Herceptin - Quick Side Effects Poll

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  • TMarina
    TMarina Member Posts: 692
    edited August 2011

    Thanks Kay!

    DeeDee--some of your SEs don't sound like typical Herceptin SEs, but that doesn't mean the H isn't causing them.  It sounds like you may have hand-foot syndrome which is a SE of some chemos.  The dry cough could be nothing, or it could be heart related (I just saw my onc and one of the questions he asked was if I had a dry cough).  You should call and talk to your onc.'s nurse.

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  • Nikisezz
    Nikisezz Member Posts: 14
    edited August 2011

    Hey all: I have been reading all the posts and was able to connect with all the SE's everyone else complains about - as well as a depression that sank me for ten days after my three week infusion. I just went to weekly infusions and am thrilled with tht decision. SE's are much less or disappeared altogether, especially those crappy "blues". It's tough enough staying positive without the chemicals darkening my mind.



    So my suggestion is that if the side effects become intolerable on the three week schedule, do consider weekly. It's a quick visit and may help. It, thankfully, did for me at least. Good luck all.

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  • DeeDee2
    DeeDee2 Member Posts: 82
    edited August 2011

    Thanks TMarina,

    I spoke with my onc about the cough he said it was probably allergies. I've never had allergies before so i was sure it had something to do with either chemo or herceptin.

    The small blisters on my hands & feet may also be left over SEs from chemo since i've had the problem all along, but i have also been taking herceptin from the start.

    Have a good day all.

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  • Ado
    Ado Member Posts: 89
    edited August 2011

    Since my final Herceptin I have been experiencing the SE's I had while on it at intervals of three weeks. Strange isn't it  I have the fatigue on and off all of the time but definitely get the achy joints and runny nose and sneezing and feel generally more tired every three weeks. I counted it up in my diary and it is almost to the day, I also get the jumpy legs but more noticeable is the twitching especially when going off to sleep. I can also drop off in a second and apparently be snoring loudly very quickly thereafter. I also find I cannot exercise as much as I am more tired than usual. I had no trouble with my nails during the treatment but now they are so brittle they hardly exist at all.

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  • ander
    ander Member Posts: 2
    edited August 2011

    I feel beat up by all the drugs.  Same protocol as most of you - dose dense chemotherapy four rounds of Adriamycin and Cytoxan, four rounds of Taxol and Herceptin, and now Herceptin and Zometa.  Yuck.  My oncologist counts Herceptin by the dose (I opted for triple doses at a time) so my last infusion was dose 29,30,31 and I should be done next February after 54 doses.  The side effects are tough especially knowing it will last another six months.  Does anyone else have the blurry vision and headache during the infusion?  I can't continue reading my book after the first ten minutes (but I always optimistically bring a book!).  Then by the time I get home the runny nose kicks in and the muscular aches and pains and nausea.  I still have neuropathy but it's much, much better than during the Taxol.  Brittle fingernails and toenails but that doesn't really describe it - I have holes in a couple of nails (very strange) and bumps and ridges and rips and tears.  I think of my nails as the barometer of the drugs getting out of my system.  My hair is about an inch long now but barely grows. My fingernails grow at a pretty normal rate but I still don't have to shave my legs - go figure!  What's the percentage of woman that are on Herceptin? 

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  • Omaz
    Omaz Member Posts: 5,497
    edited August 2011
    ander - How fast is your herceptin infusion?  Do they give you any premeds?  Welcome and Congratulations on finishing chemo!
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  • ander
    ander Member Posts: 2
    edited August 2011

    Omaz - My infusions are two hours and the only premeds I take are on my own - heard from other women during the chemotherapy to try Claritin and I've kept that up.  Generally when I get home I take a couple of Advil for the achy feeling and then count the hours until I can go to bed and try to sleep it off.  I sometimes take an Ativan to take the edge off.  I also have a lovely rash all over my torso and legs from the Herceptin that looks like spotty Chicken Pox.  My oncologist said she's never seen that as a side effect and sent me to an Internist/Dermatologist who took one look and said of course it was a side effect from the Herceptin (something like 20% of patients get it) and skin rashes are reported in the dermo literature but likely not as much in the oncology literature. Hey, and thanks for the congrats on finishing chemo - it's much more poignant coming from someone who understands what they are congratulating me on.  

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  • Omaz
    Omaz Member Posts: 5,497
    edited August 2011
    ander - Well maybe as some times goes by since the end of chemo things will start to calm down a bit. 
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  • Omaz
    Omaz Member Posts: 5,497
    edited August 2011

    I found a very interesting article if anyone is interested in the nitty-gritty details of their HER2 FISH report and herceptin treatment for different levels of positivity.  This is the LINK  Their conclusion is that herceptin is equally effective for all levels for HER2 positivity, which is what my onc also said.

    Here is the title: Disease-Free Survival According to Degree of HER2 Amplification for Patients Treated With Adjuvant Chemotherapy With or Without 1 Year of Trastuzumab: The HERA Trial

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  • ReadingMama
    ReadingMama Member Posts: 573
    edited August 2011

    just checking in.  Nice to see you Ado, glad your vacation was good. 

    Congrats TMarina on finishing and Omaz, good luck on your last H this week!!! 

    I had #13 last week and am getting a fair bit of headaches since then, which is not so unusual for the first week after for me.  I did alot of walking this week and my aches and pains weren't so bad, still feel it mostly in my finger joints it seems.

    One more week of work, then vacation for a week, I can't wait.  Summer is going by so fast.  Next H is day after Labor Day and that will be 3 month check-up with MO also.  Had Echo last week and that was fine, so I think that will be my last.  I have my 6 month follow up with Breast Surgeon this week and then I think I'm probably done with her?  Not sure, but I think then its just the MO, which it will be nice to limit the doctors visits!

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  • Omaz
    Omaz Member Posts: 5,497
    edited August 2011
    Thanks ReadingMama!  Can't believe it's been a year!!  It seemed like FOREVER when I first started.
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  • frankh
    frankh Member Posts: 131
    edited August 2011

     Ado glad you enjoyed your holiday. I'm trying to get something organised for the latter half of September. My wife really fancies a cruise but I must say I'm not that interested. Although any one to whom I have spoken who has been on a cruise always says the same thing - that it is very enjoyable.

    I am getting home treatment which started with the last dose and am getting dose # 12 this Thursday. It's all very civilised having a nurse come to your home. I don't understand why I'm on the home treatment plan as I live not very far away from the hospital and am mobile but I'm not complaining.

    With regards to SEs I must say that I'm not having anywhere near the SEs that some of you are having though Yes to the brittle nails and runny nose. I would be a bit nasally especialy at this time of year but at the moment it's much worse. The lining of my nose has swollen up and my nose is basically blocked at present. It's like having a tiny balloon in each nostril. Any one suffering similar ? Also am having a very slight (and I stress slight) problem with a few mouth ulcers 

    take care all

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  • sweetbean
    sweetbean Member Posts: 1,931
    edited August 2011

    OK, I bruise EVERYWHERE!  And my hair growth is super slow.  I finished chemo on March 22, so I am 22 weeks PFC, but I still have some thin spots on top.  It is filling in, but sl-o-o-o-o-o-w-l-y.  Erg.  I just want full coverage.  Also, my nose gets super stuffy.  

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  • Omaz
    Omaz Member Posts: 5,497
    edited August 2011

    Last herceptin DONE!!!

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  • PearlGirl
    PearlGirl Member Posts: 549
    edited August 2011

    Omaz...HOORAY! Fantastic news! Congratulations on crossing the finish line! Bon

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  • ellenquilt
    ellenquilt Member Posts: 172
    edited August 2011

    Omaz: Congratulations!

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  • Moderators
    Moderators Member Posts: 25,912
    edited August 2011

    Congrats Omaz!!

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  • Omaz
    Omaz Member Posts: 5,497
    edited August 2011
    Thanks Bon, ellenquilt and Moderators  - I appreciate it!!  I got a little teary eyed I must say.
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  • sweetbean
    sweetbean Member Posts: 1,931
    edited August 2011

    Whoot!  Congratulations, Omaz!

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  • Omaz
    Omaz Member Posts: 5,497
    edited August 2011
    Thanks sweetbean!!
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  • PearlGirl
    PearlGirl Member Posts: 549
    edited August 2011

    Omaz, have a little tear and then a great huge smile. You're done! It's just wonderful.

    Hugs to you. Bon

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  • starella
    starella Member Posts: 159
    edited August 2011

    OMAZ, you are done, congrats!!!! i have two more to go

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  • lilylady
    lilylady Member Posts: 1,079
    edited August 2011

    Omaz-congrats on finishing up!! You were someone I have followed since I got DXed in Feb. The group you were in with were so knowledgable about the whole TCH thing. You are all generous and sharing and encouraging to those who have come after you.

       Another big happy dance for you!!!

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  • Omaz
    Omaz Member Posts: 5,497
    edited August 2011
    starella and Lilylady and Bon - Thanks so much!!  It's a difficult road but doing it together REALLY HELPS!!!!  I don't know what I would have done if I couldn't have come here to talk.  It has made such a difference for me.  (((hugs))))
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  • TMarina
    TMarina Member Posts: 692
    edited August 2011

    Congratualtions Omaz!!!  You did it!!!  It's a WONDERFUL feeling to be DONE!  Laughing

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  • achpurple
    achpurple Member Posts: 290
    edited August 2011

    Yay Omaz!  You Go Girl!

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  • marjie
    marjie Member Posts: 1,134
    edited August 2011
    Omaz - that's fantastic!!!  I don't mind saying that I am a little jealous - but oh, it must feel SOOO good!
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  • Omaz
    Omaz Member Posts: 5,497
    edited August 2011

    Thanks achpurple!

    marjie - How much longer do you have?

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  • ReadingMama
    ReadingMama Member Posts: 573
    edited August 2011

    Omaz, congrats!!!  13 down for me, I have 4 or 5 left (not sure if I am getting 17 or 18), should be finished end of November/early Dec. 

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  • Kay_G
    Kay_G Member Posts: 3,345
    edited August 2011

    Congrats Omaz! Thanks for all the info you've given on this and other threads.  Hope you'll keep posting here.

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