Triple Negs - Fall 2008 Update

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  • kranie
    kranie Member Posts: 33
    edited December 2008

    New to this thread. I was identified as having BRCA1 mutation after my onc set up genetic counseling and testing , 3 years ago. At the time, I was a 14 year survivor. He wanted me to have the testing because I am Ashkenazi descent. The reason the testing is less expensive, is they have idenified 3 places on this gene in Ashkenazi jews who test positive for the BRCA1 mutation. So, they only have to look at 3 places. If you are not Ashkenazi, they need to test the entire strand.Thus, more cost.

    I had my ovaries and tubes removed then. I am sorry now that I did not have a prophylactic mastecomy at the time, as I was diagnosed again in Sept. 08. I had bilateral and free flap reconstruction. I started chemo 10 days ago(TC X 6) and am starting to feel that maybe I should be getting something more aggresive or more appropriate for TNC. I don't see the onc till the 6th. I think I may call and talk to nurse a bit about this.

    Karen in Pittsburgh

    Karen in Pittsburgh

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  • FloridaLady
    FloridaLady Member Posts: 2,155
    edited December 2008

    Karen,

    Sorry you had to join us again.  Thank you for your insight on the gene test.  I'm with you in your thinking of more treatment.... having node involvement you may need more chemo's.  Your doctor may be just starting with this and moving to more after this line of treatment.  I would not be surprised if he is.  Do speak with him at your next appointment.

    I hope you are doing well with this treatment so far.

    Flalady

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  • tibet
    tibet Member Posts: 545
    edited December 2008

    hi Karen

    Sorry you got it the 2rd time. Was your first time also a triple negative? So this makes the 2rd time a new primary not a recurrence, right?

    I did not know about the gene test about Ashkenazi descent. So it means the gene can pass on even when no one is in the family in your case?

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  • suzannek
    suzannek Member Posts: 1
    edited December 2008

    Hi Deb

    As I was lurking in this discussion group, I noticed that you live in Ann Arbor too!

    I am 55 years old, DX 9-7-08, 3cm, node neg, 2 surgeries currently doing chemo 4xAC, 4xTax. I started chemo at UM 12-02-08. If you ever want to to talk, please contact me at spudpug2000@yahoo.com.

    Sue

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  • marshabel
    marshabel Member Posts: 142
    edited December 2008

    Hello, ladies - I was diagnosed with triple neg IDC, node negative, in Jan. 07. I had a lumpectomy,  ACT x 6, then 34 rads, finishing Oct. 31. Just 3 months later, I had a recurrence in the axillary lymph nodes, then surgery to remove them. I started chemo again almost 1 year to the day of my first round of chemo! This time my cocktail was CMF, but I did oral cytoxin instead of the IV cytoxin I did previously. I couldn't have any more rads to the area, so I finished treatment in Aug. 08. I have had some scans since then, with some suspicious spots in the lung that warrant watching for changes. My biggest worry right now is that there is a hard lump in the same breast, but tests indicate a cyst. (I have had a mammo and MRI.) I am due for another mammo in February, and although I try to think positive, I just don't trust that it is JUST a cyst!  I wish that I could stop worrying, and just trust the test results. Have any of you been diagnosed with a cyst that turned out to be something worse?  Oh, by the way, I was first diagnosed at age 50, I'm about to be 52.  Good luck to all of my sister TNs!

    Marsha

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  • VickiG
    VickiG Member Posts: 536
    edited December 2008

    Oral cytoxin?  I had no idea that's even available... did you tolerate it any better than the IV Cytoxin?  I had TAC the first time around, and just started on CMF 2 wks ago... I really hate Cytoxin!!!!!!!!!!  I've always had sinus issues, so it's really hard on my sinuses.

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  • wyojan
    wyojan Member Posts: 6
    edited January 2009

    Hi Marsha -

    I was told my lump was a water filled cyst and to lay off the coffee...docs tried for a couple of months every few weeks to drain the cyst.  Finally had a surgeon do an ultrasound guided attempt to drain it, couldn't..so the next week she cut our the "cyst".  The next day she called to tell me I had advanced TN breast cancer that was pretty aggressive.  Great news to hear over the phone...nobody had ever mentioned the possiblility of breast cancer.  So boy was I shocked...I did howver discover that no amount of tequila will kill TNEmbarassed

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  • kranie
    kranie Member Posts: 33
    edited January 2009

    Hi, I'm back. I met with my onc. yesterday because my 2nd TX is on Wed. I asked about my prognosis and there was a bit of a silence. Then he said I am at a fork because of the TN. Some do as well as to be considered cured and then... I talked to him about Avastin and he said it is still in beginnings of trials. I would not be eligible, as I was in another trial 17 years ago. They didn't know about her2nu or TN then. I asked how we could know if the chemo is working and he said we don't. I need to ask some specific questions. Any suggestions?

    I am feeling very vunerable and a lot scared today. I was going along just accepting everything as "routine". Well, you can tell I'm having a down day and I have chemo tomorrow. Just laid in lots of comfort food from the store, but forgot ice cream! Maybe I'll go back out and get it. Nothing cheers me up like ice cream can!

    Thanks for listening,

    Karen

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  • FloridaLady
    FloridaLady Member Posts: 2,155
    edited January 2009

    You might want to check around near you if a clinic will give you Avastin.  I receive Avastin three years ago outside of a trial at my local clinic. You maybe surprised what you may find out.  I curious can you be Stage IIb with node involvement?  It's been a while I don't remember for sure. But I thought nodes meant Stage III???

     Please remember that Avastin has only been around for about three years.  Many ladies are just find without take this drug. 

    Flalady

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  • FloridaLady
    FloridaLady Member Posts: 2,155
    edited January 2009

    I NEED TO SHARE MY GOOD NEWS!

    I will start my fourth month of Ixempra/XelodaThurday.  Remember my doctor and I chose to try low dose 3X on and 1X off. Well...It worked even with the low dose.  I have had a complete response in the skin.  The two small solid tumors in my skin are now gone also.  Next month I will have a PET scan to stage me again.  I hope the three nodes near my lung and liver are also gone.

    My main concern is that we may have to stop after four months instead of going to six months as recommended due to my neuropathy.  I hope we are not stopping to soon...

    A note about low dose Ixempra.  I kept 85% of my hair.  The fatigue is can be tough if you don't get you nap.  I have not had to do any blood shots.  My hands/feet are just showing signs from Xeloda.  All managable and I'm back to working full time.

    God is Good!

    Flalady

    PS I forgot to note...I can longer feel the nodes in my neck either!!!

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  • VickiG
    VickiG Member Posts: 536
    edited January 2009

    FlaLady that is AWESOME!!!!!!!  I am so thrilled for you ~ Ixempra/Xeloda did absolutely nothing for me, so I am tickled pink (ok, that's pbly not the best saying to use under the circumstances!!!) that you have had such an incredible response.  I just told dh & he's also excited for you ~ we all definitely need to celebrate each others' victories, big or small... and this one is HUGE!  Woohoo to you!

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  • ibcspouse
    ibcspouse Member Posts: 613
    edited January 2009

    Flalady,  I wish I could type well enough to tell you how happy I am for you.   You are still my hero.  (can't spell heroine)

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  • TenderIsOurMight
    TenderIsOurMight Member Posts: 4,493
    edited January 2009
    Ah, so very wonderful, Flalady.
     
    Your news lights our way in this often seemingly dim path at times. I'm so very happy for your response. I'm also happy your oncologist was willing to pursue this route and is encouraged by low dose therapy response and wonder if he'll share it within the oncology world for more to read of. 
     
    Here is an article from 2002 on metronomic (low-dose) chemotherapy:
     
    Could Less be More? Low-Dose Chemotherapy Goes on Trial
    Ken Garber 
     
     
    Happy New Year to you!Smile
     
    Tender 
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  • bourscheid
    bourscheid Member Posts: 718
    edited January 2009

    Haven't posted in a while here.  Glad you are having good response flalady!

    I get results on Thurs. of my first PET since starting chemo in Oct.  Am doing abraxane/avastin.  Hoping for a good response!

    Happy New Year TN ladies!

    Lori

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  • Youwearpink
    Youwearpink Member Posts: 87
    edited January 2009

    Hello All,

    Marshabel,

    I have had cysts turn out to be in fact cysts. I had a MRI guided needle biopsy and was relieved to find it was negative!!!1 I have had so so so so so so so many scares!  I had MRI's showing Bone mets, CT's showing lung Mets, Mammo's showing suspicious areas......let me tell ya ladies, I was convinced every time it was a met, but I was relieved to find out EACH time I was in the clear.  I am a 6 in a half year TRI NEG Survivor..

    bourscheid, I will say a prayer for you!!!!! I bet your results are great!

    Flalady, I am sooooooo happy to hear your good news!!!!!  You deserve it!

    Karen, I just finished my Ice Cream. Love it, Can't live without it!!  : - )  What king of free flap did you have?

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  • glostagirl
    glostagirl Member Posts: 388
    edited January 2009

    I have a recurrence just 5 (barely) months out of tx!  I've delayed posting this info as I've been in shock and truly did not want to scare anyone with this bad news.  However, it seems to me that TN's need to get info out to others and so that's why I'm sharing my experience.

    DX 1/04/08 (see below for specifics)  Lumpectomy 02/08, A/C x 4  ending 05/30/08, Rads x 33 07-08/08. 

    I had a good surgery with, what my surgeon described as, very clean margins.  Typical but not excessive issues with chemo and no problems with rads.

    I had several thorough breast exams with rad. onc. and PCP,  through late October, nothing out of the ordinary, although I was still swollen and a little numb from tx.  In early December I began to notice that the swelling and numbness was beginning to subside enough to do thorough self exams and I felt a small lump, interestingly, it was somewhat sore and became more so as the month wore on (they say that bc typically isn't sore...hmmm).  I already had follow up appointments scheduled at the end of the month and decided to stick with that schedule. 

    Well, long story short, after my gyn confirmed that she too felt a lump, in I went for a diagnostic mammogram & u/s, yup, there's definitely a lump, next biopsy, got the results and it's back.  IDC, .8 cm, poorly differentiated cells.  Give or take a day or two, it's a year since my original diagnosis.  I'm totally in shock and don't like what I know comes next.  

    I've read all your posts, thank you all for continuing this thread.  As difficult as it all is, we're not alone and we can keep fighting.  From all you've written I've got some good info and questions for my surgeon and oncs.  They won't know what hit 'um!!!

    The moral of the story, don't take anything for granted, keep up the vigil on your own body!

     Glostagirl  

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  • FloridaLady
    FloridaLady Member Posts: 2,155
    edited January 2009

    Thank you all for understanding what this means to me.Smile

    Glastagirl,

    Hang in there.  You have a great chance of beating this.  The key...you can still do a mastectomy.  This is a big PLUS. Getting the tumor out with a larger area of margin and trying some of the new chemo combo you have a great chance of beating this your second time around.

    Flalady

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  • FloridaLady
    FloridaLady Member Posts: 2,155
    edited January 2009

    VickG,

    I still believe we may both be labeled triple neg....but we have to different kind's of diseases.  I hope one day they can truly find out what our receptors.

    I hope you are doing well. Let me know when you make it through my neck of the woods.

    Flalady

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  • glostagirl
    glostagirl Member Posts: 388
    edited January 2009

    Thanks Flalady.  I did recently read that bc patients do not die from tumors in the breast only (so far so good on that end), which is comforting.  Thank you also for the info regarding the low dose lxempra, I'll be asking my onc about it for sure! 

    Marshabel, regarding cysts, prior to mammo & u/s my new lump was thought to be a cyst because it was painful.  After biopsy, it did turn out to be a small IDC tumor, close to the original tumor site.  It did show up on both mammo & u/s as a solid mass.  I'm at my 1 year anniversary of original dx as well. 

    Wyojan, we seem to be in the same boat, with agressive TN.  Good luck.

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  • tibet
    tibet Member Posts: 545
    edited January 2009

    Glostagirl

    your second tumor I think is a new primary not a recurrence because it is not related to the first tumor. Right?

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  • glostagirl
    glostagirl Member Posts: 388
    edited January 2009
    Good question newalex,  I'm only a few days into this, the dx so far is the same as the original and close to the original site.  I'm waiting for a call back from my onc. for more of the specifics.
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  • FloridaLady
    FloridaLady Member Posts: 2,155
    edited January 2009

    If it is the same kind of bc as before... and since it is so close to your original dx.  Also same area...You probably considered a recurrence. 

    A new primary usally means it's been years since dx or your receptor has changed.  In other words a different kind of bc.

    glastagirl - I hope your doctor will let you use Ixempra.  It is consider and later stage treatment.  But I meet a girl this week that is using it with early stage aggressive disease.  Also I did have luck with Carbo/Gemzar & Avastin after failure with ACT. I've had three years of chestwall only disease.  It can be tough after you can no longer do any surgery to cut it out. I've done nine different chemos and over 45+ tx in three years.  I hope you can have surgery and just the perfect chemo right off the bat.  I'm considered chemo resistant so you can go by me.

    Flalady

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  • glostagirl
    glostagirl Member Posts: 388
    edited January 2009

    Thanks again Flalady, you sure have been through a lot in just 3 years. 

    I just spoke with my onc. nurse and I won't know if it's a True Local Recurrence  TR or a New Primary  NP, until after surgery. 

     Apparently the difference is important to accurately predict the prognosis.

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  • bourscheid
    bourscheid Member Posts: 718
    edited January 2009

      Just got back from the onc and got the results of the latest PET scan...Great news ladies!

    As you know, the original diagnosis showed cancer had spread in most if not all the nodes of the chest and supraclavical (collar bone) area as well as multiple (at least 7) lesions (tumors) in the liver - two of which were 8cm or larger. There was also some plural effusion and possible spinal lesions.  Well... all of the cancer is GONE except for one small (2 cm) area in the liver!!!!!  We are overjoyed (including the onc)!  Dr. M said the response was way better than he had dared to hope for! 

     I will now go for two more cycles of abraxane/avastin (6 tx) the first of which I had today.  After that we will rescan and decide on what if any further treatment is needed.

    Have a great afternoon!

    Lori

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  • Youwearpink
    Youwearpink Member Posts: 87
    edited January 2009

    I AM SO HAPPY TO HEAR YOUR NEWS!!!!!!! CELEBRATE!!!!

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  • FloridaLady
    FloridaLady Member Posts: 2,155
    edited January 2009

    I just love great news...bourscheid so happy for you. 

    Flalady

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  • bar62
    bar62 Member Posts: 321
    edited June 2009

    Evening everyone here,

    I amy have posted here last year and if I did I'm sorry I can't keep up. However, I'm sharing here...I know you probably know about the new advances in medicines because we all are anxious to find help. I don't get around the boards much but am happy to be here tonight. I pretty much post on my chemo 9/08 group and have made them my home group.

     I am anxious since I had an interupption in my chemo due to insurance  problems but am hopeful we will have the followup pill v.v.v. soon.

    anyway, here tis

    http://www.webmd.com/breast-cancer/news/20090602/new-drug-for-hard-to-treat-breast-cancer

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