Question, Please respond.

[Adriana Mangus]

It will be four years (August), since I started herceptin, no heart problems so far, but in reading some of the postings, a heart condition can and it might develop due to herceptin use. I'm back on Navelbine+Herceptin, (May) and am concerned about possible heart side effects. Should I ask the Onc for a MUGA?

Thank you all.

[IRENE FROM TAMPA]

Hi Adriana

Has it been four years that you are on Herceptin and your doctor is not ordering Muga's?

I was on Herceptin for almost 7 years and they would order a Muga or an Echo Cardio gram about every 6 months at the least.

If you have been on Herceptin for 4 years I would definately check on having one done. I am sure everything is fine, but better safe then sorry.

Good luck

[chrisy]

Adriana, you do need to have regular monitoring - but my oncologist told me that if you do well for a while, as you have, you are likely to continue to do so. What that would mean to me is, you may be able to stretch out the MUGA or Echo (you can do either one) to a longer interval.

[vickie h]

Adriana, While I was on Herceptin (3 years) I was monitored carefully with echos at least every 6 months. I would definitely get an echo, it is hard otherwise to determine your heart function. Love, Vickie

[tousled1]

I was on Herceptin for one year and had echocardiograms every three months. Standard protocol for people on Herceptin is to receive either a MUGA or echocardiogram every three months. The reason is to check the LVEF.

[DonnaD]

Like Kate, I am being monitored regularly with muga's (onc likes muga's, cardiologist likes the echo). I had a muga and echo before starting A/C, and then a muga every 3 months since then. I will have my 4th muga June 22 and was diagnosed in Aug of 06.

I am sure all is okay but ask your onc. God Bless.
Donna

[Esther]

I was on Herceptin for 3 1/2 years and never had a MUGA or Echo. I had one done before starting Tykerb a couple months ago, and I was doing great.

Does age have an impact on how frequently the testing is done? Or is it an Onc preference?

[Lolly]

I think it depends on your onc's preference. My onc didn't order either until I was well into NED after my first year on Herceptin when he ordered an Echo, and all was fine. Then I'd have an Echo every 6 months or so. We just realized at my last visit it's been a year since my last test, so an Echo is scheduled.
I was getting MUGA's for awhile, after being in the UW/Seattle trial as that was a criteria of the trial, but I'm going back to Echo's as they're non-invasive. My lymphedema-compromised arms don't like injections anymore!

<3 Lolly

[StephN]

Hi Adriana -
Well, you got good advice from the others. I did not have a MUGA or Echo for at least a couple of years while on Herceptin ONLY after getting to NED.

Then I had shortness of breath after being on the dreaded Decadron for my brain mets. That started a host of tests of all kinds which I passed.

Now I am on a once yearly MUGA schedule as long as I am on the Herceptin as monotherapy. My med onc thinks this is a wise course at this point as they do not have much data for long term Herceptin users. I don't mind the tests at this frequency. Have one next month.

I also took a lot of Navelbine, and I don't think that is a drug that bothered my heart.
Glad you got a neg on the BRCA test.

[Chelee]

I had to have an ECHO before I started herceptin to make sure my heart was in good shape. Then after that I had one every 3 months or a bit after. (I never had a MUGA...only ECHO's.)
Have you ever had a ECHO or MUGA in the 4 yrs you've been on herceptin? If not...for piece of mind I would request one. It will give you one less thing to worry about if you get that done. Good luck and hang in there.

Chelee

[Belinda]

Hi Adriana. I had my first heart scan 3 weeks ago, before my first herceptin 2 weeks ago. My efractionb rate was 64%. My once explained that the chance of any heart damage from herceptin when your effraction rate was 65% or above was miniscule (can't remember the percentage but it was less than 5%). He was happy with my 64%.

He was looking about for a chart that shows the chance of problems dropping off dramatically as your efraction rate rises - couldn't find it but drew it in the air for me. You might be able to get your onc to find it for you? Bx

[Caroline UK]

Hi Adriana,

I'm over halfway through my year of Herceptin. I had a baseline echo done prior to starting, then one 3-monthly. My ejection fraction went down to 55% one time, and so I had another echo two, rather than three, months later. It showed that my EF had gone up to 58%, and I'm back on 3-monthly now.

My understanding is that it should be in the range of 50 - 70%, and if it goes below 50%, Herceptin is stopped. The heart recovers, hopefully, either alone or with medication help, and then, depending on your heart function, you can continue with the rest of your Herceptin. This is what I've learned, from my hospital, and from here!

[Andrea Barnett Budin]

Hi all! First, Adriana, send you a private message in response to yours yesterday, a long explanation. Fear it evaporated somehow. Did you get it? Re ECHOs and supplements and who remembers?????

Yes, you must get ev 6 mnth ECHOs w/Herceptin to check yr EF, just as prev posts say. But my oncol/nutritional whiz says to take Perfusia (which is Arginine) and you'll be gd to go heart-wise. He says to take 1 a day, versus the bottle which directs you to take much more twice a day. I'm starting with 1. Will go in Aug for my ECHO. Expect it to be as always, since '98. Small peri-caridial effusion. Not to worry, most likely not malig. I decided to agree w/that. Effusion remains small, prob won't go away they now say (as my pleural effusion did after stopping Taxotere). Both came as side effects from that nasty drug that I love because it annihilated ev tumor in my met liver. Am stable (my most favorite word in the English language). NED. SAME TO YOU -- all!!! With loving energy to my soul sisters... ANDI

[Ceesun]

Adriana-First let me say Happy Birthday right now because I, too was born on July 16! I have been on herceptin for 20 months and I have a muga every 3-4 months. My onc substituted an echo one time, too. Ceesun aka Cathy

[kacey]

Adriana.
Like most of the ladies I had Herceptin and my Onc had me have mugas every two months from the out set. I have horrible veins and lymphadema in left arm, but I babied my rt wrist vein which held up! Haven't had a muga now since oct when I quit the Herp.

Kacey