I’m on maintenance Herceptin which I’ve been receiving on and off for the past 4 years. After a 5 month break I had my 2 nd Herceptin on Wednesday. Since Thursday I have been feeling unwell, started by sneezing, runny nose ( which I frequently get with Herceptin ) aches, cough and today a temperature 38.3. Feel like I’ve had a dose of chemotherapy. I feel so unwell. Visited GP who said it must be viral. Anyone had any experience of such an intense reaction and when can I hope to start feeling better.
I’ve only had three herceptin but the runny nose is dreadful, I have terrible sores up my nose which keep drying and then nose bleeds. Called the chemo unit who told me to use vaseline which is helping. Such a long time to be on but if they are working then it’s gotta be done, I thought they have you in the hospital if the temperature is high and a cough also. Hope you start to feel better soon and take care. Snapper x
Hello! I had my 6th Herceptin two weeks ago and have been feeling really poorly, like you say just like chemo! Every other time I have felt ok, with running nose etc. But a day after having Herceptin this time I felt like I had been run over by a bus, I ached all over, my temperature peaked at 38.9, I had mouth ulcers, but the worst thing was a sore throat, it was really painful for 10days or so. The hospital ran blood test but came back ok and no infection. I have just started to feel better, its taken 2 weeks tho. However,I understand from speaking to a few people have had it before that sometimes you just get a reaction like this and the next time it will be fine. Which is what I’m banking on!! Hope you feel better soon xx
Hi, my second intravenous dose of herceptin (2/12) triggered severe migraines - something I hadn’t had for over 15 years. The migraines are bad, severe head and eye pain, disturbed vision, vomiting, light sensitivity and last for weeks.
My oncologist has increased the steroid and anti sickness dosage and prescribed sumatriptan, all of which has taken the edge off, but only a little. I don’t know how I can cope with this for another 10 months. Has anyone else suffered with this problem?
Hi, posting on behalf of my mum. She started on herceptin in July and has recently begun to have heart palpitations early morning, every morning, around roughly the same time, waking her up. She’s also suffering bad nausea and extreme fatigue that’s left her housebound. She was pretty fine up until the end of her radio - still leaving the house, driving, going to shops, working in the garden etc, now she can barely get down the stairs most days (she’s only 60). All bloods, ct scans and heart monitor are clear and missing one round of herceptin didn’t make any difference to her symptoms. can it really be this bad? Oncologist says she just needs to wait it out.
HI Ladies, I am currently on number 10 of 18 Herceptin, and it seems that with every passing injection the side effects get worse, Flu symptons, sore throat and exhaustion. My Oncologist says that Herceptin has minimal side effects… so then I feel like a wimp. So are other people having the same issues and if so any top tips that might help ?. The thought of another 6 months of this is getting me down. Thanks
Thanks Helen for sharing something positive, reading this thread could put someone off.
I have been reading this thread and didnt want to shout its not all that bad…but since you put your head over the parapet first I will join you
I have now had 8 herceptin injections of 18.
5 of them without chemo. Like you I am a little tired after them(that said I only had my MX 4.5wks ago so still recovering from that too)
I have my jab Monday, Friday I can sleep for Britain, Saturday/Sunday I am tired but can function then im pretty much me with my energy levels till the next jab. Id rather have a few duvet days and have the drug. I had bloods etc done they are nearly at pre chemo levels, I have no other side effects from herceptin
Jen x
Hi Waveylocks x thats actually good to know I already had high BP and a family history of heart problems so im being “treated to” extra echocardiograms whilst on herceptin. Most ladies at the hospital im under get every 3 months but I get mine every 2 I was worried about having to stop early for any reason so its good to know that it may not have to happen should anything go wrong xx
Thanks for posting that Jen. I am exactly the same. Herceptin on Monday & knackered at the weekend. My husband moans I am busy with my friends all week playing tennis & golf then have nothing left for him energy wise at the weekends. Good to know it’s the H. I also have had no side effects apart from the above. xx
Hi
my first thread so forgive me if it makes no sense!
my oncologist is dismissive of herceptin side effects, he believes that it is the remains of chemo wearing off
i’m still undecided
definitely get localised pain to injection site for a few days
as for fatigue have just had herceptin 4/18 and think things are improving but I think (like this whole experience) you get good and bad times
i was such a keen runner before my breast cancer that I kept trying to run (albeit slower) through chemo and now herceptin
i really believe it has helped, particularly with reducing fatigue, muscle stiffness and makes me feel better about myself
i know it isn’t possible for everyone to exercise but even on bad days I have come back feeling better than when I went out!
Hi Suzy I found 2 toenails had split at the sides today, this is despite continuing with onicolife drops, which I found made my nails very strong during chemo. I have glued the 2 bits together with nail glue, so nothing can get between the 2 parts & possibly pull the nail off. NOT a great development I have to say. Also dyed my hair with DF Watercolours & I have been tangoed by their dark blonde. I said to my husband, at least it’s a colour rather than Old Lady, which I have been sporting for the last 6 months, but it’s not a great look. Have agreed to go to a party tonight & really wish I hadn’t. I am absolutely exhausted after a trip to Eastbourne yesterday thanks to Southern train drivers work to rule. The carrot top will no doubt invite more annoying hair platitudes “oh your hair looks nice” which it clearly does not. This stupid BC just keeps on & on & on giving. ?. BHope the party cheers me up (misery guts today) xx