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Old 12-29-2008, 10:21 AM   #1
Soccermom
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Location: Bradenton,FL
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Thumbs up FYI, Lymphadema Helpline established~

The Patient Advocate Foundation (PAF) with support from ImpediMed Ltd
launched the Lymphedema CareLine in December 2008. This is a toll-free
patient/provider hotline designed to provide information and
assistance to
breast
cancer patients who are dealing with post-treatment side effects such
as
lymphedema. The service provides English and Spanish support. The
hotline
can be
accessed at 1-866-949-1978 or _www.LCL.patientadvocate.org_
(http://www.lcl.patientadvocate.org/) . For additional information
contact
Beth Darnley, Chief
>Program Officer at (757) 952-1365.
>~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
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Old 12-29-2008, 11:02 AM   #2
LAURIE
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thx for the info. My lymphedema is the thing that bothers me the most about having BC. Is that one constant reminder of what I went through. I want a cure now. Nothing I have done or tried has made a difference.
__________________

Laurie
Diagonsed 8/10/06 (found own lump)at 35
Her 2 +++, er-/pr-
4 A/C 8-29-06 to 11-06
Lumpectomy, node dissection- 11/30/06
Pathology report stage IIIC
1 tumor 3 cm
10 of 15 nodes +
12 Taxol 12/18/06-03/06/07
Herceptin 12/18/06- 12/11/2007 done!!! yeah!!!
33 rads started 3/22/07, done!! yeah!! 5/07/07
Lymphedema diagonsed 2/1/07
BRCA1/BRCA2 negative
port out 1/10/08
pregnant after 6 yeas of trying- due mid feb.
Ryder David Kessel Hunter born feb.6th 2009

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Old 12-29-2008, 11:07 AM   #3
Soccermom
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You are most welcome ,Laurie..I hope they having something up their sleeve that may make a difference for you!
How are you feeling otherwise? When is the big day!?

Hugs,Marcia
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Old 12-29-2008, 08:22 PM   #4
madubois63
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Thanks Marcia! I am forwarding this info to my bff (how cool am I - I have a bff), Liz. She is Ned (thank God), but suffers really bad from just the worst case of lymphedema.
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Maryann
Stage IV Inflammatory BC 1/00
Mod Rad Mastectomy 24nod/5+
Adriomycin Cytoxin Taxol
Tamoxifen 4 1/2 yrs
Radiation - 32 x
Metastatic BC lung/liver 10/04
thorocentesis 2x - pleurodesis
Herceptin Taxatiere Carbo
Femera/Lupron
BC NED 4/05
chemo induced Acute Myeloid Leukemia 5/06
Induction/consolidation chemo
bone marrow transplant - 11/3/06
Severe Host vs Graft Disease of liver
BC mets to lung 11/07
Fasoladex Herceptin Zometa Xeloda
GVHD/Iron overload to liver
Avascular Necrosis/morphine pump 10/10
metastatic brain tumor
steriotactic radiosurgery
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Old 12-30-2008, 08:47 AM   #5
dlaxague
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lymph node replacement? Avastin?

Did anyone else see the article about surgery that took nodes from somewhere else (I think the groin), and put them in the axilla with microsurgery techniques, curing lymphedema in 5 of 6 people? I think that was it, anyway. But I can't find it. It was either an SABCS poster or it appeared on BCN news recently, but a search of those sources doesn't find it. Am I dreaming?

I did find another one that I was looking for. A small study/discussion of anecdotal reports of women with existing lymphedema who noticed an improvement in same when they were on Avastin (bevacizumab). That led to a pilot study that is ongoing. Previously there had been discussion that this class of drug (but the enhancers rather than the inhibitors - vascular endothelial growth factors) might help re-establish lymph vessels and decrease lymphedema. The concern was that something that promoted vascularization might also promote cancer growth. So how weird to see that this theoretical treatment might actually be theorizing in the wrong direction and that inhibition of vegf might help lymphedema. Go figure. It's poster #6142 in the index but when I try to pull it up, I get another poster altogether. Here's the abstract but it doesn't have the results that are promised for 12/08: http://www.posters2view.com/sabcs08/...u=SABCS08L_105
or tinyurl:
http://tinyurl.com/89tvmt

Debbie Laxague

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Old 12-30-2008, 10:40 AM   #6
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thx dlaxague, fascinating study!

Marcia
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Old 04-06-2011, 09:23 AM   #7
Soccermom
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Re: FYI, Lymphadema Helpline established~

Wanted to bump this up and add a link for those interested in "vascularized lymph node transfer" VLNT for Lymphadema...

http://drmarga.com/
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