Newly diagnosed Triple neg

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  • Aussiegirl8
    Aussiegirl8 Member Posts: 4
    edited April 2008

    Hi again Vickan,

    I had AC every fortnight which I finished last week. Next week I am going to start taxol and I chose to have it weekly for 12 weeks as it is given at a lower dose and I am hoping it will minimise side effects. The other option was every 3 weeks for 4 cycles. I am a bit nervous about how I will react to taxol. Are you also having AC and taxol? How are you going with your treatment and side effects? 

    Aussie Girl 

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  • snowyday
    snowyday Member Posts: 1,478
    edited April 2008

    Hi Vickan:  I'm finished treatment but still feel like crap, I remember how scared I was when I found out what triple negative was, I was such a dolt, I tought negative was good (brilliant huh).  When you get your treatment make sure you really take vit d3 and calcium. So many things to say about treatment but we are all different and you might do really well through it.  Keep in touch and any questions at all ask, if I can help I will. Pearl

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  • FrequentFlyer
    FrequentFlyer Member Posts: 15
    edited April 2008

    Hej Victoria,



    Same story here: 39 years old and couldn't find much info about triple negative in my home country. Actually they didn't even tell me that I'm triple negative in the first place. Like Pearl I used to think not needing those hormones was a good thing.

    Came across the term "triple negative" while looking for general information and was quite shocked when I learned what this really means.



    Kära hälsningar från Tyskland

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  • Vickan
    Vickan Member Posts: 54
    edited April 2008

    Hi Aussie Girl,

    I am having AC 4 times (every other week) and after that starting Taxol 4 times (also every other week) so the total cure will be during 15 weeks. So I guess you will have some more treatments am I correct? This is so confusing as it seams like it is so different among the countries.

    I am handling the treatment pretty ok, some days just so so tired. What about you? How is it going?

    Will you do radiation? Have they mentioned that?

    Keep in touch,
    Victoria

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  • Vickan
    Vickan Member Posts: 54
    edited April 2008

    Hej Frequently Flyer,

    So we are the same age also. Me to ironically thought it was good to be triple neg ;o(

    I see you have been on TAC 6 times. What means ALND+TEF and waiting for DIEP?


    So many questions pupping up?

    My fear for this breast cancer is enormous!!!!

    Kära hälsningar från Sverige

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  • Vickan
    Vickan Member Posts: 54
    edited April 2008

    Hi Pearl,

    I can understand if you are busy with your own stuff hope that you feel a bit better shortly. I feel ok during my treatment, so good so far.

    Your writing when thinking triple neg was something good (not) was the same for me. But we are all hanging in fighting. Hope you have a lot of support. What kind of treatment have you had?

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  • Aussiegirl8
    Aussiegirl8 Member Posts: 4
    edited April 2008

    Hi Victoria

    I found that AC made me feel very, very tired and a bit nauseous with a horrible taste in my mouth for a week. My skin also got very sensitive and sore to touch about 4 days after treatment.

    I have decided to have radiation, even though I have had a mastectomy. I figure it is best to do all the treatments available. That will be daily for 5 weeks after taxol. Have booked a holiday for October to celebrate the end of treatment. Really looking forward to that!!

    Aussie Girl

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  • Vickan
    Vickan Member Posts: 54
    edited April 2008

    Hi Aussie Girl,

    You and I have so many things in common. I have a son he turned 2 in January and I also noticed my lump "over night" so to say.

    I will also have radiation and have done mastectomy.

    Planning and looning for a holiday and I guess I will also be done somewhere in aug/sep so have also been thinking of going away in October.  If you have send me a private note would be great to get to know each other more.

    Victoria ;o)

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  • defeatbc
    defeatbc Member Posts: 53
    edited April 2008

    Hi Victoria.

    Yes.  I would definitely like to compare our treatment plans.  At this time, I've only had one oncology consult and am going through a lot of initial tests and scans.  I am definitely getting chemo (but don't know what type), and no radiation because the bi-lateral mastectomy margins were clear.

    I see you also have a young child.  We are so blessed to have children, gives us so much love for life -- so much more reason to live.

    defeatbc 

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  • HeatherBLocklear
    HeatherBLocklear Member Posts: 1,370
    edited April 2008

    Hej Victoria,

    Were you named for the Swedish crown princess? Cool When I was a little girl, I was SURE I would marry her father!

    You asked about treatments. In this country, we don't have always have standardized regimens as you usually do in Europe. For example, I am in a clinical trial where I get four rounds of Taxotere and Avastin (approved in the USA for breast cancer this past February, but available in Europe for that use since early 2007); then four rounds of A/C. I'm going for my third Taxotere/Avastin treatment this coming Wednesday.

    Avastin is a drug that prevents a cancerous tumor (among other things) from forming new blood vessels to nourish itself. So, theoretically at least, a double-barrelled cannon is being used: the Taxotere kills the cancer cells that are already there (and perhaps circulating in the blood or lymphatic system), and the Avastin starves the tumor of blood so it can't keep getting bigger and bigger.

    You might want to ask your oncolost about Avastin in your case too.

    Curcuma is called gurkmeja in Swedish. It's a spice related to curry and saffron, used in Indian and Indonesian dishes.

    Venlige hilsen (Danish),

    Annie

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  • Vickan
    Vickan Member Posts: 54
    edited April 2008

    Hi Annie,

    So you wanted to get married to our king.. ;o). Glad you did not because I think he is so booring. But I understand what you mean because he looked good when he was younger.

    I do appreciate you sharing your treatment. As you mention the treatment in Sweden (Europe) is very standardized so all the comments I can get is useful. I will definitely ask my oncology about Avastin.. I did not think that it was applicable for me as I am triple neg.. but I will definitely race that question.

    What about Curcuma? Is that a herb I should take myself?

    By the way are you Danish?

    All the best!

    Victoria

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  • Vickan
    Vickan Member Posts: 54
    edited April 2008

    Defeatbc,

    Yes I am so so blessed to have a child, even though it makes it harder for me some days when I get angry and depressed about this bc... but I will fight it.

    I am having chemo as I have mentioned and will then afterwards have radiation for 5 weeks. When you know your treatment plan please share and all the best to you in your recovery.

    Victoria

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  • HeatherBLocklear
    HeatherBLocklear Member Posts: 1,370
    edited April 2008

    Bonjour Victoria,

    No, although I have Scandinavian heritage, I'm really just a linguist (university professor). I am triple negative too, that's why I suggested asking your oncologist about Avastin. It's one of the few treatments that might end up being targeted therapy for our type of BC (it's already in wide use for colon and lung cancer).

    Curcuma because FlaLady said it helped her, and you asked what it was, and if you should be using it. I gave you the Swedish word for it so you can look for it if you feel like giving it a try.

    Gros bisous,

    Annie

    PS: Also, do you know what type of triple negative you are? Medullary, typical or atypical? Metaplastic? There are different kinds.

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  • Vickan
    Vickan Member Posts: 54
    edited April 2008

    Linguist university professor I guess that you are good at languages then... Thanks for the translation regarding curcuma (sorry for my confusion).

    So how are you doing? How long will you take Avasti`n? I will defintely bring up this topic with my oncologist.

    I do not know that there were different kind of triple neg. Which one are you? The only "thing" I have heard is that my is ductoal carcinoma...

    How are you coping up? I wish you all the best and plz keep in touch.

    Victoria

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  • jezza
    jezza Member Posts: 698
    edited May 2008

    Hi Aussiegirl

    I have sent you a Private Message re our Australian site.

    Just go to MY Home at the top of the page to retrieve it.

    jezza

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  • Shirlann
    Shirlann Member Posts: 3,302
    edited May 2008

    Hi Vickan, I am the old lady of Triple Negs.  I am 9 & 1/2 years post treatment, and just fine.  When I was diagnosed they knew very little about Triple Negs, so no one said much of anything.  All this newer info has been since my diagnosis.

    I am so glad you found us!

    Gentel hugs, Shirlann

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  • defeatbc
    defeatbc Member Posts: 53
    edited May 2008

    Hi Victoria.

    I've been looking forward to sharing/comparing treatment plans with you since we were both recently diagnosed. 

    I have finally started chemo today:  6 rounds of Taxotere and Carboplatin (heavy doses, 3 week intervals).

    I see so many different types of chemo for tri-negs (possibly because we are fortunate to respond well to various types).  Each oncologist has his/her own opinion on what's best.  I was very surprised to see that I won't be getting AC, as it is very common with the ladies on this forum.

    I hope your treatment is going well.  I just got my first infusion today.  So far, I only feel a little more tired and want to go to bed early.  We have yet to see how much of the side effects I eventually get.

    Hope you have a relatively comfortable treatment, and a quick recovery afterwards.

    -- Hoa (defeatbc) 

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  • Sadie-Rose
    Sadie-Rose Member Posts: 222
    edited May 2008

    Hi (defeatbc),

    I was treated with taxotere and carboplatin.  I first had 3 rounds of AC with did not work and we switched to TC.  I did 6 rounds too.  I am 4 or 5 years out depending when you start counting.  I think you are on a good path.  You made it through the first one, only 5 to go!

    Warmly,

    Sadie

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  • Vickan
    Vickan Member Posts: 54
    edited May 2008

    Hi again

    Appreciate all your support so much. I am just "done" with 4 rounds of AC which I got every other week and then had some time off for and extra week and tomorrow I will start Taxotere also 4 rounds every other week.



    The AC treatment went fine for me but was a little bit harder the fourth time as they increased the dose and my red counts dropped dramatically. Now I am worried for the Taxotere and those side effects. But I hope I will make it without to much trouble.



    Defeatbc as you mention it seems not be any standard treatment and we all get different set-ups and as I am based in Sweden then I am so interested in which treatment you get in the US.



    We all must keep up the spirit and fight this.



    Please keep in touch.



    Hejdå (Bye in Swedish;o))



    Vickan

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  • twink
    twink Member Posts: 1,574
    edited May 2008

    Vickan,

    Sounds like our treatment was similar.  I started off with 4 AC (dose dense, same as every two weeks), then 4 Taxotere.  Had the bilateral mastectomy after Taxotere and the tumor was virtually gone (measured less than 2 mm).  Unfortunately 3 nodes showed postive for micromets so I went on to 4 infusions of Carboplatin (after a second opinion) and radiation therapy (28 full field and 7 boosts).  I had the most difficulty with Taxotere of all the chemotherapies including mild hand foot syndrome, minor neuropathy (which has since passed), thrush, sore and watery eyes, and general malaise.  It seems like so long ago now as the last Taxoterewas May 24th last year.  I hope the treatment passes quickly and uneventfully for you.

    Warm wishes,

    T

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  • DOUGHY100
    DOUGHY100 Member Posts: 20
    edited May 2008

    After leaving my second opinion appointment at Dana Faber Cancer Insitute, Boston I feel wiped. In January I was Dx ER-, PR-, HER2/neu 3+. Now, they tell me I am Triple negative. They will be dropping my Herception (after 3 treatments.) I will remain on Taxol and Carbplatin. Feeling wronged and cheated. My Onc prescribed my Chemo looking only at my biopsy results, she never read the tumor results. After all I've been thru, now this.

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  • nosurrender
    nosurrender Member Posts: 2,019
    edited May 2008

    Suzanne, did they re-test your tumor to find out if you were HER2-?

    There are two types of lab tests for this.

    If you are indeed Her2 neg that is GOOD! You don't want to be Her2+.

    And now you don't have to do any more herceptin.

    And if you are ER/PR neg, then the protocol you are on is the BEST. Many studies have shown Carboplatin/Taxol to really work great.

    I hate the term "triple neg" because it makes it sound like we WANT to be her2 postive.... WE DON'T.

    All tripleneg means is we do not have estrogen (1), progesterone (2) and Her2Nue (3) receptors. That is the Triple.

    So it means that endocrine therapy doesn't work on the estrogen and progesterone receptors since we are impervious to its effects...

    and we can't take Herceptin because we don't have the Her2 protien fueling our breast cancer to grow at a faster rate - that is a good thing.

    You can send your tumor to major cancer centers and hospitals for more opinions and tests to put your mind at ease. But for now, you should be happy you don't aren't a carrier of Her2.

    hugs to you,

    g 

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  • DOUGHY100
    DOUGHY100 Member Posts: 20
    edited May 2008

    g,

    Can't say i'm happy to be TN, as a matter of fact, not happy today at all. I feel I have lost confidence in my Onc. I don't have an appointment with her until May 26th. Once again I have to endure the dreaded "Wait". I had placed complete trust in my providers, I went to Dana Faber only because I could- because insurance would cover a 2nd opinion. Never in my wildest dreams would I think they had messed up my receptor testing. My plan is to wait 2 weeks until all the repeated testing is complete (this time my core biopsy samples and tumor will be retested). I then will have to go with that DX.

    DF suggest that I go thru treatment #3 tomorrow and receive TCH- the Herception, which will be my last dose of H. Tomorrow's treatment will be difficult for me, I feel I've been treated poorly. I guess when I first met with my Onc., and she had no eye contact with me, and didn't want to answer my questions (she told me to save my questions for my appointment with the Onc. NP) I should of thought twice about dealing with her.

    Thank You for your comments, when I received your response you made me feel better.

                                                                Suzanne

    Today was a bit difficult, soon the Sun will shine again!

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  • Wurmi
    Wurmi Member Posts: 5
    edited May 2008

    Hi from Norway!

    I am now 37 and have a litte girl who is now nearly 20 months old.

    I got 4xFEC100 and after that 4xTaxotere, all with 3 weeks in between.

    When I read so much about Carboplatin I am getting scared, that I did not get it myself! Why did some of you get it additionally?

     During my last month of pregnancy I found a little lump, but unfortunately, I was not taken seriously, I had 3 wrong biopsies, all showed "All ok", where did she stick me???? And just because I was fighting, I got it out anyhow and that took from August 2006 til May 2007..... Well, then I got the triple negativ diagnosis. I went to Germany, Heidelberg to get a second opinion and then it was decided that I got the chemo as described and additionally 25xradiation (finished january 9th 2008).

    Oh, I got a full mastektomie on the left side right after they found out athat the lump was cancer and now, 3 weeks ago I got the other breast removed. So now I am finished and hoping for the best.

    Or, should I go and get also Carboplatin now?

    So, now you got my story also :-).

    We are really international here :-).

    Mange hilsen / Viele liebe Gruesse / Many greetings,

    Wurmi

    PS: I take Gurkemeie/Kurkuma daily as well as garlic, makes me feels good because I get the feeling that I am doing something!

    In Norway we can buy the book: "Mat mot kreft", in Germany: "Krebszellen møgen keine Himbeeren", sorry, I don\t know the titel in English... It is from Canadian/French Professors.

    PPS: @Frequent flyer: Hast Du Kinder? Da kann ich Dir die beste Anschlussreha oder wie das heisst, :o) empfehlen, in Grømitz an der Ostsee. www.gemeinsam-gesund-werden.de

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  • smithlme
    smithlme Member Posts: 1,322
    edited May 2008

    Suzanne,

    I'm so sorry for all you've been through. You have every right to be angry and upset with your Onc. We put our trust, and our very lives, in their hands, and expect them to do everything to keep us alive. You also have the right to change Oncologists and get one who truly has your best interests at heart, will spend time explaining things to you and who will do their job. There's no excuse for the way you've been treated. Kick her to the curb and find one you trust...

    Linda

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  • DOUGHY100
    DOUGHY100 Member Posts: 20
    edited May 2008

    Linda,

    Thank You so mush for your thoughts and kind words. I really don't know what I'll do. Seeing that my Onc. is the Director of the Comprehensive Breast Care Center of our local Medical Center. The Dr at Dana Faber in Boston didn't mention that she felt I should continue under her care. I need to do lots of research for other Onc. in my area. You have helped me to feel better. Thank You again.

                                                            Suzanne

    Life delivers many ups & downs, it is up to us to remain positive. Positive always atracts positive.

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  • smithlme
    smithlme Member Posts: 1,322
    edited May 2008

    Suzanne,

    Yes, do your research and find an Onc you are happy with and can trust. Trust is built over time, it doesn't come with a title. Directors can be known to have zippo in the personality department.

    I hope your treatment goes well today. I know how difficult the waiting is for results, so I hope times goes by quickly, for you...

    Linda

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  • Vickan
    Vickan Member Posts: 54
    edited May 2008

    Hi Wurmi,

    A very international site right now. Women "popping" up from different places ;o). Thanks for sharing your treatment. I also get worried why I am not getting carboplatin when reading so much about it and had affected lymphnodes.... I raised the question with my onc but as it not have been tested in Sweden they are not offering at the moment... So I have to cross my fingers that AC and Taxotere is working for me....

    Vickan

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  • jdash
    jdash Member Posts: 754
    edited May 2008

    triple neg here! i was stage 3b - had adjunct chemo dd 4 AC followed by 4 Taxol- had surgery and docs said i had a 100% pathological response - meaning all nodes clear and breast removed clear- NO sign of cancer -  your treatment is the best and trip neg tumors respond the BEST to chemotherapy 

    hang in there - its not easy but the treatments are doable if you keep focusing on the end results

    lots of hugs

    julia

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  • Vickan
    Vickan Member Posts: 54
    edited May 2008

    Wow Julia,

    That is perfect to know. I am definitely going to hang in there and fight this... having some deep "bad" days at the moment though...

    So if I understand you correctly when they removed your breast and lymphnodes all the cancer was gone...?!

    A big hug,
    Victoria

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