Hi, my story had double mastectomy and auxiliary clearance of the nodes in one side in may, her2 positive, last week finished 6 long months of chemo didn’t fair too well! Very nauseous and towards end mostly bed bound quite weak even fainted last weekend. 12 weeks of Paxol and it got really tough the last month. Have early stages of lymphodema just started wearing compression sleeve and glove so hot and uncomfortable. Also have nerve damage so hands and feet are numb. I had herceptin on Wednesday having this until sept next year and feeling quite nauseous since is this something others have had from herceptin? Everyone assured me I would be fine having just the herceptin. Just wondering if paxol still lingering or am I going to feel like this for next 10 months of herceptin. I was hoping to go back to work in a week or so when I start radiation for 5 weeks. So sick of feeling sick

Hi @sickgirl, I’ve had a couple of Herceptin treatments on their own and didn’t have any side effects. Each time I’ve taken Panadol before the treatment. I don’t know if this has made any difference. I would chat to your oncologist before the next round to see if there is anything that can be done. Good luck. Jen xx.

Hi Jen, thanks for replying. I had panadol before herceptin also, will just see how the next one goes in 3 weeks and if still feel as sick will definitely mention it to my oncologist. I just seem to have a sensitive stomach hoping will improve soon and can tolerate it

I had a year of herceptin, 9 months on its own, with no side effects. So it may be a lingering chemo reaction. It's also possible that everything is getting you a bit down. I too have peripheral neuropathy and lymphoedema, the latter was somewhat of a pain until I got the right sleeve for me, not hot and not uncomfortable. Unfortunately you may have to try a few to get one that feels good and also works (which is a cost).The neuropathy should improve but it can be slow. But if the nauseous feeling persists talk to your oncologist or oncology nurse. Best wishes.

Chemo but no herceptin here. Just wanted to sympathise, you poor thing. There's nothing more miserable than unrelenting nausea. I hope you get some relief.

Thanks Afraser. I really am hoping it’s a lingering chemo effect! Things are getting me a bit down just feels so never ending. I will find out about the sleeve I know they can have ones customised so that may need to happen if going to be wearing it long term, I feel so uncomfortable with especially the glove!! I had heard the neuropathy can be slow to improve. Thanks for your wishes it’s a horrible journey hey!

Herceptin side effects | BCNA Online Network

18 Replies

sickgirl
Member
8 years ago
Hi Sue, thanks for response. Yeah is difficult to know what treatment is causing what side effects. I am having 3 week break between chemo and radio and can’t imagine will be feeling too normal by thnow start of it. Yes I could see oncologist sooner for sure. Just thought would see how I feel in next couple weeks. I didn’t expect to feel better this quickly after chemo I just didn’t know if nausea frim herceptin or not so the more I hear that no one else felt sick from it the better. Google side effects for it and they are basically same as chemo so not sure why they say I shouldn’t have any. Anyway sooner this nausea goes the better I’ll feel about the long term yes thanks x
Payne
Member
8 years ago
Meant to say, I was on pantoprazole (somac) but I didn't have nausea
sickgirl
Member
8 years ago
What meds were you on for reflux?
Payne
Member
8 years ago
Hi sickgirl, What a horrible time for you. I took Herceptin from the beginning with chemo and then continued for twelve months. I didn't have any side effects from Herceptin, but I got a lot of lingering side effects from chemo. As I was on 3 weekly cycles, expected to feel nearly normal after last chemo. The break between chemo and radiotherapy was 4 weeks but as the fatigue and weakness continued and worsened during radio. Was difficult to know which side effect was from which treatment. However, when just on herceptin - no side effects. Can you talk with your breast care nurse, she should be able to intervene for you and speak with oncologist. You shouldn't have to wait the 5 weeks. I agree with you, is difficult to look at the long term when you are dealing with the immediate problems, especially nausea. Love to you x
Sue P
sickgirl
Member
8 years ago
What meds were you on for reflux?
sickgirl
Member
8 years ago
Hi Kath, thanks for the reply. Yes I know I’m definitely not ready for work it’s just I need the money unfortunately but I won’t push myself I’ll ease back into it best I can and if I need more time I’ll take it. I’m starting radiation wed week so that’ll test me recovering and dealing with that at same time. I do need to work on diet and exercise though. I haven’t eaten great during chemo went off a lot of foods and healthy was last thing I felt like although in saying that nothing was doing much for me at all, no taste and nothing agreed with me still doesn’t much. I’m so weak so need to start moving again to increase my strength and yes will try the short walks to begin with. So who did the laser for your lymphodema? I’m not seeing my onco for another 5 weeks now but if nausea still continues seeing gp next week so I’ll speak to her about it.
primek
Member
8 years ago
Oh...as to nausea...are you on medication for reflux? That helped me.
primek
Member
8 years ago
I know the first Herceptins on tjeir own I just felt tired for a day or 2. Thats it. I had a difficult time with chemo and it was 7 weeks before I could work and then I started at 20 hours only...half days. Honestly it takes quite a while to recover. It took me 6 months to get to full time. I'm still not at full energy 14 months since chemo but I'm able to do a full days work.

So honestly you've away to go to feel recovered. My lymphodeama appeared during chemo and improved dramatically after and assisted with some laser. You'll probably need to wait until after radio for that.

So no "wonder woman" heroics. Rest a bit. Focus on nourishing foods and start doing some exercise. I started with 10 minute walks and also just seated squatting. Getting up and down from a kitchen chair, arms across chest. This strenghtens your legs. I was unable to get myself off the floor after chemo. Gaining 20 kgs didn't help.

If the nausea continues get it checked out, could be something still not balanced in your bloods. Kath x
sickgirl
Member
8 years ago
Yes Jobst is the brand I have now I am just going through the public system in Queensland as don’t have private health but I will speak to physio about it anyway. You are spot on about the reason we go through all this and we are very lucky to be given this second chance at life I won’t lose sight of that thanks x
Afraser
Member
8 years ago
I have a Jobst sleeve and hand, my lympheodema therapist fits it with a company rep (Melbourne). Completely understand, taking one thing at a time is often the only sensible way to go, just don't lose sight of the reason you are going through all this - to reclaim a life. Best wishes.