Herceptin Heart Attack

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

    Serenity,

    I hope you are on a natural dessicated thyroid hormone as well as just T4?  Thyroid fatigue is killer.  Or was for me.   Just taking Synthroid wasn't enough for me.  I'd still have all the symptoms, even though my TSH was "normal."  So I started a lose dose of natural dessicated thyroid hormone and BAM!  Just like that.  All the SE went away.

    I think heart meds can def. make you gain weight.  They keep our hearts from pumping as hard as it normally would throughout the day.  Since the heart is a muscle it burns calories.  If it isn't working as hard, it isn't burning as many calories.....not to mention as the heart slows, the metabolism slows... in essence as a consequence of oxygen deprivation to the muscles.  If our hearts are compromised, the amount of oxygen getting to the muscles is reduced, therefore they burn less calories.  Make sense?

    Anyway, hope you are able to go and enjoy what your heart allows.

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  • serenitywisdom
    serenitywisdom Member Posts: 191
    edited June 2012

    Dear left foot forward, and everyone, 

    Thanks for the words of encouragement.  I do wonder about all the complicating factors causing fatigue and weight gain. I wonder about the interaction of herceptin with other drugs like arrimidex and my thyroid replacement drug.   I am getting hot flashes about one time /day.  I hope that will be it. 

     Tomorrow I see my plastic surgeon since the silicon implant feels uncomfortable/rubbing.  I guess I was hoping I would not notice it now that it has been 2 months post  surgery. I also see the divorce attorney since husband left last year while I had just finished chemo and was taking herceptin.  The good news is that I am alive, happy to have port out, the girls match more or less, am happy to have the opportunity to  hike and the cardio meds hopefully are working.

    I see my internist next week to get evaluated  out before this 7 day hike.  One day at a time.  Hang in there!

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  • Denise-G
    Denise-G Member Posts: 1,777
    edited June 2012

    Got the word yesterday from MO that Herceptin is still on hold and have to go see Cardiologist

    as Echo and EF didn't get any better.  Darn!

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

    Serenity,

    Glad you are going on the trip.  Take pics!  (And share them....lol)

    Denise,

    I'm sorry.  That is such a bummer isn't it?  Every time I see "no improvement" on my EF paperwork I'm disappointed.  Don't lose hope.  You may get it all back.  Remember *most* women do. :)

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  • Denise-G
    Denise-G Member Posts: 1,777
    edited June 2012

    TonLee - thanks so much for the encouragement! 

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

    Once again, a bit quiet on this blog.  I had a FINAL MUGA today....I say final because my cardio prefers the echos but the onco(s) like the MUGA so I gave in and had the MUGA.  Should get my results next week when I have my 3-month check up and blood work.

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

    Arlene,

    Quiet from me because now all I have left is the waiting game. 

    Hope your MUGA comes back with improvement!

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

    I was waiting until I saw the cardiologist today to let you know how I made out. I had my 18th herceptin on June 17. I am finished! WooHoo! Got deported a week and a half ago. Had an echo on Friday and saw the cardiologist today. My EF is still at 45, so no change in the number. That was a big relief because the proBNP test kept going up and was out of the normal range for the last few doses of herceptin. She said she thought even though the number was the same, she saw some signs of improvement in the echo. The plan is to stay on the beta blocker and the ace inhibitor and see her again in six months. I'm not getting an echo until 9 to 12 months though. She says she is hopeful that I get back to where I was. She said there aren't good statistics to know hw many women don't, but it is somewhere between 10% at the lowest to 25% at the highest % of women whose EF doesn't improve at all after stopping herceptin.



    I guess I won't have any more updates for at least nine months, but I'll keep reading with interest to see how everyone else is making out. I hope some time soon they will have some good information on how many doses of herceptin are really optimal. I would imagine there have to be diminishing returns with each successive dose. It would really be nice to be able to quantify it.

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  • Omaz
    Omaz Member Posts: 5,497
    edited July 2012
    Whoo Hooo Kay!!
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  • ArleneA
    ArleneA Member Posts: 1,309
    edited July 2012

    Great news Kay.  SO happy for you that you made it through all 18.  And deported too.  More congrats.  How was the deporting?  I'm worried because I have heard some horror tales.  I'm scheduling mine next week.

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

    Thanks Arlene and Omaz! Deporting was okay. They only gave me lidocaine, no sedation at all, which I was happy about. The doctor told some pop out and some are more encased in scar tissue and harder to come out. That was mine. It didn't hurt at all, but I was really creeped out by the pulling and tugging and cutting that I heard and could feel. But I always was very squeamish about even blood tests. If you're good about most medical things, I think it will be a piece of cake.

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

    Kay - BIG CONGRATS!!!  And thanks for sharing about deporting.  It will b years for me tho and am into my 14 mo of herceptin, still plugging along and am happy about that.

    LUBZ N HUGZ to ALL!

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  • serenitywisdom
    serenitywisdom Member Posts: 191
    edited July 2012

    Congrats Kaye.  I haven't been posting lately as I am just waiting until next Muga .  Been off Herceptin now since April after only missing about 2 of the total treatments and am happy I have no more port.  They took that out with the breast reconstruction surgery in April.  

    Today I was suppose to be up in high country doing a 70 mile  7  day hike but yesterday decided with my endocrinoloigst that I was not up to go, both physically  or emotionally.  I have been training a little for it since May but did not do eough training to feel like I could handle  8-10 miles/day and the altitude of 8-10000 ft.   The good news is that I do feel more fit, lost some about 7 pounds in past 2 months.  So I am giong to keep hiking and hopefully do it next year.  Difficult time however cause I probably have to move out of my house of 15 years this coming week  and am getting a divorce after 38 years of marriage. Good feeling  that the cancer feels like it is behind me, I hope my heart is getting better and now if I can just get thru the divorce things should get better.  The arrimidex is doing a number on me I think and I can't tell if hotflashes/  sweating is due to heart issues, thyroid issues or arrrimidex  issues.    Endocrinoloigst thinks fatigue and sweating and hot flashes is probably due to  arrimidex and not heart.  One day at a time.  So take care everyone and I hope soon they will figure out how much herceptin is really beneficial.  

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

    hugs to you serenitywisdsom.

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

    Serenity,

    I was thinking about you and your hike the other day.

    That hike will be there when you are ready.  Sounds like you have more than enough testing coming your way.  I'm so sorry about your divorce, about leaving your home.  My heart breaks for you.  If you need anything, anything a woman you've never really met can provide, heh.  Please don't hesitate to PM me.

    I am praying for you my sister.

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

    BIG HUGS Serenity. 

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  • serenitywisdom
    serenitywisdom Member Posts: 191
    edited July 2012

    Thanks to all of you and big hugs to all of  you too.  You all brought tears to my eyes.  It is wonderful to know we are not alone and can support each other.  Honestly, sometimes I think the divorce is harder than the cancer but feeling the caring and support from all of you  gives me strength.  Herceptin may have impacted  our hearts in a physical way but all the caring demonstrated by all of you writing in,  show  that you all have very big and very functional   and kind hearts.  

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

    Arlene,

    Will you please share the good news with this thread?  It gives HOPE.

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

    Almost didn't check in here today!  I had a MUGA last week and met with my onco today for my routine checkup and my EF is up to 65 from 50 just a few months ago.  I started at 73.6 so I'm so excited that it is returning to normal.  My onco called 65 above normal.  Granted the chemo/herceptin/radiation has done a toll on my body and I'm still not feeling 100% but they have me on several blood pressure medications and one that is supposed to help the EF and guessing it did.  I really don't think I'll ever see 73 again but I'm SO, SO HAPPY.  My last Herceptin was November so it has taken a LONG time for it to go back up.

    Keep the faith ladies....  Arlene

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  • TonLee
    TonLee Member Posts: 2,626
    edited July 2012
    Thank you Arlene!!  I am so happy for you Laughing
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  • Omaz
    Omaz Member Posts: 5,497
    edited July 2012
    Great to hear that Arlene!!!
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  • serenitywisdom
    serenitywisdom Member Posts: 191
    edited July 2012

    Great news Arlene!  Recovery takes time and it gives us all hope!  I am very happy for you 

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

     Thanks Ladies!  I hope everyone has the same results.  I think it takes longer for some than others!

     Arlene

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

    Hope is a beautiful thing Arlene! 

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

    Great news Arlene! Thanks for posting. I haven't been on much lately. Just saw your post too Serenity. You are a strong woman. I am sorry you have gone through so much. (((hugs)))

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

    Lets see if this blog is ok since the Triple ++ is pretty messed up.

    Anyone heard of Positron Emission Mammography (PEM) study/scan/test?

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

    I haven't heard of it Arlene.  But I admit, most of my research has waned now that tx is over.

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

    Thanks TonLee, it is a type of PET scan just for the breast and from what I can find out, it is not usually done after diagnosis and treatment....but this bs likes to do it yearly because it sees the breast and all the tissue much better than ultrasound and mammogram.  Pretty similar to an MRI with contrast.  I need to talk to my onco before I have more crap put in my system.

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

    Thanks TonLee, it is a type of PET scan just for the breast and from what I can find out, it is not usually done after diagnosis and treatment....but this bs likes to do it yearly because it sees the breast and all the tissue much better than ultrasound and mammogram.  Pretty similar to an MRI with contrast.  I need to talk to my onco before I have more crap put in my system.

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

    Sounds promising....even if you don't get it every year, maybe every 3?  I'd be interested in what your Onc thinks.....

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