Calling all TNs

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  • InspiredbyDolce
    InspiredbyDolce Member Posts: 1,181
    edited June 2013

    Hi Jan69 - the local news said that the 3 health clinics in town will be giving free Hep A vaccinations this week, and so I'm calling the Onc's office right at 8:30 AM!  I will keep you posted.  :)

    Congrats Julie on such a wonderful update for us!

    Hope everyone is doing well today - sending everyone a big hello!

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  • Cocker_Spaniel
    Cocker_Spaniel Member Posts: 1,204
    edited June 2013

    Thank you for the article Wrenwood. Very interesting. I do wonder whether if we have or are thinking we will have all the extra surgery whether it is really neccessary because it doesn't mean you won't get cancer will it and we might put ourselves through this for nothing.  I was thinking of having the other breast off and an oophorectomy to avoid getting it somewhere else in the future,  but because I'm a coward  I'm only thinking about it!!.  

    Inspired a big hello to you too but why are you having a Hep.A vaccination?

          

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  • Lovelyface
    Lovelyface Member Posts: 674
    edited June 2013

    Angelina Jolie was seen with Brad Pitt in a concert yesterday.  She was wearing a thin strepped dress, looking great.  Apparently,  she doesn't seem to have much scars from the surgery, at least what could be visible around the neck, arms, etc.   Wrenwood - yes, that artile is something, it has a lot to say.  I am gonna have to read it again, as I just glanced at it for now.  The whole country, the whole world, all the experts everywhere have yet to learn so much about this dreadful disease.  But yes, it is pretty shocking to hear on the news, how they talk about the exact percentages, in the case of Ms. Jolie.  How can they be so damn sure of the exact percentages?  That doesn't make much sense.

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  • Fighter_34
    Fighter_34 Member Posts: 834
    edited June 2013

    Greetings ladies! So good to log in and catch up with familiar faces.

    Lovelyface-most of the scars would be around the center of the breast so unless she flashed you; you can't see them. Welcome back it is nice catching up with you. We all have fears but I hope you can get to the bottom of your concerns.

    Titan I can run up to at least 2.5 miles in one sitting. Yeah me!!!

    LvRving-good to read your good news!

    Cocker, Navymom, Innmate and everyone else hello. Sending my encouragement to those going through treatment at this time.

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  • Lovelyface
    Lovelyface Member Posts: 674
    edited June 2013

    Hey Fighter - So good to hear from you.  2.5 miles, wow!!!!!  That is awesome.  The most I had done was 0.5 miles in one sitting.  Keep up the good work!  You have me inspired.

    Yeah, Jolie is not flashing, but I am sure everyone is wondering.  She has no puffiness on her face, no visible after-effects of surgery, my goodness, what are celebrities made of?  I think I had puffiness and visible signs that I had had surgery, even with my lumpectomy.  Maybe it has been a while, I am not sure when she had the surgery.

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  • mags20487
    mags20487 Member Posts: 1,591
    edited June 2013

    I wanna say I read the surgery was in March... I am sure she had nipple/skin sparing so they would look pretty good.  Mine are a royal mess but more surgeries in the future to perfect the canvas of my flaps that are now in place.  Can't wait to see how my 1 butt boob and 1 belly boob end up looking

    maggie

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  • InspiredbyDolce
    InspiredbyDolce Member Posts: 1,181
    edited June 2013

    Babs - am I the only one who never got their eyelashes totally back?  LOL  Mine are still very short, and can't wear mascara yet, as the brush would probably hit me in the eye.  :)  I am 16 months post treatment and not much happening there.  My eyebrows are also the same.  I don't mind, (thank goodness for Revlon and wigs), but right before treatment I plucked my brows in a hurry, and kind of have them a little uneven.  They have just remained in this same position, so when I brush them on, I have to adjust for the slight difference between the two.  :)

    I got my Hep A Vaccine shot today.  The second shot comes in 6 months.  My Onc is on vacation out of the country, but the Nurse told me to go get it done.  I ate those recalled berries from Costco.  Well, I ate them, but not after the recall.  LOL

    Stay cool ladies - it's 108 here today! 

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  • Stupidboob
    Stupidboob Member Posts: 345
    edited June 2013

    Has anyone had heart issues with Taxotere.............my doctors are saying it is not the drug but I was doing ok until I started this regimine.   I had a few issues but nothing like this.   Here is an update.  Also, has anyone due to heart issues not been able to get radiation?

    date on me:  The Heart Monitor revealed that my heart is all over the place (long story short).  Seen the Cardiologist today and have to start Bystolic (Beta Blocker) and have an Echo and a Stress test.  All this week.   Depending on what they reveal we will do further testing but definately will redo another monitor.  He is getting the strips from my doctor and not just the report, he wants to read it himself.  He knows I will fail the stress test but he said that if I can maintain (he will be present) and he is satisfied we will put off doing the medical one for the time being.  If he does not like what he see we will move on to many other test.   Please pray that I can get this all taken care of with little effort and none or very minimal side-effects from the drug.   They all swear I will feel alot better as my heart is just way to over worked.

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  • JAN69
    JAN69 Member Posts: 947
    edited June 2013

    SBoob -  So sorry for your heart issues.  It sounds like you have a very thoughtful cardiologist who will watch you carefully.  Prayers

    Inspired Debra - Glad you were able to get that vaccine today.  Who would have guessed we could get sick from berries  -- from Costco!

    Hair ------ I never had much to call eye lashes or eye brows.  But my hair came back in on time, but now my hair is falling out again...  I'm doing a Donald Trump comb-over now.  This f'n BC just never gives up!

    Shout out to Cocker, Fighter, Mags, Lovelyface, NavyMom, and everyone else on previous pages that I can't remember.    Jan

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  • Cocker_Spaniel
    Cocker_Spaniel Member Posts: 1,204
    edited June 2013

    To all those ladies doing the 2.5 miles in one sitting - I'm very very good at the sitting!!  I think my bum is the biggest bit on me.

    Stupidboob praying that you get all your heart issues sorted out and nothing is wrong.

    Mags your boob is a mess and mine isn't there. What a great pair we make lol.  Am I missing something what berries did you eat?

    Fighter hello to you too. Good to see you posting and hope you are doing well.     

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  • mags20487
    mags20487 Member Posts: 1,591
    edited June 2013

    belly..not berry cocker LOL.  I had bilat diep(belly tissue made to breasts) in Nov and leftie did not survive so in March I had tissue from my bum made into leftie.  My last surgery was May 22 for a lymph node transfer to help my LE.  Next go around will be in Aug when she starts on symmetry of new breasts and perfects them

    stupidboob...sorry about your heart problems.  may the docs find something to help

    maggie

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  • netty46
    netty46 Member Posts: 296
    edited June 2013

    I had a local recurrence and I don't know what believe when I read these post. I recently saw my doc and she said 5 percent chance of coming back to breast and less than 5 in rest of body. I questioned her cause those numbers sound way off but she said she does nit throw out words to her patients just like that. I also sent for my records and there were her clinical notes with exactly the same numbers. I'm tn . It was 3 cm. Nodes were clean. I had 6 ct and 25 rads. She specializes in tn. Still my husband had to convince me too believe her. The stories here make me wonder.

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  • Lauren15
    Lauren15 Member Posts: 119
    edited June 2013

    Hi All, I've been lurking in the backgroun learning from your great wisdom, laughing at the good stuff, and praying for those that need it.  I just rec'd my pathology report after by BMX (neoadjuvant chemo).  My MO had said during one of my visits with him while on chemo that it was extremely important for me to have a pathological complete response.  If not the chances of recurrence were much higher.  Unfortunately, I rec'd a report that showed I had clean margins, no lymph node issues, but still had a residual tumor of 2mm (very small).  I keep thinking one more chemo treatment may have gotten it.  Would any of you knowledgeable women help me understand what to do next.  I'm so scared of a recurrence.  Should I be sending the pathology report to a well-known center; if so who.  Has anyone had a situation like mine?  Thanks so much!!!!  Lauren

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  • jenjenl
    jenjenl Member Posts: 948
    edited June 2013

    I can't help you bc I had surgery before chemo and now I will never know if chemo responded.  So pissed.

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  • JAN69
    JAN69 Member Posts: 947
    edited June 2013

    Lauren - Same here:  surgery before chemo or rads.  Maybe not so pissed as jen.  Good luck no matter what.

    J

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  • encyclias
    encyclias Member Posts: 302
    edited June 2013

    Lauren, that is exactly what happened to me.  I started with two tumors in my right breast, each  2cm+, and by the end of my A/C chemo, all that was left was a 3mm residual carcinoma of one of them -- not even visible on a mammo -- which the surgeon removed.  My margins are clear, my nodes now are clear (there was cancer in one or two of them originally).  I thought the same thing: one more chemo might have done it!

    Monday, I will be starting rads and according to my RO, that should take care of any cancer which may be hidden.  However, for years to come I will have to keep an eye on the situation, being a triple-negative.

    Good luck to you!

    Carol

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  • Alibeths
    Alibeths Member Posts: 656
    edited June 2013

    I'm tn as well and start chemo in one week!!!! Act.

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  • Fiercer
    Fiercer Member Posts: 45
    edited June 2013

    Lauren- I've not had my surgery yet, had 4 rounds of CT. My MRI with contrast showed no biological activity to the tumor. My clip was placed after chemo as my original drs didn't leave one. The surgeon said there is a possibility that some cancer remains, but its gasping for breath and dying. As long as the margins are clear, and no large blood sucking mass remains, we must be good!!!!!! Right????



    Lisa



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  • mags20487
    mags20487 Member Posts: 1,591
    edited June 2013

    Surgery then chemo then rads...sorry cannot help with advice except to say if you are not comfortable with the docs approach then definitely get a second and even third opinion. Check out tnbcfoundation.org too for tn specific advice and info



    Maggie

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  • Fiercer
    Fiercer Member Posts: 45
    edited June 2013

    Ladies- I am having the worst hot flashes you can imagine. I saw my onc today and FORGOT to ask what to do......





    Can anyone share some success stories on controlling or stopping them?

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  • CLYDAY
    CLYDAY Member Posts: 81
    edited June 2013

    Lauren...I had neoadjuvent chemo 4xdose dense/ac every two weeks followed by 12 taxol. Fortunately I am an ultrasound tech and was able to watch my tumor shrink to nothing. My path report showed clear margins after Bmx...but did show very early stages of DCIS. Did they say if the residual tumor was IDC?

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  • sweetpickle
    sweetpickle Member Posts: 749
    edited June 2013

    ldawson-  I kept several ice packs in my fridge and slept with them either on top of my head or I put them in my pillow case and laid on them.  Hot flashes are the worst!  Hope it passes soon for you.

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  • sweetpickle
    sweetpickle Member Posts: 749
    edited June 2013

    Lauren-  Even with PCR as a triple negative you will still have a risk of recurrance just by the aggressive nature of the cancer.  I just got my path report back after neoadjut. and I did get a complete pathological response.  No sign of cancer in original tumor site, lymph nodes or skin.  While I am thrilled with this news, my surgeon was quick to point out that I have to stay vigilant the rest of my life just because I'm triple neg.  So now I will be checked every three months for two years and then we move to every six months.  Hopefully I'm done with cancer but there are no gaurantees.  I plan to live like I'm cured until someone tells me different.  Try not to get to caught up in worrying about the future, it will drive you crazy.

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  • Lovelyface
    Lovelyface Member Posts: 674
    edited June 2013

    Sorry Lauren, I can't help because I had surgery before chemo.  That is a tough one.  Good Luck!

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  • Cocker_Spaniel
    Cocker_Spaniel Member Posts: 1,204
    edited June 2013

    Lauren like everyone it seems, I had surgery before chemo and rads.  Never thought to ask if I had a pathological response though after chemo.

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  • GoWithTheFlow
    GoWithTheFlow Member Posts: 727
    edited June 2013

    Lauren, that sounds like a great response to chemo.  I had a PCR, and I can tell you my surgeon was very surprised when he got the pathology report after surgery.  We knew it had shrunk to where it couldn't be found on ultrasound, but he still expected something there.

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  • jenjenl
    jenjenl Member Posts: 948
    edited June 2013

    sweetpickle - " So now I will be checked every three months for two years and then we move to every six months."

    What does checked look like for you? 

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  • Alibeths
    Alibeths Member Posts: 656
    edited June 2013

    Jen-- I saw you got your ovaries out. Is it horrible!!!

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  • Alibeths
    Alibeths Member Posts: 656
    edited June 2013

    Also, did everyone get steroids with the ac portion of chemo??

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  • schatzi14
    schatzi14 Member Posts: 1,647
    edited June 2013

    I had a lumpectomy first and then AC and 12 weekly taxols. Yes there were steroids with AC. Actually they helped with the pain I have from herniated discs in my neck. A plus for chemo other than the intended use.

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