Anybody stage IV TNBC?

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debbiej
debbiej Member Posts: 72
edited June 2014 in Triple-Negative Breast Cancer

Hi,  I am TNBC stage IV from the get go. Dx in Sept 2012.  Just got my second chemo treatment.  I really wanted to know if there are others with this stage out there and how you are doing and what treatments you have received so far.  I had a lumpectomy and then had a lobe removed from my lung that was found on PET Scan.  It was also breast cancer.  Thus, stage IV.  I am on chemo drug called Taxol once a week right now.  My hair has not started to fall yet but I'm sure it will this week.  Then off to the wig shop I go.  I will start 2nd round of chemo the next three months with three drugs mixed together, they are intials ACF.  Guess that round will be much rougher on me.  So far I'm just dealing with fatigue.  I did not sleep a wink last night though.  Guess it was the steriods.  This did not happen the first time.  Is this going to happen all the time now?  I read a book all night long waiting for sleep to come.  Had to get up and take my son to school and have been up since.  Wierd!  Please let me know what you are going through, and thanks in advance, this has been a great help to me so far.  You all are the best!  Hugs, Debbie

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  • marywh
    marywh Member Posts: 2,280
    edited January 2013

    Hi Debbie, glad your chemo is going Ok. As for the sleep issues it probably is from the steroids, I had to ask for sleeping pills for those days. Was put on ambien which works well for me, but some people dont like them. I hated the side effects from the steroids worse than the chemo itself.

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  • Marcijos
    Marcijos Member Posts: 10
    edited January 2013

    I was dx as a Stage IV from the beginning as well. Dx in Dec 2012. I have a few small spots on my pelvis and sacrum and T spine. also my collarbone lymph nodes were positive. I've had 2 chemo treatments so far.. I'm on Gemzar and Carboplatin. Same deal with the steroids. I can't sleep without sleeping pills on chemo days! Good luck to you :)

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  • OBXK
    OBXK Member Posts: 791
    edited February 2013

    Hi Debbie, I was dx Stage IV in Oct. Liver and chest node mets. I have had 4 cycles of gemzar/carbo. When I was scanned after 3 treatments, my liver mets were regressing.

    I take Ativan to sleep. I hope your treatment works well and is manageable.

    Take good care, Karen

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  • 11tyBillion
    11tyBillion Member Posts: 96
    edited February 2013

    Totally freaking out.  I am 2 months past my 3 year "all clear", with TN IBC, and I will be damned if 3 weeks ago, on a fluke, a chest x-ray picked up something "abnormal" in my lung, which was biopsied a week ago -- and it is BC again.  For the back story of what happened to lead me to have the x-ray, just do a search my my user name for my last posts.  Up until the week after I had that xray and got the "something is wrong news" i had had not one pain or twinge that anything was up. I was still going to the gym, cycling, yoga 2 times a week etc. etc.  It is like a firework suddenly went off on my insides.  

    Yesterday I learned mets to liver and lungs.  having PET and CT tomorrow to see jsut where else this has gone.  For 3 years I have gone to the gym 3-4 times a week, kept my fat low, you name it.  I thinkperhapes those life style change salone may have been the things that allowed me to put off recurrence for so long ( as TN tends to come back rather rapidly many times).

    My Onc. has been of the "wait and see" background - which I can kind of understand - because a lot of the tests can give you false positives, AND most cannot see things less tham 1 cm.  They watch the bloodwork like a hawk, and any change there would I guess indicate an internal chage.  BUT, with me, all my blood labs have been normal.  I even heard him say yesterday that my blood labs were compltely fine and normal.

    sorry.  rambling.  

    Port gets put in later this week, chemo starts on Monday.  Onc wants to start with Navelbine.  Any other Stage 4 Tn's out here that can give me some inspiration?  I am beyond depressed, crying every chance I get.  I have two young children, and this all is breaking my heart AGAIN.  originally my littles were 2 and 4 ... now they are turning 6 and 8.  After 3 years, I had really "mended" my previous breaks form the first diagnosis.  Now I feel as though everything has been shattered again.  Every ache and pain I have now (seems like a ton of things have started to "bark" over the past week).  

    I have been living on Xanax for the past 2 weeks or so.  Onc. prescribed an antidepressant and I will be gettign it this afternoon.  I was holding off telling my parents until I kknew more bec I did not want to call them up and give them a lot of "i dunno" to thier questions.  Now I have the info, and a plan, I can tell them things more clearly.

    can anyone out there offer a hand, as mentally, I feel as though i am falling off a cliff?



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  • Yayme
    Yayme Member Posts: 107
    edited February 2013

    I am so sorry to read about your diagnosis. There is so much out there right now with long term NED experiences with some of the clinical trials...my friend just flew to MD Andrson and is in a TNBC trial using the newest PARP type treatments that seem to work on BRCA positive woman mostly.....is there any way you can get yourself into those trials here? Your Onc might be able to facilitate this, if he can't you can do the footwork to get it going if your interested in going this....it is promising....



    I can send you someofthe trial links if you want.....



    Prayers for you....you will fight...you can do it.....

    Lisa

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  • 11tyBillion
    11tyBillion Member Posts: 96
    edited February 2013

    lelela -- thank you so much for the heads up at MD Anderson!  Logged and noted, and will bring up with Onc. on monday at my appointment!

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  • menan
    menan Member Posts: 37
    edited February 2013

    Hi, I also am TN stage 4. I have IBC so my prognoses was not good when I got a third diagnosis in April 2009, after having been first diagnosed in 2007 but two surgeon said it wasn't IBC. My pathogy report after surgery in September indicated the cancer had broken out of my underarm lymph nodes so it was radiated. I did get a year NED before the cancer returned in the lymphs in my lungs and four spots on my bones.  I am on Gemzar now (3 on 1 off) which is my seventh chemo.  Last check I had no cancer in major organs but it was in the lining of my heart, liver and 4 other body lining sites. 

    @11tyBillion - Hope your appointment was encouraging.  My MO also takes a wait and see attitude.  He also doesn't believe in the blood test because they are wrong so often and just cause anxiety.  Try to get a positive outlook.  Take joy in your children and set goals, like to see them graduate.  I also believe my faith in God has a positive influence on my survival and prayers from strangers can't hurt!


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  • 11tyBillion
    11tyBillion Member Posts: 96
    edited February 2013

    Hi all, just checking in.  We had our appointment at Barnes yesterday, with Dr. Cynthia Ma.  I was touched by how compassionate she is!  She can see when you are struggling, and see when you are being affected by what she says, and she rests her hand on you, and will pat you reassuringly as she talks.  even if she is not talking directly to you, like when she was talking to my husband, or a nurse etc., she would gently pat me.  It was like "i know you are right here listening to all of this, and you are hearing SO much all at once, and it might just be a little much right now, but I am here with you...".  I have never had that experience before with a doctor outside of my midwives, and doula. 

     

    So, anyway, she looked over my records and did the whole exam thing (i get so sick of getting undressed to be looked at) ... and when she saw the two little skin lesions I had, she immediately wanted to biopsy them.  Now just a week or two ago, I had asked my local Onc. at the Breast Center (Not like I am going to just a local small town doc. or anything, this is my Oncologist at the huge Breast Center) if he wanted to biopsy these things, because they might be a different type of growth (er, pr, her status ... idc, ibc, abd, wtf, whatever) than the one they biopsied in my lung nodule, and he was like "no, we should just leave it there so that we can watch it, so we can see if the chemo is working..." i just his thought was that the nodules were an easy way to see externally, what might be happening internally?  I just wanted to make sure that they were to same beast ... dont know if it would really matter, but what if I have TN and some other er/pr/her status thing?   I was a little "let down" that he was not interested in doing a biopsy on them.  Dr. Ma said the the tiny nodule on my neck was atypical, my Onc. has never mentioned it as being atypical.   Are the ones on my chest atypical as well?  sis she just want to biopsy them so that they (Barnes) could have an "in-house" diagnosis, from their own labs, as well?  That would be good science, actually.

     

    anyway, i have now applied for the "Veliparib in Combination With Temozolomide or in Combination With Carboplatin and Paclitaxel Versus Placebo in Subjects With BRCA1 and BRCA2 Mutation" trial.  Dr. Ma REALLY thinks i should be on it since it uses PARPS, and I am TN and BRCA 1+.   It has three different treatment groups, and each group that you can be randomized into contains the PARPS.

     

    The things that really has me stressed about this are 1) regardless of the group we are randomized into, we will have to travel, 6 hours round trip, to St. Louis, every 3 weeks   2) one of the groups (if I am randomized into it) requires that you go to Barnes on Monday to get your labs drawn, meet with the Dr., and take the pill form of drug, then on the Wednesday, go to Barnes and get the chemo.  Yup. we would either have to drive to St. Louis and home (6 hours round trip), once on Monday then turn around and fo back on Wednesday, OR, we will have to get a hotel in St. Louis for three days, every three weeks, and one of those three days (The Tuesday) we should just be sitting around in a hotel (talk about $$$$) waiting to the appointment the next day.  All of this, and we have no family in town to take care of our young children who are in school.  And, regardless, of which group we are in, we would be having to make the 3 hour trip home, immediately on that Wednesday, right after receiving Carboplatin ... right now, considering what I remember about how I felt on AC, I cannot imagine riding in a car for three hours after having Carboplatin (which I am assuming is not an easy chemo?).  My folks live 5 hours away, and my husbands folks live 2 hours away.  If we are able to work something out with them, they will have to come here for 4 days every 3 weeks.

     

    the study could go for a year months .... longer if I respond favorably.  I just do not know if I am up to committing to driving 6 hours + every three weeks?  we asked about Barnes sending the pill form  medication to our center here in town, and doing my blood draws here, and having the info sent to them so that they could tell my blood chemistry before starting the rounds ... but they seem to think it just cannot be done because the lab that needs to be used is the one accredited for the study yadday yadda.

     

    I just dont know what to do.  right now, this is the ONLY way I can get the PARPS, and i think my Onc/s next line of defense after the Navelbine was to go for the platin drugs, which, once you have them, you are no longer elegible for PARPS.

     

    No PARP trials at my Breast Center right now, and i am not about to wait on that...

     

    Has anyone else had to travel like this to take part in a study?  How bad is Carboplatin?

     

    it is all just stressing me out now.  It is not enough that i am going to have to loose my hair again (most likely), and fight tooth and nail for who knows how long for who knows what kind of response, but now I am going to drag my entire family through this too AND take my husband out of work every 3 weeks for 3-4 days for who knows how long?  I just cannot take this all in.  it all makes me feel so out of control, and the ONLY thing I am in control of is whether or not I take a 10mg or 12mg sleeping pill each night.
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  • QuinnCat
    QuinnCat Member Posts: 3,456
    edited February 2013

    llty - I'm brca2, but I do read brca1 posts too.  I found Carboplatin so easy after A/C and Taxol.  I suppose the dose amount might matter, but I received it once a week for 6 weeks and it was "like nothing" compared to the former.  While I can remember how I felt after A/C and Taxol to a "T," I have little memory of any SEs with Carbo.  Also, I drove myself, 85 miles each way, for the Carboplatin portion of chemo.

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  • tortoise
    tortoise Member Posts: 71
    edited March 2013

    Hi, Yes i was diagnosed Stage IV triple neg in Jan.  Am also feeling very, very low.  Is there anyone out there who has survived a decent length of time?

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  • samudra
    samudra Member Posts: 1
    edited March 2013

    My wife has TNBC mets to lungs diagnosed 09/2012. She was originally diagnosed with BC in Sep 2010 and exactly after two years she got it again.  We were told that she will have to be on some kind of chemo or the other for life and the chemo she is on my stop working at some point. She is now trial with Parp Inhibitors.

    Any surviors out there who can share experience of being on chemo long term? Do you get periods where you really don't have to take anything.  Trying to stay very positive as this is not something anyone can control.

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