lymphedema

prv
prv Member Posts: 107
edited March 2014 in Breast Cancer #1
I know this likely has been posted before but I need help with lymphedema. Current am using the sleeve and scheduled to be wrapped next week. Anyone else have this? Any advice? Seems like I get every side effect possible! bless you all and stay strong!
prv

Comments

  • New Flower
    New Flower Member Posts: 4,294
    #2
    you are not alone
    in your struggle. I was wrapped yesterday and feel much better today, I have been wearing sleeve, doing self massage, exercises, got 100% range of motion and still have lymphedema. You do not get very side effect, it just doctors never give correct numbers. According to my physical and lymphedema therapist 30 % patients who underwent lymph nodes removal and radiation have lymphedema. This number is higher for those who had positive nodes. I know from my on struggle it is tough. Please be gentle with yourself and stay positive.
    Hugs,
    New Flower
  • Mama G
    Mama G Member Posts: 762
    #3
    New Flower said:

    you are not alone
    in your struggle. I was wrapped yesterday and feel much better today, I have been wearing sleeve, doing self massage, exercises, got 100% range of motion and still have lymphedema. You do not get very side effect, it just doctors never give correct numbers. According to my physical and lymphedema therapist 30 % patients who underwent lymph nodes removal and radiation have lymphedema. This number is higher for those who had positive nodes. I know from my on struggle it is tough. Please be gentle with yourself and stay positive.
    Hugs,
    New Flower

    I'm figuring I'll be in your shoes (sleeves) soon...
    I had 9 nodes removed, 8 were positive and will complete chemo in 2 weeks and start rads 3 weeks after that, so I'm guessing the RADIATE your lymph system right? What are the self massage and exercises you do? Glad to hear you're having good results.
  • KathiM
    KathiM Member Posts: 8,028 Member
    #4
    Sorry for your struggles....
    I had 7 nodes removed, first 2 were infiltrated...

    I am fortunate to say that, after 4 years, I still have yet to do battle with lymphodema...

    I have great respect for you in this additional struggle, I'm sorry that you have to go thru this, as well.

    I treat my 'special arm' with great care, and do the exercises, etc when flying...including walking around the cabin. This prevents blood clots, as well.

    Recently, I fell and had my other arm casted. A pressure sleeve was applied, as well, and within 24 hours caused swelling in my fingers. We had to cut the sleeve off. It taught me the lesson of being more careful...if it would have been my other arm, it would have necessarily caused the problem that you are having...

    BIG Hugs to you, Kathi
  • New Flower
    New Flower Member Posts: 4,294
    #5
    Mama G said:

    I'm figuring I'll be in your shoes (sleeves) soon...
    I had 9 nodes removed, 8 were positive and will complete chemo in 2 weeks and start rads 3 weeks after that, so I'm guessing the RADIATE your lymph system right? What are the self massage and exercises you do? Glad to hear you're having good results.

    MamaG ask your breast surgeon
    for references. Physical therapist and lymphedema therapist, who does manual lymph drainage could be very helpful in teaching self massage and will give special exercises. his link could very useful http://www.lymphnet.org/.
    You do need a prescription in order to be reimbursed for the sleeve and glove (if you need one) by insurance. I was given prescription twice initially by my Surgical oncologist and second time by my Radiologist.
    Compression sleeve can be bought in medical supplies store or from certified distributors. There are several companies which make them: Juzo (www.juzousa.com), Jobs, Madi. The most important is having a correct size, You can be measured in the store, or but better by lymphedema therapist.
    I had 20 nodes removed, 10 was positive.

    New Flower
  • Ritzy
    Ritzy Member Posts: 4,381 Member
    #6
    KathiM said:

    Sorry for your struggles....
    I had 7 nodes removed, first 2 were infiltrated...

    I am fortunate to say that, after 4 years, I still have yet to do battle with lymphodema...

    I have great respect for you in this additional struggle, I'm sorry that you have to go thru this, as well.

    I treat my 'special arm' with great care, and do the exercises, etc when flying...including walking around the cabin. This prevents blood clots, as well.

    Recently, I fell and had my other arm casted. A pressure sleeve was applied, as well, and within 24 hours caused swelling in my fingers. We had to cut the sleeve off. It taught me the lesson of being more careful...if it would have been my other arm, it would have necessarily caused the problem that you are having...

    BIG Hugs to you, Kathi

    I feel lucky as I don't have
    I feel lucky as I don't have this, but, I know so many that do. I am sorry that you have to experience it. I wish you all the best of luck!

    Sue :)
  • susie09
    susie09 Member Posts: 2,930
    #7
    Ritzy said:

    I feel lucky as I don't have
    I feel lucky as I don't have this, but, I know so many that do. I am sorry that you have to experience it. I wish you all the best of luck!

    Sue :)

    I don't have it, but, looks
    I don't have it, but, looks like you have some good advice here. If you type it in the search box above, you will find a lot more information too. Good luck!

    ♠♣ Susie ♠♣
  • Sharon40
    Sharon40 Member Posts: 93
    #8
    same boat as you!
    I did chemo first and surgery next (actually had 3rd one yesterday). In between surgeries, my arm started to swell. Mild Lymphedema!! I had started some excercises to get my motion back, then went to see a PT. He massaged and wrapped my arm - I thought I would die from the tightness of the thing! After 6 hours, I couldn't stand it anymore and took if off! I think I have less motion now than before I went to see the PT. I am supposed to go back to him in a few weeks (must heal from total mastectomy first). I enjoyed the massage, but the wrap was awful!! I hope it is better next time! I wish I had some advice, but I seem to stuck in the same boat with you!! Hope all is well for you soon.
  • susie09
    susie09 Member Posts: 2,930
    #9
    New Flower said:

    MamaG ask your breast surgeon
    for references. Physical therapist and lymphedema therapist, who does manual lymph drainage could be very helpful in teaching self massage and will give special exercises. his link could very useful http://www.lymphnet.org/.
    You do need a prescription in order to be reimbursed for the sleeve and glove (if you need one) by insurance. I was given prescription twice initially by my Surgical oncologist and second time by my Radiologist.
    Compression sleeve can be bought in medical supplies store or from certified distributors. There are several companies which make them: Juzo (www.juzousa.com), Jobs, Madi. The most important is having a correct size, You can be measured in the store, or but better by lymphedema therapist.
    I had 20 nodes removed, 10 was positive.

    New Flower

    I didn't know that you
    I didn't know that you needed a prescription for the sleeve and glove. Thanks for that info New Flower. I don't need one, but, I can tell others now.

    ♠♣ Susie ♠♣
  • RE
    RE Member Posts: 4,591 Member
    #10
    I have it.
    Hi PRV, I have been dealing with lymphedema for 8 years now. I have a few pages of info on my bio page here. If you are interested go to my bio page and click on page 19 of my expressions (yes I post a lot LOL!) These are pages of info. my doctor gave me and have a lot of good information on them. You can also go to http://lymphedema.org/ (cut and paste link). Hope this helps!

    Hugs,

    RE

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