ER-, PR-, Her2+ Roll call

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  • KeepingFaith69
    KeepingFaith69 Member Posts: 508
    edited January 2012

    Every day I wake, I give thanks for being alive and well enough to enjoy my children, husband, laugh and smell the daisys. 

    I have down "oh woes is me" moments, but they are far loutweighed by the "yipeee, I can run play and laugh" moments.

    I love me, I love my family, I love God and I love LIFE.

    Long may it continue : )

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  • Southamptonmom
    Southamptonmom Member Posts: 491
    edited January 2012

    Sunbunny, what is RNY?

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  • Jaimieh
    Jaimieh Member Posts: 2,373
    edited January 2012

    I am here er/pr- and her2+.  I was diagnosed 12.24.08 had dbl mastectomy 1-8-09 so yesterday was 3 years being cancer free according to my onc.  I had 6 rounds of TCH folllowed by 18 vitamin H's.  I am feeling great and trying to get the weight I gained after treatment off.  I lost 30lbs on treatment which was too much.  I gained back 35 which was too much.  I seem to always have too much, but I am here and so far healthy. 

    So 3 years down a lifetime to go.  I was diagnosed at 32.

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  • Lee_Asbell
    Lee_Asbell Member Posts: 12
    edited January 2012

    Here's some good news for all you ER/PR negative HER2 positive women: I am almost 14 years out and have had no recurrence. When I had Stage 2B IDC in 1998, Herceptin was still in clinical trials and I DID NOT get it as part of my AC chemo. In addition, the testing for the BRCA genes was not covered by insurance and I could not afford the $3,000 cost. Just last year I had the test and found out I am BRCA1 positive. Later this month I am going to have bilateral mastectomy and reconstruction. My cancer adventures are not over but at least I am stll disease-free!

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  • KeepingFaith69
    KeepingFaith69 Member Posts: 508
    edited January 2012

    Lee_Asbell - THANK YOU.  It's absolutely wonderful hearing stories like yours.  You give me hope : )

    JamieH - Congratulations on reaching 3 years.  I look forward to reaching that milestone.  I hear ya re the weight gain.  I try not to let it bother me too much and didnt put myself under pressure to loose weight but 12kgs is too much extra for my small frame.  I have started making healthier food choices and am slowly (and surely0 getting back into excercise.  The 12kgs will come off, slowly and surely too.

    Loving life and grateful for my every day : )

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  • Southamptonmom
    Southamptonmom Member Posts: 491
    edited January 2012

    Lee_Asbell, So glad it is prophylactic this time! Congrats on the years of NED!

    Jaimieh, Congrats on your 4 years NED!

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  • Rubyluby
    Rubyluby Member Posts: 74
    edited January 2012
    I received my diagnosis today three years ago. There seems to be a general consensus that for HER2 positive hormone negative BC the 3 year mark is highly significant. From here on out, it seems, your risk drops dramatically. I would break out the champagne, were it not for the 30 pound weight gain I still have to shake off...but for today, I am going to savour the moment.
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  • Rubyluby
    Rubyluby Member Posts: 74
    edited January 2012

    I received my diagnosis today three years ago. There seems to be a general consensus that for HER2 positive hormone negative BC the 3 year mark is highly significant. From here on out, it seems, your risk drops dramatically. I am going to savour this moment.  (I would break out the champagne, were it not for the 30 pound weight gain I still have to shake off...)


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  • Rubyluby
    Rubyluby Member Posts: 74
    edited January 2012
    I received my diagnosis today three years ago. There seems to be a general consensus that for HER2 positive hormone negative BC the 3 year mark is highly significant. From here on out, it seems, your risk drops dramatically. I am going to savour this moment. (I would break out the champagne, were it not for the 30 pound weight gain I still have to shake off...)
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  • Southamptonmom
    Southamptonmom Member Posts: 491
    edited January 2012

    Ruby. You look beautiful. Savour the moment and a glass of champagne. I wish you many, many heathly years! Someday, I hope to make this post!

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  • momgovero
    momgovero Member Posts: 28
    edited January 2012

    I was diagnosed in December, 2008.  Had my first chemo New Year's Eve, 2008.  In June 2009, I had a right side mastectomy.  In October 2009, I started my 6 weeks of radiation.  I am in remission!!  Praise the Lord!  Herceptin is a God-send!

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  • Nana2three
    Nana2three Member Posts: 31
    edited January 2012

    I was dx Jan. 15, 2012.  IDC and Grade 3 .  Also HER2 positive.  I had masectomy 3 weeks ago. I also have MS and oncologist is working on type of treatment.  Herceptin and chemo is his first choice if Echogram and PET Scan results are OK.  I'm just today trying to figure out what I am in store for.  The questions are coming from my head so fast and I am searching for info.  Did any of you have heart problems as a result of the heceptin?  Were you able to continue with normal lifestyle and did you need to change many of your regular activities.   Appreciate any responses.

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  • KakaCathFreeSpirit
    KakaCathFreeSpirit Member Posts: 100
    edited January 2012
    Hello ladies, has anyone followed the progression of information as to the battle to get Herceptin TDM-1 available for stage IV ladies or pre-stage 4 ! Research, research, research, this miracle drug needs some publicity and grunt to get a move on... ladies ask your oncos about it...Undecided nana I did Herceptin x 18 rounds over one year and I did ok, just...Follow and ask for your readings every MUGA scan. At most, towards the end of the years infusions, seems to be where some decline some-what, still the risks outweighs the benefits, I say... I am on a clinical drug trial NERATINIB mono-arm x 1 year, early data from San Antonio BC symposium, say some complications, Mmmm. Take care and good luck, Im sure you will be OK, stay positive Smile   
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  • marjie
    marjie Member Posts: 1,134
    edited January 2012
    Nana - I just finished my 18 Herceptin.  My heart was monitored first by MUGA scans, then by monthly ECHO's - I have the last one in a few weeks and am expecting to be cleared by my cardiologist.  I'm very active but made sure to take it easy the day of my tx and for a few days following.
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  • Slainte
    Slainte Member Posts: 152
    edited January 2012

    Had my chemo Oct 2010 until jan 2011. Then herceptin continued until Nov 2011. I had MUGA scans to monitor heart function every three months. My heart function remained the same throughout all treatments. I don't think anyone will tell you chemo is fun , :) but we all made it through. Just listen to you body and rest . The herceptin was certainly easier than the chemo. Stay strong and plan to pace your self .



    Christine

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  • Slainte
    Slainte Member Posts: 152
    edited January 2012

    Marjie, congrats on your last herceptin! Have you had your port out yet? I had mine out two weeks ago. I had my last herceptin Nov 14th and I am happy to say that my joint pain is improving, slowly but it is improving. Now I notice it only in my feet /ankles and hands. I am still having some muscle weakness especially in legs but I think that may be from the docetaxel. How are you doing?



    Christine

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  • Minnshark
    Minnshark Member Posts: 19
    edited January 2012

    Hopefully not too late to give roll. Only 5 weeks out from my BMX and was not recommended by both my MO (as well as my second opinion) to get chemo/herceptin. I am overwhelmed and scared. I felt my reoccurrence chances were small but I am starting to second guess my decision.

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  • Nana2three
    Nana2three Member Posts: 31
    edited January 2012

    I just realized I posted in this forum and maybe I don't belong here.  I am ER+, PR+, Her2+.  I was just looking for HER2+ and missed seeing the ER- and PR=.  Is there a big difference in treatment.  I can see I need to do some research.  However, in reading all the posts it appears chemo/herceptin are used in both.  Is there a difference in the prognosis or longevity.

    Joan

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  • sewingnut
    sewingnut Member Posts: 1,129
    edited January 2012

    Nana,

    Sometimes the chemo regime is the same. The +++positive gals have the antihormonals also added to their treatment plan. We all get herceptin since we are Her2+.

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  • marjie
    marjie Member Posts: 1,134
    edited January 2012

    Hi Christine!

    I just had my port out yesterday...sore but a heck of a lot easier than putting it in!!  I really think (in my case) that my joint pain and swelling was caused by chemo.  I have had very little trouble as more time passes...perhaps some slight fluid retention in my legs but barely noticeable.  I would notice some extreme fatigue for a few days after Herceptin tx, but that's about it.

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  • Nevo84
    Nevo84 Member Posts: 94
    edited January 2012

    Hello Ladies

    Yesterday was my mom's last herceptin injection. She is so happy and we are either.

    Dear Nana

    My mom didn't have any problem during her herceptin injections. She is feeling so well fortunately and lives her life. Nothing changes and she can do all the stuff she did before her diagnosis. So just be positive.

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  • KakaCathFreeSpirit
    KakaCathFreeSpirit Member Posts: 100
    edited February 2012
    Yay marjie congratulations, so glad you didn't experience any complications getting it out, how long did it take ? I decided against a port insertion threw my entire treatment, but a friend of mine who's Trip- Neg has finished her treatment a few months ago and is afraid of getting it removed !!! For the most part I think it is fear of a similar experience as its insertion, sounds much like your experience !  
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  • diza
    diza Member Posts: 16
    edited February 2012

    My mother is ER-/PR-, Her2+ and has bone mets discovered just last week. We're not really happy to have to join this club but I'm so glad you are all here. Reading your stories keep me sane and not feeling so lonely. 

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  • JRose10
    JRose10 Member Posts: 8
    edited February 2012

    Hi all,

    Not happy to be a part of this forum at all but at least glad to find others who are in the same boat. I was dx ER-, PR-, Her2+ in July '11.  Had a right radical mastectomy, 15/19 nodes involved.

    I'm finished chemo and have 10 days left of radiation and will do herceptin every 3 weeks until November.

    Physically I feel fantastic (besides my sore throat which I think is from radiation) and emotionally, most days I'm great but part of me is still terrified that it will spread or recur.

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  • lkc
    lkc Member Posts: 1,203
    edited February 2012

    Hi There J Rose 10.

    Just wanted to let you know that this may I will be out 7 years from er/pr neg, her2 pos ,  Stage IIIC

    and 12 out of 14 pos nodes, AND lymph/vascular extension AND abit of " dirty margins"

    I came here occasionally to give support

    I am living large, laughing everyday and am totally well! One day you will look back and it will be a fading memory!

    Take Care!

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  • KakaCathFreeSpirit
    KakaCathFreeSpirit Member Posts: 100
    edited February 2012

    Hi Gals,

    What a lovely positive, gorgeous thing to say Ikc thats so nice to share your positive affirmation and care for others, I will keep it close to my heart ,Thanks lovely Lady, Take Care too, HugsSmile

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  • Survivorwoman
    Survivorwoman Member Posts: 620
    edited February 2012

    Thank you Linda! Thank you !

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  • JRose10
    JRose10 Member Posts: 8
    edited February 2012

    Linda,

    thos are the best words I've read in a long time!!

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  • Aussie-Sharon
    Aussie-Sharon Member Posts: 65
    edited February 2012

    Hi all

    Just popping back in to check on everyone...things are going well for me, 2012 is a big year as it'll be my 10 year cancerversary,  30 year wedding anniversary and 50 year bornaversary...all good reason for a party sometime in 2012...

    Smiling on the inside and out :-) Sharon x

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  • Survivorwoman
    Survivorwoman Member Posts: 620
    edited February 2012

    Yay Aussie-Sharon, yay! Congratulations! I needed to hear your great news today. I really did. Thank you! Wishing you many many more anniversaries in life!

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