very rare side effect doc stop hercp

bre16

I am here to tell you there are some very very rare side effects to herceptin. i started herceptin in march every three week dose at the same time i was having radiation which i had a hard time with they had to give me breaks and then start back up because i had third degree burns. what I'm trying to say is i thought i felt so bad because of the radiation. but after i got off that and was just on Herceptin and more i had Herceptin the worse i got i was having manic systems i was crying out of control and could not think, focus or make any kind of a dissioun no matter how small and then  i would go into laughing at everything. i could not stop laughing while i was going Thur this i also had very very bad head aches leg aches chills like i had a fever my blood pressure would go way up. all of this would last about six days. my onc did some checking and found that manic behaver has been reported as a side effect from hercep in rare cases so i went down to a smaller dose once a week same effect so my doc stopped my herc today saying it was more dangerous for me to take than not. i just wanted to let everyone now that not everyone can handle this drug and there are side effects that can be more life threatening than not being on it. just in  case anyone is having bad effects it can happen its not in your head i had about three months of treatment instead of one year and and after one week im starting to feel like my old self.

navygirl

Bre thank you for posting...the more people who are on it, the more we will learn about how it can affect us. I too has some harsh and uncommon side effects that eventually led to me having to stop treatment. It's very important for all of us to keep communicating changes to our doctors and make sure they are not blowing us off about the impact they have on our lives. I hope like me, you start getting back to your old self rather quickly.

gailian

I also had to stop herceptin due to heart & lung problems.  I only had 3 treatments, and had a very bad reaction.  Everyone is different & will react differently.  These are very powerful drugs & I agree that you have to weigh the benefits and side effects accordingly.  Glad to hear you are feeling back to yourself again!

2xBC

I went to every three week Herceptin after 12 week taxol and herceptin in May 2009.  With just the herceptin alone every 3 weeks (which is triple the weekly dose - thus the three week - 21 day cycle) I have noticed that my blood pressure is up.  Just 128/80 but I am very athletic and usually run 110/70.  I also, I think I am holding water especially in legs/ankles and stomach area.  I have read the posts about weight gain and herceptin and I have felt enlarged in the stomach area.  I wonder if I am holding fluid and also wonder if this is impacting my blood pressure.  My dr. was ok and said that I was bloated in stomach and did an ultra sound of stomach which showed no increased fluid but I  think I that herceptin might be impacting heart pumping thus the change in swelling and my blood pressure.   Any one else seeing an increase in blood pressure?  I am still well within normal range but I agree these are pretty strong drugs and I often wonder about how the risks may out weigh the benefits.  MUGAs have been fine but I am over due for my next one.  I had a treatment today (7/17) but MUGA drugs were short so they postponed my scan until before my next treatment on 8/7.  Any thoughts on the blood pressure would be helpful.  I think that all Drs shoudl read these message boards because we are really the ones who are putting actual data together about the lived side effects, not just what is written by the drug companies.  Thanks

gailian

I always get even small concerns checked out now.  It gives you peace of mind at least.  When my muga scores dropped so much, I was put on blood pressure medication, but I don't know how high it actually was.  I was ref to a cardiologist & everybody was always asking me about swelling in my legs or ankles.  I didn't have any - my symptoms were different, but this seemed to be something they were looking for.  If the muga drugs are short, maybe you could get an echo (ultrasound) of the heart - that's what I ended up getting from the cardio.  My enlarged heart also showed up on a chest xray.  I would actually liked to have stayed on herceptin & completed  the treatment, but with bad reactions from just 3 sessions, I just couldn't say yes again.  (The pain from the lung reaction (pleurisy) was still too fresh.  Anyway, just some thoughts from my experience.  When in doubt - check it out!