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Breast Cancer Survivor with Lymphedema

PostPosted: Sun Jul 09, 2006 7:02 pm
by LindaLou
Hi! I am new to the forum but have been reading posts for awhile. Diagnosed Nov 2005 with a new primary breast cancer. (had different breast cancer other breast in 2000) This time had bilateral mastectomy, 23 nodes removed all positive for cancer, 6 rounds of chemo and 28 radiation treatments including radiating the axilla area. Just completed cancer treatments a month ago. Developed lymphedema of the left arm during my 3rd round of chemo. Started PT right away but edema got worse during radiation treatments. Have now completed 3 weeks of intensive MLD and wrapping thru a PT/CLT center and am being fitted for a custom sleeve and glove. Hope to have new garments by end of next week. For now continuing massive wrapping day and night with self MLD during the day. Still having major problems with hand edema and tightness. While my fluid volume is considered mild I have rapidly developed moderate fibrosis and very thick deposits of lymph fluid from time of original onset. Have been stage 2 almost from the beginning and am a little discouraged that the edema is so resistant to treatment. Will be using a Jobst Elvarex flatweave sleeve and glove which I hope will help to soften fibrosis and decrease hand swelling. Therapist states I may need to consider a pump if the new garments cannot get better control of the edema. I am glad to have found this site and hope to gain more information from others experiences. Dealing with breast cancer has issues of its own but as others have said the lymphedema is a daily reminder of limitations. I try to stay positive and am intent on being as proactive as I can in keeping up with treatment regimens. I am just hoping that my condition will stabilize to a degree that I can gain better functionality of my left hand. :)

PostPosted: Sun Jul 09, 2006 8:19 pm
by patoco
Hi LindaLou

Just wanted to give you a super welcome to our family here.

With the amount of nodes removed and treatment involved, its not surprising you are experiencing lymphedema like you are.

It is interesting that there are actually studies out that indicate MLD plus a multi-chambered compression unit actually works better for arm lymphedema then just MLD.

One ewn type that is out, I am quite impressed with is the Flexitouh device.

http://www.tactilesystems.com/

I wish I could use it for both arm and leg lymphedema, but can't as I have significant lung fluid.

Last year, LindaLou, I started chemo for lymphoma. As we were all sitting around waiting to be hooked up...we all talked. There were several cancers represented, including a couple with breast cancer. Not one person in the group had ever even heard of lymphedema.

Soooooo.....we had a mini-training session. The next week a new women (BC) joined us. The first thing she said to the nurse was "I have to talk to you about my arm...something wierd is happening."

Bingo...had another training session. At least now, I know that this is one oncology office where the staff is well trained about lymphedema. Just wish they all were.

Again, super super welcome :!: Look forward to getting to know you and please, don't hesitate to post any question or concern.

:wink:

Pat

PostPosted: Sun Jul 09, 2006 11:27 pm
by LindaLou
Thanks for the warm welcome! I was just reading your posts about the Flexitouch this afternoon. I will be asking my therapist about it this week. It sounds very promising indeed. :)

PostPosted: Tue Jul 11, 2006 7:29 pm
by bygrace
Hi Lindalou,
have you tried any water exercises? I don't think I'm in stage 2, but I know they have helped me so much. The rehab center I went to has a LE therapist who teaches water exercises to LE patients. i try to swim 3-5 times a week for an hour at a time. I'm in chest deep water, using noodles (the foam kind) :lol: , foam dumbbells, and a kick board. Might want to try it. My insurance paid for the lessons. I now swim at a community college for a reasonable amount.
take care,
grace

PostPosted: Wed Jul 12, 2006 12:46 am
by LindaLou
Hi Grace,
Yes my therapist says water exercise is great for lymphedema so I have signed up for an aquatic arthritis class at the YMCA which starts in a couple weeks. I plan on staying in the deep end and keep my arms under water for the most benefit. She also says she has a lymphedema client who got dramatic improvement after doing Tai Chi exercise everyday for about 30 minutes a day. I am signed up for a pilates class that is designed for breast cancer survivors but may also look into Tai Chi later this summer or fall.

Because I have just completed extensive chemo and radiation treatments my therapist says my lymphedema is in a refractory period right now but she thinks it will get better over time. We have already shown improvement in reducing the volume of fluid in my upper arm but the hand persists in being tightly swollen even with daily MLD and wrapping. I am very hopeful that the combination of water exercise, MLD and the new custom sleeve/glove will finally start breaking down the hand fibrosis. I will keep you updated how the water classes go. Thanks for the suggestion. :)

Flexitouch

PostPosted: Sat Jul 15, 2006 11:17 am
by donsuzbee
So glad to hear some of you have had great results from the flexitouch. I have so much scar tissue from an implant following 1st round w/bc that I cannot use the system. Had to have the implant out as it did capsular contraction. Had a recurrance and radiologist said the implant may not make it through radiation. I put off having it out, but finally had to.

The flexitouch use causes me too much achiness to use it. So am donating it to my pt.
God bless!

Flexitouch

PostPosted: Sat Jul 15, 2006 11:19 am
by donsuzbee
So glad to hear some of you have had great results from the flexitouch. I have so much scar tissue from an implant following 1st round w/bc that I cannot use the system. Had to have the implant out as it did capsular contraction. Had a recurrance and radiologist said the implant may not make it through radiation. I put off having it out, but finally had to.

The flexitouch use causes me too much achiness to use it. So am donating it to my pt.
God bless!