I had Lymph node transplant surgery last weekend

Options
124

Comments

  • Katiejane
    Katiejane Member Posts: 789
    edited October 2015

    I had LNT on August 25th in Charleston, SC. I chose to have this surgery after 5 cases of cellulitis with 2 episodes of sepsis--not so much for swelling. I had measurements done today at my LE Therapist visit and things are lookin' good. My affected arm now measures consistently with my non affected arm! My swelling feels much less and I am beginning to get some ROM back in my shoulder!!! I hope these results continue!!

    Katiejane

    · Share on FacebookShare on Twitter
  • Sannoliver1
    Sannoliver1 Member Posts: 25
    edited October 2015

    Katiejean I'm sending you good thoughts for continued progress! I know you've had a tough go and I really hope you find some relief. Please keep us posted.

    · Share on FacebookShare on Twitter
  • Nordy
    Nordy Member Posts: 2,106
    edited October 2015

    Hooray KatieJane!

    · Share on FacebookShare on Twitter
  • Katiejane
    Katiejane Member Posts: 789
    edited October 2015

    An update----My therapist did some measurements yesterday of both arms. Both have decreased is size and now my "big" arm is the same size as the least affected arm!! We are looking to decrease seeing my therapist to 2 times a week and the best news, get away from bandaging and into compression sleeves!!!! YAY!!!! Katiejane

    · Share on FacebookShare on Twitter
  • carol57
    carol57 Member Posts: 3,567
    edited October 2015

    katiejane, that is a great report! Is the donor-site discomfort behind you? I imagine so, as it's been nearly 8 weeks. Are you required to take any continuing donor-site precautions, such as limiting activity for a while?

    Nordy, I'm wondering the same thing--your comments about donor-site discomfort and the protocol your surgeon has for protecting that area as it heals.

    Continued best wishes to both of you for smooth sailing and superior lymph flow.

    Carol
    · Share on FacebookShare on Twitter
  • Katiejane
    Katiejane Member Posts: 789
    edited October 2015

    Carol, I have no donor site discomfort at all. My nodes were taken from the clavicle area of the neck and the only time it feels irritated is when I wear a seat belt in the car!!! No donor site precautions! I know my final outcome is a ways off but my main reason for this LNT was infection--- 5 cases of cellulitis and 2 of those I became septic!


    Nordy, please keep us posted on your progress! Katiejane

    · Share on FacebookShare on Twitter
  • carol57
    carol57 Member Posts: 3,567
    edited October 2015

    Katiejane, that's great news. I hope you'll continue to report on your progress. It will really be great if you get relief from the cellulitis bouts.
    · Share on FacebookShare on Twitter
  • Katiejane
    Katiejane Member Posts: 789
    edited October 2015

    Carol, I will continue to let you all know how things are going----negative or positive!!! We all are learning from our experiences! Feeling pretty damn good!!! Katiejane


    · Share on FacebookShare on Twitter
  • marijen
    marijen Member Posts: 3,731
    edited September 2016

    katiejane, so is this another condition where you have to be really sick to get help? So glad you're getting back to normal. Lymphedema is the scariest part for me.

    · Share on FacebookShare on Twitter
  • Katiejane
    Katiejane Member Posts: 789
    edited October 2015

    marijen, No, I didn't need to be "sick" to get the LNT surgery. I could have gone to several different surgeons to have this surgery. The surgeon I chose is one who is extremely well versed in this surgery and I would trust her with my life. !!.

    · Share on FacebookShare on Twitter
  • marijen
    marijen Member Posts: 3,731
    edited September 2016

    Oh that's good to know because if I get it and its bad I want the transplant. insurance covers? I would go to WY for it.

    · Share on FacebookShare on Twitter
  • Katiejane
    Katiejane Member Posts: 789
    edited October 2015

    Marijen, My surgery was done in South Carolina. I traveled from Wyoming and stayed in Charleston for 6 weeks.

    Every insurance plan is different so I strongly suggest you check with yours before you decide to pursue this. And please remember, this is not a cure-there is no cure-only management.

    Best of luck to you! Katiejane

    · Share on FacebookShare on Twitter
  • marijen
    marijen Member Posts: 3,731
    edited September 2016

    BeforeI lose you to the tides of time, would you give me your doctor's name?

    · Share on FacebookShare on Twitter
  • Katiejane
    Katiejane Member Posts: 789
    edited October 2015

    Marijen, Dr. Marga Massey-excellent Doctor/Surgeon!!!

    · Share on FacebookShare on Twitter
  • marijen
    marijen Member Posts: 3,731
    edited September 2016

    Thank you KatieJane, if I ever need her flying across country will be worth it.

    · Share on FacebookShare on Twitter
  • Nordy
    Nordy Member Posts: 2,106
    edited October 2015

    I have no news to report... I am in a holding pattern waiting to see how my arm heals up from the transfer. It is currently super bruised and fairly uncomfortable - but I am still only 3.5 weeks out. I have to remember that this is an arm with lymphedema with a horrible recovery system, so it is going to take longer to heal. I have some pretty down days wondering if I did the right thing -- and there is some worry about the flap itself... but I know it is too early to tell. Fingers crossed that I turn the corner and start to show some progress.

    KatieJane --- LOVE hearing how well you are doing! Woopwoop!

    · Share on FacebookShare on Twitter
  • marijen
    marijen Member Posts: 3,731
    edited September 2016

    what is this flap I keep hearing about? It sounds gross

    · Share on FacebookShare on Twitter
  • AussieElaine
    AussieElaine Member Posts: 64
    edited October 2015

    Nordy, you should be proud of yourself for having the courage to take this step forward and going ahead with the surgery. Patience is the name of the game with our surgeries. I for one feel so much better emotionally knowing that I have done everything possible to help myself. Also if it weren't for people like us having this treatment then no-one would learn anything. I am four months out from my LVA and couldn't be happier with the progress so far. Here's hoping that you and the others continue to do well. (((HUGS)))

    · Share on FacebookShare on Twitter
  • ChiSandy
    ChiSandy Member Posts: 12,133
    edited October 2015

    They’ve started doing LNT surgery up north of here at Cancer Treatment Centers of America in Zion, IL (halfway bet. Chi. and Milwaukee), sometimes concomitantly with reconstruction. The commercials seem to be running several times a day.

    · Share on FacebookShare on Twitter
  • sas-schatzi
    sas-schatzi Member Posts: 19,603
    edited October 2015

    Many here have donated . Thank you !........Wandering around and cheerleading again :)


    Donate today, make a difference directly in all our lives. By supporting BCO, we support each other. Thanks and Hugs :)

    image

    https://community.breastcancer.org/forum/110/topic/834331?page=1

    Link to the mainboard donation page

    https://secure3.convio.net/bco/site/Donation2?df_i...

    · Share on FacebookShare on Twitter
  • Katiejane
    Katiejane Member Posts: 789
    edited October 2015

    Hi Everyone!!! A positive update from today! LNT was done on Aug. 25th of this

    year-about 2 months ago. I have been given the go ahead from my surgeon to move from daily wrapping into compression sleeves and to decrease my visits to the LE Therapist from 3 days a week to 2 days a week!!!! This is HUGE for me!!! I will head to Salt Lake to be measured for sleeves next week! I have been wrapping 23/7 for 2 months now and I have had enough!!! Katiejane

    · Share on FacebookShare on Twitter
  • Nordy
    Nordy Member Posts: 2,106
    edited November 2015

    Hi Everyone. Just a quick report - I am a little over 5 weeks out from my lymph node transfer and I am still undecided whether it was worth it. Overall, the arm is down, but it is also wrapped the majority of the time. It is still bruised and swollen at the transfer site. My hand looks better overall, but again, this could be because it is wrapped constantly. I keep waiting to turn that corner where I can say without a doubt that this is the best thing that I have done, but I just cannot. I will continue to keep you posted. I have about another 7 weeks of wrapping, or until I plateau, which has not happened yet, before I can be measured for new sleeves. This has been by no means a walk in the park and is certainly not an overnight miracle. I remain hopeful, and am working hard to be patient. One of the hardest things for me has been not being able to do the things I love and feeling like a slug! Even taking a walk at this point is hard because the dependent position of my arm gets uncomfortable. It helps to remember that this is only temporary and hopefully by the new year I will have clearance to resume all my activities. Anyway, I just wanted to check in. I know that my arm was a disaster before the surgery so it will likely just take some time. Some days are easier than others. Positive energy to all of you dealing with lymphedema. It sucks.

    · Share on FacebookShare on Twitter
  • Christine2000
    Christine2000 Member Posts: 176
    edited November 2015

    Hey Nordy-- I am a few months ahead of you (LVNT in june) and it has gotten slowly slowly slowly better. Biggest change for me is my hand (just as vein-y and old looking as my other LOL!) my wrist and my upper arm. Forearm still puffy. I don't wrap, I wear a sleeve about 10 hours a day and a ready wrap at night that I usually pull off in my sleep. Starting to think it doesn't make any real difference anyway. So I feel like I am starting to trust my arm a little more. The doctor did say it would take a year to really know if it worked.

    · Share on FacebookShare on Twitter
  • Christine2000
    Christine2000 Member Posts: 176
    edited November 2015

    also-- after 5 weeks I was miserable-- surgery much harder on me then I thought it would be and I was DEEPLY regretting the whole damn thing.

    · Share on FacebookShare on Twitter
  • Katiejane
    Katiejane Member Posts: 789
    edited November 2015

    Hi Ladies! Well, I'm a little over 9 weeks form my LNT. This surgery has taken a lot out of me and my energy is not back to normal yet! It makes me fearful of something else going on in my post cancer body! I was just measured for sleeves and have not received my night compression Circaid garment yet so I still need to wrap at night. I hate wrapping!! I have sleeves I can wear in the daytime.

    I'm hoping my energy returns soon ! I don't have regrets at this time but I am tired of everything revolving around this recovery! Kind of wears me out!!

    I had my surgery because of my incidence of cellulitis/sepsis, not so much to decrease the size of my arm. I am still in the same size of compression sleeves I had pre-op but my measurements are decreased from pre-op. Hoping for the best but I knew it was a gamble from the get-go. Let's hope we all benefit from this! Katiejane

    · Share on FacebookShare on Twitter
  • Nordy
    Nordy Member Posts: 2,106
    edited November 2015

    Christine -- thank you for sharing your feelings at 5 weeks!!! It is soooo good to know that after more time things are feeling better and at that point things were still not so great for you too. It is always good to know you are not alone!

    KatieJane -- So glad you are feeling well!

    · Share on FacebookShare on Twitter
  • hugz4u
    hugz4u Member Posts: 2,781
    edited November 2015
    Big thanks to all of you groundbreakers.Your experiences are dear to us. Keep posting.
    · Share on FacebookShare on Twitter
  • ahdjdbcjdjdbkf
    ahdjdbcjdjdbkf Member Posts: 645
    edited November 2015

    Nordy, Wow, I must have been really tired when I posted! Geez. Yes, I had VLNT surgery March 25, 2015. It is the only surgery I have had for lymphedema. I went acronym blind on that one!

    · Share on FacebookShare on Twitter
  • Farmlovergrl
    Farmlovergrl Member Posts: 46
    edited November 2015

    Hi Katiejane, I was wondering if you have ever been on hormone reducing medication and did it seem to affect the level of swelling and pain from the lymphedema? I had 17 nodes removed May 5 2015. I have swelling in my left arm, especially my forearm. 16 of my nodes were clear with micromatastisis in the sentinel node. I also have a tissue expander with some swelling around it. I am taking Tamoxifen at 10 mg, I have some other health issues so that is why I am on the half dose. I have a small, very sore lump under my arm by the expander. I am worrying about it. I really hope you do great and fully recover from the lymphedema. Best wishes to you and everyone!

    · Share on FacebookShare on Twitter
  • Katiejane
    Katiejane Member Posts: 789
    edited November 2015

    Hi farmlovergrl, Yes, I did take Arimidex, a oral chemo/antihormone medication for 5 years post mastectomy/Chemo/rads. I'm not sure if it affected my swelling/pain as I was pre menopause when I was diagnosed. I have always attributed my swelling/pain to mastectomy/chemo, and radiation. I lost 24 nodes on my diseased side(3 were positive) and 4 nodes on the non diseased side. Everything in your body changes once your hormones are depleted-after chemo and rads there is no normal!. I have had to find a new "normal" and honestly, 8.5 years out, I'm still searching for my normal! I can say that my joints and body aches are now a daily pain in the a*# since I have no hormones but that is the way it is now. I hope this has helped!!! Katiejane

    · Share on FacebookShare on Twitter

Categories