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09-15-2004, 09:35 PM
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#1
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Guest
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Just wanted to give the heads up that if you experience this swelling there is relief. I am currently being treated for it, and the response is almost immediate. I just figured this was something I was going to have to learn to live with.
el
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09-15-2004, 10:46 PM
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#2
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Guest
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Eleanor, I am glad to see that you are getting an immediate response to your lymphedema. Would you tell me how you are being treated for it? And is it only mild lymphedema? Thanks.
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09-15-2004, 11:36 PM
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#3
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Guest
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Thanks for the good news. Could you please share what exactly they did for you? I have a close friend that has it and she is only 35. She is not happy and is always wearing her sleeve because it seems to never go down. Thanks again.
Kathy
PS Does anyone take herbs for this?
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09-16-2004, 04:59 AM
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#4
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Guest
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I had a mild case 2 weeks ago and it is almost all gone. (I'm 34 and am lifting 2 young children several times a day). I'm doing nanual drainage massages with a therapist and some sleeve wearing, but mostly faithful light armweight exercises did it. 10 to 20 reps with 3 lb weights twice a day for 5 or 6 exercises. I've scanned these in for a few of my friends - if anyone wants a copy send me and e-mail and I will shoot them over. (They're probably copyrighted, but oh well, I could just as easily describe them to you as well).
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09-19-2004, 11:50 AM
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#5
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Guest
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Hi Eleanor,
I had to go to a PT to learn about lymphadema and had therapy for my range of motion after my masectomy.
The PT told me that if you catch it early like you see a red spot or small lump, to call right away and that (I think Keflex) or another type of big guns antibiotic will stop it right away. You take it for a few days.
Why that would work? I don't know. Just thought I would share it with you. Hope it gets better. take care k
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05-12-2008, 02:58 PM
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#6
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Guest
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Lympadema untreated
My 84 year old mother-in-law has severe lymphadema in her arm. She wears a sleeve, but only when it's convenient. Now her arm is so large that she said it "weeps". I've never heard of this. Can anyone tell me if that's really bad, or is she just in need of therapy. Thank you,
LR
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05-12-2008, 06:38 PM
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#7
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Senior Member
Join Date: May 2006
Posts: 221
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Now her arm is so large that she said it "weeps". I've never heard of this. Can anyone tell me if that's really bad, or is she just in need of therapy.
LR, it sounds like both (bad and in need of therapy). It sounds miserable and it needs treatment before an infection starts or permanent damage is done. There is a lot that can be done for lymphedema, but not just any provider knows how to handle it.
Right now she needs to get a referral, asap, to a certified lymphedema therapist who will know what to do, and will teach her how to care for her arm. She should be able to get the referral from any of her docs, but an oncologist or surgeon should definitely know where to refer. She should not settle for less than a certified therapist. Most are also physical therapists or occupational therapists. Does she live near a decent-sized city?
Please let us know how she does, okay?
Debbie Laxague
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05-12-2008, 07:00 PM
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#8
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Senior Member
Join Date: Sep 2005
Posts: 161
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I'm sure these first 6 posts are not from real members.
__________________
Diag. Oct. 2004 age 54 left breast
Stage 1 grade 3; 6mm IDC; unknown amount of DCIS
with comedo necrosis; node neg.
Nottingham Grade 7/9
ER 91% PR 62%; Her2 3.6 by ICH; KI-67 35%
Nov 2004 Lumpectomy; SNB failed so had
full axillary clearance;
Dec 2004 2nd lumpy for clean DCIS margins.
Jan/Feb 2005 4 A/C dose dense;
33 rads finished 6/2005;
Began 5 years Arimidex in 6/2005
No Herceptin
9/2007 Quit Arimidex due to severe side effects.
NED
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05-12-2008, 07:15 PM
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#9
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Senior Member
Join Date: Sep 2005
Location: Mountains of Virginia
Posts: 2,267
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Old Thread
I think the first six posts are actually from an older thread that looks different because the site has undergone a conversion since they were posted. Sometimes when old posts are brought forward, it is a bit confusing.
__________________
Rhonda (Sassy)
dx age 45
DX 2/15/05 Stage IIb (at surgery)restaged IIIa
Left mast .9cm tumor 5 of 14 nodes
Triple Positive
4 DD A/C
12 Taxol/Herceptin
33Rads
Strange infect mast site one year aft surg, hosp 1 wk
Herceptin for total of 18 months
Lupron Monthly 4 yrs
Neurontin for aches, pains and hot flashes(It works!)
Ovaries removed 11/09 stop Lupron and Neurontin
Arimidex 6 yrs (tried Femara, no SE improvement)
Tried Exemestane-hips got so bad could hardly walk
Back to Arimidex for year seven
Zometa 2X Annual for 7years, Lasix
Stop Arimidex 5/13
Stop Zometa 7/13-Bi-lateral Stress Fractures in Femurs from Zometa
5/14 Start Tamoxifen
3/15 Stem cell transplant to stimulate femur bone growth/healing
5/15 Complete fracture of right femur/Titanium rods both femurs
9/16 Start Evista stopTamoxifen
3/17 Stop Evista--unwelcome side effects!
NED and no meds.......
14YEARS NED!
Last edited by sassy; 05-13-2008 at 08:27 PM..
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05-13-2008, 08:08 AM
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#10
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Senior Member
Join Date: May 2008
Posts: 62
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Yes, yes, yes it can be treated! My arm blew up when I tried to go back to cross country skiing. A lot of other junk happened while I was trying to get it under control, I have carpal tunnel syndrom, too.
But do get a referral. Be persistent. I thought my insurance, Kaiser, had no one. Turns out there are five trained specialists in Kaiser Denver alone.
I finally got to see a therapist last week who taught me the massage and I already see improvement. If left untreated, the skin stretches and the proteins from the lymph get stuck, making it harder to get the swelling down.
Carla
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05-13-2008, 11:47 AM
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#11
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Senior Member
Join Date: Nov 2004
Location: Misty woods of WA State
Posts: 4,128
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Note that the first 6 posts are from 2004.
Jojo is one of our dearly departed and she, Kristen and Rozebud used to be quite active on this board.
Joe has also reinstituted posting by "guests."
My right hand has a small amount of lymphedema mostly between my knuckles on the back of my hand. I have a glove, but only use it if it gets beyond a certain point. Normally is barely noticeable. Did get treatment for it a while back and it is much better.
__________________
"When I hear music, I fear no danger. I am invulnerable. I see no foe. I am related to the earliest times, and to the latest." H.D. Thoreau
Live in the moment.
MY STORY SO FAR ~~~~
Found suspicious lump 9/2000
Lumpectomy, then node dissection and port placement
Stage IIB, 8 pos nodes of 18, Grade 3, ER & PR -
Adriamycin 12 weekly, taxotere 4 rounds
36 rads - very little burning
3 mos after rads liver full of tumors, Stage IV Jan 2002, one spot on sternum
Weekly Taxol, Navelbine, Herceptin for 27 rounds to NED!
2003 & 2004 no active disease - 3 weekly Herceptin + Zometa
Jan 2005 two mets to brain - Gamma Knife on Jan 18
All clear until treated cerebellum spot showing activity on Jan 2006 brain MRI & brain PET
Brain surgery on Feb 9, 2006 - no cancer, 100% radiation necrosis - tumor was still dying
Continue as NED while on Herceptin & quarterly Zometa
Fall-2006 - off Zometa - watching one small brain spot (scar?)
2007 - spot/scar in brain stable - finished anticoagulation therapy for clot along my port-a-catheter - 3 angioplasties to unblock vena cava
2008 - Brain and body still NED! Port removed and scans in Dec.
Dec 2008 - stop Herceptin - Vaccine Trial at U of W begun in Oct. of 2011
STILL NED everywhere in Feb 2014 - on wing & prayer
7/14 - Started twice yearly Zometa for my bones
Jan. 2015 checkup still shows NED
2015 Neuropathy in feet - otherwise all OK - still NED.
Same news for 2016 and all of 2017.
Nov of 2017 - had small skin cancer removed from my face. Will have Zometa end of Jan. 2018.
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05-19-2008, 07:44 PM
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#12
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Senior Member
Join Date: Apr 2007
Location: Mississippi
Posts: 600
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Stephn, What type of glove? Brand? I have tried a regular therapeutic glove and it hasn't helped much. My first two fingers swell some and also between my knuckles. What treatment did they do?
Leslie
__________________
In the world of destiny, there are no statistics.
Jan. 26- mammogram and ultrasound- suspicious lump
Mid-February- lumpectomy, infiltrating ductal carcinoma ~4.5 cm and a 1 cm DCIS, did not get clear margins, did not check lymph nodes
ER+/PR+, her2 +++, nuclear grade 3 of 3
February 20-PET scan showed something on liver. No biopsy.
March- Started carboplatin, herceptin, taxol on a four week cycle
May 3- Pet scan, with intent to do a biopsy, found nothing, liver or breast- no biopsy because there is nothing to biopsy
June 21- new onc, very concerned that there had been no biopsy,
June 18th-CAT scan, bone scan-negative
August 7th - Brain MRI-negative
August 9th- mastectomy, all pathology negative
January 2008 still NED! New oncologist -herceptin for full year after chemo- until July, and tamoxifen---negative scans since May '07
July 2008-Finished Herceptin!
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