Inability to lose weight while on Herceptin

Hi all

Was just wondering if anyone else has had problems losing weight whilst on Herceptin? I finished my chemo in Feb and so far had 7 doses of herceptin however my weight does not want to come off despite dieting and exercising! I go swimming 2-3 times per week and eat very sensibly and my portions are getting smaller and smaller in a desperate bid to lose this weight. I put on 2 1/2 stone by the time i finished chemo and thought that by now it would at least show signs of shifting but have been wondering if its the herceptin that is keeping it on!

Although i am very grateful that i am still here (and hopefully will for a long time to come!) i feel very guilty for getting depressed about weight but i just want to go back to normal and having the figure i had before all this mess started!

Helen x x

I sympathise, Helen, I am on my 21st Herceptin and have put on two stone over the past year. I am also still on chemo which doesn’t help. I actually don’t eat that much as I never have much of an appetite. However, unlike you I am an exercise-phobic, so hearing that your excercising has no effect has made me rethink my recent plans of going swimming (told you I REALLY am lazy).

However, recently before going on hols I did manage with some severe discipline to shift 3lbs - nothing to write home about, but some progress. Basically, I avoided bread and pasta which I love, and would only have carbs for lunch, and lots of veg and fruit.

It is so depressing when your dose gets adjusted each time you put on 10% of your body weight. I’ve now increased by 20%. I feel like I’m going to Weightwatchers every time I go for Herceptin and I wear less and less clothes each time! Soon I will be in my undies.

Nevertheless, there is no point in starving yourself, you need to stay healthy & enjoy the culinary pleasures in life. Have you discussed the weight gain with your team? Perhaps they could refer you to a dietician?

xxx

Helen you have given me food for thought LOL!

when I was dx with bone mets I was put on xeloda. It didn’t agree with me at all and I was taken off it after about 8 wks. I lost my appetite and was throwing up and lost about half a stone - my weight fell to 8st. Things improved a little bit on navelbine but as that didnt work I then went on to herceptin at beginning of 2004. My weight now is around 10st and I never thought to blame the herceptin. Thought it was cos i nibbled between meals and did little exercise. People do laugh at me when I say I am overweight so have to confess I have given up worrying about it, seeing as herceptin will be an ongoing treatment for as long as it works for me.

Dawn

It is so hard! I have spoken to my team about it and they all say that gaining weight is NOT a side effect of herceptin but while i haven’t gained weight…i can’t lose it either! Sooooo frustrating! Can’t help but feel really down about it all though!

When I was on Herceptin I was told that whilst it didn’t cause weight gain like the other drugs, most women found they could not lose weight whilst they were on it. I finished it over a year ago now and have managed to lose about 12 lbs in the past 3 months by just being sensible and cutting out rubbishy things. I also find eating from a smaller plate helps along with having a bowl of salad and fat free dressing on the side. I don’t still have a biscuit or some chocolate every day, but I’m managing to limit that too. Wine is purely for a Friday or Saturday night, but only if I really feel like it, otherwise I don’t bother. A big help for me is that we grow our own veg and salad in the back garden, so there is always something healthy on hand.

I have been told that I shouldnt worry about trying to lose weight, just try to maintain it. I have put 2 and a bit stones on and just bought some baggy stuff cheap and 2 really nice posh bits size 18. My nurse at home also told me to snack on fruit and low fat fruit cake, similar to bran loaf when on chemo. I have kept to same weight now for 3 mths. no 5 load just gone. Too tired to do much excercise just make sure i have a walk every day.