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Re:Lymphedema - Wednesday, January 27, 2010 7:10 PM
Hey Ruthie, 1956 I had parital mast chemo, radiation, total axilla dissection 1/18nodes were positive, I was not send to lymphdema therapist until Feb 2008 i woke up Dec 18, 2004 two months after finishing last of radiation with major swollening in effected breast and arm was treated with antibotics and then left flying in the wind with lots of prescription medications. I do manual drainage therapy twice a day for one hour, and follow all the rules and this condition has left me unable to work it is chronic uncurable condition, i thank myself for not giving up four years and found this therapy on my own sadly my doctors were uneducated about this, love my oncologist still see him he admits he didn't believe it would help me. Fact is if i would have been given CDL therapy when it first developed i might have not had to deal with it going into secondary and really been able to work or commit to any activity without saying i can't what job lets you take a hour off twice a day and elevate your arm, breast so car rides longer then hour  and social functions are limited to i have educated my doctors and will continue to spread the word fact is any one who has had any lymphnodes removed then has had six weeks of radiation has a high high rate of this condition hope this helps anyone

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Re:Lymphedema - Thursday, January 28, 2010 12:08 PM
Hi everyone :)!  I am scheduled for my bilateral mastectomy, left sentinel node biopsy & reconstruction on Feb 12th.  Wanted to know if there was anything I could do immediately after surgery that would make things better, lessen the chances of lymphadema, etc.?  Thanks y'all!!!!!

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Re:Lymphedema - Saturday, January 30, 2010 10:15 AM
Hi MiachelJ,
I had left sentinel node biopsy also. My oncologists office has a certified lymphedema therapist in the office. I went to her the first time for baseline measurements and education.
The second time for measurements again and was given an exercise program using the rubber bands for resistance.

I was told things were good and I could proceed with my exercise as normal. Not to lift weights over 10 pounds and get a compression sleeve should I fly.

I know some of the other ladies did physical therapy. I think that is probably a great idea also.

Anyway, check with your onc and see if they can recommend 
a certified lymphedema specialist.

Take care,
Dx IDC Left Breast 4/09
Bilat mast with expanders 6/09
Grade 2/2.5cm
recon to follow

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Re:Lymphedema - Friday, April 23, 2010 9:09 PM
Bringing this back up because...
I had mild lymphedema first time around, then went 2 years with nothing. Even lost my compression garments! Returned to chemo and after 6 months - WHAM! Severe swelling in not only my arm, but my leg too. Am starting PT just to eliminate the excessive fluids so I can be fitted for new garments. Just want to remind you - be ever vigilant.
You can get anywhere in life you choose, as long as you wear red high top shoes.

return trip, triple neg (by med terms only - triple positive in attitude), 17 nodes and gaining, clinical trial pro, and too darn mean to let it win (hence the nickname Mean Jolene)!

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Re:Lymphedema - Sunday, June 13, 2010 12:13 AM
Hello out there.  Battling lymphedema and reoccurring infections does anyone out there know of a connection between lymphedema and an infection that is not cellulitis?
Tricia Keegan

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Re:Lymphedema - Sunday, June 13, 2010 11:55 AM

I can't help with your question but wanted to suggest starting a new thread so other's will see it more clearly:)
Tricia Keegan...From Ireland Dx July '05 IDC 3/9 nodes pos..triple positive..a/c x 4..Taxol/herceptin x 12
Herceptin 1yr ..rads x35 oophorectomy Aug '06
Currently taking Arimidex /Zometa 1 x yearly
Carepage- survivortricia

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Re:Lymphedema - Sunday, June 20, 2010 8:15 PM
Kath, there are other infections that typically occur with lymphedema, such an erisypelas. What kind of infection are you having trouble with?

The lymph system is part of the immune system, so crippling our lymphatic system does present other risks as well. An infectious disease doctor who's familiar with lymphedema should be able to help (but can be difficult to find!) With recurrent infections it's sometimes helpful to prescribe a low dose of antibiotics over a longer term.

If you could be more specific I might be able to put you in touch with more information. Let me know how I can help.

Hoping for prompt relief for you -- enough already!
Ruth Coates

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Re:Lymphedema - Monday, July 19, 2010 5:51 PM
For prevention of recurring infections of whatever type, my onc has prescribed an antibiotic that should I feel something coming up (you almost always know when its not right) or if I see the red ugly color returning to my arm or elsewhere, to start the antibiotic right away and then call her.  Infections for us are nothing to blow off for sure.  It can ruin your whole day for sure! lol

So an antibiotic as a standby Rx can be a lifesaver.

Sorry i have not been around...I should be more vigilant here as these things come up...having a few LE problems my self which have slowly resolved, again, :)  Be sure to get measured for a sleeve and gentle use of that arm is a must.

To MiachelJ:  I would recommend a LE specialist to help you with recovery from your bilat mast.  You have so many muscle issues after surgery that these professionals can help with in helping you prevent LE.  They helped me so much more than the video and pillows the hospital gave me.  They can order a sleeve for you for after treatment is done that you can wear traveling (and not just on an airplane).  If this is helpful or if you have more questions write me. :) anytime!
Love Ruth
Paw Paw MI 
6/06 IDC,7/06 IBC (Inflammatory BC) RT
2 lumpectomies still no clear margins
chemo 8/06-12/06 
Bilat mast 1/07
rads 2/07, arimidex 6 mos, 1/08 femara, 10/08 aromasin
6/10 tamoxifen, now Rheum Arthritis
Pet scan NED x3 yrs

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Re:Lymphedema - Sunday, September 26, 2010 8:27 AM
I am curious about your leg swelling.  I have recently noticed my thigh is bigger on my b/c side and went to lymph therapist.  Did it help your leg?  do you still have problems?  I am really surprised at this and I'm very worried.  Looking forward to hearing more from you~
dx 10/06 @ 40 yrs old
stage IIIa/grade3, 7/10nodes+
rbrst mast/hyst 3/07
33rads 6/07 Tried the AI's for 18 months & switched to Tamoxifen~much better for me! 
Bilateral Tram-flap 4/08 Revision-left 7/08 
New surgeon revisions: 5/09-8/09-8/10  
Dec 2010  Finally finished! 

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Re:Lymphedema - Monday, September 27, 2010 3:07 PM
Rene, hello,
I'm so sorry about these new worries -- you've already dealt with so much, you must just want it to end, for goodness sake! Grrrrr!

I'm hoping the therapist was a help. Did she think it was lymphedema? It does develop sometimes in legs or abdomen following tram-flap surgery, but if you get on top of it quickly it's easier to manage and control. And since you're scheduled for more surgery you'll definitely want to get on top of this quickly.

Please keep us posted.
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