HER 2 + METS GROUP

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esbaden
esbaden Member Posts: 5
edited June 2014 in HER2+ (Positive) Breast Cancer

I am Esra Ciftci from Ankara, the capital of Turkey. I am 36 years old. I March 2007 at the age of 35 I was diagnosed as Her 2 ( 3+), grade 2b IDC when I was feeding my son - 13 months old. Now I have a 3 year old son and I want to see him grow up.

I had mastectomy. My 13 lymph nodes were removed. I had only one lymph node metastasis whose diameter was 2.8 cms. I had chemo every three weeks for six times. In the chemo I was given ‘silkofasamid, dekotaksel, doksubirin.' When the chemotherapy was over, I was given herceptin for 9 weeks I was told that it was an early diagnosis. So I carried on my life as usual.

     In May 2008(seven months after the treatment) during my three-monthly check ups, the cancer was seen to have metastasized to my liver, lungs and abdominal lymph nodes. After I had the third chemo on 9th July, It was seen that my tumors shrank about %25. Also My CA 15-3 decreased to 70 from 109 and CEA was 2.8 from 8. After the sixth chemo, in my liver, next to right lob anterior segment inferior posterior there were tumors the largest of which were 1.5x1.2 and 26x21 sized in infiltrative patters with irregular borders. It was seen that the small tumors in my liver had disappeared and two big tumors were left. In my abdominal lymph nodes the tumors shrank to milimetric sized. In my lungs   tumor nodules  the largest of which shrank to 6 mm sized from 1 cm in the right lung in the middle lob lateral segment . And unfortunately I had minimal regression in my lungs and that 1 cm tumor shrank to only 6mms. The metastases in my abdominal lymph nodes shrank to milimetric ones. Also My CA 15-3 decreased to 38.7 from 109 and CEA was 2.1 from 8.

     My oncologist says that my cancer seems to be in remission, and that I will have three more chemos and following that I will carry on with herceptin every three weeks until the cancer develops resistance to Herceptin. I know that in about one to three years the cancer develops resistance to herceptin. Following herceptin resistance, I will have only one choice left Tykerb with Xeloda. I also know that these medications only prolong life and do not totally eradicate cancer.

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  • Maryiz
    Maryiz Member Posts: 975
    edited October 2008

    esbaden, I do believe that they are working on a vaccine for HER positive breast cancer.  It has shown to have great promise. It has not entered phase 3 yet, so I don't know if it's available.  I know in the states there is more than one research hospital working on this vaccine.  I believe it has a lot of promise.  I can tell you one of the vaccines is called NeuVax (I think)  I would suggest doing your research.  One of the places working on the vaccine trial is Johns Hopkins University.  The NeuVax is being put out by some other company, try googling it.  Hang in, Maryiz

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  • vhqh
    vhqh Member Posts: 535
    edited October 2008

    I would like to add that there are many women who continue to get Herceptin for many years with no apparent resistance.  I just started Tykerb this week and will continue to get Herceptin, there has been significant evidence that has just come out that the two drugs, Tykerb and Herceptin, actually work better when combined.  Xeloda may be added later, if that doesn't work there are still others.  The vaccine does sound very promising, I hope to be able to benefit from it.  Don't put too much faith in the statistics you are given, they are outdated by the time they are made public. 

    Martha

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  • Annaanne
    Annaanne Member Posts: 190
    edited October 2008

    Welcome Esra:

    If you don't already know about it, I'd like to recommend another web site "Her2 support" for Her positive bc.  There are many women on that site who have been successfully treating and living with mets for a long time.  There are even a few who have stopped herceptin after 10 years! -- not because they became resistant, but because their doctors believed it was no longer necessary.  There are several young women on the site and an international community as well.  

    I wish you the best

    Annaanne  

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  • Maryiz
    Maryiz Member Posts: 975
    edited October 2008

    Martha, just to add to your point, the expert at JH says they are doing vaccine trial for HER2 positive and it is "showing great promise."  She says she is more hopeful than she has ever been with regard to the future of BC.  THey are starting a new trial in the spring, but not sure who qualifies?  You can google the Baltimore Sun and read the BC stories on there, but the women selected for the story are not necessarily the ones who profited most from the vaccine trial.  I hope you can just keep that in the arsenal IF you should ever need it. Maryiz

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  • vhqh
    vhqh Member Posts: 535
    edited October 2008

    Well, the trial I found I required stable bone only mets......which I was until last month.  Shoot!

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  • Sarcophagus
    Sarcophagus Member Posts: 2
    edited October 2008

    Wellcome Esra. I am from Ankara too. My mother has metastases on lung and skin. She has used herceptin and then started to use Tyverb. Now she is taking Tyverb with Taxol. She is generally fine. Please be calm and trust your doctors. Everything's gonna be alright. I am praying for all fighters against this terrrible disease.

    Hugs

    Ceren

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  • esbaden
    esbaden Member Posts: 5
    edited October 2008

      Hi Ceren. I am very happy to hear from you someone in Turkey. I live in Ovecler- Dikmen. I would like to communıte with you on the phone if that is OK with you. How long did your mother take Herceptin before she moved on to Tykerb.I heard that they give tykerb with xoleda. I am surprised with tykerb & taxol combination. My e-mail is esbaden@gmail.com. My thoughts and prayers are with you as your mother fights this terrible disease.

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