SEs from Herceptin???

Hugs to you ladies. There is so much going on in our lives - I feel that my treatments have taken over my life and I am almost obsessed with reading and knowing more and more about the side effects and statistics.  Maybe I read too much, worry too much, but it is MY body and I want what is best for me.  

I am not a lab rat or guinea pig, I am doing what has been successful for others.  Unfortunately, there are still no guarantees that once the cancer is cut out along with chemo and radiation -- that it will not come back.   My surgeon made me laugh when she said it took me 62 years to get this and it probably will take another 62 for it to come back and I may not live that long !!!   I then reminded her that my mother is 95 years old and had radical bi lat mast back in 1962 and SHE is still alive ...   

Ask for something to relax you during treatment.   There is no shame in asking - the shame is suffering.    

Just thought I'd add my 2 cents.  I had my 4th to the last Herceptin treatments this afternoon.  I have absolutely no s/e, although when I had the chemo I was sick as a dog.  I actually enjoy going to the doc's and getting the Hereptin tx's .  The nurses are all great and I've become friends with one of them in particular.  I might actually miss going there.  I'm very happy that I am able to receive this wonder drug.  God Bless and good luck, Mary  P.S. I've had no changes in my heart either!!!

Hi, great thread!  I want to share my experiences with Herceptin.  I have had 9 tx's to day--took Nov and Dec off, but guess I will start back up in Jan....

This is what I experienced while on Herceptin (they disappeared during these 2 months I have been off):

Neck Nodes are hard and tender, cervical and thoracic spine pain unbearable (I have pre-existing condition and it was intensified by Herceptin), Water tasted like salt, My eyelashes fell out twice!!!, but I didnt have to shave my legs very often , My urine smelled like chemicals, and I would smell this "sour grass" smell thinking my shoes were soured or something--but they werent, SLOWWW hair growth (its been 8 months since my last AC and my hair is only 2" long!)(but it has grown 1 of those inches during this break), extremely fatigued starting about 4p daily, finger nails peeling, horrible acne--esp on my neck, back and forehead--.  Edited to add: runny nose and painful feet in the morning (but as soon as I walk a minute it goes away).  My nose is still runny but my feet dont hurt in the AM since I have had this 2 month "break"

My doc kept telling me all this wasnt herceptin as "no one has SE's from Herceptin"- but I havent had any of these SE's since October but I bet they come back in Jan!!!

Welcome, Bonnie.  Glad you found this thread.   As I keep telling myself, it is NOT all in our heads.   

Those that go every 3 weeks, how long does your transfusion take?  I was suprised i was in and out in an hour or so for my 2nd dose.  Is that normal?

Laura

I wish mine took 40 mins.  I'm still around 90 mins.  Just had my 2nd Herceptin only treatment on 12/26.  I'm having some unusual side effects (chest pain).  Had to go to the ER after 1st tx.  Issue is with my lungs.  I was just happy to hear that it was not my heart.  I also have problems when I initially get up and start walking and with the runny nose thing.  I feel like I'm an old lady But...things could be much worse.  So I am thankful.

I was freaked out about the heart issues too. My MUGA score was a 73!

I've been on Herceptin weekly for about 7 weeks now and I feel fine. The only side effect I have experienced is a running nose occasionally.

If you have a port, ask them to flush it     S L O W L Y     or that funky taste can linger for a long time.  I was going to invent a nose diaper from the runny nose.  Can anyone comment on finger and toe nails?  Mine are horrible, half dead finger nails and most of my toe nails are gone.   This happened with AC chemo, then taxol and herceptin.   I am now on Herceptin only every 3 weeks.  Can I hope for my nails to recover soon?    

Good morning, ladies, and I really do mean Good morning - as in it's great to be alive.  Thought I would share this:  I completed a year's worth of Herceptin 2 years ago and had no bad SE's from the treatments, just peeling nails (still not right 2 years later), etc. A friend was diagnosed a year earlier than me, with a very nearly identical profile. She got the standard protocol and then started Herceptin, but had to stop due to life-threatening SE's.  After many, many complications, R. passed away the week before Christmas. Same age, same diagnosis - big difference seemed to be that I was able to take Herceptin and she was not, and she lost the fight.  I feel like I've dodged a bullet.

 My feeling is, if your onc and cardiologist feel that you're tolerating the treatments and you're able to tough out any SE's, hang in there. At least for some, the difference between Herceptin and no Herceptin can be life and death. SE's are temporary; life, hopefully, goes on.

Blessings to all.

I hear you gals, that Herceptin is really hard on us. I'm with you snowyday  Herceptin makes me feel off balance and I can't focus on anything. It's a battle everyday to have to stay focus. I'm 100% sure your gonna love it! I've been a Nana for 3months and this little man has stole my heart! He gives me strength when i don't even have any. It's like my mind tells me I have to get better because he needs me along with my little daughter who is 6 yrs. I also tell my onc about SE and they say oh no i don't know of that being a SE and I know that it is the Herceptin only because I was off of it a little over a month and felt great and now I feel not to good. It gives me problems with my sleep and panic. I hope that everyone is doing great and have started the new year very well considering the shitty cards we have been dealt.  Have a great Sunday night everyone and thanks for reading my post.

Lots OF Love,  Karen

I started my herceptin with my taxol and finished that in September.  Since October, I have been taking herceptin only for 60 minutes per session every 3 weeks.  Supposed to be 1 year total.  I have all kinds of side effects but how do I know which one did it?  LOL  The doc says "That couldn't be from the chemo"  Yeah right... My joints ache all over.  especially my feet and every time I lay down at night and try to get up.  I think I need a crane to lift me up.  It hurts so bad.  I thought it was just me getting old.

carlag67, yeah my feet do the same thing.  I am taking my list with me when I go back next Tues and gonna tell him to tell SOMEBODY.  He'll probably tell his trash can though...LOL

One big reason I have taken these 2 months off is the joint pain.  But sweetie, I hate to tell you this, the Taxol CAUSED the damage, the Herceptin just makes the damage hurt more.  I had a bone scan before I started chemo and the ONLY thing that "lit" up was the arthritis in my upper spine.  I had 2nd scan in Nov and I had "uptake" in EVERY JOINT in my body.  It was symetrical so not cancer, but the diff between the two was heart breaking! 

Doc said chemo eats bone cells to and he was right.  Dang.  I went right then and got calcium supplements, have no idea if it will help...

Hi girls, interesting read.

I have just finished last november my Herceptin treatments. I have mostly been lucky - or should I say, relieved to see how much easier than chemo it was. hm. I didn't notice any specific side effects, but after reading you - I am finally understanding why my nails have never recovered after Taxol. Actually, I think they were better during taxol than now!!! I keep having nails breaking and peeling off. hopefully it will now gradually get better....

Yes, I also have the joint pain. Not sure if it is herceptin or Tamoxifen? who knows. I hope it is the herceptin - that one is out now... I guess evaluating SE is difficult, we are all taking so much stuff that who knows what is producing the SE???

Hugs.

My 2 big toe nails died as well.  I noticed it when I was receiving neo taxol/herceptin treatment.  They seem to be growing out now that I'm only receiving the herceptin.  I thought for sure it was the taxol, but now reading what you all have been saying, maybe it was the herceptin?!?! 

I feel like I've been hit by a mack truck the day of my herceptin infusion.  My oncologists office told me that I shouldn't feel a thing,  so the  first day I received it I also made plans to work.  Big mistake!  I felt tired and achy, and also like my head was some how disconnected from my body.  Now I plan my day accordingly i.e. infusion then sleep (for hours).  I'm pretty much good to go by the next day.

Moodyk13-I'm glad you decided to stick it out!