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Herceptin - Quick Side Effects Poll

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  • Sassa
    Sassa Member Posts: 98
    edited February 2009

    They go away within a few months of stopping herceptin.  Of course, it takes longer to see better nails because you have to wait for the nails to grow out.

  • konakat
    konakat Member Posts: 499
    edited February 2009

    While only on herceptin, I had some joint aches, but nothing like I had with taxol.  But my flexibilty/strength was gone -- I was like a little old lady getting up off the couch. 

    The worst was my nails -- splitting like crazy -- I had to keep them cut very short. 

    No thinning hair.  Since it's been growing back since Nov 07 I didn't have a single hair in my hairbrush while only on Herceptin (and Herceptin and Tamox), I kid you not.  Now that I'm back on taxol I shed...

    Tx#1 (2007-08):  Herceptin once every 3 weeks with dose dense Taxol every 2 weeks. (This was after dose dense A/C)

    Tx#2 (2008):  Herceptin once every 3 weeks. Also on Tamox.

    Tx#3 (2008-09):  Mets to liver and bones. Tamox not working, ovaries out Dec 29/08.  Herceptin Weeks 1&3; Aredia Week 2; Taxol Weeks 1,2,&3.  Week 4 is a chemo holiday.

    Tx#4 (2009 - started today):  Herceptin Weeks 1&3; Aredia Week 2; Taxol Weeks 1,2,&3, Carboplatin Weeks 1,2&3.  Week 4 is a chemo holiday.

    Sept - Dec 2008 I was only on Tamox.  The aches from Herceptin were gone in about week!  Nails were still recovering when I went back on Herceptin.

  • bluewillow
    bluewillow Member Posts: 28
    edited February 2009

    Hi PdlC,

    I had my last Herceptin treatment on Nov. 10, 2009, and all the side effects I mentioned are now completely gone except for the dry skin and bad nails, and honestly, I think that's more of a menopause thing for me, plus the cold weather too.  So, hang in there, they are not permanent!

  • Maire67
    Maire67 Member Posts: 418
    edited July 2010
  • Roxy3
    Roxy3 Member Posts: 2
    edited February 2009

    Had a good experience with only mild acing joints only during the second infusion. Otherwise my Herceptin Journey was easy.

  • angie27
    angie27 Member Posts: 179
    edited February 2009

    Hi Ladies

    I am 6 month into herceptin, the only thing with me is the runny nose, the body ache, which I think is from Femara, and also some eye twitching, otherwise no other complains.

  • plakatakr
    plakatakr Member Posts: 45
    edited February 2009

    pdlc436- the SE's will go away!

  • nobleanna007
    nobleanna007 Member Posts: 58
    edited February 2009

    A/C x4 SE- boneaches from neulasta shot

    Abraxane+Herceptinx4 - severe leg pain from bottom of back down legs

    Herceptin weekly since 7 more to go- still have bone aches

    Tomixifen- everyday not sure yet.

    I believe its the herceptin keeping me in pain and it will be intresting when I am not taking it anymore. I sure do hope its the Herceptin or then I don't know whats wrong with me!!!!

  • anitach
    anitach Member Posts: 8
    edited February 2009

    First of all.... Bluewillow, that baby is GORGEOUS!! You should be so proud!

    I have been on Herceptin since May '07 and will stay on until it stops working. My side effects include constant runny nose and sinus problems, fatigue (but that could be from full time job and 3 kids!), lower back pain, and just random and misc. aches and pains that I am trying to get used to.

    Does anyone have to take pain medication for their Herceptin joint aches? I have gotten to a point where by the end of my work day I can't function for the rest of the evening without a 10 mg Lortab. I could function if I could just lay down and take a short nap, but I have to make dinner, run kids to ballgames, help homework and get everything ready for the next day. Anyone else out there like me or am I the wimpiest of them all???

    Anita

  • fightinhrd123
    fightinhrd123 Member Posts: 21
    edited February 2009

    Well i must be the wimpiest of them all, because I am taking vicodin for the pain ;)  I had REALLY bad pain during taxol and it never really went away, so i'm thinking if may have some nerve damage.  My pain is all down my legs and back and even my fingers, and seems to get worse with each herceptin.  I have a skelotor xray on Tuesday so if anyone wants to send pos thoughts and prayers my way i'll take them Laughing

    Laura

  • smokey
    smokey Member Posts: 2
    edited February 2009

    I was suppose to have 52 weeks, every week an infusion of Herceptin...throught the Port. After going through 3 months of adriamycin/docorubicin and cytoxan; then 12 weeks, every week, infusions of Taxol + Herceptin; and then suppose to do 52 more weeks of Herceptin, my Heart could not take it anymore.  My wonderful, chemo oncologist said, "Your Muga heart scan went from a 70 to a 40...(this is after 42 infusions of Herceptin) ..so I am stopping the infusions of Herceptin."

    Yes, I had blood trickle down my nose during the 12 taxol + herceptin.  Now, all I worry about is if the breast cancer will come back.  Side effects now are the darn pills everyday: terrible bone pain and weight gain.

  • smokey
    smokey Member Posts: 2
    edited February 2009

    I have terrible pain in my bones, too.  Terrible back pain.  Terrible swelling of my fingers which hurt me so much I had to go to the Jewelry Store and have the Jeweler cut off my wedding band and 25 year anniversary ring.  So sad.  I really don't know what to do.  I am taking the Femarra pills every day and continue to eat the same healthy foods and meals I did before & during chemo/radiation but my weight is gaining.    I really don't know what to do about food other than resort to only lettuce and carrots?

  • suz41
    suz41 Member Posts: 3
    edited February 2009

    I recently finished a year of herceptin, first twelve weeks were weekly injections with taxol, then every three weeks with herceptin only.  I had the constant runny nose, nail infections where I actually lost a few fingernails, and weight loss.  Since ending hereptin I have increased my exercise to 5 weekltytrips to the gym and starting eating healthier but have actually put on 10 pounds!!   Very frustrating......any ideas from anybody out there on how to break this cycle??Suze

  • Yogi70
    Yogi70 Member Posts: 214
    edited February 2009

    I have been doing Herceptin only since September every three weeks. I should be finished in April but I have to have an ECHO tomorrow because my last MUGA was 52%. So I have a feeling that my onc. is going to stop treatment until hopefully the damage is reversed. But I'll know about that later.

    My nails are okay but I have the runny nose and the aches and pains especially my left hip but it is not as bad as when I was doing the taxol. Hang in there ladies.

    Yogi

  • tbird57
    tbird57 Member Posts: 50
    edited February 2009

    Hello girls,

    Drippy nose with crusties around the edges....and my nails look bad but I thought it was residual chemo effects...nothing too bad.

  • tomatojuice
    tomatojuice Member Posts: 9
    edited February 2009

    My alkaline phosphotase levels have been high since being on it. Have 3 more to go.Finished in May.Nothing other than that. But it has me a bit worried.

  • 07rescue
    07rescue Member Posts: 4
    edited February 2009

    My alk phos levels are also elevated, only on Herceptin for a little over a month at this point.

    Also have constant mild nosebleed, nasal drip, sore finger and toe nails. Always achey, so that is not different for me.

    Thanks everyone, for responding, this thread is very, very helpful to me for figuring out how to separate the Herceptin s/e's from the TCH as a whole. 

  • barbra1
    barbra1 Member Posts: 3
    edited February 2009

    Thank you for that ray of sunshine. I had the best hair and nails before chemo and Herceptin which i just finished a year of. My hair grew back ok ;except grey, but thin on top and my nails aren't as strong but tolerable. The runny nose is a big constant but easy compared to other things that could be wrong. I get emotional 3 days after each treatment and depressed but i just had my last treatment and hope all will improve. Hey, i'm very grateful that i'm still alive.

    This is my first time with you gals.   barbra1

  • barbra1
    barbra1 Member Posts: 3
    edited February 2009

    smoking while you have cancer

  • barbra1
    barbra1 Member Posts: 3
    edited February 2009

    I'm interested in people who still smoke while having cancer

  • Joanna1
    Joanna1 Member Posts: 1
    edited February 2009

     I took Herceptin weekly for a year. The main side effect for me was a constant non productive type cough. It was a constant drip from the nose or down the throat it seemed for the first few weeks. I sucked on a lot of hard candy and kept tissues handy. It definitely impacted my quality of life. I was glad when that finally passed. Otherwise, I felt fine during Herceptin. It was an in/out thing.... 45 minutes from being hooked up- to being disconnected. When the weekly visits were finally over....I felt something was missing from my life! I worried that I was doing nothing to keep THE BEAST away. I guess that was natural. 

     I thought the bad toe nails were a product of having AC and Taxol. It took almost a year for my toe nails to return to normal. My hair came back thinner than before. My skin seems to be always dry. You really don't know if some of these things are the aging process or results of cancer treatment. I am now 65. I was diagnosed with cancer when I was 62. Valentine's Day marked my 3 yr survivor anniversary.

  • dblinch
    dblinch Member Posts: 4
    edited February 2009

      HI ladies

     WOW, i found the right site, i'm glade to hear i'm not alone with the side effects, foot pain, numness in toes, chills drippy noes, splits around the fingers rough nails, the doc said  hrecepton should be no problem. i'm finding out he's  WRONG. I have year to go, i guess we all our in it for the good it will do  us in the long run, GOOD LUCK TOO ALL

  • radie90
    radie90 Member Posts: 1
    edited February 2009

    I started herceptin with carboplatin and taxotere in May 08. I received it every three weeks though a port.  I had severe bone and muscle pain the entire time.  I took vicodiene with some relief.  When chemo stopped I had surgery and then started 6 weeks of radiation.  I had been getting herceptin every three weeks through the radiation.  I thought my pain would go away after radiation but it has increased.  My body aches so bad that I can't get up from a chair.  I have a hard time sleeping because every time I turn over it wakes me up.  I complained to my oncologist and she felt that by giving less herceptin every week might help.  This will be my third week and I am struggling to function.  I have Petscan, MRI and Bone scans next week to make sure I don't have any mets.  If the scans are clean I want to stop my herceptin so I can get my life back.  When I complain about the body pains my oncologist said  she has never had anyone over the last five years of using herceptin have this sort of reaction.  The other minor side effects are a runny drippy nose and eyes.

  • GramE
    GramE Member Posts: 2,234
    edited February 2009

    I had 12 weekly taxol and herceptin before lump and snb in December.  Before that, 4 DD A/C.   Hair is coming back but toe nails seem to have stopped growing.  Finger nails are slowly growing out, but still sensitive.  When I was off of herceptin, from end of Oct to middle of December, NO numbness, neuropathy in feet or left hand.  It was back the day after my first Herceptin only and continues.   

    Some of this may be weather and/or  age related, but aches and stiffness almost every day.  I am 63 and pretty much a recliner potato although I try to walk each day, but no real exercise program.   Once it is warm enough to walk and not dark at night, I will walk when the sun is low and do not need sun screen.   I walked every evening during taxol and herceptin and had little or no joint pains.   

    And my taste buds are back but I find things I used to like taste not so good.  Used to LOVE crab cakes, but took them off my list for now.  And coffee tastes more like hot water... 

  • anitach
    anitach Member Posts: 8
    edited February 2009

    Juleeanne,

    Doesn't it drive you mad when the onc looks at you like you're crazy for having side effects??? I swear I would never wish ca on anyone but if they only had to take the drugs for a few months just so they could see that not everyone is the same and some experience more of the se's than others. I started out with Herceptin, Abraxane and Cytoxin. Only experienced the aches for a few days after treatment then I was ok. All through '08 I did Herceptin only and continue on that. But for the last 4 months or so of it I have constant aches and pains. They are only nagging until about 3 or 4 pm by which time they become unbearable and a pain pill is necessary. I hate asking for painkiller refills..... I feel like druggy. But I don't know how else to maintain my normal life. I have 3 kids and husband depending on me to keep a normal happy family life.

    Anyway, sorry for the rant..... just know that you ARE NOT the only one who experiences pain and achiness from Herceptin alone. When I went to my regular Dr. with complaints of some specific pain he got out his big physician's desk reference book and looked up Herceptin. I pointed out to me right there that the first side effect is pain!! Too bad our onc's refuse to believe!

    Take care and I hope you find some relief soon...

    Anita

  • KathyL
    KathyL Member Posts: 109
    edited February 2009

    I received Herceptin 4 times with my chemo (T/C; 1/08-3/08), then 13 times alone; every three week infusions.  Once I was on herceptin alone, I noticed only a runny nose.  I finished herceptin Dec. '08.  My runny nose has improved greatly, but is not totally gone.  Definitely not a daily symptom anymore though.  After reading everyone else's posts here, I have noticed my nails are still crappy, so I'm not sure what that's from.  They are weak and peel a lot.

  • ski2
    ski2 Member Posts: 5
    edited February 2009

    Runny nose/post nasal drip - but I guess everyone gets this, congestion, sometimes sneezing,nose sores, chills for about a week after my infusion, weak nails that have to be trimmed very short or they can tear, hand swelling. I really have not found any solution for the side effects, but they are pretty much tolerable, my echo is fine, and I am happy herceptin exists. I hope it works! ( I am stage one, node neg). I get my herceptin every 3 weeks and will be done in a few months. 

  • lesliesue
    lesliesue Member Posts: 1
    edited February 2009

    Hi. How soon did your number go up on the Muga? Did you have to take a rest from the Herceptin, or did it just go up. I had a Muga after my first dose of Herceptin (the one given for a year every 3 weeks) and my number after the Muga went from a 70 to a 55. My doctor wants me to take Herceptin again and then get another Muga. I'm wondering if I need to take a rest from it, and wanted to know did your number naturally just go up?

     Thanks and best wishes,

    lesliesue

  • snowyday
    snowyday Member Posts: 121
    edited February 2009

    Started herceptin in October so I have a ways to go.  I've gained a huge stomach and believe I have never ever had a large belly except when I was pregnant.  Diet does not help!

    Nails cracking all the time, I clean my toenails with a mixture of rubbing alcohol, dove soap, and a touch of dish soap.

    Fatique all the time and breathless, dizzy, and heart pain when I vaccuum or try do anything quickly so I have to do everything slowly.

    Last treatment on Fri, Red were down and leuks were up, onc said nothing to worry about?!!!

    And I am truly and honestly in pain and crabby all the time.  And typing makes me sleepy.

    Neuropathy in my leg has grown from fist size to football size. 

    Bone pain

    Have anothe Muga in three weeks so we will see last muga only down 2% from 61 to 59

  • sherryw
    sherryw Member Posts: 9
    edited February 2009

    The only side affects I know were definitely from the Herceptin was diarrhea and a drippy runny nose.  As soon as the year of Herceptin treatments were done those side-effects disappeared.  So I am sure it was from the Herceptin.

    Sherry