Triple Negative- anything positive?

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  • Clowngirl
    Clowngirl Member Posts: 43
    edited May 2012

    It was great talking to you as well, Tracie.  I also connected to the tn group on facebook. I still get scared when I read "searching for a successful treatment" for triple negative. That actually scares me to bits! Still struggling with anxiety so bad that I am still immobilized by it. Thursday is surgery so at least I won't be just waiting for the next step. Joanne, thank you for your kind words. It encourages me so much. Maureen, did you have mastectomy? If so, when?  Thanks so much everyone. My last clown gig is today and I can hardly function with the upset stomach. I can relax a bit after it's over. Hugs to you all.

    Sally 

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  • mb1024
    mb1024 Member Posts: 49
    edited May 2012

    Sally, I had a lumpectomy with 9 nodes taken out - 1 was positive.  It was done on April 9.  My diagnosis was March 9, my surgery was April 9, and now my first chemo will be May 9.  

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  • tracie23
    tracie23 Member Posts: 598
    edited May 2012

    mb1024 , did they tell you what chemo you will have first?

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  • mb1024
    mb1024 Member Posts: 49
    edited May 2012

    Yes, Tracie, I'm getting AC first.  I just checked the shopping list for chemo thread, and I'm nowhere near ready.

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  • tracie23
    tracie23 Member Posts: 598
    edited May 2012

    I had told Sally, Ask for Emend it is a great anti nausea that goes along with all the other anti nausea pills they will give you. I felt bad for about 3 days and than I was good to go until the next one...but the Emend was the answer for me

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  • Titan
    Titan Member Posts: 2,956
    edited May 2012

    Clowngirl...have you tried going for a walk?  I get you when you talk about the stomach issues...stress does this to us....and we are under alot of it....I often wanted to just shut by brain down because my bc was all I could think of...I hope it gets better for you.....maybe your doctor can give you something to settle your stomach? 

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  • Clowngirl
    Clowngirl Member Posts: 43
    edited May 2012

    Titan, I have tried to walk and it seems to help. I worked this passed weekend (clowning for 3 birthday parties). How I made it through I just don't know. But there are no more gigs up to surgery day (Thursday) so I'm trying to do all I can to stay calm. I visited my best friend today and we had a good cry. Breakfast with clown friends tomorrow, Reiki and a hair cut on Wednesday. Stomach is a wee bit better today but I find the ativan is actually helping to settle the nerves enough to keep the stomach in check. I just had to increase the dose. Please remind me of the Emend when it comes time for me to start Chemo. I hope I get to meet the chemo docs soon. I just want to get on with it all. Thanks for listening to me and being a comfort to me.

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  • kelleysgroi
    kelleysgroi Member Posts: 227
    edited May 2012

    clowngirl- hoping your surgery went well.  I am thinking of you!

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  • Clowngirl
    Clowngirl Member Posts: 43
    edited May 2012

    I am home from my bilateral mastectomy. Very tired. My lymph nodes were negative! Good news. But I am still triple negative, micropapillary and all that that means is still in my head. I find out my path reports this friday. I am still dealing with depression and anxiety. I had a massive anxiety attach Saturday morning in the hospital. Sobbing uncontrollably, couldn't breath, shaking like a leaf.  I need strength going forward. Right now, I'm just overwhelmed. 

    Sally 

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  • CharB22
    CharB22 Member Posts: 310
    edited May 2012

    Congrats on the node negative status, Clowngirl. That's awesome!!! That's HUGE! You've made it through the mastectomy, too. I only had lumpectomy, so I have no idea how you're managing, but you did it!!

    Wishing you strength and peace every day! (((HUGS)))

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  • Clowngirl
    Clowngirl Member Posts: 43
    edited June 2012

    My MO gave me EMEND and a bunch of other anti-nausea prescriptions. I start on June 19th. I'm still very scared. Traci, I know you asked me to watch the mail? But I never got anything. Just wanted to let you know in case you DID send something and were wondering. 

    You've been a great support to me. Thank you, so much!

    Sally 

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  • kellycbk
    kellycbk Member Posts: 31
    edited June 2012

    hello everyone, i'm new to this thread but hope to encourage you and help if I possibly can. (i finished chemo in Sept. 2010 after bilateral mast. surgery in Mar. 2010. )

    clowngirl you stay strong and it is ok to be scared!! follow what the doctors tell you but don't be afraid to complain if things don't go smooth for you. nothing worked for my nausea until we tried a patch(not sure what it was called) but it made my last 2 treatments of AC/CY managable. Hang in there, the sooner you get started the sooner you get finished!!!

    mb1024 hope your treatments are going ok and wishing you well.

    I will be thinking of you all as you continue on this path.

    Kelly

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  • Clowngirl
    Clowngirl Member Posts: 43
    edited June 2012

    Thank you, Kelly. Looks like our paths are similar. I SO appreciate any help through this next step. I want to be courageous but I'm weak in the legs and trembling most days. I will probably be here on this topic every day, if I'm up to it. I was told that the day after each chemo, I have to go in to get a Neulasta shot. I've heard some horror stories about the bone pain. I have a friend that told me it was worse than the chemo! Any thoughts on how to manage this? What's worked for all of you?

    Sally 

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  • kellycbk
    kellycbk Member Posts: 31
    edited June 2012

    Clowngirl- I had the shot also. I don't know if I was just lucky but it didn't bother me at all.  I suffered from INTENSE nausea almose immediately following my chemo when I was on the AD/CY to the point of loosing about 10 pounds in under a week. I would encourage you to have multiple things to drink. Liquids was stressed more than food!!! Remember to discuss what antinausea meds to take and when!!!! It was overwhelming for me --all the pills because I never take anything.

    Everyone reacts differently to everything and all I can say is try to enjoy the next few days as much as you can and do things that will keep chemo out of your mind as much as possible. Enjoy your family and remember Chemo does not last forever (sometimes it may seem like it) but there is an end!!

    Feel free to drop me a PM anytime if you want.

    Kelly

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  • SusannahW
    SusannahW Member Posts: 470
    edited June 2012

    Clowngirll-following your thread, how are you doing with chemo? I'm almost halfway

    through radiation, can't wait to be done. Please let us know how you are doing.



    Susannah

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  • Clowngirl
    Clowngirl Member Posts: 43
    edited July 2012

    Sorry it took so long to reply. I'm on day 13 of my 1st chemo.  My wbc bottomed out on day 7. UGH! it was 500! I could barely lift my head up for several days. I feel much right now but chemo begins again tomorrow (as long as my numbers are back up). I didn't have much trouble with the Neulasta shot. Yesterday my hair began falling out. Surprised it was so quick. :0(   I'm going to have my hair dresser shave me a mohawk, spray it pink, take lots of pictures and then let her shave the rest. Got to make it an event.  How is every one doing? 

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  • FernMF
    FernMF Member Posts: 349
    edited July 2012

    THANKS ALL - - I go to see the ONCO tomorrow - 1st visit, but have "learned" more than I want to know from many not-positive places. . . I am concerned about TNBC . . . I had bi-lateral mastectomy to decrease chance of recurrence.  My sentinel node was negative during surgery but an 0.83 mm IDC showed up in the pathoogy there . . . I am curious about everyone's choice of chemotherapy and/or holistic type approaches AND the method of detection for this first couple of years post-surgery . . . THANKS.

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  • bluepearl
    bluepearl Member Posts: 961
    edited July 2012

    Triple negative is trashed by chemo the best. Having a negative Her2 is one of the best prognositic features whatever your hormonal status is. ((((hugs))))

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  • SusannahW
    SusannahW Member Posts: 470
    edited July 2012

    Clowngirl-Sounds like you have a very positive attitude, but sorry to hear about your white blood cell count. The neulasta shot will build you back up.

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  • FernMF
    FernMF Member Posts: 349
    edited July 2012

    I like the ONCOLOGIST - yipee . . . he was all about business, well prepared.  He thinks my "slightly positive" Progesterone reading is a good thing - sending tissue for Oncotype test to see if possible to treat . . . . waiting 2 weeks for result than see him again.  The "numbers" are 15 to 25% chance of recurrence - chemo would lower the chance by 7% . . not sure I want my body trashed by chemo for 7% . . . .

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  • Luah
    Luah Member Posts: 1,541
    edited July 2012
    Hope you'll indulge my pickiness with numbers... But a 7 percentage point reduction (if that's what he meant?) is actually reducing your risk of recurrence (which is currently at 15-25%) by somewhere between 28-46%. That's the difference between 15-25% risk of recurrence and 8-18%. Hope this makes sense, as you consider whether it's worth doing chemo or not. Great that you like the onc, it makes all the difference as you move forward, whatever you choose. 
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  • FernMF
    FernMF Member Posts: 349
    edited July 2012

    Ha ha . . . gotta tell you this story . . . I took the MRE before taking courses in a masters degree program - preparing for that test, I worked through the math portion of the pre-test . . and laughed with my hubby about not knowing (or caring) what "x" or "y" means, and why does math have to be so hard!!!!! After taking the test and passing well through the non-math parts, I received a score interpreted as "dumber than dirt" in math . . . so . . . I said all that to say, I don't know whether the oncologist was saying a 7% reduction in the recurrence risk, meaning from 15-25% risk to 8-18% risk . . . or what you said (my mathematical mind is NOT computing) . . . I'll have to ask him on my next appt on the 19th.  You are correct . . BIIIGGGGGG difference, of course!  SO you are cancer free since 9/2009 - - I like to see stats like that!  I am concerned that the main posting participants on this site are those who are suffering the most and in need of comfort . . which is a wonderful way this site helps us all . . . I would love to see those, like you, who are a few years past diagnosis with no recurrence.  Thanks LUAH!!

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  • BikerLee
    BikerLee Member Posts: 355
    edited July 2012

    this is such an interesting thread, and i'm torn.

    on the one hand, we have the toughest of prognoses... although if our treatments can deliver a complete pathological response, our stats are actually quite good (i'm in this happy place)... if our treatments do not deliver a complete pathological response or we have adjuvant therapy and do not know whether we would have had that response, we do NOT have available long term treatments that can reduce our risk of recurrence.

    on the other hand, we do nothave available long term - and life altering - treatments that can reduce our risk of recurrence. 

    i find the potential heart effects from herceptin treatment FRIGHTENING....  i realize that being an athlete is a privelege, and i hope to get back there.  but i'm grateful to not face the potential for additional heart damage (i had a drop in my heart function with AC).

    i am finding myself GRATEFUL to not be on tamoxifen or other hormone therapies.  i am also finding myself GRATEFUL that i can choose hormone replacement therapy with little indication of increased risk of recurrence etc....  the rapid transition into menopause was HARD...  and hormone replacement has resulted in a dramatic improvement on my outlook in general as well as how my body feels in general.

    i realize that my feeling on this has loads to do with my complete pathological response.  i feel really lucky to have that.  i was in a clinical trial, and the treatment was quite a bit different than what i would have received as standard of care.  would i have had the cpr with standard of care?  i'll never know.  but i did have cpr... 

    so, on the positive side...  i do not have to stay in the menopause caused by my chemotherapy, i did get a complete pathological response (rarer in hormone positive BC), and i do not have to take additional meds for five plus years nor do an additional year of chemotherapy (herceptin).

    so, those are my few cents...

    i would say that i am quite grateful to have been able to enroll in the clinical trial.  i had a few delays getting started (failed core biopsy had to be repeated so that adequate tissue was avialable for analysis)...  but the end result was the pie in the sky for tnbc.

    this is a really interesting thread... thanks to all for contributing!

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  • Zipmum
    Zipmum Member Posts: 16
    edited July 2012

    I am one of those long term survivors. Cancer free since Sep 2009. Did chemo and radiation Thank God i am around to give you hope that it is possible. One of my coworkers told me that his sister is a 15 year survivor. He was the only one that gave me a shred of hope. Praying for you...

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  • netty46
    netty46 Member Posts: 296
    edited July 2012

    Hi I have a local recurrence and the doc said no chemo! Help need advice I was 12 yrs out also had cmf like you

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  • netty46
    netty46 Member Posts: 296
    edited July 2012

    Where were they treated?

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  • Morgan513
    Morgan513 Member Posts: 664
    edited July 2012

    Hi everyone!  I'm so sorry you have to deal with this scary time.  I wanted to just let you know that I'm cancer free since 2008 and working on my 5 year anniversary next April! 

    There are many positives about being TN.  Another member has a blog called Positive about Negatives which is very informative.

    I also work with a woman who had TN breast cancer 20+ years ago and is still cancer free.  She even went on to have a baby post treatment.  That baby is now 20 years old!  

    Good luck,

    Lorrie 

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  • Mumtobe
    Mumtobe Member Posts: 159
    edited August 2012

    Hi All,

     I'm new to this site as of today and am amazed at how informed you all are, i need to get myself more informed so bear with me if I get my terminology wrong. I was diagnosed 7 weeks ago with TN and present in lymph nodes. This diagnosis came when I was 20 weeks pregnant with our first baby. Thank God I am able to receive treatment while pregnant and so far baby & I are doing well. Please pardon my ignorance here but the treatment I am on currently is intravenous (2 syringes of bright red liquid & 2 clear liquids), 4 bouts over 12 wks, and a possible 5th bout to get baby to possible 40wks. Then mastectomy, I am seriously considering a double mastectomy. Then 12 wks of taxols & radiotherapy for approx. 5-6 wks. My goodness it is such a rollercoaster of a journey, the most difficult of my life but also the most rewarding in my faith, have never felt such strength from prayer and that's where I go when I get down days. There are certain tests I cannot have until after baby is born, so far I have had chest xray & abdominal ultrasound which were fine, I assume I will have bone scan after baby is born and please God this pest of a disease will not have spread. I too was told on the day of my diagnosis that my prognosis is 5-10yrs. I refuse to be thrown in as a statistic. I am newly married, have a wonderful husband and a baby to bring up and I refuse point blank to believe that I only have max 10yrs on this earth left in me. While it is in God's hands how long I live, I will live each day as best I can, even going through treatment. My struggles are what pains and aches are normal in pregnancy and what are possibly chemo/cancer related e.g. sometimes I get tender ribs under affected breast & sometimes it feels like my baby is sitting on my ovary which is quite painful and then I wonder have I something on my ovary.....have any of you ladies experienced any aches/pains associated with treatment aside from nausea??

    Much love to all from rainy Ireland :) 

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  • Luah
    Luah Member Posts: 1,541
    edited August 2012

    Mumtobe: I am so sorry you are going through this, especially during a time that should be so joyful, just doesn't seem right. However, it's good to hear your docs have a game plan in place, and so far so good. Please don't listen to anyone who says you have 5-10 years - none of us has an expiry date and it makes me furious that, at the time of diagnosis and without any evidence of mets - that someone would be so irresponsible (and ignorant) to tell you that. Some aches and pains come with chemo, but do check in with your onc (and obstetrician) on it - especially anything unusual, severe or persistent. Wishing minimal side effects for you and a happy healthy baby... 

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  • Mumtobe
    Mumtobe Member Posts: 159
    edited August 2012

    Hi Luah,

    Thanks so much for your reply! I rarely do the 'why me' but there are days when I wonder 'why now'. However I will say feeling my baby kicking brings me such joy and helps me to keep going. I really am so excited and knowing my baby is coming makes the fight that much sweeter. I am beginning to think this 5-10 year mallarkey applies to every type of cancer so I try not to worry too much about it, and reading so many survivors stories on here has given me such strength. Just wondering what further testing is ahead of me. So far I have had a chest xray & abdominal ultrasound. What is the norm after this? Do they do these tests before or after surgery?

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