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06-10-2007, 12:41 AM
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#1
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Senior Member
Join Date: Mar 2007
Location: Hilo, Hawaii
Posts: 1,867
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capillary leakage syndrome
Has anyone out there experienced capillary leakage syndrome? After my last chemo treatment of TCH, I noticed slight swelling of the ankles. When I squat down, I also notice some tightness in my legs and I believe this must be a symptom of slight edema throughout my lower body. It is very slight so elevation and watching the salt seem to be all I need to do. It isn't a significant problem and it doesn't prevent me from my normal activities, but I was just wondering if anyone noticed this also.
Harrie
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*** MARYANNE *** aka HARRIECANARIE
1993: right side DCIS, lumpectomy, rads
1999: left side DCIS, lumpectomy, rads, tamoxifen
2006:
BRCA 2 positive
Stage I, invasive DCIS (6mm x 5mm)
Grade: intermediate
sentinal node biopsy: neg
HER2/neu amplified 4.7
ER+/PR+
TOPO II neg
Oncotype dx 20
Bilat mastectomy with DIEP flap reconstruction
oophorectomy
2007:
6 cycles TCH (taxotere, carboplatin, herceptin)
finished 1 yr herceptin 05/07
Arimidex, stopped after almost 1 yr
Femara
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06-10-2007, 06:34 AM
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#2
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Senior Member
Join Date: Feb 2007
Location: Paris, France
Posts: 858
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Swelling
Hi Maryanne
I had 12 weeks of Taxol (like Taxotere) with Herceptin. After the 9th round my ankles and the bottom of my legs started swelling until I almost could not walk . My onc gave me a mild "diuretic" and it helped. It took 3 weeks after the end of my chemo to completely disappear. I still have Herceptin every 3 weeks and it doesn't have any sides effects on me. Taxol was a nightmare.
Ask your onc if it continues to help you.
Hope everything gets back into order fast.
Michka
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08.2006 3 cm IDC Stage 2-3, HER2 3+ ER+90% PR 20%
FEC, Taxol+ Herceptin, Mastectomy, Radiation, Herceptin 1 year followed by Tykerb 1 year,Aromasin /Faslodex
12.2010 Mets to liver,Herceptin+Tykerb
03.2011 Liver resection ER+70% PR-
04.2011 Herceptin+Navelbine+750mg Tykerb
06.2011 Liver ned, Met to sternum. Added Zometa 09.2011 Cyberknife for sternum
11.2011 Pet clear. Stop Navelbine, continuing on Hercpetin+Tykerb+Aromasin
02.2012 Mets to lungs, nodes, liver
04.2012 TDM1, Ned in 07.2012
04.2015 Stop TDM1/Kadcyla, still Ned, liver problems
04.2016 Liver mets. Back on Kadcyla
08.2016 Kadcyla stopped working. mets to liver lungs bones
09.2016 Biopsy to liver. no more HER2, still ER+
09.2016 CMF Afinitor/Aromasin/ Xgeva.Met to eye muscle Cyberknife
01.2017 Gemzar/Carboplatin/ Ibrance/Faslodex then Taxotere
02.2017 30 micro mets to brain breathing getting worse and worse
04.2017 Liquid biopsy/CTC indicates HER2 again. Start Herceptin with Halaven
06.2017 all tumors shrunk 60% . more micro mets to brain (1mm mets) no symptoms
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06-10-2007, 05:04 PM
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#3
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Senior Member
Join Date: Feb 2006
Location: Southern, CA
Posts: 2,511
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Harrie, I did TCH and about half way through my trt my lower legs, ankles and feet were very swollen. (Bad case of pitted edema!) It looked awful and felt awful. A few times it was so bad I was sent "STAT" for a doppler to check for blood clots. (But negative each time.) So it was just the Taxotere no doubt.
My pulmonary doc was more concerned about it then anyone...he gave me a script for Lasix and potassium and after that I was fine. When I was done with my chemo...the edema problem went away. So yes...your not the only one to run into this problem. If you want some relief...get some lasix...it sure makes the lower legs and ankles feel so much better.  Hang in there
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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06-10-2007, 06:19 PM
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#4
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Senior Member
Join Date: Aug 2001
Location: Oregon
Posts: 1,756
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I'm into week 8 of Abraxane with Tykerb and a few days ago, in the evening noticed my ankles were extremely puffy, which is not the norm for me...I cut out salt entirely for several days and made a point of keeping my legs elevated whenever I sat down, and they went back to normal. But will definitely mention it to my nurses next week at treatment, as I wonder if it's from the Abraxane.
<3 Lolly
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Sept.'99 - Dx.Stage IIIB, IDC ER/PR-, HER2+++ by IHC, confirmed '04 by FISH. Left MRM, AC x's 4, Taxol x's 4, 33 Rads, finishing Tx May 2000. Jan.'01 - local/regional recurrence, Stage IV. Herceptin/Navelbine weekly till NED August 2001, then maintenance Herceptin. Right Mast. April 2002. Local/Regional recurrence April '04, Herceptin plus/minus chemo until May '07. Gemzar added from Feb.'07-April '07; Tykerb/Abraxane until August '07, back on Herceptin plus Taxotere and Xeloda Sept. '07. Stopped T/X Nov. '07, stopped Herceptin Dec. '07, started Avastin/Taxol/Carboplatin Dec. '07. Progression in chest skin, stopped TAC March '03, started radiation.
Herceptin has served as the "Backbone" of my treatment strategy for over 6 years, giving me great quality of life. In 2005, I was privileged to participate in the University of Washington/Seattle HER2 Vaccine Trial.
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