SEs from Herceptin???

Jeanne:  I started Herceptin with chemo in April and now get it every 3 weeks on its own. So far, absolutely no side effects. My MUGA was 74% before chemo and 72% most recently. My onc tests every 3 months, but, like AZSunn, I don't expect any problems.

Best wishes to you!

Sue

Hey Jeanne,

I also get Herceptin every three weeks, and have been getting it this time around for almost 3 yrs. I get my echo's of my heart every 3 months,, and so far no problems with the heart.. Not too many s/e's with herceptin, except the darn runny nose, and it seems like some sinus problems for me...Good luck and don't worry, they will monitor you ...Hugs Klynn

Jeanne, did I miss something?  Aren't you HER2 negative?  I didn't know Herceptin could be used for HER2 negative?  Thanks for any information you have.  Maryiz

Jeanne, the MUGAs are important.  I had five Herceptin treatments from 7/10 - 10/1.  The first four were part of my TCH chemo cocktail, the Herceptin only was in early October.  My onc was shocked (her words) when my three month follow up MUGA on October 6th showed a decrease in heart function from 63 to 48 and I was taken off Herceptin for  six weeks. 

I started back on Herceptin last week after follow up scan on 11/3 showed improved function to 60.  I will continue with treatments every three weeks through next July and will be monitored with MUGAs every three months.  I have had the drippy nose and a little bit of nausea ... but nothing compared to chemo SEs. 

I am 43 y/o, exercise regularly, and, other than BC, am very healthy, so getting the scans is quite important to avoid heart problems that could sneak up on us.

Darn and make sure you get a baseline MUGA done before you start Herceptin so important!  Sorry everyone, I'm passing a Kidnye Stone and am stopping and starting as I type so again sorry for the weird snippets of posts.

The most bothersome side effect for me was the drippy nose.  It was kind of like I was getting a cold.....then gone.  My sinuses have been bothering me too, but other than that I haven't had any side effects.

Hey Karen,  maybe it's the rads making your skin itchy? It could also be the reason for your fatigue.  I was very tired during rads, the fatigue would hit me like a brick wall in the middle of the afternoon.  It can also give you low-level nausea too.  Make sure you're drinking enough fluids and getting enough rest.  How many rads do you have to go?

Hi Lisa, That's exactly how i feel. It's kinda like chemo except instead of feeling nausea I feel soooo so fatigue. I have until Dec 14th a total of 6 weeks. How did you feel after you were done? Did the fatigue go away soon after or did it take awhile? I have been having hot flashes like crazy at night and I can't sleep it's driving me crazy. Did that happen to you? I just feel so out of it. I feel off balance and I don't know what medicine to blame it on. Maybe it's just me with my anxiety and panic attacks I really need to get some meds for that. I asked for meds before but could not because of my liver it was elevated but it's getting back to normal. Lots of Love!  Karen

Karen, sorry haven't been on the boards for a few days - finally back at work.  Re: fatigue - it got better within about 1-2 weeks of rads ending.  And about those pesky hot flashes - yes, girl I sure did get them. It was horrible.  Night and day.  I got a prescription for Effexor from my onc.  It's an anti-depressant that for some reason dimishes hot flashes - they will give you a very low dose - too low to alter your mood, but it's enough to reduce the hf's.  I went from about 15 a day to 3 or 4.  Suddenly, they ended altogether and I got my period back.  It was gone for 5 mos. total.  I'm 39.  Your photo looks like you're younger too - so your period will probably come back.  Meantime, get some Effexor - it helps a lot. 

xo... Lisa 

Hi Spa'r:  No stone passed but the pain is subsiding I don't get it. May the cranberry pill and cipro did something.  Still have abdominal pain and am very tired and really sick of feeling this way.  But I finally found a really good family Dr.  I'm thrilled with her.  Many people in London can't get a family doctor if they're already sick (it's true). So when I went in the first thing I said was 'I have cancer and a bad back, and I want to know if you take sick patients before I bother telling you anything else'. She laughed and said ' I am here to be a Doctor I take sick patients'. So I explained whats been on the news with new Drs. refusing to take people with chronic conditions and she acknowledged that she's heard herself and seen it on the news and not to worry.  So I finally have a family Dr.  she's having my abdomin checked as I told her I feel five months pregnant.  ( you have to have sex to get pregnant) so she's starting all the other tests for me, I lfeel so lucky. Thank spar for keeping in touch, I really appreciated it.  Well I can hardly keep my eyes open so I"m signing off. Tomorrow I will really try catch up with everyone.  Big Hugs!

Anyone get the funky mouth from Herceptin? My tongue is sore and I feel like I need to brush my teeth all the time. Also food is tasty funny. Some things more dull and some things more spicy. Did herceptin before but can't remember this SE.

Also man did I have the chills after my first dosage. Boy it was scary!

Yes, I get that odd sore tounge thing as well.  Sometimes more so than others.  I didn't think to associate it with the Herceptin, but your entry made me realize it is correlated!  I have been getting Herceptin for almost a year, and will continue for the duration as I am stage IV.  By the way I was originally DCIS, and it came bach as metastatic disease 9 years later.  I am grateful we now have Herceptin!

leftyAKAnancy, I used to take Herceptin. Due to the weakening of my heart muscle i had to stop. I chose to take Herceptin once a week just to take the lower dose. I figured if I took a lower dose it would have less effect on my heart but I stand corrected! I go Monday to see what they want to do. If they want to put me back on it or not. You might want to ask your onc about the once a week. If that makes you feel comfortable. Good Luck!  Karen

When I was on herceptin, I started with weekly doses and later switched to once every three week doses.  I assumed that I would be receiving more herceptin with the three week dose vs the weekly dose.

I was surprised to find out that although more herceptin was infused during the once every three week dose vs the dose for the weekly dose, I was actually receiving less herceptin once every three weeks than the total amount from three of the weekly doses (it has to do with the half life of the drug and how much is needed to keep the circulating herceptin levels at an effective level until the next dose).

Hey Karen:

You are going to be alright. I promise. You must realize the Herceptin is the key to really having nothing to worry about. Your heart Will recover. The benefits are huge to continuing on Herceptin. Heaven forbid you would have to do this again. If you can continue with Herceptin I am sure that your Doctor told you you will have a one in 9 chance of recurrence. That figure is the same as getting it in the first place.

I am going for my first TX tomorrow and I am scared too. But we are going to make it all the way to the other side. Remember to use visualization and relaxation too. I agree that prayer is still the best medicine.