Herceptin Side effect - weight gain?

LoriR

it has been almost 3 months since I had my last herceptin (3/31) and I guess I am sorry to report that there has been no weight loss to date!  I work out and dont eat that bad and yet nothing.  The only real improvement to the SE since I stopped the herceptin is that my nose dosen't drip any more.  The weight, the mood swings, and messed up nails,the sore joints seem to all be hanging around and so I have nothing else to think than that it is the tamoxifen and not the herceptin - which can be very depressing knowing that I have 4 1/2 yrs left of it- grrrr!  I hate this

snowyday

I am a year off of Herceptin and my stomach is still huge, I eat very lightly can't eat alot my stomachi can't take it, but it's still huge.  I am now taking Effexor for depression and have been more active, but my belly remains large.  I read about a women who finally dropped the belly three years later.  I can feel my upper ribs again and my hip bones but belly no change.  This is so hard to deal with and finding clothing to fit and not show my belly is so annoying,  I suppose we must wait.  But I have told the FDA about this and I treat it as a big side effect of Herceptin.

janincanada

I finished herceptin last JUly and the weight is comiing off. I've regained most of my muscle mass (my BMI is now just under 25). I've lost most of the belly and just tried on my target capris that wouldn't even zip before. They zip and are comfortable. No diet, sensible eating. I usually have a protien shake for breakfast cuz it is easy. Lots of exercise, yoga to get my muscle mass back. I haven't been cleared for weightlifting due to recon but yoga was approved. I do it three times a week. I play racketsports 4 times a week, and run 7.5km 3 times a week. I also try to walk. It has been difficult to lose the inches. I have only lost 13lbs. but lost more fat as I have put muscle on. It has taken a serious committment to get here. I still want to lose more flub from around my waist; I'm not there yet, but getting close.

MaiTai

I'm so glad I googled the words herceptin and weight gain:-) As most of you I thought I was crazy.

I gained around 10 kgs (11 lbs) after chemo. I thought it was tamoxi related.

Now i believe it is both the harc and the tamoxi.

I managed to stop the weight gain but even on a 1200 calories diet and 4 times a week exercise, I'm not able to loose a gram.

Looking on the bright side that I'm not gaining. Maybe on October after I finish with the herc, I will be able to loose the weight.

Incredible that the doctors let us feel like we are doing something wrong...

IowaSue45

Wow after reading through these posts I am dreading the treatments that I will be receiving in the future.I have a young (30s) oncologist and I'm hoping she will have some compassion about this and help me through this, I am already 15lbs heavier then I want to be, 10 of which has been gained in the last 5 months prior to being diagnosed. I was searching the internet for info about treatment to see if what they told me I needed for treatment was standard protocol for invasive ducal carcinoma her2neu+3. I just had a bilateral mastectomy July 1st and in 3 weeks I start radiation for 5 weeks then chemo and Herceptin. I stumbled on this page and now I'm really wondering if the side effects are worth taken the herceptin. So if anyone can give me feed back about  what treatment they received for this same diagnosis I would appreciate it greatly. Thanks, Sue

Lilah

Herceptin side effects are not as bad as chemo   And you need both for HER2+ -- it IS the standard protocol right now.  WHICH chemo you have is variable (some protocols are more standard than others) but I would say it is worth it for you to take Herceptin. 

Some of the weight gain we experience may be from chemopause ladies... I lost weight on chemo (about 15 pounds and gained it back plus 5 after chemo but while still on Herceptin).  I had trouble losing weight at first but now have lost 7 pounds and am still on Herceptin til September.  I understand from others who are off Herceptin now that the weight loss gets easier once you are done.  I also get crusties in my nose, which may be from Herceptin but again may be lingering SEs from chemo.  The joint aches I have also MAY be from Herceptin but may be lingering effects of chemo (taxol to be specific) and, as well, can be related to the changes my body is experiencing from chemopause.  I think it's difficult to know since most of us are given both chemo and Herceptin (and many of us also are thrown into menopause by the chemo). 

I for one would never consider NOT having Herceptin.  It greatly reduces the chance of reoccurence (from what I've read) especially if you are Grade 3 and also receiving chemo.

I had AC dose dense x 4 followed by Taxol dose dense x 4; my Herceptin every three weeks (for one year) started with Taxol.  September will be my LAST Herceptin and I look forward to being done.  I've never had any issues while receiving Herceptin transfusions (I think allergic reactions are somewhat rare) and as noted above my lingering SEs since chemo are minor. 

weety

slogan44, I agree with all Lilah had to say, and as my onc put it, there are NO nice guys when it comes to HER2+ breast cancer.  HER2+ is aggressive by nature, and herceptin has been called the miracle drug for it ( but of course, as with all chemos/treatments, it doesn't always work for everyone) The HER2+ early-stage cancer had 30% chance of recurrence WITHOUT chemo & herceptin.  Now, WITH chemo & herceptin, the recurrence rates are down below 10% for stage 1.  I would never skip out on this improvement chance, unless of course, there was some other reason I could not handle the chemo/herceptin (health issues, allergies, etc)  Chemo was doable, not fun, but doable, and herceptin is a walk in the park compared to the chemo.  The side effects we all complain about are there and they are real, BUT, for most of us they are inconveniences and subtle bothers, not huge problems in our daily lives.  Hope this helps.

MaiTai

I completely agree withLilah and weety.

The risk is to high if you are HER2 3+ without the Herc.

I wa\nt to give hope to all of you, though. Since I wrote my previous post (4 days ago) I suddenly lost 2 lbs. I guess something moved:-)

Lilah

Yay Maitai!

IowaSue45

Thanks Ladies, I guess I am still in shock that I have to go through this was just diagnosed June 18th two weeks later had a bilateral mastectomy which I dealt with quiet well. I have always been anti medicine rarely taking anything so it is a little hard to digest having to put a whole lot of crap in me to get through this and I do realize I have to do it. Just curious if anyone takes extra vitamins, minerals or herbs on top of treatments or if anyone one has heard of flora essence tea?  Another thing I was wondering is if the usually do blood work up or how do they test to see if you have cancer floating around in your blood, they tested my lymph nodes to see if there was cancer there and I have read that it can spread via lymph or blood but I have not had blood lab work up yet, maybe the oncologist will do that when I see her? IDK so many questions. Thanks again, Sue

Lilah

Slogan -- my Oncologist forbade me from taking any vitamins or supplements while on chemo.  She said that studies had shown that some of these can reduce the effectiveness of the chemo.  So this is something to discuss with your oncologist.  I'm guessing that since you're still healing from surgery you haven't taken that step yet? 

Also my Oncologist draws a little blood every time I go in for a transfusion (it's just herceptin now so every three weeks) to make sure my white blood count, red blood count and a few other measures are in line.  Then every few months she takes a larger blood sample and runs more extensive tests, including a test that looks for cancer markers (can't remember what it's called); this is something else to ask your oncologist!

writer

I just discovered this thread, and I guess it both makes me feel better and worse. My weight fluctuated wildly during chemo-- up and down 6-8 pounds every cycle-- but in general I lost. Now I'm 6+ weeks post-chemo and on Herceptin and Avastin, and the scale is going up so fast it's making my head spin. I'm exercising almost daily-- walking, pilates, gym-- not eating perfectly but not going wild, either. I'm assuming it's partly chemopause/menopause (I'm 52, was not fully menopausal when this all started but was in process) and partly my body fighting to get back to my pre-diagnosis weight, which I DON'T want! But maybe some of it is the Herceptin. That hadn't occurred to me.

Oh well, I guess there's some South Beach boot camp dieting in my future. What a bummer, after all we've been through. It's not fair, is it?!

Lilah

Hang in there Writer -- it gets easier.  I too lost weight on Chemo then gained back after I was done.  Have three more Herceptin to go and find it is easier to lose weight now... so whatever the reason (reaction to going off chemo, Herceptin or chemopause -- or maybe all of the above) it seems that the further away from chemo I am and the longer into the chemopause the more the body is getting used to the new normal and losing weight is not so hard; not only has the gaining stopped but I've lost 7 - 9 pounds in the last 6 weeks (depends on the day -- pushing for 10!)

writer

Thanks, Lilah, that's very helpful. As long as I stabilize I'll be okay. 

SeanE

It is my understanding that most chemo regimens cause weight gain, due to the premeds administered to reduce SE's, which often include a steroid.

If you are receiving your Herceptin with such a premed, that would explain the weight gain.  Dexamethasone is the one most often used - not sure if it is used with Herceptin or not, but was used on all my wife's chemo treatments.

Lilah

I lost weight on chemo, I think because I had diarrhea (pretty much every day) PLUS food just tasted bad (an effect of some SE or other I guess)... oh if only I could eat less NOW  

For whatever reason the dexamethasone I took with chemo did not cause me to gain; I stopped taking it once I stopped the chemo.  Do not receive any pre-meds on the Herceptin.

still-kickin

10 lbs nothing try 50 with no hope in sight. I have to stay on herceptin every 3 weeks for ever.She told me it was the steroids I was on during chemo.

My doc says I'm blossoming I said blossoming Hell, Im in full bloom!

skobili

I am a triple positive stage IIIC breast cancer patient.  I finished chemo with carbo, taxotere and herceptin.  I also had an induced menopause due to the PR / ER + status.  I am now on my herceptin until March, along with radiation.  I too have put on significant weight, more than 50 pounds in less than 7 months.  I exercise and diet but cannot seem to lose.  I have never been overweight.  my nurses and doctors continue to tell me that herceptin does not cause weight gain.  I am seeing an endocrinologist this month and will report any updates on this topic.  This has been the hardest part of the herceptin therapy.  I gained even while being sick on the chemo and not eating at ALL!!!  the weight gain is exactly as everyone has been reporting, all in the stomach, just a large distended abdomen all the time. 

 Can anyone tell me if the weight came off post herceptin or can I expect continued gain as I progress to tamoxifen?

skobili

I am experiencing the exact same thing.  I don't think it is fair that we lose our hair, our self image, our breasts... but we gain weight, significant WEIGHT!!!  could we feel any worse about ourselves?  I have put on so much weight that I am nearly "growing back my breasts"!!  The only positive news is that my plastic surgeon intends to use my belly fat to build my new breasts.... some day, if I get into a longterm remission. 

skobili

I hate this too!!!  I have the constant dripping nose and the severe weight gain and muscle/bone pain while on my herceptin only.  this is so depressing and knowing that the tamoxifen is similar really makes me crazy.  I will be on tamoxifen for 10 years.  makes me wonder why I bothered to go through chemo at all.  the weight along with my bilateral mastectomy and my chemo induced menopause are more than I can humanly handle!  the doctors continue to tell me that I need to exercise more and that none of these side effects are from the herceptin???

Mocity

Ugh... I have to agree... I have been off Herceptin over a year.  I think I posted towards the beginning of this thread.  I haven't been able to get rid of the weight despite diet and working out with a trainer for over a year.  I just cant get it to move.  I have always had thighs but never a middle and now have a "tire" around my middle.  I have about 30 pounds to lose.  I try to tell myself it is a small price to pay but I really would like to feel good about myself again.  I dont want to discourage anyone because everyone's experience is different.  We hear all different stories about how things work out.  I will continue to try to get rid of it!!  Good luck to all!

misfit

I've been able to lose weight but it's been a lot of work. I didn't have much luck before my diagnosis even though I was walking every day and watching what I ate. Cardio was the gamechanger for me. It's much harder to lose weight without it. Even if you're just walking, try to walk as fast as you can. I'm not saying Herceptin can't cause weight gain, but I agree that lowered estrogen levels may be a factor as well (due to menopause, chemopause, and/or hormonal therapy). Here is a link to an article that explains some things about estrogen receptors in the brain and metabolism.

http://www.sciencedaily.com/releases/2007/08/070820145348.htm

Best of luck to everyone trying to lose weight...don't give up!

nolongerred

I just finished 12 months of herceptin 2 weeks ago , have had 6months chemo and five weeks of radiation. I have put on weight also YUK! I hate it haven't been this fat since I was pregnant 23 years ago. I have joined a gym and really watching what I eat I don't really want to go and buy new clothes I hate it!!!! hopefully it will come off in time. funny I used to have long straight red hair I now have browny blonde wavy hair!

TammyLou

I don't know why either, but the general story from breast cancer patients is that 35 pounds UP!!! is common.

Herceptin or no.

tl

lago

I have heard typically its 8-10 lbs but many women do put on much more. Some of it might be due to women going into chemopause. This is why the belly fat shows up.

I have gained 12 but I know for sure at least 4-5 lbs are fluid. I lost that much every time I took  decradon. When I stopped the decradon I put on that much overnight. I am also still bloated and my legs are shiny so I know some of this is water gain.

I figure that I have truly but on about 7-8. I'll lose it once I start working out and do more. I know why I put it on. I don't think it's fare for me to blame it on chemo.

stlcardsfan

For me it is the Herceptin or lack of estrogen.

I did not gain any weight all thru chemo. Then, when I went to Herceptin only, I saw the weight start to creep up. I decreased my calorie intact, and increased my exercise but still kept gaining weight.

I am now done with Herceptin and actively working to lose what I gained. So far, the scale hasn't moved in the right way, but I am going to keep on working on it. 

Rubyluby

Have any of you ladies asked your onc or GP for prescription appetite suppressants? Im feeling that desperate. I joined Weight Watchers last night and when I stepped on the scales found, to my horror, that I have gained 10 pounds in the last seven weeks! (I was weighed on December 6th prior to a MUGA scan). Thats just crazy. I didnt go overboard over Christmas. LIke many of the ladies on these boards, I watch what I eat and I do kickboxing twice a week.

Im having my last Herceptin on 10th February, so hoping to see a difference after that...

Hugs and best wishes to you all,

Lucy 

janny99

My doctor started me on Phenteramine to help me lose some of the chemo weight.  Even with the meds, I have not been able to budge on the scale!  I know I need to hit the gym, but I am having a hard time getting motivated to start.  I, too, wonder if it's the 'chemo-pause', the Tamoxifen, or the loss of muscle from going though this whole ordeal that it making it harder to burn calories.

melania

Hi there

I was wondering if anybody had pain in her breast or tumor area when on THC ot Hercceptine????

I am doing chemo before surgery, i did have 4 rounds of FEC and after a chest CT it showed that the tumor is gone , i had pain in tumor area with FEC and i was thinking it 's a good sign of killing the tumor , the onc confirmed that too , now i have to do 6 round THC and weekly herceptin in between and since then i have even more shooting pain around my bad breast (right). Sometimes it's under the breast and its scaring me about my liver , I had a clear pet and ct scan when diagnosed and right after we started the chemo which shrank my tumor , i was thinking may be there are cancer cells in my liver and the chemo is working on them or may be something is growing in there??? I had a chest CT scan couple of weeks ago and that was clear and even the tumor and lymph nodes were clear with no sign of cancer. I just wanted to know if anybody experienced this kind of pain ?

Rubyluby

Thanks, Janny. Ill ask about Phenteramine and see if it helps!

May I say that you look great even with no hair!

Lucy