Jun 12, 2015 12:50PM AmyQ wrote:
Thank you for sharing your experience. I will be interested in following your progress.
Posted on: Jun 12, 2015 12:32PM
hi all-- I have been lurking and reading others' experiences and wanted to share mine. I developed lymphedema in 2010--about 3 months after a double MX, no re construction. 23 lymph nodes were removed from my right arm. It has been getting worse and worse and nothing seemed to help--if I wrapped it didn't matter, at least not substantially, and I was getting more and more miserable. The clinics and specialists all told me that there was nothing I could do except MLD, wraps and compression. When I started hearing about LVA and VLNT all of those people/places shouted me down and told me that transplants don't work and will in fact make my condition worse. I have a lot of family in Paris and discovered that they have been doing both procedures there for some time. The doctors I spoke to there were surprised that it was considered so experimental here. I found a doctor in NYC who has done some but not a lot. I had the nuclear mapping test done on my right arm to see if I was a candidate for LVA --the tech told me there was no lymph activity in my arm whatsoever, which, according to him, meant wraps and compression really wouldn't EVER work for me. So my doctor decided lymph transplant was the way to go. She removed nodes from my groin and transplanted them into my arm. The operation took about 4 hours and i stayed in the hospital 2 nights. i left with 2 drains and my arm in a carter block. One drain came out today, the other will come out next week. As of today i can use my right arm (very carefully!)--it is very gently wrapped. I will start physical therapy in 3 weeks. The Dr. also did liposuction on my arm which means I saw a reduction right away--pretty great psychologically! So who knows if this will work-- I went into it knowing that at the very least I probably wasn't going to make my condition worse! I will keep this group posted.
Posts 1 - 30 (136 total)
Jun 12, 2015 12:50PM AmyQ wrote:
Thank you for sharing your experience. I will be interested in following your progress.
Jun 12, 2015 06:14PM Katiejane wrote:
Thanks so much for sharing your experience!! Please keep us all posted on your progress! I had a lymphoscintigraphy done last week, have had 5 experiences with cellulitis and I did find out I am a candidate for the LNT. I just need to make a decision. katiejane
Jun 12, 2015 07:24PM sas-schatzi wrote:
Christine, Your post is going to turn this community upside down. I advocated for this back in 1996 when my twin developed LE post mx with 34 nodes removed, severe arm, and truncal edema. My rationale was if we can do person to person transplants then why can't we do autologous(self) transplant of lymph nodes. Every one glazed over when I'd get on my soapbox. Twin now needs a liver transplant and I'm denied as a transplant donor b/c of age. Well I have developed BC and thyroid cancer and being followed for another couple pre-cancers b/c of cancer treatments. Eventually, they will be able to clean stem cells for a transfer between twins and other matches and regrow organs. Eventually
Jun 12, 2015 07:29PM Rosevalley wrote:
I will be very interested in seeing how this works! Please tell us how things progress.
Jun 13, 2015 04:59AM Christine2000 wrote:
I have to say I have been stunned by some of the negativity I have experienced from the folks who work in lymphedema treatment. it is hard for me not to believe sometimes that there isn't an agenda to keep us all buying sleeves!
Jun 13, 2015 05:34AM Christine2000 wrote:
I had it done here in NYC at NYU hospital. My surgeon had worked with Dr Becker (France) and was very confident about the surgery but had not done tons of these transplants.
Jun 13, 2015 09:54AM Loveroflife wrote:
Christine, thank you for taking the time to share with us your experience. Hoping you will get successful result so that not only you will have a better quality of life, but also your case will help doctors who doubt the success of lymh nodes transplant to reconsider their position
Jun 13, 2015 10:10AM WinningSoFar wrote:
Wow! Great news so far. And kudos to you for steering events your way. That takes commitment and bravery.
Jun 17, 2015 08:55PM runnergirl26 wrote:
Please keep us all posted. Gloves, sleeves, wraps, night time garmets are all a big pain and inconveinence. Please keep us posted. My doctor has encouraged me to seek out a doctor who recently moved to the adjoining state but I am afraid if they took lymph nodes from another place in my body I would get lymphedema there. I am scared about the risks and there is not a whole lot of published research out there it seems. Wishing you well. I was just hoping after reconstruction and having those hard skin expanders out that it might improve. Tomorrow will be a week post op skin expander removal and implant placement.
Jun 18, 2015 02:12AM Nordy wrote:
Christine. Thank you so much for posting. I, for one, am very grateful for you sharing your experience here. I have been researching doctors and this procedure for years and continue to move toward surgery, but have had many, many roadblocks along the way. I always figure, when the time and doctor are right, it will happen. I am very happy for you and will keep my fingers crossed that things continue to heal well. Positive vibes and prayers your way.
Jun 18, 2015 03:06PM sas-schatzi wrote:
Christine, Congratulations on your surgery. How very odd that you have received negative comments. Could you share what was said?
Jun 20, 2015 08:07AM Christine2000 wrote:
Hi all-- it has been 2 weeks since my surgery. My arm is noticeably smaller from the liposuction but also bruised and swollen (from lipo and surgery). My left groin (where the surgeon harvested the lymph nodes) is still quite sore. I am supposed to try to stay off my feet for a few more days. Can't wait to exercise again! Runnergirl26, you are correct, removing lymph nodes does always present a risk of lymphedema. My doctor ran a nuclear lymph mapping test on my left leg and groin to see which nodes she could remove with the least amount of impact on my system. She also did another dye test during surgery to be absolutely sure. So-- hopefully my odds are pretty good (knock wood). Monday I go to a PT who will wrap my arm. I'll keep you all posted.
Jun 20, 2015 08:09AM Christine2000 wrote:
oh and the negative comments-- really just a knee jerk reaction from lymphedema "experts" that the surgery is a bad idea, will only make things worse, is unproven etc.
Jun 20, 2015 12:51PM sas-schatzi wrote:
Christine, All knew ideas have skeptics, not that you aren't aware of that. It just frosts my pituty. This is an idea that has been floating around for years and years. Think of all the transplants being done. This is an autologous(self) transplant-----can't get a better match than that. I have an identical twin on a liver transplant list. I can't be a donor for a partial liver transplant due to cancer hx and age. No consideration. She may die with an exact match available with no one considering a way to do something other than what their rules say. Yet the folks that started transplants faced the same obstacles.
You have hope where little was provided and sought out something revolutionary KUDOS, sassy
Jun 30, 2015 09:35AM Christine2000 wrote:
Just an update: its been 3 weeks since my VLNT surgery. My arm is noticeably smaller (I know that is due to the liposuction also) I am lightly bandaging every day and next week I will start "real" physical therapy. The scar on my groin has healed nicely and I have resumed normal activity (I walk about 3 to 5 miles daily) -- so far I am very hopeful that this will work. Will keep you all posted!
Jun 30, 2015 10:15AM Rosevalley wrote:
That's terrific! I hope everything goes well and it's a screaming success. It would help out so many woman who have this issue. Thanks for the update. Please keep posted. Be well!
Jun 30, 2015 10:33AM AmyQ wrote:
Fingers crossed you are healing properly and the surgery was successful. Thank you for the update...keep them coming, please.
Jun 30, 2015 03:30PM sas-schatzi wrote:
Christine, Excellent sounds great. Very happy for you that all is going so well :)
Jul 9, 2015 05:21AM kriserts wrote:
Hi Christine, I have a question about the liposuction. I thought that if you lipoed an arm with lymphedema, you needed to wear a compression sleeve on it for the rest of your life. ... ? That's what I've read, like, everywhere. Did your doctor say anything about that to you? Very curious.
Is it somehow different if you get lipo in conjunction with a LNT?
I've been doing fat grafting as reconstruction, which involves lipo, and believe me, I'd be the first to jump at it if it didn't involve always wearing a sleeve.
Jul 9, 2015 12:46PM Christine2000 wrote:
Hi Krisert-- no, according to my doctor within a few months I will not be wearing compression. She has performed this operation on other patients (dozens, not hundreds, of times--) and results thus far, 2 to 3 years out have been very good.
Jul 14, 2015 11:33AM Christine2000 wrote:
Update: I am still wrapping and will for another 3 weeks. I have begun "real" physical therapy and am doing so 2 x a week. Arm reduced by almost a centimeter all around since last posting--
Jul 14, 2015 12:39PM sas-schatzi wrote:
Thanks Christine looking forward to your updates :) YAY 1 centimeter less!
Jul 18, 2015 01:12PM - edited Jul 18, 2015 01:13PM by texas94
I can't wait to hear how things progress for you! I'm 4 months post ALND and my lymphedema is slowly getting worse. I recently got the "Flexitouch" machine, but I'm not sure yet if it's really making any difference. It's cumbersome and confining, not to mention crazy expensive (my insurance paid for it). I've been really down the past few days as my arm suddenly grew bigger than it has ever been (I'd been hovering around 2cm bigger at the top, and it suddenly was 5cm bigger!). I've been wondering about this surgery, but OH I'M SO TIRED OF SURGERIES! :)
Jul 18, 2015 01:20PM mira845 wrote:
I'mm following this thread because I'm now more worried about lymphodema than the damn cancer.
No signs of anything yet but I'm only 10 days from surgery. I feel like I was raped when I heard the BS took 31 nodes. For the life of me I can't figure out why. She is a top BC surgeon here.
Thank you for making me aware that transplants are possibly an option.
Jul 18, 2015 01:41PM texas94 wrote:
mira- You probably know this already, but the number of nodes isn't as significant as the level of ALND surgery. Some people just have more nodes than others. I had the most extensive ALND (level 3- all nodes up to clavicle), and I only had 18 total (but 11 were positive... we were shocked). Also, the percentage of positive nodes is more meaningful than the number. SO, having more nodes in those areas is actually a good thing, because it lowers the percentage of positive nodes. Don't get me wrong- I'm not trying to downplay your results. EVERYTHING WE GO THROUGH SUCKS, but hopefully knowing having a low percentage of positive nodes is a good thing will make you feel a little better.
Oh, and I also am pissed off all the time I had to lose all my nodes. I told my husband last night if not for the hair loss, I think I'd be willing to have chemo every 3 weeks again if it meant no lymphedema, and I had an awful time with chemo!!!
Jul 18, 2015 02:03PM mira845 wrote:
thankyou for the reply, texas94.
Actually, I'm not aware of what you said. The BS took 3 sentinal all positive, one big axial that turned out to be neg and then the rest were from a chunk under my arm so I'll have to question her more about the level?
When I freaked about the number, she didn't seem concerned which freaked me out more. Then a nurse came in and explained about lyphodema and all the precautions, bug bites, gardening, cuts, burns, my head was spinning....
Hope I'm not thread jacking here....if so I could continue with PM's or start my own thread.