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Herceptin - Quick Side Effects Poll

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  • SusieZeeMears
    SusieZeeMears Member Posts: 5
    edited June 2009
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    Hi Fayhen!!  I had major reaction's to the Herceptin & only had 6 treatment's, the last 2 were done after I was thru with my Chemo.  I had asthma already before I started all this,but the Herceptin made it worst.  I ended up with pneumonia in Dec 07 & was hospitalized & due to the damage it did to my lungs, I'm now on a Nebulizer twice a day for the rest of my life. So It did affect my lungs along with my joint's as I had mentioned.  Hope this helps in some way so you know your not alone.  Take care  Chow  Susie

  • Cal-Gal
    Cal-Gal Member Posts: 3
    edited June 2009
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    Started Heceptin yesterday.

    Just finished 6 rounds of TAC 2 weeks ago. Treatment plan calls for Hercetpin once a week for one year--52 treatments.

    First 24 hours:

    *Fatigued-weak-wiped out-slept 7:30pm to 5:30am, unusual for me, so tired, couldn't make myself anything to eat. 

    *Got winded--probably did too much--lifted heavy items.

    *A bit of nausea---it went away, did not have to take anything for it,nothing like chemo nausea.

    *Weird taste in my mouth--mediciny

    *The morning after (this morning) smelly urine--yes, I drank a lot of water 1 liter prior to infusion--2 liters after and one this morning, total of 4 liters in 24 hour time period.

  • Linda_from_NewJersey
    Linda_from_NewJersey Member Posts: 1
    edited June 2009
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     52 weekly treatments,  4 with Taxol.

     Worst symptom - DEBILITATING, PARALYZING, UNRELENTING ANXIETY that could not be managed with any drugs tried. Tranquilizers & antidepressants had no effect.

     Not so serious side effects - runny nose, bad nails

     Best side effect - about 50 lbs of weight loss. I could eat as much as I wanted - ice cream, pizza, etc. and still keep losing weight.

    Ejection fraction went down. But that was okay for me.  It started too high and was brought down into the normal range. 

  • Lhall
    Lhall Member Posts: 5
    edited June 2009
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    Hi everyone

     I am having herceptin every two weeks and My head and ears feel like I'm under water all the time. Has any one have this while on herceptin? Any help would be helpful.

     thanks Lynn

  • Unknown
    edited June 2009
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    Lynn, I think it's pretty common to have drippy nose and sinus issues with Herceptin.  You should check with your oncologist - sounds like you're congested.  Have you tried a Neti pot?  I use one every morning and it helps so much with congestion. 

    Laura

  • jkcrml
    jkcrml Member Posts: 53
    edited June 2009
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    I am having a reaction to something and today the nurses think it is the Herceptin. I have just finished TCH #5 and have one more to go. After the 3rd one, one of the side effects was hives so started on Claritin and Benadryl, after the 4th tx I had trouble breathing; if I walked 3 steps I had to sit down to catch my breath. The 5th TX the same thing happened. Anyone else having these problems??? They are thinking of stopping the Herceptin has anyone stopped and then started again?

    Fayhen are you having trouble breathing?

    Thanks

    Karen

  • Lhall
    Lhall Member Posts: 5
    edited June 2009
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    Laura My onc. don't seem to think Herceptin has any side effect. Every time I say something like a rash I have on my back he just say it's not the Herceptin. The only thing he has done was let me try doing it every two weeks. I was doing it every three weeks with a high dose. and my last treatment the next day my tip of my nose was numb and I called and told the nurse she was going to talk to the doc and I haven't heard back from them in a week. I just don't know what to do about it. I would change doc's but where I live there's only two onc's. in the area and I really didn't like the other one I just didn't feel comfortable in the office. And the nurses where I go are so friendly. I just feel like I'm being a whimp.

     thanks Lynn

  • smarie
    smarie Member Posts: 3
    edited June 2009
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    Hey Lhall,

    I had a rash and acne on my face from herceptin and the onc did agree it was from the herceptin.  I used a topical antibiotic which did help.  I also have the numbness on my face.  The package insert for herceptin has side effects of rash and numbness.

     Hang in there.  Good luck.

  • GramE
    GramE Member Posts: 2,234
    edited June 2009
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    lynn, I have a large bag of saline going with my herceptin (next to last one is tomorrow !!!! ) and they slowed the drip to an hour.   This dilutes it going in and give you extra hydration.   Maybe give it a try - nothing to lose, except the extra time it takes for the drip.   

    I met a Genentech rep at the Avon Walk and she says there are numerous reports of rash ( i got HIVES head to toe and had to go to ER for benedryl shot and drip)   and neuropathy (numbness).  Mine is ring and little fingers and sometimes toes.   

    IF you have no nose hairs, the drippy nose is sooo annoying.  I was going to invent a nose diaper.   And if trouble breathing, have you had a MUGA to check heart function?  I had one before, and every 3 months.    

    AS an aside, the facial numbness can be a form of jaw necrosis, but do not over react and think you have it.   You can google it and maybe ask dr.    And after tomorrow, I only have ONE more to go !!!    Since this is the wonder drug for Her2, I am hanging in there and I wish you all good luck and HUGS,   Nancy

  • MRSROCKYTOP55
    MRSROCKYTOP55 Member Posts: 61
    edited June 2009
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    I have a question.  Do you still have to have blood tests before each treatment when you are just having the Herceptin alone?  Thanks, kathy

  • GramE
    GramE Member Posts: 2,234
    edited June 2009
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    I had blood tests every 3rd tx with Herceptin only, which meant every 9 weeks (tx every 3 weeks).  And a MUGA scan every 3 months.   

    Today I saw the onco for my next to last tx and she wants to see me in 2 months, and blood work then.   Then a mammo in November and a final MUGA in December.  But your doctor will decide what he/she needs for you.   I had no problems with blood counts throughout chemo and herceptin.    

  • HensonChi
    HensonChi Member Posts: 68
    edited June 2009
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    Hi,

    I had blood tests during the herceptin everytime I saw the doctor...and a few times when I didn't see the doctor. 

  • MRSROCKYTOP55
    MRSROCKYTOP55 Member Posts: 61
    edited June 2009
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    Thanks for the info.  I am looking forward to not having blood tests every week.  God Bless

  • cbm
    cbm Member Posts: 8
    edited June 2009
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    I don't think I have any side effects.  I had A/C beg. 8/08, then 12 weeks Taxol with Herceptin, and declined all but a teeny amt of steroid with the Taxol by the last few weeks.  I hated the steroids and benadryl more than the chemo.  Since 1/09,  Herceptin every three weeks; declining all premeds.  No side effects that I can tell; normal blood counts--which I did not have thru the chemo (I had neulastin (or maybe neupogen, I don't remember which) almost every week; with minimal side effects).  I had hysterectomy and oopherectomy 3/19 and am considering DIEP before being done with Herceptin (9/09).  My hair is thick and skin is back to normal; toenails still weird from the Taxol--I think all the nail stuff is Taxol.  Eyebrows are thinner.  Eyelashes, wah, wah!  I had nice ones, not anymore.

  • denny123
    denny123 Member Posts: 1,495
    edited June 2009
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    I have been on Herceptin for 5 1/2 years, get it every three weeks, and will continue for life.

    It has kept my liver mets in remission for 5 years.

    I have NO side effects at all, thank goodness.

    Denise

  • gailian
    gailian Member Posts: 1
    edited June 2009
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    I had no immediate side effects from herceptin.  Days before my 4th treatment was to begin, my onco cancelled the treatment as my Muga scan results went down from 68 to 51.  Unfortunately, somebody made a mistake, because my 3rd treatment had already taken place after the 51 score.  The result was me in the ER with severe chest pain.  I now think from reading other posts that it might have been pleuritic chest pain.  By the next Muga scan I was down to 38 and had pneumonia & and enlarged heart, along with probable heart failure.  Referred to cardiologist to determine if it was herceptin or a/c & he thinks herceptin, as it did repair itself.  Last muga was 51 and now get echo's for lesser radiation.  It was suggested to try herceptin again 6 months later & I did made an appt., but couldn't go thru with it.  I think my reaction to the drug is a fairly rare one.

  • Gina_M
    Gina_M Member Posts: 108
    edited July 2009
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    Hi all,

    I am heading into my 16th treatment with Herceptin this Friday (the 3rd).  Then only one more to go!  I receive Herceptin once every three weeks.  I finished 4 rounds of TCH in September 2008 and am hormone recpetor negative and Her2 positive.  So this is it for active treatment for me.  In terms of side effects since I have been on Herceptin alone - none have been debilitating, but many seem to be cumulative (getting worse with each treatment).  Tiredness,getting "winded" easily, losing my eyelashes 3 times so far, pretty annoying hip pain, full body "pins and needles" tingling whenever I get warm (a neuropathy I think has been linked with Herceptin), a numb spot on my head (this one is VERY recent), and periodic headaches.  None of this has been debilitating in any way, but annoying and sometimes scarey.  I am walking about 60 minutes a day; my MUGAs are still really good (around 75%), and I am following my onc.'s orders to keep my heart rate below 128 (the level for aerobic benefit for someone of my stature).  My question for those of you who have finished - how long does it take for the SEs go away after your last Herceptin?  (My onc. says I will feel like the energizer bunny when I'm done.)

    Gina

  • bre16
    bre16 Member Posts: 4
    edited July 2009
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    hi my onc just stopped Herceptin on me today and never plans on putting back on it. i started it in march 09 every three weeks after the third dose i was having manic side effects. uncontrolled crying and angry that would then turn into laughing uncontrollably for hours along with server head aches leg aches chills. they took me off of it for six weeks and after about 3 or 4 i felt great but then started me back on it at smaller doses once a week first one last Thur and i was crazy out of my mine this week my husband went with me today and told them the smaller doses did nothing and with out any hesitation my onc said no more it not worth altering your life this much or putting in your live in danger and that he had never seen a case her in Dayton Ohio but he looked into it and there have been cases of dangerous side effects reported.

  • bre16
    bre16 Member Posts: 4
    edited July 2009
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    don't even think your a wimp i had only four treatments every three weeks and had such bad side effects my onc took me off of it for six weeks and then started smaller doses once a week i only had one of them and he stopped it today he said the effects for me were more dangerous than taking me off of it. i have done a lot of research I'm a rare case but they have only been using Herceptin for three years in stage one her2n cases so they are still learning about side effects and everybody's body chemicals are different and will react different. i thought i was going insane and i read all these and most women don't have bad side effects but that does not mean everyone wont i am living proof of that and my onc didn't hesitate to stop on me so what you are feeling is real and think that makes you i wimp it can be very hard on your body and mind

  • Estepp
    Estepp Member Posts: 2,966
    edited July 2009
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    Denise... thank you for taking the time  to be here. You are and encouragement to us Her2 gals.

    5 years on Herceptin for liver mets... God bless you and thank you for being here for us.... You Rock!!!!!!!!!!!!!

  • bre16
    bre16 Member Posts: 4
    edited July 2009
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    i wasn't having breathing problems but mental and physical they stopped for six weeks and then started back with smaller doses once a week it didn't work and they have stopped mine for good i only had about 1\4 of my treatments but my onc said it was more dangerous for me to stay on it

  • Cal-Gal
    Cal-Gal Member Posts: 3
    edited July 2009
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    Finished 6 rounds of TAC chemo 5 weeks ago--

    Just finished weekly Herceptin treatment #4--48 more to go....

    Side effects so far:

    • *Fatigue-primarily first and second day.
    • *Joint pain-hips-knee-lower back-toe--(knee-lower back-toe all sights of previous injuries or issues)
    • *Muscle soreness--joint pain much worse than this.
    • *Nails still strong--but starting to peel and tear.
  • Unknown
    edited July 2009
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    Hey ladies,

    Anyone have strategies for keeping your heart strong and healthy during Herceptin?  I assume exercise helps... anything specific, exercise-wise? What about eating? 

    I don't want my MUGA to show a decreased ejection fraction when I go in August, so I'd like to do everything I can to stay strong.

    Laura  

  • Gina_M
    Gina_M Member Posts: 108
    edited July 2009
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    Hi Laura,

    I suggest walking a lot as exercise.  My oncologist told me I shouldn't do aerobic exercise (anything that gets my heartrate above 128) because that increases the likelihood of heart problems with Herceptin.  I'm going for my last Herceptin treatment on July 20th and have maintained my MUGA results above 70% so far.  I used to run half marathons, so this year has been pretty hard for me from an exercise perspective.  I try to walk about an hour 5 times a week.

    Gina

  • cmharris59
    cmharris59 Member Posts: 111
    edited July 2009
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    I started Herceptin with Taxol in Jan 2008. I finished Taxol with serious side effects in Mar 2008. Then I started radiation.  I put on weight and my asthma got considerably worse. I attributed the runny nose to not having nose hairs. I had the same symptom on AC after I lost my hair.  My MUGA scans in May indicated Congesstive Heart Failure from the Herceptin. We stopped the Herceptin in May. The next MUGA scan in July indicated no improvement and my Numbers continued to drop.  I am due for another MUGA scan and a visit with a cardiologist now one year later because my PS is afraid that I still have CHF.  If so, my recon surgery will be delayed again and it may mean changes to my options.

  • cmharris59
    cmharris59 Member Posts: 111
    edited July 2009
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    I also have problems with my nails. They will not grow and break easily. I have neuropathy from the Taxol but I am afraid that I have joint pain from the Herceptin also.

  • MsDebS
    MsDebS Member Posts: 2
    edited July 2009
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    As soon as I started the herceptin and taxol I developed a serious UTI with substantial bleeding.  Had to be put on a maintenance dose of cipro, and my blood count dropped to 9.  Now that I am done the taxol my symptons are strange to say the least.  I have this sticky substance coming out of my eyes and from under my arms( which caused a stinging rash the size of a saucer) and from under my big toes one of which I just lost.  I am light headed also.  My nose runs all the time.  My energy level is coming back but I still have numbness on my finger tips and on my toes.  I start rads on Monday.  At least my hair is coming back in.  Going to be a long hot summer I'm afraid.

    Deb

  • ggoff0124
    ggoff0124 Member Posts: 4
    edited July 2009
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    OK, well now i know why my once awesome nails now look HORRIBLE....i too keep them cut back now. Also thought it was leftover SE from A/C treatments. I also have a  runny nose....had chills the first 2 of my every 3 week treatment. started Taxol & Herceptin Oct 08, surgery, 4x A/C every 2 weeks w/a Neulasta shot. Now Herceptin until October and then I am DONE! (I hope). My worst SE now is the pain in my joints of my hands. Cannot close my hands in the morning without a lot of effort. When i try to open my right hand up, all fingers open but my ring finger...then i have to make it "pop" up. Fingers feel bruised all day...just worse at night. Onc is doing a blood test for RA and Lupus when i go for my treatment next week. My hands didn't hurt like this with the Taxol/Herceptin.

  • juanita63
    juanita63 Member Posts: 3
    edited July 2009
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    in sept i will be a 5 yr survivor. and the only lingering side effect i have from herceptin is i still have some sinus issues. get alot of sinus infections. and a weird pressure in my right ear nobody can figure out.

  • Lhall
    Lhall Member Posts: 5
    edited July 2009
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    Lhall wrote:

    Hi I'm not sure if I'm on the right thread,but my question is how do you know if the Tamoxifen is working? Cause I heard if you don't have hot flashes or anything it's not working is this true? I don't feel any difference with or without it. Is this normal?

                                        thanks Lynn