Am i doomed too?

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magentagirl
magentagirl Member Posts: 101
Am i doomed too?

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  • magentagirl
    magentagirl Member Posts: 101
    edited May 2008

    I was just feeling miserable and scared about being her 2 + It finally sunk in that my chances are not so good and who do I talk to about this? I logged on and saw the Am I Doomed? and all the responses but it just isn't helping. I'm starting the CHT on June 11 and I was so looking forward to it until I read that Her 2 positive cancer does not respond well to chemo and only 25% of people are helped by Herceptin. I want to whine to my sister but I don't want to scare her too. Any help?

  • KathyL
    KathyL Member Posts: 534
    edited May 2008

    Hi magenta!

    I'm not sure where you read that Her2 BC doesn't respond well to chemo-- I've heard just the opposite.  I finished TC in March and am now doing herceptin every 3 weeks until January.  My onc gave me an excellent prognosis and said my chance of recurrence is "miniscule".  Keep your chin up and think positively-- attitude is everything with this fight!

  • Amers
    Amers Member Posts: 82
    edited May 2008

    Her2 is not bas news--yes it is more agressive-but there are more ways to fight it-

    I am a stage 4 Her2 +--finished 8 rounds of taxotere and weekly herceptin, had surgery and radiation--

    I was diagnosed last June with stage 4 and was Clear by January--

    unfortunately it came back again now-but I responded really well to the taxotere-

    Please don't worry--you are a Stage 1!!!!  This will all be ancient history for you soon--

    Amers

  • magentagirl
    magentagirl Member Posts: 101
    edited June 2008

    Thank you Kathy and Amers. i don't remember where i read that about the chemo, but I am glad to hear it is wrong. unfortuneaty I am one of those people who can read a hundred positive things but the one negative is what I take in. I am waiting, waiting, waiting to see my oncologist at the HMO. They are short 2 docs and people have to wait 5 to 8 weeks for an appointment! I am going to file a grievance and have been to an outside onc once. I am so glad for this website.

  • Anonymous
    Anonymous Member Posts: 1,376
    edited June 2008

    Magenta, I am HER2 +. I had chemo first. The primary tumor was 3.1 cm and a tumor in the lymph nodes was 2.4 cm. I went through chemo, and then had surgery the other day. The surgeon "didn't see anything in there." Both tumors were gone. Poof. HER2 + tumors are often EXTREMELY susceptible to chemo.
  • DebbieB
    DebbieB Member Posts: 161
    edited June 2008

    Magenta, I was dx'd in 2001 with 2.4 cm, HER+++, ER-, PR-, Stage 2, Grade 3.  Here it is almost 7 years later and I am still NED.  I did 4 rounds of AC chemo and that was it.  Herceptin wasn't offered back then unless you were Stage 4.  So...NO...you are not doomed!  I know how you feel because being told you are HER+++ is scarey.  It wasn't until I was about 3-4 years out that I got up the nerve to ask my onc if he had any HER+++ patients who had never had a recurrence.  I had always been terrified to ask because everything you read about HER+++ was so depressing.  But when I did finally ask, he told me .....ABSOLUTELY!  Being HER+++ does not mean an automatic recurrence.

    Debbie

  • mimi1030
    mimi1030 Member Posts: 700
    edited June 2008

    Hi there,

    My mom is highly Her2 and she gets herceptin for her mets, if anything is hard to treat, mets would be it.  She went from having widespread and extensive mets to having one tiny spot left.  All thanks to herceptin.  Actually, on the contrary, the more Her2 that is expressed the better you will respond to Herceptin.  My mom started out at Stage 1 in 2004, herceptin was not available for her to use then.  So 4 years later she is now able to get it and she is doing fine.  Her2 is scary, its more aggressive yes, but I have never heard that only 25% of people respond to it.  A lot of women are in remission with mets and have been for years because of herceptin.  Dont let anyone scare you about your diagnosis, afterall cancer is cancer, regardless of its mechanism. 

    You will do just fine and Herceptin is a fantastic drug, I give it credit for my mom's 360 in her mets. 

    Take Care Michelle

  • nitewind
    nitewind Member Posts: 64
    edited June 2008

    Hi Magenta, When I was diagnosed two years ago, Her2+++ my doc told me "the bad news is you are her2+ and the great news is you're her2+! Confused me to say the least, but he was so excited about herceptin and the great results it was showing and told me I was really blessed to have it. I finished my year of herceptin this past December, I took it every week for a year. For me the weekly dose was much easier on me and I had absolutely no side effects from it! I had my 3 month check up in early May and I'm doing good so it must have done it's job. I've read nothing but good things about it so I'm very positive.

    Good luck to you, I'm sure you'll do great!

    Hugs

    Susan

  • kimbly
    kimbly Member Posts: 398
    edited June 2008

    My doctor said the same thing Susan, ... bad news is  you are Her2+ and good news is you are her2+ .. funny huh.. oh well

    On that note.. I had two tumors 1.2 and 1.8 in same quadrant and so close they looked like a dumbell, because of the her2+ I had chemo first to shrink the tumors.  I had taxol, carboplatin and herceptin every 3 weeks for 6 treatments and now I continue with the herceptin every 3 for the remainder of the year.  I had an u/s midway through this chemo and poof the tumors were gone!!!! I was told that looking at the u/s no one would have suspected I had cancer at all so chemo does definately work as well as the herceptin!  Being her2+ scares me too because of the aggressive factor but on the other hand thank goodness for this wonderful drug! So think positive this will work and you will come out of this just fine!!!! Good Luck 

  • Kerry1000
    Kerry1000 Member Posts: 103
    edited June 2008

    We have a similar diagnosis.  I also never heard those discouraging statements about chemo and herceptin - they don't sound correct to me.  Bot my onc. and my own research show a very favorable prognosis for us w/very small chance of recurrence.

  • oldcat46
    oldcat46 Member Posts: 53
    edited June 2008

    I just had to jump in here.  When I was diagnosed as being Her2+, it really made me feel down.  I knew from things I'd read that it was aggressive.    Then my onc talked to me about it and assured me that Herceptin in early stage breast cancer reduces the chances of recurrence by 52%.   Add that to chemo and radiation and that number goes way down.  I was told that Herceptin together with chemo worked better than just Herceptin alone.

    Magentagirl, please stay positive because you have every reason to.  Beyond Herceptin there is Tykerg, another targeted-therapy treatment, and there will be others.  I haven't had any side effects from Herceptin.  I did lose a toe nail but my doctor says that's a left-over se from Taxol.  Otherwise, I don't mind getting Herceptin at all. 

    I'll keep you in my prayers for June 11 -- keep positive thoughts and you'll do fine.   You are NOT doomed!!! 

  • Fitztwins
    Fitztwins Member Posts: 7,969
    edited June 2008

    Herceptin cuts recurrence by 52%, do you know how huge that is in the cancer world? Closest thing they have had to a cure EVER.

    you are not doomed. I think Herceptin gave me a chance.

  • SusanG
    SusanG Member Posts: 110
    edited June 2008

    Magenta,

    My mother was dx 8 1/2 years ago with stage II, HER+. She had a unilateral mastectomy, was unable to do reconstruction because of a clotting disorder, but had chemo and rads that took about a year to complete. She's now nearly 8 years post treatment, and is still NED. Even though she had 9 lymph nodes removed (back in the day before the sentinel node biopsy) she has little trouble with her arm, feels and looks great.

    Right now, with my DX being new as it is (dx 4/23, stage I, E+. P+, HER-, don't know about nodes yet 'cause SNB was this past Friday) she is one of my biggest supporters.

    There is always hope. Don't lose sight of it!

    Hugs

    Su

  • dalycity
    dalycity Member Posts: 248
    edited June 2008

    I've also read that Herceptin changes diagnose. 

    There was a woman researcher who after years of study on this medicine, that when it was announced to the public the positive results of Herceptin, broke down and cried because they had not suspected that this drug would work so well!  Thank God for this wonderful drug.

  • sharont68
    sharont68 Member Posts: 124
    edited June 2008

    I am Her+ also. I've already been through dense dose A/C and just finished 12 weekly tx of Taxol on 22 May. I was supposed to start Herceptin with Taxol but the A/C did some damage to my heart. I am now taking Coreg CR and Lisinopril daily. My only concern is that I might miss out on the advantages of Herceptin because I will be starting it  so late. I see my cardiologist on 18 June and then my onc 24 June. Hopefully, my heart has healed enough that I can finally start Herceptin sooner than later.  All I can say is that I've heard nothing but good stuff about this drug! I'm keeping a positive attitude toward all of this. You just keep that positive attitude and let Herceptin do it job! Take care.

  • CaseyDoodle
    CaseyDoodle Member Posts: 144
    edited June 2008

    Magentagirl,

    I am starting Taxotere/Carboplatin/Herceptin tomorrow.  My doctor ran the software someone spoke about early and my statistics changed drastically.  I went from a 40-50% recurrence rate to 8-10%.  Please ask your doctor to run the program for you.  It is truly eye opening. 

    Good luck and I'll be thinking about you!

  • boxill221
    boxill221 Member Posts: 3
    edited August 2008

    Hi Kimbly, Your diagnosis sounds a lot like mine. I have to say this Her2+ thing freaks me out to the max!!! I can't stop worrying about that stupid little word Her2+, why couldn't it just be negative? Why couldn't I just get a simple breast cancer if I was to get one? I know all this sounds ridiculous, but I am so lost tonight, so consumed with fear and anxiety and my precious husband tries but can never say the right thing, really nobody can. I was diagnosed on 7/17/08 with IDC, er+, her2+, 1cm, stage one, node negative, so all the great docs applaud me for having early breast cancer and say I'm lucky, but nothing about this feels lucky to me. Anyway, just having a really bad night, tonight is my one week postop date for my double mastectomy, and looking at myself in the mirror is more traumatic than I ever thought it would be. On top of this, I will be starting chemo next week and I am so so so scared of that, just typing it brings me to tears. Thanks for your time and I pray that I will be typing an anniversary date one day. God bless, Jennifer

  • Jenniferz
    Jenniferz Member Posts: 541
    edited August 2008

    Doomed? NO!  Vigiliant is what we will be . I just cleared my send year survivorship, did not receive any chemo or Herceptin, nor rads.  I had a mastectomy, and at that time, because of the size of the tumors (less than a mm), I did not qualify for anything.  I wish that I could have had, but all drs. said that there was not much difference in the outcome.  According to them, in five years there's a <5% chance of reoccurance.  Let's hope they're right.

    Here's hoping all is well with you, and you are continuing to heal without problems.

    Jennifer

  • Brenda_R
    Brenda_R Member Posts: 509
    edited August 2008

    to sharont68,

    Because of heart toxicity concerns, I waited until after 12 weeks of chemo and 7 weeks of rads, plus another 4 weeks into between chemo and rads, to start my Herceptin, and things have turned out well for me.  

  • Misty1
    Misty1 Member Posts: 272
    edited August 2008

    Jennifer-I just happened to read through this thread because I am HER2+.  I saw that you were starting chemo next week.  I am in a group on the Chemo thread called "Aug 08 Chemo Anyone."  I started TCH x 4 on July 31st.  I should have the last one on 10/2 and then will just get Herceptin for the remainder of the year, every three weeks.  The group is really growing, and we are having a great time reporting how the treatments are going.  Please feel free to join us on that thread!  It might help to lessen your anxiety.  Hope to see you there!

    ~Misty

  • saleboat
    saleboat Member Posts: 71
    edited August 2008

    No you aren't doomed, but I certainly remember feeling that way when I was first diagnosed.  I'm so sorry you have to go through this too.

    I had 15 positive nodes and was triple positve.  I did A/C, T and Herceptin.  That was in 2005.  I'm still here, although not on the boards much anymore.  Too busy living life just as I had always intended.

    Best of luck.  

     Jen

  • noellech
    noellech Member Posts: 86
    edited August 2008

    My onc told me that with herceptin that Her2+ actually ends up better off. The problem is that you have to go throught the treatment. I have seen studies that ACTH and TCH can both reduce recurrence by more than half. That is the best chemo treatment around.

  • Nancy-SanDiego
    Nancy-SanDiego Member Posts: 127
    edited August 2008

    Hello HER-2 gals.  I was dx'd Oct 2005 and remember the pathologist telling me in a very sad voice that I was HER-2+.  When I asked what that meant, he touched my hand and after a very pregnant pause, said "its very serious."  Well, he apparently didn't know about Herceptin, our silver bullet.  I started taking it in March 2006 and did so for one year with some time off for bad heart behavior.  I was one of the few who experienced Stage III Cardiomyopathy as a result of my chemo.  It was dx'd 3 months after I started Herceptin and may have also been the result of 12-weeks AC before Herceptin.   Just make sure you get your MUGA's or your echos regularly.  I had an echo at least every 3 weeks for the 9 months I was on Herceptin following CHF issues, and I was devastated on the few occasions when my cardiologist felt I needed to wait.  I will be on Coreg and Benazapril for the rest of my life, but its an OK tradeoff to reduce my recurrence rate of cancer from 80% to 50%.  I feel most fortunate to live in a time when we have major weapons like Herceptin to help us win the battle.

    PS  Filtering information can be a real challenge--it can be so scary and is often so outdated or just wrong.  You might want to check out HER Connection--great site. 

  • Chris51jon
    Chris51jon Member Posts: 7
    edited September 2008

    My sister is HER2+, she had a masectomy, radiation, chemo, Herceptin for 1 year and it has spread. She has been on an  oral chemo, 2 different ones and it is still spreading. She recently started an IV chemo and has been doing an IV bone therapy. She told me this was the last treatment available. She is not doing well. Has anyone had negative Herceptin results?

    All together my sister has been fighting this for 3 years. 

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