I have been reading about this new surgery, and wondered if anyone out there has had it? It does not sound main-stream yet, but I now it has been performed in New Orleans and in Los Angeles. It can be done in conjunction with a DIEP as well....
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LindaLou53 Joined: Jan 2006 Posts: 550 |
Oct 17, 2009 12:13 am
LindaLou53 wrote:
Liz, I bumped up some older threads on Lymph Node Transfer that you might find helpful. It is an area of great interest but still very experimental and no study data available yet on long term effects or who is best candidate for this type of surgery. Linda Life is not measured by how many breaths we take...but by the moments that take our breath away!
Diagnosis: 11/21/2005, ILC, 5cm, Stage IIIc, Grade 1, 23/23 nodes, ER+/PR-, HER2- |
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Bahons2 Joined: Mar 2008 Posts: 97 |
Oct 18, 2009 05:15 am
Bahons2 wrote:
Hi mamayav I've been trying to pm you about this topic - seems I can only reply to ones people send me and not initiate one (?). Please can you pm me? X S |
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ntresler Joined: Nov 2009 Posts: 1 |
Nov 14, 2009 03:49 pm
ntresler wrote:
I have had the lymph node transfer in New Orleans in May 09 and I have experienced a significant reduction in the amount of fluid in my forearm and a reduction (smaller than forearm) in my hand. On a good day, my hand just looks slightly swollen and my arm looks completely normal. On a bad day, my hand is more swollen but my arm still looks completely normal. I just got back from a trip where I kayaked for several hours with just a hand compression garment on and had no adverse fluid build up. I flew home the next day and completely forgot to wear any compression garment. I was shocked that I had no change in my hand or arm! I am very happy with the results of my surgery and especially the doctor who did the surgery. |
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katiejane Joined: Jul 2007 Posts: 346 |
Nov 15, 2009 12:42 am
katiejane wrote:
ntresler, I'm considering this surgery when I have a DIEP. I have bilat. arm and trunk LE and it is a real problem. I am so tired of the constant soreness and discomfort! Did the transplant decrease any pain and discomfort you were experiencing? Do you still need to have LE massage/MLD? Who did your surgery? Any swelling or problems with the donor site? I'm very excited at the possibility of some relief from LE. And I'm pleased that it has helped you as well! Please keep us posted on your progress! Katiejane Diagnosis: 6/13/2007, ILC, Stage IIa, Grade 3, 3/28 nodes, ER+/PR+, HER2- |
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Bahons2 Joined: Mar 2008 Posts: 97 |
Nov 15, 2009 07:16 am, edited Nov 15, 2009 07:16 AM
by Bahons2
Bahons2 wrote:
ntresler Would love to hear more about this. And can you also pm me? Thanks X S |
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Meggy Joined: Jan 2008 Posts: 225 |
Nov 20, 2009 09:21 pm
Meggy wrote:
Hi ladies, do they take nodes from your groin/upper leg area? I'm so afraid of developing lymphedema in yet another part of my body (already in both arms and both sides of back).... Triple Negative IDC Neoadjuvant chemo 2/08 of 4 dosedense A/C then 4 Taxol, Bilat 6/08, then 2 more AC then 4 Carbo/Taxotere Node Positive (5+) but exact number unknown due to neoadjuvant chemo
Diagnosis: 2/4/2008, IDC, 2cm, Stage IIIa, Grade 3, ER-/PR-, HER2- |
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Binney4 Joined: Aug 2004 Posts: 4,901 |
Nov 20, 2009 09:53 pm
Binney4 wrote:
Meggy, yes, they harvest lymph nodes in that area. There's some very recent research in the UK (Stanton) that seems to indicate that those of us who develop lymphedema following bc surgery have a general inadequacy in our lymph systems -- they're already operating very near capacity when the trauma of surgery takes place, and that tips the balance. Others have more leeway in the capacity of their lymph system, so perhaps they're more likely to remain free of this condition. More research is necessary to substantiate this correlation, and there's currently no easy way to determine which is which before treatment, either. But there is a real basis for concern about developing lymphedema in legs or genitals with further trauma to the lymph system. I understand Dr. Massey in NOLA is conducting a study of her node transplant surgery, but I don't know whether it covers this possibility or whether it's only concerned with the outcome in terms of the affected arm. I also haven't heard how long the study will look at patients, and lymphedema can develop months or years out. So...more research would be especially helpful for this question, but at the moment we don't have any real answers. Be well! |
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Nordy Joined: May 2009 Posts: 616 |
Nov 21, 2009 01:30 am, edited Nov 21, 2009 01:33 AM
by Nordy
Nordy wrote:
I now know of 3 people who have had this surgery -- one had it with Dr. Massey on the same day I had my reconstruction in NOLA, so I actually know her and have spoken to her since. She has had extremely good results and is very happy. She is now 3 months out, so still early on. My doc in NOLA (Dr. S) told me that they do lymphoscintography prior to the surgery - not only to map out the best areas to take nodes from, but also to see if you still have drainage in the affected side that is working - if that is the case they won't do the surgery but will have you go for more lymphedema therapy to improve that drainage. He also told me they take a very small bed - between 3 to 5 nodes and use the mapping to decide the best area. Given all of this and as much as I want my arm to be more normal, I am still holding back for the same reason that has been given: I still worry about risk of a lower extremity lymphedema. So... for now I carry on doing the usual massage, wrapping, etc... but there may come a day when I would be willing to go under the knife. It is just not today! Diagnosis: 4/21/2005, IDC, 3cm, Stage IIb, Grade 3, 0/12 nodes, ER-/PR-, HER2- |
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