Herceptin How safe is this????

Try the triple positive thread.

I am 6 months pfc, and only on herceptin now til June.  It's nothing.  I get tired from the benadryl they give me before treatments (every 3 weeks), but I combat that with some Starbucks.  I don't have any side effects and feel great.  Where you will feel the side effects is from the chemo treatment.

When I asked my MO how many of his her2 patients had recurred, he said "none."  Truly the biggest pain is going every 3 weeks.  Good luck!

Oh, but they will check your heart function every few months.  For me, that has decreased, but not where I feel it or they will not treat me.  And from what I understand, it depends on who reads the test as to your numbers.  There are some who have had heart problems from herceptin (the "herceptin heart attack" thread), but not all of us do.

Herceptin is a game changer.  Without it those of us who have Her+ breast cancer have a very aggressive cancer which would proliferate and kill us rather quickly.  Docetaxol and Herceptin took me from being a woman with a best before date stamp on my forehead to a woman who, like the rest of the people on this planet, has no idea what will take me out of here. Thank you to the women who had the courage to try it when it was experimental, thank you to the researchers who worked to develop it.

That being said.  I wish that I could stop taking it every three weeks, but apparently that isn't until it doesn't work any more and there is controversy about that. I expect the duration will change as more data is compiled.  I would dearly love to have the time I spend in the infusion chair and the MUGA scans, and .the day and a half I need to sleep post infusion back.  Oh and I could deal without the joint aches, runny noses, and port.Then again, all of these effects are better, for me, than the alternative.  

Kay

http://community.breastcancer.org/forum/80/topic/764183?page=184

Try this thread...it's all about Triple+

I have been on Herceptin for almost 7 years now. I honestly think it is the drug that has kept me alive this long. I have visible tumors and I can see them get smaller after each herceptin treatment. I keep asking my onc to give it to me more often!

Only SEs I notice are I get chilly after the infusion and I get runny nose. Besides that it is very doable.

I had my 52 weeks of herceptin with heart testing no problems---but my nails are strong as ever LOL I don't know what it was with all the chemo or what but my nails can hardly be cut now and they all fell out at one time hahaha. And my hair is silky like a child's hair.  These are the ups of all this crap LOL

And of course harry Connick Jr. playing the Dr. who fought for the research and the use of it didn't hurt my decision either.

SpecialK, my cardio doc gave me the 12%. He read it out of his big black book he brought into the room. He didn't know a lot about herceptin and heart issues so he left me in the patient room to get the book and read it with me. He said it was an educating day for him. I saw him again today to go over my test. My ef was 50-55. He said it was low normal. I do not know what the ef was from the echocardio I had before herceptin treatment. My echo showed PVP'S, which seems to be from the herceptin, especially since I didn't have them before herceptin treatment.

I skipped my third herceptin treatment.  Next Monday it will be six weeks since my last one. This coming Monday I am scheduled for my third one. Right now my heart feels pretty normal. I'm no longer short of breath and I have lots of energy. I will take it one treatment at a time. I dread the next herceptin treatment.

eve - thanks for the info.  That is a high figure, so I wondered.  Your EF is pretty average - most of us have one in that range, including myself.  My third echo it was 55, and my last one it was 61 a couple of weeks ago, and I finished Herceptin in January.  Some people have an initial echo in that range.  I am sorry you are having trouble with the treatment, and feeling bad about the upcoming one.

They want me to take drugs but I don't want to.

Is there anyone with unbiased stats that prove this drug helps? Here's something I stumbled on that says we should be tested for this to prevent heart problems. Who's been tested?

http://strittermed.org/breast_equity/?p=467

"Significant heart problems develop in about 25% of those taking trastuzumab. Early identification is important to minimize the risk of overt heart failure.

In this study, measuring a blood protein called NT-proBNP (aka N-terminal pro-brain b-type natriuretic peptide) helped identify who was at most risk for this side effect.

40 patients had their blood checked for the protein before and during trastuzumab therapy. NT-proBNP was higher in those who had heart problems. If the test result was < 600 pg/ml, there was a 98% chance of having normal heart function. On the other hand, those who had results > 600 pg/ml had a 99% chance of having impaired cardiac function.

This bolsters the results of a study done in 2006 where the same test predicted trastuzumab-related cardiac toxicity.[1]

Importantly, this is a simple blood test that can be done at many medical centers. It costs around $200.

Caveat: this is a small study. Because of the cost of the test, many insurance companies may not cover it until larger clinical trials are done

Please see references below."

Eve, the percentage depends on how you define affecting the heart and also on what chemo the patient has had. In BCIRG, if you consider a 10% decline in LVEF to be "affecting the heart", then that occurred in:

• 11% in the AC-T arm
• 19% in the AC--TH arm
• 9% in the TCH arm

Depending on the distribution of the kinds of chemo, that might average out to 12%. (Something missing is a control group that had no chemo and no Herceptin - presumably in any group with median age of 49 and ages up to 74, some small group would have an LVEF decline over 4 years).

There has been some debate on whether that measure is meaningful because a 10% decline isn't a significant change for those who start out with good LVEF. This measure also doesn't differentiate between short term and long term effect. In the case of TCH, The mean LVEF dipped about 2% during Herceptin treatment and then rose so that after 4 years it was about where it started. Mean LVEF had the worst drop (about 4 percent) in the AC-TH arm but then climbs back up to almost where the AC-T line is after 4 years.The AC-T arm dropped and then leveled off at about 3% decline. It looks like Adriamycin has a long term affect on LVEF but Herceptin has a short term affect.

In the 3000 women in BCIRG 006, there were no cardiac related deaths. There were some cases of grade 3 or 4 CHF (congestive heart failure)

• 0.7% in the AC-T arm
• 2.1% in the AC-TH arm
• 0.4% in the TCH arm