Statistics and herceptin

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  • vhqh
    vhqh Member Posts: 535
    edited October 2008

    I was just diagnosed with brain mets, I have read that Herceptin works so good that it doesn't leave the cancer anywhere to go but the brain which it can't penetrate, my oncologist also said the same thing.  Other than the brain I am doing wonderful, my single bone met is healing and there is no other sign of progression after a year.  There is still some question on how effective Tykerb is but I would strongly recommend a second opionion on the Herceptin if your onc is saying it doesn't work well, I believe there is plenty of evidence to the contrary.

  • DianaT
    DianaT Member Posts: 532
    edited October 2008

    I would also request a second opinion about taking Herceptin.  my onc said that he called all of the Her2+ patients back in and asked them if they were interested in taking the treatment it was that valuable.  There is a lot of literature that I would want my oncologist to read up on if that statement was made to me. 

  • Brenda_R
    Brenda_R Member Posts: 509
    edited October 2008

    Bonnie02, I'd like to know where your onc got his info on Herceptin.

    True that it's fairly new, but it's been in use for about 10 years now and the overwhelming info is that it's our miracle drug (for her2 positives) and works well in most patients.

    True that it's hard on your heart, but that's why they monitor that with muga scans.

    I had a muga before I started herceptin, and it was 56%. Close to halfway through treatment it was 55%.  If it drops below 50 they will stop herceptin.

    Usually any "damage" recovers over time.

    I'm her2+++, and the main thing (imo) that is keeping the beast at bay is the Herceptin. It's like an insurance policy.

    I would definately get a second opinion, since Herceptin is one of the only things that's been proven to fight this very aggressive form of breast cancer, in most cases.

  • EGAL
    EGAL Member Posts: 539
    edited October 2008
     I finished Herceptin on May 13th, this year.  THought all was well...just dx'd with brain mets.  Haven't have bone, liver or lung scan since May.  Never expected this but I hope the the other body scans will be clear.  Only one thing at a time!
  • GramE
    GramE Member Posts: 5,056
    edited October 2008

    I spoke at length with my onco on Thursday.  The vaccine protocol is very much up in the air.  Just exactly what factors will be needed to determine who will get it.   Age, pre or post or peri menopause, before surgery or after, node involvement, ductal, tubular, lobular, etc, etc.  

    Mega hugs Egal.  Here's hoping for clear scans for you.   Herceptin is newish, but has proven to be helpful for the time it has been available.  There is no cure all, but I am going to use every bit of ammunition out there to fight this beast.   I would get a second or even third opinion.   Muga scans are used to monitor heart function and I have been told that radiation to the left side can and often does cause more permanent heart damage than herceptin and/or chemo.    

    Such a mind boggling amount of information to sort through.   I write down my questions and IF your doctors do not want to take the time, find another one.  They are the "experts" and who else should you ask?   The dumb thing is to NOT ask questions.  A wise person knows when to ask the expert.  MY opinion.   I do not discount the experience and suggestions of us who are there and going thru this either.   But remember, each of us is a wonderful and unique individual.  

    Hugs,  Nancy 

  • ibcspouse
    ibcspouse Member Posts: 613
    edited October 2008

    Below is a section of a E mail on another site.  It is from the drug company's product development division.  I have not researched this yet, but will ask at the Breast Clinic at MD Anderson next week when wife goes for treatment.

    Oncologists at the University of Texas M.D. Anderson Cancer Center decided to see if Herceptin has since changed the reality of a HER2-positive prognosis.  They conducted a retrospective analysis of overall survival for more than 2,000 metastatic breast cancer patients treated at their hospital. The analysis, which they presented at ASCO, showed that, after controlling for patient and tumor characteristics, woman with HER2-positive disease who received Herceptin had a 44 percent reduction in the risk of death compared to women with HER2-negative disease. In other words, according to this analysis, with Herceptin treatment available, you are more likely to live longer if your tumors are HER2-positve than if they are HER2-negative.  Wow!  Thanks to Herceptin, what had been the really bad news, being HER2-positive, is now the lesser of two evils.  For many women, Herceptin turned the historical prognosis upside down.
    Rewriting the Textbooks

    Many of you have heard me say that our mission at Genentech is to rewrite the medical textbooks. I sometimes wonder if employees really, I mean really, believe that we not only can do that, but are doing that.  Robert Weinberg's oncology textbook "The Biology of Cancer," a very well-respected oncology research textbook, indicates that HER2-positive status 'is correlated with a poor prognosis for the breast cancer patient.'

     
    Overall Survival by Trastuzumab Treatment Groups: According to a retrospective study by oncologists at the University of Texas M.D. Anderson Cancer Center, with Herceptin treatment, women with HER2-positive breast cancer had a 44 percent reduction in the risk of death compared to women with HER2-negative breast cancer.
    Thanks to Herceptin, that text, currently in its first edition, also says, 'Use of the Herceptin antibody has resulted in extension of the lifespan of breast cancer patients whose tumors overexpress HER2 protein.' For the next edition, perhaps Dr. Weinberg will add something like, 'so much so that women with HER2-positive cancer who are treated with Herceptin now have a better prognosis than women with HER2-negative cancer.'
    Of course, with the approval of Avastin earlier this year for the treatment of HER2-negative breast cancer, and with other ways we're targeting HER2 and related receptors, we're working hard to improve survival for either form of breast cancer, and to make the prognosis less frightening for all breast cancers.
    It's important to consider that the study by the M.D. Anderson oncologists looked only at metastatic disease, not at adjuvant disease, which is where I'm convinced we have the greatest opportunity to improve survival. I'm looking forward to analyses of the accumulating long-term data on Herceptin, which was approved in 2006 for treating HER2-positive breast cancer in the adjuvant setting; and also for data on Avastin, which we and Roche are currently investigating in Phase III clinical trials for the adjuvant treatment of HER2-negative breast cancer.  I'm hopeful that we will begin to see data that will allow us to use that elusive word: 'cure.'
    We caused the rewriting of many a textbook when we first launched Herceptin 10 years ago.  Now, as we learn more and more about the continued impact of Herceptin, additional textbooks need updating. With the many approaches we are taking to fight breast and other cancers, as well as our work in immunology, neurobiology and infectious disease, I'm excited that we're going to continue to make medical textbooks out-of-date. 

  • lisa39
    lisa39 Member Posts: 255
    edited October 2008

    Thanks for the info IBCspouse.  I look forward to hearing any new information you can find out.  We HER 2 + patients need all the good news we can get!

  • fightinhrd123
    fightinhrd123 Member Posts: 633
    edited October 2008

    My stepfathers work does all the printing for genentech.  He had to meet with all the exectutives last month and he told them about me.  They gave him the number of one of the Drs who works with herceptin to talk to about my case.  She said how amazing the results were of herceptin outcomes, and how there is soon to be a new better herceptin :)  Well i'm not sure exactly how they described it, but they were extremely encouraging, i think they said super herceptin? 

  • DianaT
    DianaT Member Posts: 532
    edited October 2008

    IBC spouse~ thanks for sharing the email.  Fightinhrd1 ~ thanks for that info too!!

     Thank you everyone for sharing!

  • GramE
    GramE Member Posts: 5,056
    edited October 2008

    It makes me happy to know there is Herceptin and it has been so successful in this disease.   There have to be side effects when you put such powerful things into your body, but the eventual outcome outweighs them - in MY opinion.  The body is a marvelous wonder and the more we know, the more amazing it is.  

    Hugs and Blessings,  Nancy 

  • kimbly
    kimbly Member Posts: 398
    edited October 2008

    I would definately get a second opinion Bonnie...I am having my 3rd muga scan tomorrow and so far so good. Herceptin to me is a life saver so I would be suspicious of a dr saying it was a choice if you are Her2++++++

  • HensonChi
    HensonChi Member Posts: 357
    edited October 2008

    I am also on Herceptin.  I go to Rush University Medical Center in Chicago.  I asked my doctor if it has her/neu +++++ and she said at Rush it is either Her/Neu or it isn't.  She said that they don't classify it any other way, and that herceptin is just the drug to fight it.  I am very thankful for the Herceptin, and the fine doctors that I have!

  • Bonnie02
    Bonnie02 Member Posts: 193
    edited October 2008

    Hi everyone,

    Thanks for all the replies although I was the one to make the decision not to have Herceptin.  The reason being that the oncologist said that my first muga scan was not good and after the chemo they checked it again and it was fine. I don't understand that and he said it was up to me if I wanted to chance the heart "well" that to me didn't sound good.  He also said that Herceptin is usually given with chemo and does work a little better at that time but to give me it alone he could not say whether it will help at all.  I got the feeling that he was turning me away from the Herceptin and that is why I opted out of having it.

    Yesterday I saw my GP and talked to him about it and he said he was unable to tell me what to do but he said if it was his mother or grandmother he would tell them to take the Herceptin because as he said if the cancer comes back you are dead (that was his exact words) but he said if their was to be any heart trouble that they have lots of medications to help with that.

    That changed my decision entirely, I am going ahead with the Herceptin and feel good about it.  I was wondering if anyone has had many side affects from the Herceptin.

    Thank you all that responded, you have no idea how much it has helped me.

    Bonnie

  • kimbly
    kimbly Member Posts: 398
    edited October 2008

    I am breathing a sigh of relief that you changed your mind Bonnie.  I have been told as a HER2+ patient that herceptin is the MOST important thing for me right now.  I found out today my last one will be Jan 2. I get the herceptin alone now every 3 weeks.  I had it with my chemo from Dec 2007 until March... I can say that the chemo and the herceptin together shrunk my tumor to nothing in just a few treatments.  I cannot understand still why your dr would advise against it unless your heart  scan results are really bad.  They do periodic muga scans to make sure everything is okay, I have one tomorrow as a matter of fact. 

  • coonie
    coonie Member Posts: 7,618
    edited October 2008

    I've been doing Herceptin since February and will finish in January 2009. As far as I can tell, there haven't been any side effects, and my muga scans have all been good. I'm very thankful for Herceptin!!!! I think it's a miracle drug. Can't wait to watch the moving this Saturday night on Lifetime about it. Good luck to all of you!

  • lisa39
    lisa39 Member Posts: 255
    edited October 2008

    The only side effect I've had with Herceptin is a drippy nose for a couple of days post-treatment.  It's sooo minor, it's barely worth mentioning.  I'm sure you'll do fine.

  • coonie
    coonie Member Posts: 7,618
    edited October 2008

    Oh yeah! How could I forget the runny nose ??Undecided It is pretty aggravating.

    I just noticed in my previous post I typed "watch the moving"----I meant to say "watch the MOVIE".....I'll just blame it on chemo brainKiss

  • kimbly
    kimbly Member Posts: 398
    edited October 2008

    I get the drippy nose as well forgot to mention that.  I can't wait to watch the movie either!  

  • DianaT
    DianaT Member Posts: 532
    edited October 2008

    I had my treatment again today.  I don't even have a drippy nose from the herceptin!

  • Estepp
    Estepp Member Posts: 6,416
    edited October 2008

    Hi all,

    I think we should all check in after or during the movie Saturday night just to give each other hugs..:)

    Love

    Laura

  • DianaT
    DianaT Member Posts: 532
    edited October 2008

    Laura ~ I will keep a spot open on the couch next to me you are more than welcome to come sit here!!  I think I will need a lot of hugs Saturday night.  I got a bag today and there is a DVD in there, I think it is the movie but I don't want to watch in until Saturday. I need to emotionally prepare myself!

  • Estepp
    Estepp Member Posts: 6,416
    edited October 2008

    me too, and I totally understand! I wish I could come over.. but it would take 10 hrs to get there...lol..... my mom is in the hospital... and I will probably sit here and watch it alone... hubby will watch... but it might be too hard for him...

    longggg story...... Just look at it like... a savior... some time bought here... I will cry happy tears I am sure!

  • DianaT
    DianaT Member Posts: 532
    edited October 2008

    I sent you an email Laura ~ I have a $300 voucher from Southwest airlines, LOL!!!

  • Estepp
    Estepp Member Posts: 6,416
    edited October 2008

    LOL... my ocno would NEVER let me travel now.... heck, I cannot even go into the hospital to see mom.... But hang on to that voucher.....:) Told Todd we WERE coming to TX at some point !!! :)

  • suemed8749
    suemed8749 Member Posts: 1,151
    edited October 2008

    I thought everybody on this thread would like this quote. My husband and I stayed in a hotel Sunday night and received the complimentary USA Today Monday. Glancing through it, I found a whole page on bc and reconsturction. One of the articles - "A new age in cancer care" - was about Herceptin and began this way: "Barbara Bradfield has lived to see dramatic changes in breast cancer. When she was diagnosed in 1989, Bradfield's tumor - which produced an overabundance of a protein called Her2 - was considered especially deadly. Today, women with tumors like hers have some of the best survival rates in breast cancer." Woo hoo - made my day!

  • Estepp
    Estepp Member Posts: 6,416
    edited October 2008

    Whaoooo whaooooo..... always need to hear that!

  • GramE
    GramE Member Posts: 5,056
    edited October 2008

    Excellent news, Sue.  From all I have read, it is the wonder drug for us Her2 ladies. And if I remember, only 20% of BC is her 2 positive. 

    Tx # 10 of tax/herceptin yesterday. Legs feel like lead and some minimal bone pain. Tylenol is working and I got 6 hours sleep even with the post chemo steroid buzzzzzzz.    2 more tx to go and in 13 days I will be done with chemo......!!!!!!    Then surgery consult on Nov 6.   The tumor has shrunk drasticallly, and I do see the end of another phase of this journey.    

    Laura, I opted out of my dil first concert of the season at the National Cathedral on Sunday.  My son gets season tickets and could not get aisle seats. They use OLD wooden folding chairs and with my long legs, I need space to stretch them out.  I can sit on my coat to pad the tush, but being next to someone who could be coughing, sneezing, etc is not good.   That is where the aisle seat would be best.   And all the pieces are about death...  Sorry about your mom.   Hope it is not too serious. 

    BTW, by the way, I asked onco about the flu shot and she says to get it.  Primary will not give until mid november since the weather is so mild longer here.   Yesterday was 80 ( a bit unusual )  and the next 5 days are mid 60's.    I am tempted to carry masks to give to others who are hacking and sneezing all over the place, once flu season begins...   

     I think I will opt out of the movie. Maybe go out to eat after early bird bingo, if my legs hold up and especially IF I win...    HUGS, have a good day and weekend.   Nancy

  • Estepp
    Estepp Member Posts: 6,416
    edited October 2008

    Thanks.. my mom should be able to come home tomorrow. She has COPD and has or "had" 15 pds of fluid they got out of her in the past few days. I feel so bad for her. She is only 64 and on oxygen the rest of her life. Smoking. She quit when she was 50 ish. , but she was a HUGE smoker... 2-3 packs a day and now the emphysema is pretty bad. :(

    I hope you all have a great weekend.. I am going to spend it chillin' with the hubby... We have lived in this home 14 yrs and the boys ( sons) destroyed the doors. We have 18 doors. So hubby has replaced 2 so far and 16 to go..LOL... he might start that job up again this weekend. He wants to get all the doors and frames done by next spring. Then , I suppose we'll talk carpet...LOL  If we did not live on 3 acres in a really great spot.. I"D JUST MOVE!! LOL..

    Take Care all! I look forward to a discussion after the Lifetime movie Sat!

    Laura

  • coonie
    coonie Member Posts: 7,618
    edited October 2008

    I got popcorn for the movie. I can't wait to see it. Hopefully, in our lifetime there will be a cure---or even PREVENTION---from breast cancer........or any kind of cancer for that matter. I just thank the Lord for Herceptin. Had my treatment this morning, and just felt blessed to be getting that nice little "cocktail" :) Hope everyone has a wonderful weekend!!!!!!

  • Estepp
    Estepp Member Posts: 6,416
    edited October 2008

    I know what you mean... as I get the herceptin.. I just stare at it... in awe.... I even took a picture of the bag and put it on my blog....:)

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