Chemo didn`t work

brookezine
brookezine Member Posts: 12
edited January 2015 in Triple-Negative Breast Cancer

I was dx with triple negative breast cancer in feb of this year. I started chemo right away -AC followed by Taxol and two rounds of carboplatnim. They had estimated the tumor to be at 3cm when i started, and i hd an ultrasound halfway through that said it shrank to 2.1cm. I had a bilateral mast on 9-16 and the tumor was 3.5cm and in one node. I saw the onc today and my rate of recurrance went from 19% to 60%. I‘m scared. They are going to do 7 weeks of rads. My margins were negative so i thought everything was ok. I'm trying to stay positive and change my ditet and really exercise everyday, but i am so scared. I don't want this to kill me. Does anyone have any experience with this or any advise???

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  • Racy
    Racy Member Posts: 2,651
    edited October 2014

    brookezine, sorry that I don't have any information to share but hoping others will post soon.

    The only thing I can suggest is to get another oncologist's opinion at a major cancer centre. 

    I feel for you and wish you the best outcome.

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  • sylviaexmouthuk
    sylviaexmouthuk Member Posts: 7,847
    edited October 2014

    Hello brookezine

    I am posting to say that I am thinking of you and try not to worry too much. The important word that you used was that the tumour was 'estimated' to be 3 cms. Sometimes there is a difference in the estimated size and the actual size after surgery, when the tumour is looked at. The important thing is that you have had a bilateral mastectomy and that the offending tumour has gone. Focus now on the seven weeks of radiotherapy, which is given to mop up any stray cells. Do not focus on percentages.

    Get through your radiotherapy. Give your body time to recover from all this nasty treatment and focus on getting strong again, sticking to a healthy diet, some gentle exercise, eliminating chemicals from your everyday environment as much as you can and look forward to the future with optimism.

    I am sure the one positive node would have been removed with the surgery, along with a number of non-positive nodes just to make sure.

    Sending you best wishes.

    Sylvia 

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  • Luah
    Luah Member Posts: 1,541
    edited October 2014

    brookezine: Not very long ago (a year or two), neoadjuvent chemo was not as commonly done as it is now. The advantage of neoadjuvent is that it can tell you if chemo is working; the disadvantage is that you also know if it isn't. For many of us, our first treatment was surgery, and we have no way of knowing if our adjuvent chemo did anything at all... I am willing to bet that for a-not-insignificant number, it perhaps didn't. And yet, we are carrying on. (I had 2 tumours 2.5 cm and 1.5 cm plus 1 involved lymph node.) Try not to get hung up on the stats. 

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  • JoeyJamesMom
    JoeyJamesMom Member Posts: 110
    edited October 2014

    Hi, brookezine.

    Luah brings up a great point.  I hope that somewhat puts your mind at ease.  

    My tumor has shrunk, but I still worry about stray cells getting through it.  So, none of us know for sure :-(

    Question, though.  You said this:

    I saw the onc today and my rate of recurrance went from 19% to 60%.

    How do oncologists determine this?

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  • brookezine
    brookezine Member Posts: 12
    edited October 2014

    JoeyJamesMom, 

    My MO has a computer program tht she put inmy age,33, tumorsize, and lymphnode involvement and it spits out the statistic. I don't think there is a way to put how many nodes were inolved. My BS said since it was only 1 node and the margins were clear it was good news. Then I see the MO and it was doom and gloom. Maybe I cold split them both down the middle!! 

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  • JoeyJamesMom
    JoeyJamesMom Member Posts: 110
    edited October 2014

    Hi, brookezine.

    Thank you for that information.

    Geez, I am so sorry you have to deal with this.  Your so young.  

    I wish you well.

    I hate this disease.

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  • christina1961
    christina1961 Member Posts: 736
    edited October 2014

    Brookezine,

    I'm so sorry you are going through this and I understand how scared you must be.  I had neoadjuvant chemo also, and my tumor was estimated at 2 cm on MRI and 2.5 cm on mammogram. No nodes were visible on the MRI, but one was palpable.   I didn't have any scans during chemo, but the lump shrunk and softened and the node "disappeared."  The oncologist thought I had had a complete response.  When I had the mastectomy, they found that little had actually changed - my tumor was still 2 cm and I had two positive nodes.  I was told I had a 50% chance of recurrence.  I had radiation, then entered a clinical trial of additional chemo - eribulin. I went to two additional oncologists for second and third opinions at this point also because I was so worried.  Also, they retested my tumor and found 5-10% ER receptors so I am on tamoxifen.  My original biopsy showed triple negative. I was originally diagnosed in 2/2011 and my mastectomy was July 2011.  So I am over the three year mark and doing well.  Hang in there, if you want to do additional chemo, ask your MO about clinical trials.  I'll never know whether the eribulin helped, but I wanted to make sure I did as much as I could do to keep it from coming back.

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  • brookezine
    brookezine Member Posts: 12
    edited November 2014

    Update: I went back to the MO, and she said the 60% was only applicable if they did not do chemo, which they did. The tumor did shrink during chemo, from an estimated 2.6 to 2.1. My understanding is they don't know the actual size until it was removed, so there is a possibility is was bigger. Regardless of tumor size, I know it shrank and I felt it get bigger from the time chemo ended until the surgery 4 weeks later. I had a second opinion and I was told not to focus on statistics. I have some HER2 in the tumor, so I am going on a clinical trial for a vaccine to prevent recurrence. I am also waiting on my breast to heal from surgery ( i lost one nipple after surgery), and I hopefully start rads at the beginning of Dec. Once that's done, I start the vaccine. I'm feeling much more positive!

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  • Beachbum1023
    Beachbum1023 Member Posts: 1,417
    edited December 2014

    Hello everyone, I'm new and looking for info to explain why the AC produced fantastic results, and Taxol failed me. My tumor actually grew on Taxol. For me the Taxol and Neulasta bone and joint pain was pretty severe, but I only took half of the Neulasta after my 4th Taxol and did not have any pain. And my blood counts looked good when I had surgery 12/15/14. My surgery was scheduled for 12/23 but we moved it up since the tumor was growing so fast. Has anyone else had Taxol fail?

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  • Luah
    Luah Member Posts: 1,541
    edited December 2014

    Beach: It's becoming increasingly clear that TN has many different subsets... likely some respond well to AC, and others to taxol. Some of us who had surgery first have no idea if our tumours responded to either, both or not at all. Try not to worry, if you got fantastic results from AC, that's a good thing.

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  • Morwenna
    Morwenna Member Posts: 1,063
    edited December 2014

    Triple negative is merely a descriptor defining what is NOT there.

    Like saying a thing has a colour that is not red, blue or green; it could still be violet, yellow, turqupose, black, white or an infinite number of colours! So there could be any number of types of cancer that do not contain Estrogen, Progesterone, or HER_2 receptors!

    I'm one who had surgery before chemo, so I'll have no idea whether chemo made a difference or not. My onc said that "most triple neg responds well to chemotherapy". To which I replied, "but some don't." "Some don't", she agreed, but on my report for disability payments she described my management as " treating for a cure" ...... and I like that expression! :)

    Now all treatment is finished, all I can do is try to keep well, and a healthy weight, diet and level of activity, ........ and fingers firmly crossed!

    Sometimes I feel certain it will recur. Other days I feel very hopeful that we have it beat. Sometimes I can forget about it for hours at a time, (which is lovely!), but it is with me every day, as I have only one breast, a tight shoulder, mild lymphedema in that arm ...... and in about 10 days I'm going for a second mastectomy and bilateral flap surgery, so I don't exactly feel like I have "moved on", or know if that is a realistic hope.

    As Tiny Tim says, "God bless us, every one!" xxx

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  • Redporchlady
    Redporchlady Member Posts: 113
    edited January 2015

    Morwenna, Why are you having a 2nd Mastectomy?  Did you have something show up on a MRI or you positive for BRA's?  Good luck with surgery.  I have 2 months of chemo yet and surgery in March so I am praying every night for a NED!  My husband laughs because he wants to know about this NED guy.  :-)  We have to find some humor in this hard disease. 

    Roxanne

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  • Redporchlady
    Redporchlady Member Posts: 113
    edited January 2015

    Beachbum, It is scary to think that Taxol doesn't work for some.  I am one month into my weekly Taxol and have had 2 Carboplatins which are every 3 weeks.  My tumors shrank on the AC but so far nothing has come back.  My surgery is at the end of March.  How did your pathology report come out from your surgery? 

    Roxanne

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  • Beachbum1023
    Beachbum1023 Member Posts: 1,417
    edited January 2015

    Redlymphporchlady, I had clear margins and 0/5 lymph nodes. It was Stage IIIb for the actual tumor. So I was very pleased considering the tumor was 5cm when it regrew on the Taxol. I was very happy to see that tumor gone. Now we make the plan to attack the mets, abdominal lymph nodes and lung nodules. I also had Taxol as a single agent, so your cocktail may work better. I will be starting either rads or chemo again shortly.

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