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Unregistered, I did TCH also & had some slight edema in ankles & feet. It slowly got worse with each trt. Then around trt 4 or 5 it got really bad. My lower legs, ankles & feet were super swollen to the point of causing me pain. I thought it was the "TC" but when I finished that and just continued on my weekly herceptin I still had alot of edema in my lower extermities. (Some in my hands/fingers too.)
My swelling in my lower legs/feet was so bad that I got sent for a doppler several times. They were worried about clots but I always checked out ok. My ECHO's were always great too. Just so I could get some relief my pulmonary doc put me on lasix and potassium. I felt better when my feet were 10 lbs lighter. lol
Now I didn't have any stiffness with herceptin...that only happened when I was taken Femara. We all react differently to these drugs. So even if your onc says its unusal...that doesn't mean it can't be the cause. At least your onc is willing to give the weekly herceptin a try. I hope you get this figured out so you get some much needed relief. Wishing you all the best.
Chelee
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DX: 12-20-05 - Stage IIIA, Her2/Neu, 3+++,Er & Pr weakly positive, 5 of 16 pos nodes.
Rt. MRM on 1-3-06 -- No Rads due to compromised lungs.
Chemo started 2-7-06 -- TCH - - Finished 6-12-06
Finished yr of wkly herceptin 3-19-07
3-15-07 Lt side prophylactic simple mastectomy. -- Ooph 4-05-07
9-21-09 PET/CT "Recurrence" to Rt. axllia, Rt. femur, ilium. Possible Sacrum & liver? Now stage IV.
9-28-09 Loading dose of Herceptin & started Zometa
9-29-09 Power Port Placement
10-24-09 Mass 6.4 x 4.7 cm on Rt. femur head.
11-19-09 RT. Femur surgery - Rod placed
12-7-09 Navelbine added to Herceptin/Zometa.
3-23-10 Ten days of rads to RT femur. Completed.
4-05-10 Quit Navelbine--Herceptin/Zometa alone.
5-4-10 Appt. with Dr. Slamon to see what is next? Waiting on FISH results from femur biopsy.
Results to FISH was unsuccessful--this happens less then 2% of the time.
7-7-10 Recurrence to RT axilla again. Back to UCLA for options.
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