Calling all TNs

15675685705725731198

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  • inmate4232010
    inmate4232010 Member Posts: 310
    edited August 2012

    cocker....now that's a lap dog!  I want one.......can you talk to my hubby for me??

    Born......That just made my heart a little lighter.  Thank you for that.  Especially today.  I think I could have ripped the head off any slow moving living thing today.  Slow moving only because I'm so dragass.  God help me and those around me within arms length.

    Luv.....It is a bit mind boggling isn't it?  Did you also check out the vaccine trial.  I believe it's heading into phase 2 right now.  I thought I saw they were doing it in Chicago as well as Seattle, but if not you can always stay here.  As a matter of fact if you end up looking at a trial in this area and it fits your needs, please don't hesitate to tell me your move in date and I will put fresh sheets on the bed and flowers on the nightstand.

    Oh Mags.......I'm sorry that sucks.  You can get it bilaterally.  Seriously?  Ugh.....this cancer fucking onion just has tears and surprises with each layer.  

    Oh and have I mentioned I've turned into some kind of O'douls swilling potty mouthed longshoreman.  I could embarass the paint off of a brothel with my language right now.  I must say some of the looks I've gotten have made me laugh.  I will take the chuckles wherever and whenever I can get them these days.

    Again ladies, I would seriously be in the loonie bin if it were not for you all.  I will now go try to medicate my way closer to sanity.  Wish me luck!

    Has anyone heard from Minxie? 

  • inmate4232010
    inmate4232010 Member Posts: 310
    edited August 2012

    oh lory......please take care of yourself over there.

  • BernieEllen
    BernieEllen Member Posts: 2,445
    edited August 2012

    A Scotsman, an Englishman and an Irishman want to get into the Olympics but they haven't got tickets. The Scotsman picks up a manhole-cover, tucks it under his arm and walks to the gate. "McTavish, Scotland" he says, "Discus", and in he walks. The Englishman picks up a length of scaffolding and slings it over his shoulder. "Waddington-Smythe, England," he says, "Pole vault," and in he walks. The Irishman looks around, picks up a roll of barbed wire and tucks it under his arm. "O'Malley, Ireland," he says, "Fencing."

  • Lovelyface
    Lovelyface Member Posts: 674
    edited August 2012

    Hello everyone!  I have missed reading so many wonderful posts - all because of my eyes.  I have a hard time reading, got a new pair of glasses, find out that it is good for reading only (on paper), even though I had told the optometrist that I want something to help me read from the computer screen.  The Retina Specialist recommends surgery for my eye condition, called a "macula pucker", a thin layer formed on top of the Retina making my vision distorted. Going for a second opinion on Friday.  I am just so sick of diagnosis's and doctors.  Anyway, ladies from the posts, I gather that we have lost 3 sisters.  My heart just breaks at the news of beccad's passing, my goodness.  I am wondering who the other two are.  I am sorry laides, I am not able to read all the prior posts, too much strain on my eyes.  I always thought that Beccad is a wonderful avatar name, and I will try to go and check my PM's with her.  I am sure we had spoken via PM a few times.  I had no idea that she was not feeling well and that this ugly horrible disease would take her life.

    Luv - I am so very sorry to hear of your scan results.  Like someone said, there is a huge range of chemo's to choose from.

    We are all on our own journies, each one's is unique to themselves, their destiny.

    While I make a decision whether to have a surgery in my eye, one of you will be making a decision as to which chemo would be better for you.

    God bless everyone today!  Love, love and love to you all.

  • Fighter_34
    Fighter_34 Member Posts: 834
    edited August 2012

    Can I join in on the hug?? Enough is enough!!! Inmate keep pushing my sister keep pushing.

    CS-thinking of you and your daughter Mandy. Things will work out and I so glad she is following up on this.

    As for me I am dealing with the heat and trying to enjoy the rest of the summer. I just need a vacation this whole summer has been all work and no play. I am trying to rebuild my leave again from multiple Dr. appts. Frown

  • kathyrnn
    kathyrnn Member Posts: 393
    edited August 2012

    Geez, I'm busy for one day and I come back to find out I missed Porn Day!



    Spica - that picture is priceless! The swelling under your armpit made it even better. After I composed myself and stopped laughing my thought was that the caption should be: I'm calling 1-800- Lawyer! I went in for a mastectomy and got a penile implant instead!!!



    Inmate - we had a thunderstorm this morning--hope that was shock waves from you yelling for joy.



    Mags - LE isn't a minor thing, it must be a 24/7 kick in the ass from FC. I'd be doing more venting than that!



    Born - ride that roller coaster! Congrats.



    Lory - hoping for some rain for your area.



    Lovely - hoping surgery will solve the problem



    LuvR - waiting to hear what they had to offer.



    Got to spend the day at the beach with friends yesterday. ( we usually camp down there for a week, but I'm not comfortable leaving Mom for long periods). It was a great day and we even got to provide our fellow beach goers with some comedic relief. It is a rock beach, and only has sand at low tide. Close to shore is rocks and a steep incline. We forgot about this little problem and went in to swim close to high tide. When we tried to get out it became a comedy show. Every time we tried to stand up either the rocks would slide out under our feet, or if we did manage to stand up a wave would kick us in the ass and knock us over. Of course I was laughing my ass off, but it went on so long that one of the woman who had been laughing at the spectacle initially, sent her husband down to help us get out. It must have been quite a show because we got applause when we finally made it out. We've been going there for years, you'd think we'd have been smart enough to remember that high tide was a problem!

  • the5owens
    the5owens Member Posts: 99
    edited August 2012

    Ok help me!! Went to see surgeon yesterday. She says that I will probably only need a lumpectomy. I need opinions from others with triple negative bc. Tell me your thoughts on lumpectomy vs mastectomy. I am IDC grade 3 and am on 38 years old. She doesn't think the cancer has spread won't know for sure until all tests are done...MRI, chest xray, pet scan, lab work, genetic testing. Any advice...I want to make the best decision.

  • kathyrnn
    kathyrnn Member Posts: 393
    edited August 2012

    5owens - Luv will be the best at giving you the stats, but from what I remember the results for both LX and MX are very similar when it comes to survival rates. It comes down to a personal choice of what you are comfortable with. My surgeon recommended LX, so I accepted her advice. The ladies who had MX's will be along soon to give you their advice.

  • borntosurvive
    borntosurvive Member Posts: 213
    edited August 2012
    the5owens:  Mine was 3.2cms and level 3 IDC triple negative.  I was 33 @ diagnosis and 34 now.  I opted for the double mastectomy because I knew this was the right decision for me.  I wanted to do whatever I could to try and limit the risk of it coming back.  I knew if I left a breast that I'd worry with every little twinge, pain or bump.  I never wanted to have to make the decision again about what to do and I thought it would give me a good shot.  My surgeon said he'd get all mine with a lumpectomy but the double mx was my choice.  I felt I owed it to my kids to try everything I could.  At the end of the day, it's anyone's guess about what could or will happen so I tried to control what I could in the moment. Just know that whatever you decide needs to be right for you - and will be.  It's a very tough call.  I just didn't want to look back (if it were to recurre) and said "I should have......I wish I had of".  Good luck in the decision and sorry that you even have to make that decision.
  • NavyMom
    NavyMom Member Posts: 1,099
    edited August 2012

    5Owens..My story is much like borntosurvives..  I took a day or two to think things over.  I literally went down a pro and con list for each option.  I had a wonderful BS that supported whatever decision i made.  BMX is a big operation for sure, but it is doable.  It was what I was confortable with.   And to add...Make sure YOU decide what you want and need.  Keep DH and other family and friends out of it.  It is not their body or their life.  You are in charge here, even when you feel things are out of control.  At the time of DX I was told that survival rates for each option were the same.  So I did what I could live with(hopefully)

    Good luck and let us know how you are doing.

    A BIG hello to everyone!  I have been trying to read along, just haven't been in the right mindset to post much.  I am sorry for not sending hugs earlier....just in a funk....I hate this fucking disease.

  • whaevah
    whaevah Member Posts: 354
    edited August 2012

    the5owens I opted for a lumpectomy based on my BS and PS's advise.

    The only issue with lumpectomy is acheiving clean margins, and that cannot be known until after pathology. If margins are positive or dirty (my case) the next route will be reexcision, (not advisible in my situation) MX, or a wait and see with chemo and rads. Many have had dirty/pos margins and have fared well .

     Each case is different and only YOU can decide what you are comfortable with.

    I will not know until my treatment is complete. Just another worry really.

    Good luck with what ever you choose. 

    Hi to everyone Smile

  • Babs37
    Babs37 Member Posts: 455
    edited August 2012

    the5owens- I had 3 lumps in my right breast. Even with that in mind my onc wanted me to have a LX. I spent all my time on chemo trying to figure out what I wanted: LX or MX. I was going crazy trying to decide what I was comfortable with. One day it was LX and the other I wanted MX. First,when I was just diagnosed I was ready for a BMX!!! I wanted everything out! But my onc talked me down and said we would see after chemo. After chemo there was a bit of cancer left inside. So because of my not so big boob, trying to cut away all the sites of the 3 lumps and get clean margins, my onc thought there would not be enough breast left. So he suggested to go for a right MX..I was comfortable with the idea of the MX. It gave me peace of mind when the decision was MX.

     I sooo understand what you are going through with making that decision. We all do!!! In the end, it's your decision to take. Do what feels right for you and go for it. Best of luck and big hugs. xx

  • LuvRVing
    LuvRVing Member Posts: 4,516
    edited August 2012

    I think the statistics are relatively the same for LX with rads vs MX.  As for BMX, well, that is a personal decision.  I had a LX the first time, then when it recurred I went with the BMX thinking I was going to prevent another recurrence.  But that didn't work out for me.  I think if you are BRCA 1/2 positive, then going with the BMX is an easier decision.  Bottom line - whichever gives the most peace of mind is the one that's right for you, regardless of any statistics.  I think I said this before...it either recurs or it doesn't.  I have defied every odd with my BC, in a negative way.  So statistics are just one small part of the decision.

    Inmate - hope you are having a better day today!  Weren't you due for a scan?

    I had my visit with my local MO today and it was kind of a "non-event" as she is deferring decisions to Dr. Chen at Dana Farber in Boston.  So I have an appointment there on Friday at 3 p.m.  She did ask me what treatment I would prefer, and I said I'd like to do the following clinical trial:

    http://www.dana-farber.org/research/clinical-trials/clinical-trial.aspx?tid=2410

    There are some 40 trials underway using MK-2206 including at Dana Farber and MD Anderson.  That gives me reason to think that this drug is showing some significant promise.

    I asked her what she'd like to see me do if I didn't enter a trial and she said either carboplatin with Gemzar or Ixempra alone.  I am going to check out the Stage IV discussions on these options to see how well they are being tolerated.  I have an idea that Ixempra is an ass-kicker, which would be OK if it also kicks cancer's ass!

    I also have to consider that we are going to Hawaii in October, and I have no plans to cancel or postpone that trip.  So any clinical trial will have to be flexible enough to work with my two weeks away, or I'll skip a clinical trial this time around, go with the carboplatin/gemzar routine and take a chemo holiday for Hawaii, get scanned when we return and hope for the best.

  • Cocker_Spaniel
    Cocker_Spaniel Member Posts: 1,204
    edited August 2012

    Inmate your hubby would never know you had this one you could just put it in your pocket

  • LuvRVing
    LuvRVing Member Posts: 4,516
    edited August 2012

    OMG - that is one adorable little dog!!!  I want one!!!

    Kathy - your beach story is too funny!  I can picture it and see you laughing hysterically!

  • Anonymous
    Anonymous Member Posts: 1,376
    edited August 2012

    Ohh My Cocker- that is what my DIL's new puppy looks like!!! she is adorable!

  • Titan
    Titan Member Posts: 2,956
    edited August 2012

    5owens...I had an lx..and I'm doing fine....of course...there is this little niggling voice in my head saying that maybe I should have had a MX..I dunno..it's a tough choice...I was diagnosed on a Weds...had the lx 2 days later...they got me in that quickly..would not have been able to do that with a MX...I had it on a Friday and was back to work on Monday...stupid..maybe..but that is what I did...I had mammos every 6 mos for a couple of years..now once a year...the thing with Tn..is that is often doesn't come back in the breast but moves on to other parts of the body...I guess I don't worry about my breast so much as other things...

    Ah well..it is your choice...but either way..you will be glad to have the sucker OUT OF THERE...that gives you a little peace of mind...it sure did me.

  • OBXK
    OBXK Member Posts: 791
    edited August 2012

    My, you ladies are chatty!

    On my iPod, makes it hard to remember what everyone wrote.



    My memory is so bad, I can't even remember if I put conditioner on, in the shower.



    Annie - I hope Mandy gets good news, so that you can all rest easy.



    Inmate - wishing you all the best!



    Hugs all around!



    I am happy to be home!!!

  • ksmatthews
    ksmatthews Member Posts: 812
    edited August 2012

    bornto survive    so happy for your great news!

  • the5owens
    the5owens Member Posts: 99
    edited August 2012

    Thanks everyone!! I really trust my surgeon so after all test results are back and after speaking with her I will make my decision. It helps hearing all of your personal experiences has helped me too!! Thanks for always listening and guiding!!

  • Luah
    Luah Member Posts: 1,541
    edited August 2012

    the5owens: Here is an interesting study, albeit with limitations (it is retrospective) that suggests Lx with rads may have better outcomes in TN than Mx (without rads). http://jco.ascopubs.org/content/early/2011/06/29/JCO.2010.33.4714.abstract?elq=4fb8490e0ed5444ab6225f74da463b8f  

    On the other hand, there is a recent thread on this board with a study showing 3X risk of local recurrence with Lx over Mx - though the actual risk level is not stated (it could be quite low, who knows?). You might want to do a search to locate that discussion here.

    There is also this discussion from the Ask the Experts section of BCO.org, so you can hear the medical point of view:  http://www.breastcancer.org/symptoms/diagnosis/ask_expert/2008_07/#q20

    One thing I would like to clarify is that local recurrence is possible even with Mx... there is some tissue that remains... though it is uncommon. Unfortunately this disease brings no guarantees. 

    In the end your surgical choice is a personal decision. For me (and my BS who I loved and trusted), Mx seemed like an overkill intervention. If the path report showed dirty margins, I'd opt for a Mx then. I did have a close 1 mm margin but that was against the chest wall and a Mx wouldn't have made any difference anyway. I did radiation of course. I didn't know my TN status until path report, and at that point, I was more keen to get on with chemo because, as my surgeon said, no one dies of cancer in the breast. And Titan is right - TN is more likely than ER+ tumours to recur somewhere distant.

    That was my logic, but this decision can also be emotionally charged, and you need to listen to your heart as well as your head.   

  • inmate4232010
    inmate4232010 Member Posts: 310
    edited August 2012

    Kathrynn....welcome back.  girl, you crack me up.

    the 5owens.....i, like Luv had both done.  and well, it came back.  Looking back, I think I would have done it the same way.  It appears with TN anything is possible.  I should say the first recurrence was in the same breast so taking them both would not have mattered.

    cocker.....what's the word with Mandy?

    well ladies, the results are back.  No, it is not what we had hoped for, but I must admit I was not at all surprised.  In fact I took the news very calmly.  Must have been the ativan.  The little bugger has set up home just where I thought.  I have a tumor in the center of my chest that extends into my right lung.  Swollen gland (?) in my very puffy right armpit and something about a tumor on my adrenal glands.  That one I had never even heard of.  All of this makes my very fine Dr. nervous and concerned.  I will go see him next week and we will decide if this chemo is working or we will move on to another option, my 12th Abraxane.  The trial is still out there s well.  I'll keep you all posted.  Cancer fucking sucks!

    Luv..... am currently on Ixempra and yes, it is a real ass-kicker.  Doable, but not at all fun.  Keep us updated on your next steps. 

  • journey4life
    journey4life Member Posts: 517
    edited August 2012

    Inmate - Cancer does suck! Your recent test results are distressing but let's hope they find the right cocktail for you! Sending you strength and attitude - kick cancer's ass!

  • inmate4232010
    inmate4232010 Member Posts: 310
    edited August 2012

    Karen.....how did camping and the MIL end up treating you?

  • LuvRVing
    LuvRVing Member Posts: 4,516
    edited August 2012

    (((Inmate))) - so sorry you got such sucky news. You've put up such a good fight and the FC just doesn't play fair!  When you're ready, and if you have the energy for additional discussion threads, please join us over on the Metastatic/Stage IV forum. I think there is a thread somewhere dedicated to Ixempra.  You've certainly got the right attitude along with courage, and strength. 

    CS or anyone else - do you know what kind of dog is in that picture? I'm obsessed and I want one just like it. I've been talking about getting a dog for quite a while. And I think the time will be right after we get back from our trip in October. I love small, cuddly dogs and that little girl puppy is irresistable.

  • inmate4232010
    inmate4232010 Member Posts: 310
    edited August 2012

    cocker.....it may have worked.  my husband did think that was one of the cutest puppies he has seen in a long time.

  • Luah
    Luah Member Posts: 1,541
    edited August 2012

    Crap, inmate, so wish it had been better news. You and your docs are so good at staying on top of things... I'm hopeful you can get ahead of the little bugger with the right treatment and kick it to the curb. 

  • Sugar77
    Sugar77 Member Posts: 2,138
    edited August 2012

    Inmate - sorry to hear the news.  Fingers crossed the next chemo does the trick. (((((hugs)))))

  • DorisMarie
    DorisMarie Member Posts: 129
    edited August 2012

    ditto sugar's mesage

  • Babs37
    Babs37 Member Posts: 455
    edited August 2012

    âââwww crap......Was hoping the reason I couldn't hear the scream yesterday was because of the fog here...… I'm so sorry for the bad news inmate. I too will have my fingers crossed that the next chemo will be THE GOOD ONE! Big hugs to you. xx

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