Calling all TNs

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  • Fighter_34
    Fighter_34 Member Posts: 834
    edited December 2011

    Heidi: I feel the same way.

    Hubby said to me I think you are going to be okay. Me: Why you say that??? Him: You are shopping agian.

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited December 2011

    LJ does not appear to have been active on her personal and business facebook pages since the end of Nov. I have located a phone and email for her but, truthfully, I am very reluctant to intrude into her life.

    Hopefully, she is just being kept busy and will report in when able.

    I've got a raging headache at the moment and can't take anything (aspirin) for it since they are trying a new procedure on Monday to try and mitigate these almost daily occurrences (spinal injection). It appears I am one of the under 2% of people who suffer from cervicogenic headache. I've taken a Cellebrex and it's made me dizzy and nauseous.

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  • minxie
    minxie Member Posts: 484
    edited December 2011

    Anyone keeping up with the news out of the breast cancer conference in San Antonio? Sounds like a lot of hope, but only for er+. They're going back to saying zometa is GOOD for post-menopausal women over 40, but only the er+. I don't get it. Do they not even include er- women in any of these studies? Getting very frustrated.

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  • Fighter_34
    Fighter_34 Member Posts: 834
    edited December 2011

    Same thoughts Minxie^^^^^

    I heard the news flash across the TV this morning and I couldn't wait to read it only to be  DISAPPOINTED!

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  • mitymuffin
    mitymuffin Member Posts: 337
    edited December 2011

    Heidi, I feel the same way about intruding into LauraJane's life, since she is not posting here.  I do keep thinking about her. 

    Here is some good news about Metformin for us:  http://hormonenegative.blogspot.com/2011/12/diabetes-drug-metformin-prevents-spread.html  There is also a considerable thread about Metformin on the TNBC forum. 

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  • OliveO
    OliveO Member Posts: 15
    edited December 2011

    Hello to all TNS.  Dr. called me at work this week to let me know my tumor marker bloodwork is elevated.  Here we go again.  PET scan on Monday.  I was putting off any more testing this year and almost made it.  Feel a little beat up.  Unilateral done 6/09 with 6 rounds of chemo taxotere and cytoxan and 26 rads.  2010 pretty good & no PET scans.  This year PET scan in february lumpectomy in March (couldnt find tumor) another lumpectomy in June & did get tumor. PET scan in  July and now ta da another PET scan.   Argh!!!!!!!!! my question is when does it get easier?  Hubby is distraught, he is my rock, so what can I do for him? What can I do for me?  Well, this is the best place for me to vent.  Keep up the fight.

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  • Luah
    Luah Member Posts: 1,541
    edited December 2011

    It sounded like Laurajane was looking into possible alternative options in Mexico and NM, so perhaps she is away. Let's hope to hear from her soon, and in the meantime, not intrude.

    OliveO: Sorry for all you're going through, no wonder you're feeling a little beat up. Try not to get ahead of yourself though, tumour markers aren't always accurate and reliable indicators. Fingers crossed for a clear PET on Monday. I know the waiting must be awful - can you and hubby find some fun distraction for the weekend?

    As for San Antonio, yes I'm frsutrated too. I read about the 2 drugs they're calling the biggest breakthrough since herceptin and once again, they're not for TNs. Damn.  

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  • ksmatthews
    ksmatthews Member Posts: 812
    edited December 2011

    My MO told me tumor markers are not at all accurate for bc.  Who knows?? Seems like we all get different info and advice.

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited December 2011

    Proof that cats are smarter than dogs (they can *read*):

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited December 2011

    Unfortunately, they sometimes lack judgement...

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited December 2011

    But eventually they work things out...

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited December 2011

    Sort of...

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  • naan1004
    naan1004 Member Posts: 520
    edited December 2011

    Heidi, thanks for the laugh LOL

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  • laurajane
    laurajane Member Posts: 321
    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.

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  • laurajane
    laurajane Member Posts: 321
    edited December 2011

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

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  • Suze35
    Suze35 Member Posts: 1,045
    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.

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  • Suze35
    Suze35 Member Posts: 1,045
    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



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  • Luah
    Luah Member Posts: 1,541
    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! 

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  • Paintingmywaythru
    Paintingmywaythru Member Posts: 317
    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.

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  • riley702
    riley702 Member Posts: 1,600
    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.

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  • NavyMom
    NavyMom Member Posts: 1,099
    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

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  • Druanne
    Druanne Member Posts: 295
    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"

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  • Druanne
    Druanne Member Posts: 295
    edited December 2011

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

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  • Anonymous
    Anonymous Member Posts: 1,376
    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:

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  • naan1004
    naan1004 Member Posts: 520
    edited December 2011

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

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  • Anonymous
    Anonymous Member Posts: 1,376
    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/

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  • riley702
    riley702 Member Posts: 1,600
    edited December 2011

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

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  • TifJ
    TifJ Member Posts: 1,568
    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!!

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  • christina1961
    christina1961 Member Posts: 736
    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!

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  • mitymuffin
    mitymuffin Member Posts: 337
    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. 

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