i statred herceptin in march i think, well had 5 or six rounds. i have strted feeling sick n dizzy for bout the past month and half and have been back n forth to the docs, getting palmed off with tabs for nausea and nw some for dizzyness. is this the affects of herceptin or wot cos i really cant cope, sorry not been on for months n months but been very busy, ne advise be great as consdiering and a and e as meant to be having mri on tuesday but dunno if i can hold out till then
Hi Madgal
Really sorry to hear you’ve been having problems and at least you are being checked out now. I know some people do suffer from various side effects from herceptin but I don’t so I’m afraid I can’t help you and I know how hard the waiting is.
I’ll be thinking of you and hope all is ok.
Best wishes
Ruby x
Hi madgal1979
I have posted below for you BCC’s publication on Herceptin, there may be something here that will help you. If not do call the helpline and have a chat with the nurses here who I am sure will be able to advise you as to what to do next. The calls are free, 0808 800 6000, open Mon - Fri 9am - 5 pm, Sat 9am - 2pm.
breastcancercare.org.uk/docs/herceptin_july06_updated_nov06_0.pdf
Hope this helps,
Jo, Facilitator
thank you, i have looked at the info, and it does say dizzyness can occurr but normally only after first treatment, so surely shouldnt be having anything like this suddenly start three months on, after six doses. sorry to make a fuss just so fed up of feeling rubbish, and not being able to do much with kids especially during the six week break.
how is everyone else coping with treatment
HI IM DUE TO START THE HERCEPTIN DRUG IN A FEW WEEKS I THINK ITS ONCE EVERY 3 WEEKS FOR A YEAR
I AM WORRIED ABOUT THE FIRST DOSE AS I HAVE BEEN TOLD IT CAN TAKE 6 HOURS AND CAN CAUSE PROBLEMS
SANDRA
Oh, me too. I’m due to start herceptin on 21st August, 3 weekly for a year. Haven’t been told abot any problems. What are they?
I have been on Herceptin since Aug. 06 and haven’t noticed any major side effects. My first dose, as with all the others, took 90 minutes with a small flush before and after. I did have to stay at the hospital for a minimum of 6 hours because some people can have side effects with first dose. I have a heart scan every 3 months because it can affect your heart but apart from a little tiredness (maybe hospital atmosphere) on the day I am able to go back to work after treatment. I know we all tolerate drugs differently and I don’t think they really know all side effects for that reason. If Herceptin does affect your heart I believe they stop treatment until your recovers sufficiently, but I have heard different stories about that.
Good luck and best wishes,
Jan
HI my first one was an hour and a half,and kept for 6 hours, next was an hour and rest have been over half an hour,had no 7 yesterday,had no side affects at all.A lady I was talking to yesterday has had sickly feelings and has now gone back to having it over an hour and a half instead of half an hour to see if it makes a difference
Mary
xx
Hi,
I had my 4th herceptin yesterday and it has all gone OK. Obviously I feel tired after the treatment as they give you so much Piriton before the herceptin. I also feel really tired generally and have only managed to go back to work for two half days. It is difficult to know which are herceptin side effects and which are Tamoxifen side effects.
Hi Madgal - have you spoken to the nurses at the hospital about your side effects? I would go to them rather than my GP because the GPs seem to be a bit clueless about what we are going through (mine is anyway.)
Lorna x
I’ve been on herceptin since summer 2006. At the end of 2007 I started to feel under par and wondered if it was the herceptin, but that didn’t seem to be the answer. Then my tumor markers started to rise.I had a body scan, but nothing showed up. In February I developed nausea and dizziness. My GP immediately sent me for a head scan and I was diagnosed with 3 brain mets and immediately emergency admitted to hospital. I’m now doing fine on steroids and herceptin after whole brain radiation.
You probably don’t have brain mets, but from my experience I’d suggest you get your doctors to check out the cause of your nausea and make sure.
Lots of love, Lynn
thanks girls, i have a scan tuesday so fingers crossed, did ur hair fall out after that, sounds dumb i know but my haor doing really well at mo lol, hopefully all will be well.
i have been told by docs i have a tooth infection at mo and was findin hard to find nhs, even tho i have to pay fees, takes the mick dunnit that they dont see canccer as a liffe threatening illness to qualify for free nhs excemption
madgal are you on any benefits? dental care should be free if you are ,i go to houstons in milton rd and i know they do takwe on nhs patients ,just take your benefit notification and see what they say ,chemo really affected my teeth and gums and ive had to have some teeht removed ,all free thankfully as id never be able to find costs of treatments ,do hope that the appointment goes ok shouldnt affect your hair as no chemicals are used although you mat have a canula in with the dye . speak soon take care. lynn x
I had my first herceptin yesterday which took 2 hours including saline before & after. I was told there were no side effects, and I wasn’t gi ven piriton or any other drugs.
xx
I don’t have Piriton either, just a flush through
hi all
ive had trouble with my teeth since havin treatment im working so will have to pay for treatment,we have struggled abit with money during my treatment it was the radiotherapy that cost us due to petrol it was hundred and fifty miles a week for three weeks,thanks for info on herceptin
sandra
Hi,
I am surprised that you don’t have Piriton. I assumed everyone followed the same protocol. We always take two paracetamol before. Then 10mg of piriton through the drip followed by herceptin (takes one and a half hours) and then a half hour flush. I am in Shropshire. Where are you having treatment.
Hello Peacock - Did they keep you there to monitor you after the treatment or just let you go straight away. Have you had heart scans to monitor your heart function. If there were ‘no’ side effects they wouldn’t be monitoring our hearts so closely.
Lorna x
I have a few minutes initial saline flush, half hour herceptin followed by another flush, nothing else at all,am in Knowsley near Liverpool
I’m the same as Maryfrod, in that I only have a saline flush before and after, and I have my Herceptin over 90 minutes. I get a few side-effects about 4 days later - feel a bit nauseous and fatigued, feel like I’m wading thru treacle when I climb the stairs! This lasts a couple of days.
Jacquie
I don’t have Piriton either.
I have had 8 Herceptin so far, first one I had to stay in the hospital unit for 6 hours because not only is that loading dose more than following doses, but also in case I had any adverse reaction to it.
I have a flush through with saline first, then Herceptin over 90 minutes, followed by another saline flush through.
I live on the borders of London and Kent and am treated at The Queen Elizabeth Hospital and am treated 3-weekly.
xxx
Hey ho - don’t panic. Herceptin is so easy. I have one more to go of 18 and can honestly say there have been no problems at all. Just stay cool.