Herceptin Side effect - weight gain?

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  • joanp6
    joanp6 Member Posts: 16
    edited January 2014

    UKKate: good to see u caught it at Stage1 and so tiny!!  I think the digital mammos are finding that small where the other didn't.  Now that I see u never had to take the hard drugs (I was Stage2), now its even more solid info that its the Herceptin.  Sometimes when I get overly bloated, dr said it was ok for me to take a probiotic.  That seems to help.  Man, the other night my belly looked 5mths prego.  I guess Im going to deliver a water and gas baby!! LOL  Not to mention my little side blubber.  I was an ex model, so I have to keep telling myself ...this too shall pass.

  • Ukkate
    Ukkate Member Posts: 292
    edited February 2014

    Joan - I was happy to catch it early but I had a pretty large lump that grew really quickly, and then another one behind it that was not detectable - and then a big amount of DCIS - which is why I had to have the Mastectomy.  So it was definitely an aggressive cancer...

    Anyway - my bloating is all around my mid-section so I look less pregnant and just plain fat!

  • joanp6
    joanp6 Member Posts: 16
    edited February 2014

    UKKate: u look good in ur pic, so ur doing something right!!Happy  I guess we have to keep reminding ourselves all this fat/blubber is somehow part of making us better.  Probiotic helps a little, but not much.  I have never been this big my entire life.  And, Im not eating more.

    To all: how much do u think is blubber vs. bloat?? 

    Im hoping when Im off this stuff, say 5 lbs is bloat and I only have to work off the 15.  I try now, but its v hard b/c it makes u tired first few days.

  • Reikihobo
    Reikihobo Member Posts: 1
    edited December 2014

    I gained around 30 pounds (alot around my waist) mostly after chemo but primarily during the 6 month herceptin infusions afterward. I was more and more short of breath to where one stair step caused my heart to race and I got breathless. I had a lot of stomache issues: constipation, pain, heartburn and bloating. I figured the weight gain was part of just being out of shape from everything - I did not feel well enough to exercise. I had MUGA's and was okay but after just begging the doctor to do something they took me off of Herceptin - they believed I was having some kind of longer term reaction. It has been 5 years and my waist line is even larger and the same digestive problems come and go. I don't know when or why but it makes sleep almost impossible and I have to eat things like dairy because nothing else seems to go down smoothly. I am also a vegetarian so sometimes I wonder if this was somehow why that drug hit me so hard. I hope to recover from the side effects someday. I am not really looking for advice - just empathy and community. I have learned to take ginger tea, charcoal capsules and also some epsom salts when my digestive system seems to just shut down. It works (BTW) but I never know when these episodes lasting weeks are going to return. I also walk (about 2 miles a day). I hope the researchers are reading these testimonials and design a follow up study to address this huge impairment to quality of life.

  • Survivorwoman
    Survivorwoman Member Posts: 620
    edited December 2014


    Hi Reikihobo: I have not been around the boards lately, but today, for some reason, I logged in and saw your entry.  Interestingly, I am in a similar situation as you are. My belly size after Herceptin has doubled. And it has been 2 years since my last Herceptin infusion.

    I am physically active and eat a healthy diet,  so naturally, my doctors are puzzled as to why I am still a size 14/16 and not back to "normal" size of 8. (but my doctors are also wondering whatever happened to my hair as that did not come back after my chemos, but that is a different issue altogether) Anyway, my liver enzyme (ALT) has been slowly climbing and in October, it actually and suddenly had jumped from 51 to 88 within a week period of time. (we only now , last week, re-did the lab work to be sure). I am also due for an abdominal CT next week that I am dreading, though, my onc thinks it is not necessarily the liver I am having slight pain in, but I might have a stone in my gallbladder .

    She is also testing me for high iron levels that may also prevent proper metabolism as my glucose and cholesterol are also a bit high and has been since Herceptin. How do you use the Epsom salts? Are you doing the liver flush? And if so, how do you feel afterwards? I am asking this because I was thinking about doing it, too.

  • janincanada
    janincanada Member Posts: 258
    edited March 2015

    I am 5.5 years from finishing herceptin. I have lost the weight that chemo and herceptin dumped on me. I wish I could say it was easy.....but it wasn't. Eating well and exercising consistently 12 to 14 hours a week worked for me. It was slow and many plateaus; but I can wear my pre chemo jeans again. Since I am now 59 I count this as a huge win.

  • Jerseygirl927
    Jerseygirl927 Member Posts: 438
    edited April 2015

    just found this thread and thought, I seem to be gaining weight! Thought I was imagining it, but now I seem to have an answer, yes thank you, cause I thought I was nuts. Gaining a stomach on chemo therapy.... And yes, whatever I am taking, is having a horrible effect on my bowels. Cramps, diarrhea, constipation, blow outs. Wow what a gam met? Anyone else want to comment.

  • Tinkerbells
    Tinkerbells Member Posts: 211
    edited April 2015

    Yes, gaining weight - and in odd places. Belly and legs!!! Make it stop!


  • Jerseygirl927
    Jerseygirl927 Member Posts: 438
    edited May 2015

    having this appetite does not help, sorry about you who are nautious but I am still gaining weight. Maybe the herceptin panel can tell us more.

  • Jerseygirl927
    Jerseygirl927 Member Posts: 438
    edited May 2015

    had hercepton yesterday and waiting to see if other side effects kick in, I am waiting for acne , anyone have this issue? Numbness from chemo, but keeping an eye on that also.

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