Herceptin Side effect - weight gain?

yorkiecrazy

I finished my Herceptin at the end of August 2006. I lost while on Chemo, but gained on Herceptin.

It has taken me 3 yrs to loose the 25 pounds I gained while on Herceptin. I was eating right and doing exercise but nothing worked and then FINALLY in February of this year it started falling off.

My weight gain was also all in the middle.

JGrim

This thread prompted me to include a piece on my website (cancervacation.com) about herceptin related weight gain.  I posted a new thread about it since I thought that was more accurate, but also wanted to mention it here.  I really wish people were more aware that treatment related weight gain happens so frequently so we could treat it as we do baldness and other appearance related side effects.  I really didn't want to shoot puffy-steroid-face, rolls-of-back-fat photos and post them on the internet, but I think people not ever showing photos like these is part of the reason women think that they're the only ones gaining weight like this and it's somehow their fault.

lilli

I am so happy I found this post.  I have gained at least 20 lbs since I started Herceptin.  I get it every three weeks and unfortunately will for the rest of my life.  I hate the bloatiness and belly that I now have.  Has anyone found that vigorous excercise helps?  Does the weight gain level off at some point?

So happy I found you, I felt so alone.

janincanada

Hi:  I'm glad that I found this post too.  I finsihed Herceptin last July.  I have gained about 25 pounds since I started Herceptin.  I have been exercising a lot (59 hours last month).  A lot of Yoga and a crazy racketsport called Pickleball.  I have gotten most of my muscle mass back and the main area to work on is......you guessed it....the belly.  It is a lot smaller than it was since I started the exercise.  I have lost volume, but minimal weight.  It is encouraging to read your stories as I thought I was going crazy.  Why with all of the exercise am I not losing.  

ltyler

I have a close friend who is mid-way through her herceptin treatments and has gained 50 lbs.  I just completed my last herceptin (16 weeks---weekly with T,Cytoxene and then radiation and every three week herceptin).  I have been able to keep exercising, but have definitely noticed a change in my body composition--fat belly.  I workout with a trainer 3 days per week, cycle, treadmill and also run...but this last 5lbs won't go away.  My friend is a wreck, as she has both the weight gain and pain when she walks.  Does anyone have a good second opinion oncologist for her?  Our doctor seems to be uninformed on this topic.  Also, how long does it take to get rid of the last few pounds? I am on a very vegan diet and have reduced my calorie intake in an effort to get rid of the weight.  Any help would be greatly appreciated!

LoriR

OMG - once again when I am feeling alone in this whole thing I find comfort on this site.  I too am a runner and have been desperately working out and watching what I eat and crying on the scale and watching the measuring tape grow around my waist.  I too have been made to feel like I am crazy and that it is my age (43) and not herceptin that is the problem.  I gained about 10 lbs since chemo stopped and been getting just the herceptin and yep, it is all in the belly.  My waist has grown 3-4 inches since July '09 when chemo ended.  I am so glad to know that there is a REASON for and too would love to hear more post herceptin results.  I have two more treatments and can not wait to see how I make out after I am done.

Mocity

I agree!  It always helps to hear others going through th same thing.  I finished a year of Herceptin in Nov09 and have been seeing a personal trainer ever since.  I have about 25 pounds to lose and it wont budge.  I don't understand it.  I am taking Lupron shots every week to keep me in menopause since I am 38 years old.  The doctor just tells me that I need to watch my diet better.  I feel like I am pretty good with my diet and the exercise but nothing changes and I am too heavy.  :-(

CinCan

I finished Chemo in March and had my first triple dose of Herceptin on Friday... I am now getting Herceptin every 3 weeks instead of weekly.  I'm not exercising due to achy, achy joints from my waist down to my knees and being fatigued.  The most madding of all is the weight gain... I gained 10 lbs. After reading all of these posts, I better start exercising and, if at all possible, take control of this weight gain.  I will be on Herceptin through December of 2010.  This really has me worried as the weight gain is very depressing:(

janincanada

It's starting to come off!  YEAH! I'm not dieting, just trying to eat sensibly and healthy. Not too hard for me as I can't eat wheat so most goodies are out and I have gallsotnes that act up it I eat too much fat.  My weight hasn't changed much, but a lot of that is due to increased muscle.  The big news is that the belly is starting to recede.  I notice it in Yoga and in how my clothes fit.   Bending over to touch my toes is easier......less belly.

For those of you that are currently on Herceptin I did Yoga during chemo.  It really helped me with my attitude and energy. The gentle stretching and strengthening helped with the bone aches.  I started at our local Hospice who had a Wellness program just for cancer patients/survivors/caregivers.  It was run by a BC survivor who was also Her2nue+. I liked it so much that as I developed more strength I started taking classes at my gym.

Love to all of us as we deal with this frustrating side effect.

Joyswain

I've been on Herceptin for 8 months. I am develoing a real tire around my middle despite walking and being very active. I don't like it but I'm pleased Im through the chemo and radiation.I have another 4 months of Herceptin so will be really waddling then. I do hope it comes off quickly when everything is finished. I also have joint pains and peeling nails. My oncologist also says that the weight gain and joint pains have nothing to do with the Herceptin. Best wishes to all fellow travellers.Keep smiling

Lilah

I too have gained weight since finishing chemo and while continuing on Herceptin.  I lost around 12 pounds on chemo and since finishing Oct 9 I've just gained steadily and now have gained it all back.   I'm now fighting to not gain more but am not succeeding (am a few pounds heavier than when I started)... I am probably eating more now that I'm done with chemo (food tasted horrible when I was on the chemo and that coupled with some other SEs contributed, I think, to my weight loss).  Anyway,  I was so happy when I lost weight as I've always struggled with it -- so now I am not a happy camper.  My hands also feel sort of swollen -- as if I'm retaining water -- and this is worse at night than in the morning.  Not sure what that's about but wondering if this notion of water retention is right... I haven't really complained much to my doctor but it bothers me (my rings are tight and these are rings that were NOT tight before BC... before I lost weight on chemo etc).   Also my knees ache and in general I'm not feeling as spry as I was before chemo... granted I don't exercise much but then I never really did.  I do walk a lot though...

Anyway I guess what bothers me most aside from the weight gain is this feeling of tightness in my hands/fingers when I make a fist...which just doesn't seem normal to me. 

Thanks for sharing your experiences ladies!

LoriR

Lilah - it is amazing that all of us have such similar SE but when we talk to Doctors about them - they act like we are "crazy" (at least mine does - don't want to speak for yours:) ) I am just about to the point that I don't even bother telling him about SE because he doesn't say or do anything about them.   I too have the tightness in my hands when I go to make a fist - espcially in the Mornings - I feel like I am 86 instead of 43 when I get up in the mornings.  I can barely move - everything hurts!  After 4 months of telling him that I had some tightness in my chest and swollen ankles he finally ordered another MUGA scan - came back that I went from 53% to 45% LVEF.  How pathetic is it that my first thought aside from what is happening to my heart was "SEE I TOLD you there was something wrong!  In any case I had 16 Herceptins and now ONc is stopping it so I won't have last two - We will see if any of these SE start to go away or if they are tamxifen related. 

Lilah

Lori -- wow -- I actually saw my ONC in March and didn't say anything about it (because it seemed minor at the time and didn't want to complain).  Now I think I will call this week and see her.  I had my last MUGA in February and it was fine... but I am pretty sure the tight feeling in my hands started after that.  Did your ONC say whether he thought the tight hands feeling was related to the lowered heart LVEF?

LoriR

Hey Lilah - No I don't think the hands had anything to with the  LVEF changes.  I re-read my post and I did make it sound like that but what I was trying to say is that I had different random things going on and no one seems to be listens- The LVEF changing is at least validation that I am not crazy

Beach

Lori - I just wanted to chime in to let you know that you're not alone and you are definitely not crazy!!  I finished chemo by the end of June, radiation the end of Aug and today I had my second last Herceptin.  I have been complaining about stiffness in my feet, legs, hips and hands since the middle of August and still everyone just scratches their head and shrugs their shoulders.  I'm 46yrs old but have felt like I'm 90 for the last 8mths and exercise actually makes it a little worse.  These issues are new for us and we know our bodies, so they must be real........right??  I just stop telling them now and hope one day this will all be in the past.  Take care and sending gentle hugs your way ((( )))

Sandy

Lilah

Ah ok Lori -- thanks for the clarification!  I did go ahead and make an appointment with my ONC... who will probably scratch her head

janincanada

Just wanted to let you know that my Onc. took tightness in my hands or feet seriously and booked me for a muga.  She opinion was that the tight feeling preceeds visible swelling which could be an indication of LVEF changes.  Her opinion was that it was best to check it out and catch any issue early. 

On another note, I will have been off herceptin for a year in July.  Joint pains are basically gone, just left with first of the morning stiffness which is probably age-related not herceptin. Nails are still weak, but getting a bit better.  I miss my durable, hardly ever break nails.  My hair still grows slower than before, but since I have the style I want it saves me money on cuts and highlights.

Most importantly though, through exercise and healthy eating the BELLY IS DISAPPEARING! I've been doing Yoga and cardio for quite a while, and gained muscle tone but not much weight disappeared.  Tlhe belly started to go......not fast enough.  Then a week or so ago I added regular walks in the evening, not power walks but faster than a stroll.  We go for an hour or so.  This moderate exercise seems to be targeting the fat as I have lost 2.5 to 3 lbs.  I hope it continues.

Good luck to all of us.

lovemygarden

Question for those who had the Herceptin weight gain: Were you all on the 3-week Herceptin-only schedule when that happened? Because I'm now halfway through my 12 weekly Taxol/Herceptin phase, and have only gained 2 lbs despite stuffing myself with more pasta and baked goods than I would normally eat.

I'm planning to ask my onc to change my Herceptin-only gameplan from the 3-week dose to the continued weekly dose. I already several very important-to-me reasons for that, but if weight gain is something that also occurs with the 3-week dosage I will add it to my "pitch list"!

Lilah

I'm on the every 3 weeks dose and definitely have gained weight.

LoriR

I too had Herceptin every 3 weeks and I definitely gained weight.  about 8 pounds.  NOw that I am officially off of it - I can't wait to see if the weight will come off- I run 4x/week and do yoga 2x so it is not that I am not active.

Janincanada - thank yo so much for your post - now I wonder if my tightness in my hands is not tamox. related but LVEF related?  I have one other symptom that I kept telling the doctor about and he kinda rolled his eyes -  whenever I get hot my hands and fett feel "prickly" or itchy.  I even said to him "do you think that it is a symptom of my blood not pumping as good - he didn't think so but I am guessing it is 

janincanada

I did the 3 week dose too. 

carol0411

I, like everyone else am so glad I found this post.  I have beat myself up for the past couple of months because I couldn't lose the 15 pounds + now I know why.  I thought I was going crazy because my onc. keep saying that I had to cut calories and exercise more.  I have done that and still nothing.  I also didn't know why my nose ran all the time and why I am so tired.  I used to work 2 part time jobs and a full time job...now it takes all I have to do the full time job. I will be done in Aug.with Herceptin, so I guess we will see....

LouLou40

I only have 2 more Herceptin infusions left.

I put on 11 pounds during Chemo ACTH, all during the weekly Taxol.

I am now back to 121 pounds my normal pre BC weight, I haven't changed my diet, just more active now I'm back at work full time and running around after 3 little ones.

The only SE I have suffered with the Herceptin is feeling a bit "off" the next day, but not enough to slow me now. I also take Arimidex as the Chemo sent me into menopause and I don't have any issues with joint pain or stiffness, life is really back to normal now and my weight has returned to my normal range.

LL

janincanada

The weight is coming off.  I weighed myself this morning and I've lost another 2 lbs.  Super active, exercising a lot and watching what I'm eating but not dieting.  I hope the loss continues.

bethanybeane

Has anyone had an "unrelated" chest x-ray show "something" on the lung? Does radiation leave its mark? Do know that the apex of my right lung was clipped by the treatment and that's where the questionable image is. Am going for MRI with and without contrast and CT scan tomorrow. Trying to talk myself out of being terrified. ~ Bethany

Maisey01

I have finally dropped 11 lbs!  Gained nearly 30 while undergoing treatment.  Nearly 2 1/2 yrs after herc I have finally lost part of the weight.  I am on arimadez so I don't know if the other half will be part of me forever or not.  The only change in diet is more fruit. 

debbiedink

Well, I have to say this site has made me feel so much better !!! I've gained about 10+ lbs since starting chemo (did 4 rounds and stopped, now only doing Herceptin every 3 weeks till Nov) but ALL the weight is in my stomach !!!! Keep buying "fat" pants as my shape changes often, was going to get rid of all my clothes but if there's any hope of getting rid of this preggo looking tummy I'll keep them. Been off chemo since Feb and still have side effects, assuming now that they are from Herceptin...drippy nose, weight gain, finger nails are now a problem, joints hurt, do have a decrease in heart function according to Muga scan in March, next one is in June, another decrease and might be off Herceptin and try something else...roller coaster with all the drugs. If there's anything I can do for the weight problem I'm open for suggestions !!!

Sassa

OK, Ladies, I don't want to be accused of promoting something so for all of you that are complaining that:

You have gained weight and it is around your middle; and,

you are exercising to no avail; and,

you are watching your diet and you can't lose the weight,  google "metabolism miracle" and Diane Kress.  You may find an explanation for your problem and a solution as I did.

 Mary Jo (metabolism B )

ctinas

Well, I have one more herceptin treatment left, tripple dose May 28th. I only hope that the 32lbs that I have gainedin the past year will start to come off. It's just nice to know that I am not the only one.

Thanks, Tina

waialuawahine

It is so nice to know that i am not the only one who is feeling like they have gained weight. I  don't eat anymore than i used to but seemed to have put on 15 pounds. I hate this wieght that i am at. I used to be a body builder and now it seems that anything that i do will not get rid of this excess weight,.I just feel so bloated all the time. Does anyone have a remedy for this? Help I can't stand the extra weight!