Lymphedema

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Tricia Keegan
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Re:Lymphedema - Sunday, June 28, 2009 3:39 PM
Thanks for posting this news Sandy, it sounds an enlightening study and long over due!

B4, Fantastic info and thank you for taking the time in educating us more on this:)
Thankfully so far it's not a problem I've had although did see a specialist some time ago for baseline measurements as I thought I may be developing it. I was fortunate and okay but do sympathize with anyone who develops this after bc.
Thanks again!
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
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marsh
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Re:Lymphedema - Sunday, September 27, 2009 3:13 PM
in may of '08 i had a lumpectomy and SNB, 1 or 2 nodes only....the surgeon said i didn't even have to worry about needles or blood pressure cuffs, etc because the node removal was so minimal.  but i worry, so i still don't let them do anything on that side.

anyway, after i finished my radiation, in january or february of '09, i developed lymphedema in my radiated boob, fullness, alot of swelling, shiny skin and painful at times.  minimal in my hand, i  could feel tightness and tingling, but swelling wasn't visible. 

after all that time since surgery, i thought maybe somehow it was a seroma, but that would be a long time out from surgery.  lymphedema didn't occur to me, they said i didn't have to worry about it, but the surgeon ultrasounded it to be sure nothing was wrong and they said it was lymphedema.  i think it was caused more by the tissue changes due to radiation, maybe?  i never knew you could/would get it in your breast.

i started going to a lymphedma specialist who was wonderful, she taught me some massage and stretching, made me a 'massage pad' that i can wear inside a spandex-y tank top at night.  i still was having problems with it, not as bad but it would still hurt and be swelling up by the end of the day.  she said we could try one other thing....she put two strips of 'kinesio' tape across my boobs, cut into strips on the end like fingers, the  'fingers' go on the bad boob and then the strip runs across the other one over toward the good armpit.  BINGO!  its pretty much like i never had it.  but...i was out of the tape once, and it flares right up again.

she also fitted me for a sleeve and glove for if i ever fly or develop anything more going into my arm, she said you can't be too careful.

ElaineQW
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Re:Lymphedema - Sunday, September 27, 2009 4:48 PM
I'm lucky in that I have had no experience with lymphedema.  But I wanted to remind you that they've now changed their tune and decided that exercise, including lifting weights, is good therapy and possibly prevention.  

Resistance-Training, also known as strength training exercises, require that muscles exert a force against some form of resistance. Research has determined that activities such as bench pressing are beneficial.
It is believed that this type of exercise is beneficial for those with lymphedema because the contraction of the muscles causes a pumping action that helps to move lymphatic fluid away from the affected area and back toward the chest. These exercises also encourage deep breathing to ensure an adequate supply of oxygen to the tissues. This exercises the chest and abdomen in a manner that stimulates lymphatic drainage.

Hug,
Elaine

 A person's greatness is the power to stand alone;to be able to make her own choice; in action,to write anew her own law; to choose her own sacrifices; run her own dangers; win her own freedom; venture her own destruction; to choose her own happiness 
 






JoGrif316
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Re:Lymphedema - Monday, September 28, 2009 12:32 AM
Just wanted to add my 2 cents...

I met a young woman on the Seattle 3-day walk 2 weeks ago who had her wrist and hand all bandaged.  Thinking she had fallen or something, I asked her how she had hurt it.  She said she had suddenly developed lymphedema during a training walk a few weeks before.  She'd only had sentinal node biopsy and radiation....so that reinforced for me that there is a risk with any breast damage.  I try to be careful (always have blood draws, etc., done in the other arm), but I tend to become complacent about the risk because I "just" had SNB.

Joyce 
Portland, OR. DX: 6/09/05 IDC lb Age: 54 PR/HR+ Her- Lumpectomy/SNB 6/22/05 Nodes Neg! 33X Rads Comp 10/12/05 Tamoxifen: '05-'10 PT for lymphydema in breast '06 BRCA Neg 7/08! Tamoxifen induced uterine issues '07-'11 Total LA hysterectomy 12/11

B4
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Re:Lymphedema - Monday, September 28, 2009 2:53 PM
Elaine, hello!
I believe you're referring to the recent publication in the New England Medical Journal of a study by Dr. Katherine Schmitz, in which she used two groups of women with lymphedema to compare the results of a well-supervised weight-training program compared to no exercise. The media got quite excited about it, but their reporting (even in the New York Times) was seriously flawed. The impression given in the press was much as you stated, but Dr. Scmitz has been horrified at this degree of over-simplification and out-and-out misinterpretation.

The group of women who did the weight lifting were expertly fitted for compression sleeves and gloves which they used during and after exercise. They had free access to a group of very well-trained lymphedema therapists, and their weight-lifting was totally supervised by specially educated weight trainers. They were followed throughout the study period, even called by phone by the trainers to check on their progress. None of that special care is available to us, especially not the ease of access to therapists and REALLY not the lymphedema-trained weight trainers. Even exercise "experts" who work at our Cancer Centers rarely understand the risk of lymphedema. So our ability to duplicate these factors of safe exercise is essentially nonexistent.

But the big issue is, the study absolutely did NOT show that weight training improved the flare rate or progression of lymphedema in the exercise group. All it showed is that their flare rate and progression was not WORSE than the non-exercising group, and that as a result of the exercise they became stronger. That was the big "breakthrough" of this study: that women who have lymphedema could, with careful supervision, do weight lifting without significantly worsening their lymphedema, providing they proceeded extremely slowly and had adequate therapist oversight.

Dr. Schmitz is concerned with correcting these mis-perceptions and will be writing some clarifications of her study interpretation for the next newsletter of the StepUp-SpeakOut.org website. You can go to their home page and sign up for their email newsletter if you're interested.

A second section of Dr. Schmitz's study will be published soon. It looks at weight-lifting for women AT RISK for lymphedema who have not yet developed it. Under no circumstances is weight-lifting being advanced as either a cure or a preventative for lymphedema -- the idea is to help us reduce our fears of exercise by showing that it can be done with careful supervision and sensible precautions without worsening our risks.

You are right, Elaine, that exercise provides the primary pumping action for our lymph system, but it also draws more lymph fluid into the exercised area, potentially causing congestion in the compromised arm or chest. That information has been known for a very long time, not as a result of this study. So exercise is a double-edged sword, both a benefit and an added risk. In fact, in Dr. Schmitz's study group, some women had to be eliminated because the weight lifting caused unresolvable swelling problems. It's clearly no one-size-fits-all conclusion, and the real message is: don't be afraid, but DO be very careful! What we could really use now would be a study that showed what form of exercise is actually best for people with lymphedema.

Stay strong!
B4





Tricia Keegan
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Re:Lymphedema - Monday, October 05, 2009 7:12 PM
I could'nt agree more B4, and hope we see that in the near future but wanted to thank you for posting such great info as always!
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
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lymphdema5
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Re:Lymphedema - Saturday, November 14, 2009 12:19 PM
This is the greatest information on lymphdema i have seen in five years, I intend to send it to my radiologist, he thought i had IBCmy surgeron who never gave me info on axilla dissection and lymphdema he dx it radiation matitis, to my radiation doctor who looked at it and had to go ask his senior partners they didn't dx it either, to my wonderful oncologist who dx as radiation matitis, but never lymphdema date of lymphdema 12-18-04 date i asked to be send to CDL therapy 2-18-08. I did ask my oncologist why he never sent me he said he didn't believe it would help me, I have yet to sit down with radiation doctor however he and i did coverse threw email it wasn't pretty, and my talented surgeon he no longer takes my insurance, excellent surgeon, office staff needs educated. So here is what my oncologist helped me with since all these i have a mental disability that causes me to relay every detail and my commuciate skills and grammar are not up to par anyways so i don't piss off the doctors I SAY THIS IS FOR EDUCATIONAL PURPOSES,

B4
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Re:Lymphedema - Monday, November 16, 2009 1:04 PM
Hello, Lymphedema5,
I think it's wonderful that you will be educating your doctors -- good for you! We all can help make a difference to the women who come along after us, if we'll do what we can to help our doctors and nurses learn about lymphedema.

Here's a web page about lymphedema especially for doctors and nurses, in case you'd like to copy it to send to them:
http://www.stepup-speakout.org/what_we_need_healthcare_providers_to_know_about_lymphedema.htm

I'm really sorry you had to wait SO LONG for treatment for your lymphedema. How are you doing with it now? Did you find a good therapist? My doctors were really slow about sending me for help, too, and when they did it was a therapist who wasn't very well trained. I had to work hard to find a better one, but now that I have a good one I'm really doing well. Hope you are too!
B4

lamkins514
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Re:Lymphedema - Tuesday, December 15, 2009 1:01 AM
[color=#0000ff size=2 font="ms sans serif"]hello.  I am going on 2 yrs post lumpectomy, chemo & radiation treatment for insitu ductal carcinoma.  My tumor was very tiny but just bordered whether or not to get chemo. i went for it since i figured it would be best to do everything i could.  i am now on Femara treatment, about 1 yr or a little more.  I am, from time to time, having problems with swelling (almost like what I remember premenstrual tenderness was way back when)..  I feel swollen & sore on that same side that I had the issues.  I also had my lymph nodes on that same side out - my surgeon thought it was best though my pathology came back negative.  I have had a mammography just two months ago & it came back clear - however, I am not still dealing w/ the soreness/slight swelling of that breast.  Is this something common or should I be worried?  I am 52 yrs. old and I also had a seroma on the surgical breast about a year ago that resolved on its own.  I'm wondering if this is also a seroma ?  I just need some opinions.  Thank you.

B4
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Re:Lymphedema - Thursday, December 17, 2009 5:26 PM
Lamkin, hello,
Of course none of us can diagnose this, but since you're posting on the lymphedema thread I'd guess you're wondering if it could be lymphedema, yes? Well, it sure could be. Node removal, radiation, and seromas are all factors that predispose us to the development of lymphedema, and breast lymphedema is fairly common. You'll want to check with your doctor, of course, but from there you might want a referral to a well-trained lymphedema therapist who's experienced with breast lymphedema (it's called "truncal" lymphedema). S/he will be able to help you reduce the swelling and keep it in control. Here's information on finding one near you:
http://www.stepup-speakout.org/Finding_a_Qualified_Lymphedema_Therapist.htm

And here's information about truncal lymphedema:
http://www.stepup-speakout.org/breast_chest_trunckal_lymphedema.htm

I sure hope you get answers and real relief soon!
B4

lymphdema5
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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

MiachelJ
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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!!!!!

vk1up
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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,
Vicky
Dx IDC Left Breast 4/09
Bilat mast with expanders 6/09
PR+ER+Her2-
Grade 2/2.5cm
OncoDx15
Brca-
4tax/4cytox-DONE!
recon to follow

jojomomcat
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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)!

thisandthatkath
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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
Hi,

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

B4
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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!
B4

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

RP66
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Re:Lymphedema - Sunday, September 26, 2010 8:27 AM
Jojopmomcat,
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~
Thanks
Rene'~OH
dx 10/06 @ 40 yrs old
stage IIIa/grade3, 7/10nodes+
er/pr+,her2+
a/c/t&herceptin
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! 
cp:RenePetrovich

B4
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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.
(((((Hugs!))))),
B4

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