Calling all TNs

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  • Teka
    Teka Member Posts: 10,052
    edited August 2013

    laurajane,

    Your personal doctor who believed in your judgement, is a keeper.   I'll keep you in my thoughts.

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  • jenn3
    jenn3 Member Posts: 3,316
    edited October 2010

    Laurajane - I am so sorry to hear that the chemo has not worked.  When I was initially diagnosed I was told that there are those that are diagnosed and need surgery ASAP for very agressive cancers and those that can wait a few weeks.  I thought that I would be the one to wait - nope I had surgery two days later.  I'll pray that your surgical onc has the same idea and doesn't wait, but squeezes you in as an emergency - push for it. (((hugs))) and prayers headed your way. 

    dirk - welcome to the place that we all wish we didn't have to be - the support here is wonderful and the women (and men) are really full of information that the doctors don't always tell us.

    I went for a follow up today and was told I'm healed and whenever I'm ready for recon (DIEP) I'm good to go.  I've been putting it off because the thought of being "down" again is just too much right now.  It would be nice to have boobs again.  Guess I need to "Just do It".  I also have some lymphedema, which I had noticed and started taking care of, but hearing it from the dr made it real.  Ugh!!  It's not too bad, aches a little, but isn't painful.  Ahhhhh.....the joys of BC. 

    Ohhh - I almost forgot.  My hair got wind blown today - yep, my hair actually moved with the wind and got a little messed up!!!  I so need to update my picture, which I will try to get done before the end of the week.

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  • mitymuffin
    mitymuffin Member Posts: 337
    edited October 2010

    Oh LauraJane, this is so hard for you. If I'm not being intrusive by asking, have you done genetic testing? In other words, do you know your BRCA status?  I keep reading about research and tailored therapies being done at M.D. Anderson's and I wonder if a second opinion there would be an option for you. Or a second opinion at another big research hosptial. Of course you want surgery now ASAP, I did too, so I understand. 

    When they remove a tumor, I wonder if they keep a part of it so that more tests can be done on it later? This is such a fast evolving field (not fast enough for us of course.) I have a meeting with the surgeon who removed my tumor, back in April at Sloan Kettering, and I think I will ask him if they keep a piece for future testing (for protein expressions, heat sensitivity etc.)

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

    laurajane- http://www.tnbcfoundation.org  Also, No Surrender site has a researcher there with good info. Good luck; scary stuff to be facing. Deep breath, release, repeat.

    Photo below is of MacFry and his new friend JR (Johnny Reb) checking the books for historical accuracy. They met during his recent trip to Gettysburg Battlefield. (Next time he will bring home Billy Yank).

     

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  • Sugar77
    Sugar77 Member Posts: 2,138
    edited October 2010

    Laurajane - I think we must have both posted at the same time because I didn't see your post earlier. I'm so sorry you are going through this.  I'm praying you can get surgery right away -- please let that happen!! The No Surrender Website is very good. 

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  • dirikuwanita
    dirikuwanita Member Posts: 42
    edited October 2010

    gillyone: I hope so. The result wil be at 11 am. Indeed , my skin a little darker, but not bad, I feel smarting in my armpit and sometimes feel pain on my skin.

    MJB: Thanks. Onething entertain me is, the doct is quite handsome and very polite to every patient... wooohooo...

    kittycat: I hope you are getting better day by day

    laurajane: I'm so sorry. Cancer is F**k indeed, but don't be defeated.

    Jenn3: Can u explain me about ASAP? what is that?. I'm so exited to see your update picture, after make over , off course

    hhfheidi: cute picture...! 

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited February 2011
    dirikuwanita- well, it *IS* important to have a handsome doctor... :-)
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  • mitymuffin
    mitymuffin Member Posts: 337
    edited October 2010
    LauraJane, read Godsgirl's encouraging recent posts under the Not a Typical Triple-3. 
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  • LRM216
    LRM216 Member Posts: 2,115
    edited October 2010

    LauraJane:  I am so very sorry you have to go through this, I just thank God your doc/friend took the bull by the horns and got this noticed.  The advice you received about going over to the No Surrender site is excellent.  Go over there - start a new topic under the Triple neg thread, or the Edge's Cam site and title it something that will get Edge's attention immediately, i.e., Edge need help ASAP, or something to that effect.  He is wonderful and extremely learned - as this is what he does.  He is a fantastic researcher and is a part of that site.  He WILL give you loads of info specific to just you.  God luck, Godspeed.  You are in my prayers and thoughts.

    Linda

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  • riley702
    riley702 Member Posts: 1,600
    edited October 2010
    As Soon As Possible, dirikuwanita.
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  • Titan
    Titan Member Posts: 2,956
    edited October 2010

    Oh man Laura Jane..let's hope that they schedule that freaking surgery NOW..get that S*8hi*8t out of there..sorry to swear but dang it...they have let you go long enough...whatever..we are with you..

    And welcome to the new ladies in the TN club...glad to meet you! More people to support Laura Jane through this crap.

    Angelisa..good luck with your surgery....like I said above..get that junk out of there...I know that there are reasons to have chemo b-4 surgery...but honestly I think you all will feel better when it is cut out...just the feeling of not having the lump inside you anymore does wonders for your soul...

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  • Claire82
    Claire82 Member Posts: 684
    edited October 2010

    Just curious - How many of us had chemo first - then surgery?

    My BS wanted surgery immediately - I had an mx then 4 weeks later started chemo.

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  • riley702
    riley702 Member Posts: 1,600
    edited October 2010

    Chemo, then mastectomy, now starting rads.

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

    My onc and surgeon both prefered adjuvent to neoadjuvent in my case.

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  • Titan
    Titan Member Posts: 2,956
    edited October 2010

    I was diagnosed on a Wed., had my lumpectomy on Friday..good thing for me and my BS...he would have had to peel me off the wall if I had to wait any longer...I wanted him to cut the damn thing out in his office..right then..I hated that thing..it was right there..I could feel it and see it under my skin..dang I hated that thing...sorry I'm rambling..but this is bringing back bad memories.

    Heidi..aren't you watching your Patriots?  I hope you beat Miami..I don't like them anymore either because LeBron is there.

    I think I'm a little hateful tonight aren't I...sorry..this thing with Laura Jane is just pissing me off.

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited February 2011
    Titan- d*mn right I am! Didn't like the "Pink Parade" at halftime though. I think the Stage 4 gals have it right; everyone wants to cheer the "survivors"-- no one wants to hear about the ones that actually die from this disease. Too much of a downer for many. I just read their thread on this and couldn't agree more with these gals.
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  • Teka
    Teka Member Posts: 10,052
    edited August 2013

    Hi!

    Maybe the way to get public support is talking about survivors.   No gloom and doom.  Many people believe that stage 4 is the end of the line.   Why do I feel the need to tell everyone that I am not dying?

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  • laurajane
    laurajane Member Posts: 321
    edited October 2010

    I just can't get up the nerve to look at the Stage 4. I want to hang with you guys for a bit longer.

    The best thing that happened to me today was: 

    On a different note- I shared the whole canning experience with my daughter today and tonight. We just finished eating homemade eggplant parmesan. Let's see after the fabulous bottle of $80.00 wine we shared while we were canning the tomatoes, I figure the 7 quarts we ended up with were worth about $18.00 dollar a piece.  Nahh!  What's that commercial? Priceless! 

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  • Teka
    Teka Member Posts: 10,052
    edited February 2012

    laurajane,

    There should be no stage 1-4.   We should all be BC patients hanging out on one board.   

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  • retrievermom
    retrievermom Member Posts: 522
    edited February 2011

    Packing up to get out of town.  It's my DS's 21st birthday, and I've designed my trip to see him in NJ and my mom in Va.  I'm glad to have my new hair color; the old look screamed cancer to me (not anyone else).  I spray on straightener, pull sections as I blow dry, run goo thru it, and it kindof stands up.  Man, the curls are tight.

    Laurajane:  Don't go away from this group.  I love the wine story.  I like the focus on "best thing."  Having been to a funeral of a work colleague who died of a sudden heart attack last week, I want to count joys.

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  • kittycat
    kittycat Member Posts: 2,144
    edited October 2010

    Laurajane - I am so sorry to hear about your tumor growing!  UGHHH!!!  I HATE THIS DISEASE WITH EVERY BIT OF MY SOUL!!!!!  I hope they can get you in ASAP for surgery.  Push for this week!  When they found my 2nd set of lumps on an ultrasound on Friday, I was in surgery that following Tuesday (and again the next Tuesday after they dx me again with BC to get clear margins and lymph nodes)!  All of that in a week and a couple days.  It can be done!!! 

    Laurajane - Question....  what did you mean by 4 types of TNBC.  This has me scared.  I'm on Taxol, too.  I hope it's working for me.  The removed my tumors and got clear margins, but it is still scary!  I AM PRAYING HARD FOR YOU!!!!!!!!

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  • TiffanyF4
    TiffanyF4 Member Posts: 171
    edited October 2010
    Laurajane I am so sorry you are going through this again.  I am proud of you for sticking to your guns about knowing your body. We have to be our own advocate! Keep us posted.
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  • starling
    starling Member Posts: 76
    edited October 2010

    Laurajane - I am praying for you everyday! I am so sad you are going through this. There is so much in the news about new treatments and so much hope for all us TN's. {{{HUGS}}}. Please stay on this thread and keep us informed how you are doing.

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  • Jwatrlily
    Jwatrlily Member Posts: 211
    edited October 2010

    Laurajane, sending huge hugs and many prayers your way that God will replace your fear with a calm sense of peace and the knowledge that He is in charge.  I'm sorry this is such a hard road for you but you have already shown us you are strong and we will all help you keep a positive attitude.  I know it is soooo hard and that is understandable (I think we are all dealing with fear for each other that we've come to know and ourselves).  We will just lift you up in prayer.

    I see my surgeon this afternoon for another followup.  I'm fortunate and blessed to have her and she is taking such good care of me.  I did my breast check in the shower again and while I don't take total comfort in that, I found nothing.  However, my tumor that got me diagnosed was deep, back against the pectoral muscle practically, so, I never did feel it.  It was picked up on routine mammogram.  I'm one of those unfortunate ones who has never felt a tumor to know what they feel like.  Thankfully though mine was small, Stage I, node negative.  But, I've got all the other things like Grade 3 and Triple Negative to deal with.

    I checked out nosurrender that was mentioned here and it is a great place to go too and there is encouragement galore there for Trip. Neg's.

    Juanita  

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  • Luah
    Luah Member Posts: 1,541
    edited October 2010
    Laurajane:  I wish I could add something helpful to what all the others have said, but I'm drawing a complete blank.  Just want you to know that I'm thinking of you also, and sending good thoughts your way.  I admire your determination and I'm sure it will serve you well as you get through surgery and begin a new treatment plan that can kick your cancer's butt one and for all.
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  • JenC
    JenC Member Posts: 382
    edited October 2010

    laurajane - so sorry to hear your news but hopefully they will get you into surgery quickly and will be able to remove all the crappy cancer cells and you can move on to recovering.  Thoughts and prays are with your.  BIG HUGE ((((((HHHHHUUUUUGGGGSSSSS)))))))).l

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  • MBJ
    MBJ Member Posts: 4,352
    edited October 2010
    (((((((((Laurajane))))))))):  I haven't been on at all and I woke up and read all of these posts and I agree with everyone above.  Push for surgery ASAP, stay calm, think positive, Carboplatin is very effective for mets so it might be the one that works for you.  I will be so happy the day they announce that testing prior to strting chemo to ensure you have one that works is the standard of care here. You can order tests from a very expensive couple of dr's in the US and also from Germany but not too many dr's take it seriously.  You have an amazing spirit and it's going to be a hard fight but we are all here with you and helping you every step of the way.  I agree with not having different stages especially for TN's because it's always agressive and always scary, but that doesn't mean that it can't be beat.  Lovely story about canning tomatoes and drinking a nice bottle of wine!  Keep us posted on what's going on and let us know if there is anything else we can do.  Are there any Oncoplastic surgeons in your area or on your insurance plan?  It might give you a bit of an edge with your surgery.  I had a turmor very close and starting to grow towards the chest wall and my surgeon cut into the wall to addiitonally clear the margins, something a regular BS never considered.
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  • MonikaV
    MonikaV Member Posts: 201
    edited October 2010

    Laurajane: (((((( MANY HUGS)))))) Think positive ! I have a lady on my support group with the same experience as yours. She had surgery and is doing well. Don't be discouraged. We are here for you. Monika

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  • Swanny
    Swanny Member Posts: 147
    edited October 2010

    laurajane - so sorry to hear your news.   I think we are all scared to death most of the time - I know it is always in the back of my mind.  But I think we have to keep on fighting with whatever tools we have.  I am not a very religious person but I will pray for you and I plan on us being on this website together 10 years from now.  I know everyone will support you and if you need anything - don't hesitate to ask us.  Too bad we didn't all live in the same area where we could really help each other out.  Take care and {{{HUGS}}}}!

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  • Meece
    Meece Member Posts: 19,483
    edited October 2010

    LauraJane, prayers and hugs coming your way!

    I was very lucky.  From the time I showed my GP my lump until it was out was 3 weeks.  Then 3 weeks later I started chemo to get what might have been lurking, then when that was done they zapped me with rads.  I think they did it in that order to not have to deal with killing the tumor.  I really don't know, but I remember going in for the BX and the surgeon didn't like it at all at that time as he was taking the BX.  He must have suspected the evil TN agression.  I am glad my drs worked to get it out ASAP, and I pray that they will do the same for you LauraJane.

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