5 years since my diagnosis...

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  • lago
    lago Member Posts: 17,186
    edited January 2012

    Congratulations cebr! can't wait to be able to say the same

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  • Anita333
    Anita333 Member Posts: 45
    edited January 2012

    Congratulations Cebr! Awesome number.

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  • RebzAmy
    RebzAmy Member Posts: 322
    edited January 2012

    Hi ladies

    Great to hear from so many of you. I was diagnosed in June 2007 with several positive nodes and grade 3 IDC. Got married 6 months ago and life is good. Still a bit difficult and scary but does get a bit easier as time goes on. Hoping this helps. xxx

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  • lago
    lago Member Posts: 17,186
    edited January 2012
     Congrats RabzAmy on both NED and getting married!
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  • marejo
    marejo Member Posts: 1,356
    edited February 2012

    6 year 8 month survivor here. 

    Mary Jo

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  • lago
    lago Member Posts: 17,186
    edited February 2012

     Congrats to you too Mary Jo

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  • Nana2three
    Nana2three Member Posts: 31
    edited February 2012

    This thread has been so good for me.  You are an inspirting group.  I have a question.  Did any of you take Arimidex from the beginning along with the chemo and herceptin?  My onc. started me on the Arimidex immediately and the chemo TC-H will begin in two weeks.  He said I would be on the pill for 5 years.  4 rounds of chemo and 1 year after on herceptin.   I want to make it to the old timers group but right now it looks so far out.

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  • lago
    lago Member Posts: 17,186
    edited February 2012

    Nana I didn't but I know my onc doesn't like to add anything new when you do chemo. She wants to be sure that the SE you get are from chemo not something else. Granted I don't know anyone (early stage) that started AIs before chemo.

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  • jacksnana
    jacksnana Member Posts: 168
    edited February 2012

    My oncologist started me on Arimidex after I finished chemo, but I was still taking Herceptin.  I really haven't had any significant side effects.  Best of luck to you, Nana. 

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  • Nana2three
    Nana2three Member Posts: 31
    edited February 2012

    Lago and Jacksnana - Thank you for the response.  I've been researching and checking with others and I found this morning on uptodate.com which is the website the onc.'s office used to run off the sheets on Arimidex, and the regimen says to use after finishing the chemo.  I agree with this since I want to know what is causing SE's if I have any.  Now I have to figure how to tell my onc. that I am not starting it until after chemo. 

    My onc. is not a good listener and is convenient whereas the next closest would be another 50 miles.  He also said "We'll do the Neulasta on the same day of treatment since you travel."  All literature that I've read says to be given the next day.  Why can't I have my local PCD give the shot the following day?  Another thing I question.  I refuse to let this stress me out.  Just need to refine my approach and let him think it is his idea.  Repeat...repeat...repeat I CAN DO THIS.

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  • my2boys
    my2boys Member Posts: 339
    edited February 2012

    Hi Nana2three,,

    Regarding Arimidex.  I was taking it along with chemo and herceptin, but after a year of Arimidex my bones started to ache a bit, so my oncologist switched me to Aromasin (same type of drug).  I take one pill every day and so far it seems that I am not experiencing any side effects other than those dreaded hot flashes.  I think that protocol is to take it for 5 years.  This is only for women who have ER+ tumors.  Mine were both ER+ and HER2+.

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  • lago
    lago Member Posts: 17,186
    edited February 2012

    Nana2three I would tell your onc that you would prefer to wait till chemo is over so you don't have to deal with too many SE all at once. If he says no then tell him it wasn't a question to be debated… you are waiting till chemo is over.  There is a chance you might of heard him incorrectly or s/he made a mistake. Screw your onc for now being a good listener. Remember you are paying a lot of money for the oncs services. It is his job to listen.Treat him like a 3 year old if you must by repeating yourself till he responds.

    My husband gave me the nuelasta the next day. I think having our PCD do it is a great idea. I would talk with your PCD before you see your onc.

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  • Sassa
    Sassa Member Posts: 1,588
    edited February 2012

    Tomorrow I go in for my 5 year from end of chemo CT/PET scan.  I see the onc and have blood work done next week.

    Although I have had no problems with the exception of one false positive on a scan  3 years ago, I still still feel scan anxiety. Not as bad as 5 years ago, but it is still there.

    I guess the anxiety will never go away.

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  • Sassa
    Sassa Member Posts: 1,588
    edited February 2012

    Because of an insurance snafu (long story), I am not seeing my oncologist today and doing blood work.  I am waiting until the insurance that I am paying for manages to get me into the system (hey - it has only been 10 weeks since I changed to their plan, what's the rush Frown)

    In any case, I was told by my onc that the scan was negative and she is mailing me the report. At least I got to sleep last night instead of wondering what I would be told today. Laughing

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  • lago
    lago Member Posts: 17,186
    edited February 2012

    Congratulations Sassa on the clan scan and 5 year mark. I too had a clear liver scan results from last week. Hopefully the will stop scanning me.

    I'm on my 3rd insurance since diagnosis. Don't get me started on health insurance!

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  • Gabriella5
    Gabriella5 Member Posts: 2
    edited April 2013

     Here I am too, six years since diagnosis in december 2005.

    Stage IIIc Her2 pos ER neg 14/35 nodes.

    Enjoying life!!!

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  • AlaskaAngel
    AlaskaAngel Member Posts: 1,836
    edited February 2012

    I hadn't read this thread since it was for 5 years out I thought.

    AlaskaAngel

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  • barbiecorn
    barbiecorn Member Posts: 437
    edited March 2012

    Are there any seniors on this thread who have HER2+ and long term no reoccurrence. 

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  • janet11
    janet11 Member Posts: 262
    edited March 2012

    This is my first time in the forums for a couple years too. I fnished chemo 5 years ago and got throug half the herceptin before I had to stop. But now 5 years later, no recurrences.

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  • Sassa
    Sassa Member Posts: 1,588
    edited March 2012

    It is now official as I saw my oncologist today.  I knew my results were negative from my CT/PET scan in February (long story on the delay between the scan and my doctor's appointment but as I knew the scan was negative, I was OK with the delay).

    So I am five years out from finishing chemo (4 years herceptin). As I am ER/PR negative my chances of recurrence have dropped down close to zero.  I am now on yearly followups and the yearly CT/PET scan is at my option.

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  • Alicethecat
    Alicethecat Member Posts: 535
    edited April 2012

    Survivor Ladies

    Thank you so much for posting.

    I'm close to the start of this journey (plse see signature) and so are many ladies in this group so proof that it is possible to surive is so pleasing.

    Thank you for taking the trouble to let us know how you have been doing.

    Alice

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  • Kim137
    Kim137 Member Posts: 183
    edited April 2012

    YAY!!!!! congrats!!! It's such an inspiration to hear from women who have had a good outcome! Thanks for sharing :)

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  • shadow2356
    shadow2356 Member Posts: 393
    edited May 2012

    I know a few people who are 10+ year survivors. They were never tested for HER2 status since they were early stage people. I wonder if the reason we don't hear about more long term Her2 survivors is simply that they didn't know their Her2 status.

     Anyway, I am at 2 years 9 months. I am over all my treatment and happily living life.

     Good luck to everyone!!

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  • barble
    barble Member Posts: 8
    edited May 2012

    Thanks so much ladies who share your wonderful success rates! I have 4 more herceptin to go and am 4 months into my 5 years of arimidex. I had 8 treatments of chemo and 16 radiation treatments from middle of chest to collar bone and around my back as I had 3 out of 15 nodes that tested positive. So it is very heartwarming to see the her2+ survivors!!!!!

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  • lago
    lago Member Posts: 17,186
    edited May 2012

    shadow this is correct. There are plenty of HER2+ long term survivors that didn't get Herceptin. Just because you are HER2+ doesn't mean an automatic mets even if you didn't do chemo/rads/Herceptin… just a higher possibility especially if you don't do treatment after surgery.

    Herceptin has only been used for early stage since 2006 (6 years ago) so the gains in HER2+, 10+ years NED are not showing up quite yet either.

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  • babysandpiper
    babysandpiper Member Posts: 13
    edited May 2012

    Hi, I am brand new to the board.  Congratulations to all of us, we are all survivors!  It will be 5 years for me  July 2012!  Well wishes to all of you! :)

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  • lago
    lago Member Posts: 17,186
    edited May 2012

    Whoo Hoo Babyssandpiper! thanks for checking in.

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  • Moderators
    Moderators Member Posts: 25,912
    edited May 2012

    Welcome to BCO, babysandpiper! We look forward to seeing your name on the 5 year survivors, post your screen name here! thread.

    The Mods

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  • pmm10414
    pmm10414 Member Posts: 18
    edited October 2012

    I am 3 yrs 11 months from diagnosis and just had a scare. In fact I have to go back to Onc tomorrow. It always scares me. Thank The Lord I am still alive.

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  • lago
    lago Member Posts: 17,186
    edited October 2012

    pmm10414 almost 4 years. Yes a scare but odds are in your favor of it just being a scare and nothing more. Keep us posted.

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