Good luck tomorrow Choccie Muffin
Forgot to mention I have still got bad cording in my arm and after herceptin number 4 I think, I developed mondors cord in my good breast. Not sure if herceptin irritated my veins or I got a swift kick from my 3 yr old. But the chemo nurse did say it could be that the veins get easily irritated after chemo and although herceptin doesn’t hurt them, they might react badly to having something forced through them again.
Dx
Hi folks
Good thread and will follow it keenly. I had 10th Herceptin on Tuesday. So far the side effects have been annoying but manageable. I am also on Letrozole so not sure which se’s are from what. Side effects I have are: -
runny nose
sore throat
itchy eyes
achy joints
stiff fingers
strange feeling in toes
intermittent lethargy
cording quite bad - remaining from chemo
All in, I cope with this and find it nothing near as bad as chemo. I am back at work full time and enjoying being back in the midst of things. I hope you all cope ok with Herceptin, I feel it is so important to all of us Her2 positive folks. Take care, J.
I’ve had 4 of 18 Herceptin treatments and am on Tamoxifen as well, plus I had 3x FEC 3x Taxatore and Rads. I have been very fortunate so far as I’ve not had any side effects other than weight gain and water retention. I’ve noticed that some people mentioned having their herceptin treatment in 30 minutes. They set mine to run for 1 1/2 hours- not sure if this is related to having fewer side effects but it must be easier on the veins.
I completed 18th herceptin treatment at the end of may
.Throughout I suffered from aching muscle in my upper body, oncologist, acknowledged it was herceptin! probably because as we worked together for 6 years!
I still have episodes where my muscles in my back and neck are sore to touch,
Runny nose still
Ectopic Heart beats regularly, check myself at work, when I can feel a run, always worse after exercise.
Stiff in the morning and after sitting for too long.
Still some peripheral neuropathy in fingers and toes, ?? taxotere related as I had 4.
Slow growth of nail, now starting to improve.
Poor immune system
Still being seen 3 monthly so feel reassured
Charlie
Ive just had 10 of 18 herceptin and may be brought off for a while due to heart down to 59% it hacks me off that not only do we get cancer but the treatment gives us a hard time as well. Trouble is i feel ok and wouldnt know if it hadnt been for the echo scan. Have another scan on Friday when decision will be made. When i go back on it then i have to have another loading dose.
I also have had cramp and aching muscles didnt realise it was herceptin until onc told me on Wednesday.
Hi
Thanks for adding on to the list.
Hatty sorry u have the extra cconcern about your ef. I am always nervous at my echo and conseQuently my Pulse is always fast. I though 50 was the cut off, mine was 60 on chemo but has gone up to 65 now I have finished. It has been exactly the same every time, so I imagine any drop now would cause concern.
Found out this week that my constant salty tast in mouth could be neuropathy in my Tongue, oh joy.
Take care.
Debx
You’re DOWN to 59%? That was my starting figure before I’d even had any FEC! Went down to 53% after FEC, so let’s see whether they will keep me on it…
Bum.
the concern was because when i started i was 73% i dropped to 63%| and now to 59% the concern is if it drops to 50% which is the cut off, please dont let me scare you. It just means i will have a rest and then go back on it.
Hi All
I am on my 12th herceptin and I tend to have bad joint pain following especially in my kness and feet. I also hobble in the moring and after a walk sieze up. I also get chills and flushes am taking Tamoxifen as well, which i started same time as Herceptin. Am now back at work and am having to take the 2 days following Herceptin infusion off as annual leave as I tend to feel worse then.
I am also on the Herceptin trial. Also get sore joint pain in thumbs.
maggie
I was taken off of Herceptin after 9 as my ejection fraction had dropped to 40% - was told I had heart failure. 8 months on, with more drugs, it has gone almost back to normal. Another year of heart drugs and hopefully I can come off of them.
I’ve had 4 herceptin so far. The first one I had a reaction, I had an asthma attack but been OK on the others. Will be glad to go onto half and hour and be set free next time if everything goes OK? So far i haven’t had any side effects so I’m hoping that’s a sign of things to come (fingers crossed) I’m on the Persephone trial so only have 5 more to go so will have my last one on the 1st of December, finished for Christmas 
Am due to have another MUGA scan soon so I’m hoping that all comes back normal.
Emma
Hi,
Ive got my next Herceptin treatment this afternoon, still not seen my Oncologist after being rushed into hospital after my last dose, the leg pain was so awful I couldn’t walk. Hopefully I will be ok this time, its a worry though, didn’t sleep last night. Have my muga heart scan on Wednesday too so a busy week. Will post again after treatment.
Sharon
I am up to my second last Herceptin and feel exhausted. I spent most of yesterday in bed. I almost hope its from Herceptin because if not it’s the Arimidex. I have only been on it for about 3 weeks after 3 months on Femera which was causing joint and muscle pain but I still have that pain. Plus many of the other s/e’s like runny nose, nails splitting (length ways). During chemo I got this reflux and difficulty swallowing and that seems to be back again.
I was prepared to ‘wear’ the joint and muscle pain for a while in the hope it would subside but I could not function of I continue to feel this tired all the time. I also feel confused about what is causing what! I dont understand why the oncs are so reticent about discussing possible side effects?
Hi
I finished my 18 herceptin in March this year. I had effects like a runny nose cold for the first few days after each dose. This was greatly reduced by taking an anti-histamine the morning of each dose.
I got increasingly tired after each dose, especially the day after. Never fully recovering before the next dose. My eyes watered a lot, even after my eyelashes regrew from the chemo. My joints ached a little. My taste buds that were really bad during chemo got a bit better whilst on herceptin. But it is only since finishing it that I realise that herceptin has delaying them returning properly. Also my hair growth was much slower whilst on herceptin and my hair has started to really grow now I have stopped. Also my nails became very fragile, splitting at the slighted knock. The nails haven’t really improved yet, trying lots of nail hardeners. Working my way through them.
Heres to the chemo curls that are still with me after finishing FEC-T chemo 18 months ago.
All these were worth what herceptin can do for HER+ BC
All the best for all the herceptin ladies.
Hi, I’ve had 12 herceptin so far and the only noticable side effect has been tiredness, which seems slightly worse each time. I have to go to sleep when I get home from the hospital. And feel very tired for a couple of days after.
It’s six months now since I finished chemo and my hair is growing back, but very slowly, though it is quite thick now. Hadn’t realised that this could be because of the herceptin, maybe! My nails are still quite brittle, but I thought this was from the docetaxel chemo. So far my echo cardiograms have been okay, my next one is on the 5th September. Hoping this is okay as may be having more surgery.
Good luck ladies.
Just got back from having my Herceptin. Feeling very weepy and frustrated as my last MUGA scan results show a drop from 69% to 54%, apparently I am informed its bad if it gets below 40%. I know its not that low but since finishing Chemo 6 months ago its been on the up was 65% when I started. When is this all going to end ,apart from that it took 5 attempts untill they got a vein, my arm is sore and i’m covered in little round plasters. I ache everywhere all the time was told will feel better once the Herceptin finishes but that’s not till december!!!. Am also taking Tamoxifen so its difficult to assess what’s causing joint muscle pain. Seeing Oncologist Friday I agree with other comments that they seem to skim over side effects but its us that are suffering them.
Think I need Chocolate now…
Maggie
Hi
Maggie, it does get you down, being treated like a pin cushion. I remember one epic session where it took 12 stabs and four hours to get it in. I now have a nurse who know where my good veins are thankfully. Apparently the ejection fraction can change during the course of a day and gets lower if your heart goes faster with Chemo / stess. All being well my last one is in dec too. It seems a long way off.
I was at the soggy Leeds festival over the weekend and my immune system took a real battering. I am now suffering from festival lurgy and feel decidedly rough. Think I might join you with that chocolate. Sorry about your worries. Is there no medication they can offer to stop it dropping lower? Why do they wait until it is too late.?
Debx
Chocolate can cure SO MANY things, go for it!
I’ve now had three lots, and will have a MUGA scan after the next one. I admit I’m a bit nervous as mine was only 59% BEFORE FEC, and 53% after FEC, so I don’t have a lot of leaway.
Lucky thing that I am, I don’t seem to have any side-effects (either that or I’m really unobservant) and life is carrying on in most of its usual chaotic fashion.
Hope others are doing well on Herceptin.
Hi, all
mine was 55% at the benchmark scan and was 66%+ on my last one. I have 5 left to do so will finish in Dec too. I have lots of SE but nothing serious. aches & pains sniffles & sneezes and waves of fatigue as I am having right now. this morning I was full of energy-where’s it all gone?
I have December in my sights, hopefully the hair will get a move on and nails will improve.
Carol x
5 H’s to go just putting up and shutting up with it all taking regular brufen and paracetemaol. Read BBC Archive articles re Herceptin and listened to old Womans hour special on BBC I player. Not going to grumble again when you read how many other women who are HER -2 + have to fight to get the drug and many have died as thier PCT’s would not pay for it.
Have decided Chocolate red wine is the answer pamper yourselves, there will be a tomorrow to diet!!!
Maggie