swollen ankles

suzan w · 05-06-2006, 05:16 PM

I have noticed lately-past 2 weeks-that my ankles are slightly swollen. I can see the indent of the top of my socks on my leg. In reading about herceptin side effects and heart troubles, I am worried that this could be serious. I am seeing my oncologist on tues. and also having herceptin infusion. Just had a MUGA last Thurs., don't know result yet. All other MUGAs have been 65%. I do worry about everything...Any one else experience this? No shortness of breath or anything else.

BubblesMom · 05-06-2006, 06:50 PM

Hi Susan,

I too have slightly swollen ankles, as well as swollen fingers. They aren't necessarily anything to worry about. I just had an echo and everything was fine. Hopefully just another irritating side effect from herceptin.

sassy · 05-06-2006, 07:38 PM

Not sure about swollen ankles, but I do have swollen fingers. After 30 years of wearing a size 5 ring (hands are definately smallest part of me proportionately!) I had to have my rings sized up. My weight is the same as pre-diagnosis, although I lost then regained.Sassy
________
Zoloft side effect

sadie · 05-06-2006, 11:25 PM

I have had swollen ankles (and lately feet) off and on ever since I started Herceptin w/Taxol.
At first, it would go away after a night's sleep and come again a couple of days later. Now, I just started my Herceptin-only treatments and my ankles and feet are swollen every day. It goes down only slightly overnight, then swells some more soon after rising in the morning. The onc and nurses seem to think that it has nothing to do with Herceptin. They keep asking me to monitor my salt intake (which is almost nothing) and to watch and see if maybe it's the shoes I wear or how much I sit at work.
I have never had this problem before, except for very slight, bearly visible swelling once in a blue moon if I was on my feet all day.
I tend to believe it's the Herceptin. My last echocardiogram was 60-65%, so the dr doesn't think it is heart related.
My onc prescribed Lasix & Potassium. That helped only a couple of times, but still did not take the swelling away completely.
I'm worried about it.
Sadie

Maryanne · 05-07-2006, 07:46 AM

Well Ladies,

You can add me to the list of swollen ankles. Mine started with Taxol & Herceptin, and now almost 2 months off my last Herceptin, still have the same problem.....Also seems my legs swell up as well by the end of the day. One slightly worse than the other. All my Muga's have stayed consistant at 57.
I have an appointment in 3 weeks with my new onc and will discuss it then with him. I also believe is is just another side effect of the Herceptin...so you can add my name to that list as well.

SaraD · 05-07-2006, 12:33 PM

i've also had swelling problems. from my reading, it's more likely due to past taxol or taxotere. these drugs cause damage to blood and lymph vessels that make you more likely to swell in the future. taxotere in particular is the worst!

since herceptin is a "protein", it tends to draw water towards it. if your blood vessels are leaky from previous damage, then you will tend to always have some swelling problems. i don't think it's the herceptin directly, but more likely the effects of all our past chemos!

i'm a science geek so i'm sorry if this is too technical. just my thoughts. it seems like those of you who posted also got taxol or taxotere (which i did as well.)

all the best, sara

suzan w · 05-07-2006, 05:23 PM

Thanks for all your input! I only received A/C...no taxol...so that does not account for swelling! I see my onc. on Tues...will ask about it then!

sadie · 06-18-2006, 04:33 PM

Even though my Onc believes the swelling is not related to heart or herceptin, she sent me to a cardiologist to "play it safe".
Cardiologist did an EKG and said heart is fine. Since impressions of his fingers (when he pressed on my ankles) slowly go away, he said it is water retention, not heart problem.
I had 4th Muga scan the same day. Did not get results from Onc yet, but tech told me, with a smile, it is "about the same as my last results"; Which were 60-65 on an echocardiogram.
I am relieved that the swelling is not my heart, but I find no other explanation for it other than Herceptin.
This past Friday I had my tri-weekly Herceptin treatment, and WOW, my left ankle swelled like a balloon a couple of hours later.
Considering all I had to eat that day was a bowl of raisin bran and some yogurt for lunch and a glass of orange juice after treatment, I have to think that it is the Herceptin causing the swelling.
It all started when I was on Taxol/Herceptin combo.

Chelee · 06-18-2006, 04:56 PM

I am leaning more towards the side of what Sara said. I too had the Taxotere, Carb, & Herceptin. My swelling started pretty much after my first chemo only to get worse as I progressed. I think in my case its the Taxotere doing damage? (But that is just my belief?) I have no way of knowing for sure after having so many drugs dumped in me.

I do know when I first got the swelling I did blame it 100% on the herceptin. I was scared to death my ECHO would come back bad and I would be removed from the herceptin. Since I heard herceptin can cause heart issues...I just KNEW in my heart that would be the problem causing my swelling.

Since all this I have been sent to a pulmonary doctor and he checked me out and said my heart is fine and didn't seem real concerned about my feet, ankles and lower legs swelling. Even the TOPS of my feet were SO SWOLLEN they hurt to walk on. The tops of feet got fire engine red like they were sunburned.

So he gave me lasix & potassium which I am STILL on to this day...and I still have the swelling. It is a little better with the lasix...but not that much if I have been sitting to long with my legs hanging down. I know if I sit at my computer too long they really get big and painful.

After I sleep at night they look pretty good in the morning...but not to long after being up and moving...they go back to their swelling mode!

In fact...they stay so bad that once I went back to this pulmonary doctor to show him how bad they still were...and right away he felt them...didn't like how much edema I had going up into the lower leg...and sent me to the hospital twice now for a doppler to be done on BOTH legs. He said my feet, ankles and legs shouldn't be that big.

(Well...sorry...but they are!) But both times I had the doppler on feet/legs...they checked out ok...thank goodness. They keep telling me due to chemo I am at more risk for clots. So they are always scarying me to death sending me for these dopplers. I rather be safe then sorry...but I have been told I have a possible blood clot about 4 times now.

But again, I do herceptin, taxotere & carb every three weeks...then weekly herceptin. That taxotere can be nasty...so I really think its that. When I go to the taxotere website...it does say it causes major fliud retention. That is one of its main side affects. Either way...I won't swear on which drug is causing it for sure...I just know I TOO ...have bad swelling that won't go away after using herceptin and taxotere. (I never had swelling before my DX)

Chelee

Jackie · 06-18-2006, 06:18 PM

I too have swelling. Mine started when I was on Taxotere/Herceptin and has cont. while I'm on just Herceptin. My swelling was really bad towards the end of my T. It is much better now, but I do swell in my feet and ankles. I have been off of T since Nov. I do believe fluid retention is a Herceptin side effect. I too am on Lasix & Potassium to help with the problem. I am on reduced salt intake, also. I can always tell if I have eaten something that is high in sodium by my weight.

bobbiw · 06-19-2006, 03:58 AM

Yup swelling here as well, in the fingers and the feet. Some days the tops of my poor little feet look like water baloons...well OK only if I tap on them they jiggle like water baloons! I too have been asked if my salt intake was up etc. It seems like sometimes docs dont want to add yet another side affect to the mix huh?
Bobbi

suzan w · 06-19-2006, 08:47 AM

Thank you all for your continued input to my question...as I said before, I never had Taxol, just (ha!) A/C. Now on Arimidex and herceptin every 3 weeks. The swelling started almost immediately after the first herceptin. Also severe leg cramps.My onc. says she hasn't heard of this but I find that hard to believe because I am receiving treatment at a major Seattle Cancer Hospital where alot of the herceptin trials were and are taking place! Ah well...there is security in numbers as alot of us seem to have symptoms/side effects that the docs pooh-pooh, but we know that they are there!!!

suzan w · 03-28-2007, 08:16 AM

trying to bump this back to the top because it has surfaced again as a question!

03-28-2007, 11:01 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.

suzan w · 11-19-2007, 07:30 AM

bumping this up again...some great responses here that made me feel 'better' about things!!!

11-19-2007, 07:42 AM

Susan and others with same problem,

I had swelling of feet and ankles while on herceptin, and it got worse as year progressed, not better. Immediately after my last infusion in August, I had huge dimples surrounding my ankle bone and was quite worried about my heart. I also had shortness of breadth. However, my stress echo in late June showed my EF was 60%.

In September, without herceptin, the swelling was gone. I still have shortness of breadth and get winded quite easily, so perhaps that was not the herceptin--I don't know, but I know for sure that the swelling was herceptin. It started with herceptin and went when the herceptin went. I hope that's the case with the rest of you.

rinaina · 11-20-2007, 11:39 AM

I had swelling in my ankles and my onc put me on the lowest dose of a diuretic and that took care of it. My echos were all fine. My nephrologist just recently took me off the diazide because my calcium levels were very high. Sure enough, the swelling came back within a few weeks if that. He now has me on a different diuretic that won't increase my calcium levels. I am convinced this all started from the herceptin because I never had problems with swelling in the past. I also now have hyper parathyroidism not to be confused with hyper or hypo thyroidism. Anyone else every have hyperparathyroidism?

suzan w · 01-14-2008, 07:17 AM

Bumping this us again!!! Knowing that there are others with the same symptoms eased my mind until I could get to the doctor!!!

Karen W · 01-14-2008, 08:12 AM

I haven't really had a problem during or after treatment with swollen ankles or legs. However, like Sassy, my fingers (more joints) are extremely swollen. I can't even bend the fingers of my right hand at all, yesterday and now today.

I am sure my symptoms are from Aromasin and I will speak to my onc about it this Friday at my appointment.

Karen

Mgarr · 01-14-2008, 05:41 PM

Forgive me ahead of time I don't usually get like this but I am reading more & more here about swelling & joint problems.

I had alot of swelling after my Herceptin treatments & I drank lots of water to help alleviate, it started in my ankles and then I had pain in one of my calves. I mentioned it but the doc wasn't concerned because my MUGA's were good so I suffered. Fast forward to ending treatment I had a little relief in the calf then my hip started aching non stop went thru PT to no avail then had a MRI; there was a great deal of swelling but they were not sure what the problem was. I went thru numerous blood tests and other tests with orthopeds until they finally decided it was not an infection or cancer so I could have the hip replaced. While using a cane my left wrist and elbow were swellling (I wrote a post or two about having lymphadema.) It was not lymphadema (recommened to see a neurologist because it was probably caused by surgery) before I could see a neurologist every joint in my body tripled in size and I could barely move. Back to the docs finally to a rheumatologist who drained all the fluid testing it and determined I have an "inflammatory arthritis" - which he said is mostly hereditary. Now, there are health issues that run in our family and this is not one of them. I tell every medical professional that will listen this is a result of my treatment & everyone dismisses me!