Calling all TNs

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  • Radical2Squared
    Radical2Squared Member Posts: 460
    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.

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  • FierceBluebird
    FierceBluebird Member Posts: 758
    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

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  • simplelife4real
    simplelife4real Member Posts: 563
    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)))

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  • Lisaj514
    Lisaj514 Member Posts: 719
    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.

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  • Lisaj514
    Lisaj514 Member Posts: 719
    edited May 2014

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

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  • Stupidboob
    Stupidboob Member Posts: 345
    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

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  • tekwriter
    tekwriter Member Posts: 216
    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.

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  • simplelife4real
    simplelife4real Member Posts: 563
    edited May 2014

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

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  • mags20487
    mags20487 Member Posts: 1,591
    edited May 2014

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

    Mags

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  • MaryFox
    MaryFox Member Posts: 121
    edited May 2014

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

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  • simplelife4real
    simplelife4real Member Posts: 563
    edited May 2014

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

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  • FierceBluebird
    FierceBluebird Member Posts: 758
    edited May 2014

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

    I take metformin also.

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  • Lookingforward66
    Lookingforward66 Member Posts: 147
    edited May 2014

    image

    Here is a tidbit I saw.  Every bit helps. 

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  • MomMom
    MomMom Member Posts: 523
    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:-). 

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  • Homehelp
    Homehelp Member Posts: 84
    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

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  • Homehelp
    Homehelp Member Posts: 84
    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

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  • Radical2Squared
    Radical2Squared Member Posts: 460
    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.

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  • DorMac
    DorMac Member Posts: 155
    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

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  • tekwriter
    tekwriter Member Posts: 216
    edited May 2014

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

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  • Lisaj514
    Lisaj514 Member Posts: 719
    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? 

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  • Homehelp
    Homehelp Member Posts: 84
    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?

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  • Gramof2boys
    Gramof2boys Member Posts: 194
    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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  • bak94
    bak94 Member Posts: 1,846
    edited May 2014


    Fierce-that is terrific!

    Mags-Whoooo Hooooo

    Congrats to Mary and tekwriter! And Gram!!!

    Homehelp-I think most oncologist follow certain protocols determined by the status of the cancer. Sometimes options are given to the patient-patient can decide which way to go. I think it really depends on where you are and who you are seeing. My doc went against protocol and gave me AC for a second time. Glad he did because it worked. I had many heart tests to make sure it was not too much for me and had it administered in the hospital with a 24 hour drip. I have never heard of anybody else having it done this way. All I can say is that I was a very advanced stage 3/possibly stage 4 (some docs said stage 4) and I am NED as far as I know at this moment-all tests have been good.

    Just stopped by to say hi! I have had a tough week. First of all, the clinic where my primary and back doctor are fired me as a patient. I have been late on some bills with them. Not a significant amount-but I have so many medical bills coming at me from all directions I have a hard time choosing which ones to pay. Anyway, I had made two payments recently, one was $161 paid in April and the next one was $113 paid in the beginning of May. So I still owed $138 and that is when they sent the letter out. I have never been so upset, as I had been making payments. They told me to take my care elsewhere! I have been a patient there since 2000 and had my chemo and surgery there with my first bout of cancer, so you can imagine that my insurance has paid them hundreds of thousands of dollars. I had never been late on payments until this year. And now they gave me the boot. So after I received the letter saying this, I saw that my dog was limping, dragging one of her back legs. Did not know what to do, home alone and she is big. I called the vet and they could not get her in, recommended an emergency vet. Hubby got home and we took her in. Of course they wanted to do xrays, I can't even afford my bills how was I going to afford this, they said it would cost 250-400 for the xrays. We said unfortunately we could not do that, we could only afford the initial visit. Then she said she could do one xray for 100 bucks, so we said ok. Well, her leg was completely broken, at an angle. Vet said most likely cancer mets and she recommended putting her down. I cried like I have not cried in a long time! She said that how the leg was broken it could tear a main artery and of course that would be bad. So we had to put her down, right then and there. It was horrible, but I do believe it was the right thing to do. She was old for a big dog, about 14 years. We brought her home and buried her. Had a nice little goodbye for her and put her favorite bone with her. If anybody actually read all this thank you! I just need a place to write about my woes! Well, tomorrow is a new day and a new beginning.

    Really odd. As I was typing this I saw I got a call from Comcast. It is 12 am! How strange is that? didn't get to my phone in time to answer. Very odd.

    Didn't mean to write a book! Still having horrible sciatica pain. Still going to pt. Other than that feeling pretty good.

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  • DorMac
    DorMac Member Posts: 155
    edited May 2014

    Bak94, very, very glad to hear that you are NED! That is great news. Glad your doctor went against protocol!

    On the other hand, so sorry to hear about your troubles. Do you have another clinic nearby that you can attend? That is just a terrible way to treat a patient after what you have just gone through, especially over a small amount.

    But I am especially saddened to hear about your dog. It was the right thing to do but is such a difficult decision to have to make. Thank goodness you had her for the 14 years so she had a good, long life with you.

    Here's hoping and wishing that things get better for you today.

    Doreen

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  • Radical2Squared
    Radical2Squared Member Posts: 460
    edited May 2014

    Bak94,

    Of course the loss of doc's and healing bills suck, but I wanted to give my condolences on your dog. I'm crying as I type. No worse feeling...

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  • simplelife4real
    simplelife4real Member Posts: 563
    edited May 2014

    Bak, I'm sad to hear about your dog.  You did the right thing by putting her down, but it doesn't make it any easier or less sad.  Please be gentle with yourself in the days ahead.  Losing a dearly loved pet is a major loss no matter what.  ((hugs))

    Gram, congratulations on finishing your treatment!!!  I just finished last week.  Now it's time for us to work on regaining our strength and stamina.  I feel like I have a long way to go, but I can already feel some of the radiation fatigue lifting.  It's too bad we weren't in the same chemo group.  I was in the Sept. 2013 group and it has been a huge source of support.

    Tek, whoo hoo on finishing chemo!  That's a huge accomplishment and the hardest part of treatment as far as I'm concerned.  You did it!

    On the metformin question, my MO says she wants me to take it for the next 5 years.  I'm more than happy to do that.  I did have to build up to the full dose (850 mg twice a day) very gradually due to intestinal issues, but I don't have a colon due to severe ulcerative colitis in my 30's....so my intestines are a bit more sensitive than most people's.   I have no problems with the medication now after building up gradually.

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  • Luah
    Luah Member Posts: 1,541
    edited May 2014

    bak, I read your whole post (of course) and I am so sorry for all you're going through. Losing your dog must be heart-breaking, even though it was the "right" thing to do. And the mess with doctor's bills... that just sucks! (I feel tremendously fortunate to live in a place where I do not have to pay out of pocket for health care or deal with insurance companies, paperwork to get the treatment my docs think is medically necessary...not meant as any kind of political statement btw... it just doesn't seem right to me that people who are ill have to go through all that added stress.) Anyways, bak, feel free to vent anytime... and know that we've all got your back, and are hoping things look up for you soon! 

    Congrats to all the ladies who are finishing up treatment! Treat yourself to something nice.

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  • Nettie1964
    Nettie1964 Member Posts: 759
    edited May 2014


    Bak94,

    That is terrible about your furbaby!!  I’ve been through that and it just sucks!  But I agree that you did the right thing for her!!

    And about that Doctor’s office, that is just crazy!  I think I would give them a call and even try
    to speak directly to the doctor, I’ve had this happen before with some office worker (bookkeeper, office manager or the like) making the decision and sending out a letter that the doctor knew nothing about!  So please before you give up, make sure that the doctor is actually on board with this!! 
    Once I had to make payment arrangements with one of my doctors, the doctor was totally on board, but I got a letter from his bookkeeper telling me that if I didn’t make larger payments they would not be able to see me, so I just made a call and told the doctor what had happened and he was
    appalled!  He said that no letter like that should ever go out without his knowledge and he actually waved the rest of what I owed and the bookkeeper was reprimanded! The doctor actually thanked me for bringing this to his attention as he said that was a good way for him to lose patients and money!  Anyway, guess I rambled, but at least maybe think about talking to the doctors before you give up!

    Sorry about your sciatica pain, I have that also!  Hope today is better!



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  • FierceBluebird
    FierceBluebird Member Posts: 758
    edited May 2014

    bak94, there are no words to say regarding your loss, {{{{{{{{hugs!}}}}}}}

    And i agree with nettie. You need to contact doctor directly. And if they are still uncaring, i would file complaint with insurance company, insurance commission, and any organization in area that will listen. That it just heartless to fire you as patient. And as far as bills go just pay them $10 as often as you can. It shows you are trying to pay. 

    Hooray gram and tek!

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  • TifJ
    TifJ Member Posts: 1,568
    edited May 2014

    Bak- so sorry to hear about your beloved dog. Sending you a big hug that your pain eases and things get better with the doctor situation.

    Tiffany

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