What Kind of Chemo for Triple Negative

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  • Ricki13
    Ricki13 Member Posts: 80
    edited June 2010

    @Hope-downunder  Hello, was wondering what reason your Onco had give you for 4 x TC?  I did 3 x FEC and 3 x Taxotere last year which I believed to be the best available in Australia so keen to understand more.  You won't hear about it much here as FEC is usually not offered in the US (but is in Canada).

    I am part of the Beatrice trial for Avastin but was randomised to be in the control group.  So I get all the tests, but not the drug.  Not sure why this isn't a blind trial but I knew going in.  Avastin can have some serious side effects, and I got all the bad ones from the chemo I did get, so maybe for me it's a blessing?  No recurrence yet (or ever hopefully!).

    Hope everyone has luck with their chosen treatments.  R xo 

  • thenewme
    thenewme Member Posts: 1,611
    edited June 2010

    Kittycat, sending you good thoughts for your MUGA scan so you can get on with it!  Hopefully it was a technical issue and this one will be great!

    Rsben70 - thinking of you too and sending benign vibes!  Please let us know how you're doing!

  • kittycat
    kittycat Member Posts: 2,144
    edited June 2010

    My MUGA scan came back normal.  I start chemo tomorrow.  Yeah!  I just want to get this started! It was definitely a technical issue. I'm glad my onco sent me to another place!!! 

  • kmartin
    kmartin Member Posts: 78
    edited June 2010

    Hi Hope...

     There is also a site called the Triple Negative Breast Cancer Foundation. I found that site to be helpful, also.

    Kathy

  • riley702
    riley702 Member Posts: 1,600
    edited June 2010

    Way to go, kittycat! Now you can finally get moving on your chemo. That's fantastic news!

  • vbabey
    vbabey Member Posts: 48
    edited June 2010

    After being dx'd with TNBC, 9 cm tumor, immediately started 4 AC every two weeks, was supposed to get 4 rounds of gemzar and taxotere, but onco switched literally last minute (I had to reschedule my appnt as it was too late in the day to start it) to cisplatin/taxotere, (ouch!) every three weeks. Happy to say had complete response before surg, then RADs,  so far, so good...:)

  • njbhwgirl
    njbhwgirl Member Posts: 295
    edited June 2010

    Kittycat: so sorry for your delay...I know how you feel.. you just want to start to  finish....hope it is next week

    workmother: if any help on the wig, I went to several places and ended up with a place called

    girlonthego.com...The owner is a cancer survivor and all her employees either have had cancer or had family member. You send her pictures of yourself and a stylist comes to your  house with lots of options. She cuts and styles the wig and she also gave me my buzz cut.  It was so great not to leave your home as this is an emotional thing.

    I had 2 very good friends with me who helped me decide on the wig. Quite honestly the quality was superb and the fit is great. (well as much as wigs go)..Been wearing one now for a few weeks. Not my favorite thing but I really have no choice.. I am not a scarf/hat type of girl..But to each his own..I know plenty of women who love the scarves and hats.

    If you want any more info, pm me and I will try to help you out

  • kja517
    kja517 Member Posts: 4
    edited June 2010

    My 29 yr. old daughter has invasive ductal carcinoma. Stage 2. (tumour 2.1 cm) grade 3, no lymph node or other organ involvement. Triple negative. She is getting AC q 2 weeks X 4, then T q2 weeks X 4. I am so confused and want the best for my daughter. I have read some of you gals, get radiation. I was under the impression if there was no lymph node involvement you didn't need it. Also I am just really wondering what is the best choice for tnbc. I know there are a lot of variables. Just praying we have the right Dr. and they are making the right decisions, and my daughter responds to this course of therapy. My biggest fear is reoccurance. Any other Moms out there wishing it was them instead of their daughter going through this  :((  Forgot to say, she had Bilaterral mastectomies before chemo.

  • kittycat
    kittycat Member Posts: 2,144
    edited June 2010

    kja517 - Sorry to hear your daughter has joined the TN club.  It's not a club anyone wants to belong in.  My cancer returned in less than a year, so I am having both chemo and radiation.  It really depends.  My sister was stage 2 like your daughter (but was ER positive).  She had a bmx and AC/T chemo.  Best of luck to your daughter.  Tell her she's welcome to talk to us anytime! 

  • kja517
    kja517 Member Posts: 4
    edited June 2010

    Thank you kitycat. So sorry your cancer returned. You sound like you are staying very positive. I admire all of you sooo much. So, you didn't have any chemo the first time around? Did your Mother or other close relative have cancer? How is your sister doing? I am going to tell my daughter about this site. I am a nurse, and i am always looking for answers. It seems to upset her more to read about TN. She has a 22 month old son, and she is having a very hard time. They have been giving her Lupron shots that have put her into temporary menopause. She and her husband have decided against any more children, so will stop taking. It was making her so emotional and hot flashes etc. I hope noone minds a Mom on here. I just want to read some positive stories for you young women, and my daughter. Prayers for all of you  <3

  • kittycat
    kittycat Member Posts: 2,144
    edited June 2010

    Tell her not to read all the bad stories about TN.  There are a lot of TN survivors on the board!  She has a lot to fight for!!  You are such a good mom to help her find answers and be supportive of her. 

    My mom didn't have BC, but she had a hysterectomy at the age of 29, which reduced her chances of getting bc.  Her oldest half sister had BC.  My dad's grandmother and cousin also had BC. They both survived it.  My dad and grandfather also had cancer. 

  • thenewme
    thenewme Member Posts: 1,611
    edited July 2010

    Hi Kittycat,

    Just checking in to say I'm thinking of you and see how you're doing with chemo!   Check in when you feel up to it - hopefully you're doing well!

  • kittycat
    kittycat Member Posts: 2,144
    edited July 2010

    Hi thenewme!  I am doing ok so far on chemo.  Just finished my 2nd round on Wednesday and had my hair buzzed off.  I love my new wig.  It looks very much like my hair and even has roots!  LOL!  I hate post chemo days 3-5.  I get sore from the Neulasta shot and fatigued from chemo!  Oh well. 

    Have a wonderful 4th of July everyone!  :)

  • Sugar77
    Sugar77 Member Posts: 2,138
    edited July 2010

    kja517 - I have a friend who was diagnosed with TNBC at age 29.  Nine years later, she is now 38 years old and has since married and had two children.  I saw her last week and she's doing really well. Her stage was 2b.

  • marichai22
    marichai22 Member Posts: 31
    edited August 2010

    Hello,

     I don't know if this is the right place to ask my question and I haven't read all the posts yet but I'll give it a try.My mom is in the process of healing from the recent debribment and is hooked up to a Wound VAC which seems to be doing wonders. We just saw the oncologist yesterday and I'm very confused by what he said. He said my mom did not qualify for radiation, hormonal therapy or Chemotherapy. She didn't qualify for radiation because she has already had the cancer removed (mastectomy). She doesn't qualify for Chemotherapy because her cancer was less than 1cm. He also said she wasn't triple negative (before we met with the oncologist the BS & PS told us both she was triple neg.)but he couldn't be sure because the testing for this was done from the DCIS (noninvasive pre-cancer) and not from the IDC (invasive Cancer). He said the invasive cancer (outside the ducts) was too small a sample to run the test for PR,ER,HER. She was PR, ER - but HER2+. Again he said he wouldn't rely on these findings because it wasn't run from the tissue that was invasive cancer. Yet he said there is a 3% chance that the cancer can spread directly to the blood even though it may not have spread to the lymph node. I don't understand why they wouldn't want to do the chemotherapy just in case? He said something about heart problems and the risks out weighing the benefits. Do you have any insight? He said all they could do is watch for the patient to mention any symptoms like "my bones hurt", etc but if that happens then isn't it too late? We are scheduled to see him in 3 months for mor blood draws to see if her levels have changed. Any suggestions or resources would be great.

    Thank you,

  • kittycat
    kittycat Member Posts: 2,144
    edited August 2010

    marichai22 - did you ask the onco to perform a PETscan?  Also, contact a major cancer center to see if they can review the slides.  Where does she live?  Is it near a major city that has a cancer center?  Can she travel? I made an appt with Sloan Kettering for a 2nd opinion and traveled there to see another onco.  They asked for the slides for their pathologists to review.  From what I've been told, MD Anderson is doing studies on triple negative BC.  You might want to get her a 2nd opinion from another onco in her area.  I did that, as well. My first onco and BS just kept pushing me back and forth.  It was very frustrating.  I can't believe that after a mastectomy, they didn't get a good enough sample.  Find someone else that can give you some answers.  I'm getting treated by the onco in my area, where I asked for a 2nd opinion.  She had the same assessment and treatment plan that Sloan Kettering recommended.

  • onesickboob
    onesickboob Member Posts: 19
    edited August 2010

    I'm glad I found this thread!

    I was originally diagnosed 5/09 and had neoadjuvant 4x taxotere and 4x A/C, with Avastin for the first 5 treatments.  Then came a bi-lateral mastectomy, radiation and reconstruction in April of this year. 

    I found a lump just about my collarbone in June and was diagnosed Stage IV in July.  The cancer is back in my lymph nodes (superclavical and under my left arm, which is the opposite side of my original cancer) and I also have lymphatic dermal invasion, which is a patch of skin rash on my left foob.  I just had my 2nd treatment of Ixempra/Carboplatin yesterday and will continue indefinitely.  I am headed to Duke in a few weeks for a 2nd opinion. 

    Thanks for sharing your stories.  It has been a tough few months and it is good to hear success stories from other TNs.

  • marichai22
    marichai22 Member Posts: 31
    edited August 2010

    Kittycat- Thank you so much for replying. I believe we did ask the Onco if they could do a Scan or MRI something diagnostic like that but he said they wouldn't do it. They would only do it if it had progressed past the breast or something to that effect. The entire answer he gave us was really unsettling. We really don't know if she is ER-,PR-, HER2+ or Triple Negative because he said he couldn't rely on the test they ran on the sample because the sample was taken from the Non-Invasive cancer. The sample for the Invasive cancer was too small to test. There is a cancer center 1 hour away and several bigger cities 1-2 hours away. We may just need to go ask for a second opinion. Can I ask what are the Slides? Is this the actual samples of the tissue they took and can be seen under a microscope?

    Thank You very much-Marichai22

  • Selwynsnow1
    Selwynsnow1 Member Posts: 1
    edited September 2010

    I had a breast reduction to remove the lump, followed by fortnightly AC x 6, then Taxol x 6. Finishing on New Years Eve. Then stepped into daily radiation. Two weeks into treatment a new lump was found near original. Although having a breast reduction can distort original locations. Surgeon felt the new lump was seeded from original core needle biopsy, so removed it and I finished radiation. A routine MRI at end of treatment found more suspicious lumps. Twelve months after first diagnosis I had a mastectomy, followed by later lumps on chest wall. Surgeon believes the new lumps likes the scar tissue from surgery. I've started 3 week cycles(x8) of Gemcitabene and carboplatin. My Onc has said she can judge the chemo's effect at 6 week stage, and that I should expect more lumps to appear at first. I now have lumps in the other breast (in breast reduction scar) and arm pit, so I'm anxious about how long to perservere with this chemo. Right now I'm about to receive 2nd cycle (almost week four of treatment)

  • TiffanyF4
    TiffanyF4 Member Posts: 171
    edited September 2010

    Thenewme  looks like our diagnosis is really similiar.  I recieved 4 TX of Taxotere/cytoxin every 3wks, bmx 40 rads including boots BRCA 1+ Triple Neg.  My biggest fear is a recurrence.  I just don't want to run to the Onc with every ache and pain, but I don't want to miss anything either. My Onc isn't a fan of scan he just told me to go live my life and let him know if I have any symptoms and see him every 6mths. OK I will go do that!

  • Norma57
    Norma57 Member Posts: 12
    edited October 2010

    I am new to the TNBC site.  I was diagnosed with breast cancer 15 years ago, treated at Sloan and had a lumpectomy, 12 lymph nodes removed, radiation and then 5 years of Tamoxifen

    .Did well for those 15 years.  I had a routine MRI and they found a site that was questionable.  I returned to Sloan and decided on a bilateral mastectomy since I was tired of the roller coaster of occasional biopsies throughout those years.  I was diagnosed with TNBC (August 2010) and am now starting chemo.

    I read thru the Boards and notice that everyone is pretty much on the same chemo regime but I am on CMF, dose dense. meaning I get it every 2 weeks in an IV form. Is anyone else using this protocol.  If so, how far into your treatment are you and what are your side effects.  My doctor did give me an Rx for a wig but wonder if I am really going to loose my hair on dose dense. I am also on Neulasta.

    thanks for you help

  • Lovelyface
    Lovelyface Member Posts: 674
    edited October 2010

    Hi Norma57

    I got diagnosed July 20, 2010 with Stage II, invasive ductal carcinoma, 3.3 cm, no nodes involvement, ER-/PR-, HER2- .  I am on AC every two weeks X 4 and then will have Taxol/Neulasta X 4, total 8 weeks.  They refered to mine as dose dense as well.  I wonder why many TNBC do every 3 weeks and why I am doing every 2 weeks.  I am 52 years old, past menopause. I notice kja517's 29 year old daughter doing the same regimen as myself.  Sometimes, I honestly wonder whether the Oncologists have any financial incentives to giving too much chemo.   I hate chemo and I honestly have no idea how in the heaven's name am I gonna get through 8 of these.  I have only done 2 so far, and am so sick of the post chemo feelings. I feel just horrible after each treatment.  I don't even feel like drinking water, water is like poison to me.  I feel like eating food all the time, huge amounts of food, different kinds of food.  Putting on weight.  This morning, I feel an area in my breast kind of hurting.  I had one lumpectomy, another reexcision, and then an infection surgery.

  • chinadollmom
    chinadollmom Member Posts: 13
    edited October 2010

    I'm a little late to the party, but I wanted to say I had the same chemo as you, kittykat (ACx4, Tx4, dose dense.)

    A nurse at the ACS told me that there isn't really a concensus on what chemo to use for triple negative. One oncologist just wanted to give me ACx4 every 3 weeks. Although I was told more chemo is not necessarily better, I went for the most aggressive course. I decided I'd rather pay now than pay later.

    Lovelyface, the nurse at the ACS told me that dose dense appears to be more effective. It is harder on you, though -- toward the end, you feel like you've just barely recovered from the last round when they hit you with the next one. I wasn't feeling too bad after 2 treatments, though (it kind of accumulates as treatment goes on). Are they giving you the good (really expensive) anit-nausea drug? (I believe it was Emend.)

  • TifJ
    TifJ Member Posts: 1,568
    edited October 2010

    Hello all! I just found out I will be receiving 4tx of Taxotere, Cytoxin and carboplatin - not sure what the abbreviations for all that is!! Each tx will be 3 weeks apart. That is all I am getting-no Taxol. Had BMX-node negative so no rads. Has anyone else had this treatment?

  • Cleb
    Cleb Member Posts: 28
    edited October 2010

    On June 19, 09 I had a stereotactic biopsy which revealed a "benign papilloma".  This happened while I was nursing my mother through MX for DCIS with nodal involvement.  One year later I found an insidious lump 2.5 cm 95% IDC 5% DCIS.  I will never forget how the breast navigator described my papilloma laughingly as a freckle.  My butt.  My question is, did the biopsy of my freckle seed the TN IDC.  I'm brand new at this sisterhood thing so bear with me.  I think I would take a shot at the smug breast navigator today, if I could.  I just finished my my second round of A/C and had to shave my head.  My mom always wants me to be a lady, but I can't help but believe they flat out misdiagnosed my freckle.

    Promise to be sweeter next time 

    8/2?/10 dx tn idc grade III stage II

  • dawn31337
    dawn31337 Member Posts: 307
    edited November 2010

    I start chemo on 11/18 and will be getting 4 DD AC followed by 12 weekly Taxol.  I've been reading these boards and see many of you also get 4 DD Taxol, which I wanted.  All I want to do is get this sh!t over with.  Another month isn't gonna kill me, but I had a goal to be done with chemo and fully reconstructed by June.  I can just adjust my goal to July :)

    The head scratching part is, I asked about the DD Taxol, and why am I doing weekly.  My oncologist said he has seen the best results and tolerance with 12 weekly, and GET THIS, there has NEVER BEEN ANY KIND OF STUDY comparing the two.  Totally blew my mind. Apparently there are other shorter regimens, that again, no one has any comparative results.  

  • NavyMom
    NavyMom Member Posts: 1,099
    edited November 2010

    Hi Dawn,  My Onc recommended 6 rounds of TAC.  That is Taxotere, Adriamycin, Cytoxan all given on the same day  every three weeks.  She pretty much left it up to me to choose 4AC and the 4 taxol  or the TAC.    I asked her to pick whatever she would want her own sister to have and she chose TAC. 

    I really just wanted to say good luck and hang in there.  Chemo sucks big time but it is doable.There are several threads on this site that will help you get through it.  If you haven't already, find or start a thread that is for women starting chemo in November.  Being with others that are going through the same things you are can be a great help.  Sending good thoughts for you.

    Navy

  • shafree3
    shafree3 Member Posts: 3
    edited August 2013
    I just had my fist Oncologist appointment after a bilateral mastectomy almost a month ago. I will have Adriamycin and Cytoxin every two weeks for 8 weeks(?) and then 4 weeks of Taxotere before having radiation. Does that sound right and has anyone else had that combo recently? I will have my port put in next week but the thought of having these scary drugs inside my body scares me more than any surgery did! My support group does not meet for another couple of weeks & I just need a little feedback Undecided
  • Luah
    Luah Member Posts: 1,541
    edited November 2010

    Dawn, you'll be getting the same regimen I had.  I wavered between the DD and the 12 weekly, and was anxious, like you, to get it over with.  While no comparative studies have been done, I have read research that a more frequent cycle of some drugs have benefited  patients with fast growing cancers like trip neg ... so it seemed intuitive to me that 12 weekly might be a good option.  That said, my onc's view is that it probably makes no difference one way or the other... except with side effects which tend to be more tolerable on the weekly cycle because each dose is smaller.  I almost felt normal on weekly taxol, no down days.

    Shafree:  Very understandable to be scared. We have all been there!  The regimen your onc has prescribed is a pretty common one and you will find lots of ladies on this board who did it.  There are excellent anti-nausea meds now and you will learn to manage other SEs, which may be minimal or not. Try posting on the Chemo board too; it's helpful to check in with ladies going through the same treatment at the same time. You'll be fine. 

  • cmksocal
    cmksocal Member Posts: 247
    edited November 2010

    I have a little different expereince.  I wanted to do neo-adjuvant chemo in hopes of having a lumpectomy rather than mx; but since chemo sort of melts your lymph nodes it is hard to know if the nodes are clear after chemo.  I opted to have the SNB first and the nodes were clear. Because of this the onc ordered 4 TC @ 3 weeks. If the nodes were affected I would have gotten ATC.  The tumor reduced 20% which was enough for a lumpectomy (which was a pretty uneventful surgery -- I've had more pain with root canals).  Margins were adequate (1 margainal, others good) and I'm having 33 rads.  

    However, now the onc is thinking that it might be advisable to have 4 rounds of Doxil. He mentioned this a couple of weeks ago and said we would wait until I was done with radiation before pursuring this.  Talk about a shock.  From what I can understand Doxil is in the same family as A, but has fewer side effects and no hair loss (I did Cold Caps for chemo #1 and keep my hair).  My best guess is the Doxil is sort of a "let us make sure we really got rid of this stuff".  I've been told that the treatments in the first year are the most important.

    Colleen 

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