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Herceptin - Quick Side Effects Poll

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Comments

  • Bold
    Bold Member Posts: 306
    edited July 2009

    Just thought I would say that I have had a few side effects. I have a nasty taste in my mouth all the time starts to ease up nearing the three week mark. It tastes like our urine smell day of infusion (yuck) I just finished rads so I can not differentiate the tiredness yet. My nails are thrashed from chemo but seem to be growing back. I get winded when I get excited or overextended. Could be from deconditioning. But tttttthats all folks. I'll take it and pray we are healed and healing!!!!!!

  • Lcharmie
    Lcharmie Member Posts: 156
    edited July 2009

    Hello ,

    I just thought I would put in my 2 cents---I too have been on Herceptin before, actually for the time of 4 years-- sometimes with Navelbine---yep every week!!!  It was the least of worries when it came to chemo, and I have been on I feel quite a few, Adramycin, Cytoxan, Taxol, Xeloda, Taxotere, Navelbine, Tykerb.  Right now I have not had Chemo for 7 months,  after 6 years of Chemo--yep every week and with the pills every day.  In between the times I have had  Rads in '99 and '06.   Oh yeah, I was suppose to be telling you all about the side effects of Herceptin, I had the most horrible Chills and a fever 101, on the first infusion.  I remember always having sinus problems, the Dr. termed as Rhinitis--all the same, runny nose, but I had hairSmile so I never complained about this med.  I thought my energy was good--till I have been off of the Chemo these many months, my mind and my body compromised, for what I thought was good energy-- as I feel really great now, My Dr. and I decided to give my body a break from Chemo, and the area where we could see the Ca, we see none---this is with many,many prayers!!  Thanks for letting me share!!!  Everyone hang in there!!!

    Linda C

  • Gina_M
    Gina_M Member Posts: 108
    edited July 2009

    Hi everyone,

    I had my last (17th) Herceptin on Monday.  I'll keep you posted about when the side effects disappear.  MRI, digital mammogram, ultrasound came back with no evidence of disease.  MUGA was at 73% (virtually no change since Herceptin was started a year ago).  Follow up visit in 6 months.

    Gina

  • Joannem65
    Joannem65 Member Posts: 1
    edited July 2009

    I'm almost done w/my yr of Herceptin.  Started w/ Cytoxan/Taxotere x 4 treatments followed by 1yr of Herceptin every 3wks....

    I cannot tollerate infusion under 1hr.  (several attempts result in back/chest pain, cough & SOB enough that I can't carry on a conversation.)  Running treatment at 1hr minimized the SOB.

    Day following treatment - very tired, mildly achy- not enough to complain about - just off my normal - kind of like a mild flu ache.

    Joannem65  43 y/o now  s/p mastectomy 8/08 w/ reconstruction

  • cmharris59
    cmharris59 Member Posts: 111
    edited July 2009

    Congestive heart failure - stopped treatments - had treatments every week for 2-1/2 months with Taxol, then every 3 weeks for 6 weeks, then stopped. 

    Fatigue, insomnia, mood swings, shortness of breath, and who knows what else? I have som many now....

  • Gayleebug
    Gayleebug Member Posts: 12
    edited September 2009

    Hi all

     I finished TCH in Dec 08 and continued Herceptin every 3 weeks until Aug 5, 09... had my first monthly port flush today, so I'm about a month out from my last Herceptin.  SEs:

    Drippy nose, slowwwwww hair growth, still have very sparse eyebrows and lashes (am hoping these will grow in & grow faster with time), achiness in back and hips, splitting nails (this didn't occur until about 2 months ago--weird; is this a delayed SE?), fatigue, frequent nosebleeds (one nostril only; my onc took a look last month and said it was NOT a SE of Herceptin and I may have to get the spot cauterized by an ENT since it's not healing up.  It couldn't be that wicked cocaine, could it?  Wink).

    P.S.  I'm editing this to add constipation.  How could I forget that??  Still struggling with it and hoping it will ease as I get farther from my last infusion of Herception.  Taking a minimum of 2 stool softeners a day, which don't seem to do much, and a laxative about once every week.

    Everything has been tolerable and I'm thankful every day for Herceptin, which I credit for the CR and the fact that I haven't had a recurrence (yet).

    Hugs,

    Gayle

  • chainsawz
    chainsawz Member Posts: 113
    edited September 2009

    I finished TCH 12/08 but still continuing every three weeks with Herceptin.  For the first few days after my infusion diarrhea, fatigue, swelling of my abdomen-left hand-and port area, muscle aching in leg. Drippy nose all the time.   All manageable compared to TCH.  Now adding tykerb into the mix and soon another chemo - just haven't decided which one yet.   lisa

  • joyce-in-Ga
    joyce-in-Ga Member Posts: 1
    edited September 2009

     I don't know about T.C.H but, I start on Thursday the 24th. I'll know more after a few treatments hope i don't have  side effects or just mild ones ! Thank for the heads up.

  • NanaA
    NanaA Member Posts: 97
    edited September 2009

    Has anyone suggested that herceptin can affect the lining of your lungs.  Pulmonary doc wants me to do a breathing test every 6 weeks because he thinks the herceptin may be doing that and wants to make sure my lung function matches the baseline test I did today.  I am willing to do the test, but this is the first I had heard of lung problems.  I knew there was concern about watching the heart.  That is why the echo every 3 months.  Annette

  • judyserienagy
    judyserienagy Member Posts: 2
    edited September 2009

    I started my Herceptin in April, once a week sporadically due to travel, etc.  But soon I graduated to a triple every 3 weeks and have had no side affects save one.  Three weeks ago I got a "hives" reaction (my hives have come and gone for 5-6 years so I knew what it was) after 200 mgs out of my normal dose of 480.  which was quickly dealt with and no more problems. 

     Yesterday he started me with 50mg Benadryl, dripped the Herceptin in more slowly and no reaction at all.  Nobody in the doc's office had ever heard of anyone having a reaction after so many treatments, so it's possibly a coincidence.  The nurse that hooked me up caused me alot of pain and I got very upset (I hate needles) so it's possible that emotional trauma caused the hives.  If you want to feel like a fool, just pitch a crying fit when something hurts ... in front of all those poor souls wearing stocking caps on their heads. 

    Only about 8 more rounds I think.  I'm leaving for Paris next week and will forget about all this (except the missing boob of course) for awhile.    Be strong, ladies, and thank goodness for Genentech!

  • kim40
    kim40 Member Posts: 125
    edited October 2009

    I just had my forth infusin of Herceptin.  Other than a drippy nose, not much else going on.  I do have some joint pain, but not sure if it is from Herceptin or Femara!!

  • Lcharmie
    Lcharmie Member Posts: 156
    edited October 2009

    I had to start Herceptin again last Monday, the initial dose was a double dose, and I came home and my body hurt from head to toe.  I got on my heating pad, more so for comfort, and took motrin and slept, it was better when I woke up,  it did not bother me the next days.  I will be getting it every week along with Navelbine.  I have had both meds before.    I have had my 2nd treatment on Wed. with no problems.

    Take care all and good luck!!

    Linda C 

  • REKoz
    REKoz Member Posts: 164
    edited October 2009

    I have the requisite runny nose issues and fatigue. My hemoglobin has not gone back to normal since the end of chemo in May. I'm staying at about 3.5 and thinking it's the herceptin. Of course my energy is way up compared to chemo but nowhere near what it was pre diagnosis. I am encouraged to read that this should change at the end of herceptin in January.  I hope my counts go back to normal so that I can know real energy again.

  • rosemary-b
    rosemary-b Member Posts: 57
    edited October 2009

    I am a year and a half out from Herceptin and my hair and nails are still growing very slowly. They turned dark and crumbly during treatment and the darker area is still not grown out. After a year and a half I still don't know if theyare permanently weak. That could be from chemo too.

    I have heart damage and think that oncs who tell you Herceptin will be a walk in the park do you a disservice. If you have shortness of breath, even if you think it's from asthma or a virus, talk to your onc. If it doesn't go away in a few days, get a MUGA or echo before your next Herceptin.

    I had ACTH which I know is not used as much now, two years after I started BUT heart damage still does happen.

    I had adjuctive chemo for a stage one tumor and my drs tell me I am more likely to die from heart problems than cancer now. Yippee.

  • Janfraser
    Janfraser Member Posts: 1
    edited October 2009

    After a mastectomy for stage 2, her2+++ bc last year I did four cycles of taxotere and carboplatin with herceptin starting in cycle 2.  I had 18 infusions of herceptin and finished in early September.  I'm 69 yo.  The taxotere and carboplatin really knocked me around but I had no noticeable reaction to herceptin, apart from a slightly dribbly nose, bit of a dry cough sometimes and thin, split nails which I guess will take a while to grow out.  My blood pressure may have gone up slightly - hard to know.  However, I do notice now that my brain and memory seem totally back to normal.

  • calicat422
    calicat422 Member Posts: 1
    edited October 2009

    I am 6 months into a every 3 week cycle of herceptin.  I had some aches & pains after the first 2 treatments but went into a severe chill & fever that lasted almost 24 hours after the 3rd treatment. That never repeated itself thankfully but I have now developed numbness on the outer side of my left arm which never goes away. Also this last treatment (#11) had transient numbness around my mouth and left cheek.  I also for the first time had near incontinence for one week that neary scared me that I would not be able to hold my urine long enough to get to the BR. I haven't read of anyone elso having this side effect but my primary physician sees this in the realm of possibilities since the bladder is a smooth muscle like the heart. My echo shows my ejection fraction going down from 68 to 56, still in the realm of normal. I do hhave the runny nose, crappy nails, eyebrow hair loss, and the muscle aches of my upper arms and hips. I'm not looking forward to my next treatment. I fear incontinence, especially if there is a chance of permanence. Anybody else have this side effect?  Thanks to everyone who writes in.  Only a fellow sufferer can purely understand us. You have helped me a lot by reading your blogs.

  • chainsawz
    chainsawz Member Posts: 113
    edited October 2009

    I have been on herceptin since 09/08 and have been having the same issue with my bladder, but didn't think it was a side effect of it because no one else seems to have it.  I chalked it up to being 45 :>  At times, I have a hard time holding it and burning.  I feel like my bladder is very full, but there is just a little dribble.  They check me all the time for bladder infections, but I never have one.  Maybe it is a rare SE of herceptin that we are experiencing?  I found if I get even slighly dehydrated, then the symptoms are aggravated.  I have to keep super hydrated and that seems to help everything. 

  • BBinCalifornia
    BBinCalifornia Member Posts: 2
    edited October 2009

    Hi,

    I just finished 4 weeks ago my  one year of Herceptin, once every 3 weeks

    Side effects : NONE that I am aware of . I just felt kind of depressed the last months but I am pretty sure it was the aftershock of the chemo and radiations etc etc, not the Herceptin (but who knows) 

    I had effects during the chemo but since they stopped when the chemo stopped I guess they were due to all those poisons, not the Herceptin.   

    My oncologist advised to keep the port-a-cat one more year; since it does not bother me I don't care. 

    Hope this helps you. 

  • BBinCalifornia
    BBinCalifornia Member Posts: 2
    edited October 2009

    oops, me again 

    I forgot about the joint pain.... very stiff and sensitive/painful feet in the morning for several weeks (luckily only for 5 minutes, ) and painful hand  joints, ... but I do not know if this was Herceptin because it was not like this for the whole year and it disappeared before the end of the  treatment .  I took Glucosamine, that might have helped too. 

    So , I do not know if this is relevant but prefered to tell  you anyway.  

    \

  • terrilee
    terrilee Member Posts: 1
    edited October 2009

    After surgery and AC chemo I had a loading dose of Herceptin with Taxol. The nurses asked if I was ok after I'd started the Herceptin because I turned so pale. I had neuropathy in my face, nose and tongue mostly. Oncologist said that was rare and she hadn't seen it before. Since then I've finished Taxol and radiation and changed to Herceptin every three weeks.

     Continuing side effects have been drippy nose and constant cough, due to asthma probably.

    A few neuropathic twinges and numbness, especially after infustion.

    The drowsiness after infustion has mostly become less, except after I had a virus.

    My nails were very bad and my fingertips are ragged and split. BUT five drops of BioSil twice daily helped a LOT. I forgot to take it for awhile and they got worse again, so I'm pretty sure its the Herceptin.

    My hot flashes interfere with sleep and my chemo brain is not entirely gone, but I'm not sure those are from the Herceptin.

     All of it is manageable and I feel lucky that my heart and general health are fine. I've tried to walk most days and started a weight program. Mostly for my lymphodema. I have my last infusion on Dec 2, so I look forward to being done after only two more! 

  • Catherinedonnelly
    Catherinedonnelly Member Posts: 1
    edited November 2009

    Hi,

     I sarted Chemo and Hereceptin on 15 July 2008.  Had four sessions of Chemo - Taxotere and Cyclsphosphamide and Herceptin alone since, every three weeks - this is to continue until next June.  I am also taking Tamoxifen.   Since having my second session of chemo and Herceptin, I have been experiencing what I can only describe as alergic reaction - itching of my head, watering eyes and runny nose.   At first I thought it was the antiobiotic that I was on during chemo and then I concluded that it was the chemo.   I have been unable to wear my wig.   There is no sign of any rash anywhere on my body.   I was expecting things to improve when I finished the chemo but unfortunately this has not happened.   I informed the doctors and the oncology nurse but with the exception of my GP, they could not give me any information. It was suggested that I go back to the people who sold me the wig!   My GP did suggest that the Herceptin was the one constant factor but when I made enquiries at the Oncology Dept. of the hospital I was told that this was not possible; "THERE ARE NO SIDE EFFECTS TO HERCEPTIN"!   During the past three weeks I have noticed that my eyebrows and eyelashes have almost disappeared - I haven't had chemo since 27 August 2009.  I have also experienced sore fingers - at the top of my finger where the nail ends - sometimes infected.  My most recent dose of Herceptin was on Friday 20 November.  During the past week my head has been itchy, my eyes and nose have been 'streaming', my fingers are sore and I have felt depressed.  In desperation I decided to get some information on the internet and I'm so glad that I've found this site. I'm also very annoyed at not being listened to!

    CatherineD

    Ireland

  • ChemoSobby38
    ChemoSobby38 Member Posts: 3
    edited November 2009

    really no complaints with Herceptin.  I completed a year of herceptin 2006-2007 and I can only remember a runny nose the day after treatment.  I hope this helps.

  • Gina_M
    Gina_M Member Posts: 108
    edited November 2009

    It is irritating when people constantly tell you no side effects with herceptin.  Maybe they were long term side effects of the chemo, but I had a needles & pins itchy reaction whenever I was warm - the condition came on fairly often for well over a year. I had a ruuny nose, but since I completed the Herceptin (July 09), I now have runny/weepy eyes and have had several bouts of eye infection (maybe unrelated).  I lost my eyelashes and most of my eyebrows 3 times after I finished the regular chemo (while I was on Herceptin).

    I am definitely on the mend, with very few side effects (except for the eye thing); I feel very good, have my hair back, and got a relatively clean bill of health at my last visit with my oncologist yesterday.  I will now be followed by my surgeon.

    Gina

  • tarajila
    tarajila Member Posts: 1
    edited December 2009

    Hello all there

     Im am writing on behalf of my dearest wife who is undergoing a treatment of herceptin since september 2007. Since July this year the onc added avastin every once and then. Meanwhile she suffers from severe running nose, it is almost like an allergic hay fever. I have read her that almost ever one of you had some running/dripping nose. The onc. wantetd to give her Benadryal but the side effects were pretty bad. She is using homoeopathy, chinese herbs, but so far nothing has helped really. Does anyone of you have any suggestions what to do to milder this side effects. It is very tiring and draining for her.

    Thank you all in advance

    Claude (for Jila) 

  • phoenixsmom
    phoenixsmom Member Posts: 1
    edited December 2009

    Hi there.  I just found out that my ejection fraction, which started at 50 and then went to 48 is now down to 39.  I have been on Herceptin since July, every 3 weeks and have really only had a bit of leg and arm muscle pain other than that.  Does anyone know how long it takes for the heart to bounce back?

  • ROCMAX88
    ROCMAX88 Member Posts: 1
    edited December 2009

    Hi Ladies

    I am on Herceptin alone and will finish my last 3 weekly infusion on Feb 12 2010.  I have had the runny nose, diarrhea, burning of the stomach, bloody nose, fatigue, cough and aches.  But they are reletively mild and come and go from one infusion to the next.  What I have experienced and don't know if anyone else out there has, is dizziness.  When I am lying in bed and turn my head from side to side the room starts spinning.  Or if I get up to quickly I get really dizzy.  This only lasts a moment or two and then I am able to get up and go about my day.  Please let me know if any of you have experience this and if so how quickly does this subside after treatment??

  • pmellon
    pmellon Member Posts: 19
    edited December 2009

    Hi HelenK88 -  I am on Herceptin alone and will finish the beginning of March 2010.  I also have experienced varying degrees of dizziness that I attribute to the Herceptin.  It is usually very mild and comes and goes.  I wish I could tell you how quickly it subsides after treatment for sure, but I can say I had to miss a dose due to headache issues, and the headaches and dizziness episodes disappeared.  The headaches have not returned, but he dizzy spells have. 

  • CaseyDoodle
    CaseyDoodle Member Posts: 22
    edited December 2009

    I completed herceptin in June 2009.  Took it weekly for 6 weeks and then every three weeks for a year.  Absolutely no side effects.

  • suzieq60
    suzieq60 Member Posts: 1,422
    edited December 2009

    I have really sore knees. I don't know if it's from the herceptin or not. I usually take anti inflammataries for my knees but haven't been taking it since dx. I can hardly walk. Anyone know if they give anything for joint pain from herceptin?

  • Vegasmom
    Vegasmom Member Posts: 3
    edited December 2009

    I finished my TC the end of July & contiune to receive herceptin every 3 weeks. I was having terrible headaches over my left eye and really drippy nose.  The last 4 treatments I have had  have them run it over an hour & I swear it helps so much!  ( even my doctor said it would not make a difference) but  I will not go back to the 1/2hr. treatments!   Still slow hair & nail growth, but at least the headaches are gone and the drippy nose is not so bad!   Hope this helps........

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