Wieght Gain on Herceptin?

Hi Everyone: I was just wondering if any of you had experienced a weight gain while on Herceptin ONLY? I finally lost the extra twenty pounds I had picked up during chemo 2 years ago. Had my first infusion of Herceptin and when I went back for my second infusion the next week I had gained 5 lbs. That's a lot in one week! Any info would be great... Linda in Calif.

[Patty H]

I'm on a break from chemo and doing the triple dose herceptin. I thought that I would take some of this weight off now that I feel so good and moving around more and trying to eat well while off chemo, but was surprised to find that I am gaining also. Never thought if it could be the heceptin but I sure don't like it. Patty H

I also experienced about a 5 pound weight gain when I had my first Herceptin infusion, followed by Taxol. The Decadron given for premedication does cause you to retain fluid, but this should wear off in a few days. I haven't experienced a weight gain since my first treatment - the treatment when I took Decadron twice (within 24 hrs) before my chemo. Now I'm given Decadron on the day of my chemo, just prior to receiving Taxol. I have completed 10 of 12 weekly treatments, and have maintained my weight with only slight fluctuations.

I gained back the weight I lost during chemo and rads, and seemed to gain it in the abdominal area. Am I becomming a pear?

Are you all doing any excercise? If anyone is in "chemopause" or menopause, then that is the reason for the weight gain.

I have not read anything about Herceptin being the culprit. Its likely the hormonal changes.

I do not think Herceptin causes weight gain. It is probably fluid from your premeds. I do not get decadron. I just get Herceptin once every 3 weeks for one year and have had zero weight gain.

From what I understand, Herceptin is generally administered WITHOUT Decadron. Unless you present unusual side-effects like allergies (other than weight gain).

I do know that I gained weight while on Decadron, not Herceptin -- at least, in my case. One of my prominent side effects from the steroids was fluid retention. People almost did not recognize me, cuz I blew up like a ballon! Thankfully, I got rid of ~20 lbs over the summer, as I tapered off on Decadron in May.

If you do take Decadron with Herceptin, I would ask my onc or chemo nurse why I have to take the steroids.

The only meds I take with the Herceptin are Zyrtec 10 mg (an antihistamine) (instead of Benadryl because it made me SO drowzy) the morning of my infusion and 750 mg of tylenol 2 hours before treatment ( I get my treatments on Friday afternoons so I can take it easy over the weekend and be ready for work on Monday.) Can't figure out why the sudden weight gain but sure don't want to get back to 150 lbs. !!!!! Linda in Calif.

Linda
Funny you should bring this up...I have been complaining ever since I went on Herceptin, which I am almost at the 2 year mark....I have GROWN....from 126# to 150#.....I am just as active, eat less and healthier and yet the weight...i use the treadmill and exercise bike daily....the only thing I can think of is menopause....or the old middle age spread as my Dad put it. I was cleaning out my closet yesterday...the local Good Will will love me for it...bye bye 6's and 8's...hello 10's and 12's! The onc. assures me it isn't from Herceptin...did put me on Dyazide for fluid, which I have yet to take as I don't seem to have a complete day to just stay home and "pee"! My Dad put it to me in a very realistic way....he said you are still alive, so quit complaining about the weight! Sounds like words from a man doesn't it....maybe I am on my way to plus size modeling!! If I keep this up, I'll be there in no time!
Hugs
Sheila

I'm a woman and would likely say the same thing to you that your Dad did. He sounds like my kind of person (and much like my own Father would have said.)

If you'd gained 50 - 100 lbs. and endangered your health in other ways because of it, that's a different story. Or even if you had to pay for Herceptin yourself and just couldn't afford a new wardrobe, that, too, would be a different story.

It's really a matter of priorities. Just imagine yourself as the weight you'd like to be and make it real for yourself (very doable, I assure you), avoid mirrors, and the heck with people who actually think its more important than a person's mind and soul. People like that are simply not worth a glance back!

[StephN]

Hi everyone -
I seem to recall that we had this conversation on this board sometime over a year ago.
There were a LOT of responses and we were all complaining about getting off chemo and taking Herceptin and gaining weight. We seem to have come to the concensus that hormonal changes, inactivity and metabolic changes were probably more likely to be the problem.

Same with me, but I fight like crazy to hold the line. I seem to be doing that pounds-wise - but my clothes don't fit like before. The weight is shifting around. I have had to buy a few new things, but stay in the same size range - I just hate to get beyond an 8!
I just have to look for different styles than I used to wear ... sigh ;)

Hi Linda,
I definitely think the herceptin I took made me gain weight or at least made it very difficult to lose it. The reason I know is because as soon as I was done with the herceptin treatments the extra weight gain just came off with out doing anything different to my diet and exercise.
I think everybody's body reacts in slightly different ways. Mine definitely gained weight and made me hang on to the weight until I was done with treatment.
Good luck with your treatment. I'm still enormously grateful that I was able to take herceptin. I really think it saved my life so I really didn't mind carrying the extra weight. It was well worth it to me.
Margaret

hi, folks...wake up and smell the coffee,

IN MANY CASES, the herceptin alone can be making us gain weight. I puzzled over this for years...I am still pre-meno, so I couldn't blame it on the "change"... I never took pre-meds after the first couple of doses years ago, couldn't be that...I don't take chemo, I don't take any Rx meds on any regular basis...I walk regularly, eat a fab diet with next to no sugar, so WHAT could iT BEEEE???? How could I go from my svelt 160 lbs ( I'm nearly 5' 10) to my now tetter-totter 188 to 200??!@#%!!!!! which is more than 20 lbs than I was at my heaviest when formerly I was nine months PREGNANT!!!! Plus, since then, they even removed 12 pounds of breast and muscle tissue...so what gives...??? As usual, I sometimes bring to this board a "different" if not universal "opinion" smile...on some of this.

Here is just my take on what I seem to notice going on in my body. Maybe some of you have noticed it too. About 6 hours after the Herceptin infusion, I will start to eat amazing amounts of foods...good foods mind you, but large amounts...even my sister who visited during one of my Herceptin weekends...noticed it and remarked Gee, she never recalled I ATE SO MUCH...embarrassed, I told her that I didn't know why but after Herceptin, I craved certain things --almost as if I were pregnant and felt like I had to eat them. This would go on for the next couple of days and then, poof, I would be eating back to normal. I think over time, your body learns to prepare for the herceptin drill, which internally could be perceived as a giant attack on the body that the body's immune system has to gear uP to take out the "invaders" --the monoclonal antibodies that attach on to the her-2 cells and mark them for destruction. The body somehow "knows" or learns that it has to start pumping out more immune cells to take on the challenge. Suddenly the body goes into this EMERGENCY MODE and starts sending hormonal messages for dietary reinforcements...smile..quaint ...though I know this may appear at first, if you really sit down following your next infusion and write a food diary of what you crave, what you actually eat and HOW much...you might be shocked to see what you are putting away those 3 days just after you might shock yourself. Over time, I have learned to compensate, as I simply refuse to go over 200. Each weekend, I do a mild detox and the WEEK before herceptin I pay attention to portion size and try to walk more. Overall, I have maintained the 188 to 200. as bad as that is for a couple of years now. I did notice in the early years when I was only taking herceptin all at once for 5 or 6 doses that as soon as I stopped, the weight fell off on its own. That was one reason, sad though this is to say, that I did not want to take Herceptin regularly, plus I did not want to be "tied" to it...this later proved to be a bad strategy as most of you now know...as it ended me up with pelvic and bone mets that would have most certainly been avoided if I had stayed on protocol....but still, I squeezed a lot of living into those early years, predominently spent raising my then small son, into big boyhood. He is now nearly 14 and makes me so proud...I call him my "genius boy" as for so many cancer - torn years, his grades were not that great as a single, working mom with breast cancer like her-2, I could not really help him with homework or give him the things other kids had...but somehow, this year (as I have had a great run these last couple of years --especially on the herceptin only every 6 weeks), he pulled 100 percents and high 90's on his major SOL's I was so shocked...as from his ABC grades, you would not have anticipated this...smile...so that is when the nickname was born...his real name is Jordan and no joke, he is a GREAT kid. I am so blessed..., to have died and missed all of this would have been such a loss. Those of us who are still here KNOW, that despite the struggle, it is worth it...and do not despair, even those the sickest among us...have ye but the faith of a grain of a mustard seed and I have a feeling VERY soon something GROUNDBREAKING is going to happen for us all...Best, GP

I ate a plate of baby back ribs after my last Herceptin treatment. When I got home, I was still hungry... AND, I am hungry all the time... maybe there is something to the body wanting for more food "reinforcements".

maria

Yes, Maria,

I find it is quite common...to fuel up so to speak...I think folks don't really know just HOW demanding it is for the body to undergo the herceptin process...first just imagine: As far as your body is concerned, when you get Herceptin, from the body's point of view, it is just as though INVADERS HAVE LANDED...even though these "good guys" merely land on cancer rich lilly pads with cute little her-2 receptors on them that have heretofore gone completely undetected by the immune system. Now that these secret pads have been discovered, it is as if Herceptin TAGS them with a kill me now SIGN and suddenly the fire alarms and emergency whistles go off signaling "we have an invader we have an invader" but to mount the attack..the body must go through a process not so different, sadly, from what the U.S. army had to do to get all THOSE trunks tanks and weapons to IRAQ. What is worse, the immune system has as much paperwork and procedures to fill out as the government...gee, is it any wonder so many of us don't make it...a little black humor there...Finally, once the immune system has gathered the fuel it needs and whipped up batch after batch of new immune cells...off it goes to the tagged lilly pads which now have the big neon signs marked KILL ME NOW blarin... But alas, this is just the beginning of the war...getting there, as we have learned all too well from Iraq, is JUST THE BEGINNIGING, the immune system (and the U.S. Governement) will need enough fuel and energy and "funding" not only to surround each cancer filled lilly pad, but will have to break these "cells" down one by one and then carry the debris out through the digestive tract....this is quite a process, make no mistake...that is why I like to rest after I get the herceptin as the whole thing wears me out....Best of luck to you, Gina