Herceptin - Quick Side Effects Poll

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  • Omaz
    Omaz Member Posts: 5,497
    edited May 2011
    isis - thanks.  I even called genentech to ask about the neuropathy and they poopood me too.On your liturature from the hospital is it just for herceptin alone?  or herceptin with chemo?  I agree about the docs attitudes about  complaining, but I still complain!
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  • isis818
    isis818 Member Posts: 25
    edited May 2011

    Omaz--it was strictly for Herceptin. I did not received any chemo with it. But as you know from my posts I was miserable on Herceptin especially as the treatments progressed. I was often too weak to get out of bed and some days I couldn't even shower. Today, about a month after my last one I feel not too bad. Weak, but I feel as though I am recovering my strength and that the dark mood is lifting. Unfortunately, my feet are not my own (numb-like). I'm not retail shopping yet--just getting groceries is enough for me. What about you?

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

    isis - I am glad to hear that you are starting to feel better.  I remember your posts.  I felt so bad for you because you felt so bad!  I hope you just keep getting stronger and neither of us ever sees this disease again!!

    I found some information about herceptin and neuropathy in the materials for the ALTTO trial.  I am going to bring them to the next appt with my onc.  Thanks

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  • frankh
    frankh Member Posts: 131
    edited May 2011

    Isis It is a biological fact that generally men are stronger than women but when it comes to enduring discomfort and pain women are way ahead in that department e.g pregnancy and childbirth. I had a full head of curlyish hair before I started chemo in 2008. I did not lose all my hair I just looked like a guy who had a short neat haircut.When i finished the chemo my hair eventually recovered. My last lot of chemo (24 weeks) ended in mid-February but my hair is still quite thin, straight and lifeless. My hands have vastly improved from the dry skin and hacks.My feet , whilst the hacks have healed, still have very dry and almost shinny skin. The skin sometimes feel really hot but don't sweat. My nose was runny during chemo and it has improved but is still a bit runny but as I said above it might be inherent in me. I did get a bit tired during the chemo but not  now that I'm finished it. I go walking a few times a week and would walk for about 1 and 1/2 hours at a reasonably brisk pace so tirdness is not a feature. I'm putting on a little bit of weight but I still  have not reached the weight I was before the tummy operation so it doesn't really worry me just yet. I can't really tell whether I am suffering any SEs from the Herceptin.

    Ado my first dose of H was given over 90 minutes and I had to be monitored for a few hours after but as I was also getting IV chemo that day I had to stay on in the hospital for several hours anyway. But now I am monitored for the 90 minutes after the IV infusion. I agre with you that the nurse could only treat about 3 patients in an 8 hour day excluding any travel time - just can't see the economies in that but i am going to agree to home treatment. Would you let me know the details of of your insurance. I have to pay a high premium even though I exclude any problems associated with cancer. To what part of Italy are you going? I love Italy have been several times. In June am going to Malta and hopefully Italy in September. Sorry to hear about your dogs Ado.

    take it easy all. 

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  • TMarina
    TMarina Member Posts: 692
    edited May 2011

    Thanks for the info on the neuropathy.  I have neuropathy from chemo over a year ago for colon cancer, then the Taxol last year made it worse, and now Herceptin?  Geez, I can't catch a break on that one!  It is not painful, unless I am on my feet for several hours.  Mostly just numb and tingly.  But I couldn't work this winter because I have to be outside for an hour (recess supervision at the elementary school) and it was too cold.  Not sure what I'm going to do next wimter.  The neuropathy improved a little, but now is holding steady and hasn't imporved in about 2-3 months.

    Just had another MUGA today.  I'm sure it will show that everything is good.  My numbers really improved when my onc put me on the bp med (and I don't have high blood pressure).  I never had any symptoms, thankfully the MUGA scan caught it before it got worse.  I had to have them more frequently for awhile, but now I'm back to every 3 months.  I have my next Herceptin infusion on Wed. I'll be tired for a few days after, and sometimes I also feel just generally yucky.  Can't wait until Aug.!

    Isis--glad you are feeling better!

    Frank--Thanks for sharing your experiences here--very interesting!

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  • frankh
    frankh Member Posts: 131
    edited May 2011

    Hello All

    Thought you might be interested in this. Below is a link to a article, from a newspaper called the Irish Independent, about Dr Slamon. It was written last November when he was here in Ireland. The link didn't transpose properly so you will have to cut and paste it. As I said above I went down to Dublin that night and heard him speak. It was a most interesting talk, given very much in non-medical terms and had the pleasure of chatting with him. 

    http://www.independent.ie/health/case-studies/meet-the-hero-doctor-whos-saved-thousands-of-women-2406879.html

    Thanks TMarina. What is it about Herceptin and Wednesdays lol. You, Marjie and I all receive our Herceptin infusions on a Wednesday ! ! !

    Take care all.

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  • marjie
    marjie Member Posts: 1,134
    edited May 2011

    Yes!!  What's with Wednesdays???.  I am off for tx this afternoon.  Glad that I only live about 10 minutes away from the cancer centre.

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  • ReadingMama
    ReadingMama Member Posts: 573
    edited May 2011

    I'm generally a Wed gal also!  My next appt is next week.  I only switch to Tuesdays when I see the MO as she is not there on Wed.

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  • PearlGirl
    PearlGirl Member Posts: 549
    edited May 2011

    Wednesday it is! I started chemo with Herceptin on Wednesday, June 23,2010 and if all goes as planned, I will have my final Herceptin infusion on Wednesday, June 22, 2011.

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  • marjie
    marjie Member Posts: 1,134
    edited May 2011
    Oh Bon - lucky you!  I think my last one is in December some time.  On a Wednesday ofcourse!
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  • Omaz
    Omaz Member Posts: 5,497
    edited May 2011

    Mine is scheduled for Aug 2.  I have my port removal scheduled for Aug 3!  Oh that will be a happy day for me.

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  • 1marmalade1
    1marmalade1 Member Posts: 308
    edited May 2011

    Count me in as a Wednesday gal!  Just got back from #15 - 3 more to go!

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

    Had my first Taxol and Herceptin on Monday.  Will be getting it weekly for 8 weeks then switch to every three weeks for the rest of the year.  And guess what since Memorial Day would be scheduleded for my treatment, I have to switch to Wednesday!  They do not have chemo on Tuesdays where I go.  Sounds like I'm in good company.   So far, no SE's that I've noticed any way.

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  • achpurple
    achpurple Member Posts: 290
    edited May 2011

    My chemo was always on Wednesdays and now Herceptin still is - #3 next Wednesday!

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  • TMarina
    TMarina Member Posts: 692
    edited May 2011

    I had my infusion today.  No idea what # it was, but my last one is Aug. 15th, which happens to be a Monday!  My last 2 will be on Mondays, because Wed, July 20th I'm heading to Duluth for 3 days with my family to celebrate my birthday (haven't been able to celebrate it for the last 2 years, thanks to chemo and rads!). I switched my infusion to the Monday after instead of before so I won't be too tired to enjoy myself.  I was excited to get a schedule that has my last Herceptin on it!!

    Feel a little tired and yucky now (yucky taste and tummy), but not too bad.  Had my MUGA on Monday and the med. they have me on is working great and keeping my heart function up (it's at 60 now).

    Regarding port removal--I think I'll keep mine until I'm done having ct scans every 6 months (for colon cancer).  I have my next one in Aug, then we'll see what the onc says after that.  I'm so used to the port that I don't even notice it anyways.

    kay--Hope all goes well with the Taxol.  I had the bone pain that lots of people get, but took Percoset and that worked great for me.  Much easier for me than AC!

    Take care!

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  • lago
    lago Member Posts: 17,186
    edited May 2011

    I'm a Tuesday gal (next one this coming Tuesday) I think my last one is in September. I started October 5th.

    My neuropathy has not increased since I stopped chemo. My left heel is numb and maybe a little on the right. When it's cold and damp I notice it more.

    Question for those of you that had a MUGA that was so low you had to stop herceptin for a while. Did you have any symptoms like shortness of breath, tired, bad fluid retention etc?

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  • ReadingMama
    ReadingMama Member Posts: 573
    edited May 2011

    Bon - congrats on almost finishing!! That is great, mine is so far away I'm not even figuring out when it would be yet, but definately not till late 2011.

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  • TMarina
    TMarina Member Posts: 692
    edited May 2011

    lago--I didn't have to stop, although I came close. If the med didn't work I would have had to stop.  I had no symptoms.  My ef went from 65 to 50--a steady decrease until the bp med.  Hopefully some others that did have to stop will respond too!

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  • lago
    lago Member Posts: 17,186
    edited May 2011

    Thanks TMarina. Just asking because I had a MUGA before chemo/herceptin but never had another one. I have my 12th (I think) Herceptin next Tuesday. My first (with chemo) was October 5th. That's over 7 months.

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  • Omaz
    Omaz Member Posts: 5,497
    edited May 2011
    Lago - You could ask for an ECHO - they are very easy.
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  • lago
    lago Member Posts: 17,186
    edited May 2011

    Tuesday I'm going to ask the chemo nurse just to make sure that they weren't supposed to set me up for a MUGA at 6 months.

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

    Good !

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  • LindaKR
    LindaKR Member Posts: 1,577
    edited May 2011

    I had TCH and my onc had an echo done before I started and another after I finished the TC.  There wasn't any change.  I just finished my herceptin and he didn't do another one.  I think the theory was if there wasn't any change after chemo then there wouldn't be, the EF was 65 each time. 

     On another subject - I've had lots of stiffness, joint and muscle pain (taking pain meds for it)  , as well as fatigue that hasn't gone away.  Chemo ended in Sept 2010 and rads in Nov 2010.  Started AI's in Sept also.  It's interesting that several people that have received herceptin only have the same SE's.  I've changed to the 3rd AI, thinking it was from that, now I'm wondering if it is really from the herceptin, as it got worse about the time I went from weekly to every 3 weeks.  Which was also when I started the AI - since AI's frequently cause the same SE I assumed that was what was going on.  I guess I'll know soon enough, just had the last herceptin yesterday.  I'm really glad I read those posts, as I was pretty depressed thinking that I would have to deal with the pain for 5 years.

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  • 1marmalade1
    1marmalade1 Member Posts: 308
    edited May 2011

    lago:  My EF went from 60 to 45 within 2 or 3 months - and it kept wavering back and forth between 45 and 50.  A few times they didn't give me H and had to rebook.  My onc won't allow it unless it's 50+.  I've had an Echo before every H since tx #9 - I just had #15 yesterday.  My onc says better safe than sorry, doesn't want me to end up having long-term heart problems.

    The Echo is a very short, easy procedure.  I'm glad my onc takes all the necessary precautions.

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  • lago
    lago Member Posts: 17,186
    edited May 2011

    thanks for the replies. So it sounds like most people didn't have any symptoms.

    BTW right on the Herceptin site it states the most common SE are:
    Fever
    Nausea
    Vomiting
    Infusion reactions
    Diarrhea
    Infections
    Increased cough
    Headache
    Fatigue
    Shortness of breath
    Rash
    Low white and red blood cell counts
    Muscle pain

    I also found this interesting (glad I got Nuelasta on Chemo):

    "Worsening of Low White Blood Cell Counts Due to Chemotherapy

    Worsening of low white blood cell counts to serious and life-threatening levels and associated fever were higher in patients taking Herceptin in combination with chemotherapy when compared with those who received chemotherapy alone. The likelihood that a patient will die from infection was similar among patients who received Herceptin and those who did not."

    source: linky  

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  • LindaKR
    LindaKR Member Posts: 1,577
    edited May 2011

    Somehow the info on the herceptin causing fatigue and muscle pain went in one eye and out the other, must have done the same for my onc, but when I saw him this week, he suggested that it might have been the herceptin.

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  • PearlGirl
    PearlGirl Member Posts: 549
    edited May 2011

    Wow, Linda...that is the first time I have heard of a doc thinking that Herceptin could be the problem. Hooray for your Onc.

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  • LindaKR
    LindaKR Member Posts: 1,577
    edited May 2011

    Bon - I'm blessed with an onc that really listens to his patients, and learns from our experiences!!!!! 

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  • PearlGirl
    PearlGirl Member Posts: 549
    edited May 2011

    Linda, Tell your onc 'THANKS' from us all !

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  • lago
    lago Member Posts: 17,186
    edited May 2011
    BTW Bon did I ever tell you I love your profile photo. Makes me smile everytime I see it.
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