herceptin side effects

jeancmici
jeancmici Member Posts: 665 Member
edited March 2014 in Breast Cancer #1
To those of you on herceptin - did you have more severe side effects in the beginning? did anyone have to stop herceptin because of heart failure?
Think I will begin this treatment along with my zometa infusion on dec. 1 - monday.
Thanks for any info - and thanks for info on the ports.

A "friend" said to me yesterday: Wouldn't you have more quality of life if you just did nothing and waited for the end without treatments especially when there is no cure?
I thought that was a stupid statement - and tho' she has been a friend for years, feel she is useless around sick people. Agree? disagree?

Well, that's a lot in one posting from a worried Jean!

Love to you all.

Comments

  • rizzo15
    rizzo15 Member Posts: 153 Member
    #2
    jeancmici. Good luck on your herceptin. As you can read on this discussion board, many of us are in the same boat (HER/NEU2+ etc.) as you and will be intensely interested in your experiences with herceptin. As for your friend, her comments sound like she has way more problems with a breast cancer diagnosis than you do! Even if it should come time for end-of-life decisions, which we all hope will not be for decades and decades, I'm sure that you will have thought out your own personal decisions long before and needn't discuss them with anybody unless you truly wish to. Hey, if we can get everybody through 20 or 30 more years just using Herceptin, maybe there WILL be a cure by then! Or maybe Herceptin will just be the life-long treatment like many of the AIDS drugs are now. You just keep taking them "forever". Nobody would have guessed that even 5-10 years ago.

    For myself, I'm just a natural worrier. If you can believe it, the first thing I blurted out to my husband after my Stage IIIA dignosis was, "Well, we've just paid off the house and I made out my will 3 years ago. I'm not worried about anything." So, I guess you can see that I was more worried about a smooth financial transition for my husband rather than what lay ahead for me! We are all different. I'm am sure whatever happens, you will make the perfect decisions for YOU all along the way.
  • JKAlley
    JKAlley Member Posts: 84
    #3
    rizzo15 said:

    jeancmici. Good luck on your herceptin. As you can read on this discussion board, many of us are in the same boat (HER/NEU2+ etc.) as you and will be intensely interested in your experiences with herceptin. As for your friend, her comments sound like she has way more problems with a breast cancer diagnosis than you do! Even if it should come time for end-of-life decisions, which we all hope will not be for decades and decades, I'm sure that you will have thought out your own personal decisions long before and needn't discuss them with anybody unless you truly wish to. Hey, if we can get everybody through 20 or 30 more years just using Herceptin, maybe there WILL be a cure by then! Or maybe Herceptin will just be the life-long treatment like many of the AIDS drugs are now. You just keep taking them "forever". Nobody would have guessed that even 5-10 years ago.

    For myself, I'm just a natural worrier. If you can believe it, the first thing I blurted out to my husband after my Stage IIIA dignosis was, "Well, we've just paid off the house and I made out my will 3 years ago. I'm not worried about anything." So, I guess you can see that I was more worried about a smooth financial transition for my husband rather than what lay ahead for me! We are all different. I'm am sure whatever happens, you will make the perfect decisions for YOU all along the way.

    Jean, I've been on herceptin for 6 months now and am scheduled to be on for a year. I just found out on Monday that the muga scan I had on Friday showed significant heart function decrease and I'm now off for at least the next 4 weeks. At that time they will test me again and then we make a decision if I'm to go back on or not. Up to this point I've had no problems. The way I see it is at least I got 6 months worth in me, and I'm glad I did it, but now I'm wondering if I want to go back on even if they say it's ok. Will I go on for a few months, have the same problem and have to quit again, so is that worth it? I don't know. Just about the time you think you have a game plan worked out they throw a wrench in it! I'll just enjoy my time off and discuss my options when I go back and talk to the Dr. As for your "friend" and her comments, I wonder what she would do if it were her in this position. No one really knows until they have been in these shoes, and her comment was very uncalled for. People just don't get it sometimes! Good luck with the herceptin Jean, I do think it is worth trying, just make sure they test you (muga scans) on a regular basis. Judy
  • DeeNY711
    DeeNY711 Member Posts: 476 Member
    #4
    Jean, you are correct. Your friend's remark was indeed stupid. Clinical trials are showing fabulous results right now with vaccine given to women with metastatic breast cancer. The results have been so phenomenal, there is already talk of possibly expanding the use of the vaccine to include prevention of recurrence. There is also a new drug in trials that prevents cancer cells from multiplying by cutting off the process at a crucial point. Let's all plan to be around long enough to reap the benefits of both.
    Love,
    Denise
  • hummingbyrd
    hummingbyrd Member Posts: 950 Member
    #5
    Jean, I haven't had any side effects from the herceptin, and I've been on it 2+ years.
    Judy, were you having symptoms or was this a routine MUGA scan? I've never had one, so I may be having trouble and just to dumb to know it! They say ignorance is bliss.
    You were right Jean to put quotations around "friend" I mean with friends like that who needs enemies, or is it enemas? Definately would NOT put her in charge of my living will! LOL Sorry, you know my sense of humor. See, she's not useless, I've gotten two lame jokes off of her already.
    I wouldn't put much stock in her stuuu-pid statement, cause she obviously doesn't know much about cancer. It is now considered a 'chronic condition' and is treated as such, much like hypertension or diabetes. If this person has HTN I'd be tempted to say something like...'Do you think your quality of life would improve if you quit your BP meds and waited to have a stroke? There's no cure for HTN and think of all the money you'd save on medications.'
    Then again I do suffer foot and mouth disease. LOL
    Go read Isaiah 41:10, Phillipians 4:6-7 and Matthew 6:34 That's your homework for the holidays
    God bless. hummb
  • jeancmici
    jeancmici Member Posts: 665 Member
    #6
    hummingbyrd said:

    Jean, I haven't had any side effects from the herceptin, and I've been on it 2+ years.
    Judy, were you having symptoms or was this a routine MUGA scan? I've never had one, so I may be having trouble and just to dumb to know it! They say ignorance is bliss.
    You were right Jean to put quotations around "friend" I mean with friends like that who needs enemies, or is it enemas? Definately would NOT put her in charge of my living will! LOL Sorry, you know my sense of humor. See, she's not useless, I've gotten two lame jokes off of her already.
    I wouldn't put much stock in her stuuu-pid statement, cause she obviously doesn't know much about cancer. It is now considered a 'chronic condition' and is treated as such, much like hypertension or diabetes. If this person has HTN I'd be tempted to say something like...'Do you think your quality of life would improve if you quit your BP meds and waited to have a stroke? There's no cure for HTN and think of all the money you'd save on medications.'
    Then again I do suffer foot and mouth disease. LOL
    Go read Isaiah 41:10, Phillipians 4:6-7 and Matthew 6:34 That's your homework for the holidays
    God bless. hummb

    >>Definately would NOT put her in charge of my living will!<<

    You got that right!

    She used to be my best friend but the one who is best and longest actually is the one who insisted on going with me for that fateful mammogram and all the chemos - she's still going with me for all the important treatments. The 'friend' told the FRIEND that she's a saint - indeed she is!

    the 'friend' showers me with gifts. the FRIEND gives me her time - sometimes a full day when we are delayed and I told her that is priceless.

    Hope your holiday is a good one.
    Jean
    I'M NOT scheduled for any MUGA!?!?!
  • SusanAnne
    SusanAnne Member Posts: 245
    #7
    jeancmici said:

    >>Definately would NOT put her in charge of my living will!<<

    You got that right!

    She used to be my best friend but the one who is best and longest actually is the one who insisted on going with me for that fateful mammogram and all the chemos - she's still going with me for all the important treatments. The 'friend' told the FRIEND that she's a saint - indeed she is!

    the 'friend' showers me with gifts. the FRIEND gives me her time - sometimes a full day when we are delayed and I told her that is priceless.

    Hope your holiday is a good one.
    Jean
    I'M NOT scheduled for any MUGA!?!?!</p>

    Hi Jean,

    This is my first post on this site. Had to write though since I'm on Herceptin. I'm getting it through a clinical trial, because I'm stage IIIA. I started in August. I had a MUGA before any chemo began and I scored at 55% (normal, but low normal). After 4x of AC my MUGA score fell to 54%. After 3 months of weekly taxol and herceptin my MUGA score fell to 51%. If I fall below 50% on the next test in 3 months I must stop the treatments. Just spoke to my doctor yesterday to express my concern and she is referring me to a cardiologist. I would like to get into a cardiac rehab program to improve my heart function before if falls below the 50%. I don't want to have to stop the treatments. I have been exercising 30 min. at least 4x/wk throughout the Herceptin treatments to prevent this from happening. At this point though I don't want to increase the exercise unless it's supervised or doctor prescribed. I also have to ask the question, why can't we go on one of the heart medications (inderlol, I think) to increase the function of the heart? I'm not sure if that would be allowed on my clinical trial.

    Are you not having any heart tests (echocardiograms)? If you go on the herceptin, you will have to. After all is said and done, I think the herceptin is good, no other side effects. I just wish they would make it in pill form!

    Good luck,
    Susan
  • jeancmici
    jeancmici Member Posts: 665 Member
    #8
    SusanAnne said:

    Hi Jean,

    This is my first post on this site. Had to write though since I'm on Herceptin. I'm getting it through a clinical trial, because I'm stage IIIA. I started in August. I had a MUGA before any chemo began and I scored at 55% (normal, but low normal). After 4x of AC my MUGA score fell to 54%. After 3 months of weekly taxol and herceptin my MUGA score fell to 51%. If I fall below 50% on the next test in 3 months I must stop the treatments. Just spoke to my doctor yesterday to express my concern and she is referring me to a cardiologist. I would like to get into a cardiac rehab program to improve my heart function before if falls below the 50%. I don't want to have to stop the treatments. I have been exercising 30 min. at least 4x/wk throughout the Herceptin treatments to prevent this from happening. At this point though I don't want to increase the exercise unless it's supervised or doctor prescribed. I also have to ask the question, why can't we go on one of the heart medications (inderlol, I think) to increase the function of the heart? I'm not sure if that would be allowed on my clinical trial.

    Are you not having any heart tests (echocardiograms)? If you go on the herceptin, you will have to. After all is said and done, I think the herceptin is good, no other side effects. I just wish they would make it in pill form!

    Good luck,
    Susan

    I did have a MUGA in January 2001 before AC - think it was 69- but never any after chemo. As far as I know I'm getting the herceptin without a pre-test for the heart.

    I'm glad to have those numbers you've given me - thanks - you are not taking it for metastases so I would be inclined to stop it for the benefit of my heart. I have this as my major hope to stop progression which is going along at a fast clip.

    If I don't write here anymore, gals, you'll know I met trouble!

    Jean
  • SusanAnne
    SusanAnne Member Posts: 245
    #9
    jeancmici said:

    I did have a MUGA in January 2001 before AC - think it was 69- but never any after chemo. As far as I know I'm getting the herceptin without a pre-test for the heart.

    I'm glad to have those numbers you've given me - thanks - you are not taking it for metastases so I would be inclined to stop it for the benefit of my heart. I have this as my major hope to stop progression which is going along at a fast clip.

    If I don't write here anymore, gals, you'll know I met trouble!

    Jean

    Jean,

    I've read articles about women who have mets to the brain and elsewhere and are now cancer free after being on the herceptin. Have faith.

    If there are ways for me to keep my MUGA score up, I will do whatever it takes. Being in my position, my greatest fear is the day they tell me it has spread. I will do anything to keep that from happening. Taking the herceptin is like an insurance policy for me. Hope it works for you.

    Susan

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