Herceptin side effects

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Kasey
Kasey Member Posts: 695
edited June 2014 in HER2+ (Positive) Breast Cancer
I started Herceptin last Thursday. I will be doing it every three weeks. I know one of the side effects is flu-like symptoms. How long does this usually last? I am still getting chills, especially in the evening and at night.
Thanks in advance.
Kasey
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  • jan125
    jan125 Member Posts: 411
    edited February 2007
    I am not sure, but call your onc. My group has someone to talk to 24/7.

    Jan
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  • mccarroll
    mccarroll Member Posts: 360
    edited February 2007
    I'm doing the 3 week infusion. Find that I get flu-like symptoms the day after tx and am usually in bed early that night. I also have a runny nose all the time! There are used Kleenex piling up in every wastebasket and I don't dare leave without a small package of kleenex! I also think herceptin slows hair growth. I'm 3 months out and my hair is about 3/4" long. I think it has stalled but DH claims he sees remarkable growth. He's so sweet.

    I think the SEs of herceptin are minimal and manageable. A walk in the park compared to AC/T. Good luck.

    Karen
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  • lkc
    lkc Member Posts: 1,203
    edited February 2007
    Hi Ladies,
    I have been on Herceptin awhile now, and I have found my body got acclimated to it. Only thing I have now is the persistent nose drip!

    Linda
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  • momto4girls
    momto4girls Member Posts: 93
    edited February 2007

    I finished 1 year on Herceptin with no se.

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  • nitewind
    nitewind Member Posts: 64
    edited February 2007
    I was having flu like symptoms while on the herceptin. At that time I was getting it every three weeks. I suggested to my onc that I would like to try the once a week infusion and see if it made a difference. I'm on my fourth weekly infusion and I have felt great!! No flu like symptoms or any side efffects (knock on wood) Just a suggestion! Good luck!
    Susan
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  • tropicmom
    tropicmom Member Posts: 88
    edited March 2007

    HI, just had my first herceptin. Went well at the clinic, but as soon as I got home, I started having chills and body aches. After about 2 hours, I was shivering so bad, my teeth were chattering. This went on from about 6-12:30 when it finallly started going down. I took a compazine and went to bed. I eventually got up at about 1 am and took some tylenol for the aches. Ugh, what a night. Today, am ok, but I hope I don't get this every time. I thought that reaction was supposed to happen while infusing, not after. Whew. I keep hearing how herceptin is faily mild with minimal s/e. Hah, that's the way my luck has been going fromthe beginning.

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  • mccarroll
    mccarroll Member Posts: 360
    edited March 2007
    I get flu like symptoms 24 hours after my infusion (I feel great after the infusion and usually go shopping). It last about 12 hours then I'm good to go again. Except for the constant runny nose, herceptin is a piece of cake after chemo!
    Karen
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  • jennid1
    jennid1 Member Posts: 13
    edited March 2007
    Tropicmom,
    I always take three tylenols as soon as I sit in the chair for my herceptin infusions. It really helps me with the stiffness and the chills.
    Best Wishes,
    Deb
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  • lexi4
    lexi4 Member Posts: 1,074
    edited March 2007
    The tylenol did the trick for me too. I hope that will help you also.

    Hugs,
    Lexi
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  • Patrish
    Patrish Member Posts: 251
    edited March 2007

    was my only real side effect. I cannot even begin to count the number of loads of laundry (always the dark ones) that I have washed with kleenexes!! I take an antihistimine every day, it does help. best, Pat

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  • anisah60
    anisah60 Member Posts: 3
    edited April 2007
    Hello All,

    I have been on Herceptin for just over 6 months and am finding my fine motor coordination seems to need great concentration. My fingers seem to be stiff and when I tried to do a little hand sewing repair the other day, a 5 minute job took over 30, and that was after I had got the needle threaded (lol). I seem to stub my fingers and thumbs a lot too - chemo brain coming back?

    Has anyone had their finger (and toe) nails disintergrate? Mine suddenly started to flake and break, so far up the nail bed, they bleed sometimes. I will be seeing my Oncologist tomorrow and will ask her.

    I have not noticed a constantly running nose, but I get hayfever at the best of times.

    Needless to say, compared with my experience on Paclitaxol (Taxol), Herceptin remains for me " a walk in the park".

    Anne in Adelaide South Australia
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  • 73gr
    73gr Member Posts: 459
    edited April 2007

    my mother had flu like symptoms 24 hours after the first infusion, cough, fever 100, but only for one day. Since then, she has only a stomach upset for the first 2 days. She also periodically has back pain, headaches, but i don't know if this is from Herceptin. She is stage 4, currently NED.

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited April 2007

    I just started Herceptin three days ago and feel lousy. Depressed, nausea, emotional. My blood sugar skyrocketed. Insomnia. Monday I had a port-a-cath put in, Wednesday had treatment 10:00 a.m. to 3:00 p.m. and it was torture. Sorry, but that's how I feel right now! smile.

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  • Zzap
    Zzap Member Posts: 77
    edited April 2007
    I must be one of the lucky ones as far as Herceptin is concerned. I had it along with Taxol the first 4 times so I couldn't tell which symptoms were from which drug. Since I've been on Herceptin alone, I haven't had any side effects I'm aware of. I get my infusions every 3 weeks. Maybe a little achy in the back and joints, but that may not be because of the Herceptin, I have a lot of degenerative disc issues and a lot of wear and tear on my joints from hard physical labor.

    I have noticed that my nails are trashed now, but it looks like it's growing out from when I had AC, but who knows. All that crap they pumped into my body has done all kinds of strange things to me. I suppose it may be slowing my hair regrowth, but I don't know what to compare that to.

    Lori, hopefully your symptoms will pass. Maybe your body is still in shock from getting your port put in. I hope you feel better.

    Jenn
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  • lisaelder1972
    lisaelder1972 Member Posts: 171
    edited April 2007
    My nose bleeds alot.Does anyone else do this?My nose seems like it's always stuffy and when I blow it,there is always blood.Kinda freakin me out.

    Hugs,
    Lisa
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  • Kasey
    Kasey Member Posts: 695
    edited April 2007
    I usually get Herceptin with Gemzar but I've noticed that my nose is more drippy then anything. I've not had any blood though, I think I'd ask the Onc about that one. Sometimes I'm a little achy but I really don't know which drug is causing that. The chills seem much better now though.

    Hugs,
    Kasey
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  • nagem
    nagem Member Posts: 353
    edited April 2007

    I'm done with Herceptin now, but I definitely got blood in my nasal mucus. I think one of the issues is that your nose hairs fall out along with the rest of your hair with AC/T, so your nasal passages are irritated by not having that protective screen of hairs. Then Herceptin makes your nose run a lot, and ...

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  • Fit999
    Fit999 Member Posts: 119
    edited May 2007
    Im on TCH with a shot of neulasta 1 day after tx. I thought the bone aches and flu like symptoms were from the neulasta, not the H. Ive had 2 of 4 tx and will be on H for 1 year. I also have the dripping nose with very minor bleeding. Told my onc and he said it was all normal s/e. Im going to clarify what is causing what.

    Issa
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  • josied0
    josied0 Member Posts: 66
    edited May 2007
    first of all Lori Cordini...I hope you are feeling better...you have had a lot on your plate all at the same time...give it time.....you are on several chemos at a time too....I am thinking of you and sending hugs fists up!!
    I had 4 a/c every 3 weeks b/c ny drive to chemo was 2 hrs each way and my Dr. thought it would be best for me...then I had taxotere/herceptin 4 every 3....continued herceptine very 3weeks through 35 rads my mUga went down down down and hit 52 then the next one in 3 months was back up to 64....I was so happy my last herceptin is to be JUNE 4....I have had a lot of side effects.....joint pain, head aches, sinus issues....what about fatiuge I am sooooo fatigued right now.....but my sinus infection well whatever happened I ended up with Pnuemonia(bacterial) so even though herceptin has milder side effects do not over do it allow your body and mind and soul to heal.....we luckily caught the pneumonia and a very strong lengthy round of antibiotics knocked it out.....I have had 3 broken ribs probably from rads and coughing from pnuemonia and just had an MRI of brain today to check a lesion that showed up in scans 3 weeks ago...lesion was not even present in MRI.....this was great great news. My biggest questions is about the combo of the other 2 drugs w/herceptin and if I should continue on Herceptin for another 6 months etc. with combo.....staged @2A idc, her2+3.8, er-/pr-, I believe grad 1/2.....I had a bilateral masectomoy in 2/06dx 12/05 had bi lateral b/c I had dcis infiltrated in all my ducts in left breast and only 2 mm of idc outside mams in tissie but clear margins were right at 1cmfrom chest wall....idc was in 2 sentinal nodes 2mm, 3mm and 7 mm in 1 out of 9 auxilla nodes...so even though low grade it had spread beyond SN.....I just want to do all I need to do......I am a single Mother of a 4 year old little boy whom is in CA visiting his Nana and Papa and he said I am sad today b/c I miss my Mommy......need I say more......I want to do all I can to ride our lives of cancer then help everyone else I may do the same.....any thoughts??? Sorry so long I have been gone for a long time
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  • AMKeil
    AMKeil Member Posts: 2
    edited May 2007
    My oncologist gives me the following:
    Emend (orally 1/2 hour before appointment) - the most awesome anti-nausea medication in the world.
    Aloxi (IV premeds)
    Dexamethosone - (IV premeds)
    3 Tylenol (orally)
    1 Benadryl (orally)

    With all this onboard before I start the herceptin, I have yet to have any problems either during or after treatment except for a little fatigue. I have to take the Emend the following morning, but gladly do to insure that I won't have any ill effects.

    April
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  • daisybell
    daisybell Member Posts: 58
    edited May 2007
    Had nasal bleeding on taxol/herceptin but it stopped after the taxol was over. Maybe a little runny nose. No other obvious side effects, but MUGA went from 73% to 60%. Can't feel it though.

    Sue
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  • myishaforteena
    myishaforteena Member Posts: 16
    edited June 2007
    Hi Everyone,
    I read and post for my mom Teena, who was diagnosed in July, stage one, er/pr/her2 positive. She did rads and chemo and is on finishing with herceptin now. She wonders if any of you have burning when you urinate? She burned on an off during chemo, but has been surprised to keep burning three months after chemo. Has anyone else had this expeince with herceptin?
    Myisha
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  • daisybell
    daisybell Member Posts: 58
    edited June 2007

    No, has she been checked for a urinary tract infection?

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  • 3546ali
    3546ali Member Posts: 1
    edited June 2007

    Hello there, I finished a year of Herceptin infusions in February and had exactly the same symtoms as you describe, very stiff hands and fingers and I couldn't form a tight fist. Even though my last infusion was almost 4 months ago I am still left with some joint pain in my wrists and elbows and flakey nails, but I suppose a small price to pay as it is 3 years since diagnosis and so far so good!

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  • Dnicoletto
    Dnicoletto Member Posts: 76
    edited June 2007
    I have found that the "big weekends" in my life seem to always occur on my Herceptin wknd. It has never slowed me down at all. I have done out of town trips, and company at the house. Other than occasional sniffles I feel great.

    I blame all of the nail issues and muscle aches on the taxol that I finished six months ago. My nails are still growing out from that time and seriously, ladies, that taxol kicked my ass. It will be nice to be done with the infusions, so I can get my reconstruction done, but I would trade another 4 years of Herceptin if I could lose the Arimidex any day. I HATE the Arimidex.

    Bottom line: Herceptin is a walk in the park.

    ~Dorie
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  • marylourn
    marylourn Member Posts: 4
    edited July 2007

    I have been experiencing the stiffness in my hands also and my fingers lock and I cant make a fist either. I have been on the herceptin since Oct,'06. I thought it was from the arimidex that I have been on for 7 months. Do you take arimidex as well as the herceptin? Has anything helped for your hands? My nails turned brown and even tho that has mostly grown out, my nails still break off which they never did before. I think the brown was from the A/C tx.

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  • Denny123
    Denny123 Member Posts: 1,886
    edited July 2007
    I have been on Herceptin for 3 1/2 years and am happy to say that I have no ill effects at all. I used to have some vague nausea the evening of treatment which I get every 3 weeks, but now I am getting the infusion for 45 minutes instead of 30 minutes and that really helps. I also find that I should eat carbs after my treatment and have virtually no nausea now.
    My MUGA's, which I have now replaced with Echo's have been around 57-very good for me.
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  • tooyoungtohavebc
    tooyoungtohavebc Member Posts: 779
    edited July 2007

    I did herceptin for a year with minimal effects. Little nausea and I had some nose issues...dry and bloody, but overall it was WAY easier than chemo especially evil taxotere.

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited July 2007

    Wow, it is great to come back after my initial herceptin treatment April 28 and see how far I have come! I have my first MUGA August 3. It has been hard to figure out whether my symptoms are from the herceptin tx. or from other health issues, but I note I have been nauseous after tx., also the chills big time for several days. My temp drops to 94-95. I had my last tx. on Friday, here it is Sunday and I still get the chills and low body temp. Kinda suspected it was herceptin. The doc just comes by when I am having tx. and asks, "How are you?" writes down something and off he goes. The nurses seem more informative! smile. No bloody or dry nose, but then I am on oxygen and that causes dry nose. Overall, however, I have had more energy since the mastecomy than over the past 12 years! -lori c.

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  • talbrig13
    talbrig13 Member Posts: 488
    edited August 2007

    I am having Herceptin every 3 weeks...have constantly runny nose. nausea and diarrhea. The diarrhea goes away after a few days, but the queasy feeling stays with me. And I have been lightheaded at times. Rad techs say it is not from rads...must be Herceptin...What do you all think?

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