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  • adagio
    adagio Member Posts: 713
    edited May 2014

    luvmydobies - your fears are understandable - we all have them from time to time. For me, I find keeping myself very busy with friends, going for long walks and trying to live in the moment seem to work for me. I get fearful of mets, I often question my form of treatment - but what is done can not be undone, so. I must live in the moment and truly appreciating that I have this day to enjoy rather than worry! I am also triple negative, and my MO does not do any scans or blood tests. I am learning to trust her expertise.  Hope you start feeling better soon.

  • FierceBluebird
    FierceBluebird Member Posts: 463
    edited May 2014

    Here is my long saga. One month ago I was in the hospital with pneumonia. Ct
    scans and chest xrays show lots of radiation damage with the pneumonia
    and some suspicious areas. Supraclavicle lymph nodes are swollen.
    Doctor number one wants to do a lymph node biopsy, which is somewhat
    invasive because the lymph they want sits on my lung. Doctor number two
    says forget the lymph node, get a lung biopsy. (major surgery) Doctor
    number three says, could be radiation damage, but talks to doctor number
    two (same hospital) and says go for lung biopsy. Doctor number four,
    (same hospital as doc #1) says lymph first, then lung if necessary.
    Sounds good to me but I get yet one more opinion with doctor I had
    already set up to talk about trials. Doctor #5 says he thinks it's
    radiation damage, but go ahead with lymph node biopsy since it was
    already set up. (Okay, hope everyone was paying attention because
    there is going to be a quiz after this! )

    Okay, so my lung lymph
    node biopsy is scheduled for today. It's a two hour procedure. I'm on
    the table, gowned up, IV in, anesthesia prepped and ready to go, 10,000
    forms signed and dated, and surgeon walks in. Feels my lymph nodes and
    there is nothing to feel! After all the opinions, the lymph nodes have
    settled down and my lungs are clearing up. The surgeon steps into the
    hallway to call doctor #1 and tell him the news. I look at my husband
    and say with a frantic look, "WHAT SHOULD WE DO?" My husband says, "I
    don't have a medical opinion!" LOL! The surgeon comes back in and says
    she's cancelling the surgery and I can go home. All the nurses and
    anesthesia people and we could hardly believe it but it was awesome! I
    got up off the table, got dressed and went home!

    Ran away as fast as I could go before they changed their minds! Nothing like a "get out of jail free card!"

  • Luvmydobies
    Luvmydobies Member Posts: 476
    edited May 2014

    Thanks Adagio! Bluebird that's awesome! What a whirlwind but at least there was a good outcome. Praise God! Your hubby's comment made me laugh. 

  • jenjenl
    jenjenl Member Posts: 409
    edited May 2014

    Luv - my MO is the same way no scans, no blood-work or anything.  At this time I am just trusting I made the right decisions, if you don't trust yourself you'll go crazy...so knock it off and go out there and live sweets!  It over, you did it. 

    Re: antidepressants, I took celexa for a while after dx, it wasn't until a few months ago that I was able to go off of it and not cry all day.  I tried to get off of them earlier and I was under tables crying and acting nuts.  There is no hurry to get off...if you are concerned go to something less addictive.  We picked Celexa for me bc I have a highly addictive personality.  Maybe the time isn't right for you...just yet

    Re: food, some days I do good and some days I don't do good (which is most days) and you know what it's ok.  Don't be so hard on yourself....please :)  I can relate everything you are saying...young at dx (33), TN and BRCA1+.   I think the 1st year when treatment is over is the hardest, the next year gets better.  Again, be kind to yourself....praise yourself for everything you've done not what you haven't done or should do.  xo

  • jenjenl
    jenjenl Member Posts: 409
    edited May 2014

    Fierce - HELL yeah get out of there....enjoy.  I'm smiling ear to ear for you tonight :)

  • meadow
    meadow Member Posts: 998
    edited May 2014

    way to go pretty bluebird!

  • lilyrose53
    lilyrose53 Member Posts: 120
    edited May 2014

    SimpleLife - Yay for you!  Must feel great knowing you can actually go somewhere FUN instead of doctor appointments!  You go girl!

    Luvmydobies - I hear ya on the fears.  TN just plain sucks!  I try so hard not to allow myself to think about mets too much.  Already had 'something' show up on my baseline PET scan.  Nodules in my lungs.  My MO really wanted me to have them biopsied but the doc who was supposed to do it said they were in a spot that would be almost impossible to reach with a needle biopsy.  I voted no.  I will wear my rose-colored glasses and try to think positive.  They didn't light up like cancer so I'm hoping they are a result of my having had pneumonia.  Also, I have never had Dobies but my SIL has had several.  They are big love bugs! 

    Fierce - Wow!  Ya, run out of that hospital as fast as you can!  Love your DH's comment!

    jenjenl - my MO says to try to eat healthy, but not to beat myself up over eating things I enjoy.  So if I feel like a bowl of ice cream, I eat it!  :)

    Wishing you all well!  Hugs,  lilyrose

  • Luvmydobies
    Luvmydobies Member Posts: 476
    edited May 2014

    Thanks jenjenl! XOXOXO

  • Radical2Squared
    Radical2Squared Member Posts: 350
    edited May 2014

    Lily-

    My pre-operation testing showed nodules in my lung too. My breast surgeon told me it would be dealt with at a later date. My Aunt was in the room when the vs told me this. My Aunt had lung nodules that turned out to be scars from smoking. I too smoked. I know I'll look into it for myself once I am through the breast cancer end of it, but I get the feeling the lung module thing is very general and quite common.

  • FierceBluebird
    FierceBluebird Member Posts: 463
    edited May 2014

    jenjen, love that "praise yourself for everything you've done not what you haven't done or should do"

    Thanks everyone. Here's me running like hell yesterday:

    image

  • simplelife4real
    simplelife4real Member Posts: 341
    edited May 2014

    Fiercebluebird.   I am SO HAPPY for you.  I bet you were so glad to get outta there!  That is the best news I've heard in a while. I hope you celebrated at least a little last night.  (((hugs)))

  • lisaj514
    lisaj514 Member Posts: 289
    edited May 2014

    any of you tn gals taking metformin? A diabetes drug that is has been shown to decrease incidence in recurrence for tnbc, kind of like targeted tx tamoxifen for hormone positive BC.  I know you are inspiredbydolce from prior discussions. Talked to my mo about it and she looked into it and discussed with an endocrinologist and is willing to put me on it, after I finish rads. I am 4 wks PFC. Scan for rad sim on Friday them starting soon after.

  • lisaj514
    lisaj514 Member Posts: 289
    edited May 2014

    fierce, so funny, picturing you running out of there in your hospital gown and all, barefoot etc

  • Stupidboob
    Stupidboob Member Posts: 330
    edited May 2014

    http://blog.thebreastcancersite.com/dog-bone-cancer-vaccine-may-help-against-breast-cancer/?utm_source=social&utm_medium=bcsfan&utm_campaign=dog-bone-cancer-vaccine-may-help-against-breast-cancer&utm_term=20140520

  • tekwriter
    tekwriter Member Posts: 74
    edited May 2014

    I am a diabetic and I talked my endo into putting me on metformin.Didn't see any reason not to do it.

  • simplelife4real
    simplelife4real Member Posts: 341
    edited May 2014

    Lisa, I take metformin.  My MO prescribed it for me  850mg two times a day.  

  • mags20487
    mags20487 Member Posts: 1,092
    edited May 2014

    Fierce...awesome!!!!  Run Forest Run!

    Mags

  • MaryFox
    MaryFox Member Posts: 88
    edited May 2014

    I'm done.  Last rad today so treatment is finished.  I'm going to celebrate with butter pecan ice cream.  

  • simplelife4real
    simplelife4real Member Posts: 341
    edited May 2014

    Congratulations Mary!!  It's been a long road.  You did it!

  • FierceBluebird
    FierceBluebird Member Posts: 463
    edited May 2014

    congrats mary! Enjoy that ice cream! It might feel good on your skin too. Winking

    I take metformin also.

  • lookingforward66
    lookingforward66 Member Posts: 148
    edited May 2014

    image

    Here is a tidbit I saw.  Every bit helps. 

  • MomMom
    MomMom Member Posts: 334
    edited May 2014

    Hi Ladies,

    Had an easy 4th of 12 Taxol infusion today and tried your ice packs Lisa - they were awesome!  Much colder than the Elastogel.  Your timeline and DX are very similar to mine, but you are a bit ahead of me in treatment.  I'm already wanting my rads to start asap after Taxol.  My RO said about a 2 week break, and I will find out tomorrow if my MO wants a longer one (I've heard maybe a month? which sounds too long for me).  Maybe I can get the scan and tattoos done while I'm at the end of Taxol to speed things up if I'm still doing well w/it by then.

    Lisa - I'm also going to do research tonight and find out what I can about Metformin and TN.  So interesting, my MIL took it forever for her diabetes.  Does it have any bad side effects?? 

    My MO is also considering Zometa - bone strengthening drug w/2 infusions a year.  I think if I do this, would be starting it in about 3 wks or so.  You first have to have a consultation w/your dentist to make certain you have no dental issues.  There is a jaw necrosis condition that can arise.  Don't think it's common, but concerning.  I'm told that Zometa lowers your recurrence rate by another 3%.

    Fierce Blue - Love, love, love your story.  The BEST EVER!!!  Miracles do happen:-).  Loved the pic of the kid running down the hospital.  Lol!

    Mary Fox - Congratulations!!!!!!  I myself have a small bowl of ice cream just about every night.  It's one of the few unhealthy things I eat and hey, it does have calcium:-). 

  • Homehelp
    Homehelp Member Posts: 64
    edited May 2014


    That is great news Bluebird !

    Just curious ...does every MO give chemo regardless of the size ot the tumor  or nodal status in triple negatie tumors ?

    Since there is no "Oncotype" score foe estrogen negative tumors , what does the MO use to determine the regimen ?

    Whether to use Adriamycin or not , or how many cycles?

    thanks

  • Homehelp
    Homehelp Member Posts: 64
    edited May 2014

    Thanks for the posts

    Just curious ... current recommendations for TNS , post mastectomy , node negative , margins free ?

    Is there any standard ?

    MO may want to treat but so might the Rad Oncologist ... any long term data and protocols ? Any standard regarding the chemo drugs used and number of cycles ?

    Are the antiestrogens ever used in women with TNS?

    The use of Metformin , does anyone know the length of time and dose  someone would be on that drug .. assuming they are not diabetic ?

    Thanks

  • Radical2Squared
    Radical2Squared Member Posts: 350
    edited May 2014

    Regarding tn breast cancer, my oncologist called it, "a tricky devil that likes to show up where it's not supposed to" when he told me I would be getting chemo.

    I guess that is why most oncologists treat tnbc with chemo no matter what.

  • DorMac
    DorMac Member Posts: 153
    edited May 2014

    Since there is no drug to take after surgery (like Tamoxifen) that will have an effect on TN cancer, chemo is usually the recommended treatment. 

    Adriamycin is a commonly used chemo drug but it can be hard on the heart so, if there are any heart issues, it is not used.

    There is a drug trial for Metformin but I did not qualify as I am slightly diabetic. My PCP wrote the prescription for me. The  trial dosage is quite high 850 mg. twice daily but gastro-intestinal issues can be an issue so it is recommended that you start on a lower dose and increase it gradually.

    Good Luck to everyone in treatment or dealing with SE and to all the "newbies"!

    Doreen

  • tekwriter
    tekwriter Member Posts: 74
    edited May 2014

    Doing happy dance finished chemo today!!!!!!!!!!!! NO MORE TAXOL YES!! Had liver to celebrate, so yummy.

  • lisaj514
    lisaj514 Member Posts: 289
    edited May 2014

    yea tek, happy dancing for you too! Umm... liver to celebrate? Couldn't think of anything better, I could lol!

    Home help, good questions! Adriamycin and cytoxin (given together A/C) and taxol (either dose dense-4infusiins 2 wks apart (I had) or 12 weekly infusions) are the common treatments for BC either er/pr + or -. Anti estrogens would have no bebefit in tnbc because our cancer is not fed by estrogen or progest. Good ? about length of time on metformin. I'm thinking 5 yrs like tamoxifen? Anyone want to weigh in on this? 

  • Homehelp
    Homehelp Member Posts: 64
    edited May 2014

    my wife's oncologist said that the most recent studies show that Cytoxan and taxol are just as effective as the three drugs without the risk of cardiac toxicity.

    From what I have seen on this site many of the women  have received all three of the drugs and a significant percent receive two of the three drugs.

    How is that determined ? Also number of cycles ?

    Also in terms of external beam radiation after bilateral mastectomy with negative margins and negative lymph node involvement there also seems to be a wide discrepancy in terms of treatment.

    Are these treatments based upon the individual medical oncologist,the size of the tumor, the grade of the tumor or related to the patient's directives of their own therapy?

  • Gramof2boys
    Gramof2boys Member Posts: 60
    edited May 2014

    Just checking in with everyone! I finished rads yesterday!! What a long 9 months of treatment it has been. I'm taking the summer off from all this and will have my reconstruction in the fall. I have a follow up with RO in 1 month and with MO in 2 months, wow I don't think I have had a break that long from any MD visits or treatment. Hope I can put this in the back of my mind for awhile and enjoy my summer and grandkids! Off to the beach next week! I hope everyone has a great Memorial Day weekend!!

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