swollen ankles

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
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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