I am taking part in a Lymphedema research study

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m-star
m-star Member Posts: 441
edited March 2014 in Breast Cancer #1
Before my BMx, i was put in touch with the lymphedema clinc at my hospital. The lady asked me if i would be willing to take part in some voluntary research they were doind and i agreed.

Before the surgery,i had to have my arms measured using a machine which takes images and 'draws' up a computerised image of your arm,along with all the vital measurements.

I also had to have an electrode put on 1 foot and both hands. An electric current (which you don't feel) is passed through your body and times are recorded as to how lond it takes the current to pass around your body.

Then i have my middle finger circumference, and all 4 fingers circumference measured.

Each time i go back,i have all three of the above tests done.
As some of you may know,i have been videoing my expansions,and so when i went last week,thought it may be useful to also video the lymphedema testing. I had to upload them to youtube in order to get links for them.
If anyone is interested in seeing the UK's research,please feel free to take a look.

(**apologies for the shaky camera work! It was my daughter doing the video's!)

http://www.youtube.com/watch?v=uFfvdgr-ex4

http://www.youtube.com/watch?v=ZxCZsKzbGbc

http://www.youtube.com/watch?v=ltiYhHWEbhs

I think you'll have to copy and paste into your browser as im not sure how to create a direct link.

Kay

Comments

  • aztec45
    aztec45 Member Posts: 757
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    Hello
    Hello. Glad you are doing this. My right arm is a bit swollen but not anything major. Just have to do exercises and watch it. Keep us posted.

    P
  • TawnyS
    TawnyS Member Posts: 144 Member
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    Very interesting! You are a
    Very interesting! You are a wealth of information and you are so awesome to share your experiences with us. I have trouble ALL THE TIME with the stupid lymphedema! I had all nodes removed from my right and 16 from my left. My right arm is a mess! I haven't watched the video yet but I will. I am very interested in the outcome. Please keep me posted.
  • m-star
    m-star Member Posts: 441
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    TawnyS said:

    Very interesting! You are a
    Very interesting! You are a wealth of information and you are so awesome to share your experiences with us. I have trouble ALL THE TIME with the stupid lymphedema! I had all nodes removed from my right and 16 from my left. My right arm is a mess! I haven't watched the video yet but I will. I am very interested in the outcome. Please keep me posted.

    well i don't seem to be
    well i don't seem to be suffering from any swelling according to my readings,but its handy to know about. I never really knew what Lymphedema was before these tests. I heard froma couple of ladies on another BC site that the UK seems to be ahead of the game with lymphedema research,after watching my vids! wow.....i always thought we were way behind the states with stuff like that.
  • Ritzy
    Ritzy Member Posts: 4,381 Member
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    m-star said:

    well i don't seem to be
    well i don't seem to be suffering from any swelling according to my readings,but its handy to know about. I never really knew what Lymphedema was before these tests. I heard froma couple of ladies on another BC site that the UK seems to be ahead of the game with lymphedema research,after watching my vids! wow.....i always thought we were way behind the states with stuff like that.

    Your sharing your
    Your sharing your experiences is amazing m-star and very appreciative. So, thank you!


    Sue :)
  • New Flower
    New Flower Member Posts: 4,294
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    m-star said:

    well i don't seem to be
    well i don't seem to be suffering from any swelling according to my readings,but its handy to know about. I never really knew what Lymphedema was before these tests. I heard froma couple of ladies on another BC site that the UK seems to be ahead of the game with lymphedema research,after watching my vids! wow.....i always thought we were way behind the states with stuff like that.

    Hi Kay
    it is a very interesting research. Having lymphedema myself, I am wondering what was the selection criteria for participation? Do you know how long will the study go? How many of your lymph nodes were removed during mastectomy? As for science Australia is the leader in lymphedema treatment and states are behind Europe. The best lymphedema therapist have been trained in Australia or Europe (Germany).
    Thanks and Good luck.
    New Flower
  • jnl
    jnl Member Posts: 3,869 Member
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    m-star said:

    well i don't seem to be
    well i don't seem to be suffering from any swelling according to my readings,but its handy to know about. I never really knew what Lymphedema was before these tests. I heard froma couple of ladies on another BC site that the UK seems to be ahead of the game with lymphedema research,after watching my vids! wow.....i always thought we were way behind the states with stuff like that.

    This does sound interesting.
    This does sound interesting. Thanks for participating in it!


    Hugs, Leeza
  • KayNYC
    KayNYC Member Posts: 495 Member
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    very interested
    I am trying to get an evaluation for the swelling in my left arm. I had six nodes removed,with my lumpectomy, all nodes came out negative for Cancer.I hear that there is also research being done at NYU. I have contacted them for the physical therapy/occupational therapy evaluation for lymphedema. They have a three week waiting list before scheduling. That seems good compared to the other hospitals that I have contacted over the past week who have waiting lists that go to the end of the summer. The lymphedema specialists are either a rare commodity here in NYC or I have picked the wrong time to be seeking this service.Thanks for sharing your videos and information. It sure sounds like the UK and Australia are ahead of us in this area of scientific investigation.
    Hugs, K
  • m-star
    m-star Member Posts: 441
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    KayNYC said:

    very interested
    I am trying to get an evaluation for the swelling in my left arm. I had six nodes removed,with my lumpectomy, all nodes came out negative for Cancer.I hear that there is also research being done at NYU. I have contacted them for the physical therapy/occupational therapy evaluation for lymphedema. They have a three week waiting list before scheduling. That seems good compared to the other hospitals that I have contacted over the past week who have waiting lists that go to the end of the summer. The lymphedema specialists are either a rare commodity here in NYC or I have picked the wrong time to be seeking this service.Thanks for sharing your videos and information. It sure sounds like the UK and Australia are ahead of us in this area of scientific investigation.
    Hugs, K

    newflower~
    hi. i didn't have

    newflower~

    hi. i didn't have any node3s removed but i think it was just from surgery itself|?? not sure. maybe they're doing a controlled test with people who had nodes removed and people who didn't.
    To be honest,i've never thought to ask! LOL

    I was only too happy to help with any research. I am also taking part in long term research about my hodgkins lymphoma and have been in that research programme for about 5-6 yrs now.Any follow ups or problems which could stem back from the HL and my treatments,all the data gets sent to the research team. I forget i'm even taking part in it as it doesn't involve itself in my life at all.

    As long as its not the kind of research where they want you to try out drugs,im willing! ha ha
  • DebbyM
    DebbyM Member Posts: 3,289 Member
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    m-star said:

    newflower~
    hi. i didn't have

    newflower~

    hi. i didn't have any node3s removed but i think it was just from surgery itself|?? not sure. maybe they're doing a controlled test with people who had nodes removed and people who didn't.
    To be honest,i've never thought to ask! LOL

    I was only too happy to help with any research. I am also taking part in long term research about my hodgkins lymphoma and have been in that research programme for about 5-6 yrs now.Any follow ups or problems which could stem back from the HL and my treatments,all the data gets sent to the research team. I forget i'm even taking part in it as it doesn't involve itself in my life at all.

    As long as its not the kind of research where they want you to try out drugs,im willing! ha ha

    I think it is great mstar
    I think it is great mstar that you are participating in this. And, you didn't have any lymph nodes removed because you didn't have breast cancer, right? I thought I read on here where you didn't have bc. Forgive me if I am wrong. Good luck!

    Hugs, Debby
  • Katz77
    Katz77 Member Posts: 598
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    Lymphedema
    Hi, Well I had 20+ nodes removed and 18 back positive for ca. I have mild ( compared to some) edema. Usually after a long work day, missed my exercises and elevation or sitting at the computer to long, esp w/o my "sock". My understanding of lymphedema is that it can occur at any time. Some as long as a yr later. That's what I read on a lymphedema site.
    Ahhh the joys of breast cancer. lol
  • New Flower
    New Flower Member Posts: 4,294
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    Katz77 said:

    Lymphedema
    Hi, Well I had 20+ nodes removed and 18 back positive for ca. I have mild ( compared to some) edema. Usually after a long work day, missed my exercises and elevation or sitting at the computer to long, esp w/o my "sock". My understanding of lymphedema is that it can occur at any time. Some as long as a yr later. That's what I read on a lymphedema site.
    Ahhh the joys of breast cancer. lol

    Sitting at computer makes my lymphedema worse
    I do need breaks and stretches. I had 20 lymph nodes removed. I guess even when you with NED, you would not forget about cancer.
  • m-star
    m-star Member Posts: 441
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    Sitting at computer makes my lymphedema worse
    I do need breaks and stretches. I had 20 lymph nodes removed. I guess even when you with NED, you would not forget about cancer.

    hi Debby
    yes that correct.i

    hi Debby
    yes that correct.i wasn't dx with BC~my surgery was preventative so no nodes removed.It may be one of those controlled tests where women who have/haven't had nodes removed are tested for comparisons. =)
  • wendybia
    wendybia Member Posts: 73
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    just dx
    i just got home from 3rd therapy for lymphedema....arm wrap makes typing this difficult so forgive misspellings....i only had 1 node removed...12/2009...arm started swelling like a month ago....breast surgeon did electrode test and sent me to lymphedema center...starting to work now...messages my arm to move fluid and wraps it....
    she said everyone is different with the number of nodes we have so i may have very few and that's why with only 1 removed i'm having trouble, also my scar tissue on the breast is very thick..she said that also prevents the fluid from flowing properly...i'll keep ya posted