Brain Mets Sisters

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited January 2016

    Joining the exclusive, but growing group of brain only meters. Body scans clear!!

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  • Hernie
    Hernie Member Posts: 1,016
    edited November 2016

    Awesome! High five!!!

    We are the coolest…


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  • agness
    agness Member Posts: 576
    edited January 2016

    yeah

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  • Goodie16
    Goodie16 Member Posts: 446
    edited January 2016

    Great news Bad!!! So happy for you to be joining with us :)

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  • gciriani
    gciriani Member Posts: 218
    edited January 2016

    Agness/Ann,

    Thanks for the further links. The article from 2011 in the journal Cancer, discusses Boswellia only as a substitute for dexamethasone, to prevent the inflammation and swelling of the metastases; instead the article from 2006 in the journal of Neurooncology, purports that Bowellia would be effective to treat cancer metastases. They are two very different things. I don't believe that the reason nobody else has found an anti-cancer effect is because there is no money to be made: there are several natural substances that are being studied for their interaction with cancer for which similarly there would not be much money to be made; but one can find several articles about them because the same anti-cancer effects have been replicated in more than one-study.

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  • agness
    agness Member Posts: 576
    edited January 2016

    Docs stopped studying natural progesterone and were instead studying synthetics as if they were the same in the body, which they are not. This was to do with fibroids and infertility, I have 5 years under my belt in reproductive endocrinology before all this cancer stuff came up for me-- and two children with no ART to boot. I've just seen a lot, talked to a lot of doctors, and know that if the pharmaceutical industry can't patent a medication it isn't going to be funded for study.

    The NCI was trying to address this by funding natural medicine, complementary therapies, and immunotherapy but their budget was cut this year and we will see if Obama's initiative changes that.


    Time Is Right for Obama's Ambitious Cancer 'Moonshot,' Experts Say

    http://www.nbcnews.com/health/cancer/time-right-ob...

    "Last year, Vice President Biden said that with a new moonshot, America can cure cancer. Last month, he worked with this Congress to give scientists at the National Institutes of Health the strongest resources they've had in over a decade," Obama said. "Tonight, I'm announcing a new national effort to get it done."

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  • Lauralind5
    Lauralind5 Member Posts: 220
    edited January 2016

    I'm brain mets only TBNC

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  • Lauralind5
    Lauralind5 Member Posts: 220
    edited January 2016

    Bad ! Welcome to the unicorn club lol

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  • Hernie
    Hernie Member Posts: 1,016
    edited November 2016

    image

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  • Hernie
    Hernie Member Posts: 1,016
    edited November 2016

    Lauralind, sending you best wishes for your first carboplatin today! Good luck, our special unicorn!

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  • Lauralind5
    Lauralind5 Member Posts: 220
    edited January 2016

    Split bean I love it !  I did ok today. I'm cautiously optimistic that I'll do ok at least for a while. 

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  • Hernie
    Hernie Member Posts: 1,016
    edited November 2016

    Lauralind, that is so good to hear. How are you feeling today?

    Bad and Milo, how are you coming along?

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  • Hernie
    Hernie Member Posts: 1,016
    edited November 2016

    For all my squirrely sisters...

    image

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited January 2016

    I can already tell the "Unicorn Club" is going to be the coolest club I never wanted to be part of!

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited January 2016

    I'm starting a Phase 2 abemaciclib trial today. I'll take one cycle before surgery next week and then continue after. The hardest part of this whole thing has been having to report back to the Clinical Rsearch Unit after ringing the bell and skipping out of there less than 7 months before (I had done a Kadcyla trial for early stage). I told the nurses last week "you are all lovely...but I was really hoping never to see any of you again."

    Hope the Carbo continues to treat you well, Laura

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  • Lauralind5
    Lauralind5 Member Posts: 220
    edited January 2016

    Well but one day of feeling a little better it's gone. I feel like crap today I was nauseated this morning and I'm back to being pretty weak.  I did go out with my mother and it was all I could do to get home so I could crawl back in bed.   Not happy. But I'm wondering I got a bunch of fluids yesterday with chemo could I have been a bit dehydrated?  I wonder As I lie here in bed and I haven't had any water today and they cautioned me to drink a lot of water the first day or two after carbo. 

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  • leftfootforward
    leftfootforward Member Posts: 1,726
    edited January 2016

    Lauralind5- I hope you feel better soon. Fluids are good. If you don't feel like drinking maybe try a popsicle or two. I found I could often suck on those without getting sick. Best wishes


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  • agness
    agness Member Posts: 576
    edited January 2016

    Carboplatin depletes the body of magnesium. Did they ever check your magnesium levels before they started? Mine was crazy low andit took over a year of hard work to restore it.

    Make them do a baseline next blood draw. RBC magnesium (has to be sent out) is more definitive but if your serum (easily checked by any lab) is low your RBC will be low too.

    Carbo passes through the body pretty quickly. It has a short half life if I'm remembering right.

    My joke with carbo was that I was peeing platinum -- as your kidneys process the excess.

    Natural Calm magnesium, 2 tsp in a liter of water sipped throughout the day and epsom salt foot baths are great and easy ways to replenish your magnesium levels. Coconut oil helps too.

    Ann

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  • Hernie
    Hernie Member Posts: 1,016
    edited November 2016

    Lauralind, we are here for you.

    image

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  • Hernie
    Hernie Member Posts: 1,016
    edited November 2016

    Bad, when will you join the coconut club?

    Don't worry, they put it back when they are done

    image

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  • Milo
    Milo Member Posts: 27
    edited January 2016

    I have had 6 whole brain radiation treatments so far. On mom I received a call from a neurosurgeon who received me as a referral, but my main radiologist never told me he was making a referral on my brain mets. On tues, I handed in my FLMA form for signature and they said I could pick it up at the end of the week. Today, no one knew where my form was, so I can not give it to my employer on time. On Wed, I was informed I was to meet with a radiologist doc (never met her before). This new radiologist doc spoke to me (at my appointment at the nursing deal). Overall the service is subpar. After some research I am not sure I am on the correct path and I couldn't get any answers to why I am not receiving gamma knife vs won't. I also couldn't even get a sleeping pill prescription called into my pharmacy. I have a brief appt with my main radiologist doc (only met him once - nice guy but not plugged into my case) on 1/18 Mon before my next won't. This afternoon, i left voice mail message at my main oncologist for other referrals. The convenience of the radiologist oncologist office is the only plus for the practice. I need to find an aggressive well organized practice to handle my 13+ brain tumors. It seems like gamma knife is still an option. I hate to always have to argue for the best care possible - I am the patient - good grie

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  • Hernie
    Hernie Member Posts: 1,016
    edited November 2016

    Milo, go get 'em! You need a good RO to clean your brain. More power to you.

    image

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  • spicypetunia
    spicypetunia Member Posts: 83
    edited January 2016

    sending best wishes to all for good news, increased comfort, and exceptional responses!

    Split-bean -- I love your pics! thanks for posting :)

    Agness -- thank you!! can't stop thanking you for all of the insanely helpful information you make available. thank you!

    tgif - hanging-in & trying to remember to breathe... a lot. ;) hoping for the best possible weekend for all of us!

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  • Hernie
    Hernie Member Posts: 1,016
    edited November 2016

    Petunia, welcome to the thread! How are you?

    image

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited January 2016

    Well, Agness has pushed me to explore the coconut oil club. Going to try making a thing of fat bombs tonight

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  • Hernie
    Hernie Member Posts: 1,016
    edited November 2016

    Think before you act. Always. There are no secrets in science.

    https://www.sciencebasedmedicine.org/coconut-oil/


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  • Anonymous
    Anonymous Member Posts: 1,376
    edited January 2016

    Mercola and Oz in one article? That's a quack bomb right there. I think I will make up my mind on the merits of coconut oil after I see how the fat bombs actually taste. Until then, I have no more energy tonight for reading about nutritional theories and wondering what I did wrong to get myself into this mess.

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  • spicypetunia
    spicypetunia Member Posts: 83
    edited January 2016

    thanks for asking Split-bean - can't complain, things're alright, which makes me nervous. ;) sweating scans on 1/25, but visualizing only good things. I've clumsier fingers recently, but blaming cold hands (mid-30s so unlikely age-related). hoping for all good reports.

    'funny' tidbit: had a frustrating chat w/ MO. I don't see this one regularly but she's smart, matter-of-fact & at times, accommodating. I need that once in a while. WARNING - survival stat below. to me, they're mostly worthless. they don't factor-in advances in meds & rads & I'm often in the "highly unlikely" pool w/ this disease. I only value the 'good' stats. :D

    so bad it's almost funny.... MO's more scientist & doesn't see many patients... it often shows. discussing possibility of brain progression: MO: 'latest #s are 2 yrs. well, a median of 2yrs.' I'm cautiously excited -- 2yrs to progression post-treatment her2+ brain mets sounded really 'good'. I wrote it down, repeated it back & asked the source. she'd get it to me....

    wrapping up, I have a thought & my stomach turns. me: 'doc, did you mean post-tx median 2yrs pfs or os?' MO: 'huh? yeah, overall. oh. now I see why you were saying... well, the numbers can be totally wrong, you know that. [pause] sorry about that.' she'd been referring to overall survival when we were talking about progression-free survival. good grief.

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  • spicypetunia
    spicypetunia Member Posts: 83
    edited January 2016

    Bad... you. didn't. do. anything. to. get. yourself. in. this. mess. you stop that nonsense right this minute. ;)

    seriously though, please know it's not your fault. not nice to tease/torture yourself w/ that.

    now go munch on a fat bomb. :D (apologies!! totally joking & a poor attempt at humor)

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  • Hernie
    Hernie Member Posts: 1,016
    edited June 2016

    Quack bomb! LOL Bad you slay me. Wait a sec, it's not you killing me, it's....oh never mind....

    Petunia is right, don't blame yourself. None of us did anything wrong to get here.

    image

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