Triple Negs-Need your help!

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Cherlilly
Cherlilly Member Posts: 28
edited June 2014 in Triple-Negative Breast Cancer
Triple Negs-Need your help!
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  • Cherlilly
    Cherlilly Member Posts: 28
    edited October 2007

    I just met with my oncologist yesterday and I will be having my first chemo treatment on Friday, Oct. 26th.  She wanted me to  do a clinical trial which would be either (randomly selected....no choice) 4 treatments of Taxol every 2 weeks instead of 3 with the Neulasta shot day after chemo each week) OR...you would be selected to take the treatment 6 treatments instead of 4 weeks........OR....same scenerio but with Taxol either every 2 weeks for 4 or 6 weeks.  From what I have read about Neulasta, I am not comfortable doing this clinical trial.  The purpose of the trial is to see what drug works best and also the benefit of every 2 weeks and if 4 or 6 treatments is better.  Would you even consider this trial???

    Then....if I do NOT do the trial I will be doing the standard of care, of 4 chemo treatments of Adriamycin & Cytoxan and that is it, every 3 weeks and then followed up with 30 treatments of radiation.

    From everything I have read AC does NOT respond well to triple negs and also the heart risk factor.  What if this is NOT the kind of chemo that we feel is best.  Are we allowed to ask for the one we want?  It seems like either Carboplatin or other drugs would be better.  I am 51 yrs. old and the heart problems really concern me with the AC.

    I felt where I was going was very up to date on the latest???  This does not seem like the best for me and being triple neg, like she said, we have one shot at making this work since we can't take anything afterwards (except for radiation)

    Thank you so much for any input at all from any of you and regarding your treatment.

    Cheryl

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited May 2008

    I did 5 rounds of pre-surgery FAC and had a fantastic response.

    The bottom line though is what is right for YOU!  If you don't like these options, then please get a second or even third opinion from different oncologists.  This is YOUR life we are talking about here.  Find an oncologist who will listen to your concerns and preferences.  I've learned that you have to be your own advocate.  Educate yourself! 

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  • pap54
    pap54 Member Posts: 1
    edited October 2007

    I am triple negative and have just completed 4 rounds of chemo. I am 53 and my dr was concerned regarding the potential for cardiac issues with the A/C regimen. I have a 30 year history of hypertension.

    He offered me 4 rounds every 3 weeks of Cytoxin and Taxotere. He said that taxotere is the first drug of its kind that does not have the potential for cardiac damage. I was given a neulasta injection after every chemo treatment, this helped keep my counts up, becaues with the taxotere one of the potential problems is infection. I have done well and will begin radiation treatment probably in November.

    He also felt this regimen would give me a higher % for 5 year disease free survival as welll as a decrease in % chance for recurrence, compared to the A/C regimen. He provided me with a copy of a study that supported this, published in an oncology medical journal.

    I hope this helps. Good luck. You need to feel good about the treatment option you choose.

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  • Watson
    Watson Member Posts: 1,490
    edited October 2007

    Hello,

    I was dx in May 2005 and my treatment was AC x 4 and taxotere X 4 every three weeks.  I still had to have Neulasta due to WBC.  I had no problems with Neulasta at all.  Is there some new information that I've missed? 

    You'll see in your research that for every positive thing about a drug, you will find a negative as well.  What works for one, may not work for you.   I think I would want something in addition to the AC. 

    I just went with the standard of care protocol at the time.  I know there is a lot of talk about AC and heart issues now.  The way I look at it, is I'll be alive to complain about heart issues if they come along later.

    Watson

    My future's so bright, I gotta wear shadesCool

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  • HollyHopes
    HollyHopes Member Posts: 497
    edited October 2007

    My dear...I had ACx4 every other week followed by Taxol x4 every other week and then 31 rads.

    I tried Neulasta but the bone pain was unremitting.  I switched to Neupogen which was just fine.

    Good luck with your decision.  It is ALWAYS confusing and there are a gazillion ways to look at everything.  Make your decision and then don't look back!!

    Wishing peace for you...

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  • brenda69
    brenda69 Member Posts: 39
    edited October 2007

    Hello, new speaking but been reading since 05.  Anyway-dx stage 1, grade 3, triple neg---, 0nodes.  I had 4 A/C with Neulesta and 38 rads, 2cm, IDC.  By what I am reading it sounds like A/C was not the best choice as far as recurrence??  I have not read anywhere where it says it is not effective on trip -'s?  Please send me the web site or get me that info, i am curious now>>>

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  • Negative3Grade3
    Negative3Grade3 Member Posts: 111
    edited October 2007

    Hi.

    I'm TripleNegative Grade3 and I'm doing AC (dense dosage, i.e. every two weeks x 4) followed by taxotere (4 x 3).  I have had Neulasta and not a problem for each treatment but some people do have some pain, it all depends.  I know that some of us didn't have a good response to AC and then had to be switched to Taxotere and Carboplatin but so far (i've done two treatments) we have seen a very good clinical response.  I'm doing neoadjuvant, though, so I don't know what you have decided to do.  So don't worry too much but do get a couple of opinions if it does make you feel more comfortable with your decision.  All the best, Christina.

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  • rumoret
    rumoret Member Posts: 685
    edited October 2007

    My friend was triple negative, no lymph nodes involved. She had a mastectomy and radiation because she wanted that extra bit of security (that is how she says it). In her fourth year she had a problem with a cough.....bc had went to lung. She had AC 4 treatments, and then Taxotere 4 treatments. She had reconstruction that failed, and then she got inplants....so she was getting a lot of surgeries. Now she is getting Carboplatin and Taxol.....and some other drug. The 10cm tumor in her lung is shrinking away! So I think that Carbolplatin is one good drug.



    Also, adriamycin supposely only helps 8% of women who get it.....that was the latest news this year. So many of us who received adriamycin may not of been helped by it at all....plus it can damage our hearts later on.



    So.....if adriamycin is only helping 8% of women........getting treatment with it prior to surgery would be what I would do to see if my tumor would respond. My mother got FUC back in 1999 for her triple negative breast cancer.......she is now 77 years young. I am not triple negative......but wanted to share the information with you.



    Love,

    Terry

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  • Shirlann
    Shirlann Member Posts: 3,302
    edited October 2007

    Hmm, I am not a big fan of trials. WHY? Well, some of the people get less or poorer treatment, and I never wanted that to be me. Some docs push people, as occasionally they are running the test and need participants. I don't like this idea, unless, heaven forbid, you are terminal and just want to help the women following.



    Selfish? Yeah, I think so.



    Hugs, Shirlann

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  • rumoret
    rumoret Member Posts: 685
    edited October 2007

    CORRECTION: My mother did CMF..........where did I pull that FUC from????? I'm blaming it on Chemo Brain..........YES.......Chemo brain it is!



    Love,

    Terry

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  • FloridaLady
    FloridaLady Member Posts: 2,155
    edited October 2007

    I did AC&Taxotere all together and my bc triple in size while on chemo.  If in doubt push your heart issue because your center (or insurance) may have standard protocol for your stage bc.  Like the other said get a second opinion.  ACT has helped many because this was standard protocol for many years for all bc  (only some use Taxol)  I also tried Carboplatnuim and failed that too.

    Fla

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  • Bimmer
    Bimmer Member Posts: 248
    edited October 2007

    My "opinion" is that you want cisplatin or carboplatin with gemzar.

    But these too are toxic to your heart. You'll probably need a muga scan before.

    Our experience is that cisplatin and or carboplatin works on triple negs. But it only worked for 19 weeks...But that is better than nothing.

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  • FloridaLady
    FloridaLady Member Posts: 2,155
    edited October 2007

    Cisplatin is for stage IV only.  Give this some thought...doctor told me that if they start with the secondary line of treatment and if you don't response there may not be 3rd line or fourth for tx.  You do not have a lot of disease therefore they will save the big guns for later if needed. 

    I know I thought that we would hit it hard with what is best...it does not happen this way.  Each level does work for a time and than chemo fails and you move to next level. (combo)  There really is not all that many chemo's that work for us. Yes they will give them to us but not are large wait and see.  I have been to 3 cancer centers and now out of chemo (the said world wide no known chemo per #1 ctr in US) If you don't have mets you cooked.  Just lovely! next I try am Leukemia drug.

    I have taken:

    ACT

    Gemzar, Carbo & Gemar

    Aroplatin - Trial

    Can not take Cisplatin or xeloda others no mets

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  • mogindler
    mogindler Member Posts: 3
    edited October 2007

    First, let me say my prayers are with you and your wife Bimmer.

    I am so confused.  My 1st dx was 02/06, lumpectomy, no lymph, Stage 1, 4 dd AC and 4 dd Taxol, 37 rads.  2nd dx=local recurrence, no lymph, bilateral mastecotomy.  Now being recommended is 6 Taxotere treatments, one every 3 weeks.  How can I be sure it's a local recurrence?  I have had a bone scan and a chest and ab CT.  Should I be asking about other chemos?  Everyone here seems so on the ball and I feel like I'm floundering. 

    Mo

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  • elf146
    elf146 Member Posts: 30
    edited October 2007

    I had chemo first, 1 treatment of AC which put me in the hospital with heart issues, then 5 treatments of CMF.  This was last fall.  After done with chemo, had an MRI and showed no abnormal cell.  Had a wide excision lumpectomy and node biopsy.  None of the tissue taken had any cancer cells in them.  Originally tumor was 2.5 cm.  The chemo first really worked for me.  After 2 to 3 treatments, could not feel lump any more.  I finished treatment with radiation in March and April this year and now can just keep my fingers crossed.  I do know the chemo worked, but will never know what stage I was due to chemo first.  My turmor was grade 3.

    Best of luck to everyone.  I feel great now and go back for a PET scan in two weeks.  Hugs and prayers.  Eva

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  • PineHouse
    PineHouse Member Posts: 416
    edited October 2007

    I'm chiming in my 2 cents based on my own experience and research.

    If I were you, first I would try to get a platinum-containing regimen (such as Carboplatin + Gemzar that Bimmer mentioned).  I believe platinum works well in most triple negatives.  However, it is not YET considered a standard adjuvant therapy (for early stage BC), so your insurance may not cover it.

    Next we're weighing in whether to get AC or Taxol.  Personally, if you go the AC way, you should get AC+T.  Most of us get AC+T instead of AC alone.

    Now the issue is whether you are more concerned about getting the AC for its side effects or you want to be as aggressive as possible since triple negatives tend to have recurrence.  For me this is a toss up (sorry I'm no help here).  I may slightly leaning toward taking Taxol only, which can be done in the trial or outside of trial.

    Wish you do well on whichever treatment you choose. 

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  • claire814
    claire814 Member Posts: 7
    edited October 2007

    I finished 4 A/C every 3 weeks and 12 Taxol every week on 8/2/07.  I had Neulasta injections with A/C and didn't experience any poor side effects.  Taxol caused lots of bone pain and affected my balance and I used a cane at at least a month.  I spent 2 months 2x week in physical therapy to help that.  I am triple negative and haven't discussed all the news about that scenario with my physicial but will on my 3 month Follow-Up 10/26.  My main complaint at this point is the continued fatigue and the short term memory issues.  I am working with a psychologist for testing on that because I am feeling quite inadequate at work - I have continued to work through all treatment.  Should also add that I was in a partial breast radiation study - 2x per day for 5 days prior to chemo.  I am also awaiting genetic results.  I had my first post treatment mammogram yesterday and all was clear.  I was diagnosed on 11/10/06.

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  • leamann
    leamann Member Posts: 3
    edited October 2007

    Hi, I just finished a regimen of 4 AC and 4 Taxol dose dense (every 2 weeks).  I also took neupogen injections during AC.  I had relatively few side effects during treatment other than fatigue and some nausea during AC.  I do also have mild tingling in toes / feet as a result of taxol, and 2 weeks after the completion of Taxol, the tingling / numbness is starting to subside. 

    I am not at all familiar with drugs containing platinum and am interested in hearing more about that - wasn't even presented as an option when I started back in June.  'would like to hear more about that. 

    I am 43, diagnosed in April with triple negative. 

    I am new to posting on this site.  What information sources are recommended for performing research in treatment for triple negative? 

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  • Negative3Grade3
    Negative3Grade3 Member Posts: 111
    edited October 2007

    I'm cross-listing this information that I just posted on another board in case some of you don't read all the postings under Triple negative, so I apologize for the duplicate in advance but here it is:

    For whatever it is worth, I came across the following information about a two-day conference for "Preoperative Therapy in Invasive Breast Cancer:
    Reviewing the State of the Science and Exploring New Research Directions" through the website for cancer.gov. (see html below).  There was a list of faculty researchers with their affiliations and some were listed as doing research on triple negative.  There are slides, videos, and transcripts that you can read on all kinds of topics if you have the desire and energy but if there is any information that it can help you with your decision, that would be great.  But as others have posted, make sure you weigh all your options before you decide on what surgery you will have.

    --Christina 

    http://ctep.cancer.gov/bcmeeting/index.html#agenda
    Meeting:

    "Preoperative Therapy in Invasive Breast Cancer:
    Reviewing the State of the Science and Exploring New Research Directions"

    March 26-27, 2007
    Natcher Conference Center
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