Herceptin is Nothing

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LoriR
LoriR Member Posts: 131
edited June 2014 in HER2+ (Positive) Breast Cancer

-Wrong - Herceptin is not nothing!  Ugh I need to vent - I am on treament #16 today with only 2 more to go and my friends and family act as if it is nothing!  I had 4 TCH chemos and everyone was there and asking if I needed anything or needed somone to go with me.  Now that it is just Herceptin I have been going by myself for my infusions.  They take 4-5 hours instead of the normal 2-3 because I had an allergic reaction the first time I went.  I started going into anphilactic(I am sure I spelled that wrong!) shock.  My onc did a re-challenge the next week and added more steriods and more pre-meds and a slower infusion rate.  It worked, so for treatments 2 thru now I have had all of this additional stuff added to my treatment.  My point here is that all of my family and friends act as if I was done with treatment when chemo ended.  They don't ask a single question - they don't see how infusions are going - My husband even left for work to today without even saying a word about the fact that I will be spending the day at the chemo center.  Did I mention that I work full time and my work acts like I am taking vacation every third Wednesday!  Am I being self centered here or should I be expecting a little more from those around me????

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  • Yogi70
    Yogi70 Member Posts: 654
    edited March 2010

    I understand exactly how you feel! I finished Herceptin in May of 2009. August 27, 2008 was my last day of chemo and I finished rads just before Thanksgiving of 08.  When I would tell people I was still in treatment they gave me a puzzled look. Just because my hair was growing back and I didn't have the chemo pallor and wasn't dragging around it was like "oh well, la de da".  Yes, even my husband was the same way. It is very irksome!! But I hated when people acted like I was an invalid (like with the chemo) so I was a little confused.  I think because chemo is such a big deal and when people hear cancer they think chemo and bald head. They don't see herceptin the same as chemo.

    No, you're not being self-centered. They just don't understand that we are still battling this very, real, very scary beast. They are ignorant to the fact that having cancer is still smacking you in the face every time you have an infusion. I don't mean ignorant in a bad way it's just that sometimes ignorance is bliss.

    Keep your head up, Lori. (((((hugs)))))

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  • LoriR
    LoriR Member Posts: 131
    edited March 2010

    Yogi70- THANK you so much for your post - I am really feeling alone in this lately.  When ever cancer comes up I find myself comforting other people that I am fine instead of them saying or doing anything for me.  You are so right - that people see hair on my head so "everything is ok" so need to check on her... My dx was Feb 2009 so I have beeing treating for 13 months!  that is a long freaking time and I am getting worn out by it all - but instead of support I get nothing.  My hubby gets frustrated when I forget which one saturday of the month he is working but I guess it is ok for HIM to forget this.  My friends have no clue when I come in to get my herceptin and my daughter is 17 so that should pretty much explain where her head is at :).  As for inlaws and sisters and brothers - no one calls or checks on me when I have.  I am just really tired of being the "good soilder" - thanks again

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  • chainsawz
    chainsawz Member Posts: 3,473
    edited April 2010

    I agree - herceptin is NOT without SE!!  I have been on it since 2008 and I can tell you there are definitely side effects.  I also had TCH (6 rounds) and it was definitely harder, but this stuff can knock us down a bit, too.  The day of my infusion I am exhausted, my muscles ache and have diarrhea.  Just because it doesn't make us bald doesn't mean it isn't hard on our bodies.  I think you have every right to be upset.  You are not alone and we know what you are feeling :> 

    I had a herceptin infusion yesterday and I mentioned how I feel after, and the nurses were really surprised....they didn't think anyone had SE from it.  I think we need to do a little public education...I sure let them know that was definitely not true and referred them to the herceptin web site where all the possible SE are listed.  Afterall, if it can effect your heart function how benign could it possibly be??  Not very!!   Take care....   lisa

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  • LoriR
    LoriR Member Posts: 131
    edited April 2010

    Lisa

    Thank you too for the post - as always whenever I am feeling alone with something in regards to this I can find support here.  Sometimes I feel like it is not even worth telling the onc anything anymore about what I feel like are SE.  I feel like he just blows them off and dismisses anything I have to say.  I really am to the point when he asks I just say everything is fine.  meanwhile my nose drips constantly, my digestive system is totally out of whack, my joints are killing me, my nails are a mess, my hair growth is 1/4 of what it probably should be, I run 20-25 miles a week and can not loose a pound,  my face looks like a moon pie for a couple of days after infusion, my ankles swell, my elbow hurts so bad I can't hold up my own weight on it - all of which he SAYS have nothing to do with herceptin.  Herceptin is not NOTHING - and I guess I just need to get that the only ones that "get it" are those of us that "get it".  I have to say that as much as I hate it I love it too because I know what amazing things it does to keep cancer at bay!!!!

    Good luck to you Lisa - how long are you on if for?

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  • chainsawz
    chainsawz Member Posts: 3,473
    edited April 2010

    LoriR - I have a laundry list of SE, but when I complain I get the feeling they think that it is better than cancer.  Well, it doesn't make it any easier!  I love this site because I don't feel like I am just making up these SE and sometimes I can find some good remedies to help :>  Anyway, you are not alone!!

    I will be on herceptin forever or until it doesn't work anymore - and so far it has done amazing things for me.  I take it along with tykerb now - good stuff but it definitely helps to vent about the things it does to our bodies!  

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  • janincanada
    janincanada Member Posts: 258
    edited April 2010

    Hang in there!  Herceptin is a powerful drug and it affects our bodies and mind.  I finished Herceptin last July and I'm still waiting for my nails to recover.  I found my family  with the exception of my partner Roger all considered everything OK once chemo was done.  Well, actually some figured everything was Ok afrter the mast.  I have two family members ....a sister in law and my mother who are survivors (Stage 1) and I must say they don't understand how the 15 month active treatment that I went through affects you. 

    The side effects are real, even if the medical community doesn't quite buy into it.  Why else do so many of us have runny noses for a year (mind you the lack of nose hair due to the Taxotere did make it worse).  The joint pain, runny nose, nails, joint pain are all things that I experienced.  Not pleasant, but well worth enduring to kill off more cancer cells. 

    My treatments took about 5 hours each time because my port was so wonky that it took them that long to get it too work.  In fact for the last two treatments we didn't use the port and I had it taken out as soon as I finished treatment.  No point in keeping it if it doesn't work.  I had to do everything but stand on my head to get it to work.

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  • talbrig13
    talbrig13 Member Posts: 488
    edited April 2010

    It is funny (not), my sister's dh is doing chemo for prostate cancer.   She called me and apologized that she was so unaware of what I had gone through!    Noone can know unless they are around you.  and who is there?   Your partner/spouse.   Although some men are clueless, I know mine noticed I was exhausted. But he never offerred to do the laundry or clean!

    You can only hang in there and know that WE have your back!

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  • Juli50
    Juli50 Member Posts: 859
    edited April 2010

    I was hospitalized 13 months ago with congestive heart failure after 11 weekly tx of Herceptin. My ejection fraction is still 40. Don't tell me Herceptin is nothing!

    Juli

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  • angicpa
    angicpa Member Posts: 67
    edited April 2010

    Well I'm glad I read this thread.  I've had all these side effects - aching joints, puffy body, etc.  I assumed it was leftover SE from Taxol, surgery, radiation. I feel like I've recovered from the surgery.  the radiation did tighten up one muscle (or ligament or whatever...I'm not sure what).  Not to discount any of what I read above.  I just was assuming how I felt physically was me still recovering from Taxol. 

    For what it's worth, since June '09 I had 4 A/C, 12 Taxol, about 4 months of daily lapatinib pills, single mastectomy, 28 radiations and 4 of 10 Herceptins so far.  But yes, except for the possible heart damage (big exception) I've been told Herceptin was relatively benign. It made sense to me that feeling whooped was  due to all that other stuff and not Herceptin. I've been waiting for June so I'd be six months out from Taxol and figured I'd feel better then. Now I'm going to assume if I still feel these SE that it IS Herceptin.  Thanks for the heads up everyone.

    ETA: Oh yeah, and what everyone posted about how "people think we're all better now and we should get over it"  because we have hair on our heads? phooey on those people.  They won't know until, God forbid, they've walked a mile in our shoes.

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