Lymphademia apt. with specialist

rjjj
rjjj Member Posts: 1,822 Member
edited March 2014 in Breast Cancer #1
Thanks to Re ,i already knew alot about this. But I didn't know that the massage machine i have at home could be making my lymphedemia worse. I guess it is too much applyed pressure and could damage me further. My specialist wants to do treatment on it with a lighter physical massage, then wrapping my arm and hand. After that for a week she says we will get rid of the fluid and I will need to wear a arm garmet with a glove in it each and every day. I asked her how I could work with that on,(I am a CNA) she said it would not be feasable. I shouldn't lift and can't use good hygiene (washing hands) which are both a big part of CNA work. I could choose not to get the treatment or wear the glove/garmet but then she says it will probably get worse with scar tissue formed by radiation. and thickening of the skin. I guess i don't have much of a choice. I cried and cried when i got back to my room. I love being a CNA and taking care of my old people. They all have been waiting for me to come back. plus jobs in Terry are pretty slim-pickins. What would you do my sisters?
love, Jackie
«1

Comments

  • Christmas Girl
    Christmas Girl Member Posts: 3,682 Member
    #2
    Oh, dear Jackie...
    I'm so sorry your appointment made you cry. :-(

    I wear an arm sleeve and a gauntlet, two completely separate pieces. A gauntlet is a hand glove without fingertips. When I garden, for example, I simply wear a gardening glove over the gauntlet to protect it. And, a gauntlet is easy to remove for hand washing. Please remember that my compression garments are used as a prevention measure. For you, since you've already developed the condition, maybe things are different. But, still - it might be worth asking your therapist about this option, vs. a one-piece sleeve with glove attached. I was told not to lift more than 10 lbs. with right arm (BC side); therefore, total 20 lbs. with BOTH arms maximum. Anything slightly heavier I use left side/arm only. I guess I don't understand why you couldn't return to your beloved job - even with some restrictions on what you can and cannot physically do...

    You've come so far, Jackie. Please don't despair. I hope you at least agree to the week's worth of recommended physical therapy - the lighter physical massage technique you described. And the wrapping. Please try it - see the results.

    Best wishes to you, dear Jackie.

    Kind regards, Susan
  • seof
    seof Member Posts: 819 Member
    #3
    Keep trying
    I would keep asking the Dr. for other possible ways to treat the condition without having t change jobs. Also ask your employer if there is a way to modify what you do at work to accomodate your treatments. Maybe go to another Dr. for a second opinion and keep researching options. It seems like there must surely be some way to compromise and treat the arm and keep the job. I don't have any experience with the issue myself. So far lymphedema has not happened to me, though I have been warned about the possibility.

    Best wishes, seof.
  • RE
    RE Member Posts: 4,591 Member
    #4
    Here are some examples
    image

    This is the type of sleeve that has the glove built into it. I have found that it is less supportive in the hand and wrist region therefore I do not use it much. Not really practical either and it costs more.

    image

    This is the sleeve independent of the glove portion. I wear this a lot as you can see by the wear on this one.

    image

    This is the silicone border on the independent sleeve that allows it to remain in place, it is quite comfortable.

    image

    This is the glove that you can wear with the independent sleeve. I wear this one and one with finger which is very similar. This one may be more practical for you while you are working. It can be easily folded backward for hand washing which I do often. The one with the fingers cannot be folded backwards and most be totally removed for hand washing. However you can do all other daily chores with it on.

    I agree that you cannot lift anything heavy so that may very well be a problem, it just depends on what your job requires of you. I hope this has been somewhat helpful to you, it just saddens me that your appt made you cry.

    It is also helpful to wrap your arm in ice when it swells a lot. There are wraps that are on the market that make this quite simple.

    Hugs,

    RE
  • Kat11
    Kat11 Member Posts: 1,931 Member
    #5
    Christmas Girl said:

    Oh, dear Jackie...
    I'm so sorry your appointment made you cry. :-(

    I wear an arm sleeve and a gauntlet, two completely separate pieces. A gauntlet is a hand glove without fingertips. When I garden, for example, I simply wear a gardening glove over the gauntlet to protect it. And, a gauntlet is easy to remove for hand washing. Please remember that my compression garments are used as a prevention measure. For you, since you've already developed the condition, maybe things are different. But, still - it might be worth asking your therapist about this option, vs. a one-piece sleeve with glove attached. I was told not to lift more than 10 lbs. with right arm (BC side); therefore, total 20 lbs. with BOTH arms maximum. Anything slightly heavier I use left side/arm only. I guess I don't understand why you couldn't return to your beloved job - even with some restrictions on what you can and cannot physically do...

    You've come so far, Jackie. Please don't despair. I hope you at least agree to the week's worth of recommended physical therapy - the lighter physical massage technique you described. And the wrapping. Please try it - see the results.

    Best wishes to you, dear Jackie.

    Kind regards, Susan

    Question
    Susan and Jackie - Is the sleeve you have to wear, is this permanent? Will this condition ever go away? Is this from the nodes being removed ? Sorry so many questions, just trying to learn as much as I can. Jackie I hope it all works out for you.
  • RE
    RE Member Posts: 4,591 Member
    #6
    Kat11 said:

    Question
    Susan and Jackie - Is the sleeve you have to wear, is this permanent? Will this condition ever go away? Is this from the nodes being removed ? Sorry so many questions, just trying to learn as much as I can. Jackie I hope it all works out for you.

    answers
    I have dealt with lymphedema for nearly ten years now it is permanent. Mine is from node removal and a lot of radiation (I had 16 weeks of rads). Some days it swells less than other, however you must be very careful with the effected arm because infection is a real danger. I have had several infections one which turned staph on me and nearly required hospitalization. You just have to be mindful of the fact that you have it and treat the arm and hand with care.

    RE
  • Christmas Girl
    Christmas Girl Member Posts: 3,682 Member
    #7
    RE said:

    Here are some examples
    image

    This is the type of sleeve that has the glove built into it. I have found that it is less supportive in the hand and wrist region therefore I do not use it much. Not really practical either and it costs more.

    image

    This is the sleeve independent of the glove portion. I wear this a lot as you can see by the wear on this one.

    image

    This is the silicone border on the independent sleeve that allows it to remain in place, it is quite comfortable.

    image

    This is the glove that you can wear with the independent sleeve. I wear this one and one with finger which is very similar. This one may be more practical for you while you are working. It can be easily folded backward for hand washing which I do often. The one with the fingers cannot be folded backwards and most be totally removed for hand washing. However you can do all other daily chores with it on.

    I agree that you cannot lift anything heavy so that may very well be a problem, it just depends on what your job requires of you. I hope this has been somewhat helpful to you, it just saddens me that your appt made you cry.

    It is also helpful to wrap your arm in ice when it swells a lot. There are wraps that are on the market that make this quite simple.

    Hugs,

    RE

    To have done this for Jackie so quickly!

    TO JACKIE: The glove that RE has posted is the type I refer to as a "gauntlet" - a glove without fingertips. As RE agrees with me, so much easier for hand washing; therefore, maintaining healthy hygiene while you're working. At your job, you could simply wear a disposable latex or rubber glove to protect the gauntlet.

    Kind regards, Susan
  • cats_toy
    cats_toy Member Posts: 1,462 Member
    #8
    Jackie
    It is too bad that the people we come in contact with don' realize that we need to continue with our jobs, and it is too bad that it brought you to tears. I can understand how frustrating that would be.

    It looks as if the pictures RE put up should be fine for you to be able to continue with your work, which by the way sounds very rewarding. Hopefully you can use these and continue working, you will just have to adjust the way some of the things are done.

    Good luck to you and please be happy!

    Cat
  • rjjj
    rjjj Member Posts: 1,822 Member
    #9
    RE said:

    Here are some examples
    image

    This is the type of sleeve that has the glove built into it. I have found that it is less supportive in the hand and wrist region therefore I do not use it much. Not really practical either and it costs more.

    image

    This is the sleeve independent of the glove portion. I wear this a lot as you can see by the wear on this one.

    image

    This is the silicone border on the independent sleeve that allows it to remain in place, it is quite comfortable.

    image

    This is the glove that you can wear with the independent sleeve. I wear this one and one with finger which is very similar. This one may be more practical for you while you are working. It can be easily folded backward for hand washing which I do often. The one with the fingers cannot be folded backwards and most be totally removed for hand washing. However you can do all other daily chores with it on.

    I agree that you cannot lift anything heavy so that may very well be a problem, it just depends on what your job requires of you. I hope this has been somewhat helpful to you, it just saddens me that your appt made you cry.

    It is also helpful to wrap your arm in ice when it swells a lot. There are wraps that are on the market that make this quite simple.

    Hugs,

    RE

    Thanks Re
    She did say that we may try one with a glove seperate from the arm sleeve. I also have swelling of the chest wall, which makes my rib cage portrude. At first I was so scared i thought it was a tumor the size of a grapefruit! We can't do anything about that now..while i am getting radiation, but said they also have garmets for that (like a corsett only not so tight,) and a bra attached..I asked if they also had breast attached? she said they do have them fitted with prosthesis. have you heard of that? geeze i feel like i will be wrapped up like a mummy! haha

    She did warn me of infections and said if my hand or arm feels warm and red to get to the hospital immediately. And to take good care of that arm, said don't even carry a purse on it. Or garden in the hot sun, but walk, garden etc. when it is cooler since heat makes you swell also. Thanks for the ice tip Re, she didn't tell me that. I will keep you posted on further news.
    love Jackie
  • Christmas Girl
    Christmas Girl Member Posts: 3,682 Member
    #10
    rjjj said:

    Thanks Re
    She did say that we may try one with a glove seperate from the arm sleeve. I also have swelling of the chest wall, which makes my rib cage portrude. At first I was so scared i thought it was a tumor the size of a grapefruit! We can't do anything about that now..while i am getting radiation, but said they also have garmets for that (like a corsett only not so tight,) and a bra attached..I asked if they also had breast attached? she said they do have them fitted with prosthesis. have you heard of that? geeze i feel like i will be wrapped up like a mummy! haha

    She did warn me of infections and said if my hand or arm feels warm and red to get to the hospital immediately. And to take good care of that arm, said don't even carry a purse on it. Or garden in the hot sun, but walk, garden etc. when it is cooler since heat makes you swell also. Thanks for the ice tip Re, she didn't tell me that. I will keep you posted on further news.
    love Jackie

    Jackie, since you have internet access this week...
    This site - the American Cancer Society, cancer.org - has lots of info re: lymphedema. Just type it into the search bar on the home page.

    Also, you can do research on various types of compression garments via the discount site RE so kindly provided not too long ago. And, review the info RE has posted twice in recent weeks. Use the board's search bar for RE's threads.

    Kindest regards, Susan
  • lynn1950
    lynn1950 Member Posts: 2,570
    #11
    Just want to say that you are one amazing woman
    Jackie - Not only have you had to face the beast, but I know this lymphedema thing has been a problem for months now. I am so glad to hear from RE and others that it sounds like you can manage it and keep your job. I have lymphedema too and wear my sleeve every day, but I am not careful about carrying heavy things. So this thread is also a warning.

    I just know in my heart that you can be a CNA and work with the people you love. I just believe it! Love, Lynn
  • Jeanne D
    Jeanne D Member Posts: 1,867
    #12
    Jackie, please don't cry :(
    I hate that anyone would make you cry. It just isn't right. Hopefully, you can wear one of the gloves that RE pictured here and you can still do your job. I guess I was one of the lucky ones. I had all of my lymph nodes removed the first time I had bc, but, I never got lymphedema. I do have some numbness and I don't get shots or let anyone put an iv in it or take my blood pressure there, but, other than that, I have no problems. I would trade my situation with you in a minute, if I could. I hope you can find a resolution to help you to feel better and to still keep working. And, I am so sorry that you are having these problems Jackie.
  • RE
    RE Member Posts: 4,591 Member
    #13
    rjjj said:

    Thanks Re
    She did say that we may try one with a glove seperate from the arm sleeve. I also have swelling of the chest wall, which makes my rib cage portrude. At first I was so scared i thought it was a tumor the size of a grapefruit! We can't do anything about that now..while i am getting radiation, but said they also have garmets for that (like a corsett only not so tight,) and a bra attached..I asked if they also had breast attached? she said they do have them fitted with prosthesis. have you heard of that? geeze i feel like i will be wrapped up like a mummy! haha

    She did warn me of infections and said if my hand or arm feels warm and red to get to the hospital immediately. And to take good care of that arm, said don't even carry a purse on it. Or garden in the hot sun, but walk, garden etc. when it is cooler since heat makes you swell also. Thanks for the ice tip Re, she didn't tell me that. I will keep you posted on further news.
    love Jackie

    :-)
    Hi Jackie, I have not heard of the garmet for the chest, however I have no doubt it is out there. In regards to the prosthesis and such prior to my reconstruction I was allowed to purchase 6 bras a year that had a pocket to slip the prosthesis in and every other year I could order a new prosthesis all covered by medi-cal which I have since I am currently on disability. It made wearing the prosthesis much more comfortable and simple.

    By the way there are two very distinct clues your arm may be infected, if it feels heavy and if you suddenly see a rash developing. My best to you Jackie!

    RE
  • rjjj
    rjjj Member Posts: 1,822 Member
    #14
    Thanks again Re
    I will also look out for a rash. I have heard you usually get turned down a few times before you can get disability? We have to struggle so much for eveything it seems. I can't look into the trunk wrap as this is part that they are radiating.
    I had 26 nodes taken (6 pos) but this is the cause of my lymphedemia. hugs, Jackie
  • Marcia527
    Marcia527 Member Posts: 2,729
    #15
    Maybe at work they can give
    Maybe at work they can give you a job that doesn't require lifting or personal care which requires hand washing. I have a problem with a rash on my hands and every time I wash them I am supposed to put lotion on too. Hope you can get something worked out.
  • chenheart
    chenheart Member Posts: 5,159
    #16
    Bless your heart!
    Jackie,
    You are without a doubt one of my favorite ppl on the boards~ I do not suffer from Lymphedema, but of course I want to send you a not too tight cyber-hug, and wipe your eyes for you! I do not believe that this is going to preclude you from keeping the job you don't just need but want, especially in a place where you are (not surprisingly) loved and missed!

    Keep us posted; it seems that the Sisierhood has given you great ideas and suggestions.

    Hugs,
    Claudia
  • gerrico1216
    gerrico1216 Member Posts: 41
    #17
    Need information
    How do you know you have lmyphedema? I have surgery 2/5/2009 I still about 170cc of fluid drained each week. Dr. says its because of tomor and the lymphnodes were side by side and I had 1 node big as tumor. I'm just curious is this normal?



    Hugs,
    darlene
  • jnl
    jnl Member Posts: 3,869 Member
    #18
    gerrico1216 said:

    Need information
    How do you know you have lmyphedema? I have surgery 2/5/2009 I still about 170cc of fluid drained each week. Dr. says its because of tomor and the lymphnodes were side by side and I had 1 node big as tumor. I'm just curious is this normal?



    Hugs,
    darlene

    Is lymphedema common with
    Is lymphedema common with the removal of lymph nodes? I didn't get it. Or, might it happen later on?
  • RE
    RE Member Posts: 4,591 Member
    #19
    jnl said:

    Is lymphedema common with
    Is lymphedema common with the removal of lymph nodes? I didn't get it. Or, might it happen later on?

    Anytime
    Hi Jnl, it can happen at anytime. Mine did not develop for over a year, I have read where some people go years before it develops. You may never get it and I hope that you do not, however it is good to know the signs so you will be aware of it should it occur.

    RE
  • Mikes Sunshine
    Mikes Sunshine Member Posts: 129
    #20
    gerrico1216 said:

    Need information
    How do you know you have lmyphedema? I have surgery 2/5/2009 I still about 170cc of fluid drained each week. Dr. says its because of tomor and the lymphnodes were side by side and I had 1 node big as tumor. I'm just curious is this normal?



    Hugs,
    darlene

    Jackie
    I am so sorry to hear that you are having more problems with lymphodema. I know it has been something you have been struggling with for a while now. I am being treated by a specialist also. I have been going for 3 weeks now. She does gentle message to all lymphnode areas in my body to try to get them to accept the extra lymph fluid from my arm. Also she wraps my left arm from my fingernails to my armpit. It helps to squeeze the fluid out of my arm. About your job did they say if your sleeve will have a sepperate glove? They have ordered custome fit sleeves for both day and night time wear. The day sleeve has a sepperate glove. The fingers will have open tips. I work with special needs kids and there are diapers involved in my job. I was told I could put a rubber glove over the sleeve to change diapers and the glove part can be removed easly for hand washing or cooking. At this point changing jobs is not an option for me as I carry the health insurance. I am going to try to do the best I can with the glove and sleeve on. I know you have other issues involved in your job but I hope maybe this info helps a little. Love.Nancy
    Ps this is the reason I have not posted much- very difficult to type all wrapped up. I do continue to read all the postings. Keeping you and all the sisters in my heart.
  • cats_toy
    cats_toy Member Posts: 1,462 Member
    #21
    RE said:

    answers
    I have dealt with lymphedema for nearly ten years now it is permanent. Mine is from node removal and a lot of radiation (I had 16 weeks of rads). Some days it swells less than other, however you must be very careful with the effected arm because infection is a real danger. I have had several infections one which turned staph on me and nearly required hospitalization. You just have to be mindful of the fact that you have it and treat the arm and hand with care.

    RE

    16 weeks of rads? why so many? my doc told me 6 to 8 weeks plus boosters is the norm. So sorry you have had so much trouble with the lymphedema, they did tell me it is something I would need to worry about the rest of my life. Thank God, so far (two years from surgery), nothing has happened. I did get 3 fingers swell up, but they think that might be the Arimidex. So now we all know, you are the "go-to girl" for any questions on this and having fun with the grandsons!
    thanks for all the info again.
    Cat

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