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Calling all TNs

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Comments

  • HeidiToo
    HeidiToo Member Posts: 965
    edited December 2011

    But eventually they work things out...

  • HeidiToo
    HeidiToo Member Posts: 965
    edited December 2011

    Sort of...

  • naan1004
    naan1004 Member Posts: 278
    edited December 2011

    Heidi, thanks for the laugh LOL

  • laurajane
    laurajane Member Posts: 305
    edited December 2011

    Hello all of you wonderful ladies. I got a sweet call today from one of our lovely sisters with a gentle reminder to post. I apologize for the delay. Man time flies when your having fun.

    The Halavan worked miracles for me for a short while about 5 weeks. It was wonderful seeing and feeling my cancer decrease. But hence, my FC over road it also as many of you know. I tried the Chinese practitioner but as he did help me with more positive thinking It is was not the cure I was looking for. I'm still getting acupuncture twice a week from a gal here in town. I'm no where near ready to go so still looking for options. Good news! I don't have brain mets. MRI results yesterday. Unexplained headaches I can deal with. Kind of scary feeling my FC come back so rapidly. My onc spoke with another specialist at Sloan  and he suggested a skin biopsy on my skin mets to see how I registered on the EgFR growth factor and I was strongly positive so I am starting a new drug to slow or stop that growth factor next week. Disadvantage is that it is not covered by my insurance because for TN's it is a non approved drug. I will be doing my own trial. There have been clinical trials with it for TN's but there was no prior testing done to see whether the TN's taking the trial were positive or not. Some TN's are not and some are kind of and a few like myself are off the charts high in this growth factor. So I will be trying to figure out a way to pay for it but if it works who cares. I told my onc their hospital needed landscaping so maybe a barter? LOL. Another gal on another thread is going to give me some advise as far as trying to have a fundraiser. There are so many alternative venues out there but they all take big bucks. I'm wishing you all the best. Thank-you for your well wishes and sweet messages. I will try and catch up later this evening. Oh! For the record I still plan on beating this. I've gone past the prognosis they gave me and I plan on being here for a long time.

  • laurajane
    laurajane Member Posts: 305
    edited December 2011

    P.S. I've missed you all. Hugs and kisses

  • Suze35
    Suze35 Member Posts: 559
    edited December 2011

    LJ - it is so good to hear from you! You sound great - and determined! Yay on the clear brain MRI, I know that must be a relief. I really hope this new treatment kicks cancer's ass and screw the cost! You'll find a way to do this. If there is anything I can do to help, you let me know. Hugs.

  • Suze35
    Suze35 Member Posts: 559
    edited December 2011

    LJ - could this be a potential trial for you? It isn't TOO far away, and looks at the EGFR aspect...



    http://clinicaltrials.gov/ct2/show/NCT01272141?term=Breast+cancer+and+triple+negative&recr=Open&no_unk=Y&rank=16



  • Luah
    Luah Member Posts: 626
    edited December 2011

    LJ: Thanks so much for posting, you are a breath of fresh air! Good news indeed on the MRI... it's great your docs are staying on top of things and trying new things. Here's hoping this latest treatment whacks the heck out of your FC. Bartering landscaping for treatment - LOL! 

  • Paintingmywaythru
    Paintingmywaythru Member Posts: 221
    edited December 2011

    LJ..Thank you so mcuh for posting. I do hope there is a way for you to do the trial and have the hospital absorb the cost....so wonderful to hear your positive and upbeat self. Love to you and to all the wonderful women here.

    I am in the process of packing...makes me crazy...don't really want to move but it is the right thing.... trying not to think too much.

    Susan sorry your trial failed but you are so informed and it souns as though you will have soem good options. Hope you will be feeling better soon.

    So happy to be able to have this place to post. Hugs to all.

  • riley702
    riley702 Member Posts: 575
    edited December 2011

    laurajane, so glad to hear from you! Love how upbeat you are.

    Heidi, I love your pics. Keep 'em coming.

    bak, I started taking 1000 mcg Biotin a day when my hair fell out. I think it did help it (and my nails) come back faster and thicker, so I've kept taking it and people are always commenting on how thick my hair is.

  • navymom
    navymom Member Posts: 842
    edited December 2011

    Hey there, LJ.  Welcome back!  We missed you!  About paying out of pocket for the next tx....Get on the company website and contact them.  Explain your circumstances and see what they can do to help you.  Most drug companies do have funds set up for situations like yours.  The worst they can say is NO.

    Love the photos, Heidi.

    Good Luck, Olive

    Navy

  • Druanne
    Druanne Member Posts: 74
    edited December 2011

    OH!!!! Now I know what TNS stands for!!! I have just been diagnosed and am still learning all the acronyms!!! Here is a picture of my boys.......They make me smile <3

    Photobucket"

  • Druanne
    Druanne Member Posts: 74
    edited December 2011

    awwww.......not really sure how to post pics in here :( Louie's face got cut off :(

  • HeidiToo
    HeidiToo Member Posts: 965
    edited December 2011

    Druanne- OMG--- I HAVE TWO BOSTONS ALSO! Brady & Gisele. We are Patriots fans. My avatar is of them at a Halloween Costume party we won.

    And here we are just vegging:

  • naan1004
    naan1004 Member Posts: 278
    edited December 2011

    Druanne, thanks they made me smile too, sorry to have u join our group, but welcome

  • HeidiToo
    HeidiToo Member Posts: 965
    edited December 2011

    Druanne- check this out; you'll love it!

    http://www.lifewithdogs.tv/2011/11/boston-terrier-mashup-sexy-and-i-know-it/

  • riley702
    riley702 Member Posts: 575
    edited December 2011

    Cute doggies, Druanne! Louie's face is still there, you just have to scroll sideways to see all of him.

  • TifJ
    TifJ Member Posts: 804
    edited December 2011

    So glad you posted Laurajane! Your positive attitude is inspiring and I hope with all my heart that something that will help you is right around the corner! Keep us updated on a possible fundraiser!!

  • christina1961
    christina1961 Member Posts: 450
    edited December 2011

    Druanne, Your babies are beautiful!  I love Boston terriers - had a stray Boston adopt me when I was nine years old.

     Heidi, The Boston video is hilarious!!  I like the fact it is a rescue video, too - it will raise awareness for rescued Bostons. 

    Laurajane, So good to hear from you!

  • mitymuffin
    mitymuffin Member Posts: 242
    edited December 2011

    LauraJane, oh I'm so happy to hear from you! You sound great and I'm sending you love and warm wishes. Sloan Kettering would be smart to take you up on your offer to landscape! They need you.

    I agree that contacting the drug company directly, or asking your doctor to do so, might be fruitful. If you get a fundraiser going, be sure to include a Paypal link. 

  • Druanne
    Druanne Member Posts: 74
    edited December 2011
    awwwwwwwwwwwwwwwwww LOVE your babies HeidiToo!!!!I just started a topic and named it "funny pet pictures".......we can put lots of pics of our fur babies in there!!! <3
  • naan1004
    naan1004 Member Posts: 278
    edited December 2011

    Heidi, cute video, now I want a dog!!

  • Druanne
    Druanne Member Posts: 74
    edited December 2011

    OMG!! Love the video! Just shared it on my facebook!! <3

  • naan1004
    naan1004 Member Posts: 278
    edited December 2011

    My hair has officially started to rain down, literally during my shower, man the tub looks like i got my hair cut in it.  No more waxing for me, hee hee

  • Suze35
    Suze35 Member Posts: 559
    edited December 2011

    All those doggie pictures...ooh they make my heart hurt, in a good way! I miss my Ryder-girl! I had two doxies, a black/tan and a tan. I'll have to figure out this picture thing tomorrow.



    naan - I actually wax now, because the hair is thin, but still there. It is nice to not worry about it so often :).

  • mccrimmon324
    mccrimmon324 Member Posts: 794
    edited December 2011

    LauraJane, so glad to hear from you. 

    Druanne & Heiditoo, your little guys are adorable.  We have 2 dogs, no children - they are spoiled rotten.  I have to post a pic of them and find my way over to the new thread.

    I'm back to having to shave my legs everyday, sort of nice I guess.  Wish I had more hair, Still just a strange colored buzz but it's growing. 

  • mccrimmon324
    mccrimmon324 Member Posts: 794
    edited December 2011

    This is a pic of Hoover's (left) last Birthday,  Daddy blinded the poor guy with the flash and my goofy Harley (right) is enjoying the last of his krimpets. 

  • sugar77
    sugar77 Member Posts: 1,328
    edited December 2011

    Here's my furry baby Brandie...

     

  • sugar77
    sugar77 Member Posts: 1,328
    edited December 2011

    This photo was taken in Oct. 2010 when Brandie joined our family in the Run for the Cure. He's a boy but will wear a pink bandana (he's secure in his masculinity...lol)

  • Lovelyface
    Lovelyface Member Posts: 563
    edited December 2011
    LJ, Oh how wonderful to hear from you.  I can totally understand how we can try this and that, but everything costs money and especially in this economy, it is difficult.  Well, I was thinking what about contacting Susan Komen organization?  We have walked for so many years and raised money and what was that for?  It was for "saving your life".  You are the reason.  Therefore, the time has come for them to give to you, even if they have all this global support, outreach and what not, to us, our lives are also important, each and everyone of us because we are mothers, wives, sisters and daughers and all of us are important.  They have rasied trillions of dollars over the years, I am sure someone there can help you.  Here is their support grant link, hope you can get somewhere with this. Let us know if we all can write letters to them.  Just write us the address and a little bit of your information, and we will all have our letters to them in a heartbeat, faxed to them.   http://ww5.komen.org/

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