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Old 05-06-2006, 05:16 PM   #1
suzan w
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swollen ankles

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.
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Old 05-06-2006, 06:50 PM   #2
BubblesMom
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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.
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Stage II / Grade III
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1 yr Herceptin (Finished 9/06)
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Old 05-06-2006, 07:38 PM   #3
sassy
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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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Old 05-06-2006, 11:25 PM   #4
sadie
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Swollen ankles & feet

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
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Old 05-07-2006, 07:46 AM   #5
Maryanne
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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.
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Old 05-07-2006, 12:33 PM   #6
SaraD
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swelling thoughts

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
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Old 11-19-2007, 07:30 AM   #7
suzan w
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bumping this up again...some great responses here that made me feel 'better' about things!!!
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Suzan W.
age 54 at diagnosis
5/05 suspicious mammogram-left breast
5/05 biopsy-invasive lobular carcinoma with LCIS,8mm tumor,stage 1 grade 2, ER+ PR+ Her2+++
6/14/05 bilateral mastectomy, node neg. all scans neg.
Oncotype DX-high risk
8/05-10/05 4 rounds A/C
10/05 -10/06 1 yr. herceptin
arimidex-5 years
2/14/08 started daily self administered injections..FORTEO for severe osteoporosis
7/28/09 BRCA 1 negative BRCA2 POSITIVE
8/17/09 prophylactic salpingo-oophorectomy
10/15/10 last FORTEOinjection
RECLAST infusion(ostoeporosis)
6/14/10 5 year cancerversary!
8/2010-18%increase in bone density!
no further treatments
Oncologist says, "Go do the Happy Dance"
I say,"What a long strange trip its been"
'One day at a time'
6-14-2015. 10 YEAR CANCERVERSARY!
7-16 to 9-16. Extensive (and expensive) dental work done to save teeth. Damage from osteoporosis and chemo and long term bisphosphonate use
6-14-16. 11 YEAR CANCERVERSARY!!
7-20-16 Prolia injection for severe osteoporosis
2 days later, massive hive outbreak. This led to an eventual dx of Chronic Ideopathic Urticaria, an auto-immune disease from HELL.
6-14-17 12 YEAR CANCERVERSARY!!
still suffering from CIU. 4 hospitilizations in the past year

as of today, 10-31-17 in remission from CIU and still, CANCER FREE!!!
6-14-18 13 YEAR CANCERVERSARY!! NED!!
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Old 11-19-2007, 07:42 AM   #8
Grace
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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.
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Old 11-20-2007, 11:39 AM   #9
rinaina
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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?
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Dx:3/06 had a lumpectomy April 19, 2006
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Old 01-14-2008, 07:17 AM   #10
suzan w
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Bumping this us again!!! Knowing that there are others with the same symptoms eased my mind until I could get to the doctor!!!
__________________
Suzan W.
age 54 at diagnosis
5/05 suspicious mammogram-left breast
5/05 biopsy-invasive lobular carcinoma with LCIS,8mm tumor,stage 1 grade 2, ER+ PR+ Her2+++
6/14/05 bilateral mastectomy, node neg. all scans neg.
Oncotype DX-high risk
8/05-10/05 4 rounds A/C
10/05 -10/06 1 yr. herceptin
arimidex-5 years
2/14/08 started daily self administered injections..FORTEO for severe osteoporosis
7/28/09 BRCA 1 negative BRCA2 POSITIVE
8/17/09 prophylactic salpingo-oophorectomy
10/15/10 last FORTEOinjection
RECLAST infusion(ostoeporosis)
6/14/10 5 year cancerversary!
8/2010-18%increase in bone density!
no further treatments
Oncologist says, "Go do the Happy Dance"
I say,"What a long strange trip its been"
'One day at a time'
6-14-2015. 10 YEAR CANCERVERSARY!
7-16 to 9-16. Extensive (and expensive) dental work done to save teeth. Damage from osteoporosis and chemo and long term bisphosphonate use
6-14-16. 11 YEAR CANCERVERSARY!!
7-20-16 Prolia injection for severe osteoporosis
2 days later, massive hive outbreak. This led to an eventual dx of Chronic Ideopathic Urticaria, an auto-immune disease from HELL.
6-14-17 12 YEAR CANCERVERSARY!!
still suffering from CIU. 4 hospitilizations in the past year

as of today, 10-31-17 in remission from CIU and still, CANCER FREE!!!
6-14-18 13 YEAR CANCERVERSARY!! NED!!
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Old 01-14-2008, 08:12 AM   #11
Karen W
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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
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