herceptin side effects after 5th one.

Hi all, I thought I was doing fine on herceptin but this last one seems to be worse. Anyone else have feelings of breathlessness and also as if I have a chesty cough but nothing much to cough up. All in all, I have just started to feel achey and nauseous, dizzy, hot flushes started up again (whic i’d just got back under control!)… but the most worrying thing is the slight breathlessness. It’s not really bad, just kind of there… My last heart scan revealed my reading had gone down from 69 to 52. they want to re scan me to check if these figures are reliable but now i’m worrying that the breathlessness is because the heart is now badly affected. Anyone in a similar position. If i have to stop because of heart problems then so be it. Just feel a bit disappointed as I thought herceptin was a breeze so far but now i’m suddenly hit with loads of side effects! Maybe these will pass off again, who knows. Am I alone on this, advice welcomed.

carrie x

Hi carrie

Here is the link to the BCC fact shift on herceptin which you may find useful breastcancercare.org.uk//docs/herceptin_july06_updated_nov06_0.pdf

Also, please feel free to contact the helpline to talk through how you feel as the trained members of staff will be able to offer you advice and support. The number is free phone 0808 800 6000 and the line is open Monday to Friday 9am to 5pm and Saturdays 9am to 2pm.

Kind regards

BCC facilitator

I’ve just had my 7th herceptin and can relate to the way you’re feeling. I too have been feeling slightly more breathless, but have assumed that it’s because I haven’t been as active over the past few months. I normally start the day by walking the dog for about and hour and a half, but I’ve been on combined taxotere+herceptin since April, and find that this is not always possible-partly through the aches, and partly as I’m quite tired at times.

The treatment last Thursday was the first of herceptin on it’s own, and I was amazed that I felt as bad as I did (I started a thread here-“as tough as tax, surely not?”), as there appears to be a belief that herceptin on it’s own is easy. Like you I’ve been achy and nauseous, and yes, slightly breathless too. But…strangely the echo I had done last week has shown a slightly improved score! I’ve gone up to 68 from the 66 of 3 months ago-so it may be that the breathlessness we experience isn’t directly related to the heart function?

I wonder if we go down with viruses more severely while on Herceptin? Or perhaps it is the after effects of chemo. I had laryngitis recently, which I know won’t have been caused by Herceptin but I was really ill for quite a long time. My voice went completely for 5 days and I was generally very unwell for 3 weeks. In the past, I hardly ever caught even a cold and if I did, it would pass quickly.

Hi Ann and Elaine

I think herceptin might make us more susceptible to viruses, i’ve felt so achey and tired and a slight sore throat which comes and goes… also if i have just a few minutes of sunlight, i feel really itchy around my neck and chest area which might have something to do with rads but that drives me mad. Also, I thought I had my hot flushes under control but they seem to have come back and I don’t know why. I take star flower adn other vitamin supplement and they stopped but now they’re back. I am wondering about a progesterone cream to try to balance up the hormones. It is a minefield, you get one thing over with and something else starts up! Still, we’re here and whilst I’m able to get ou and enjoy the day I’m happy. Thanks for your replies, Carrie x

Hi Carrie,

I was initially dx feb06. Followed by Full radical Mastectomy. 4 x epi then 4 x cmf.
20 radio. Then started Herceptin december 06.
Had the first Herceptin , things went fine.
Second Third, then I suddenly developed breathlessness. Onc sent me to a Chest Lung Specialist at my local hospital.
Each time i then had my Herceptin things began to get more and more worse to the point of taking a few steps and being very breathless.
Chest Doc prescribed anti hystermine loratadine 10mg 1 a day. Also was put on dexamethasone each time I continued to have Herceptin. Things got soooooo bad they did eventually have to take me off Herceptin. My ankles also started to swell, the breathing was awful, I also had a rash across my chest and it was itchy, and initially I thought oh my God this god damn Cancer has gone to my Lungs. Had x ray - no secondaries. Had heart scan and this had dropped to 46… So onc thought i had a really bad side effect of Herceptin. I also developed a cough as well. Felt absolutely awfull. I think it was the Heart that the herceptin was affecting. I did manage to have about thirteen so onc stopped it.
But I did initially think it was secondaries but thank goodness it was not. But it is so scary because your mind goes into overdrive and imagination runs riot. But everyone I had spoken to were fine on Herceptin and I seemed to be the only person who it affected.
So Try and have as much Herceptin as you possibly can and according to my onc they now think that 6 months of herceptin is just as good as one year or so he told me.
Take care
Please let me know how you get on

Carrie, Should have mentioned when you come of Herceptin. Your Heart returns to normal as it was before you had Herceptin.

Has any one suffered with a prickly heat sensation,It starts in my arms and flushes through me for about 5 mins,I have just had 7th herceptin