Herceptin Heart Attack

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  • vballmom
    vballmom Member Posts: 426
    edited December 2012

    I'm guilty of reading with a bias now.  It's interesting that in some countries, they only get nine weeks of Herceptin.  The Genentech sponsored trial was to see if two years was better than one.  I have never been one to bash big companies trying to make money, but clearly there are monetary considerations at stake in this game.  The PHARE results show that six months may be as good as a year, except in some subsets. "While the PHARE trial showed a trend toward a year being better than six months, the data wasn’t statistically significant. So while investigators couldn’t say that six months are just as good as a year, they also couldn’t say that a year is better." link

    I don't usually take my husband.  He knows enough, but I don't want this any harder on him than it already is.

  • dancetrancer
    dancetrancer Member Posts: 4,039
    edited December 2012

    vball - thanks for that link.  I too am not one to bash companies for the $ associated with cancer tx - but - you can't totally ignore financial incentives either.  I believe Roche funded the 1 yr vs 2 yr study, but I noticed all of the trials being done for shorter time periods of Herceptin are being done in Europe - by countries that (I think) fund their own healthcare.  It's good that there are some checks and balances going on here.  Hoping soon the most effective amount of time for Herceptin will be revealed, but I expect it will take several more years for clarity.  

  • Omaz
    Omaz Member Posts: 5,497
    edited December 2012

    Vball - thanks for the link.

  • leftfootforward
    leftfootforward Member Posts: 1,726
    edited December 2012

    I have been offically off Herceptin for a year. They stopped it about 3 months early due to my heart function.  I was just diagnosed with a recurrance of my cancer (still Her2+) as I have mets in my liver and brain.  I will be speeking with my MO about my options. I am fully expecting to fight to get onto a new Her2 drug or go back on Herceptin.  I don't mean to scare you, but i hope to come back after Fridays meeting with good news. I konw that there are options for us that do recurr and I will share them with you. Hopefully that will put your minds at ease.  This is scary, but even when the worst happens, there are things to do.  

    Hugs to all of you. I will keep you posted.

  • vballmom
    vballmom Member Posts: 426
    edited December 2012

    leftfootforward - I am so sorry to hear this.  I know there are still lots of options for you and appreciate you sharing them with us!  Big hugs!  We're with you!

  • TonLee
    TonLee Member Posts: 2,626
    edited December 2012

    Leftfoot,

    Sorry to read that as well.  Hang in there, and please do come back and let us know how they will proceed.

  • Omaz
    Omaz Member Posts: 5,497
    edited December 2012

    ((((leftfoot))))

  • Alicethecat
    Alicethecat Member Posts: 535
    edited December 2012

    Hi ladies

    In case my experience helps anybody...my ejection fraction improved after starting warfarin, an anti-coagulant drug.

    It wasn't bad to start with - 60-65% on the first echocardiagram - but after being on warfarin it went up to 72%.

    Just wondered if this is something to ask your oncologist about...

    Best wishes

    Alice

  • Kay_G
    Kay_G Member Posts: 3,345
    edited December 2012

    Leftfoot, I am so sorry about the recurrence. Definitely come back and let us know what your onc suggests. I guess a lot of us on this thread will be in similar circumstances if we recur. As a stage 3, I am at a high risk and have wondered if her herceptin would still be an option if i recur since it already damaged my heart. It is very considerate of you to think of us and let us know what happens. Hugs and prayers for you.

  • TonLee
    TonLee Member Posts: 2,626
    edited December 2012

    Kay, I'm with you.  Stage 3 and kinda wondering the same things.

  • ArleneA
    ArleneA Member Posts: 1,309
    edited December 2012

    Leftfoot:  So sorry to hear!  Keep us all posted.  I'm sure there are treatments out there for you!  We are here for you!

  • vballmom
    vballmom Member Posts: 426
    edited December 2012

    Alice, that's quite an impressive improvement.  I will ask about warfarin.

  • bcbarbie10
    bcbarbie10 Member Posts: 319
    edited December 2012

    Leftfoot, good vibes to you. My prayers, too. ((((Hugs))))

  • JulieLynn
    JulieLynn Member Posts: 144
    edited December 2012

    Leftfoot, I am so very sorry to hear of your recurrence.  I don't post often but do keep an eye on this thread.  My herceptin was stopped the end of July/beginning of August due to heart problems.  I completed 28 of 52 but my MO is sending me to the University of Michigan next week for a second opinion about stopping or restarting.  You are in my prayers - Please keep us updated!

  • Richa
    Richa Member Posts: 16
    edited December 2012

    Echo results show a mild pericardial effusion...the doctor doing it says that it is OK...have had three cycles of FEC followed by three cycles of Taxotere and Herceptin...is it a normal effect or something I need to worry about...the EF is at 63%...do suggest am totally lost with this...

  • TonLee
    TonLee Member Posts: 2,626
    edited December 2012

    Richa,

    Your EF is fine, well within normal range.  Just keep an eye on it.  Your Onc will order a MUGA/Echo every 3 months (or should) while you are on Herceptin.  If your EF starts to drop, THEN you might have a  problem with it....until then, you're ok as far as EF goes. 

    As far as the pericardial effusion..that's fluid around the heart right?  I'm not sure Herceptin has anything to do with that.  I'd be curious to know if it did though. 

  • Richa
    Richa Member Posts: 16
    edited December 2012

    Yes you are right...it is fluid around the heart....not sure why that has happened..an after effect of chemo or the Herceptin....I just hope that it is not a risk....at times I find myself nervous....this is all a strange journey and each milestone is a discovery....take care and keep inspiring

  • ArleneA
    ArleneA Member Posts: 1,309
    edited December 2012

    Richa:  What does your cardiologist say about all of this?  I have a mitral valve prolapse and was told it was not an issue with Herceptin but I sure had my share of problems with Herceptin and my EF so not sure anyone really knows.

  • leftfootforward
    leftfootforward Member Posts: 1,726
    edited December 2012

    the results of my echo are in. My EF is 45-50%. MY MO called it stable.  I am not sure that is going to get better. I have been off Herceptin for a year now and on meds as well.  I guess I have to take the good that it isn't any better.  It leaves me  a very fine margin, if any, for some of the stage  4 drugs.  Stable will have to do.

  • ashla
    ashla Member Posts: 1,581
    edited December 2012

    Leftfootforward,



    So sorry that you face this . Sadly It is inevitable that others among us in these forums will face this news as well.

    They are really honing in on the genetics of breast cancer and I believe we will have better targetted therapies very soon. Herceptin doesn't actually help all of us Her2 pos .I can't post the link from my Ipad. I will try to post it later.

    How did your doctors dx your recurrence? Did you have symptoms?

  • TonLee
    TonLee Member Posts: 2,626
    edited December 2012

    Left,

    There is still some chance (according to the literature) that your heart will mend slowly over time.  It's very small, but is there.  I was told after my last test, basically the same thing.  If any improvement was gonna happen, it'd be in the first 12 months for most women.  But there are a few outliers....women who rebound slowly over the course of time.

    I pray you are one of those.

  • leftfootforward
    leftfootforward Member Posts: 1,726
    edited December 2012

    Ashia- no I didn't have any symptoms.  I went in for a regular check and she thought she felt something in my abdomen.  It wasn't anything but she ordered an US.  That showed something in my liver which led to a PET/CT scan. That led to a brain MRI as well.  I am trying to find the positive and count myself as lucky. We shouldn't have found this. I was feeling fine, all my bloodwork was fine. There was no reason to check these things.  I saw a neurosurgeon one week after my diagnosis and had gamma knife done that week.  I am now on Xeloda and lapatinib.  Adjusting to my new life on drugs.  Trying to remain positive. There are some good Her2+ drugs in the pipleline which is good news.  The two I am on are also good.  If these don't work, I can switch to the newer version of Herceptin, but my EF would be an issue there.  Just hoping for the best.

    TonLee- Thank you.

  • ashla
    ashla Member Posts: 1,581
    edited December 2012

    leftfootforward...

    I always think about how they will discover a recurrence. My MO never even did a full body MRI or Pet scan!I wonder if I should be feeling around or something. It seems to me that you are fortunate that you did find it now and you may very well find out you don't need the herceptin  because it only works on some of us her 2 pos's anyway.

    THis BC treatment is becoming so very specialized and it appears that it will be sooner than later.

    here is the link I hope it works...

    SAN ANTONIO – Researchers have taken a first stride toward the goal of developing a gene test that predicts a breast cancer patient’s likelihood of a favorable clinical outcome in response to adjuvant trastuzumab.

    A massive gene expression profiling analysis of baseline pretreatment tumor specimens obtained from 372 breast cancer patients identified 32 genes that correlated strongly with 5-year relapse-free survival, each with a P value less than .001, Dr. Edith A. Perez reported at the San Antonio Breast Cancer Symposium.

     

    The ideal thing would be to find a gene that, if highly expressed, predicts for benefit or not of Herceptin [trastuzumab]. We are on our way to developing a predictive test that can define the right treatment for individual patients, and that is very exciting," declared Dr. Perez, deputy director at large of the Mayo Clinic Comprehensive Cancer Center and director of the breast cancer translational genomics program at the Mayo Clinic in Jacksonville, Fla.

    In all, 27 of the genes were associated with good outcome, while the other 5 correlated with poor outcome. The major functional categories these genes are involved in have been identified: cell receptor signaling, chromatin structure and transcription, control of cell death, cell cycle, Wnt/beta-catenin signaling, and lipid signaling. It’s not yet known whether these 32 genes are expressed in the epithelial or the stromal component of the tumors, and it will be challenging to figure that out, she said........

    Discussant Dr. Dennis C. Sgroi called this work tremendously exciting. He noted that trastuzumab is a very expensive drug, and roughly 25% of treated patients relapse within 5 years. Trastuzumab also carries a risk of cardiotoxicity, and he was intrigued by Dr. Perez’ suggestion that the investigators believe they may have identified baseline tumor gene activity signatures predisposing to symptomatic cardiomyopathy and transient asymptomatic drops in left ventricular ejection fraction."..........

    www.oncologypractice.com/oncol...

  • ashla
    ashla Member Posts: 1,581
    edited December 2012

    And leftfootforward I do wish you the very best in dealing with this new challenge .I  hope that you are able to find some pleasure during the holidays  and that the new year will be filled with good outcomes to your treatments.

    I have a good friend who is a Professor of physiology and endocrinology . She is a world renowned researcher in endocrine and female reproductive issues and a  13  year breast cancer survivor. She says that if you have to get cancer...breast cancer is the one to get because there is so much progress . It's a brave new world in breast cancer thankfully.

  • Kay_G
    Kay_G Member Posts: 3,345
    edited December 2012

    Left foot, wishing the very best for you as well. My EF numbers are the same as yours. It has been six months since finishing herceptin for me, and I remain on the cardiac meds as well. I think it is good that they caught the mets early. That has to be beneficial. Keep posting and let us know you're doing. We're all rooting for you. Happy Holidays.

  • MemaSue56
    MemaSue56 Member Posts: 2,129
    edited December 2012

    Hope everyone has a Wonderful Holiday....Prayers always,

    Sue

  • ArleneA
    ArleneA Member Posts: 1,309
    edited December 2012

    Merry Christmas, Happy Holidays everyone.

  • ArleneA
    ArleneA Member Posts: 1,309
    edited January 2013

    A New Year has begun and hopefully a positive one for all of us!

    Happy New Year ladies!!!

  • bcbarbie10
    bcbarbie10 Member Posts: 319
    edited January 2013

    ArleneA, what dose were your 10 herceptin?



    Happy and healthy new year to all!

  • ArleneA
    ArleneA Member Posts: 1,309
    edited January 2013

    BCBarbie:  That's funny and I have no idea the dose.  Sad huh!  I started with a loading dose which lasted 90 minutes and it was reduced down the next 2 treatments and then 1/2 hour.  I'll have to check!

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