Herceptin and ankle swelling

Erin · 08-01-2007, 12:12 AM

Hi Ladies,

Two months ago, right after my last TCH I developed some swelling in my ankles. Onc put me on lasik - on four days a week, off three days. After 4 days the swelling would be completely gone, but the minute I went off the lasik it would come back. We gave it 6 weeks, but no improvement, so now I am on lasik every other day. Swelling improves slightly after I take it, but comes back on my off days. Suspended herceptin for now.

Onc says he will repeat my echo next week, but says it is pretty clear that I am having some heart failure issues, from the Herceptin. I got 5 full months of herceptin in, and as my onc says, if I were in Finland, I would have only gotten 9 weeks. Nonetheless, as you all know, herceptin feels like a magic talisman to me and I am really bummed about stopping.

Here is the question - Have any of you had to suspend herceptin for cardic issues and were you able to go back on it once the cardic function improved?

Thanks for your help.

Becky · 08-01-2007, 03:48 AM

Dear Erin

How do you know you are having heart issues without any ejection factor testing? I would insist on the testing now because if all is well, you have been off of Herceptin (and maybe for no reason). Ankle swelling, especially in the summer, could happen just because Herceptin stimulates the immune system. You doctor is right to test the heart but he should have done so a long time ago because if all is well with your heart now, it could be from recovery (and that Herceptin did cause a problem) but it could be that nothing was wrong to begin with.

Get a muga or echo now and see what's going on. If something was or is wrong, you might need to see a cardiologist (probably not but who knows - I think you get what I am trying to say).

Let us know how this turns out.

Big hug to you

dhealey · 08-01-2007, 04:00 AM

Erin, Have you had any shortness of breath? I think what your onc is worried about is congestive heart failure. You would have other symptoms though, like shortness of breath, extreme fatique and dizziness. I agree you need an echo or a muga. If the ejection fraction is above 50% you can continue with the herceptin. Some swelling is normal in the summer particularly if you are on your feet alot. Try to stay positive!
Debbie in North Carolina

mke · 08-01-2007, 06:27 AM

I had ankle swelling while on herceptin, I brought it to the oncologists attention and as it was not "pitting edema", that is when pressed down the skin popped back quickly, he wasn't worried. He just told me to keep my feet elevated as much as possible and let him know if it got worse. I had been having MUGAs regularly so we knew my heart function was good.

Gerri · 08-01-2007, 07:46 AM

Erin,

I STILL have swelling in my ankles and I have been off of Herceptin for several months. I was never given anything to take for the swelling and my echo was always normal. They are getting better but some days are better than others. I tend to sit too much at work and need to remind myself to get up and get my circulation going throughout the day. Like others have said, summer is prime time for puffy ankles.

Really do hope that your echo comes out fine and you can continue with Herceptin.

Best of luck to you.

08-01-2007, 07:51 AM

Erin,

To repeat what Becky said, have you had MUGA's, echos, or stress tests to confirm congestive heart failure? My ankles are huge since I began herceptin and I've had regular MUGAs and echos, and just one month ago had a full stress test. In all tests my LVEF was 60% or above. I'm convinced that the swelling for me is herceptin and that it will leave when herceptin leaves--getting my last infusion on August 7.

And I should note that I have discussed swelling with two cardiologists and neither are worried, knowing that the LVEF is fine.

Good luck.

Chelee · 08-01-2007, 01:59 PM

I was going to ask the same thing as Becky. How does your onc know your have heart issues? Have you had a recent ECHO or MUGA to confirm this? If its yes...then I understand. But I hate to see your onc pull you off herceptin before he knows for sure.

I did TCH and finished my year of herceptin and just wanted to tell you I got concerned too because around trt 4 or 5 of TCH my ankles & lower legs were swelling really bad! Pitted edema and very un-comfortable. My onc wasn't concerned since my ECHO's were great so I continued with TCH. My pulmonary doc put me on lasix...40 mg. That seemed to do the trick. I stayed on lasix for about 2 months *after* my last TCH and the edema *completely* went away. I've been OFF lasix since then and no problems. I was still doing my weekly herceptin and no problems. So your onc really can't be sure its your heart, nor from herceptin. I can't help but feel its just a side affect from the taxotere? This problem did NOT start for me till the END of my TCH trt. Your situation sounds the same way. I think you will find once you are off TCH that edema will eventually go away. Keep us updated and let us know what they find out. I have a feeling you will be ok and its just that nasty taxotere messing with ya. Hang in there.

Chelee

CLTann · 08-01-2007, 03:16 PM

Suggestion to get heart tested is the top priority, in my opinion. Lasix is only for temporary relief and serves no fundamental purpose. If you can tolerate the swelling, I would not take Lasix to hide the problem. Like many have said, if your heart is near normal you should continue doing Herceptin. Good luck.

Barbara H. · 08-01-2007, 03:25 PM

Five weeks ago I had a low muga. (45%) I exercised and went off Herceptin. A week ago it was back up to 60%.
Hopefully you will be in the normal range.
Best wishes,
Barbara H.

weezie1053 · 08-01-2007, 03:58 PM

I completed Taxol in Feb 07, and I take Herceptin every 3rd week til Nov 07. I have endured swollen ankles and feet. Only recently could I see the veins in my feet. My Onc schedules me for Mugas every 3- 4months or so.

Erin · 08-01-2007, 08:55 PM

Thanks for all the info! I am always sure to get some great encouragement when I ask questions here.

Not sure why my onc seems so convinced that the swelling is from heart problems without doing another echo. I will push for that before he has me miss another infusion of Herceptin. For the time being I think I'll go out and buy some new shoes that fit (LOL).

thanks

suzan w · 08-01-2007, 11:51 PM

I started a thread about swollen ankles...hmmm...in 2006 sometime. Lots of us experienced swollen ankles. Don't know how you can find my thread? I can find it and "bump it up" if you like!!!