Where are the tri-negs!

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  • bombus
    bombus Member Posts: 20
    edited March 2009

    hi another triple negative here. I am only just now starting to figure out what that means.

    I had a lumpectomy on march 12th and will be starting chemotherapy sometime in the next few weeks.  I am very lucky that I have a lot of caring friends and a boyfriend of 18 years  who is also very supportive. I plan on making it through this but I am scared anyway. 

  • bourscheid
    bourscheid Member Posts: 718
    edited March 2009

    Kathygolf,

    I had the same thing happen with my port.  I went 5 tx without being able to draw blood (had to use my arm) and this last time for some reason it worked like a charm again. The chemo nurse said they do this sometimes. It is the internal catheter creating a suction along the vein/artery and not a cause for worry.  You can still get infusions and sometimes that helps indo the suction. Just means getting stuck in the arm. Come to think of it, I did trip a few days before and caught myself with my port arm.  It ached for a couple of days then when I went for my blood work the port worked.  Maybe it jarred the suction loose?  Who knows. 

    bombus, welcome to the club you didn't want to join.  I know you are scared but you can do this !  We'll help you through! What chemo are you getting?

  • Carole5252
    Carole5252 Member Posts: 4
    edited March 2009

     At  almost 57 I am almost  a   6 year  triple neg survivor  with no  recurrences to date... no nodes, big hi grade tumor and so I  had  AC and Taxol and bilateral mastec  and oophorectomy  due to Braca2-   but when is it  a suspicious bone cancer  and not arthritis?  But I just noticed some   shoulder pain at the very top / front area.. so when is it bone cancer. ?  it   happened twice  today and then  it went away.

    P.S.  My mother had bc in 1957 and died  in 1960... grew up without her... i feel thankful for the aggressive treatment.  i received ... I got it at 50 - she got it at 40...  since hers went to bones and brain , i am always worried about it...  sometimes  it is  hard to appreciate my good fortune  with   a triple neg history..  and  parental history as well..

  • Luv2sing
    Luv2sing Member Posts: 145
    edited April 2009

    floridalady - I know I'm late in reading this post Smile, but the condition you were referring to is called constochronditis.  Some people mistake it for heart attack.

    They had postponed my 2nd tx until tomorrow ... it seems I did not do very well after the first one and am still not 100%, but I didn't want to delay the tx any longer.  She did a thorough exam and agreed I could go ahead with the tx.  So I've just taken my Dex, sitting here with my big water bottle and feeling like a Puffer Fish. 

    Okay, what's the good stuff for constipation?  I eat plenty of fiber, drink plenty of water and other juices.  I've already tried colace w/dulcolax and miralax, neither worked .... recommendations anyone?

  • Ricki13
    Ricki13 Member Posts: 80
    edited April 2009

    Luv2Sing - a handful of dried apricots works for me everytime!

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

    For constipation...SenkotS with stool softener.  You can get it any where.

    Flalady

  • Luv2sing
    Luv2sing Member Posts: 145
    edited April 2009

    Thanks everyone for the 'relief' suggestions, I'm going to finish the miralax, go out and buy some prunes and senokot!!!

  • liz19
    liz19 Member Posts: 97
    edited April 2009

    Hello Ladies;

    I haven;t wrote lately , i had my physical a week ago and all test and mammo came back normal, thank the Lord for that Smile  i hope the best for all of you ladies too!!!  take care, Jesus will be with you all always and with me too :)                 HAVE A GOOD NITE

                                                                               LIZ
     

  • Gorilla12
    Gorilla12 Member Posts: 63
    edited April 2009

    Hi Everyone,

    4 year survivor here - just had mammo - came back clear yeah!!! I feel healthy for the first time in a long time!!!

     Best to everyone!! 

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

    Great news ladies and thank you for sharing it with us!

    Flalady

  • liz19
    liz19 Member Posts: 97
    edited April 2009

    Hello Ladies;

    HAPPY EASTER, thanks fla. lady , i was so happy to get good reports for my mammo, bloodwork, and my pap this year, i am a 1 yr survivor ,i hope and pray for many more  for me and all you good ladies too, i will keep in touch with you all, have a great weekend!!!!!

                                                                             LIZ19
     

  • g94u67
    g94u67 Member Posts: 436
    edited April 2009

    Great news to hear TN girlfriends,

    Happy Easter!

    Jeannine

  • deb6563
    deb6563 Member Posts: 179
    edited April 2009

    I am triple negative.  Really didn't know that it was rare and very hard to treat until I joined this group.  I start chemo next month.

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

    Welcome deb6563 to our little group.  Have they decide on your chemo yet? I hope treatment will be gentle on you.

    Flalady

  • liven42day
    liven42day Member Posts: 76
    edited April 2009

    Hi Kids (TN Ladies),

    I am around now and then, but got hit with some crap news this week, waiting now for results.

    I went in for bi-lateral mammos Wednseday and they sent me for an immediate ultrasound that lasted 45 minutes, then on to a chest xray. Now I wait for an answer till next Wednesday, all I have been told is there are abnormal changes since last mammo in October 08. Praying to be still NED, am I ungrateful for the last 14 months NED? No, just would like more cancer free time, like all of us bc ladies.

    Take Care Ladies

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

    liven,

    I hope all this confusion is for nothing.  I'm saying a pray for you that you will continue to be NEDS!

    Flalaldy

  • NanaOfTen
    NanaOfTen Member Posts: 191
    edited April 2009

    liven, my thoughts and prayers are with you as you wait again for more NED results.

    Cheryl

  • deb6563
    deb6563 Member Posts: 179
    edited April 2009

    I start my chemo on May 11  I will do dd A/C x 4  then toxol x12 then radiation for 6  weeks.  During that I will be in a clinical trial.

  • g94u67
    g94u67 Member Posts: 436
    edited April 2009

    I'm saying a prayer for you Liven. 

    Question:  Did you have a lumpectomy previously?

  • liven42day
    liven42day Member Posts: 76
    edited April 2009

    Hi TN Ladies,

    Yes, I had lumpectomy the first time, excisional biopsy, then they went in again to get clear margins and 7 nodes. I had lymphatic invasion also, didn't understand what that meant then, I better understand it now. If the tumor had a blood supply why wouldn't it get into my blood stream throughout my body.

    Thank you for the prayers, your all in mine also.

    I received a letter from the mammo center today, it states, "your recent mammography examination showed an area that we believe is benign (not cancer). However, in six months you should have a follow up mammogram to confirm that this area has not changed."

    What? I wanted my breast removed when I found out I was trip neg the first time, sure this could be nothing now, in six months it could easily be cancer. Has anyone else had anything similar happen and the surgeon removed the breast before "the area" becomes cancer? I want a bilateral, I am so upset by this crap and grey areas..... I will look for more information on the boards, sorry to rattle on.

    Take Care Charlene

  • Debonthelake
    Debonthelake Member Posts: 244
    edited April 2009

    Well, I'm just joining this little club.  My stats are posted so I don't need to go into that.  I'm just now completing my 6 round of TIC chemo.  It wasn't too bad.  Fatigue and nausea.  Some allergic reactions which were controlled with benadryl and solumedrol dose packs.  The solumedrol helped a lot with the nausea too.  I'll be glad when food taste right again, but I can eat and weight has stayed pretty stable.  I've been able to exercise some and I've worked part- time two out of three weeks.  I haven't experienced any pain to speak of.  I begin my 33 rounds of radiation in the middle of May.  Going to see the radiologist was like going to see Santa Claus.  I was so excited to get away from chemo and be this close to the end of treatment.  Burning my boob just doesn't sound so bad. This rare diagnosis is, well scary.  I'm sure I'll hold my breath with each Mammogram.  Perhaps I'll start to relax when I reach my 3 year anniversary.  That's to good news.  They'll pronounce us cured faster than with other breast cancers.

  • Debonthelake
    Debonthelake Member Posts: 244
    edited April 2009

    Have they tested you for BRACCA yet?  If it is positive and all triple negatives are good canidates for this testing the insurance will pay for bilateral masectomy.  If it is negative I'm told you are only slightly more likely than the general population to develop breast cancer again.  At least that is what I was told.  My BRACCA was negative.  I was happy not to have the hysterectomy and bilateral ahead of me.  But, there is still a small part of me that would feel safer with all of it gone.  I guess in time I'll get over that feeling.  Monday is my 6 month mammogram since all of this started.  They aren't the relaxed thing that they used to be.  I'll pray for you and I know you'll do the same for me.

  • VickiG
    VickiG Member Posts: 536
    edited April 2009

    Charlene I would be upset as well... just because they "believe it is benign" (which hopefully it is!) doesn't do much to give you that peace of mind... I'd be in w/ my breast surgeon in a heartbeat.

  • Luv2sing
    Luv2sing Member Posts: 145
    edited April 2009

    Debonthelake & Everyone - Just an FYI regarding insurance coverage for the BRCA testing. 

    I spoke with some insurance carriers and they are all saying they each have different criteria, but ovreall they agree you need to have immediate family members who have had breast or cervical cancer as well as the TN diagnosis to be covered.  The good thing is they will accept the sample, but the test will not be done until the company finds out if it's covered and then they send you 'statement' letting you know the cost, so you can make the decision if you want to proceed.  My onc mentioned there is a facility that will test for free but it takes months for the results to come back.  Just thought I'd mention that ... also if you know the code your doctor uses to submit the claim the insurance company can tell you over the phone if they will cover the test.

  • rinna40
    rinna40 Member Posts: 357
    edited April 2009

    hello fellow tripple negatives

     Could anyone tell me what the usual chemo regimen is for tipple negatives? I live in Canada and some of your short forms don't seem to make sence to me. I've been told that I will have three doses of a combination of 5-FU, Epirubicin and Cyclophosphanide. Then I will have three doses of Docetaxel. Does this sound familiar to anyone? Also, does anyone know where I could get some reliable info about tripple negative breast cancer? Thanks. 

  • TorchSong
    TorchSong Member Posts: 348
    edited April 2009

    Hi Rinna! Sorry you're having to join this team, but you have come to the right place!

    I'm in Windsor, and I had almost exactly that regimen--I had Taxotere, which is related to docetaxol, butotherwise the same. The combination is often abbreviated FEC.

    There's a website specifically on TN (Triple Negative) bc: www.tribcfoundation.org. They've got a lot of good information.

    Also, there are several women here who know tons and I'm sure one of them will be along soon and can answer an specific questions yo might have.

    And, I am one week--6 treatments--away from finishing rads. 

    Then what do I do?

    I hadn't thought I'd feel this way--that I'd just be relieved to be done--but now I'm realising that I've done what I can do and the rest is waiting...for that 3 year mark and then the 5 year.  Have I mentioned that I'm not very patient? 

    Hope everyone's treatment is going well!

    Hugs

    Martha

  • NanaOfTen
    NanaOfTen Member Posts: 191
    edited April 2009

    Hi Rinna,

    Sorry, too, that you have to join us.

    I have been on taxol (known as paclitaxel) - will have a total of 4 treatments three weeks apart (last one is this coming Monday); then will have Adriamycin (trade name for Doxorubicin) and Cyoxin (also known as Cyclophosphanide) together for 4 treatments 3 weeks apart.

    Docetaxel and paclitaxel are both taxanes. I don't know what the difference is. I know I have a bit of problem with the side effects with the taxol.

    The one medicine you mentioned, Epirubicin, is new to me. Then again, this is all rather new to me. My doc has me on the adriamycin in place of that.

    Hopefully, someone will provide you with better answers - we all can learn more.

    God speed,

    C

  • Debonthelake
    Debonthelake Member Posts: 244
    edited April 2009

    Hi Rinna40,

    Sorry you have to join us.  It's such a scarry diagnosis.  My chemo regimen is Taxotere also known as docetaxel and paraplatin also known as carboplatin; given intraveniously once every 3 weeks for 4-6 sessions.  The Oncologist says if one can tolerate it, the extra two sessions raise effectiveness by 10 percent.  Monday is my last chemo session.  Yeah!.  The middle of May I start my post lumpectomy radiation.  I'll have to have 33 sessions of that, 5 days a week until the sessions are complete.  Medications do seem to vary a lot.  But, either Taxol or Taxotere seem to be a common denomiator.  I've also noticed the the way the chemo is given seems to vary.  I got both of my chemo's simulataneously and others seem to take one at a time. I'm receiving my treatment in Nashville, TN.

    Torch song, I know how you feel.  I'm excited to be starting the radiation so that treatment will be behind me but then the pure faith part of the journey begins.  I guess I'll pour myself into healthy eating, vigorous exercise and prayer.  Other than that I will have fought the fight and the rest is up to acceptance.  That part of the prayer,  Lord, give me the serenity to accept the things I can not change is the hardest part.  It feels better to be fighting even if chemo is an unpleasant way to fight. I guess that's why we pray for the serenity.  It's certainly not something I'll be able to manufacture on my own.

    God be with all of us.

    D

  • rinna40
    rinna40 Member Posts: 357
    edited April 2009

    Rinna here - thanks to the ladies that wrote back re:treatment for 3negs. I had an appointment with my oc today, and he actually wrote out the comparisons to other drugs that I have seen mentioned here. It seems that my drugs are related to A/C and taxol ... He indicated that the regime he has me on is the strongest chemo combination, and that he is using it because of my relatively young age (40). I feel better now that we've had the conversation. Now I'm concerned because my lumpectomy opened and we are waiting for it to heal before I can start chemo. My new question is: Does anyone know when after surgery most ladies start their chemo?

    keep the thoughts positive!!!!!

  • Luv2sing
    Luv2sing Member Posts: 145
    edited April 2009

    Hi Rinna40 - I had my surgery Feb 6th (my port was inserted at that time), met with my onc Feb. 21st and started chemo the first week in March.  I'm on A/C x 4, Taxol x 8 and then daily rads for 8 weeks.  I'm also having a BRCA test done which may or may not alter my tx depending upon the results.  I'm coming up on tx #3 tomorrow and if you don't count the SEs, everything's going good.

    BTW - I'm also on the discussion board at TNBC and it is a wonderful site designed specifically for TN.  It is a wealth of information, support and encouragement (just like this site), but it's focus is for us TN folks. 

    I wish you well in your journey.

    Raymon 

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