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Herceptin - Quick Side Effects Poll

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  • cheers247
    cheers247 Member Posts: 57
    edited May 2009
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    I had my first herceptin treatment 2 weeks ago, I'm on TCH every 3wks.  Runny & bloody nose, severe diarrhea, achy & weak, Still, even after two weeks, I have one week till my next treatment,and I hope I have at least one good day before that.  I've lost 15 lbs. in these two weeks.  It's no fun!

  • ango74
    ango74 Member Posts: 31
    edited May 2009
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    I feel bad for posting this but I have had zero se's from Herceptin.  The day of tx I am a little more tired than usual but that is it. I feel blessed after reading through this thread. I have 5 more to go so I hope I don't jinx myself.

  • britbaby
    britbaby Member Posts: 1
    edited May 2009
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    Hi

    I started my journey with Taxol, Herceptin, been off Taxol since December and still on herceptin, but I have been on it since Oct 2007, I am confused as no one seems to do past 1 year. I had no problems with Taxol, but now finding with herceptin weight gain really bad, and one that no one else seems to have had, a few hours after my infusion I get burning sensation when I go pee, thought at first it was urinary tract but it would dissapear next day, took me a while to figure it was herceptin, so now I drink plenty and get more saline with infusion, thin nails to, but now I am getting tired and fell I should be off herceptin, what do you girls thinks???

  • SusieZeeMears
    SusieZeeMears Member Posts: 5
    edited May 2009
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    Hi to all of you. I'm new to this sight,been posting on another & was curious to see what other's have been thru with the herceptin. From what I've read, I seem to be the only one who has suffered serious side effects.  I don't want to scare anyone. I started treatment in Oct 07,but then due to acouple of complications,hospital,they took me off it in March 08 & still waiting to see if I'm to go back on it.  I tested high for being allergic & was given small doses every week,then increased it towards the end-upper resportory problems. I ended up becoming crippled,all my joint's hurt,my hands closed up into balls, I couldn't stand straight,they thought I might have rumathoryd arthritis-my case seems to be the only one so far. I had all the other system's you are telling each other about. I was placed on a high dose of pregnosone for over a month-gained 50lbs. So now will go back next week to see what were going to do. I know it's been awhile,but I've been dealing with other medicals problems as well. If anyone ever has this kind of reaction,get help right away. Thanx for letting me share

    Take care  Chow  XOXO Susie

  • snowyday
    snowyday Member Posts: 121
    edited May 2009
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    I'm sorry SusieZeeMeers that your se's were that bad.  I am having alot of joint pain, hands,  elbows, knees, hips, and my onc doesn't believe it's herceptin.  I also now have really bad heart burn all the time and when I move the wrong way or bend over I have pains in my heart.  I have 7 treatments to go and I am getting more and more afraid of the side effects. I wish so much I was one of the girls that don't have se's, they are so lucky.  It's getting so bad I want to stop the treatment.  Susie I hope that your hands get better and soon.  Good luck and I will say a prayer for you. 

  • lpeters
    lpeters Member Posts: 3
    edited May 2009
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    I just started treatment on May 7 .  TCH - 4 treatments, 3 weeks apart, plus weekly Herceptin for a year, which I've had twice.

    I've had few side effects ~ I've had the runny nose a little and the diarrea, about 3 hours after and loose stools every morning.  Other than that, I feel normal.

    Does it get worse as time goes on?  When do you lose your hair? Does everyone lose their hair on TCH?

  • bre16
    bre16 Member Posts: 4
    edited May 2009
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    i started H in late feb 09 at the time i was also doing radition and had a really back reaction to that 3rd degree burns and a lot of fatigue so i had no idea how H was effecting me and my onc said i should have little or no side effects from H. So i had my last rad treatment about 3 wks ago and about a week after it i felt better than i had in months i had gone thru chemo before that and surgery. last week i had my first h without anyother treatments with it and i feel aweful my legs ache i have no energy running noise cant even seem to focus or make dissions and this is making me very depressed because i thought i was going to get my life back after chemo and rad. my work place has been great thru this but also thought after rad i would be back to my old self and its not happening. im afriad  i will lose my job or 23 yrs and that my family is tired of hereing i dont feel good and dont want to do anything it has help reading tonight im not the only one haveing problems with H but i have another 10mths of it and i just want to feel better know most of you seem like your so much stronger than i am.

  • cheers247
    cheers247 Member Posts: 57
    edited May 2009
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    Bre16, You are strong, these treatments are terrible, and make you feel weak, but you are not!!  I am on TCH every three weeks, my second treatment is tomorrow 5/19.  I will have TCH for 6mos, then a double mast & total hyst, then 6wks of daily rad, then more chemo & herceptin for another year.  I am having a really hard time with herceptin too, runny/bloody nose, very acidic diarrhea, headache, dizziness, joint pain, weakness & fatigue.  My onc. says this is atypical, and does not know why it is happening, but the more I read here, I don't think it's that atypical.  I am having trouble focusing also, you are the first person I have seen to post that, I wonder if anyone else is experiencing that.

    IPeters - I hear that it gets better as time goes on....  I hope that's  true!  Also, it's the Carboplatin that causes the hairloss, not everyone loses their hair, but I did, 17 days after my first treatment with TCH.  Best of luck to you both!!  I'll be praying for you! Keep posting on your progress!  Loves, Jessica

  • Tucheta
    Tucheta Member Posts: 1
    edited May 2009
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    Britbaby,

    Thanks for posting about that burning sensation when peeing Smile. I was worried it is an infection or some other urinary tract issue, as I did not see this SE mentioned anywhere else.

    My other SEs so far are drippy nose, sneezing, diarrhea, and bad finger nails. I do have more stomach problems, including very bad heart burn (except for water and milk, almost everything else causes bad heart burn), but I suspect these are SEs from chemo and rads...

    I finished chemo - Farmorubicin and Taxotere - in October 08, and rads in December 08, started Herceptin every 3 weeks in Jan 09.

  • SusieZeeMears
    SusieZeeMears Member Posts: 5
    edited May 2009
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    Snowyday-Thank you.  Sound's very familiar to what I was going thru-let your onc know about me, I was a 1st according to mine. After I came off it &  placed on the pregnosone-took a couple of weeks but then the joint pain ceased & I was able to walk again & open up my hands along witht the other side effect's .My eye sight has been affected as well,but think that is part of the Chemo.  I go Friday to see where we need to go from here. I get abit upset with some of the medical staff,everyone is different & being placed in a static's group saying no one else reacted that way-well, there are those who do have different reaction's. All of my Dr.'s/Surgeon's & Onc have discovered this- I leave them scratching their heads.  We have to be our own advocates. I've been dealing with several medical issues for the past 2 1/2 years, never did I realize how much I would learn & still am about many many different procedures.  My heart goes out to all of you in our struggle to beat this thing. Power prayers to all

    Take care  Chow  XOXO SusieZee Mears 

  • simojt_jeffrey
    simojt_jeffrey Member Posts: 1
    edited May 2009
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    Hi everyone....

    I have to share with you all about a woman that have a breast canser ....And i recently read the story

    this story was so wonderful and inspring....here the link ....just post a comment in me if do you have suggestion

     http://www.thankgodforebooks.com/breast-cancer-parr-rud.html

  • GramE
    GramE Member Posts: 2,234
    edited May 2009
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    Excuse me, simojt, but do you have BC?   you have posted this message 5 times.   

  • GointoCarolina
    GointoCarolina Member Posts: 95
    edited May 2009
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    I had Herceptin last Thursday,Sunday(yesterday) I started feeling terrible, nausea, so tired and today is a little worse, very light headed.I am also having a lot of muscle tremors and twitches, does anyone else have this? They did draw blood to check for any imbalances, but I think it is the Herceptin.I am wondering if I went back to weekly infusions if it would help.The side effects seem to get worse with each treatment. Jackie

  • cheers247
    cheers247 Member Posts: 57
    edited May 2009
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    Jackie, I have had 2 doses of H so far, I get very dizzy/lightheaded, headache, weak etc, my onc. thinks it's the chem I get too, but I think it's her H becasue I get the H first, and the lightheadedness starts during the infusion, and lasts a weak or so, it's so bad that I can't drive or read.  I'm hoping it gets better as I go along.  Are you getting any chemo with your H?  I hope things get better for you!!  Love Jessica

  • GointoCarolina
    GointoCarolina Member Posts: 95
    edited May 2009
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    I finished my chemo in January (TCH) and was extremely sick through out.I am thinking the light headedness is because my sinuses are acting up,so have been using the Neti pot twice a day.I do feel better than when I posted before,but still tired and now have a head ache.Do they give you saline with your herceptin? When I had my chemo, they give me the H last and always gave saline with it and they still do.I hope you start to feel better too! I hope all of us do!!! Jackie

  • cheers247
    cheers247 Member Posts: 57
    edited May 2009
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    Hi Jackie, yes, I get lots of saline with my TCH, I had a bad reaction to the taxotere with my second dose, and now I have to switch to Adriamycin, Cytoxin, and H.  Once I am fully recovered from the last TCH, most likely next week I'll start ACH.  I hope I do better with that.  I get really tired too, and I get flushed during the H infusion, but for some reason my Onc. doesn't think the H causes any side effects.  I know it does!!  Hang in there!!  Jessica

  • texasmom
    texasmom Member Posts: 14
    edited May 2009
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    I have two more treatments of Herceptin which I am taking every three weeks for one year. I have had runny eyes ever since my first chemo treatment and continuing during my Herceptin only treatments. It is driving me nuts! I have had a little runny nose and a couple of times have felt light headed within the last month. I have lost all my energy and feel the need to sleep more than usual each night. I have achy joints and bones which seems to have gotten worse as treatment progressed. The fatigue seems worse to have gotten worse also. I have had some depression on and off.

  • snowyday
    snowyday Member Posts: 121
    edited May 2009
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    Simponi (golimumab) I know this is not Trastuzumab (Herceptin) but it is another monoclonal antibody.  In the past few weeks the FDA has sent out warning in regards to a few drugs ending with MAB Monoclonal Anitbodies.  Now this one in regards to fungal infections.  I know alot of us complain about fingernails an toenails, those are fungal infections.  I am going to write the FDA again about my se's. My gut instinct about this drug has been bugging me for so long and I tell my onc every visit.  My treatment was put off for two weeks I was very sick with a Virus and my stomach started feeling softer on the top, the puffiness was going away, my heartburn and heartpain disapeared, and my energy started coming back.  Yesterday I went for treatment, woke up this morning my eyes are so swollen again, have to push to urinate, and after yogourt (of all things) I have heartburn and heart pains all back.  Call me paranoid, but I'd rather sound like an idiot than suffer side effects that may not go away. 

    Audience: Rheumatological healthcare professionals
    Centocor Ortho Biotech and FDA reminded healthcare professionals of the risk of serious fungal infections associated with TNF-αlpha blockers, including Simponi [golimumab]. FDA has reported that histoplasmosis and other invasive fungal infections are not consistently recognized in patients taking other TNF-αlpha blockers including Cimzia (certolizumab pegol), Enbrel (etanercept), Humira (adalimumab), and Remicade (infliximab). This has resulted in delays in appropriate antifungal treatment, sometimes even resulting in death. It is important that all adverse events potentially associated with Simponi be reported so that the adverse event profile reported in the prescribing information can be updated appropriately as post-approval experience is gathered. Centocor encourages reporting adverse events to Centocor at 1-800-457-6399 or to the FDA MedWatch program at 1-800-332-1088.

    Read the complete MedWatch 2009 Safety summary, including links to the Dear Healthcare Professional letter, Prescribing Information, Medication Guide and previous 2008 MedWatch alert, at:

    http://www.fda.gov/medwatch/safety/2009/safety09.htm#Simponi

  • KFM52
    KFM52 Member Posts: 1
    edited May 2009
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    Just found this forum today, 3 days after I finished my last Herceptin.  I had CT x4 adding H on the 2nd one and then continued H alone for a year.  I was wondering if the Herceptin side effects were all in my head, but my onc said that he had other patients with similar effects.

    I had (still have) a constant stuffy nose, frequent headaches - especially the 24 hours following Herceptin, minor diarhea, stiff painful joints and edema in my hands and ankles.  I've also gained 10 pounds -diet and exercise don't seem to help.  I have a port that itches for a few days after treatment, but that is minor.  Other than the terrific headaches, the other symptoms are annoying but don't stop me from doing anything (other than getting out of my chair quickly!)

    I thought that the achy joints were the lingering results of last summer's chemo, but after reading this forum, I'm wondering if its also the Herceptin.  Exercise helps the joints.  When I go for a few days without exercising I feel much worse.  Took pain killers and sudafed for stuffy head and headaches.  Drinking lots of water the day of and day after treatment does also seem to help lessen side effects.

    I got lightheaded and had odd pains in my legs during my second to last H treatment.  It went away immediately, but for the last treatment my nurse slowed down the drip to take 1.5 hrs instead of 1 hour. I didn't have those symptoms and I didn't get a headache!  I think maybe that slowing down the infusion helps your body process the herceptin, so at your next treatment you might want to give it a try if you are having problems with it.

    I'm just posting my side effects because I think it is good for us to share this info.  None of the effects have been scary, unbearable or excessive - just things I noticed.

    I'm looking forward to a life without pumping toxic chemicals!  Good luck to all of you.

  • marsh
    marsh Member Posts: 1
    edited May 2009
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    I've been feeling so crappy after my last few herceptin treatments that I came looking for this discussion tonight and glad I found it.

    Last summer I did A/C, then radiation.  In January '09 I started Tamoxifen and Herceptin.  They told me Herceptin was a breeze, no real side effects other than possible heart damage which would be reversible if it happened.  They said the first treatment could give you some flu like symptoms, and thats about it.

    The first treament I had I felt really foggy and achy, feverish.  After that all I notice was that I would get real tired the night of my treatment.  Now I've had 7 of them, almost half done.  Anyway, the last 3 or 4 times I have noticed that I've felt worse and worse after each one.  I get so groggy and wiped a couple hours afterward, and now it seems to last longer than just that day, also that night and the next day I get ear aches and sore throat, and my hands and feet ache so bad. 

    I have alot of ongoing back and knee pain, it gets so bad I have a hard time getting up after sitting or laying, and and once I'm home from work I take vicodin in the evenings for it.  Also have terrible congestion/runny nose issues.  Feels like I'm on the verge of a cold all the time and the runny nose thing is really annoying, bend over and out of no where my nose is draining.  The last couple months I've noticed some stomach issues too, nauseaus feeling, loose stools, find myself wondering if maybe I have a little flu going on quite often.  I never put it all together as being due to Herceptin, but it makes sense now.  Alot of pain and sinus issues, it sounds like its much more common than they said.

    I've been feeling like a wimp because its supposed to be a breeze, but apparently Herceptin does have some side effects.  I should finish with it in December, I can't wait.  

  • GointoCarolina
    GointoCarolina Member Posts: 95
    edited May 2009
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    Does anyone have delayed side effects? After my last herceptin only on a Thursday,I started feeling off on Sunday and it has been progressively worse every day,fatigue and just feeling yucky,it will be two weeks on Thursday and yesterday I started with diarrhea.I was feeling really good the week before the herceptin.Jackie

  • cheers247
    cheers247 Member Posts: 57
    edited May 2009
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    I get really dizzy and have headaches with H. A few days after my treatment the loose stools start, and last a few days then go back to normal. I'm weak and tired most of the time.  It seems strange to me that so many Onc's don't want to "admit" that H causes all these side effects, but clearly all of us here truely feel what we feel. Jessica

  • judyserienagy
    judyserienagy Member Posts: 2
    edited May 2009
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    I've had about 6 Herceptin infusions since March, supposed to be weekly but I travel and we moved the office and the internet went down ... you know the drill!     Not a single side effect, so I had my first triple late on Friday, with no plans for the weekend in case I got the "vapors" and had to sit around all day.  It's Sunday afternoon and I went walking for an hour and still feel fine. 

     My bottom line is that as long as I can sleep through the dratted adrenelin rushes, I can handle anything.  How long does this menopause stuff last?  Seems like 15 years already and without the hormone replacement, sleeping is elusive.

  • SusieZeeMears
    SusieZeeMears Member Posts: 5
    edited June 2009
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    Hi Ladies.  Wanted to check back with you all & let you know that I strongly feel the Herceptin is the cause of the havic on your bodies.  As I mentioned  a couple of weeks ago, I went back to my Cancer center to discuss going back on the Herceptin, & due to all the major problems I had with it,it was decided I was not going back on it. I only had 6 treatment's. I'm telling you all that you are correct in the fact this is causing all this. My Onc's told me that to his knowledge I was the 1st to react this way to the herceptin,but I'm reading about some of you...keep an eye on it so it doesn't get worst. I had to see a arthritis's specialist to let them know I didn't have it,it was the side effect of herceptin!! Like I mentioned, I couldn't stand straight,walk with out major pain,my joint's hurt everywhere,hand's balled up-blood pressure soared.Off Herceptin, Placed on pregnazone(?) for over a month to get me able to feel 1/2 way normal, all the other side effect's your describing, I had too & they went away after the month. I wish the best for all of you.  I too believe if we share our experiences, we can help each other get thru them.  We all understand a bit more cause been there...done that.  Take care  Chow  Susie

  • GratefulGal
    GratefulGal Member Posts: 4
    edited June 2009
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    Ladies - I have to agree with Susie that Herceptin is the culprit for the SE's you are experiencing. I went on the website for Herceptin and the most common side effects were headache, backache, diarrhea, fatigue, runny nose, flu like symptoms, etc. My onc had told me that herceptin would be a breeze compared to chemo - and while it's not as severe as chemo was, it still can be very dibilitating. I will finish my year of Herceptin in August (at least that's the plan), and the SE's have been pretty constant for me. I have had all of the above and trust me, they are NOT your imagination.

    Judy - I am too going through forced menapause (ovarian shutdown with Zolodex for me) and have one question 'what is sleep again?' By the way, my onc put me on Effexor to help with the hot flashes, and I have to say - it really has helped!

  • smarie
    smarie Member Posts: 3
    edited June 2009
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    Hello,

    I'm wondering how your bone mets were diagnoised (bone scan, mri, pet scan)?  Were you having back pain?  If so what did if feel like ?  Was your oncologist surprised since you were on herceptin?

    I hope you are doing well now!

    Thanks for any info.

  • mary6204
    mary6204 Member Posts: 34
    edited June 2009
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    Just noticed this topic.  I had 6 rounds of TCH last year with the final chemo July 9th.  I was so sick with my treatments, each one worse than the one before.  I continued Herceptin every 3 weeks with my final treatment March 3rd.  I had zero side effects from the Herceptin alone.  Maybe I was lucky, but not so much with the chemo!!!  I feel great now.  Good luck, gals. Next summer will be better.  I am enjoying the wind in my hair again.  Mary

  • agreatdaytopaint
    agreatdaytopaint Member Posts: 1
    edited June 2009
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    Ladies, I joined this group solely because I was searching for blogs on Herceptin side effects, and found your comments to be so helpful.

    I finished 4 rounds of chemo (Taxotere and Cytoxin) in mid-March, and have been receiving Herceptin weekly since late December. 

    After my very first Hercep treatment, I developed pronounced shaking, chills and a fever, but I had been warned to expect this. These symptoms subsided with Benadryl and Tylenol. Never had a repeat of this since. 

    During chemo I kept all my eyelashes and eyebrows, but lately I've noticed that they've begun to thin substantially, and the little bit of hair I've grown since chemo ended is beginning to fall out (not all, but more than used to be normal, pre-chemo). At first I thought it had to be the radiation (I'm halfway through my 32 prescribed treatments) but both the Onc and Rad MDs said this is not a Rad SE. I even went to my primary care MD and was tested for thyroid deficiency, but my count was normal. Glad to read that some of you are sharing this SE. 

    I also have the clear runny nose so many of you describe. Glad to know it's the Hercep and not old age creeping in! (My 94 year-old mother has a chronic nose drip from glaucoma meds.)

    Before reading your posts I attributed my grouchy joints to chemo after-effects, but now I am more inclined to blame it on the Hercep. Nice to know these symptoms may subside as well. 

    I must say I'm feeling more exhausted from the radiation than anything else. Hercep really hasn't caused any noticeable loss of energy. I do get quite drowsy from the Benadryl I receive along with the infusions, but I've had the nurses reduce the dose to one third, so I can drive myself to and from treatments.  

    How great it is to read your posts - even though some of you are having a hard time. Do hang in there, as it WILL get better. 

  • flower14
    flower14 Member Posts: 1
    edited June 2009
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    Had my third round of Herceptin this past Monday.  The first two rounds went well.  Almost through the third I had an allegic reaction, warm head to toe, numb and tingle from neck up.  Throat swelled.

    They stopped it and gave me Benodryl, Tagamet, dexamethasone and this helped.  My heart rate was high and blood pressure 170/100.  Later that night when meds wore off I had reaction again and went to ER.  They loaded me up and sent me home with more meds.  Still had some problems Wednesday, but better by Thursday.  Has this happend to anyone else?  Going to give it another try Monday with pre-meds.  Worried about it all happening again.

  • fayhen
    fayhen Member Posts: 1
    edited June 2009
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    I'm about to get my 11th of 17 Herceptin treatments. I became hyperallergic to it several infusions ago, so now I have to be premedicated to be able to handle it.  That's not so bad, I guess. But I've had what seems to be pneumonia, or might be pneumonitis (related to the radiation I've received), for two months, and now I'm thinking that maybe it has to do with the Herceptin.  Has anyone else developed lung problems related to Herceptin?

    Thanks.

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