Help, rash on arm with Lymphadema

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flowerchild70
flowerchild70 Member Posts: 4
edited June 2014 in Lymphedema

I have had a rash that started only on the upper part of the arm.  The oncology department told me that they wouldn't see me and I should go to the ER, Dermatologist, or PCP!  (in that order) I told the nurse that it was my arm with Lymphadema and that didn't seem to matter.  I had the rash start again and my pcp throught it could be shingles.  A dermatologist I finally got to see said that if it comes back call and she would fit me in immediatley.  Well, it is back and it is worse covering a larger part of my arm.  And the dematologist isn't in the office on Fridays.  I am concerned, upset and not sure what to do.  I am treating it locally but not sure if I should wear my sleeve and glove as I do everyday.  Any one have any helpful ieads?

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  • KS1
    KS1 Member Posts: 632
    edited June 2012

    Hi flowerchild70 -- Hopefully, one of the experts (Kira, Binney etc.) will be along, but in case they don't, I will try to channel them.  The big worry with LE is cellulitis.  Have your doctors ruled this out?  

    If wearing your sleeve makes the rash worse, then wearing a sleeve will be counter productive.  Maybe you can take garment breaks (perhaps just wear your glove?), keeping your arm raised.

    When the skin on my LE arm gets really irritated, I discovered that zinc oxide (aka diaper cream) works amazingly well.  Warning, zinc oxide doesn't sink it your skin, so you won't be able to wear your sleeve.  KS1

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  • kira66715
    kira66715 Member Posts: 4,681
    edited June 2012

    Flowerchild,

    If the rash is thought to be infected--cellulitis--you wouldn't wear compression. Since it seems to come and go, and doesn't have a diagnosis, I think you have to proceed with caution and awareness of your arm: if compression feels better, then you can try it. But if there's any question of infection, get medical attention immediately, and avoid compresson.

    How horrible that you couldn't be seen promptly.

    If the topical treatment helps, then hopefully it will get you through the weekend until the dermatologsit can give you a diagnosis.

    Be alert to swelling, pain, warmth, feeling ill--any of that nasty stuff, and you should be seen immediately.

    Please let us know how you're doing.

    Kira

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  • flowerchild70
    flowerchild70 Member Posts: 4
    edited June 2012

    Thank you both for weighing in on this.  I am just so frustrated that oncology have blown me off in seeing it.  My physical therapist wanted it seen back in March which was the first "scare" which was just before I was to start the daily wrappings and massage.  I am scared of it developing into cellulitis.  I choose not to wear the sleeve today and will keep a close eye on it.  

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  • kira66715
    kira66715 Member Posts: 4,681
    edited June 2012

    Flowerchild, I'm more reassured because of how long it's been present, but I share your frustation in the lack of a diagnosis.

    Please let us know what the derm says.

    Kira

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  • flowerchild70
    flowerchild70 Member Posts: 4
    edited June 2012

    Hi Friends,

    well I have no more news than I did two days ago.  I managed to get to see the oncologist (not mine) who wasn't really listening, cancelled my 6 month check up and told me to see the dermatologist.  The dermatologist whose office opens at 8:30 still had the answering machine on at 9:45.  I am no where need an answer.   I did find another dermatologist who returns phone messages and will see him tomorrow.  Hope I have good news.  

    Flowerchild70 

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  • flowerchild70
    flowerchild70 Member Posts: 4
    edited June 2012

    Hi Friends,

    well after seeing the new dermatologist the good news after a biospsy, if indeed it is good news it that the rash is folicullitis.  Nothing definite on how to avoid getting it again but am working on a daily basis trying to prevent it.  I am really saddened by the whole oncology follow through.  I guess when you are done with chemo except for the 6 month check ups you are off their radar until (hopefully not) you get another diagnosis that needs them.  

     Wishing you all a happy 4th of July. 

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  • Kicks
    Kicks Member Posts: 4,131
    edited July 2012

    I guess we all think different - I would not have called my Chemo Dr for a rash after done with TX. I call my PA for any 'thing' I think needs checked out. She's been my PC for 16 yrs so she knows me well - all of me. Twice she has refered me to specialist. My Chemo Dr does insist on seeing me every 6 mths but has said that the only reason he wants to keep seeing me is to be sure I stay on Femara/letrozole because I'm a "high risk" IBCer. He no longer even has blood draws before my 6 mth appts but my PA sends him copies of the blood work she has done for my appts in June and Dec (I see him in Aug and Feb).



    Glad you did get answers.

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