Herceptin Side effect - weight gain?

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  • Runnergirl
    Runnergirl Member Posts: 4
    edited March 2009

    Whew. Thanks... and as for the two left... I've decided I'm not taking them. Family is in a fuss over that one, but it is causing me more mental stress at this moment knowing it's putting weight on me. Glad you are well!

  • mthomp2020
    mthomp2020 Member Posts: 1,959
    edited March 2009

    That would explain the weight gain!  I had lost 15 lbs. when I started this not so enjoyable journey.  Largely because I started eating better and didn't spend time that summer sitting around the pool with friends and drinking beer on weekends due to chemo.  I looked and fealt better with the weight loss.  Then I started Taxol/Herceptin in Oct. 08.  I really didn't start to gain weight right away, though.  It seemed to start creeping up in the summer, when I was on Herceptin and Zometa. 

    My husband works for a consulting company, and all his assignments are out of town, so he was only home on weekends.  However, from May thru December of 2008 they didn't have any assignments for him, and he was home 24/7, so I was cooking almost every night, so I was eating more.  Plus we had friends over around the pool each weekend so I was also drinking beer and eating a lot more snacks.  I regained the 15, plus added another 15 lbs. to my original weight.  Most of it was around the middle.  Needless to say, I wasn't very happy!  Hubby is back on the road again, and I have lost a few lbs., but it's slow going.  I'm thinking the Herceptin may have had something to do with it - my onc. said as much that it was probably responsible for the weight gain.  Since I'm on it for the long run, i guess I'd better get used to it!

  • hicksc
    hicksc Member Posts: 17
    edited March 2009

    Just wanted to note that the half-life of Herceptin is actually 28.5 days on avge which means that it can stay in your system for up to 24 weeks - they say the 'washout' period is between 18-24 weeks.  So don't be discouraged if the weight hangs around for a bit!

  • BMac
    BMac Member Posts: 650
    edited March 2009

    I too have the weight gain and belly fat (and joint pain; I feel like an old lady some days!).  I did not work out during treatments like I did when I had ovarian cancer.  I finished Herceptin on Jan 8 and since then I have lost 6 lbs (3 per month) and one and a half inches from my waist (in Jan, nothing in Feb and 1 inch from my hips.  I do a step work out for 40 min every other day and light weights (leg weights and 5 lb. arm weights) every other day.

    For me, I think part of the belly fat is due to menopause which is well documented but I now believe the Herceptin has definitely contributed.  I have also started eating healthier and it helps me to feel better, as does the exercise.

    Good luck to all.

  • Runnergirl
    Runnergirl Member Posts: 4
    edited March 2009

    Thanks for the encouraging words... But, ick... 24 weeks?! I have two treatments left and am thinking of not taking them. I will talk with my doc, but I can't believe these last two would make any difference in the long run...

     I keep excercising and running to fend it off what I can... 

  • coonie
    coonie Member Posts: 7,618
    edited March 2009

    I had my last Herceptin on 1/30/09.......and I STILL haven't lost the weight. Maybe it's the Arimidex......or maybe it's my new normal!!!  My Lord -- I HOPE NOT!!

  • jperry
    jperry Member Posts: 49
    edited March 2009

    I have gained 40 pounds since May.  Lost 10 since the middle of January but it has been very difficult.  I finished Herceptin in the middle of Feb.  I used to be able to loose wt very easily with eating well and exercising.  I really hope it gets better. I have not been this heavy since I was very pregnant with my girls.

  • hiker
    hiker Member Posts: 22
    edited March 2009
    I saw a nutritionist yesterday, hoping for some words of wisdom. Alas, nothing I didn't already know. Exercise more, eat less.  Yes, but I am exercising everyday and eating way less. Still no weight lose and a big stomach. I had my port removed Wednesday and my onc. surgeon said. "Eat one Lean Cuisen every day and all the salad you want and in 2 weeks you'll lose the weight."  She is young, 5'2' and probably weighs 90 #s. At age 60, it's just not that easy.  But I'm going to try very hard.
  • ipursuit
    ipursuit Member Posts: 45
    edited March 2009

    Just had my first TCH chemo 3 days ago and sorry to hear about the weight gain issues with Herceptin, both for you all and for me! 

    I have been researching the serum levels and half-life of Herceptin and getting different #s than you all are citing. I am concerned because my treatments were delayed (for a number of dif reasons) and I have read that steady state serum levels aren't reached until 12 wks into initial chemo/Herceptin treatment. 

    Would you all post the links to sites where you are seeing these figures?  I am going to call Genetech to ask too, but may not be able to get answers as I am "just a patient".

    Good luck ladies with shedding that middle tire.

    E

  • hiker
    hiker Member Posts: 22
    edited March 2009
    The nutritionist told me about a website she thought I might enjoy. https://www.fitday.com  WOW!!!! It's wonderful and free. It will keep track of all your calories, fats, carbs, protein just by putting in the food you ate. They have almost any food imaginable, including restaurant food. It will also chart all your activities.  I especially enjoy seeing on a graph just how many miles I rode my bike and how many miles I walked each day/week/month.  You can put in your present weight and your ideal weight and the date you wish to achieve it. Then it will tell you how many calories your need to reduce daily.. If you put in your weight everyday, it will chart it against your ideal reduction rate.  great fun and very easy.  I think it will really motivate me.  Maybe, it will help you, too.
  • Runnergirl
    Runnergirl Member Posts: 4
    edited March 2009

    I've been using Fit Day for several months and it is really a great help. It showed me I was eating too many carbs and not enough protein. Since making that change, I've dropped a few pounds. And, whoever said "eat one Lean Cuisine a day and then all the salad you want", ought to be popped in the nose! What bad advice. Eat lean proteins and fruits and veggies and salad. Try to keep all refined grains from your diet (white bread, pasta, refined sugar) and stick with WHOLE grains but keep those at a minimum, too. Always have a lean protein with every meal. AND... if you use regular salad dressing, those salads are not going to be healthy any more. Use rice vinegars and favorite seasonings and herbs... they are more tastey anyway.

  • Blue-Heron
    Blue-Heron Member Posts: 1
    edited March 2009

    I completely agree with runner girl's comments...  I've been to a number of nutrition classes and spoke to a naturapathic doctor since completing Herceptin in December and when I asked about how to lose the 13 lbs I gained during chemo + Herceptin (and I'm taking Tamoxifin now), I was told the only healthy way for me to lose the weight is to completely cut out refined carbohydrates  (ie. white rice, pasta, refined sugars, cookies, cakes).  Those are the calories that can afford to go because they have no nutrition.  I also found out I wasn't getting enough protein, which is essential to combat fatigue and help w/ cellular repair (and improve my peeling fingernails).  5 servings of veggies/fruits per day is essential to reduce our risk of recurrence and we should go heavy on veggies and a bit lighter on fruits as they have more sugar, which will also contribute to weight gain.   I was told to check ingredients on labels... avoid anything with more than 5 ingredients listed (the least processed the better), and especially avoid trans fats and partially hydrogenated oil and fructose corn syrup... those contribute to inflammation and lead to disease..  I have lost 4 lbs and have 9 more to go.  It's hard!!!  I also walk daily and am taking an exercise class at the YMCA.  Good luck to all of us! :)

     PS... one other interesting thing I learned from my nutritionist is to avoid *low fat* products.  During the *low fat* craze diabetes and obesity have skyrocketed.  She says we need the fat in whole foods as that is what signals to our body that we are full and feel satiated.  For the first time in my life I am buying whole milk and full fat yogurt, and now I'm losing weight.  Also, some vitamins are fat soluable, so we need a bit of fat with our veggies to absorb the nutrients in them. 

  • orange1
    orange1 Member Posts: 930
    edited March 2009

    I too have gained a lot of weight even though I exercise very consistently.  But I was done with Herceptin in September and am still gaining!  I have wondered if the weight gain is due to chemopause.  I have a coworker that had a hysterectomy along with ovaries taken out (for precancerous uterine issues) and is not doing hormone replacement because her identical twin sister has had breast cancer.  She has gained a ton of weight.

  • britbaby
    britbaby Member Posts: 95
    edited May 2009

    Hello...I have been having a lot of problems with weight gain, my Dr seems to think I should just watch what I eat duh!!! Like I don't know that. I have been reading some of your posts and see I am not the only one with this issue.... Herceptin, and I also read you seem to be only on it for a year, I have been on it now for 16months and gained 30lbs, no matter how little I eat or how much I exercise it won't budge, I am not sure why I am still on this drug still for this long, will have to see why, i have gained all this weight around mid and upper section of my body, I look like the michelin man, it's gross, anyway I am glad I looked in here, will be on Dr's case now I know I am not the only one....

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

    http://www.oncologystat.com/index.html   ipursuit this is a great site, it's called Onocology Stat and  they have all kinds of studies on herceptin and other drugs, you can sign up with a user name and password and it will give you all kinds of information on so much.  I go to it alot also when your sign up they send you emails as well at least three or four a week and I always go to breast and then the search engine.  It has many oncs and lots of studies and information about whats new.  Good luck and I hope you enjoy the site. I certainly do, and have learned alot.

  • tooyoungtohavebc
    tooyoungtohavebc Member Posts: 779
    edited May 2009

    Yep fat and now getting fatter. I am doing the herceptin clinical trial -TDM1. I also exercise at least 3 days a week and in past few weeks have gained some weight. Also notice my face seems puffier and fatter. So lovely! And yep also tummy is bigger.

    I just love cancer drugs..NOT!~

  • Lhall
    Lhall Member Posts: 51
    edited May 2009

    Hi I'm glad I'm not going crazy. My Onc. Is telling me it's not the Herceptin putting weight on me. It's the chemo .He just told me to watch what I eat. Well I only eat one meal a day and not much when I do that. I am getting Herceptin every three weeks, I'm wondering if it would be better getting a low dose every week cause when I was doing Taxol and Herceptin I didn't seem to be gaining weight but now that I'm just doing Herceptin with a full dose I'm gaining. And it is just in my stomach. Is anyone during a weekly treatment? I don't know if that will work.

    Thanks Lhall

  • Dodi36
    Dodi36 Member Posts: 1
    edited May 2009

    I started treatment 2 years ago - chemo, op, radiation and then a year of herceptin and am on tamoxifen too.  I was 69kgs and quite fit when I was first diagnosed, went to the gym 4/5 times a week, ran, cycled, rode horses and have a healthy non-meat eating diet.  I finished the herceptin in Jan 09 and have just had my ovaries removed (last Friday) and now weigh 80kgs.  I have continued working through all my treatments and have tried to eat sensibly (hard when youre head is stuck down a toilet for most of the day when having chemo!) but the weight piled on during last year, all the consultants I spoke to said it was nothing to do with the herceptin - but the fact that I was going through the menopause (zoladex injections monthly).  I expected to put on a small amount of weight due to the fact I havent had the energy to keep my gym visits up but am really depressed at the amount I have managed to gain.  Now after having read other peoples reactions to the herceptin, perhaps my weight gain has been for the same reason!  Im now planning to start exercising in earnest after recovering from my latest op - so hopefully the weight will start to go....fingers crossed!

    Does anyone have any natural remedies for hot flushes/tiredness symptoms from the menopause that work?

    Cheers! 

  • love2canter
    love2canter Member Posts: 5
    edited May 2009

    I am so glad to see this thread! I work out almost daily as well and have maintained my same weight, shape and muscle mass for years.  I just started Herceptin in January and have steadily grown larger around the middle.  I am keeping my weight somewhat controlled by getting more militant about what goes in, but the increase is getting really scary!  I've probably gained two inches in my waist and my thighs are huge.  I'm just glad to know that it's possible that it's the Herceptin rather than a permanent metabolic change.  Are there more stories out there about the weight/bulk coming off once the Herceptin is over?  (It's interesting how many of these side effects we experience that the oncologists won't admit to, eh?)

  • Mocity
    Mocity Member Posts: 451
    edited June 2009

    I will be on Herceptin until Oct09 - one year.  I finished chemo in Jan09.  I have gained about 20 pounds through this ordeal.  I am cutting portions now and just started exercising again.  Does anyone know if when you stop Herceptin some of the weight will come off?  I have never had much belly fat and now it is in full force! 

  • Brenda_R
    Brenda_R Member Posts: 509
    edited June 2009

    I must be the odd one out. I didn't lose any weight on chemo, even though I could barely eat anything. But on Herceptin, I lost 35lbs. My GP even commented on the weight loss. She wasn't thrilled, even though I could afford to lose lots more.

    After Herceptin I rapidly gained it back. I felt like I was starving after I finished H.

  • Sassa
    Sassa Member Posts: 1,588
    edited June 2009

    Brenda,

    You are not the odd one out.  I lost weight during chemo (no appetite) and continued to lose weight throughout my year on herceptin (a total of about 35 pounds which I could well afford to lose).

    I am still working om losing weight.  It is just more difficult without the herceptin.

  • Brenda_R
    Brenda_R Member Posts: 509
    edited June 2009

    Thanks Sassa. I wonder why it affects some of us that way?

  • Linda_from_NewJersey
    Linda_from_NewJersey Member Posts: 5
    edited June 2009

    I lost a considerable amount of weight (about 50 lbs). 

    My treatment was:

    Adryamycian + Cytoxan - once every 2 weeks - 4 treatments total.

    Taxol -  once every 2 weeks - 4 treatments total.    Herceptin was started with Taxol. I had 52  weekly treatments.

    Within a month or so after finishing the Herceptin, I gained 25 lbs in 3 weeks.  I was diagnosed as having hypothyroidism.  I am now on synthroid.  I have not lost the weight.

    I am eating MUCH LESS than when I was on Herceptin. When I was on Herceptin, I could eat a lot of food and not gain weight; in fact, no matter how much I ate I couldn't stop losing weight.  I was done to 110 lbs.

    I suffered terrible anxiety while on Herceptin that was not helped with any drugs prescribed by a psychiatrist. 

    In retrospect, I think the anxiety was caused by the Herceptin.  The anxiety started about 3 weeks after starting the Herceptin and started to go away about 3 weeks after I finished treatment.

    Has anyone else suffered anxiety as a side effect? 

  • Mocity
    Mocity Member Posts: 451
    edited June 2009

    I too am gaining and gaining.  I finished weekly Taxol+Herceptin Jan09 and will take Herceptin every 3 weeks until Nov09.  My Onc said it isn't Herceptin related and to watch what I eat.  I always have gained more in my legs and butt but now it is alot of stomach and arm fat.  Does it ever end??

  • Mocity
    Mocity Member Posts: 451
    edited July 2009

    Ugh, still gaining and wondering if anyone would chime in on whether they could tell a difference (some weight loss) after the Herceptin was completed????  HELP!

  • TheresaMac
    TheresaMac Member Posts: 20
    edited July 2009

    Hi, I am new to. I have a question for you all. I get Decadron and benydryl with every herceptin treatment every week......I thought everyone did. They don't? I thought the Decadron which is a steriod was the reason for the weight gain. HMMMMM  go figure.

  • Mocity
    Mocity Member Posts: 451
    edited July 2009

    I got a steriod and Benydryl with the Herceptin when I was also doing chemo (Taxol).  Now chemo is done and I get Herceptin every 3 weeks.  Once the chemo stopped so did the steriod and benydryl.

  • Kitzey
    Kitzey Member Posts: 1
    edited September 2009

    I had Her2/neu+ Breast Cancer in 2003, and had a double mastectomy, albeit a year apart.  I was 36 when I was diagnosed.  I also had a complete hysterectomy.  When my cancer came back, they had just released Hercepting out of trials, and I was put on it in 2005, and they removed my lesion a month or so after.  I've been on Herceptin ever since.  Every 3 weeks I go for my treatments, and its Herceptin only.  My normal weight was 135, even though it was a little too thin, thats what I had been, with the exception of going thru chemo (ACT) and I lost some.  I got back up to my normal weight, and as soon as I went on Herceptin I kept gaining.  I'm now 200 pounds and totally disgusted.  I work out 4 to 5 times a week, and I know thats working because I dont float in the pool anymore, I sink like a rock from all the muscle.  I quit drinking, I eat healthy anyway, but I wrote down everything that entered my mouth for 2 months, and the nutritionist w2as dumbfounded.  My Onc thinks its my diet, and thats b.s.  from 13 to 38 I was always 135 give or take 5 pounds, but I always was thin.....now I dont know what to do.  My cancer already came back, so I am stage 4, and if I go off Herceptin, it will most likely come back, and living with that fear, which I still live with anyway is too much.  Also, much like the others, I have gained weight in my upper body, my butt too, but I had a tram on one side, and because I was so thin at the time, they werent sure they could do it, so I had a very small B.....my real breasts were a full C.....now because one side is a tram and the other is an implant, I have a DD on one side and a small B on the other.  Ive had too many surgeries to have it fixed.  I also have anxiety, but I had anxiety disorder to begin with, then add to that a month after my dx my father died, and mom died 3 months after that, and they were in their early 60's!  I'm a newlywed and I would really like to find a solution to the weight gain....I prayed for it to be my thyroid, but no such luck.  I dont know what to do and it is making me extremely depressed about my appearance when I used to feel pretty good.;....It's bad enough I got this disease but to add this on top of it just stinks....

  • mthomp2020
    mthomp2020 Member Posts: 1,959
    edited September 2009

    Another weight gainer here.  I initially lost weight after I was first diagnosed, but mainly because I was more careful what I ate, and cut back on drinking beer.  I lost about 15 lbs., and felt good.  After I was on Herceptin for a while, I gained it back, and more on top of that.  I've managed to lose a little bit of it, but not much.  And it's mostly around my middle and my thighs.  I don't eat that much.  I am now also hypothyroid, so I'm sure that doesn't help.  I really didn't start gaining weight until I started the thyroid medication.

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