Flalady Update

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  • suegeyer
    suegeyer Member Posts: 14
    edited June 2009

    Hi Flalady,   Just wanted to let you know I am thinking of you and sending prayers, love, and hugs your way!!! 

    Sue

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  • FloridaLady
    FloridaLady Member Posts: 2,155
    edited June 2009

    My pain is back really horrible again.  It must be something to do with the heating and my shoulder.  I will stop the trial now.  I can't do this again.  I now need another treatment option.

    Flalady

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  • hollyann
    hollyann Member Posts: 2,992
    edited June 2009

    AWwwwhh...That sucks Flalady!......Great big gentle hugs to you today, and prayers for relief......

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  • Binney4
    Binney4 Member Posts: 8,609
    edited June 2009

    FlaLady, I'm heartbroken to hear this.Frown Praying for the right option, and soon.

    Be well!
    Binney

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  • TenderIsOurMight
    TenderIsOurMight Member Posts: 4,493
    edited June 2009

    Wow, so very upset for you, Flalady. It's likely the heat treatment involved in the trial may really excite those nerve endings. How to immediately dampen them down is the question and problem, yes?  Pain medicine helps, but I'm wondering if some topicals used in burn treatments may be good: a barrier maybe to the air whose flow past the lesions can cause pain?

    In case it's too painful to scroll back through the threads, and without wishing to look or be overbearing yet in response to your query about other treatments, here are some possibilities I mentioned through researching skin mets and bc.:

    a. mitomycin C and vinblastine have some success with skin mets from breast cancer. It's not a commonly used chemo duo, yet maybe your oncologist will have some insight on it for you.

    b.Aquacel-Ag silver dressing: a specially compounded skin cream/ointment with silver which is antibacterial.

    c.oral UFT + LV (tegafur 300 mg/m2/day + uracil for 28 days in a 1 to 4 molar solution plus leucovorin 90 mg/orally for 28 days, each 35 day cycle x 5) was found helpful in breast cancer skin mets.  

    d. A Rapamycin (mtor inhibitor pathway) alternative is high glutamine diet, limited arginine, leucine. Glutamine can be found as a supplement. Still your oncologist should be on board.

    All of these are in this thread. I'm sorry, there is nothing worse than pain. I hope you will get a pain management doctor on board very soon, as well as some ideas as to your arm from a burn specialist who deals with skin all the time.

    I don't know what else to say other than I will say special prayers for you tonight. Please let us know how you are when you are up to posting and I trust you will call your oncologist and be seen tomorrow. This is an urgent situation when you are in this much discomfort and partially treated chest wall. 

     Sending you support,

    Tender

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited June 2009

    I'm here to hug and offer support.  I hope you can find comfort soon.  Love, Deb

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  • trigeek
    trigeek Member Posts: 916
    edited June 2009

    FLA gal,  

    I have been on the iodine forum and there were incidents mentioned of the topical iodine therapy controlling skin cancer, from your posts I am sensing that your skin is sensitive and I am not sure how the iodine goes on.. iodine@yahoogroups.com -- is the group that I am monitoring.

    Maybe something to explore for the skin ones since the onc seem to be focusing on the other aspects ?

     XOXO

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  • anondenet
    anondenet Member Posts: 715
    edited June 2009

    Yes, dear one. good energy spirit on its way to Florida.

    xxxx

    anom

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  • FloridaLady
    FloridaLady Member Posts: 2,155
    edited June 2009

    trigeek,

    i do supplement iodine but this has a lot less value for me because I'm triple neg.  Iodine research is connected to hormone positive bc. My skin is open in a few places and swore..I really worried about putting a lot of things on it. I wanted to research today more but really sleep the day away.

    Hopefully I can do more tomorrow. Tender I will look into your info and thank you so much.

    Flalady

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  • TenderIsOurMight
    TenderIsOurMight Member Posts: 4,493
    edited July 2009

    Thinking of you tonight, my friend. Has your pain lessened any over the last day? I think of you all the time, hoping and praying you are getting some help and relief from this most stressful turn of events. Perhaps too without the heating your LE will improve some.

    Supportive thoughts winging their way south to FL, and hopes the sun shines soon too.

    Tender

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  • Estepp
    Estepp Member Posts: 6,416
    edited July 2009

    I too think of you all the time. I hope you have gotten my notes....

    I wish I was closer to you too... I would help... in some way.

    I hope your pain is less... I am truly sorry.. take all the pills you can for the pain...

    Praying for you friend....

    Laura

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  • Yazmin
    Yazmin Member Posts: 840
    edited July 2009

    Dear Flalady:

    You are so brave, I just cannot believe it. Thank you for keeping us informed through all this. I am pulling for the right treatment to be found for you very, very soon.

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  • TenderIsOurMight
    TenderIsOurMight Member Posts: 4,493
    edited July 2009

    Another day, another good wish for you.

    Tender

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  • konakat
    konakat Member Posts: 6,085
    edited July 2009

    Popped in today to see how you are Flalady.  I'm so sad the trial didn't work and caused you so much pain.  I wish, and wish, and wish I had something to help you.  I wish so much for something or someone to help you.  All I can do is send my love. 

    Elizabeth

    xoxooooooooo

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  • TenderIsOurMight
    TenderIsOurMight Member Posts: 4,493
    edited July 2009

    Thinking of you, Flalady. Hoping too your local oncologist will provide his wisdom and benfecence to you.

    Prayer whispers for you carried on the wind to Florda.

    Tender

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  • hollyann
    hollyann Member Posts: 2,992
    edited July 2009

    FloridaLady, thinking of you tonight and wishing you peaceful sleep and pleasant dreams.......

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  • althea
    althea Member Posts: 1,595
    edited July 2009

    flalady, I don't always post on this thread, but please know I pray for you to be victorious in this struggle to be free of illness and pain.  There could be no better way to celebrate independence day than for all of us to shine with vibrant health.  I hope you get a good night's rest and a holiday that you can enjoy. 

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  • TenderIsOurMight
    TenderIsOurMight Member Posts: 4,493
    edited July 2009

    Another Friday night, Flalady, and I've thought about you so often this week. I read up on a couple ideas to share, but have them in email form.

    Some exciting news coming out about Metformin as a counter drug to breast cancer resistance protein which is always a problem when you've had significant amounts of chemotherapy for breast cancer. Most excitingly, in addition to seemingly improving response to chemotherapy, Metformin is well tolerated, with wide safety profile. So I thought perhaps you might mention it to your oncologist when and if a new chemotherapy is selected. Going off trial with hopes of minimizing BCRP and maximizing outcome seems worth reviewing. I can always pm or so you some articles.

    Evening prayers being said for you, my friend. This is a lonely trail you walk, so come from time to time as you wish to share yourself and happenings with us and to feel our support for you, lovely lady.

    Tender

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  • Binney4
    Binney4 Member Posts: 8,609
    edited July 2009

    Also thinking of you and keeping you in my prayers, FlaLady. Hope the weekend is good to you!

    Gentle hugs,
    Binney

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  • cp418
    cp418 Member Posts: 7,079
    edited July 2009

    FlaLady - I just saw this clinical trial in news article in case you may find it hlepful - - located in FL.  Thinking of you and hope you find some comfort soon.  Hugs Joann

    http://news.prnewswire.com/DisplayReleaseContent.aspx?ACCT=104&STORY=/www/story/07-14-2009/0005059360&EDATE=

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  • hollyann
    hollyann Member Posts: 2,992
    edited July 2009

    FlaLady thinking of you and wishing you well......A little worried since you haven't posted in a while.....Hope you are doing fine.........

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  • Blundin2005
    Blundin2005 Member Posts: 1,167
    edited July 2009

    bump

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  • juliebb
    juliebb Member Posts: 140
    edited August 2009

    Prayers coming your way Flalady - from me! You are hero and an inspiration!!!!

    XO 

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