2-Year Her2+ Cancer-free Roll Call

2456

Comments

  • Sydneybased
    Sydneybased Member Posts: 106
    edited April 2014

    I'm 3.5 years since diagnosis. 

    I've never really got my head around the continuing risk information. I've heard:

    - most HER2 recurrences happen within the first 2 years

    - most HER2 recurrences happen within the first 3 years

    - most recurrences in general happen within the first 5 years

    - the risk of recurring never stops with ER/PR positive

    I usually ask my oncologist if I've reached a milestone - at 2 years, at 3 years, but the reply has always been "there are no milestones".

    If anyone could clarify what the current robust evidence says about HER2 recurrence risk, that would be enormously helpful.

    · Share on FacebookShare on Twitter
  • Caya
    Caya Member Posts: 971
    edited April 2014

    Yes I would love to know what the word is out there with us triple+s,  I always got the impression that the HER2+ sort of "trumped" the ER/PR+... and I'm going on 8 years out.  If anyone has,, as Sydneybased ask - clairfication "what the current robust evidence says" about triple+ recurrence, I'm sure many of us would like to know.

    · Share on FacebookShare on Twitter
  • Karina51
    Karina51 Member Posts: 37
    edited May 2014

    Two years for me!

    · Share on FacebookShare on Twitter
  • Footballnut
    Footballnut Member Posts: 742
    edited May 2014

    my MO is fairly confident that I have a 15% chance of reoccurence. He did add that once I'm 2 years out the chance if reoccurence gets even lower

    So I would suggest that we not focus on it because we can't change anything. I'm trying to do this as best I can

    · Share on FacebookShare on Twitter
  • Moonflwr912
    Moonflwr912 Member Posts: 6,856
    edited May 2014

    2 and a half here. 

    Maybe there are no real milestones but it sure feels like one! LOL

    · Share on FacebookShare on Twitter
  • JeninMichigan
    JeninMichigan Member Posts: 2,974
    edited May 2014

    I am Stage IV (right from the start).   However, I have been NED now since June 2008!!   

    Jen

    · Share on FacebookShare on Twitter
  • Footballnut
    Footballnut Member Posts: 742
    edited May 2014

    Great to hear about such milestones!  I'm working on it!!!!  :-)

    · Share on FacebookShare on Twitter
  • Basia
    Basia Member Posts: 790
    edited May 2014

    I think there are too many variables for a doctor to give %'s. 

    · Share on FacebookShare on Twitter
  • Footballnut
    Footballnut Member Posts: 742
    edited May 2014

    I feel good and loving life even with the chemo treatment. I feel good about my medical team and thrilled that I've connected with all of you!  Here is to leach day and making the most of it!

    :-)

    You are all my inspiration!!

    · Share on FacebookShare on Twitter
  • ahdjdbcjdjdbkf
    ahdjdbcjdjdbkf Member Posts: 645
    edited May 2014

    I had my 2 year check-up last week. So far, so good. I too try to focus on factors I can control rather than those I can't although I've been in an exercise rut lately. Life showed up. I'm on a business trip today and I had time to go exercise but I didn't find the heart / steam to push on and do it today. Tomorrow is another day. 

    · Share on FacebookShare on Twitter
  • Bold
    Bold Member Posts: 692
    edited May 2014

    Hi all:

    Just dropped by to say that I am 5 1/2 years out and never felt better. My hair never came back to its original thickness. Super see through thin. So I got extentions and they look great.. Hang in there and love every moment as it a great blessing.

    · Share on FacebookShare on Twitter
  • Footballnut
    Footballnut Member Posts: 742
    edited May 2014

    great to hear about good health!!  We are super heroes and survivors!!!!!!!

    · Share on FacebookShare on Twitter
  • SpecialK
    SpecialK Member Posts: 16,486
    edited May 2014

    My general impression is that Her2+ has a shorter term window of recurrence risk, 2-3 years, but the longer term risk continues with the ER/PR+ aspect.  There is not a point in which risk disappears - it is always there.

    · Share on FacebookShare on Twitter
  • Footballnut
    Footballnut Member Posts: 742
    edited May 2014

    there is a risk with living. We can get hit by a truck, we can be in the wrong place at the wrong time, we can be diagnosed with something else, plane crashes, car crashes, train derailments, crime. Who knows. There is always risk.

    What are the risks?  When will they show themselves?  There are also women with more than 1 tumour which are totally different. One might be triple positive, the other not. 

    If we knew all if the risks out there would anyone leave their homes?

    I am triple positive. Today I feel fine. I don't know anything about tomorrow. Let's celebrate our achievements and we all have so many and try to forget about what might be

    Live for today with the hope of a healthy rewarding tomorrow

    :-)

    · Share on FacebookShare on Twitter
  • ahdjdbcjdjdbkf
    ahdjdbcjdjdbkf Member Posts: 645
    edited May 2014

    According to CancerMath the risk starts dropping slightly each and every year after 2 years. I will take it!

    · Share on FacebookShare on Twitter
  • Tinkerbells
    Tinkerbells Member Posts: 211
    edited May 2014

    Rita and those who post- thank you for inspiring those of us still in the trenches who are so scared. Bless us all.

    · Share on FacebookShare on Twitter
  • MarieNJ
    MarieNJ Member Posts: 231
    edited May 2014

    Just reading these posts gives me enormous hope.  I was recently diagnosed w/BC (HER2+) and my first MO & RO appointment is coming up in June to learn about what treatment is best for me.  God bless and continue with many more years of negative results!

    Hugs to all

    Mary

    · Share on FacebookShare on Twitter
  • rozem
    rozem Member Posts: 1,375
    edited May 2014

    I will be 3 years out in August

    Just had a clean bone scan (for some rib pain) so as far as I know still NED

    hang in there newbies...it does get better!

    · Share on FacebookShare on Twitter
  • Footballnut
    Footballnut Member Posts: 742
    edited May 2014

    such great news!  Awesome milestones!  Here's looking at 10, 20 and more NED years!!

    I get to scared sometimes!  I have a good cry then go back to living. My mother is 91 and dad passed at 87 so hoping that I'll keep rocking for many years to come. I will be 51 this summer so would really like lots of good quality years ahead of me

    image

    live from credit valley hospital. Round 2!!! One more round of FEC then on to taxotere and herceptin. Rock n roll!! So far so good. Hoping for minimal SEs although felt strange while being infused. 

    Can't wait until the chair days are over!!!

    :-)

    Have a great day all!!

    · Share on FacebookShare on Twitter
  • ahdjdbcjdjdbkf
    ahdjdbcjdjdbkf Member Posts: 645
    edited June 2014

    Keep going footballnut! I'm so glad this gives you hope. Next Friday I will be celerating the end of ALL my treatment's one year anniversary. I had my last Herceptin on 6/13/13! I plan to rreally celebrate this one as a year out from treatment is a HUGE deal to me!

    · Share on FacebookShare on Twitter
  • sduch1
    sduch1 Member Posts: 104
    edited June 2014

    I am 2.5 years out from diagnosis and in July I will also be 1 year out from all of my treatment. I had scans recently as part of a clinical trial I am in and just received word yesterday that they were all clear! 

    · Share on FacebookShare on Twitter
  • ahdjdbcjdjdbkf
    ahdjdbcjdjdbkf Member Posts: 645
    edited June 2014

    Wow, Sduch1 our situations have a lot of similarities. Next week will mark one year since I completed Herceptin. Fantastic news on your scans!!! Thanks for letting is know. I see you had some damn scary chemo too - particularly the big A. I worry when I see all the things linked to it that aw to impact aurovi. But I keep a good attitude anyway. 

    · Share on FacebookShare on Twitter
  • Footballnut
    Footballnut Member Posts: 742
    edited June 2014

    this wed is my final round of FEC. That will make 3 rounds. In early July I start taxotere and herceptin for 3 rounds then herceptin for the year with tamoxifen starting in the fall. Anyone have this cocktail?

    If so how were ur SEs?

    · Share on FacebookShare on Twitter
  • Oncearunneralwaysarunner
    Oncearunneralwaysarunner Member Posts: 252
    edited June 2014

    I'm loving the positivity of this thread. I'm nearing the one year point of my diagnosis, a year ago today I had that dreadful suspicious ultrasound. I'm sure that I'll be posting in December 2015 saying that I have been cancer free for two years. I consider myself being cancer free as of when I had my surgery where I had a pCR. 

    Footballnut - I had/have the same treatment as you. I found the side effects worst on FEC but I had severe fatigue and some nausea. I had a different fatigue on taxotere, I was tired but could not sleep. It wasn't as bad as the FEC though. I also had bone and body aches that were well managed with Advil and Tylenol. As for Herceptin, I just really have a runy nose and sometimes feel like I'm coming down with a cold the day I get a treatment. I started tamoxifen over two months ago and the side effects are minimal for me. I have some of the side effects listed but I'm not sure if I can fully blame it on the pill, there are other things that are happening in my life right now that could cause these things too. Hopefully your side effects are not too bad.

    · Share on FacebookShare on Twitter
  • lago
    lago Member Posts: 17,186
    edited June 2014

    Just found this thread. Not sure I should be here because I'm way paset 2 years. This August 31st will be 2 x 2 NED. Yup that's 4 years, Large tumor, premenopausal, stage IIB.

    It gets better as time goes on. It takes time for your body to heal from all the treatment too. Hang in there.

    · Share on FacebookShare on Twitter
  • Footballnut
    Footballnut Member Posts: 742
    edited June 2014

    oncearunner tx for sharing!

    Lago good to see you here!!!!

    · Share on FacebookShare on Twitter
  • ahdjdbcjdjdbkf
    ahdjdbcjdjdbkf Member Posts: 645
    edited June 2014

    yeah Lago. So happy to hear about your 4 years. I'm having a horrible day today crying about my lymphedema and generally feeling hopeless. Yesterday was one year since I completed Herceptin so trying to be grateful. No one I know cares how I feel anymore. They just want me to shut up. 

    · Share on FacebookShare on Twitter
  • lago
    lago Member Posts: 17,186
    edited June 2014

    Mariasnow just sent you a PM

    · Share on FacebookShare on Twitter
  • ahdjdbcjdjdbkf
    ahdjdbcjdjdbkf Member Posts: 645
    edited June 2014

    Thanks to all those who reached out to me. I'm trying to keep my chin up. I truly, truly hate lymphedema but I know my case could be MUCH MUCH worse than it is so I will count my blessings. I feel so much older than I did 3 years ago when I was skinny, fit, tan, had long blonde hair, could wear high heels, had great boobs, nice toned arms, ran half marathons without a care, etc. Being this menopausal old broad has seriously messed me up. So for today I will stick with being grateful for being NED and try to just keep going! My sister is undergoing a scare with some suspicious scarring so we are awaiting results for her. I just found this out today - which made snap out of my pity party a bit.

    · Share on FacebookShare on Twitter
  • Alicethecat
    Alicethecat Member Posts: 535
    edited June 2014

    And another one reporting in as cancer-free. Just got results of complete blood count. All normal.

    Good luck to those of you going through it now.

    It does pass.

    Alice

    · Share on FacebookShare on Twitter

Categories