new member with lymphedema of the arm

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new member with lymphedema of the arm

Postby uscmom » Sat Jul 29, 2006 3:49 pm

I'm new at this site but thought i would give it a try to see if I can get a little information and support. I found a lump on my right breast on my 40th birthday and with in a month I was having a masectomy. They removed four of my lymphnodes and the cancer had not traveled through them so I choose to skip chemo and radiation this September I will be a 3 year survivor. I was diagnosed with lymphedema about 6 months ago and went through the vodder therapy and now wearing my compression sleeve during the day and a night time garment at night it is really starting to be tight and painful. I not sure doing all this is helping. I am not sure why it is just now feeling painful. Is there any one that may have some helpful advise. uscmom
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Joined: Sat Jul 29, 2006 3:35 pm

New member with lymphedema in arm

Postby donsuzbee » Sat Jul 29, 2006 4:11 pm

Sorry - but welcome to the bc survivors le group. The best thing I can say is keep on good terms with your le pt - you will get to know him or her very well. Periodic pt is part of my routine. I wear compression sleeve daytime and Tribute vest and sleeve nighttime. My insurance limits pt to 20 visits per year. And I use everyone of them. My therapist helps me space them out over the year.
I posted the "hot weather" post and hot weather does bother le. Stay cool, drink lots of water - not carbonated beverages!!!! Limit salt, etc, etc, as they say.
I am 4 1/2 yrs out with le diagnosis. You will get into the routine. But I am still working 40 hours per week and getting along ok with the le. God bless!!!!
Susan B.
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Joined: Thu Jun 15, 2006 8:32 pm

Postby patoco » Sat Jul 29, 2006 9:15 pm

Hi Uscmom

Super welcome to our family :!: :D

If the garment is starting to hurt and be tight, sounds like it needs to be readjusted some. Please do talk to your therapist about this as it really can be counter productive if it doesn't fit correctly.

I have always had leg lymphedema, but a coupl years ago it started in my arms as well. One thing I do that really does help is self ram massage.

Our page on arm lymph may have some ideas that can help too.

Arm Lymphedema ... hedema.htm

Do you wrap your arm also?

We have this illustrated page on wrapping.

How to Bandage Arm Lymphedema - Illustrated ... rated/1145

Big congrats too on the upcoming 3rd anniversary :D :D :D :wink: :!:

Look forward to getting to know you and in your participation. Please don't hesitate to ask any questions and concerns.

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Postby uscmom » Tue Aug 08, 2006 11:26 am

thanks for the reply. I am sorry we all have to go through this. But the Lord has a reason. Thank you for the arm exercises I'm going to try them maybe it will get the fluid flowing along with the massages. Is there any chat rooms on this site. I would love to talk to others. I feel so alone with this. I am trying to go back to school, so I want worry about all this. But it is still there. Hope to hear from you soon uscmom
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Joined: Sat Jul 29, 2006 3:35 pm

arm sleeves

Postby ro81nm » Mon Sep 25, 2006 6:15 pm

I have to start off by saying that cancer sucks! And then when you are finished with treatment and want life to go back to normal they have to hit you with lymphedema also? Life doesn't always seem fair does it? I was diagnosed with BC at 21. I developed my lymphedema a few months after I finshed treatment. It's almost worse than BC. At least that had a clear path and end point. I was even put in a Hyperbaric Oxygen study at U Penn hospital.

I think you're right about everything happening for a reason though. As a result of my devastation from my diagnosis, I am doing something that I think will help other people with arm lymphedema. I am making new compression sleeves that are more comfortable and fashionable than current choices. Please check out my website and let me know what you think!

Stay strong!

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Joined: Mon Sep 25, 2006 5:34 pm
Location: Philadelphia

Postby patoco » Mon Sep 25, 2006 6:58 pm

Hi Robin

Wanted to welcome you and just say thanks for your personal experience note about the hyperbaric oxegon treatment.

Love your website!!!!!!!!!!!!!!!! :!: :!: What a totally cool idea :idea:
Here's to wishing you and your partners the best success! :wink: don't forget to add Lymph People on your links page :D

We have lots of discussions in our forums about clothes, fashions, shoes and the near impossibility of finding anything.

Good to have you here.

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new to the group but not LYMPHEDEMA

Postby colleensav » Tue Feb 27, 2007 12:44 pm

hello my name is colleen, i also have le in my right arm and it is murder i have been dealing withit for the past seven years and it gets worse. for the past three years i have had an open wound in my arm pit about the size of a lemon and dealing with it is not easy. i am always being told that it is in a bad place so it is not healing properly. I had a skin draft done in sept. of 2005 to close it off as soon is i went for my first follow up appointment the doctor undressed the wound and it burst open and has been that way every since they want to do another but i am tired of going through and just sort of gave up until i stumble on this web site today i felt hopless but reading the stories of women like me makes it better because i know that i am not alone in my battle to overcome this live of torture.
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Joined: Tue Feb 27, 2007 11:55 am

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