Hi everyone

Hi Sue

I have metastatic Her2+ bc as well.  I have only been on hereptin in combination with chemo so I am not sure what side effects can be attributed to what. I have heard a number of women complain of the joint pain and fatigue and runny nose as a herceptin side effect and brittle nails.  

I seem to cope OK with the side effects that I get - I think most of mine are related to the chemo that I take (I'm hormone -ve so not on any AI's).  The hot flushes and night sweats for me don't impact my life too much - I have just been given a gel pad for my bed at night which to date I haven't used but with the nights warming up it may be useful for the flushes.  I don't find the joint pain too debilitating so far - I just feel like a bit of a nanna at 39 some days. I have fatigue too but I'm a believer in remaining active to combat fatigue - not overdoing it - but not giving in to it - exercising moderately where and when I can.  With the "nose" side of things - I "douche" my nasal passages twice daily with saline and also use an antibiotic ointment on my nasal passages - this has worked for me with keeping my nose under control (I also take an antihistamine daily but this is for hayfever prevention).

I have accupuncture weekly to keep on top of side effects and I believe that this helps me enormously.  

This is a link to a US based website that I find really useful - this post was started in 2006 re: side effects from herceptin and Tykerb - there are some useful tips on there.

http://her2support.org/vbulletin/showthread.php?t=23696

Al the very best.

Amanda x

Thanks Amanda

Part of my problem is also that I'm not sure what drug is causing what SE as I know Femara causes joint pain, hot flushes and fatigue and Herceptin can cause them as well so does that mean I have double????? :))

I have been to that forum before and have learnt a fair bit from them as well. That is where I learnt that the eye sight problem is linked to the Herceptin no one had told me that was possible. I also learnt that my brittle nails were due to Herceptin I had guessed as much as I had nice strong nails before Herceptin now I have short flaky and brittle nails.

It's amazing how much the doctors don't know when it comes to the side effects, maybe we should give them the forum sites so they can read and learn and find out what works that way they might be able to help us more.

Quite a few people have told me accupuncture helps them with the hot flushes as well as the joint pain so think I will investigate that.

Good luck with your treatment and all the best

Sue

Hi Ladies,

 I do know that Herceptin causes joint pain and messes with your nails, I was told to put on very dark nail polish on fingersw and toes as they think it may be sunlight onneted to the loss of nails and the polish provides protection, I did this and my nails are still perfect, so far so good.

My eyes are also giving me grief as they are watering and twitching and I am finding it hard to read even with my glasses.

Not sure about fatigue but I'm sure it goes with the joint pain and I'm hoping the hot flashes and sweats disappear soon also.

A lady I see at chemo has been on Herceptin for about 3 years and she has liver mets but is going exceptionally well, the Herceptin was not available when she was first diagnosed which is quite tragic, but I hope you get your answrs and all the SE's disappear!

Cheers Cheryl

Cheryl that is a great idea to do the dark nail polish I never thought of it as protecting I always thought it might clog things up as before BC my nails used to go funny if I wore nail polish constantly I had to have at least a few days with no colour to let my nails rest. I have just put on some dark polish so cross fingers I see some improvement, I used to love my nails and was so disappointed when they chipped and flaked and broke for no reason, so I thank you for the tip. I hope yours stay good as well.

I am so grateful for having Herceptin and I too have spoken to a lady who has been living with BC for 30+ years and started on Herceptin 2 years ago and she has had no side effects she reckons her fatigue is age related but Im not so sure she was so active and positive which always helps.

To combat the fatigue I try to excercise but find that I am limited as my joints, especially the knees, just hurt so bad and if I get overly hot I have like a heat stroke reaction so that kind of interferes with the excercise plan but i do try to push through as much as I can and have increased from 10 minutes to 1/2 an hour so far..

all the best

Sue