What percentage do they use to stop the herceptin?

nobleanna007

Hi I was wondering what % do they go by when they need to stop herceptin? I am sure every onc. has a diffrent number but I am curious since mine has declined from 78% to 54% since my original which was Jan. 07 and I started A/C 4ddx4 in March. 2nd muga scan showed decline to 58% but they say the A/C could have been the culbrit on that. I have been on weekly herceptin since May and just had my 3rd muga scan and it went down a little.. For some reason I thought they gave you a break off it at 50% if it went below that. My onc. is saying 45%. Just wondering what you all think or have heard.

                                                    Thanks Bidget

Jyber

My oncologist stopped herceptin when I went from 65% down 60% and then to 55% and did not recover after several "challenges" and a pause in the herceptin treatments. She said that a 10% drop is enough to demonstrate heart damage and that it was clear that herceptin was damaging my heart.

Many other doctors use the 50% (low end of normal function) guideline, but mine insisted on using the drop from original function. She said that the issue of long-term heart damage is a rising concern among those who treat cancer patients. ("We may have cured the cancer but we have given you a heart condition.")

snowyday

Such a good question, I will be startin herceptin with 61%, and I'm so scared over the herceptin I'm sure I have shingles now, have to get that looked at tomorrow.  The itching is painful wrapped right around my body from under the breasts to just above my belly button, I have got to make my mind up about this herceptin but I'm so damned terrified of heart problems I'm making myself crazy.  Jyber I love your quote, "We may have cured the cancer but we have given you a heart condition.  I can't make my mind up because of this very true risk factor. I sometimes wish I stayed dumb about chemo therepies and treatments and side effects. 

Jyber

Snowyday, if I were you I would go in assuming I would NOT be in the small percentage of those treated with herceptin who develop heart issues.

Even I, who did have to stop herceptin because of heart damage, am still with an ejection fraction within the normal range (55%).

I actually begged my oncologist to continue with the herceptin, because as I told her, "I am more worried about breast cancer than heart disease." I figured let's use all weapons on the BC; I can deal with other issues later.

Now I do appreciate how she handled it. Still, I would assume, unless you get other evidence, that herceptin will not be a problem for you. It is not for the vast majority of patients, who benefit greatly from its power over HER-2 + breast cancer.

Best wishes to you.

lisa39

Snowy, I agree with Jyber - try to assume that Herceptin will be fine for you - as it is for the vast majority of women.  I started it at 58% .  They thought my ejection rate was lowered by the AC chemo.  It has since gone up to 61%.  I'm not worrying.  Herceptin is a life-saver for us HER 2 + gals.  Sorry to hear you may have shingles.  I had them in June and it was terrible.  Get to the doc asap and get on the antiviral meds.  The sooner you start them, the less severe your outbreak will be.

Good luck,

Lisa 

nobleanna007

 You used to here occassionaly about pepole getting shingles but this year I have heard of so many people getting them in my rural area alone. Is something in the air?????  I hope your feeling better snowy cause I heard they are very painful. I am so sorry!!! I know how it is to have intense pain I am dealing with severe neuropthy and it s*** !!!!!!! I am like you I am scared to death but know I have to take it the herceptin, my heart scans keep declining and it does worry me. Sometimes I feel a ache and sharp pain in my chest and I am like I am having a heart attack!!!!  My onc. won't take me off it unless I go down 10% or drop to 45% As I see with everyone else there docs. are saying 50% This scares me.  But Cancer scares me more!!!! And I guess the docs know what they are doing and maybe due too my age they feel I can tolerate it functioning at a lower level. I hope they are right!

                                                          Take-care Bridget

henny

When I was taking Herceptin, I had to remind myself to take every day as it comes.

My heart pre-chemo was 83%. It dropped to 54% after 8 months of Herceptin. My onc was going to stop it if my ejection fraction went to 50% but it spontaneously went back up to 67% so I finished the year's worth. My onc did say that one of the good things about Herceptin is that the decrease in heart function is only temporary in most people and almost always goes back up after you're done.

Henny 

snowyday

Thank you everyone, I've decided to take it but have to wait until September now.  Get the port put in, make sure it's healed, get rid of the shingles and just do it.  I am sure I caused the shingles from stress, they alway felt worse when I got panicky about herceptin.  So I am going to eat a protein rich diet and hope that helps the nails and lots of oatmeal for heart.  So I will let you know once I've begun.  Thank you everyone. 

bjn850

My oncologist stopped Herceptin when my MUGA number went to 41% three weeks after my 12th tx. All my other tests were in the 50's%. I then had a break of 10 weeks between Herceptin txs and my score was back up to 53%. I only had four more treatments left so we didn't have another scan until my first follow-up appointment 6 weeks after the last Herceptin. And my heart function was back down to 43%. Sigh.  My energy level is pretty good. Having my aches diminish over time helps alot. I am assuming that my next MUGA in October will be back up.  Having the break extended the whole bc treatment ordeal an extra 6 weeks or so. Oh well.

I too had a spot of shingles or something like it and my oncologist gave me some antibiotics which made me sick to my stomach so I didn't finish them. It was only two inches round on my incision site and resolved fairly quickly.

Good luck to all. Hopefully it will all be behind the rest of you too.  That first follow-up appointment was even more exciting than the last treatment. Look forward to it.

TPPJ

Just wanted to chime in on this topic.  I assumed herceptin was discontinued if you got below 50%.

My understanding is that damage from A/C shows up years later, like ten years.  My onco. is seeing patients nowadays with what he feels is reversible cardiomyopathy...from herceptin.  Perhaps this is since early stagers are now getting it so there's more people/data.  My echocardiogram scores were great, right along.  I had three herceptins to go and went in for elective surgery.  Once they put me under, my ejection fraction plummeted to 5%.  I was diagnosed with cardiomyopathy.  They can't say for sure what caused it, but feel it may have been my 49 herceptin infusions.  After only two weeks on coreg and lisinipril, my EF went back up to 50%.  The cardiologist was stunned.  They never expected it to return to normal so fast.  I think this, specifically, is what my onco. is seeing...people whose EF's return to normal after being dx'd with cardiomyopathy....which previously was incurable, I believe. 

Even with all I've been through, I'd never opt to not do herceptin.  It was a gift that it was available in Jan. 07 for early stage patients....exactly when I needed it.  I was only stage 1 and thrilled with that, but once I heard her2/neu, I kind of freaked out...

janet11

My Herceptin was stopped when it got below 50% (49%).  Three months later it was 44% and it was affecting both sides of my heart.  I got a referral to a cardiologist, a diagnosis of cardiomyopathy, and a prescription from him for coreg.

It took 6 months to get my LVEF up to 50% again.  And 18 months later, my cardiologist proclaimed me 'heart healthy' and NO problems found any more.  He didn't think it would have recovered, but was surprised and happy that it did recover totally!!!  So if anyone else is having problems, be patient.  ok?   This IS possible.