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Old 12-17-2013, 10:24 PM   #7
vlcarr
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Join Date: Jun 2009
Posts: 343
Re: Lymphedema Issues

I developed lymphedema during radiation in 2009. It's been a long and frustrating journey for me but I am able to keep it under control. I use compression sleeves, gauntlets and gloves consistently. I started having what felt like nerve pain in the affected arm. I spoke to my doctor about seeing an acupuncturist at the intergrative health center that is part of the hospital. She said although it goes against everything we know about lymphedema she fully trusts the doctor so right now I'm going weekly.

I've had many many sessions with lymphedema therapists and even pay myself to have a certified therapist work on me on a regular basis. I am not wearing compression all the time anymore. I measure my arm frequently. Since I've backed off compressin the nerve pain has greatly improved. I'm not saying the acupuncture is curing it, but I've had some pretty amazing results with pain relief related to surgery.

I would recommend seeing a certified therapist and discussing the problems with your sleeve. They are no fun but you will get used to them but maybe you don't have the right size. I've had problems with getting the wrong size and if I had not checked I would not have known. I've even had the box say one thing but the tag on the sleeve didn't match the box.

I also have a Flexitouch machine that I use pretty much every day. I watch and have learned to read my body better but it's taken a lot of time and energy.

I feel I could go on and on. Feel free or send me a message if you would like to talk sometime. I would be happy to share my experiences. I think the treatment for lymphedema could benefit from some personalization as well. Over time you should get a better feel for what works for you and what doesn't.

Were you given a night sleeve? These can be very helpful as well.

Best wishes to you and hang in there.
__________________
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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