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Herceptin - Quick Side Effects Poll

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Comments

  • anitakarim
    anitakarim Member Posts: 3
    edited December 2010

    Hi Everyone, it has been a while since I posted on here but I  have some good news for you all that I thought I would share.  My last herceptin was June 28,2010 and like all of you here couldn't wait to find out if and when my side effects (muscle cramps and ache, swollen joints and ache, drippy/crusty/dry/painful nose, fatigue, twitchy eyes, acid indigestion - to name a few) would disappear.  Well, now and for the most part they have - only lingering ones as some muscle cramping, occassional acid indigestion and on cold mornings ankle joints ache).  I hope this gives some of you something to look forward to as you progress in your treatment.  Take care!

  • michcon
    michcon Member Posts: 121
    edited January 2011

    Hi ladies,

    Glad I found this board. I had my first Herceptin only last week and I was hoping it would be a breeze, but I've had the achey feeling ever since the day after. I also had a flushed face and rash on my arms right after infusion. That happened to me during chemo, but the nurses and doc said it was the steroids. Well, we now know it's the Herceptin. Doc didn't seem concerned with it and me either as long as it doesn't hurt me. The achey is awful though. Is this what I have to deal with until September? I don't know how we all do it.  

  • omaz
    omaz Member Posts: 4,218
    edited January 2011
    michcon - On the day of the infusion I also got flushed and felt sick to my stomach.  The next day I had diarrhea.  Then the next day felt ok again.  Maybe it gets better with time.
  • TMarina
    TMarina Member Posts: 297
    edited January 2011

    Michcon--i had some reactions (nausea, fatigue) after the first H only infusion, and found it was from the chemo still in my system.  The next few infusions I just felt really tired after, and now (I've had 12 total , so far) just a little fatigue.  Hopefully your reactions will also get better with time!  If the pain gets really bad, and otc meds don't help, ask your onc for something stronger.  i had to take percocet with Taxol because the pain was so bad.  You shouldn't have to suffer!

    Hope it gets better for you!

  • Stephy1
    Stephy1 Member Posts: 5
    edited January 2011

    I started my Herceptin in July 2010, for a start I didn't attribute the aches etc with the Herceptin as my nurse specialist said they might still be down the taxatire, chemo drug.  It was only after me mentioning over and over again to her that the aches were getting worse did she tell me that this was actually down to the herceptin, and that figures were just emerging that more and more woman were suffering this way.  I did at the start think it was all in my head and I was willing myself to be this way. Well I'm happy to say that I'm not going insane and the pain is all in my joints and muscles.  Only another 8 treatments to go !

  • omaz
    omaz Member Posts: 4,218
    edited January 2011
    stephy - I have the aches too when I move - if sitting at the computer and then get up it is achy/hurting/stiff all over.  I had TCH and now just doing the H part until next Aug.
  • lago
    lago Member Posts: 11,653
    edited January 2011
    Omaz, me too! I really hope it's just the taxotere. I have one more tx left of chemo. This would be horrible if I have to have this through the rest of Herceptin. It does get worse and worse.
  • omaz
    omaz Member Posts: 4,218
    edited January 2011
    lago - I am 7 weeks post final TC part of TCH and still feel this way.  I was wondering if it was related to the decreased estrogen of chemopause too??  So difficult to sort these things out!  How are your fingers and especially your thumb doing?
  • lago
    lago Member Posts: 11,653
    edited January 2011

    Yes I was wondering that too. My thumb still smells a bit and today is my last day on the antibiotics. I think I will call the doctor just in case he wants me to go on a different antibiotic or be on this one a bit longer. Thanks for asking.

    I was told that it can take 2+ months to start to feel better from this chemo crap

    So how are you doing otherwise?

  • TMarina
    TMarina Member Posts: 297
    edited January 2011

    Hi Ladies!  Just thought I'd report here on my heart function issues I am having due to Herceptin.  My heart function had decreased to 51 (from 65 last June), and my onc put me on a bp med called Enalapril (even though I don't have high bp--it's supposed to help with heart function).  I'm happy to say that my last MUGA (a week ago) showed heart function had increased to 56.  I've had no SE from the med, so onc wants me to stay on it as it seems to be working!  I'm glad I haven't had to skip any Herceptin infusions.  My last one will be Aug.10th.

    I am getting over the chemo and rads fatigue...and feeling better each day!  The H still makes me a little tired though, for a day or so.

  • fichtinger
    fichtinger Member Posts: 1
    edited January 2011

    After Chemo and Radiotherapy, my Onc advised me to take Herceptin for 1 year. This was in April 2009. During the first infusion I went into toxic shock. I was stabilized immediately and told that I´m allergic to this drug. After a lot of respitory problems over the following weeks, I was told that the Herceptin had damaged my heart quite badly, but with the appropriate treatment my heart would repair itself. It is now over a year and a half and although my heart condition has improved, I was wondering if there is someone out there with a similar problem and how long did it take for their heart to recuperate. Thanks for any feedback.

  • Rooster-wBC
    Rooster-wBC Member Posts: 1
    edited January 2011

    This is an important topic to me. Thank you to all of you who have shared. I am still in Phase I Chemotherapy, so I am only going to read for now. The information being posted is helpful and appreciated.

  • omaz
    omaz Member Posts: 4,218
    edited January 2011
    Welcome Rooster-wBC!  What chemo are you on?
  • stlcardsfan
    stlcardsfan Member Posts: 227
    edited January 2011

    My last Herceptin was 12/15/10, so just over 1 month out and my knees are no longer achy. I am in surgical menopause so I was curious if they aches would go away after my last H. It seems for me that it was the H causing the aches. I did find with moderate exercise like treadmill walking, seemed to help during the Herceptin treatments and the achy feeling. My finger joints still a little stiff, but they seem to be getting better the farther I get out from the last H.

  • omaz
    omaz Member Posts: 4,218
    edited January 2011
    stlcardsfan - Good to know!  I will look forward to that because right now things are definitely achy.
  • rosemary-b
    rosemary-b Member Posts: 57
    edited January 2011

    fichtinger

    It took 2 years for my heart damage from herceptin to heal. My onc was hopeful even at that point but my cardiologists- I fired one- thought it should be better in about 9 months. One of the 4 heart drugs they put me on (my LVEF was 15-20) gave me a year of uncontrolled asthma until I had had enough and told the dr to take me off it. He didn't. I fired him went to a pulmonolgist who also work with people in ICU who are there because their meds have them messed up. She took me off it and I believe that once the oxygen supply to my heart was no longer comprmised it could heal.I was also talked into an implanted defibbralator when it hadn't healed at 9 mons. I think that's the most expensive mistake I've ever made.

    Anywho...

    That is just a long way to say hang in there

  • omaz
    omaz Member Posts: 4,218
    edited January 2011
    Question - I have some numbness from taxotere that was stable at 9 weeks out from chemo.  I just had a herceptin infusion and all my numbness got worse.  Has anyone had this happen to them?  Thx
  • Smile_On
    Smile_On Member Posts: 66
    edited January 2011

    When I told my onc about additional numbness I've been experiencing he said the colder weather makes neuropathy worse and that is why I notice it more.  He assured me that it was from the Taxotere not Herceptin.  He told me that the numbness should ease in the spring.  I definitely hope so...somedays I feel like I'm 4 years old again trying to figure out how to button shirts.

  • omaz
    omaz Member Posts: 4,218
    edited January 2011
    Thanks Smile_on - I hope so too!
  • bbryant04
    bbryant04 Member Posts: 33
    edited January 2011

    Hi ladies - this is my first post on this thread...3 weeks past last TCH - Monday will be 2nd Herceptin only.  I was hoping my nasal congestion and nosebleeds were Taxotere related, but apparently not.  They definitely have NOT eased up any.  I have something new going on, wondering if anyone has experienced it...my fingers on both hands have become red and kinda itchy-tingley.  I think it started this morning (don't remember noticing it last night at all).  It's been that way all day today.  I have done nothing different - no new anything that I might have put my hands in, no new foods, etc...absolutely nothing different.  Could this possibly be a Herceptin thing?  Any comments?

  • KAJDerby
    KAJDerby Member Posts: 32
    edited January 2011

    I have a terrible time with itching and tingling.  It usually happens when I am over heated.  I asked my doctor about it and they told me it was a small reaction to the herceptin.  I must say, it doesn't stay. Only comes and go as I get hot, like taking a hot shower really makes me itch!  It is the release of histamine.  Don't know if this is anything like what you are experiencing.

  • Lilah
    Lilah Member Posts: 2,631
    edited January 2011

    I did not have this problem with Herceptin but then I take 10 mg of Claritin (for allergies) every day.  You might ask your doctor if taking Claritin will help with your (what sounds like allergic) reaction.

  • Marl5900
    Marl5900 Member Posts: 11
    edited February 2011

    to Grace: I now take benadryl (25mg( the day and night (50mg)  of the infusion.  It helps a lot.  I had shingles twice when I was doing TCH until I took an anti viral drug everyday.  It was supposed to become unecessary with Herceptin only but after a third "shingles attack" I am back on the drug.  Skin rashes continue but are under control with anti allergy drugs!    

  • VickyC10
    VickyC10 Member Posts: 11
    edited February 2011

    Hi All, It seems that we all react differently. I finished Taxol (Paclitaxel) 5 months ago and am now only having 3 weekly Herceptin till June. I still have numbness and tingling in my fingers and feet even though it is summer here in Australia. I have been encouraged to read that the feeling of being an old woman may go when I finish the Herceptin. Thanks for sharing all your experiences.

  • Stephy1
    Stephy1 Member Posts: 5
    edited February 2011

    Omaz I know what you mean.  I completely lock up if I've been sitting for a period of time, when I get up I move like a little old lady - apologies to little old ladies.  My fingers seem to be the worst affected area, I lose grip in my hands and am so fed of dropping things.  When I wake up in the morning my shoulders hurt like hell, my legs don't want to work and fingers and hands hurt.  But the way I look at it is - I'm alive and can put up with the aches and pains for a few more months !  Oh and sorry can't remember who wrote that they had been told it takes 2 months for the chemo to be out of your system, I was told 6 months. Has anyone's temper got worse since they have been on chemo and herceptin ?

  • Lilah
    Lilah Member Posts: 2,631
    edited February 2011

    Stephy -- I found that about 2 months after I finished Herceptin, most of that achy joint feeling went away.  My fingers are still slightly stiff as is one knee (which has some mild arthritis now)... but you will feel much better soon!

  • janette1958
    janette1958 Member Posts: 1
    edited February 2011

    Hi I finished my herceptin in Aug of 2010 and I have the aches and pains.  Just curious if any one has had a runny nose and pleghm in there throat.

  • Lilah
    Lilah Member Posts: 2,631
    edited February 2011

    If joint pain remains chronic long after finishing Herceptin it's worth having your thyroid levels checked (it's just a blood test). 

  • ishobie
    ishobie Member Posts: 10
    edited February 2011

    I notice my nails do not grow and I lost a nail on my toe today.  I have been on herceptin only since September.  I get that rash often on my chest n stomach and usually take a benadryl and it goes away.  Fatigue usually right after the treatment for one or two days.  A little bit of indigestion. Nothing compared to the chemo, so not complaining.!!!

  • lago
    lago Member Posts: 11,653
    edited February 2011
    ishobie I am willing to bet the nail falling off might still be residual from chemo. When did you stop chemo? Some of my nails fell off during chemo. I expect more to fall off too. BTW my nails have continued to grow on THC although a bit slower.

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