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  • bak94
    bak94 Member Posts: 652
    edited May 2011

    Ok, I am sad now. I feel like I was starting to get some hope. I am an 8 year survivor or whatever you want to call it of stage 2b triple negative. But this April 5 I was diagnosed with a new primary in my other breast, stage 3 triple negative. I was hoping that because I responded so well to treatment the first time that this time I would too. Are there any stage 3 triple neg long term survivors? I am almost afraid to ask. On the stage 3 forums, most survivors are er+.

  • alexanjb
    alexanjb Member Posts: 32
    edited May 2011
    bk66-I sometimes go to the TNBC Foundation forum and there are some long term Stage 3s.  I sure am hoping to be one as well!  My theory is that if they can remove it & kill it by whatever means you are then NED.  You have a new primary and I am so sorry that really sucks, but that is better than metastizing.
  • Luah
    Luah Member Posts: 626
    edited May 2011

    More sad news, again, so soon... I don't even know what to say. Just numb.

  • sylviaexmouthuk
    sylviaexmouthuk Member Posts: 7,943
    edited May 2011

     Hello bkj66,

    I just wanted to say that on June 20th this year I shall have survived TNBC for 6 years and that after being diagnosed with a very large tumour. I have just had my six monthly check up with my oncologist and she said that all was fine.

     I am sorry to learn that you have been diagnosed with another TNBC in your other breast. I hope all  goes well with your treatment. Face it withe same strength that got you through it the first time. I can understand how you are feeling after such a long time. It makes me realise that I cannot take anything for granted.

    I am sorry that there has been so much sadness on this thread. I am thinking of all of you.

  • bak94
    bak94 Member Posts: 652
    edited May 2011

    Thank you alex and sylvia. everything comes in waves, positive thoughts and negative thoughts. then I read about justpayton, so sad. and then i realize i have many similarities to her-internal mammary node positive. i don't try to make it about me, but it is hard to not relate these losses to ourselves.

  • Suze35
    Suze35 Member Posts: 559
    edited May 2011

    bkj66 - I am sharing your fear right now...being Stage IIIc AFTER chemo and surgery I sometimes think "when" and not "if". That's when I start bargaining, "just one year clear to do the things I want with my family," ugh it is hard. There is a good thread that I read to give me hope "Stage IIIc survivors" I believe. It isn't nearly long enough, but it still helps.



    I try and remember that we are all different, and no one knows what is going to happen. My MO and RO still see me as curable. My BS is another matter. Hang in there!

  • SusieSGB
    SusieSGB Member Posts: 10
    edited May 2011

    bk66 - I'm so sorry you're going through all this again; I'll hold some good thoughts for you, too.

    Thanks to Titan and Sugar77 - I've made an appointment with my hairdresser from back in the day when I had hair and I'm getting this new ugly stuff dyed this Saturday. I do wish I'd found this site earlier!  You are amazing women.

  • MonikaV
    MonikaV Member Posts: 148
    edited May 2011

    Luah & Heidi. Who passed away?

  • MBJ
    MBJ Member Posts: 3,671
    edited May 2011

    Monika:  JustPayton had just gone into the hospital Stage IV last week or the week before so we knew it was just a matter of time, just not so soon. 

    (((Heidi)))) I don't blame you for not wanting to come on here with so much sadness and loss lately, for me I think it's important to post when we are healthy to keep the hope alive and to help encourage others with this deadly disease.  Having taken my own break before, I understand that sometimes it gets to be too much.  Big hugs!

  • HeidiToo
    HeidiToo Member Posts: 965
    edited May 2011

    F@ck it- we need a laugh:

  • alexanjb
    alexanjb Member Posts: 32
    edited May 2011
    bkj66-it's perfectly normal to feel the way you do, it IS about you and me....and all of us.  We can feel sad for those that haven't made it and feel sad for their loved ones and also relate to it very strongly and fearfully.  HeidiToo, well tell it like it is babe!  We do all need laughter as well.Laughing
  • Suze35
    Suze35 Member Posts: 559
    edited May 2011

    Heidi - LMFAO!!! Those cracked me up, lol! And I agree with your avatar 100%. Thank you for popping in and for the laugh :).



  • Titan
    Titan Member Posts: 1,313
    edited May 2011

    Oh man..you guys make me cry through my tears..JustPayton (Sam) was one of my first friends on here..we shared our love of sports and of our kids..her boys are active in basketball...so was my son when he  was in High School...She loved basketball..a complete fan..as I am..her boys were her world...we talked about alot of things...we put cancer aside to just talk about things...

    It hurts that I never met her face to face...she was only one state away and I never met her..I never saw her pic until I read her obit...her Mom died of BC when she was only six..she was glad that she got to see her kids grow up..somewhat..I think that they are in their early teens now..I just wish that I could hug them...this just makes me soo pissed of..she was determined to beat this..I honestly thought she would..dang it..

    I dunno..what can I say..this really, really hurts.

    Seriously Heidi..my husband looks just like that when he....puts on his "casual face"..funny stuff.

    And we have to laugh..and cry..for NOW we are still alive.....embrace it ladies..yes we have breast cancer..but FOR RIGHT NOW  we don't have to have it take over our lives...

    And to Sam....love you lady...I will always remember you, friend.

  • dlcw
    dlcw Member Posts: 34
    edited May 2011

    Hi all - just got home from my post-surgery visit with the oncologist and surgeon.  Residual disease of 2 cm in the tumor bed and 3 positive nodes.  Plus, found out that of the residual disease, about 30% of the cells are ER+.....so, guess I get the bonus of having both TN cells and ER+ cells.  Plan is to do AC/T, followed by radiation, then tamoxifen or an AI.  The oncologist felt that the ER+ wasn't really 'bad' news since the estrogen blocking drugs are available.  So, guess I will start AC in about 2 weeks assuming the surgery site is healed.  Haven't really had a chance to process the ER news, not that it really changes anything about the next treatment steps.  I think the positive nodes are more sobering than anything, but the cancer was still encapsulated inside the node and hadn't broken through so I guess that's a small bit of good news. 

    Hope everybody is doing well - Heidi I loved the cartoons, especially the cat.

    dlcw

  • Kymn
    Kymn Member Posts: 887
    edited May 2011

    Good evening ladies, had treatment number 4 today. Had a bit of a crying fit before hand so emabarrassing was delayed about 45 min for me to get my shit together.sigh. Well so far just tired and groggy. No sickness as of yet. hope it lasts I am really praying doxotaxol is much easier on my system. 2 more to go. or 1 more and then the last one .

    hugs Kymn

  • MonikaV
    MonikaV Member Posts: 148
    edited May 2011

    MBJ thanks for the info

  • Summer38
    Summer38 Member Posts: 96
    edited May 2011

    I haven't been on the boards too often lately but every once in a while I pop in to check on my "sisters". I am so saddened by the news of JustPayton! Titan, I must admit that as soon as I read it I thought of you. In my mind the 2 of you go hand-in-hand. When I was first diagnosed this thread was my lifeline and I felt like the 2 of you (and Heidi) gave me hope and a lot of laughs! She will be missed!

    For those of you who are dealing with recurrences - you're in my thoughts, stay strong!

  • Suze35
    Suze35 Member Posts: 559
    edited May 2011

    Titan - I am so sorry for the loss of your friend.  She sounds like a wonderful woman, and I regret that I didn't get to post with her.  You are right - we are alive NOW, and it is something I need to remember.  Hugs to you.

    dlcw - I'm sorry to hear your pathology report wasn't as good as you were expecting, but that 30% ER+ IS good news.  This opens up options for you in terms of post-surgery treatment!!  Take heart that your cancer did respond to the chemo, and remember that you will be hitting it with "novel" chemo now - something it hasn't seen before!  My cancer responded best to the A/C, so I have a good feeling it will do the trick for you.  The key is to now consider yourself an adjuvant patient.  You had your surgery (as many women do before chemo), and now you are doing your chemo.  That helps me stay grounded.  Hugs to you too!

    Kymn - I'm sorry you are having such a rough time.  My chemo nurses saw me lose it a time or two, you do what you have to in order to move forward.  The Taxol is definitely much easier - I've heard that if you have a hard time on A/C, the T is easy - it was true for me.  Hang in there!

    Summer - we have never "talked" but I am happy to meet you!

    Off to rads - starting to get a little splotchy in areas of sun damage.  Still getting the nausea, but the nurse finally admitted that it is probably from the rads - especially on the left side.  I'm still battling neck pain, and having a mild bout of vertigo.  I can't win!  Well, at least it is all stuff that is non-cancer, so I guess I am winning in that way!!

    Have a great day everyone!

  • MBJ
    MBJ Member Posts: 3,671
    edited May 2011

    Kymm:  We are all entitled to our occassional break downs but I am so sorry you are having a rough go of it.  Just breathe and know that you are almost done and you come on here and rant and rave and cry all you want.  Big hugs!

    dlcw:  I think knowledge is power--you do have a bit more ammo to fight this so that is where I would focus.  Big hugs to you, too!

  • Kymn
    Kymn Member Posts: 887
    edited May 2011

    Thanks MBJ pass the tissue puffs with lotion please

  • Babs37
    Babs37 Member Posts: 320
    edited May 2011

    Hi everyone. Just wondering, while you were doing rads, could you put aloe on your skin during treatments to help with the burning? I was told not to put anything on my skin but I see that alot of girls put some kind of cream or aloe and it's ok with their RO.......

  • MBJ
    MBJ Member Posts: 3,671
    edited May 2011

    Babs:  You MUST put lotions, aloe, all srts of creams on radiated skin!!!  PM Estepp and she will tell you what worked for her.  Hugs.

  • alexanjb
    alexanjb Member Posts: 32
    edited May 2011

    I was told to use Miaderm and/or Aquaphor during Rads.  I opted to use both because the Miaderm is more expensive but doesn't stain clothes so I used that with my good clothes.   I found a generic version of Aquaphor in Rite Aid Pharmacy and I used that at night and really smeared it on.  After burning I was given an Rx for a medicated cream.  The RO nurse also suggest a soak.  I can't remember what that was called.  I'll post if I remember.  It was dissolved in water and applied like a compress to the burned area.

  • Babs37
    Babs37 Member Posts: 320
    edited May 2011
    MBJ- Thanks. I don't understand why we don't get all the same information on this. I was told by my RO and nurses to put cream before I started rads. But once it started, not to put anything on it. I'm at my 10/25 rads today and I am red!!! It does not hurt to much yet but it is starting to be more sensitive. I will pm Estepp for her input on this. Thanks again. 
  • tracie23
    tracie23 Member Posts: 214
    edited May 2011

    kymn, I am so glad you are almost done , you can do it..... through all the shitty SE .. sending you hugs

  • Lynn18
    Lynn18 Member Posts: 284
    edited May 2011

    I am also so sad to hear about JustPayton.  That makes three TN's that are gone.  First it was Olga, then Pauldingmom, and then Sam.  I feel sad about all the children who have lost their moms.  My heart goes out to the families of these women . . .and I know it must be especially hard for you Titan, since Sam was your special friend.  You are right, we have to laugh, and cry, and go on with our lives.  Easier said than done.

    Heidi:  Thanks for posting the pics, and I like your avatar.

    Kymn:  Glad you are almost done!

    dlcw:  I hope you are healing from surgery.  Sounds like good news that you are somewhat ER+, hopefully you can benefit from taking something afterwards.   

    Summer38:  Good to hear from you, 

  • HeidiToo
    HeidiToo Member Posts: 965
    edited May 2011

    OK, another diversion for you guys...

    Meet Russell... new patient. If I'd had pink vet wrap it would be Sheryl...

    Hopefully he'll do better than the loon I had last month, as the nature center I work at would like to have him if he does not regain flight capability.

    Birds are tough... very little warning before they go belly up. Keep your fingers crossed; I'd like to see this guy survive.

  • Titan
    Titan Member Posts: 1,313
    edited May 2011

    Hey Russell..hang in there...!..forgive my ignorance Heidi..but what kind of bird is Russell..educate me...I'm not much of a nature person...and just because I don't know what kind of bird he is doesn't mean I don't like him...in fact I admire YOU so much Heidi..all the work you do to help these little guys survive...

    Thanks for your comments ladies about JustPayton (Sam)...and it was good to hear from you Summer..missed you...

    We picked my son up from school today..He went to a private school for 2 years but is now transferring to Ohio State...He will be fine there..He had to transfer due to financial reasons..Private schools are EXPENSIVE!   But he is hurting right now because he loved that school...I'm hurting too...I'm just pissed off...college is sooo dang expensive..how can the normal person pay for this?  

    Kymn..hang in there.you are almost DONE...we will party with you when you are done..and please don't be embarrassed about crying b-4 your treatments..we have all felt the same way...I used to cry a little the night b-4 a treatment..My DH would say..OK..just quit...if you feel that is what you want...of couse that is what I wanted...

    It's really true that we need a good support person throughout all this...My DH just listened while I went off on him...and I found out that he cried after my surgery when the BS said everything went well...I have to admit that I was a little surprised.

    About the rads/cream thing...why in the HECK would your rad onc tell you to NOT use creams during rads?  What was their reason???? I have never heard of that...

  • cmksocal
    cmksocal Member Posts: 163
    edited May 2011

    I think I was told not to use the cream on the morning before rads (or it was within a certain time period before rads).  I used cream in the evening.

    Colleen

  • Pamelajo
    Pamelajo Member Posts: 124
    edited May 2011

    Titan-I've missed your sense of humor girl!  The skin mets are a pain in the foob, but Xeloda is knocking them down.  I actually had a onc appt yesterday and he extended my visits from every 6 wks to 9 wks......so I guess I'm doing good.  All my bloodwork is coming back fantastic, so once I get rid of these pesky mets, I'll be good to go.  Not Stage 4 mets.......just 3b  LOL  as if that makes a difference at this point, having had a dr's appt every month or two or three per month for the last 2 years.  I'm ready for a break.  But the xeloda is easy on me, with the exception of hand foot syndrome.  but even thats manageable.

    Love to all of you.  Keep the faith and try to be as healthy as you can, and you'll do great

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