Since starting Herceptin at the end of April (now had 2), I’ve developed a facial rash. Has anyne else experienced this. Many thanks.
Oh Lily, no-one’s replied yet! Maybe that means nobody has had the same thing. I haven’t and I’ve been on H for 18 months, and have v dodgy skin at the best of times.
Hope you get some helpful replies soon
Jacquie x
I havent had this happen either Lily. I have been on herceptin now since Jan.2004
Dawn
Hi Lily
As with any unusual side effects, it may be worth contacting your medical team for advice if you are concerned. Alternatively, please don’t hesitate to contact our helpline who will be happy to discuss this with you. The number is at the top of the page and they will be open again at 9.00 am on Monday.
Kind regards.
Louise
Facilitator
According to the packet insert ‘Other very common side effects of Herceptin, occurring in more than 10 out of 100 patients, are: diarrhoea, weakness, skill rashes…’ so it is a known side effect. I have heard herceptin patient complain about broken-out skin.
The packet insert does make it sound like rashes that appear during infusion are more serious.
Hi Lily
I did have a few reactions to herceptin when I was on it but this was when it was actually being infused - one of the reactions was a red blotchy rash that came up on my neck and chest although don’t think that sounds like what you’ve got. HOpe you get it sorted though.
Ruby xx
Thanks for the helpful replies. Lily x
I have just had Herceptin no 9 and i have noticed recently that my face seems red at times. When I had my first 2 loading doses I had redness in my face, chest and top of my arms, although I was on taxotere too so i couldn’t be sure whether it was that or the herceptin.
Linda
I havent had this but have just had dose 11. Last time dose 10 thought I would forego Piriton as told after about six can probably do without. Big mistake!! Felt really quite ill. Very nauseous and strange. So back to Piriton this time and was at gym the following day. But seem to be becoming increasingly tired. But not too worried as before had trouble sleeping!
Hi Lily
I have just had no. 15 of Herceptin and haven’t had any rashes at all. I don’t get given Piriton with mine and never had, but sometimes I do get quite an itchy skin so take anti histamines if that occurs.
The only reactions I think I can put down to Herceptin is broken nails, weight gain, tiredness and occasional diarreah.
Hope it gets sorted out for you.
P
Hi Lily
I have been on Herceptin since Jan 09 and I too have had facial rash and alot of redness the weeks not on Herceptin, at first I thought it was the Taxotere but have been off that since March, redness still there also feel like my face burns up alot, i.e as if i’m embarrased, but wasn’t like this before started chemo.
I know a few others up here in scotland who get red faces when on hercepitn.
Hope this helps your worries
Sharon
Hi Lisa
I have also been having a sore itchy swolen red face and neck.
Just wondered how you are getting on now?
Vxx
Hi Lisa and Vintage, I am also getting a dry and red face, and hot flushes from time to time although there isn’t a rash as such. The red face flares up randomly and is sometimes accompanied by a few red spots on my nose and cheeks. My skin is also so sensitive that I can’t even put moisturiser on without it flaring up most of the time. I started getting this during the last two cycles of my chemotherapy (Taxotere, Herceptin and Perjeta). During the fifth cycle it started about halfway into the cycle and only lasted a couple of days, but during the sixth it started a bit earlier and never really went away. At first I blamed Taxotere, and hot flushes were also blamed on the steroids. However, I now realise that the Herceptin must have caused it, because it is the only medication I am on now. I had my first Herceptin only injection on 9 January, and the problem has persisted - if anything it is worse now than during the chemotherapy. It is bearable at the moment, but seems to be getting progressively worse with each treatment. I will be seeing the oncologist on Monday, so I will take the opportunity to ask what can be done about it. Would be worth doing the same Vintage when you get the chance, or ring your BCN if you aren’t seeing your oncologist for a while. I hope things are better for you now Lisa, and that what they have given you has solved the problem, otherwise I would seriously consider asking to stop the Herceptin - if not now, after you have got half way, because that might actually be enough. You may have heard about the PERSEPHONE trial, which is looking into this - here is a link to further information: cancerresearchuk.org/about-cancer/find-a-clinical-trial/a-trial-comparing-6-months-and-12-months-of-trastuzumab-for-early-breast-cancer</p>
What I hate about this whole process is the length of time those of us unfortunate enough to be HER2+ and ER+ are expected to have ‘preventative’ treatments, and the assumption that you will continue with them no matter how bad the side effects. And if you do get bad side effects, all they can do is throw even more medication at you, which probably has its own side effects. I think they’ve got a damn cheek telling you that bad side effects are a ‘good sign.’ My response to that would not be repeatable in polite company, and would probably be regarded as ‘inappropriate content.’ I do hope they have managed to reduce your side effects to an acceptable level now, Lisa, so you are able to carry on with the Herceptin, even if you only manage to complete 6 months instead of 12.
Hi
Thanks for reply OldDawn.x
I had a chat with oncologist nurse and then seen my GP yesterday.
They think my reaction is still being caused by the T part of my chemo. They said it can take a while till things settle and as I was admitted to hospital with my first one, it shows I was very sensitive to it.
So, I have been given very strong antihistamines to take 3 to 4 times a day when required. Also some new mild moisturising things to use when showering.
OldDawn, my nurse also gave me a factor 50 sensitive sun cream for my face to try. She sat the T can also make you photosensitive to the sun.
Hopefully the symptoms will calm down soon.
Vxx
Thanks for sharing the feedback from.your team Vintage, glad they have given you something for it, and sorry to you and Lisa for rant last night (notes to self: 1. Don’t post in early hours, 2. Don’t be too hasty and give Herceptin a chance, 3. Be more positive, supportive and empathetic towards those who are suffering worse problems than you…). Although unlike you I didn’t react badly to T or Herceptin the first time, it makes more sense for the redness and sensitivity to be lingering effects of T (or even lingering effects of the steroids). The effects I am getting are totally random, and don’t really relate to when I had the Herceptin injection. If it was the Herceptin, you would expect it to be worse in the days immediately following the injection, then to gradually tail off, as Lisa describes, but it isn’t like that, it is more like a continuation of the effects I had during the last chemo cycle. There’s an outside chance it is an allergic reaction to the moisturiser I have been using, but I’m not convinced it is that because there’s no consistency. I had no problems with them up until the fifth chemo cycle, but from then onwards I have reacted - sometimes - to every skin product I have tried, including Simple day and night cream. I have even had a reaction after applying E45 lotion and aqueous cream! I’ll mention it on Monday anyway, to see what my lot say about the likely cause, and I’ll let you know.
Hazel, thanks for your understanding.
I’m afraid we all have meltdowns some time. I had my first really serious meltdown during the chemotherapy, when I was about to switch from FEC to Taxotere, Herceptin and Perjeta. I was so afraid of what the T would do to me, having read about the side effects, that I seriously considered stopping the treatment. Emergency hospital admissions with hyponatremia following two out of the three FEC infusions didn’t do much for my confidence either! But I was persuaded to carry on, and although the SEs were not nice, I didn’t end up in A&E again, and was able to complete the last three cycles of the chemotherapy without any delays or changes to the treatment.
Result: tumour shrank significantly, and was hardly visible on scans by the end, so operation last week (WLE with SNB) was much less drastic than it would have been otherwise. I won’t get the biopsy results until next week, unfortunately, so I am keeping fingers and everything else crossed that the surgeon has got it all, so I won’t need a second op.
Lessons learned from this: take things one step at a time, and don’t over-think or assume the worst will happen. That doesn’t mean you should suffer in silence though, if the SEs really are getting too much, so I’m definitely going to ask for help with the skin problems when I see the oncologist on Monday.
Hope everyone else on this thread is well and that their skin problems are now under control. XXX
Hi again Vintage - how have you got on with the treatment you have been given for your rash? I mentioned my problems to the oncologist on Monday when I saw him, and he also thinks it is the lingering effects of the chemotherapy, but didn’t offer any advice and I haven’t been given anything for it. To add insult to injury, he wants me to start on hormone therapy now - which would only make it worse if I did. So I won’t even consider taking it until I get some help with the existing problem. I’m not so sure the rash is caused by the chemotherapy now, because I hadn’t my second Herceptin only injection on Monday and it seems to be worse. I will hopefully get the chance to see a BCN tomorrow, and hope she can offer some advice and appropriate treatment, because it shows no signs of going away. I am not prepared to suffer this for the next nine months.
Hi OldDawn
I am back on Monday to have hopefully herceptin number 5 ( as it was put back for an extra 2 weeks)
As for my face. I am still taking the stronger Antihistamines the gp gave me and using Aveeno daily, recomended by a friend, quite moisturising, It’s not made it any worse.
I find heat can make it worse ? So I have turned the radiator in my bedroom off. It has got a bit better. But still have red itchy sore areas on forehead and neck.
I started Tamoxifen the day I started rads. I am 46. I do get hot and cold flushes and knees and feet ach in the morning, brain fog, and tire easy, but I had them before I started the tablets (again caused by chemo). I have been ok so far. Early days yet but hopefully that’s it.?
Maybe try your gp and see if they will help.
Hugs V x
Thanks for your feedback Vintage. Saw BCN yesterday. She said it could be a bit of both - it seems chemotherapy drugs can stay in your system for some time so the effects can sometimes take months to go away. She advised trying over the counter antihistamines such as Loratidine in the first instance, so I will try it to see if it helps. She also advised using perfume free soap and shower gel, so I have got some Simple soap and Sanex 0% shower gel for sensitive skin. I have also started using Dermol lotion on my face and so far it has been OK. You’re right about the heat making it worse. I can’t sleep without the window open and I’m still using a summer duvet! I am still not brave enough to take the Letrozole while this is going on and probably won’t risk it until after radiotherapy. That isn’t likely to start until March now - I am still waiting for appointment for initial consultation from the other hospital. BCN suggested talking to the oncologist at the other hospital about hormone therapy, to see what he says about taking it before radiotherapy. So I am feeling a bit more optimistic now. Hope things improve soon for both of us. XXX
Hello again Vintage and Coolnursinggirl - are you both getting on with the face rash - has it got better? My red face and dry sensitive skin seems to have gradually got better on its own (antihistamines weren’t much use). I had Herceptin number 7 on Monday. I still get the occasional hot flush, which seems to be worse just after an injection, but I don’t seem to get the blister like spots on my face anymore. I can also use moisturiser again. So perhaps it was mostly caused by the chemotherapy after all.