Herceptin - Quick Side Effects Poll

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Comments

  • Kay_G
    Kay_G Member Posts: 1,914
    edited October 2011

    I had an infection from a clogged duct in the same spot I got cancer too.  Hmmmmm....

  • omaz
    omaz Member Posts: 4,218
    edited October 2011

    I also had clogged duct. Perhaps a combination of injury/damage -> inflammation -> poor resolution due to poor circulation (I read that the breast has poor circulation somewhere)  makes the breast cells vulnerable or maybe the injury is to already vulnerable cells and then they go over the edge.

  • marjie
    marjie Member Posts: 365
    edited October 2011

    I see a cardiologist regularly and have monthly ECHO's.  Occasionally after tx I will get heart palpitations and some shortness of breath but it seems to clear itself up in a week or so.  My cardiologist told me to watch for increased fatigue especially.

  • Joya
    Joya Member Posts: 4
    edited October 2011

    Hmmm - yes this is getting really interesting. Maybe there is some truth in my Mum's theory that an injury to the breast could be the trigger for the cancer cells to start growing. Certainly more and more of you seem to be remembering an incident which could be the cause.

     I have to say too that I watched the DVD Living Proof last night and have to admit it was awesome. How sad though that it had to be such a fight for funds in the beginning........ 

  • marjie
    marjie Member Posts: 365
    edited October 2011

    There could be a million things that trigger cancer cells....I wouldn't be surprised if an injury to the breast might be a trigger.  For me, I have never had anything happen to my breasts so who knows.  I do remember when I was young - just at the age where you are starting to develop - all the boys would chase the girls around and try to give us painful "titty twisters".....sure hope that has stopped!!

    I have yet to see Living Proof but I definitely want to.

  • Slainte
    Slainte Member Posts: 55
    edited October 2011

    Marjie,



    What caused your Onc to refer you to a cardiologist? Did you say your MUGAs were all normal but you still had cardiac symptoms? My docs seem to rely entirely on the MUGA scan. What symptoms were yiou getting.



    I am getting 17 treatments total. A year ago I would have worried that I am getting one less than some people, after a year of all the side effects I was more than happy to be in the group that gets 17 lol. :)



    Christine

  • marjie
    marjie Member Posts: 365
    edited October 2011

    Hi Christine - long time no talk!

    One of my MUGA's came back showing some LV enlargement but only a slight reduction in ejection fraction so just to be on the safe side my onc referred me to the cardiologist.  During the heavy chemo I did have a lot of palpitations with each tx.

    Moving forward, the cardiologist who has quite a bit of experience with chemo patients, prefers me to have the monthly ECHO's instead of the MUGA's.  I do have days where I have shortness of breath and some heaviness and/or palpitations but it's not too bad.  He said I should watch and report any excess fatigue as well.  So far so good....

  • Slainte
    Slainte Member Posts: 55
    edited October 2011

    Marjie,



    Well we are finially almost finished this year and a bit of our life! How is work going? Did you go back full time? I am working two to three days a week and find that more than enough (except for the smaller pay cheque lol).



    Christine

  • marjie
    marjie Member Posts: 365
    edited October 2011

    Work is tiring for sure - I'm back full time and it will take some adjusting but I'm glad to be getting back to "normal"...whatever that is!

  • puce
    puce Member Posts: 26
    edited October 2011

    I seem to be short of breath too.  Also have a cough once in a while.  What is this a sign of?  Onc ordered a chest CT and they didn't see anything.  I'm having a MUGA in 2 weeks.  It's scary.  Did 4 A/C and am on week 10 of weekly Taxol/Herceptin.

  • Kay_G
    Kay_G Member Posts: 1,914
    edited October 2011

    Puce, I developed pnuemonitis from Taxol.  Symptoms were high fever, cough, fast heart rate, shortness of breath.  It is a rare side effect from Taxol.  They were probably ruling out that and pnuemonia with the CT scan.  It got worse quickly so if yours isn't getting worse pretty quickly, it doesn't sound like what I had.  Also it should have shown on the CT scan,  It apparently looks like broken glass.  Unless it was too early to see that yet.  I don't know, but if it gets worse, keep it in mind.

  • starella
    starella Member Posts: 101
    edited October 2011
  • lynbell73
    lynbell73 Member Posts: 2
    edited October 2011

    Just finished my Herceptin treatments (every 3 wks for a year).  I am also taking Exemestane (generic aromasin). Have experienced bad insomnia, drippy nose and coughing. Also some stiffness in fingers.  Reduced appetite, have lost 20 pounds but weight has stabilized and my doc never seemed worried as the weight lost was gradual.  I was actually at my goal weight for my son's wedding Smile !

  • omaz
    omaz Member Posts: 4,218
    edited October 2011
    lynbell - Congratulations on finishing the herceptin!!!
  • nmoss1000
    nmoss1000 Member Posts: 324
    edited October 2011
    Ton Lee sorry to hear about all,of your SE, they sound exactly like mine and I am sure it's from the Herceptin. One thing that did help with rapid heartbeat was a slower drip. The joint pain and foot cramps are the worst . I move like I'm a 100. Hang in there! Hugs to you

    Lynnbell, I start aromisin today, groan at the insomnia I have that now but yay to the weight loss.how did this happen for you? Lack of appetite? Magic? Just want to know what SE to expect, I was on Femara for a week and was more nauseous than chemo. A little nervous about trying an AI again, besides nausea my hair started to fall out on Femera.thanks for any info you an share.

  • frankh
    frankh Member Posts: 123
    edited October 2011

    Hello Ladies

    I was wondering if any of you had experienced a similar SE as myself. I got dose #14 of Herceptin on 6 Oct. Over this past while (some months) I have had a small swelling on my left index finger, at the last joint just before the finger nail. Over this past few weeks it has started to increase in size. Seems like a fluid in it which then solidifys. My GP took blood sample and the results all came back normal except for one which was slightly high and is an indication of Gout ! ! (obviously from my high lifestyle lol) However he said that if it was Gout I should be experiencing pain which I am not. He is sending result onto my Onc for comment. GP also organised an X-Ray to check if there is any bone damage - haven't had the results of that yet. 

    I have heard of some people experiencing pain in their joints as a SE of the Herceptin. Would be interested to hear if any of you have had similar experience.

    take care all  

    Frank

  • Kay_G
    Kay_G Member Posts: 1,914
    edited October 2011

    nmoss1000, I said I feel like I'm moving like I'm 90 from this joint stuff from Herceptin.  I guess I'm doing a little better than you.  Wink

    Frank, I have swollen fingers, but think it's from lymphedema, not Herceptin, but who knows.

  • marjie
    marjie Member Posts: 365
    edited October 2011

    The joint pain does lessen - I thought it would never go away.  It's still there in my feet and hands, but not as bad as it was.

  • TMarina
    TMarina Member Posts: 297
    edited October 2011
    Congratulations lynbell!!  It feels SO GOOD to be done!  Laughing
  • ReadingMama
    ReadingMama Member Posts: 338
    edited October 2011

    lynbell, congrats on being done.  Looking forward to it myself!!!

  • marjie
    marjie Member Posts: 365
    edited October 2011

    I have four more to go.....looking forward to that last one as well!

  • Slainte
    Slainte Member Posts: 55
    edited October 2011

    Congrats lynbell!  I have two more left.  Yay!

    Marjie- my joint pain has improved as well, mostly just hands, feet and ankles.  I am starting to wonder if it is long lasting side efects from Taxol or herceptin.  I guess we may never know.  I'm just glad it is getting better. Smile

    Christine 

  • omaz
    omaz Member Posts: 4,218
    edited October 2011

    I am 8 weeks out from my last infusion and my feet still hurt when I first walk on them.  Is it just

    a) loss of estrogen

    b) getting older

    c) still herceptin SE

    d) all of the above

    Smile

  • marjie
    marjie Member Posts: 365
    edited October 2011

    Christine - I think it's a little bit of left over SE's from taxotere as well as the Herceptin.  But yes, I'm just glad it's not as bad as it was although it can still be frustrating.   My onc said I could expect some SE's from the sudden change in hormone levels what with being thrown into instant menopause.  She even suggested that yes, I was also getting older but I think that it's just a little too coincidental that one year ago I was absolutely fine then POW, old age aches and pains just happen to show up after chemo?  Omaz - I pick a & c Tongue out

    I have a lot of problems with my shoulder from the radiation too...ugh!

  • serenitywisdom
    serenitywisdom Member Posts: 109
    edited October 2011

    Hi Frank and others,

    Re: joint pain,  I had my last TCH July 9 and am now just getting herceptin every 3 weeks.  My hips and my little finger continue to be stiff.  In fact I have to physically move my little finger whch seems to freeze  and other fingers with my other hand to keep them limber.  If this is arthritis then its wierd because my other hand is not  like this.  I am not sure symptoms are due to arthritis or if herceptin is aggravating or predisposing me to arthritic joint pain  In any case,  what can one do about it?  What have people tried?  I just recently started taking L carnitine for neuropathy in my feet, silica for breaking nails, and CoQ10 for the heart changes I am experiencing (seen on MUGA)  I still have 4.5 months to go and hope things will not get worse?  Ideas welcomed.  Has anyone tried heat on the joints? 

  • nmoss1000
    nmoss1000 Member Posts: 324
    edited October 2011

    Omaz I am laughing at your list! I'm going with a combo of A & C taking 1200 MG of Calcium a day has helped my hips and feet a bit.

  • Hindsfeet
    Hindsfeet Member Posts: 675
    edited December 2011
  • Kay_G
    Kay_G Member Posts: 1,914
    edited October 2011

    Told my onc about the joint pain yesterday.  It has to be from Herceptin, I haven't started Tamoxifin yet.  Was only #8 yesterday.  She wasn;t sure what to do, asked if I wanted some pain meds, but if advil isn't helping it, I don't think another pain med would either.  She thinks I may have to quit the Tamoxifin.  Decided to take it and see what happens with this one. 

  • nmoss1000
    nmoss1000 Member Posts: 324
    edited October 2011

    It's from the Herceptin, I am not on Tamoxifen and just started my AI (aromisin) on Monday but the joint pain as been for months.

  • Kay_G
    Kay_G Member Posts: 1,914
    edited October 2011

    Did the onc suggest you quit Herceptin because of it?  I wasn't sure if she was suggesting that or trying to get me to "medicate".  I really don't want to take any strong pain meds, too many side effects, plus can I drive if I take them?  I think she got worried when I said I had to crawl up the steps because of the joint pain in the knees.  I did, but that was only a couple of days of the 21 day cycle.  I don't know what to do.  See how this one goes.