Looking for Her2 Positive survivor stories

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  • Lila-claire66
    Lila-claire66 Member Posts: 73
    edited December 2015

    Thanks to all survivors for taking the time to post! very encouraging. I am finished with AC and just had #4 of Perjecta, Herceptin and Taxol 12 weekly. Will continue Herceptin for a full year then 'anti-hormone' not sure which one, for 7-10 years. Reading everything I can about increasing my chances of survival

  • MANORAMA
    MANORAMA Member Posts: 4
    edited December 2015

    I am also a Her positive patient .undergoing Herceptin Indian made Hertaz .would like to hear more survivor stories.

  • LizA17
    LizA17 Member Posts: 102
    edited December 2015

    3 yrs for me this month!

  • Als920
    Als920 Member Posts: 2
    edited December 2015

    My wife just got her 5 year all clear and had lumpectomy, chemo w/ herceptin and rads for treatment. Er-/PR- HER2+

    She spoke with her onc in depth about "what does 5 years out really mean" and was explained that 5 years is not as much as one would hope. 10 years is a better milestone and 15 is huge. But right now everything looks good, she's all clear and her onc has no concerns so nor do we!

  • mikitoo
    mikitoo Member Posts: 1
    edited December 2015

    Read this Dutch study. Here is a paragraph.

    HER2 status was known for the 2006-12 cohort, but after adjustment for targeted therapies such as trastuzumab, HER2 positive status was no longer significantly associated with overall survival. Apparently, trastuzumab is so effective that, with its current use in tumours larger than 1 cm, the effect of HER2 positivity on survival becomes negligible. The group with unknown HER2 status contained a large number of patients with inconclusive HER2 status, who might well be HER2 positive but who did not all receive targeted therapy. This group had significantly higher hazard rates, which endorses the necessity of targeted therapy in HER2 positive patients. Very Good News! Valli

  • rozem
    rozem Member Posts: 749
    edited December 2015

    4 years ago this month I finished my last chemo...bald as an eagle through all the xmas festivities. I went on to finish Herceptin for one year. To all the newbies, the fear you feel today will not consume you forever. There will come a day when cancer is not constantly on your mind, you wont know when it will happen but if it did for me (and I was NOT a positive person going through this) then it will for you

    Happy holidays all

  • bbwithbc45
    bbwithbc45 Member Posts: 367
    edited December 2015

    Rozem, thank you for sharing this. I needed to hear that.

  • lago
    lago Member Posts: 11,653
    edited December 2015

    Hi BBwithBC45 I live in Chicago. Where are you in Illinois. (I'm 5.5 year survivor)

  • bbwithbc45
    bbwithbc45 Member Posts: 367
    edited December 2015

    Hi Iago, I'm in Elgin.

    Fantastic results for you. Smile

  • lago
    lago Member Posts: 11,653
    edited December 2015

    not that far. Check out the Illinois lady's thread toi

  • wellspring
    wellspring Member Posts: 5
    edited December 2015

    Has anyone heard of a immunotherapy vaccine GP2 that when administered after Herceptin reduces recurrence by 57%. Findings were presented at the American Soc. of Clinical Oncology 2014 San Francisco.Did anyone receive this treatment? Please let us know. I'm paralyzed by fear of reccurence. Thank you


  • MsBrompton
    MsBrompton Member Posts: 324
    edited December 2015

    Wellspring, summary of ongoing trials here http://www.imibe.gr/attachments/File/Publications/...

    Table 3 in this paper also useful http://www.ncbi.nlm.nih.gov/pmc/articles/PMC420481...

    Very complex issue but seems to me that this is still being tested. Hope this helps.

  • kimm992
    kimm992 Member Posts: 28
    edited December 2015

    I wanted to add that there is a woman I work with who is 7 years out from triple positive! Stage 3, grade 3! She's doing awesome!!

  • HappyHammer
    HappyHammer Member Posts: 985
    edited December 2015

    It is wonderful to read all of your HER2+ stories!

    I am in middle of rads and continue to have Herceptin every 3 weeks...year ends in May. Will start hormone blocker day after last rads.

    I have read Radical Remission over and over since diagnosis. It has been so helpful! Have lost about 40 pounds and am exercising more. Trying to have better boundaries for myself. The book has been so helpful!

    Hugs to you all.

  • zjrosenthal
    zjrosenthal Member Posts: 1,541
    edited December 2015

    Does anyone here know when the GP-2 vaccine will be available and how soon after finishing treatment does it need to be started? Love, Jean. BTW Hope we all have a blessed 2016.

  • pezgal
    pezgal Member Posts: 12
    edited January 2016

    Hmm.  No info about GP-2.  Does anyone know or have feelings about NeuVax (E75)?  There is a trial near my house and I'm considering getting involved.  I've never been much of a gambler though and the experimental part of if (all trials) makes me nervous.

  • MamaBearMo
    MamaBearMo Member Posts: 17
    edited January 2016

    As far as I know, the GP2 vaccine is still in phase 2 trials. No word on phase 3 yet. I'm watching for it myself.

  • wellspring
    wellspring Member Posts: 5
    edited January 2016

    Thank you MS Brompton. Indeed very complex.

    I do hope the vaccine will be available soon.

  • zjrosenthal
    zjrosenthal Member Posts: 1,541
    edited January 2016

    Where can I get info about the E75 Neuvax trial? Any info on the other vaccines in trials,or available would be appreciated. Could the moderators let us know the latest news for we Her2 ladies? Love, Jean

  • pezgal
    pezgal Member Posts: 12
    edited January 2016

    https://clinicaltrials.gov/ct2/results?term=E75&Search=Search

    I went to clinicaltrials.gov. I'm not sure how to post a link, but maybe that above?


  • coconut123
    coconut123 Member Posts: 2
    edited February 2016

    i was dx at 36...2006...no cancer yet....living life!!image

  • sherry67
    sherry67 Member Posts: 370
    edited February 2016

    Southerncharm,

    That is great to hear. No matter if it is 6 months or longer we are all survivors. I to had a Pathological complete response after neoadjuvant treatment as well and I am 5 years from diagnosis. 😄😄😄😄

  • MsBrompton
    MsBrompton Member Posts: 324
    edited February 2016

    Thanks to everyone for coming back and posting positive messages. It means a lot.

    Today I got my 6 month all-clear. Baby steps!

  • zjrosenthal
    zjrosenthal Member Posts: 1,541
    edited February 2016

    Thank you all long term survivors. Your input is very encouraging to me. Love, Jean

  • lkc
    lkc Member Posts: 182
    edited February 2016

    I am sure I posted my story before, but I neglected to add that I am a member go a group of stage III , her pos ladies. Out 10 plus years. We are all out there livin the life.

  • LisaH
    LisaH Member Posts: 16
    edited February 2016

    Yes! We are out here. Looking forward to marking 14 years on my calendar this coming November.

  • denise-g
    denise-g Member Posts: 353
    edited February 2016

    Lisa - congratulations and THANK YOU!!!

  • lago
    lago Member Posts: 11,653
    edited February 2016

    Way to go Lisa. You give us all inspiration

  • JerseyGirl22
    JerseyGirl22 Member Posts: 186
    edited February 2016

    Yay! Lisa!!!!! So happy to hear that news!!!!

    Denise, I'm so glad to see you posting here, I love your blog!!!

    lago, I see you helping so many of us out here on different boards, you are such an inspiration!

  • specialk
    specialk Member Posts: 9,248
    edited February 2016

    On the previous page there was an inquiry about the GP2 vaccine trial.  I did participate in this trial, and it is a dual trial with the AE37 vaccine.  Here is the link:

    https://clinicaltrials.gov/show/NCT00524277

    You are sorted into either arm of the trial - either GP2 or AE37, based on tissue type unrelated to breast cancer.  You cannot choose which arm you are sorted to - this is tissue typing like would be done for an organ transplant.  Also, you have an equal chance to be sorted to the "placebo" arm of either vaccine arm, so may not receive the vaccine itself but would receive the GM-CSF only.  Participants are not informed if they are receiving the vaccine or not.  I was sorted into the GP2 arm, and had to initiate injections within 6 months of finishing Herceptin.  My understanding is that recruitment for phase II is over, but I don't know if results have been published yet beyond an ASCO presentation.  There was also an issue with litigation between the originator of this program, the drug company, and assorted others regarding the GP2 vaccine specifically - so I am not sure how that affected phase III planning and enrollment dates, and I have not seen any info on initiation of phase III.  These vaccines are still a ways off from being available as part of routine treatment for Her2+ patients, FDA approval is a long process.