Herceptin Side effect - weight gain?

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  • osopicky
    osopicky Member Posts: 1
    edited January 2011

    I too have noticed significant stomach bloating since last chemo and herceptin only treatments. Also nail splitting and shredding. Chemo messed with my thryoid even tho' my doc said it wouldn't. Have your TSH score checked as these are also symptoms of hypothyroid. Score should be between .05 - 2.0. Hypothyroid is also a post menopausal symptom.

  • PinkSurvivor
    PinkSurvivor Member Posts: 63
    edited February 2011

    You can add me to the gained about 25lbs I was diagnosed 7-19-10, started chemo w herceptin in Sept, bi lateral mastectomy 12-27-10 and still doing herceptin every 3 weeks and I have this darn tire around my middle that wont seem to disappear.  I kept thinking I was crazy and like most of you, when mentioned to my dr. she said it wasn't a side effect.  I eat healthy but it just doesn't matter. I know mine also has to do with not being able to exercise like I want to since my surgery and living in Ohio with all this darn SNOW right now. 

     So thankful for this site, yet again.  I can come here and not feel so alone or like I am the only one experiencing things.

    I am thankful to be CANCER FREE!!!!! and I know I shouldn't complain.

  • thegood5
    thegood5 Member Posts: 478
    edited February 2011

    melania, I too have some pain in my left breast where my tumor was, and in my armpit where my lymph node is.  Funny thing, I don't have any pain in my liver, and I do have a tumor on it.  Onc was surprised when she would push on my liver and it didn't hurt.  I am 3 weeks out from TCH after 6 treatments and have my lumpectomy on the 23rd. 

    I am so relieved that I'm not going totally nuts about the weight gain.  I have gained 25 lbs ion 5 months on Herceptin, and the real bummer of it all is that I am on it forever for liver mets....hope I can find the right diet and exercise to lose it or I'm going to look like the blueberry chick on Willy Wonka!

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

    I finished chemo 3.5 weeks ago. I had put on 16lbs but at least half of it was fluid. My legs, tummy and arms swelled up. I couldn't even zip up my booties. My onc finally put me on a low dose diuretic. I lost 8.5lbs in 2 days. I can see my ankles again and my tummy is gone.

  • CoolBreeze
    CoolBreeze Member Posts: 4,668
    edited February 2011

    Have any studies been done on this?  I did a year of herceptin - finished December 2nd.  Never gained a pound.  I'm not saying it doesn't happen but I just wonder if it's lifestyle changes that people make when going through chemo and herceptin that causes weight gain and not the herceptin itself. My lifestyle and eating has stayed exactly the same for my entire adult life and cancer didn't change that.  But, I think maybe more active people get tired and rest more and don't realize it.  People who do chemo have the taste changes that cause them to eat differently.  Bones ache with herceptin and people move less. Some people go into menopause and their metabolism slows down, etc.

    I don't know, but I think if you are a person prone to gain weight, these changes may affect that.  Not saying people haven't gained weight but I am just wondering if it is actually the herceptin.

    Just throwing it out there.

  • elmcity69
    elmcity69 Member Posts: 998
    edited February 2011

    It's a good point, CoolBreeze, and I wonder if our various metabolisms just get hit differently. I have always gained weight easily, although I can lose easily with effort.

    The easiest way I ever lost weight, however, sad to say, was on the dose dense AC! (I made my onc almost fall off his chair laughing when I noted that AC is a dieter's dream.)

    However, since Herceptin and an oophorectomy, the weight is not coming off, but going UP! It is insanely frustrating, since my diet is better than ever and I'm doing yoga (vigorous vinyasas, hardly easy) 4-5x a week. My naturopath thinks I'm hypothyroid, so off for bloodwork this week. We'll see.

    IEvery time I read one more article about fat girls and breast cancer, I feel like yelling, "I KNOW, I KNOW,  I"M WORKING ON IT!!!"Yell

    :)

    janyce

  • Kerry12
    Kerry12 Member Posts: 3
    edited April 2011

    I'm new to this sort of thing as well (and from Canada), however, not new to my cancer. In Dec.

    of 2006 2 rather large masses were found on liver from a CT scan I had taken. They determined that this cancer was mets from somewhere. So I then started a 2 month journey of tests while being poked and prodded etc., etc until they FINALLY discovered it was Breast Cancer with mets to my liver. That date was Feb. 22/07. On Mar. 2/07 I had started my 6 mth, 12 session chemotherapy treatment of Taxotere (every 3 weeks). At my 2nd treatment that's when my Herceptin treatments began. Today is Apr. 19/11 and I'm still on the every 3 week schedule for the Herceptin. When I was 1st Dx I was given a prognosis of 2-4 yrs, so that was 4 yrs ago Feb. of this year, 2011. Since that initial Dx i have further mets activity. The cancer has spread to my pelvis, my Rt femur, my thoracic spine (4/5 level), and the frontal bone of my skull where there are 2 spots. Nevertheless, I'm very proud of myself, that I've made it past the 4 yrs. I consider every day now truly a gift.



    Now, this issue about weight gain and Herceptin........I was beginning to wonder that myself. Probably in the last year I've put on 10+ lbs myself and have had my abdomen get enlarged which is oh so frustrating. Need this like a whole in the head!! Last week I went to my Family Dr cuz I was feeling generally down and blah. I, too, as some other people mentioned have been retaining water so have the puffy ankles and hands etc. Now, I'm not out running tri-athlons and marathons like some of you other amazing women........but I am playing (ice) hockey, volleyball, in the summers I play baseball and I golf. Admittedly not tremendous aerobically demanding activities, but I am definitely way more active than many healthy women my age (almost 52). Sometimes I think the enlarged upper stomach is from my liver being enlarged itself. But the doc tells me no! My Dr. did some extensive blood work on me and turns out my sugars are up just a bit. My thyroid's ok, my kidneys are ok (I am also on Pamidronate for my bones and it can be hard on the kidneys).



    I have babbled enough for my 1st time I believe. March on! All you brave, strong fellow BC survivors and thrivers!!



    Kerry

  • thegood5
    thegood5 Member Posts: 478
    edited April 2011

    Kerry, your story sounds very similar to mine as far as your liver, a week after my Dx I had a PET and they found a nodule on my liver.  The Herceptin shrank it considerably, and as long as there aren't any more nodules showing up on my next PET (in June...gotta get thru rads first), I will be having a liver resection.  It is so encouraging to hear your positive words and to know that you are fighting and winning!  Nice to meet you on here!  April

  • IowaSue45
    IowaSue45 Member Posts: 586
    edited April 2011

    I have been on herceptin since last Aug and put on 20lbs. and I feel I eat less because things don't taste good. I have not slowed down much kept on working through chemo and everything, never had a weight issue, right now I'm right around 150 and I didn't even weight that with my 3 pregnancies most I weighted expecting is 145. I am wondering if anyone else has bone, muscle and joint pain? I had herceptin every week for 5 months now every 3 weeks and I'm about ready to tell them I'm not doing it any more I am really tired of the aches and pains.

  • Critter
    Critter Member Posts: 4
    edited May 2011

    I finished chemo almost 2 months ago and will be getting Herceptin until October 2011.  I gained 22 pounds during chemo. 

    However, I do believe the Herceptin is either keeping the weight on or adding to it.  I am eating very carefully...counting weight watcher points, mowing the lawn, walking, taking stairs etc.  I cannot lose the weight.  I am puffy and very achy.  My doc does not seem to relate to this much.

    I find myself wanting to stop the Herceptin but the evidence seems to support its positive effects.

    If anyone has had any luck with losing the weight, let us know!  Or helping the extreme achiness.

    x

  • Nikisezz
    Nikisezz Member Posts: 14
    edited July 2011

    I am halfway throuh my hercepton treatment, and have had a bilateral mastectomy with no reconstruction. What a surprise seeing the view while looking down. Where once my breasts were all I can see, it's now this large, protruding soft tummy. Yikes! Not at all the view I anticipated. Sudden menopause? Hercepton? Inactivity? Who knows. I thank god for hercepton and try to accept my new body image, but oh, that belly.

  • BMac
    BMac Member Posts: 650
    edited July 2011

    I didn't gain weight on Herceptin (I have steroids to thank for the extra 10 lb) but it prevented me from losing the weight.  When I finished in Jan 2009 (first week), I got my energy back, began working out again and lost 6 lb. by the end of Feb that year.  By June /09 I'd lost another 4 lb.  So, yes, Herceptin definitely affects weight.

  • rackie
    rackie Member Posts: 192
    edited September 2011

    ladies, i am getting herceptin #15 on friday.  my gut looks like i have a beer belly about to explode!  it does not help with the double mastectomy!  i look down or sideways in a mirror and all i see is gut!  honestly i looked smaller when i was pregnant.  i am so happy to hear that i am not the only one.  i am also on tamoxifen, so this may also add to the weight. i have gone from a size 8 to a 12:( my muscles and joints have been aching on and off throughout the treatment and seem to be bad this week.  oh well, i have to look at the priorities and killing this cancer for good, is worth all the weight gain:)

    jackie

  • Suevo
    Suevo Member Posts: 1
    edited September 2011

    I have also experienced weight gain and have changed my diet and have lost 4 lbs in 2 weeks but my stomach continues to get larger.  So I know it is not my eating or what I eat that is causing the large stomach - it has to be the herceptin because it is the only drug I am taking - nothing else - not even a tylenol or vitamin - nothing.  My question is - does this go away after I stop the herceptin treatments? 

     My oncologist absolutely says herceptin does not cause weight gain - but it does something to my hormones or metabolism or something that causes my stomach area to keep growing by leaps and bounds.  Does anyone have any thoughts on what the herceptin does to our bodies?

  • rackie
    rackie Member Posts: 192
    edited September 2011

    i saw my mo yesterday and she said that for me it must be the tamoxifen.  she said that it lowers the estrogen and thus we gain weight like a man (typically in the stomach).  this may be part of my problem but i still think the herceptin has to do with it, because my bloating was down significantly and then i had herceptin and i bloated up again.  i think it must effect the metabolism. great my dad and i can have a beer belly contest and see how wins with the bigger belly! 

  • pmanghel
    pmanghel Member Posts: 5
    edited November 2011

    Yes ladies, HERCEPTIN causes weight gain, much to our disgust. I have been trying to find out a reason why, but none of my docs want to acknowledge any connection between HERCEPTIN  and any side effects. It's almost as if they have all been briefed to admit nothing! Surprised

    Anyway, I finally got some answers that might help explain what is going on. No, it is not all in your head, and no, it is not being caused by anything other than the HERCEPTIN. This is how is was explained to me.

    HERCEPTIN is a drug that seeks out a certain protein in your cells and that is how it knows to destroy those cells. When it has done it's job, the HERCEPTIN and the destroyed cells are flushed through the digestion track just as any ordinary protein would be when it leaves the body.

    So after 12 treaments, I'm thinkin my digestive track has been pretty bombarded with the residual HERCEPTIN and the cells it is destroying. You might think that this is not such a big deal considering all the stuff you eat on a daily basis. But, HERCEPTIN is not a natural thing. It is a pharamceutical, and they can be extra hard on the digestion track. Can you imagine what your abdomen would feel like if you took ANY invasive pharmaceutical for a year straight? Now you know.

    Don't fret ladies, because it will reverse itself. But, it took you a year to get this way, and it is NOT going to happen in a couple of weeks or months. Wait till the treatments are over, and watch those calories and exercise. And if all the weight doesn't come off, well I think it is a small price to pay to be cancer free.

  • Survivorwoman
    Survivorwoman Member Posts: 620
    edited September 2012
    pmanghel- Thank you for explaining what you know about Herceptin. I am also at least 20lb overweight who eats healthy, does biking, yoga, walking, etc. Still, I have a bulgy stomach area. I am however very grateful to be here and having had Herceptin. I have one more treatment to go. Yay!
  • ahdjdbcjdjdbkf
    ahdjdbcjdjdbkf Member Posts: 645
    edited November 2012

    I also notice that I bloat and my weight bounces right up after Herceptin. As other said, I am most grateful to be cancer-free. I have been an endurance athlete most of my life and my activity level is WAY down since chemo and radiation. I have completed my A/C, Taxol and 29 of 33 radiation treatments. I am looking forward to getting back on my spinning bike and re-claiming being the runner that I am and have always been. This is a hard road. I am up about 10 pounds from all of this but hoping that getting back to sweating more will help. Most of all I am grateful for good tumor markers and clear margins and I am staying positive. I am on Herceptin until next June and VERY grateful for it. You will never hear me complain once. There are women who would give ANYTHING to have access to healthcare and treatments like Herceptin.

  • Lestelle915
    Lestelle915 Member Posts: 3
    edited January 2014

    To: coonie

    I just finished up my  last Herceptin treatment and have gotten back to watching my calorie intake and have been getting back on the treadmill, not a runner, but I try to walk for about 45 mins 4 or 5 times per week.  I was wondering if after your Herceptin it was easier for you to start losing the weight?  I gained about 40 lbs this past year and am very anxious to get it off.  I hope all is well, thanks for your help,

    :)

  • CameraKim
    CameraKim Member Posts: 81
    edited January 2014

    Boy, seems as though lots of us have experienced the same issues on Herceptin. Achey joints and for me a 20 pound weight gain also right around the middle. Lestelle915, you and I started about the same time and I too just finished Herceptin in December. I have been on a strict low carb diet for the past three weeks and I've lost three pounds. Usually I'd be down a lot more already…makes me wonder if we are holding onto a lot of water weight for some reason. Sadly, that water weight is all in my belly!!! 

  • joanp6
    joanp6 Member Posts: 16
    edited January 2014

    Hicksc: its been 5 yrs now since u posted that comment on weight gain.  Id like to hear how it worked out for u.  Did u find that weight/bloat was lost a lot after the first 6mths off of Herceptin?  Then, u had to lose weight the same way as if it were "earned" thru hot fudge sundaes??  Or was it harder to lose than food weight?? 

    It wasn't until I read this board that I felt better b/c NO ONE was acknowledging weight gain at the hospital from the Herceptin...they said that most gained weight from the other stuff (steroids/chemo).  But, I am much like u "hicksc", I have been into fitness my whole life and already eat on weight watcher plan, so there isn't much to cut out.  So, if Im working out the same, eating the same, this crap should be coming off.  And, it isn't.  Im still on it now but have only 4 more treatments.

  • joanp6
    joanp6 Member Posts: 16
    edited January 2014

    I would like to know if ur achey joints went away after Herceptin.  Or is this something that stayed??

  • joanp6
    joanp6 Member Posts: 16
    edited January 2014

    To me, gaining this 20lbs is the biggest Ive been in my life.  I think this is v hard on us gals that were always considered "thinner than avg" and now to feel big.  As u, I feel I shouldn't complain b/c I sure don't want this disease, but the fat is so hard on me.  And, my belly at nite is sometimes 6mths prego looking. 

    Did drinking more water  help??  A special diet??  How was it losing this stuff??

  • JulieLynn
    JulieLynn Member Posts: 144
    edited January 2014


    I haven't posted on BCO in a very long time but follow along certain threads.  I am so beyond frustrated with my weight too.  It took me two years to finish Herceptin because my EF kept dropping so I was stopped and restarted multiple times.  My last dose was on 12/23/13.  The only other time I have been this big was when I was pregnant.  I've gone from a 4 to a 10/12 and feel so dumpy.  10/12 is not a bad size at all but for me, especially being short, it's driving me nuts.  I'm so grateful to be NED and done with treatment but I just want to feel like myself again!  Glad to hear I'm not the only one struggling with this!

  • joanp6
    joanp6 Member Posts: 16
    edited January 2014

    Yes, I went from a skinny 8 to a skinny 12.  Im happy to be ridding of disease, but this is hard on me.  Do u think u gained more weight on chemo or HER2?

  • JulieLynn
    JulieLynn Member Posts: 144
    edited January 2014


    Oops!  One more thing....I had some bone pain with herceptin but not horrible and it's now gone.  Another gal I was in treatment with had horrible, horrible leg pain.  She was getting a double dose every two weeks.  She went back to a single dose once a week and the pain is gone.

  • JulieLynn
    JulieLynn Member Posts: 144
    edited January 2014


    Joanp6 - I don't know.  I originally thought it was the steroids, I gained about 45-50 total.  I did AC and then Taxol and herceptin.  I lost about 18 of that a few months after finishing the steroids for the Taxol but the rest won't budge.  I go up and down about three lbs but nothing more.  UGH!!

  • joanp6
    joanp6 Member Posts: 16
    edited January 2014

    I didn't  like that my dr acted like I was laying on the ice cream.  I was always into healthy eating.

  • Jaimieh
    Jaimieh Member Posts: 2,373
    edited January 2014

    I lost weight on steroids and chemo and didn't gain it back until I was just on herceptin.  Then I continued to gain and finally started to lose this past summer. 

    However my joints ached until about 6 months after I was done with vitamin H. 

  • Ukkate
    Ukkate Member Posts: 292
    edited January 2014

    This is so reassuring to read this. I have gained 20lbs too and have the achy legs etc. My onco blows off all my side effects. In fact,  he made an appointment for me with a rheumatoid specialist, which I didn't keep because I know it's pointless. I have had days where I've only eaten about 1000 calories and I can't budge the scale. And my period came back last week so I'm out of chemo pause!!!  Anyway, I only have til the end of April and I'm thankful for this drug but it's good to know that I will have a better hope of shifting the weight when I'm done

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