Just had my 4th cycle of Herceptin. I feel like a real hypochondriac. I ache from head to toe, I can hardly walk when I first get up in the morning or after sitting for a while. I am breathless and wheeze like an old steam train, I have bouts of diarrhoea, and feel so utterly tired. I was told I’d feel much better on Herceptin …how comes I don’t? I think my family thinks I’m exagerrating. The medics seem to think the same…
Are you still having chemo?
I am getting to the end of my 12 months on Herceptin. I have 2 more sessions to go, one next week and the final one 3 weeks after that. I have had exactly the same side effects, though not the wheezing. I take it they have done an echo of your heart and that is fine.
My worst side effect is the stiffening when I sit for long periods and when I get out of bed. Once I get going I am fine. Walking up stairs makes the muscles in my legs ache also.
All the doctors seem to dismiss the symptomns but they are definitely real. Unfortunately I don’t think there is much you can do. I would definitely mention the wheezing just in case that is a problem with your heart. My rate when down after about 3 sessions so I saw a cardiologist who put me on tablets which I have taken ever since, but my hear has been fine.
Sam
Hi aramis,
I suspect that when you were told you would feel better on herceptin it was more a question of - feel better on hereceptin than… chemo! I would take the wheezing and breathlessness more seriously though and speak to someone about it and not wait till your next muga/echo. Perhaps give your onc or bcn a call.
Dawn
xx
Hi Dawnhc!
Had the echo’s and talked to my onco., cancer nurses etc., and they just say its a side effect the breathlessness…my echo came back fine. I liken my symptoms to a severe asthma attack when it’s really bad…I feel like I’m running ona flat battery most of the time. To answer your question Sam I finished Chemo in November last year and started Herceptin mid December.
When I ask at the hospital about side effects everyone seems to be telling me there is none just to be aware of heart problems…I feel. Like I have turned into an old woman over night with my aching joints and breathlessness…is there any chance of ever getting back to normal?
Hi Aramis
If you’re also on an aromatase inhibitor or Tamoxifen that could be the cause of your aching body. I’m on Herceptin and Tamoxifen and I’m definitely more creaky than I was, and my bum does get a bit “lively” occasionally but I haven’t had side-effects of anything like the severity you’re experiencing. I hope things settle down for you, the aches and pains just make the treatment feel so loooooong…
It’s good that your echo is fine, that is the main thing. Hopefully things will settle and won’t get any worse. That is the case for me. I haven’t got any worse, but I did stop taking Tamoxjifen for the time beng. I told my onc I couldn’t cope with side effects from both and she tried to tell me it was all in my head but I stood my ground. I said I would try the Tamoxifen again when I have finished the Herceptin and my body feels normal again. For me it is about the balance of quality of life as well.
@aramis12, you are just behind my partner who has had 6 sessions of Herceptin. Your symptoms also sound exactly like hers as well. She had the breathlessness and wheezing at first as well but not so much now. In fact she seems to have every text book side effect going.
The big selling point by the medics seem to be “It’s nowhere near as bad as chemo” BUT it doesn’t seem that far off somehow. And she has to have 18 sessions, one every three weeks, whereas only 6 chemo. It’s a long haul that’s for sure.
Good luck!
Hi
I’m in the same position as Samlee with only 2 herceptins left to go, i started them in March last year.
Im also on tamoxifen, and though i dont have wheezing, I go through periods of aching in my legs and back, and sometimes my arms. I get some days worse than others but its so unpredictable, i find it hard to plan things.
If i’m on an achy day it seems to zap all my energy too.
Ive not had diarrhoea but rather ‘urgency’ for the loo.
Hi Aramis
I have had 3 Herceptin no 4 on 7th feb. I have had the Wheezing, short of breath. I went to chemo unit who said to go to docs and get an inhailer like the asthma one so i did and that seamed to help, when having my check with onc while having rads i mentioned it to her and she said it sounds like a reaction to the herceptin. I was given steroid and piraton (excuse spelling) with the herceptin and i have had no breathless or difficulty in breathing and its been a weeek. The piriton was not nice i was spaced out for the rest of the day but the next day ok and have been alot better this time round.
I too am on Tamoxifen feel achy and on toilet every morning.
Hope this helps
Silver xxx