Herceptin side effects

Hi ladies!

I am finished Herceptin 3 months ago.

I am starting to get my energy back little by little.

It is only now that I understand just how debilitating Herceptin was.

I had become so used to feeling so sick that it was normal to feel so awful.


Just been to the doctor today - the side effects take a long time to ease off.

I got a steroid injection in my hip to ease the pain.  My hip and knees just got sore after Herceptin and are bothering me quite a bit.


Yes I TOTALLLY agree that the gp does not understand much about side-effects and would recommend going straight to the hospital team - even after treatment ends.


I still have sore hands and feet, joint problems, very bad digestive problems (gale force wind!!!), weak breaking nails, itchy trunk…etc.


But the runny nose has gone.

The fatigue is improving but I can’t believe how tired I have been.  I still can hardly go for a walk most days.


However things will improve Ladies!   I could never imagine that I would ever feel like my old self again.  But there are times when I do so we are all heading the same direction - forwards!


Keep positive

Aine xx


Hi all, I finished chemo in September last year and have been having herceptin injections every three weeks since with two more injections to go. I’m also taking letrozole daily. I am very stiff and achy, especially after sitting and this seems to be getting worse. As I near the end of my herceptin treatment, I’m beginning to wonder whether it’s a side effect caused by the herceptin or letrozole! Is there anyone on this forum who has completed herceptin and on letrozole? Did the aches and stiffness ease for you? As I’ll be on letrozole for five to 10 years, I’m hoping herceptin is causing me to feel this way!

since being on herceptin and letrozole I found myself really tired and my muscles really achy. especially my thighs and calves, I find it so difficult to even get out of a chair .
My hands get very swollen and the tips of my fingers feel as if they’re on fire. I’ve got till January 19 on the herceptin … please God don’t let me feel this way for another 6 months.

Wales i feel.just like you! I am on herceptin and letrozole too and think.ots definotely been worse since starting letrozole.

I feel very tired after doing tje simples of things. My legs are achey and feel really heavy!

My herceprin finishes dec 2018 xx

Thank you for taking the time to write, your tale has given me hope and reassured me that what I’m suffering from are side effects not something more sinister.
I wish you well.

Hi Beaujangles.

How are you doing? This combination of Her eptin and Letrozole takes its toll doesnt it! I finish Her ceptin in december 2018 too.

I find the aching and hotness in my legs really gets me down! I have also put weight on and i dont think thats helping either!

Do ypu feel down?eachmprning i feel low when i wake up - althpugh o think thos has improved a little in the last week. I am on week 8 ofletrozole and mynext herceptin is my 9th injection! Half way!

Ali xx

Sorry for the fat finger typos ??

I started Herceptin in april & I feel I’ve aged 20 years
Am also on tamoxifen so between them both i ache all over especially knees and ankles.
I can’t do much walking as my feet blister
Feeling fed up at the minute. I coped with chemo beyyer than am coping with Herceptin

Hello Carebear.
I finished Herceptin in April but didn’t have to have tamoxifen so perhaps my body didn’t suffer as you seem to be. It was only yesterday I commented that I’d rather go through chemo than Herceptin because of the muscles aches and joint pains associated with Herceptin. Twelve months of hell really. Saw the oncologist last week who suggested I see my GP about my painful knees. After shopping one day I made it back to my car and cried my eyes out in Sainsbury’s car park, because one painful knee I could cope with but two was just too much. In my desperation I made an appointment with my GP. He admitted he didn’t know anything about Herceptin and looked it up to confirm the side effects of the drug. I felt hopeless. I’d done s bit of research before I went and told him about muscle relaxant drugs which sometimes help. These are antidepressants (diazepam) and they have helped. As for my knees which was like walking with knives stuck in them I managed to get steroid injections and within 24 hours the inflammation of the lining of my knees had subsided. The relief was just amazing.
You’ve got a long way to go and I can only empathise with you. See your oncologist or your GP and keep on at them until you get help. Do some research of your own (from a reliable source) and be armed with your information because in my experience it’s been a case of “get on with it”.
I do wish you well and for someone who has come through the other side there is light at the end of the tunnel.

Hi Karebear, i am having Herceptin and Letrozole so dont really know which side effect is from which. I did have very painful knees just after i started taking the Letrofole.

i have stiff joints when i first stand up from any position and hot and aching legs at night.i get an upset tummy and I also felt really tired. I read advice on here to try High5zero tablets. They are rehydration tablets used by sports people. I dissolve 2 in 750ml of water and drink it. They contain magnesium and seem to really help.

MY tiredness and aching legs at nightime seem to have lessened over this last week but I did delay herceptin by a week though as we were away!

I had my 9th Herceptin today so will see how i go. I really hope things start to improve for you xx

I too read about magnesium tablets for the aches. I found some magnesium oil on Amazon. It’s a very fine oil which you can spray onto the souls of your feet where it is said to be absorbed more readily into your system and doesn’t cause problems with your bowels. Or you can spray directly onto your body.
It’s really been a case of trying anything I can get my hands on. My steroid injections in my knees have given me a new lease of life but I’m going to continue using the spray and sometimes soak in a warm bath with a couple of cups of magnesium flakes.
All the very best with your treatment.

Hi pam

Have you finished your treatments? Just wanted to find out what was the out come?