I know it sounds weird, but does herceptin cause weight LOSS?

weety
weety Member Posts: 1,163
edited June 2014 in HER2+ (Positive) Breast Cancer

I'm not looking a gift horse in the mouth.  I just don't happen to have the extra pounds that I've been losing!  I ended chemo at Christmas time and weighed 107.  Since December, now that I'm on herceptin only, I've lost 7-8 pounds and am down to 99-100lbs.  It's only been 4 months!  Thats almost 10% of my body weight.  If I wasn't eating, I might not be concerned, but I don't think I've changed my eating habits.  The weight just doesn't seem to go back on. 

Has anyone else experienced a weight loss while on herceptin only?  It sure is making me nervous!

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  • Sassa
    Sassa Member Posts: 1,588
    edited May 2010

    Yes, I lost weight on herceptin for the 4 months I was on weekly doses.

    A side effect of herceptin was loss of appetite, so while I made sure I ate healthily, I know my calorie intake was probably reduced (no urge to snack between meals).  I lost about 1 lb per week (and I could afford to lose the weight).

    My oncologist noticed the weight loss, but when I explained the anorexia to her and how I was eating, she didn't worry.

    When I changed to one every three week dosages, the weight loss slowed but still occurred (1 -2 lbs per month).

    What does your oncologist say about your weight loss?  If he isn't worried, you shouldn't be.

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  • Jenna1961
    Jenna1961 Member Posts: 71
    edited May 2010

    No, I am on Herecptin only (every 3 weeks) for more than two months now and I gained 3 pounds.

    Fatigue and aches - yes, but lots of apetite. Weight gain started after AC, while still on Taxol and I assumed it was due to "chemopause" ,

    Maybe you worry too much - and all the time (?)

    Best,

    JEnna

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  • weety
    weety Member Posts: 1,163
    edited May 2010

    Jenna, I am the first to admit I worry too much and all the time!  But seriously, though, this weight thing has really got me nervous, because I just don't have much to lose.  I'm very petite and small boned, but 100 pounds is about as low as I want to go!  I would say that before all this breast cancer stuff I was always right around 105.  I rarely (almost never!) went above or below that. It didn't seem to matter what or when I ate, I always just stayed the same for the last 15 years.  107 after finishing chemo was probably the highest I've ever been. For the low end,  I think the last time I was under 100 was back in college.

    Sassa, maybe my appetite is less and I'm just not realizing that I'm not snacking and nibbling throughout the day.  I guess that could be the culprit.  I havent noticed that to be the case, though, but it is possible.  My onc doesoesn't seem to be worried, but I think everyone just always assumes I'm just petite and small.  But, A few pounds to me is a lot more (percentage wise) than to an average or larger person.  How did you find out herceptin can cause appetite loss?  Is that listed on the side effects somewhere? Everything I can seem to find just talks about weight GAIN on herceptin.

    Thanks ladies for the replies!

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  • amlg1
    amlg1 Member Posts: 596
    edited May 2010

    I've been on Herceptin since August,my appetite is the same and my weight has been about the same.Although I wouldn't mind loosing a few,but I can understand why you are concerned.

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  • tooyoungtohavebc
    tooyoungtohavebc Member Posts: 779
    edited May 2010

    I WISH!! I have done herceptin many times and no drops in weight for me. I bet it is because you stopped chemo. I stopped a chemo in october and 2 months later EVERYONE was telling me I lost so much weight. It was just cuz I wasnt so bloated and carrying chemo water weight.

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  • Sassa
    Sassa Member Posts: 1,588
    edited May 2010

    Weety,

    The information is in the actually prescribing information for herceptin.

    The anorexia occurs in less than 5% of the patients, but it is a recognized side effect. The labeling includes the number of patients with anorexia with treatment with certain chemo agents alone and in combination with the herceptin.  The numbers below represent the actual number of patients with the side effect over the total number of patients treated in that arm of the particular study.

    Herceptin alone 14/352

    Herceptin and Paciltaxel 24/91

    Paciltaxel alone 16/95

    Herceptin and AC 31/143

    AC only 25/135

    So while we are in the minority, it is an actual side effect . 

    I had AC for my chemo and then the herceptin.  The loss of appetite and weight loss started with the AC and continued with the herceptin.

    By the way, weight gain  (other than with the continued steroid use in long term chemo) has never been listed as a side effect of any of the drugs.

    Now, if you read closely, many women complain of being too tire to exercise and many indulge themselves with favorite comfort foods (many which would bulk up an Olympic athlete without exercise) and then complain of the "chemo" weight gain. That weight gain is simply a matter of calories in exceeding that amount of calories used in daily activity.

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  • weety
    weety Member Posts: 1,163
    edited May 2010

    Thanks Sassa!

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  • nobleanna007
    nobleanna007 Member Posts: 641
    edited May 2010

    Just wanted to let you know I worried about it also, sense I was put into menapause also and lost over 40lbs. It caused me not to have a DIEP due to weight loss. Like you I ate but kept losing, found out my thyroid was out of whack. Had aThyroid problem before but was stable but it ended up me having to meds. So maybe have them check your thyroid! Just a suggestion.

    HUGS-Bridget

    1 

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  • my2boys
    my2boys Member Posts: 339
    edited May 2010

    I was on Taxotere Carboplatin and Herceptin.  The fatigue was awful and I gained about 15 pounds.  After I went off of the Herceptin (I was on it for one year) I lost most of the weight, but I had to work it off with a LOT of exercise.

    I just started chemotherapy again, this time AC and I begin Herceptin with the Taxol in about 4 weeks.  The AC has not given me the fatigue I had with the TCH so I am much more active and I have lost 10 lbs, probably from lack of appetite combined continued exercise.  I hope that the fatigue does not return with the Taxol/Herceptin, but if it does, I will watch to see if the weight creeps back on.  I will probably be on Herceptin for a very long time, if not for the rest of my life, so I am hoping that weight does not return.

    My guess is that Sassa is correct, at least in my case.  I was so fatigued with the TCH, I just couldn't get off of the couch.  When I was hungry I ate whatever was easiest, not the healthiest.

    One more thing.....the Herceptin did swell my joints a bit.  I noticed my fingers and knuckles were much bigger when I was on it.  As soon as I was off of it, my joints went back to their normal size and I could wear my wedding ring again.  Now it is falling off....sigh.

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