Herceptin Heart Attack

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

    Getting herceptin # 12 tomorrow. Heart function seems to be holding where it was 45 to 50.

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

    That is excellent Kay.  Good luck!

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

    YaYa:  I've had 4 MUGAs and they are painless.  They use my port for the procedure (except the last time).  They inject a formula into the port (or vein) and let it sit for 30 minutes and then they inject the radioisotope and then remove the needle and you lay on a table and they scan the heart (at resting, I believe).  Whole process is about an hour and no pain at all.  Don't be nervous.

  • YaYa5
    YaYa5 Member Posts: 667
    edited February 2012
    thank you, arlene.  leaving soon to go.  i appreciate your feedback.
  • TonLee
    TonLee Member Posts: 2,626
    edited February 2012

    Yaya, I'm just seeing this!  Hope your MUGA went well.....

    Easy wasn't it?

  • YaYa5
    YaYa5 Member Posts: 667
    edited February 2012
    tonlee, yes!  it was a piece of cake.  and amazingly, the head of the department that does the MUGA's was there for mine and told me to just lean over his shoulder a little when i was finished and i could see my EF and not have to wait to hear from the MO.  it was 56%.  I am sooo relieved! 
  • Omaz
    Omaz Member Posts: 5,497
    edited February 2012
    Good deal yaya!
  • TonLee
    TonLee Member Posts: 2,626
    edited February 2012
  • MemaSue56
    MemaSue56 Member Posts: 2,129
    edited February 2012

    GREAT YaYa....I had my MUGA last Monday.  I'm at 59%, the one before I was at 57%...so I'm moving up.   Got my 24th Herceptin the next day.  Get this Ladies...my Onco says she wants to keep me on Herceptin for 3....yea...3...years!!  WTF...anyone else?  The MUGA's will continue for monitoring...but WOW...although I feel fine and had been NED last 2 scans.  I read the Herceptin link that TonLee posted...said like 36? doses...30something anyway....but 3 years?  Not sure what to think.   So how bout a SMILE  for the day....

    A kindergarten class had a homework assignment to find out something exciting and relate it to the class the next day.
    When the time came to present what they'd found, the first little boy the teacher called on walked up to the front of the class, and with a piece of chalk, made a small white dot on the blackboard and sat back down.
    Puzzled, the teacher asked him what it was.
    'It's a period,' he replied.
    'I can see that,' said the teacher, 'but what is so exciting about a period?
    'Darned if I know,' he said, 'but this morning my sister was missing one, my mom fainted, my dad had a heart attack, and the boy next door joined the Navy
    .'

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

    haha!  Good one.

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

    Stopping by to say hello.  Looks like no one has been around for awhile.

    Doc has me on the schedule for Herceptin tomorrow morning but we'll see what my echo says.

  • Omaz
    Omaz Member Posts: 5,497
    edited February 2012
  • Kay_G
    Kay_G Member Posts: 3,345
    edited February 2012

    Good luck Arlene! Let us know how it goes. I am scheduled for next Thursday.

  • kennylynne
    kennylynne Member Posts: 152
    edited February 2012

    Fingers crossed Arlene!!! I am next Thursday as well then another echo before my next one. Take care ladies

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

    Hi everyone:

    Well, my EF is at 50-55 and the ONC says NO more Herceptin for me.  She doesn't want to risk it going below 50 and the potential for more problems.  She did the CTC test and it is zero and now I'll see her every 3 months. She says you can only stay off of Herceptin for so long and my last one was in November.  I said well at least maybe my drippy nose and eyes will go away.  She says those are probably more from the residual effects of the Taxotere than the Herceptin.  Geez and my last chemo was early June. 

    Good luck Kay.  How many will that be for you.  I made it through 10.  She mentioned all the studies being done on 6 months versus 12.

    Arlene

  • Omaz
    Omaz Member Posts: 5,497
    edited February 2012
    Arlene - Well you finally have closure.  Did your onc say anything about the 6 vs 12 month studies?  Great that the CTC test was 0!  I don't think my onc does them.
  • ILBoysMom
    ILBoysMom Member Posts: 79
    edited February 2012

    Going to get my port removed tomorrow, yeah!  Went topless last week, things are moving on.  Just wanting to say hello to everyone.  I have 2 kids home sick today, and I am trying to keep my distance so I don't jeapordize my appointment tomorrow.

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

    Omaz:  She did mention that there are studies ongoing for the 6 months of Herceptin versus the 12 but that they studies aren't complete.  We knew that didn't we! 

    Question for someone way more in the known than me - if you are HER positive, does that mean that if you were to get another tumor, would it definitely be HER positive?  I know it is a stupid question.  Is it in your blood or tumor specific??

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

    Arlene it is tumor specific.  However most of the time from what I have seen if you are HER2 and it does recurr it comes back HER2. 

  • ILBoysMom
    ILBoysMom Member Posts: 79
    edited February 2012

    A new occurence or a new primary could come back with all new pathology.  Sometimes a tumor can even change from Her2- to Her2+.  This is why some medications no longer work after extensive treatment as the cancer evolves over time and adapts to its surroundings.  According to my Onc, it could come back as anything - but likely Her2+.

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

    Cancer sucks!!!

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

    It certainly does OMAZ.

    My new primary care doctor is adamant that I have the pneumonia shot.  She says especially with those of us who have had breast cancer it is very important.  Anyone else ever been told this?  I'm holding off until I do more research....who knows if these things can cause more problems.

  • Omaz
    Omaz Member Posts: 5,497
    edited February 2012
    Arlene - I just had an appt with my primary yesterday and he didn't say anything about it.
  • ArleneA
    ArleneA Member Posts: 1,309
    edited February 2012

    Hey Omaz:  I have a new primary care doc and she has done bc research....BUT I'll ask my oncologist, because I don't want anything I don't need.

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

    No one has recommended the pneumonia vaccine for me, and I had pnuemonitis last year on taxol.  I do think part of it is based on age though.  I'm not 50 yet and that may be the magic age.  Please let us know what your onc says.  I actually thought now being mid February it is kind of late to get that for this year.  Isn't it something you would normally get in the fall if you were to get it?  I'll ask my NP when I see her next week for Herceptin and let you know what she says as well.

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

    Omaz,

    My Onc doesn't do CTCs either...says they're too unreliable.  (I've seen proof of that assertion in my survivors group.  One of our ladies gets a CTC every year, and they were all good, fine, great.  For at least two of those years her BC mets to bones, liver, and lungs....all the while her CTC stayed steady.)  I don't get that.

  • serenitywisdom
    serenitywisdom Member Posts: 191
    edited February 2012

    Hi everyone,

     Been awhile since I have been on this site.  Well I missed 3 herceptin treatments cause of almost a 19% drop.  My EF went slowly down from 78 to 62 so they held it.  Onc sent me to cardiologist.  I got a second opinion from another cardiologist who is very familiar and studying herceptin impact  _Dr. Witteles at Stanford.  End result- I ended up on ace inhibitor and beta blocker.  After waiting for almost 3 months  they restarted me back on herceptin.  Today was my second herceptin infusion since restarting. They did a repeat MUGA right before the second one and   Good news,  my EF went back up to 68.  The cardiologist thinks it all noise and I might not have that much of a  heart problem.  Question that I do not think can be answered cause research has not been done:  Did my EF got back up cause they held the herceptin or because I started taking ace inhibitors and beta blockers which are cardio protective.  I asked my onc yesterday if I can finish taking herceptin  this March since I started TCHerceptin last March?   one chronological year of herceptin.  Or do I need to take  all the number of treatments that would normally be given in 52 weeks.  She said there are no studies yet to determine ( when herceptin is held for awhile) , what is optimum.  She handles each patient individually.  I wish they had already done the research to determine how much herceptin is really needed.  And who knows, we may be all different anyway in our need to take herceptin.    I do not think that more is  always better, especially in this situation.   

    The cardiologist plans to either give me a cardiac MRI or angiogram after I finish the herceptin to determine if have blocked arteries, heart damage heart disease, etc.  Meanwhile I plan to at least start the breast reconstruction.  That got delayed because of the heart issue and they cancelled the surgery.  Now they said it is ok to go ahead.  What a roller coaster ride this is.  I am not fond of roller coasters.  Have a good weekend everyone

  • Omaz
    Omaz Member Posts: 5,497
    edited February 2012
    I don't like rollercoasters either serenity!  I don't even like amusement parks -HA!  Much more the stroll on the beach and play in the waves person.
  • Kay_G
    Kay_G Member Posts: 3,345
    edited February 2012

    Welcome back serenity! And congrats on the good news with your EF! I talked to my cardiologist about the beta blockers and ace inhibitors. She casually mentioned I'd be on them for life. News to me! She said they could be protecting my heart so I should take them forever even after the herceptin is long gone from the picture. She said people feel better and get tired of taking prescriptions and want to come off them. She said every cardiologist can tell you of a patient they had who was doing fine and came off meds and their heart failed and they died. This seems like a different case to me since the herceptin is what is causing the problem and that won't be here any longer though. What is everyone else doing with the meds when they finish herceptin. I don't think I'll be taking them if my EF returns to its old level and I am finished herceptin no matter what she says. It would be different if I didn't have low blood pressure too I think. Hmmmmm.....

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

    Hi Serendipity:  Geez, we all get a lot of different tales.  Seems since I had Herceptin end of November, I could have gone back on it ... doc just doesn't want to chance my heart and doesn't seem to be a doc around who really knows much about Herceptin.  I do have another Echo coming up so we'll see what that one says but it isn't until the end of March. 

    Take care all.

    Arlene

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