Swollen ankles/feet on herceptin, anyone?

03-27-2007, 09:44 PM

My feet and ankles swell but not always. Some evenings I can't see my ankle bones and my feet look like balloons and other evenings they look normal. I do pretty much the same things every day (sit in front of my computer) so that doesn't account for it. I've been on herceptin (every three weeks) for six months and this comes and goes, as does my cough. I'm wondering if anyone else on the board has experienced this type of swelling and, if so, did you notice a pattern: did it precede a lower LVEF? Does it happen immediately after infusion, or a week later, or two weeks later? Does it come and go as mine does. I'd love to figure this out and would appreciate hearing from anyone having similar problems.

hutchibk · 03-27-2007, 10:01 PM

How are your MUGA scans? Swelling of feet and ankles can be an indication of heart issues (congestive heart failure)... and we know that Herceptin is tough on the heart. What does your doc say?

03-27-2007, 10:09 PM

My last MUGA was 63% (less than two months ago). However, same MUGA showed hypokinesis in right ventricle, so I went to see a cardiologist. (Of course, the day I went to see him my ankles looked normal.) He checked me out for CHF but found nothing suspicious. He called my oncologist regarding the herceptin and they thought I should finish the year but get my next MUGA in two months. I'm scheduled for an echo this Thursday (which will check both left and right ventricles), but if again my LVEF is okay, how do I find out what's causing this swelling? Any thoughts?

LindaC · 03-28-2007, 06:34 AM

Grace,
I to have the same problem and my doctor told me it was from the chemo.
LindaC

Hopeful · 03-28-2007, 07:04 AM

Grace,

When I was briefed to sign the consent forms for Herceptin infusions at my onc's, they pointed out that I might experience ankle swelling, and, if so, to report it to my onc and they will prescribe a diuretic for it. You should ask your onc about this symptom and see if they will give you a medication for it. Fortunately, I have not had this experience, but I recall posts from others who had and got the water pill and were fine afterwards. Best of luck to you.

Hopeful

03-28-2007, 07:38 AM

Linda,

When you say chemo, do you include herceptin? I've been of chemo drugs since November. Thanks.

suzan w · 03-28-2007, 08:12 AM

When I started herceptin (Oct. 05) I started a thread on swelling ankles! It is probably buried in the website archives but alot of us here experienced ankle swelling. I am happy to report that my ankles are now back to normal!!!

Gerri · 03-28-2007, 08:19 AM

Hi Grace,

My feet and ankles started swelling while on chemo - with Taxol they never really did go down. I could only wear one pair of flats to work the entire time - ugh! While on Herceptin (only) they would go up and down. My echos were all normal and my onc kept an eye on the swelling but didn't give me anything for it. I am now done with Herceptin (only two weeks out) and am looking forward to smaller ankles - among other things! I notice my feet swell more when I wear heels - oh the price we pay to wear cute shoes!

suzan w · 03-28-2007, 08:28 AM

I bumped up my post on this subject from last May!!

03-28-2007, 09:14 AM

Thanks Susan and everyone else,

Next time I'll be less lazy and do a search as the information on your previous post gave me the answers I needed to feel less threatened. I noticed another thread running through everyone's response: the "my medical team doesn't believe me" thread. That's the story of a lot of our lives, and one of the more annoying aspects of this disease. Although I can sympathize in part with our doctors, nurses, technicians, who hear so many complaints all day every day that they discount some of what we tell them, still I hate it and I some times wonder what the purpose is in seeing my oncologist every six weeks. Just another occasion to show my downsized, dimpled, scared, blue breast. I've gotten very good at feeling for lumps and bumps and will probably find them before he does. Of course, I then go home and start my internet searches tryng to find the answers for myself.

I had an interesting day last Friday. My sister, who teaches a doctoral program in nursing, was teaching a class on medicine and technology and the use of the internet by medical consumers. Most of her students are nurse practitioners and at least half (six) are in oncology. Margaret asked me to talk to them about my experiences in using the internet to do research on my own disease. They were all very nice and listened carefully to my experiences, but still I got the feeling, at least from some, that there's a good bit of discounting that happens when listening to patients with cancer. I think some of what I spoke about will change this. I mentioned, for example, that the one time I mentioned my very runny, crusty nose, I got the look--you all know the look I mean. And this despite the fact that the infamous runny nose is even listed as a side effect by the makers of herceptin.

One of the students suggested that my sister make a documentary concerning one of our primary issues: most of us educate ourselves about our diseases and when we have side effects they're real (for the most part) and we want to be listened to. I like my oncologist very much but I rarely mention my side effects any more. When I think it may be serious I do a lot of internet researching and always come here to get the final say. And if I think I need to see another doctor or get another test, I suggest what I want and trust he'll go along. Usually, he does.

Sorry for the rant!

P.S. I noticed in reading this over, that I wrote "scared" rather than "scarred." I decided to leave "scared" as perhaps it's a more apt description.