Herceptin side effects

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  • linda8oh
    linda8oh Member Posts: 9
    edited August 2007

    i had my first herceptin one week ago. am doing it every 3 weeks. i did have a nose bleed today. have had a drippy nose for a long time. thought that was what it was. but was blood. i just thought..oh good one more thing. am doing a diary. will take it with me for my infusions so i remember to tell the nurse what is going on. linda

  • Darlin50
    Darlin50 Member Posts: 9
    edited August 2007

    I've been on Herceptin every 3 weeks since January. Until now I haven't had any side effects to speak of. I've been extremely tired that night and the next day since the first treatment. Last time however I experienced severe cramping in both of my feet, it happened on my way home from the infusion and again the next day. Has anyone else experienced this? I had another infusion two days ago and so far no cramping!

  • madarin
    madarin Member Posts: 21
    edited August 2007

    Hi, Terry... I've had one herceptin infusion (8/22) so far, but my chemo was done the next day, so I'm not sure what side effects were due to the herceptin or the chemo. I get herceptin weekly for a year, so the next one is today. Will post later or tomorrow to share what this does to me on its own. Blessings to you...

  • Annaanne
    Annaanne Member Posts: 190
    edited August 2007
    Hi all. I finished herceptin a year ago and can confirm that leg cramping and drippy, funky nose are side effects that lots of other women experienced.
    A
  • Mom2EMD
    Mom2EMD Member Posts: 4
    edited September 2007

    I get Herceptin every 3 weeks also. Will be done in November. Mugs have been good. I have noticed my nails don't grow very fast and flake sometimes. Haven't had any bad side effects, tho.

    Linda

  • mrs_X_Sunneedazee
    mrs_X_Sunneedazee Member Posts: 541
    edited September 2007

    I am on weekly Taxol and Herceptinfor 3 weeks, with a double dose of herceptin on the 3rd week, and then a week off. I constantly have a runny nose, and I get achy and flu like for 2 days after chemo. I also get the diarreah (sp?) and abdominal cramps really bad with the double dose. I am so glad to see that other have the same symptoms and it is not all in my head!

  • miss-di
    miss-di Member Posts: 161
    edited September 2007

    First dose of Herceptin had fever/chills/bone pain for about 8 hours in the middle of the night. Smaller flu like symptoms day 2 and almost normal day three.  They say the first one is the worst.

    I also had a loading dose of Faslodex same day.  Cont. with nose running.  My tx's our on Wed.'s so that helps with weekend stuff.

    All in all, I would do this in a snap compared to the chemo first time around!

    May an angel walk by your side.

  • Darlin50
    Darlin50 Member Posts: 9
    edited September 2007

    Ok all, I need some adviceSurprised.  Have been on Herceptin since January4th.  My first Muga was fine a 66, the second Muga came back four points lower a 62, my last one is another 4 points lower a 58.  Is this bad?  I still have 5 more treatments to go an I'm SCARED.  They are doing another Muga in  1 Month (instead of the usual 3 months), my Onc. says don't worry - but never really told me what the score means.  At what number are you in trouble?  I'm trying not to panic....but the mind sometimes takes you where you don't want to go.  Can anyone help me out here?

    Will keep fighting as long as I'm breathing!

  • Darlin50
    Darlin50 Member Posts: 9
    edited September 2007

    Ok all, I need some adviceSurprised.  Have been on Herceptin since January4th.  My first Muga was fine a 66, the second Muga came back four points lower a 62, my last one is another 4 points lower a 58.  Is this bad?  I still have 5 more treatments to go an I'm SCARED.  They are doing another Muga in  1 Month (instead of the usual 3 months), my Onc. says don't worry - but never really told me what the score means.  At what number are you in trouble?  I'm trying not to panic....but the mind sometimes takes you where you don't want to go.  Can anyone help me out here?

    Will keep fighting as long as I'm breathing!

  • Darlin50
    Darlin50 Member Posts: 9
    edited September 2007

    Sorry about the double post!

  • Bimmer
    Bimmer Member Posts: 248
    edited September 2007

    Diane started on HERCEPTIN three days ago and has no symptoms at all.

  • nagem
    nagem Member Posts: 353
    edited September 2007

    I think the standard cutoff is 50%. I too had a declining LVEF, though it remained high enough, barely, to finish treatment. A few things to remember: 1. Drink a lot of water. That seems to help your "score." 2. There is a degree of interpretation error, so some of the fall-off can be due to that, as well as to individual dayy-to-day fluctuation. 3. There is some research suggesting that a very short regimen of Herceptin, as few as nine infusions, is as effective is the current year-long regimen. So if you have to stop, you might well have had plenty to be effective. 4. Your heart function typically bounces back without a problem. Good luck!

  • Darlin50
    Darlin50 Member Posts: 9
    edited September 2007

    Thank you, thank you!  I feel I can breathe a little easier now!  I'm not happy my LVEF is on the decline - but I've had 12 treaments already and will have had 13 by the time I have my next Muga!  I will drink lots of water (not an easy task for me).  I am thrilled to hear that my heart function should bounce back once treatment is finished(my last treatment is scheduled for 12/28)!

    I can't tell you how much I appreciate your input - I have found that the experiences of others are invaluable!  Thanks so much for sharing!

  • Valsul
    Valsul Member Posts: 160
    edited September 2007

    I have had 12 treatments so far and only the last twice have I had the flu-like symptoms.  They are fairly mild and once I realise what it is I just go to bed and rest.

    Not a bad deal considering what it's doing for me.  I read that originally patients were given two years of Herceptin and research showed that a year's tx was just as effective.  Perhaps research continues and shows that 9 months is as effective as a year.  Hurray for continuous improvement!

    But as everyone agrees, after chemo Herceptin is a walk in the park.

    Valerie S

  • ReldaL17
    ReldaL17 Member Posts: 28
    edited September 2007

    I have my last Herceptin infusion this Tuesday, been getting them every 3 weeks since last October. Besides a little diarrhea the day after I have had no side effects at all.

  • triggs
    triggs Member Posts: 3
    edited September 2007

    Hi everyone, I am getting ready to start chemo and Herceptin every 3 weeks too.  Reading what everyone has said really is helping me to know what I am getting ready to go through.  I just had a mastectomy on 8/30/07 and it was in my lymph nodes and so my onc said they have to be very aggressive because the cancer I have is very aggressive.  I felt like I was alone in this, but reading what everyone has said I don't feel so alone now. Thank you!!!

  • bevnurse
    bevnurse Member Posts: 274
    edited September 2007

    Hi triggs,

     You found a great place here at bc.org! These women are great and everyone is here to help each other. There are no dumb or silly questions so feel free to ask anything. You will be amazed at the number of women who have done, felt, or thought the exact same thing you have!!!

     If you haven't checked it out yet take a look at the chemo discussion board. There will be a group of folks going through chemo as the same time you are and you can share your experience with what works and what to look forward to. That forum helped me save my sanity and I learned things I wouldn't have otherwise...it made chemo a little easier.

     Big hugs to you and I look forward to seeing your posts on the boards,

    Bev 

  • triggs
    triggs Member Posts: 3
    edited September 2007

    Thank you, I am glad to meet you.  I will check out the chemo side and will keep in touch with you and everyone.  Thanks again for everyones help it also saved my sanity.

    Triggs

  • JaxsonHarley
    JaxsonHarley Member Posts: 95
    edited October 2007

    Hi everyone,



    I was diagnosed this past March with ILC. Had 4 rounds of T/C, started Herceptin in May, will continue until next May. I started out not having any symptoms, but the last 2 treatments, about 2 days after, i get achey and the chills. It goes away after a couple of days.I also have the drippy nose. I am going to try the anithistime. This board is a Godsend for us to be able to come and identify with others about what we are experiencing. Thanks for listening, Jaxson

  • Berea
    Berea Member Posts: 5
    edited November 2007

    I just had my first Herceptin alone infusion 2 weeks ago; last (and final) chemo cocktail was 5 weeks ago and I can actually see a few hairs trying to grow!  The drippy bloody nose is not necessarily the Herceptin, but the Taxatere/Cytoxin/Herceptin loss of nose hair!  So thats what the nose hair is for!  I contracted a flu virus a few days ago and for the first time in 8 weeks my nose is stuffed up not drippy with blood....my taste buds still aren't back totally, does anyone out there have this with the Herceptin alone?  I felt tired and spacey the first Herceptin alone infusion......I was so looking forward to a turkey dinner I could actually taste......but perhaps its the cumulative effects of the four chemos.  I hope to taste real food next week...if I have to wait until I am done with Herceptin (7/08) then I am going to be one skinny hungry lady!

  • jjn
    jjn Member Posts: 1
    edited November 2007

    I have been on Herceptin for 11 months now.  My treatments are easy...I refuse the dex, take iv benadryl and two tylenols before treatment. I'm tired for several hours and I attribute this to the benadryl.  A piece of cake after a/c and taxol!  I do have the drippy nose, stiff joints and horrible nails.  I keep looking for help for the nails to no avail.  One of the onc nurses told me to take a vitamin, actually biotin, called Appearex, have been taking for about 3 1/2 wks with no improvement so far.  My other complaint is belly fat since treatment and that is why I began refusing the dex.  All, I suppose, a small price to pay for the opportunity to live.  Good luck to all.

  • debic
    debic Member Posts: 216
    edited November 2007

    I talked to the chemo nurse about the flu like sysptoms and she told me the night of chemo talk two tylenol and 2 benadryl.  I tried it this time and it worked great. I had been having a harder time with the herceptin alone then with DD A/C.

    Debi

  • ginnieredd
    ginnieredd Member Posts: 5
    edited November 2007

    Last treatment of herceptin was 07/06.  I took it for a year and the only side effect was the drippy nose.

    I still have pain and cramps in my wrists and feet, especially at night. I have chills and slept with an electric blanket all summer.  Hot, cold, hot, cold - the story of my life.  I attribute my aches and pains to the Taxol.  It really did a number on me as well. 

    I tried the arimidex and after 30 days I thought that I was on taxol again. My onc. moved me to tamoxifen.  I am tolerating it ok. 

    My sister has the same aches and pains in her feet and hands as me. She never took herceptin so we both blame the taxol.

    Good luck ladies!  The battle is behind us - let's get on with life!

  • talbrig13
    talbrig13 Member Posts: 488
    edited December 2007

    I have been on Herceptin since Feb 8, 2007.  Just the last 2 tx I have had fevers of 103 and chills and body aches.  Getting tx on Thursday pm so I am not able to work on Friday - sleep  all day.

    Why is this starting now, I take a benedryl and  2 tylenols before each treatment. 

    I have 3 more and I am dreading them.

  • tracey2424
    tracey2424 Member Posts: 77
    edited December 2007

    hi

    i have been on Herceptin since Feb 07 i dont have any problems with the nose issue i do have sore hands and feet which i was beginning to think was an after effect from chemo and my nails have shot it peel and break.

    i also get some upper back pain usually about three days after the infusion not everytime but occasionally and sometimes get insomnia.

    but again give me Herceptin anyday over chemo.

    Tracey. 

  • wendyk13
    wendyk13 Member Posts: 1,600
    edited December 2007

    Hi....I think I've posted here before...all I ever got from Herceptin was a somewhat drippy nose, but I sure did get the crummy nails.  You can actually peel them!

    Tracey...OK...I admit it...I watch QVC!  I bought some stuff that you put on your nails everyday so I thought for $30. I would try it.  I think it might be making a difference as I have little nail ends now after 10 days.  It's made by ProStrong...if you want I will PM you the exact kit I got as there are tons of them on the site.  I did try Sally Hansen nail hardener but when I smacked them, the coating peeled right off, taking my top nail layer with it so I just use a good quality polish (OPI) and put the ProStrong right over it.

    Sorry some of you are having a hard time with the Herceptin and side effects but I think it's worth it to stick it out if you can.  If you are on the 3-week schedule maybe going back to once a week/lower dosing might make a difference.

  • Kasey
    Kasey Member Posts: 695
    edited December 2007

    After three months of Tykerb, I started back on Herceptin.  I had to start again with the loading dose.  Wow, I must've forgotten how bad the chills were, I was shaking so bad that evening.  The next day I was just fine though.  I'm sure glad I don't get that dosage every time!

    Hugs,

    Kasey

  • tracey2424
    tracey2424 Member Posts: 77
    edited December 2007

    i forgot to add on my last post the headaches, they are not after every infusion, but some of the time and i seem to get thenm about three days after and last for about five days on and off then just go.

    does anyone else experience this,

    wendy thanks for the tip on the pro strong for the nails and yes if you could send me what you ordered, and i also love QVC and ordered quite a few times infact im just watching the Molton Brown as i write.

    love Tracey 

  • TPPJ
    TPPJ Member Posts: 1,017
    edited December 2007

    Hello ladies...  I had 3 more infusions to go (did 4 a/c's, 12 taxols and would have had something like 64 herceptins had I completed them.)  I never felt bad from it, breezed through.  Or so I thought.  I just went in for a hysterectomy last week for excessive bleeding while on tamox, to reduce me estrogen and take care of some ovarian cysts.  They made the first cut and my ejection fraction  plummeted to 5%.  It had been 50% a month ago.  Anyway, never got my hyst. (least of my problems) and I have been dx'd with cardiomyopathy/congestive heart failure.  I had no blockages so it has to be a result of either a/c, all the herceptin or a viral infection.  And as w/so many things, I prob. won't know for sure.  The thing that freaks me out is I felt so good, totally normal.  Totally well enough to undergo surgery and then I do, and boom...  my heart could absolutely not take the gen'l anesthesia.  I feel so lucky to be alive.  Not to scare anyone, but just be careful about ANY gen'l anesthesia after using herceptin, beacuse I was totally clueless that anything was wrong with me in that dept.  I'm almost 42.

    I guess I feel at least glad that I got 99% of my infusions as I need them due to HER2/neu high rate of recurrences, but now I've got this black cloud following me (heart issues).  Amazingly, I'm more excited about the holidays than I have been in years.  Strange!  :)

  • boobear
    boobear Member Posts: 1
    edited December 2007

    Hi everyone, I am one of the "few" who has side effects with Herceptin. I am on weekly infusions and thankfully, only have 15 more to go.  My problems started about week 22.  I got severe chills, nausea, vomiting & diarrhea, it was the worst thing I have been through with any of my cancer treatment.  I lost 8 pounds in 3 days.  My oncologist stopped the Herceptin for 3 weeks.  Along with that, I started experiencing a severe rash, over all  my body except my face and feet, and severe hives.  After the 3 week break, I have not had the terrible chills,and severe flu symptoms.  But, weekly I get the rash and or hives.  My oncologist has me on an infusion of 10 mg of Decadron before the Herceptin infusion, and 4 mg of Decadron by mouth as needed, to control the hives and rash.  Decadron has its own side effects, but those are better than the hives and the terrible itchy rash.  I hope no one else has to go through this, but if anyone does, you are not alone!  I breezed right through the Taxol and only had minor joint pain, which my oncologist also said was rare.  I guess I am just strange!!  My MUGA scans have always been great, so I am blessed in that area!

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