Herceptin Side effect - weight gain?

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hicksc
hicksc Member Posts: 17
edited May 2015 in HER2+ (Positive) Breast Cancer

I am new to this discussion board and have an unusual question!  I finished FEC x3 and Taxotere x3 in May and radiation end of June.  I started Herceptin every 3 wks with the Taxotere and am about to go for my last dose next week.  I have had a variety of side effects, nothing very serious but the usual drippy nose, peeling nails, muscle and joint pain, quite a bit of fatigue, some depression.

Here is my question - I am also a very serious runner. I was fortunate that the chemo and radiation didn't stop me from continuing to train and work out, although at a reduced level.  I am currently training to run the Boston marathon in April ( I had qualified in 2007 but had to defer until this year because I just couldn't train at the level I needed to during chemo).  I am doing pretty significant mileage right now - at least 30-35 mile weeks with long runs btwn 18 and 20 miles - and working out at least twice a week.  My mileage has increased over the last two weeks very significantly so I can't understand WHY I'M GAINING WEIGHT!  Whenever I have trained like this previously, I have always lost weight or at least maintained current weight.  So it makes me wonder if anyone else has found weight gain to be a problem towards the end of their course of Herceptin.  I assume it might be because the effects are cumulative.

Anyone else out there gaining weight?  It's driving me a little nuts!

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  • mamakaren
    mamakaren Member Posts: 225
    edited February 2009

    Your not alone Hicksc!! I can't stand this, as it is i'm already feeling down on myself and then this weight doesn't seem to stop. I feel very swollen and my stomach is just big! It's like most of my weight is going to my stomach. I walk about an hour every day or at least 3 days of the week. I guess it's a SE from Herceptin along with many. Not serious but bothersome. I have 8 months to go so i'm kinda wondering what i'm gonna look like????? LOL

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  • hiker
    hiker Member Posts: 22
    edited February 2009
    Wow! you all hit the nail on the head. I hate the weight gain.(15 pounds)  I have 5 Herceptin treatments left and have never weighed soooo much. I worked out all thru the chemo and rads.  I completed a sprint Tri 20 days after my last chemo (I did NOT come in last!!!)  I am now training for the Danskin Tri June 28th.  But the wieght just keeps on adding. HELP!!!!!!!!
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  • hicksc
    hicksc Member Posts: 17
    edited February 2009

    Phew!  That's a relief - I thought it was just me and I had gained too much muscle!!  Which wouldn't explain why my abdomen is larger though :( 

    This happened after my chemo too, only it was more all over and puffier.  And it went away thank heavens.  So I can only assume the same thing will happen this time ( I hope!)   I haven't gained that much, maybe only 4-5 pounds but I'm small and I notice it - and it is very inconsistent with the amount I train.

    Not sure there is much we can do but wait it out (no pun intended!)

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  • coonie
    coonie Member Posts: 7,618
    edited February 2009
    This has happened to me too!!! I finished my last Herceptin January 30 and I have put on 20 lbs !!!! I think part of it is Arimidex, but hoping since I've finished Herceptin, I might can get rid of those extra pounds!!! I'm only 5'2" and 20 lbs feels like 50!!!Undecided .....and being boobless, the only place to go is right in the middle !! aarrrggghhhhh
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  • hicksc
    hicksc Member Posts: 17
    edited February 2009

    By the way congratulations hiker on your sprint Tri - well done!  I raced a 5-miler about 6 weeks after my last chemo and was sure I was going to come last - and I didn't either!

    Good luck in June!

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  • EGAL
    EGAL Member Posts: 539
    edited February 2009

    I finished Herceptin 8 months ago and I am still 30 lbs. heavier than when this whole mess started with the chemo, rads, etc.  I was on Decadron for 3 months due to brain mets and I puffed up like a balloon.  I am nearly 2 months off that and the puffiness is gone but I am still fat!  My middle is bigger than my new foobs, and it ain't pretty.  I always were a jacket/blazer!!!! 

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  • snowyday
    snowyday Member Posts: 1,478
    edited February 2009

    Yeah, that's what I'm finding my stomach is huge, I've never had a stomach like this, I look six months pregnant, I am not a big eater never have been, but it doesn't matter, I wakeup with this huge stomach and after a couple of cups of tea I'm full, I even started drinking Stevia, going low fat, (ice cream) it's awful, I have no money for new summer clothes so I've started this desparate way of trying to get rid of this stomach wrap, thats what it's like as if someone wrapped my middle section with fat and only the middle section.  Now I know it's not just me I almost feel better, I wonder if it has anything to with the cardio issues with herceptin.  I had never worried about heart issues before as they always said measure the hip to waist and my ratio was good until herceptin.  I am thinking I really want off of this med. Big time and it's not just the weight but everything aabout it and I hate that the oncs right me off as nuts.  Sorry thats my rant about this bloody herceptin.

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  • coonie
    coonie Member Posts: 7,618
    edited February 2009
    Well I just finished up my year's worth of treatment. I'm hoping the "belly fat" will go away after I get it washed out of my system. I've been trying to limit calories and increase activity, so we'll see how that goesUndecided Good luck everyone!
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  • BDB
    BDB Member Posts: 17
    edited February 2009

    I finished one year worth of Herceptin at the end of December and gained a whopping 31 lbs. while exercising three or four times a week. Has anyone that has finished Herceptin had any luck dropping the weight while also on tamoxifen? Although I am so thankful for good health, this weight gain coupled with chemo-induced menopause can really get me down from time to time. Would love to know there is a little light at the end of the tunnel on the weight gain......

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited February 2009

    Well, I haven't gained any weight on Herceptin ...

    You're sure this isn't fluid retention? I did have some trouble with that on Taxol and Herceptin. It continued on Herceptin alone, but less so.

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  • bevie
    bevie Member Posts: 1
    edited February 2009

    I'm so glad I found this post.  I thought I was going crazy.  I have my last Herceptin February 26th and I have gained about 20 lbs. during this all......no matter how I watched what I ate!  My nails are peeling and my nose is running constantly.  Can't wait to be done with this year long treatment.  Like the previous people I'm wondering if this weight gain thing will stop once the Herceptin is done and, if so, how long does it take?

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  • HensonChi
    HensonChi Member Posts: 357
    edited February 2009

    I was wondering if the weight gain was from the A1s such as femara?

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  • TammyLou
    TammyLou Member Posts: 740
    edited February 2009

    No AIs or Tamoxifen (ER neg)...up about 20-25.

    Tammy Lou

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  • oma4
    oma4 Member Posts: 5
    edited February 2009

    I finished a year of Herceptin in June;am on my third AI,(Aromasin). My weight is about the same as it was when I started on this roller coaster but my "belly" has increased a lot in size. I can still button my pants but this increased "muffin top" is not a pretty sight. :(

    I had a lot of side affects from the chemo and herceptin so I have put off my recon until Nov. I'm trying to keep the faith that I will be able to get rid of some of this belly fat by then.

    I'm keeping a food journal and have started to add some exercise back in but nothing is moving. I'm trying to be patient but some days I just get depressed. Still I'm going to keep trying everyday.

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  • AnnaM
    AnnaM Member Posts: 1,387
    edited February 2009

    I finished my year of Herceptin in April 2007, probably 20 lbs heavier than before my diagnosis in June 2005. I am back down to my pre-surgery/treatment weight. Yes, it took regular exercise and wise eating, but it does go away!

    Good luck to all of you. I remember the runny nose, the splitting nails, even some black toe nails! Yikes! I remember the tingling in my toes from Taxol (L-Glutamine really helped me there) and not being able to pee in public places because aiming was impossible, but that was from not having any hair from chemo I guess. Nails are back to normal;  I do still have a wee bit of tingling in one foot, but only when I put pressure on it in a certain way. I can again trust myself to hover over toilet seats without making a mess and my nose only runs when I have a cold, like right now. My hair grew in much curlier than before and I had a whole year of curls and no need to blow dry. My hair is now back to where it was before chemo. Ah well, I love it all the same.

    Thank heavens for Herceptin!

    Hugs to you all,

    Anna

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  • BDB
    BDB Member Posts: 17
    edited February 2009

    Thanks so much Anna for sending your hopeful message about weight loss!

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  • snowyday
    snowyday Member Posts: 1,478
    edited February 2009

    Thanks for the hope Anna, it's so weird that even dieting I don't stop gaining so at least I know there is light at the end of this tunnel.  How many months did it take after you stopped herceptin? Just curious.  Thanks

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  • AnnaM
    AnnaM Member Posts: 1,387
    edited February 2009

    I took my own sweet time at first, so it took me about a year to lose the first ten lbs. Then I rejoined Weight Watchers, and the second ten or so lbs took just about five weeks. A whole lot came off when I changed my diet by excluding sugars and increasing fruits and vegetables. I've never been a fan of meat. I like fish, though. I think if I had put my mind to it I would have lost the entire amount much faster, but not right after finishing Herceptin. I was still pretty shaky about the whole breast cancer thing at that point.

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  • redbeauty
    redbeauty Member Posts: 5
    edited February 2009

    Hi Everyone,

    I have one more Herceptin left and DID gain about 10 lbs. i thought it was left over from previous chemo and steroids, but that was 8 months ago. I also exercise and watch all foods, but belly is larger than it ever was. I hope splitting nails, runny nose and WEIGHT will go away. Cannot complain because I am a SURVIVOR (14 mons)    Carol redbeauty

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  • Estepp
    Estepp Member Posts: 6,416
    edited February 2009

    How about bone pain with Herceptin? My onco says no way.. so I am set up for bone scan next week...second one since dx.

    I have been off all chemo since Nov, 08 and have been on Herceptin alone now for a month. ( every week as rads are now starting).

    The bones in all my fingers hurt and one bone in my left lower arm.. OUCH....

    This is so freaky..

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  • fightinhrd123
    fightinhrd123 Member Posts: 633
    edited February 2009

    Laura, read the Herceptin side effects, bone pain is a side effect that it seems they are just starting to realize.  I have it, just had a full body xray.  My onc said a couple of months ago he wouldnt have believed it, but he's seeing it more and more now. 

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  • Yogi70
    Yogi70 Member Posts: 654
    edited February 2009

    I hear you!! I should be finished with Herceptin in April and I am trying to shake the weight!

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  • Estepp
    Estepp Member Posts: 6,416
    edited February 2009

    Thank Laura... wow... this makes me feel better. Why is it our minds always go to mets?????

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  • fightinhrd123
    fightinhrd123 Member Posts: 633
    edited February 2009

    Ohh I know Laura, its horrible, and your mind is such a powerful thing!!!  I have had mets scares loads lately!!!  I just keep reminding myself how chemo wears on your body, cant expect to walk away with no battle scars!

    Laura

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  • hicksc
    hicksc Member Posts: 17
    edited February 2009

    Well it looks like it was just water retention because most of the weight has disappeared and my clothes are fitting normally again.  So that might be at least part of it for some of you as well. They do say that can be a side effect.

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  • snowyday
    snowyday Member Posts: 1,478
    edited February 2009

    I asked for fluid pills and it didn't bring my stomach down, what kind did you get and how often did you take them, I was taking one half daily, I have a hard time on fluid pills, but I'd rather lose this stomach and put up with the se while it's still cold out.  Maybe I should take a whole one each day and see how that works, my doc told me to take them the I want to. My mother has congentital heart disease and she ended up in the hospital, luckily we had her on a list for a heart specialist, he kept her in the hospital for a week and they control her fluids, gave her fluid pillls and she lost something 43 lbs water weight.  The fluid stayed in her body and she couldn't breath, she now takes them everyday and says she feels like a new person, just makes me wonder if herceptin is causing all this stomach weight that's exactly where my mothers' was. 

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  • hiker
    hiker Member Posts: 22
    edited March 2009

    I complained to my surgeon about the weight gain.  She is much more sympathetic than my onc. Dr.  She made a referral to a nutritionist, who I will see in 2 weeks.  I am now keeping a food diary.  I do some sort of workout everyday but I gained another 2# last week, even though I skiied like crazy for 2 days. My last herceptin is May 13th.!!!!

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  • navygirl
    navygirl Member Posts: 886
    edited March 2009

    oh, it's sooo nice to know you're NOT crazy!

    I have gained 30lbs since my surgery last year. When I finished chemo in October I started exercising again and watching what I eat - making a conscious effort to choose smart food instead of "just grabbing" something. No matter what I do, I am back and forth by 5lbs but that is it! I haven't really lost anything. I've been so down about it wondering what the heck was going on. I expected it with steriods...but I really thought since being off of them I would start losing it. I will keep trying as I still have 6 more months of weekly doses so even if I can't lose just yet, hopefully I can keep it from getting worse.

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  • Runnergirl
    Runnergirl Member Posts: 4
    edited March 2009

    By shear luck I found this discussion board. I, too, am an advid runner (30-40 miles a week) and lift weights, eat really well and have low fat and calorie intake. Yet, I've gained 10 pounds! I've got two Herceptin treatments left and I'm ready to just not go. I've spent months telling everyone something was up and they just said it was my age (43), I'm over doing it and my body is hanging on to all calories, I'm premenapausal.... Grrrrrr.... I KNEW it! Thank you, thank you. I was about to go crazy. I can't workout much more or eat any less.... I've been in tears on the damn scale.

     So... anyone know how long the herceptin sticks in your system? 

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  • snowyday
    snowyday Member Posts: 1,478
    edited March 2009

    I read on the SanAntonio BC journal has a half life 18 -25 days.  I've gained weight as well and I've never had a belly, I written about this before.  But my doctor did prescribe fluid pills, my rings cracked right on my fingers two of them. So I am taking the fluid pills, I'm drinking alot of water though because I'm thirsty, my rings fit again it's been five days and I have five pills left.  And I'm going to take them.  I make sure to have a banana or ensure or V8 anyting with lots of potassium in it. My belly is going down but not like my fingers and legs, but I'm taking the full ten days. If your doc doesn't recomend them don't take them, they make me really tired.  But I'm peeing finally like crazy and its great.  I too was told it's your age but it didn't make sense that it happened in three weeks.  My sister was here for my treatments and between the fourth and fifth it hit my belly, my sister was so surprised when I showed her.  One women wrote that it took her a year to lose it.  There has to be a reason so many of us gained weight in the belly section, I just wish I knew what it was.  Good luck.  And believe me your not crazy.  Hugs!  Oh congrats only two to go!!!!

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