Anyone HER2+ cuz I Am...what's our chances??

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divina913
divina913 Member Posts: 45
edited June 2014 in HER2+ (Positive) Breast Cancer

I'm HER2+.... from all the information I've read..it's poor prognosis!!! I just want to see if anyone else who are in the same boat I am?? Because I'm scared as hell!! Consedering going to MD ANDERSON for 2nd opinion!! Thanks for reading my topic ladies!!!



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  • sweetbean
    sweetbean Member Posts: 1,931
    edited April 2012

    Hi there!  I'm triple positive, too.  Definitely get a second opinion, but remember that Herceptin is a very powerful drug.  Are you doing chemo?  Have you had surgery yet?

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  • sheila888
    sheila888 Member Posts: 25,634
    edited April 2012

    divina...we practically have the same DX.

    i just celebrated my 7 year NED.

    Please join the Thread I highlighted.

    Hugs

    TRIPLE POSITIVE GROUP

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  • CoolBreeze
    CoolBreeze Member Posts: 4,668
    edited April 2012

    Do NOT google!  Here is the thing - the way you move to the top of the search engine is how many links an article has.  Who has the most links?  OLD articles.  So, they are at the top.

    But, with herceptin, tykerb and TDM1, HER2 is a whole new ball game.  So, when you do google, make sure you look at the DATES of the articles and stick to legitimate sites, such as pubmed, or the Mayo Clinic. 

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  • Caya
    Caya Member Posts: 971
    edited April 2012

    Divina -  We also have almost the same DX.  I am over 5 years out.

    Don't believe most of that stuff you read on the internet, "Poor Prognosis" was before Herceptin, the magic bullet for Her 2+ BC.  You are also ER/PR+, which means you will have the added weapons of Tamoxifen and/or an AI. 

    I see you were diagnosed in 2011 - it's now April - what treatment have you had? 

    Caya

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  • melly1462
    melly1462 Member Posts: 84
    edited April 2012

    I hope your doctors aren't telling you that!  I'm so confident of a good outcome that I'm considering chucking my last 2 chemo treatments. 

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  • sweetbean
    sweetbean Member Posts: 1,931
    edited April 2012

    i'm agree with Cool Breeze - those studies are way outdated.  There are great drugs now, plus vaccines that are in clinical trial.  

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  • Eileenohio
    Eileenohio Member Posts: 460
    edited April 2012

    My diagnosis is exactly the same as yours.  My surgeon and my medical oncologist have told me that this is completely curable.I have completed 3 TCH treatments,then I will do radiation and continue with herceptin until Feb 2013.  I am 73 yrs old and plan to be NED for many many years.  Hang in there..

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  • divina913
    divina913 Member Posts: 45
    edited April 2012

    Yes i've had 2 lumpectomies..doing chemo!! Just finished AC (4cycles)..Now getting ready to do TH (4cycle of T & a year of Herceptin) as of right now that's the plan..we'll see!! Did you have any major side effects from Herceptin?

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  • divina913
    divina913 Member Posts: 45
    edited April 2012

    Thx Sheila,,I'm so glad for you!! Congrads!!! I will look into that thread & read up!! Good to hear good news for a change ;)

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  • divina913
    divina913 Member Posts: 45
    edited April 2012

    Thx Caya..I've had 2 lumpectomies!! Just finished AC (4cycles) & getting ready to start TH.

    Supposedly 4cycles of T & a year of Herceptin...how long did you have to do Herceptin & any side effects??

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  • divina913
    divina913 Member Posts: 45
    edited April 2012

    Hi Melly,,No my doctors aren't tellin me that. Just been reading alot!! Wow,,i'm glad you have that

    confidence!!! I hope your right. Yes i'm starting TH next week. T 4cycles & H for a year!! then i think radiation/tamoxifen..we'll see,,Thankx for your comment ;) good luck!!

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  • divina913
    divina913 Member Posts: 45
    edited April 2012

    Thx Eileenohio,,,I'm glad your doing great!! I'm trying to hang in there. I'm so glad to hear other women in the same DX as i am & having good outcome. It gives me HOPE!! Thank you for commenting here!!

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  • sheila888
    sheila888 Member Posts: 25,634
    edited April 2012

    divina....I had the same chemo regimen

    Herceptin 1 year once a week.....since this is not really a chemo but maintenance drug....your hair grows and i didn't have any SE from Herceptin except the nails got very brittle and ridgy.

    Are you having once a week or every 3 weeks?

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  • Eileenohio
    Eileenohio Member Posts: 460
    edited April 2012

    Hi Sheila,,  Wondering wht some do herceptin every week and others every 3 weeks. Do you have any idea why?  I have my 4th treatment next wednesday,I am going to ask the doctor about this. As of now I am scheduled every 3 weeks after my last chemo at the end of May. You are and continue to be my inspiration..

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  • sheila888
    sheila888 Member Posts: 25,634
    edited April 2012

    Hi Eileen....When they approved Herceptin for stage I in 2005 i was one of the first patients to receive it.

    And it was once a week for 52 weeks.

    The only difference that i'm aware of is the dose is higher if it's every 3 weeks.

    good Luck.

    Any questions please ask.

    ♥

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  • divina913
    divina913 Member Posts: 45
    edited April 2012

    Sheila,,i'm starting TH 4/18 & for now i'm on a 15 day cycle due to Taxol..need 4cycles of that.

    supposedly after Taxol,,Herceptin will be every 3wks for a year.

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  • Caya
    Caya Member Posts: 971
    edited April 2012

    Divina, I'm in Canada, and at the time of my DX (Oct. 2006) the protocol here was 3 x FEC (like AC), followed by 3 x T (Taxotere), then I had one year of Herceptin - every 3 weeks - 17 times total.

    The standard infusion for Herceptin is 30 minutes, but I had mine slowed to 60 minutes and felt better.  I got the Herceptin every third Thursday, and for that first weekend after the infusion, I was exhausted.  Slept most of Thursday and Friday, napped on Saturday and Sunday. My nails were fine during Herceptin.  I had a lot of UTIs during chemo and Herceptin.  But everyone is different, and in general Herceptin was pretty easy to tolerate. 

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  • stephib
    stephib Member Posts: 10
    edited April 2012

    Divina-

    I am also HER2+ and it looks like our treatment schedule is about the same. I chose a double mastectomy with immediate reconstruction because of my age and my treatment schedule is ACx4, THx4, Herceptin for a year and Tamoxifen.   I also start my TH next week.  I'm 33 and when I first read about my diagnosis I thought "no way I see retirement".  Luckily, if you read the most recent research my opinion has changed drastically!!!!  I teach chemistry and biology so I'm weird and like to read the very technical journal articles.  To be completely honest my opinion now is thank goodness I'm HER2+!!!  With this diagnosis at least I know there is a great treatment schedule with great results!  For the majority, and yes everyone is different, Herceptin is close to a miracle drug.  It can mean "cure" for early stages and extend the survival for later stages by 10, 15, 20 years, and that could be higher because those ladies are still kicking!  Try not to think negatively!  Before I found out the details of my diagnosis I was hoping for my oncologist to say "we'll just cut it out and then it will never come back".  That would of been nice, but is rarely the answer anymore.  I feel lucky to know that a drug that targets our specific type of cancer has been made.  Our prognosis is good now and with medical technology getting better everyday I plan to be a cancer survivor way past retirement!!!  Try to think positive, it could help our bodies kill any of those stupid cancer cells that may have escaped!!  Good luck to you!!!

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  • divina913
    divina913 Member Posts: 45
    edited April 2012

    Thx Stephib,,,Yes your right at least there's something to specifically target HER2 rather than just chemo. I do try very hard to think positive & it helps to hear positive thoughts from other women like you to keep the moral UP!! It's good to see other women whose been through this journey & like you said "still kicking it!!" OMG it looks like we so have the same time frame here from when we got diagnosed back in 2011 & treatment plan is baout the same. I was diagnosed Oct 2011..had (1) biopsy, (2) lumpectomies. Starting TH 4/18/2012 wed..4cycles of Taxol & 1yr of Herceptin. WE should keep in touch & hopw everything goes well. OH what the HECK,,It will go just FINEEEEE!! ;)

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  • shadow2356
    shadow2356 Member Posts: 393
    edited April 2012

    Divina-

    When I was first diagnosed I had a doctor tell me that my hormone negative status and Her2+ was the worst case scenario. I was blown away. It turns out that was old info.

    Herceptin is a wonder drug and with your hormone positive status you have a lot more available to you.

    Don't listen to any naysayers. Look at all the survivors on here and know you will be one too!!

    You have a lot to fight with.

    I was diagnosed in 8/09. I have finished all my treatment and I am back to feeling great. I go to the breast surgeon once a year and the onc 3x a year. They all say, just go live your life. You will be in this spot soon too.

    Feel good!

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  • divina913
    divina913 Member Posts: 45
    edited April 2012

    Hey Shadow..Thanks for you kind words of support!! Needed to hear that. I sure hope & pray i get

    to where all you survivor ladies are at. It's so hard to stay focus & positive. I think the mental state is alot harder than physical. At least for me that's the case. I do just want my normal life back again!! No wigs, No fake eye lashes, No drawing eyebrows,,etc... Definetly want my taste buds back to normal...;) Thanks again!! Glad your doing GREAT!!

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  • Wendyspet
    Wendyspet Member Posts: 246
    edited April 2012

    Divina-- the mental state was the hardest for me too.  There's that nagging question in the back of your mind "is it all downhill from here?"  Then the next minute you are fine.  Then you are on the internet searching survival stats because you just can't stop thinking about it.  I think most of us go through some kind of a traumatic stress syndrome.  Some handle it better than others.  I don't think I was one of them because I was thinking about it all the time.

    I took a mild anti-depressant when my sister was terminal (with melanoma).  I stopped taking it before my diagnosis, but it doesn't mean I shouldn't have been taking it through my treatment.  Maybe you should discuss this option with your oncologist?  Treatment is hard enough without adding worry to it...

    By the way, my cousin used to be in the police department in Kenner.  But he moved to the Phoenix area a few years ago, right before Katrina.

    Good luck and good thoughts!

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  • divina913
    divina913 Member Posts: 45
    edited April 2012

    Hi Wendy..how ironic is that your cousin actually lived here in Kenner!! That's interesting!! I've been in Kenner for about 25 yrs. My sister advised me to stop or rather back off in reading too

    much info from the internet. Some of the women in here are also saying that some of the stuff on internet aren't up-dated too. Yes i've read alot of depressing statistics,,BUT it was from prior to Herceptin. Thanks for your in-put & words of encourgement!! Whenever i get scared & negative, i

    just try to put it in Gods hands....;);)   

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  • Imsevenyearsout
    Imsevenyearsout Member Posts: 9
    edited April 2012

    I'm seven years out for a triple positive and feeling fine.  I got herceptin every week for 12 weeks while i also got taxol, then herceptin every 3 weeks for a year........

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  • divina913
    divina913 Member Posts: 45
    edited April 2012

    hey ladies,,unfortunately i tried to do TH last wed 4/18/2012 & had an anaphalatic reaction to Taxol so we had to stop that treatment. Tried to do Herceptin after i've cleared up from Taxol,,same thing happened. My Onc thinks that i had the allergic reaction from Taxol,,not so much from Herceptin. They've pre-medicated me prior to treatment because they've anticipated me having a reaction from the start.. Pre-medicating me didn't work!!! Wheeewwww..thought i was a gonner!! I'm setting up 2nd op @MDACC in Houston now to get 2nd op. Please,,if anyone else had hit this same BRICK WALL like i have,,i'm open for any suggestions on what to do next. I figured i can't go wrong by going to MDA. Thank you ladies!!!

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  • sal343
    sal343 Member Posts: 1
    edited April 2012

    Had same chemo regimen and then Herceptin/Taxol 12 weeks.  Had muga scan after 1st large dose of Herceptin in December.  My ejection fraction numbers (heart strength, I think) went from 55 to 43 to 37.  35 is considered low.  Oncologist stopped Herceptin til May when I have new muga to check heart strength to see if I can continue Herceptin.  Diagnosed one year ago.  Doing well so far.  Hoping for more herceptin treatments to end of one year if heart holds up.

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