Hi this is my first time on i was diagnosed in march this year and had mastectomy with reconstruction. I finished chemo in july and due to start herceptin. I have been off work since march and am due to go back to work but am worried about the side effects of herceptin and if it will interfere with work. Can any one tell me if the side are as bad as once from chemo . westie123
Hi
Welcome to the forums, I’m sure other users will be along to support you soon.
In the meantime you may find it useful to contact our free helpline on 0808 800 6000, opening hours are Monday to Friday 9.00 – 5.00 and Saturday 9.00 – 2.00.
I have also attached a link to our free publication on herceptin
breastcancercare.org.uk/server/show/nav.30/changeTemplate/PublicationDisplay/publicationId/123
Best wishes
June, moderator
Hi Westie
sorry to hear about your diagnosis. I had herceptin and didn’t have too many problems with it - in fact I think as I recall that I didn’t go to work after as wanted to give myself a bit of time to relax after and make sure I was ok. All was good. The side effects are nothing like chemotherapy - some people have a bit of tiredness which is cumulative but definitely not nearly as bad as chemo.
Ruby xx
Hi Westie,
I think the problem with a lot of the comments on side effects of herceptin are clouded by the fact that everyone has been on chemo. Many of the side effects I believe are a result of that. Because a course of chemo that has ravaged your body has finished it doesn’t mean all the side effects stop within 3 weeks of the last one. I had a gap of 2 months before moving on to herceptin. It was more a last resort as I had exhausted all chemos then found to have been her2+++. I do not think I have experienced any side effects from herceptin having been on it now for nearly 6 years.
I hope that you won’t experience any but you do need to give your body time to recover from chemo. Good luck.
Dawn
xx
Hi Westie
As you probably know you will be subjected to regular heart monitoring to make sure the Herceptin is not causing any heart damage. I had my Herceptin stopped after 12 infusions because of heart damage and a low LVF reading. A cardiac scan revealed my heart damage is repairing and the LVF reading has increased and I am waiting on my oncologist deciding whether or not I can resume Herceptin and complete the full cycle of 18 infusions which I would like to do as I had lymph node involvement and would rather risk heart failure than the cancer returning. The only side effects I encountered was joint pain in my legs which made walking a bit difficult but was controlled by pain medication.
LYN
Hi Westie,
I started herceptin in May after returning to work after six months and I have experienced no problems so far apart from finding suitable veins for the canula.
I do enjoy two hours I have hooked to the drip as I have three year old to look after as well and get little chance to relax.
I started herceptin may 06 alongside tax chemo, first session knocked me for six but this was the tax not the herceptin, I finished 8 chemos July 06, went back to work Aug 06 when starting 25 rads and worked all thru rest of herceptin with no real noticeable effects.
had my herceptin appt’s timed so that i could walk my kids to primary school drive 26 miles to county hospital, buy lunch from the league of friends to eat while having treatment and be home in time for 2nd school run.
my only real bug was finding veins, started back at gym classes and also travelled to lanzarote and new york while on herceptin/tamoxifen and no troubles…
Debbie
I started herceptin almost three weeks ago - about to go for my second treatment in three days time - and must admit was startled by the side-effects. Was told I could feel shaky (literally) but felt weird, rather like chemo and when I told this to the head nurse at the oncology centre, she said “Oh, yes, floaty” which kind of sums up how I felt.
Had it late morning and then went to sleep in the afternoon, which is totally different to what I normally do. Ok, I was on leave so that helped, plus I had a double dose to kickstart the treatment so am hoping that’s why I got side effects.
Now sometimes I have a horrible headache but it’s literally momentary.
The biggest hassle for me was getting mouth ulcers, especially because had developed this thrush from chemo and then later had throat problems from radiation and had thought that was in the past. Spoke to the head nurse about it and she said she had never heard of such a side effect from herceptin. Have others experienced this?
Sorry to hear you are suffering side effects. I have just had dose 15 and have also not really suffered any side effects. The only time I noticed any was when I asked not to have the Piriton after about 10 doses. I had heard that by then your body was used to it. Not in my case! I wouldnt advise risking it. I felt very strange for about 2 to 3 days and very nauseous, thought I was going to be sick any minute. But then it passed off. Since then had Piriton and no problems. The only problem I have had is in trying to find veins. Now reluctantly had to have PICC line. Not happy with that at all. But it is only for another 3 when I am told it can come out straight away. Hope your body gets used to it. Its a pity we cannot have it instead of chemo for HER2s as the side effects I experienced I experienced on Taxotere were dreadful in comparison.
I too have started back at gym 3 times a week, and also walking a lot to try and lose weight. Dont give up. I nearly did for the last 4 when I had to have the PICC line but I thought of those who had fought for it for us to hopefully improve our chances. That keeps me going.
Hi Undermyhat,
So sorry you are suffering from the side effects of Herceptin. There are many and varied side effects but mouth ulcers do not seem to be one of them. Are you perhaps run down after all the other treatment? Pure pineapple juice is great for dealing with mouth ulcers. Swill it around your mouth a few times, spit it out and then drink about half a glass. Do this four times a day. There is an enzyme in pineapple which clears ulcers. Perhaps you should ask if you can take some multi vitamin and minerals to boost your immune system. I have had 2 lots of Herceptin and so far am only having a cough, back pain and a runny nose, nothing like the awful chemo problems.
Hope this helps.
E
Starfish,
What a shame you have had to resort to a picc line at such a late stage. It is such a nuisance having it flushed once a week. At least you only have 3 to go. I have a feeling that I will have the same problem further down the line.
Hope all goes well with you.
E