy scar will push the scan forward for your mom...  Please know that you're doing a a great thing being an advocate for your mom!

  • jodimomoffour
    jodimomoffour Member Posts: 258
    edited March 2012

    Hey Rohm.  Not sure about how long and what the side effects of steroids are.  I didn't have any problems cutting down then quitting them.  I know this much.  I did not like them at all.  I have always had to force myself to eat.  Now your arm is not safe!!  My right leg is skinny like yours and extemely weak.  Tomorrow we are going up the coast.  I told Mark he had better hang on to me.  I am so scared of falling.  A broken bone is all I need!  My radiologist said I won't have a brain scan for another 8 weeks.  I do have a cat scan of my body April 6th.  I like the term scanxiety.  I will try not to think of it until the 5th.  Well, we don't have internet at the coast so I will check in Sunday.  I hope everyone has a fabulous weekend.  I plan on feeding the birds, eating a lot, and doing a lot of resting.  Hugs to all.

  • mauimom
    mauimom Member Posts: 53
    edited March 2012

    10/25 wbr down...hair is coming out in clumps already. Wasn't quite ready for that yet. But, waiting on the pet scan results from yesterday. Going I didn't light up anywhere besides my brains! So, are the steroids to blame for my leg weakness too? I figured I'd be getting pumped up, not weaker...weird. But, Jodi, I am right there with you on the sweets - my girlfriend bought me cupcakes yesterday - fancy ones! Things taste funny, but I'm all about sampling sugary stuff.

  • 1maximus
    1maximus Member Posts: 11
    edited March 2012

    started on cysplatin today, halaven was working for my liver lesions, but not on brain lesions,  any brain mets sisters with feed back on cysplatin,

  • jodimomoffour
    jodimomoffour Member Posts: 258
    edited March 2012

    Hi Mauimom.  I think everything tastes like it's been over peppered.  Plus, I have a constant burnt smell in my nose.  This weakness is supposed to go away in a month or so after radiation.  I just know those cupcakes are divine!  My niece made me a cake from scratch.  I could barely choke down dinner just thinking about it!  Have a sweet weekend with your girls.  Hugs.

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

    my radiologist told me the steroids would make me ravenous..

    not.

    I haven't lost an ounce but all i can seem to eat (or drink is soy milk and microwaved apples).  Anyhoo, i get to wean off the steroids.  hurray.

    Hoping everyone has a wonderful day.  I worked very hard Monday and early Tuesday and slept all yesterday afternoon with the help of an Ativan. (Why did i never take those before?)  it was heaven.

    Today is a work day.  It sure is nice to be home with my own stuff.

  • tcrs
    tcrs Member Posts: 6
    edited March 2012

    Well I had to put on a scarf today.  The hair loss is a distressing event.  I was having a problem with my right leg also like so many others.  Funny its the right leg so often.  It felt like it wanted to give way, but that has improved over the last 7 days.  Guess that is a good sign.  I have some numbness on lower inside right calf, but I think some of the sensation is coming back.  I hope so any way. I have had no pain at all whereas several months ago I was having aches and pains all over.  I thought I had  fibromyalgia.  The pains disappeared before the breast cancer recurrence was discovered.  I think this is bizarre. Number 11 of 15 WBR today.  Good reports to all.

  • jodimomoffour
    jodimomoffour Member Posts: 258
    edited March 2012

    OK  I have an idea.  Let's talk about who we really are.  As far as Im concerned this cancer BS is just that.  It is a blip on the radar.  I am so much more than these treatments.  I have a life that has nothing to do with creepy doctors and nuking my brain and body.  I want to know more about you and your love, likes, trials and tribulations.  I want to know about your kids, partners, in laws, out laws etc.  I have never liked doctors (weird profession) tests, meds, et al.  They bore me.  Let's talk about who we are.  One thing you don't know about me, I am a hospice volunteer.  Have been for about 7 years.  LIfe is stranger than fiction...Hugs.

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

    great idea jodi..

    I'll weigh in later.

  • bestfriend05
    bestfriend05 Member Posts: 70
    edited March 2012

    Hi Rohm,

    Thank u for your kind words..

    yes i suppose if this does continue I will ask mom to make an appointment..

    keeping my fingers crossed for u, pls keep us posted..

    love n hugs...

    xx

  • chainsawz
    chainsawz Member Posts: 113
    edited March 2012

    lore81. thoughts of strength and comfort to you :>

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

    Apple and Jodi I have a poor appetite for the first time in my life! Think its halaven on top of radiation thru abdomen. Anyway, DH brought home Kozy- Shack non- diet rice pudding. Mmmmmm it goes down really well.

    definitely has to be small amounts at a time.

    Gamma tomorrow, maybe the last.



    To maximus: haven't heard of chemo directed at brain. Has anyone else? I know xeloda and a few CAN get through. They said the hope is that halaven will stop the chest Mets from throwing the evil clones to the brain.

    Whatta life.

  • Mizreeder
    Mizreeder Member Posts: 1
    edited March 2012

    Jodimomoffour,

    Great idea! Let's not give this cancer more weight than it deserves. I'm an ER nurse with 2 little girls. Hospice is a real calling. You must be a very strong spirit to do hospice.

  • banjobanjo
    banjobanjo Member Posts: 187
    edited March 2012

    Jodimomoffour,

    Good idea!  I'm 59, married for 35 years.  I have two daughters; Eleanor who is 25 and works in England as a paralegal at the moment, and Olivia who is 22 and just finished her Masters in Politics and is looking for a related job (difficult times in England).

     I was a bi-lingual secretary and then did a degree and became a high school/college English teacher.  Worked in a sixth form college and then we moved to Germany after Eleanor was born - Stuart worked with Ford Motor Co. and they sent him to Germany to work with Ford of Europe.  This was fine by me as I already chosen to learn German at school.  The English Open University decided to open up in Europe and I was the first tutor/counsellor in Germany and loved teaching adults. Then we went to Holland for four years (absolutely lovely country to live in) and then back here.

     Stuart took early retirement and now works free-lance as a consultant for other car companies here in Germany.  I began quilting when I was 50 and it is now a passion.  I also read a lot, walk when fit enough, and love movies. We have a twelve year old border terrier who has kept us going through the past difficult year, the way that animals do.

    Well, there we are - hope it's not too long! 

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

    Right now: Brief view of gamma knife frame. Gotta love those sun spots. Liver spots? Who said liver spots? Some people!

    Absolutely painless after initial placement.

    Hurry up and wait, right?

  • 1maximus
    1maximus Member Posts: 11
    edited March 2012

    To  K-Lo

    You must be getting Gamma knife as we speak, Hope you get all those little suckers zapped and that they never come back,I just had gamma on march 5th for the second time, I think you had gamma a few times also, I was also on Halaven,but onc took me off even though it was working on liver lesions, and started me on cisplatin, he said it does cross the blood barrier.I hope so,. I also had a good run with Xeloda 36 weeks. good luck to-day and thank-you for answering my post.

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

    Well fug why isn't I on cisplatin? Help a sister out here, oncology!

    Yes 6:30 to 1:30. If I hadn't snuck in some chocolate and a drink I wudda fainted! I believe the fasting is for the early procedures. They knock you out for the frame and stick you in the MRI. Rest of the day fully alert.

    Gotta do the decadron wean. My favorite rads onc was there.

    Keep us all posted!

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