Lymphoedema and recurrence fears

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124

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  • Andij
    Andij Member Posts: 115 ✭
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    That is a good idea Ne. If I had done that I may have not gotten to this stage.  Thank you for your kind words too :) Stay vigilant, but don't let it rule your life whatever you do. Stress less:) 
  • Andij
    Andij Member Posts: 115 ✭
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    socoda said:

    Hi lovelies, There is research being done - don't give up hope!! http://www.upi.com/Health_News/2016/06/23/Method-to-reroute-lymphatic-system-may-help-lymphedema-treatment/8841466684985/

    Very interresting article hey:) Thank you for sharing 
  • Andij
    Andij Member Posts: 115 ✭
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    mum2jj said:


    primek said:

    I've got a sleeve through lymphedivas. It it very light. Easy to put on and has the separate hand piece. I am  lucky enough not to need it daily at this time.   Just thought I would share. 

    https://www.lymphedivas.com/en/shop

    They look awesome, just worry because I need custom made garments that if I get the measures wrong they may not suit.
    Paula x

    I will be definitely looking into this. They look so great:) - well in comparison to what I have anyway lol
  • briseis
    briseis Member Posts: 7 ✭
    edited March 2017
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    primek said:

    I've got a sleeve through lymphedivas. It it very light. Easy to put on and has the separate hand piece. I am  lucky enough not to need it daily at this time.   Just thought I would share. 

    https://www.lymphedivas.com/en/shop

    Hi Primek,

    How do you find the sleeves? My physio said not to get them as they don't compress very well. She has ordered a custom made sleeve from Varisan. I like the Lymphedivas but don't want to spend that money on ones that don't work. I need daily compression but don't need to wear at night.
  • Afraser
    Afraser Member Posts: 4,373 ✭
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    My therapist is happy for me to get one for a bit of fun but has warned it's simply not the same as my 'real' one and can't provide the same effect on my arm. So great for an occasion but not suitable for me all the time.
  • mum2jj
    mum2jj Member Posts: 4,330 ✭
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    briseis said:


    primek said:

    I've got a sleeve through lymphedivas. It it very light. Easy to put on and has the separate hand piece. I am  lucky enough not to need it daily at this time.   Just thought I would share. 

    https://www.lymphedivas.com/en/shop

    Hi Primek,

    How do you find the sleeves? My physio said not to get them as they don't compress very well. She has ordered a custom made sleeve from Varisan. I like the Lymphedivas but don't want to spend that money on ones that don't work. I need daily compression but don't need to wear at night.

    Hiya Girls,
    my lyphedema therapist said whilst they may be ok for the mildest of lymphedema, they don't really have enough compression. I agree though great for a fun thing to wear every now and again. They do look great. 
    Paula xx
  • primek
    primek Member Posts: 5,392 ✭
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    They do have different compressions and I guess you wont know until you try it, unfortunately. I think you could choose one you like for when going out and want to look really nice, or for daily use once the lymphodema is back to manageable levels. There is the option to ask for assistance or for help on the site if you have more questions.
  • Brenda5
    Brenda5 Member Posts: 2,423 ✭
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    Not advocating this site as I don't know much about it but they had a bit of a write up on lymphedema in it which interestingly lists Tamoxifen as a contributor to it. https://thetruthaboutcancer.com/lymphedema-causes-symptoms-treatment/
  • Afraser
    Afraser Member Posts: 4,373 ✭
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    I confess I tend to be cautious about articles from natural medicine practitioners even if it is about their own experience. May be helpful in some ways but the Belle Gibson story burns and don't start me on Paleo Pete!
  • Vix
    Vix Member Posts: 51 ✭
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    I hear you Andij! I too have been living with left arm lymphoedema which came on a few months after mastectomy & full node clearance in March 2010. Have to admit I have moments where it drives me nuts and stopped me playing high level sport (tennis & netball) & serious gym workouts. But most days I just see it as part of me, can't change it, I manage it well with compression sleeve and have an amazing Physio who specializes in lymphoedema (they are hard to find). I also do my self maintenance and basic lymphoedema exercises. I follow lymphoedema pages on FB which give great tips and advise, and am a member of Lymphoedema Qld to keep in the loop with any new info.
    Living in Brissy during summer doesn't help one bit. Also I am diligent if I garden to wear a long sleeve top and gloves as cannot afford to risk a scratch or insect bite due to the risk of cellulitis. I did get a cellulitis infection Feb 2016 which saw me in hospital for 4 nights and missing a cruise and the irony I did not have a bite, scratch or mark anywhere on me - infectious disease Dr said it can just often be caused by our own skin bacteria, regardless of the high level of personal hygiene. Thankfully I recognized the signs early, went to the ER & admitted, they pumped high dose antibiotics into me. 
     I am so used to going out wearing my sleeve I don't give it another thought unless a random stranger asks why I wear it, I just usually say I have an injury and the pressure garment is part of recovery - I am not one to discuss my private health hurdles with a stranger as I just want to be treated as normal. If we are going out somewhere special ( and I know there will be good air con) I won't wear my sleeve if I can get away with it but always take it in my handbag. So thankful off the shoulder loose tops and dresses are in, as they hide the swelling, sleeve and mastectomy nicely! Stay strong, it's a roller coaster of a journey this ride we are on but we do it and do it with a positive mindset. We never give up! Big hugs x
  • Afraser
    Afraser Member Posts: 4,373 ✭
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    Very much my own feelings! I'm lucky, I don't have much swelling so it's not noticeable. No infections, touch wood, in spite of doing stupid things with roses. I too get a few comments on my compression 'hand and arm' - in the mood, I just refer to it as my bionic arm! My terrific therapist keeps it under control and me amused, and I hear so much worse things on this site. I'd have taken those lymph nodes out too, they were signicantly enlarged and the one that was biopsied was malignant. So no quibbles from me about that.
  • Andij
    Andij Member Posts: 115 ✭
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    Vix said:

    I hear you Andij! I too have been living with left arm lymphoedema which came on a few months after mastectomy & full node clearance in March 2010. Have to admit I have moments where it drives me nuts and stopped me playing high level sport (tennis & netball) & serious gym workouts. But most days I just see it as part of me, can't change it, I manage it well with compression sleeve and have an amazing Physio who specializes in lymphoedema (they are hard to find). I also do my self maintenance and basic lymphoedema exercises. I follow lymphoedema pages on FB which give great tips and advise, and am a member of Lymphoedema Qld to keep in the loop with any new info.
    Living in Brissy during summer doesn't help one bit. Also I am diligent if I garden to wear a long sleeve top and gloves as cannot afford to risk a scratch or insect bite due to the risk of cellulitis. I did get a cellulitis infection Feb 2016 which saw me in hospital for 4 nights and missing a cruise and the irony I did not have a bite, scratch or mark anywhere on me - infectious disease Dr said it can just often be caused by our own skin bacteria, regardless of the high level of personal hygiene. Thankfully I recognized the signs early, went to the ER & admitted, they pumped high dose antibiotics into me. 
     I am so used to going out wearing my sleeve I don't give it another thought unless a random stranger asks why I wear it, I just usually say I have an injury and the pressure garment is part of recovery - I am not one to discuss my private health hurdles with a stranger as I just want to be treated as normal. If we are going out somewhere special ( and I know there will be good air con) I won't wear my sleeve if I can get away with it but always take it in my handbag. So thankful off the shoulder loose tops and dresses are in, as they hide the swelling, sleeve and mastectomy nicely! Stay strong, it's a roller coaster of a journey this ride we are on but we do it and do it with a positive mindset. We never give up! Big hugs x

    Thank yu Vix:)  It is indeed a roller coaster ride hey.  One I often wish I could get off, as do we all of course. Yes, it took me a little while to accept when I got Lymphedema but have accepted it now. It is just the way it is. It has been rough through this hot Brissy Summer. We have never used our air conditioner so much.  Do you wear yours at night too?
  • Chrissy555
    Chrissy555 Member Posts: 7 ✭
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    Thank you for the info, can you tell me which physio you visited?
    kind regards 
    christine

  • Afraser
    Afraser Member Posts: 4,373 ✭
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    An update on my last post - beware the manicure. I did get cellulitis after a manicure - probably not even the salon's fault - pushing down cuticles even with clean implements may be enough to let the sort of germ that would not normally cause any issue at all into the body and the arm is simply not well enough defended. Once I twigged what it was (bit slow there!) it was easily fixed by antibiotics and I was actually quite pleased that it had started to resolve without treatment - something's still working! Been fine since, but don't want to do that again. 
  • lrb_03
    lrb_03 Member Posts: 1,267 ✭
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    @Chrissy555, if you're looking for a qualified lymphoedema therapist,  try this link

    http://www.lymphoedema.org.au/the-register-updated/find-an-ala-accredited-practitioner/

    Hope that helps

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