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Old 04-03-2010, 09:22 PM   #1
vlcarr
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Join Date: Jun 2009
Posts: 343
Clinical Trial for Lymphedema - Flexitouch

Sharing this information I picked up at the hospital on a clinical trial for the Flexitouch system. I am not eligible--you need to be 6 months out of treatment. My surgeon is going to try and get this for me anyway. Below is a link to their site and a YouTube video I found about the woman who designed the system.

If anyone has used this please let me know.

http://www.tactilesystems.com/flexit...FUxc2god1z6u0g

http://www.youtube.com/watch?v=eXvhzpSjOUk
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Vicky
Age 47, TN, Diagnosed 05/09
Her2+, ER/PR-, Stage III, 2 tumors = 1 8cm tumor
Grade 3
Sentinel Node Biopsy-speck present in 1 node
Completed 3 month clinical trial of weekly Herceptin and 1000mg Tykerb daily
Tumor no longer present
Right mastectomy and lymph node removal 09/25/09
No cancer present at time of surgery, none in lymph nodes
Start TCH 10/15, every 3 weeks for 4 months followed by radiation
Finished chemo 01/28/10-YEAH!
Herceptin every 3 wks until end of June
Radiation begins 03/01, 6 1/2 weeks
Radiation complete--Yeah!!
Developed lymphedema after radiation
In hospital for 4 days with pneumonia:(
Herceptin done! 06/24/10
Port Removed 07/08/10
Still in PT for lymphedema and mobility issues
DIEP Reconstruction 05/11
I can be changed by what happens to me, but I refuse to be reduced by it~~Maya Angelou
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Old 04-04-2010, 10:40 AM   #2
Pam P
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Location: MN
Posts: 731
Re: Clinical Trial for Lymphedema - Flexitouch

Vicky - I have a flexi touch. I used to use it - but now it's packed in my closet. I guess it was too much hassle or I was too lazy to use it. One thing I didn't like was the vest doesn't fit me well & guess that was the best they could do in sizing - maybe it's better now. My lymphedema therapist recommended it get one maybe 4 years ago. She says it's the only pump device that is effective & safe. She actually now works for flexitouch company here in Minneapolis. Other than the ill-fitting vest using it was a comfortable experience, but it takes 30 minutes and I would get antsie having to lie in one position for that long. If I ever get into trouble with a big flair up in my arm I'll use it again if needed. They are very expensive, but my insurance paid for it.
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Pam
6/01 IBC er+ her2+stage IIIb; mastecomy
7/01 AC, taxol; radiation
2/02 tamoxifen
9/02 stage IV bone mets femara
1/03 taxotere/herceptin/aredia
6/03 herceptin, aredia & faslodex
1/04 navelbine, herceptin, aredia
2/05 herceptin/aredia
7/05 xeloda/herceptin/aredia
3/07 xeloda/tykerb/aredia
5/08 taxol/avastin/aredia
2/09 gemzar/herceptin/zometa
7/09 Taxol/Carbo/Herceptin, zometa
10/09 navelbine/herceptin & zometa
2/10 herceptin & tykerb & zometa
4/10 add xeloda &aromasin
10/10 dx with dermatomyiositis triggered by cancer
11/10 restart herceptin, tykerb, zometa
12/10 surgery-place rod in R femur to stabilize bone
1/11 radiation to R femur - 20 tx
2/11 2nd surgery - rod in Left femur
2/11 tx eribulen -- suspended dx brain mets
3/11 brain mets wbr 20 tx
4/11 halaven; discontine 8/11 not working
8/11 radiation to left femur 20 tx'
8-9/11 rad to lower spine
9/11 abraxane/herceptin/zometa
9/12 xeloda/herceptin/zometa
12/12 ablation of liver
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