CSN Login
Members Online: 14

Lymphadema Sleeve and Gauntlet

joannstar
Posts: 347
Joined: Nov 2010

Hello all. It's been a while since I've checked in...sometimes reading the posts are just too upsetting (if you know what I mean). I'm coming upto my 3 year anniversary (8/19/13) since the second "partial mastectomy" after which I had 6 rounds of T-C and 33 rads.

I'm getting ready for my first flight since diagnosis and went to get a lymphadema sleeve & gauntlet that will arrive tomorrow. Then back for training. I'm upset about this necessity--anyone else feel this way?

coco2008's picture
coco2008
Posts: 406
Joined: May 2013

I haven't had to use the sleeve, but if it helps you, just wear it under a long sleeve shirt and no one needs to know your secret. 

You have been through so much already and I can imagine what it means to have CA still calling the shots in areas of your life.  But in reality it's YOUR life.  Do  what you need to do for your health and comfort.  Hold you head high, close you eyes and picture yourself kicking the stuffing out of CA and watch it bounce helplessly down the hill.  After all, YOU ARE THE WINNER.

Have a great flight and a happy life.

Sandy

SIROD's picture
SIROD
Posts: 2121
Joined: Jun 2010

I am sorry that you find some of the posts upsetting but this is the reality of breast cancer.  Some of us do have to deal with stage IV.

It has always been my understanding that one doesn't need a sleeve until one develops lymphedema.  I read this on web pages on lymphedema.  How can they measure your sleeve to move the lymph if you don't have the problem?  No one yet knows why some women develop the condition and others don't.  

I developed lymphedema this year at the same time my ct scan showed progression in my left lung.  I no longer had any hormonal drugs to use so I had to go on to chemotherapy.  Due to chemo and a lot of other issues, I put off being fitted for a sleeve until May.  I finally received my compression sleeve and glove a few weeks ago.  I was fitted by a certified lymphedema fitter.  I will soon be starting treatment for this arm.

I have flown extensively since I was diagnosed in 1994.  Some of the flights were very long.  I had my first lymph node dissection with my mastectomy at diagnose.  There was no such thing as sentinel node biopsy at the time.  I had 27 lymph nodes removed from level 1.  There are 3 levels of lymph nodes in the axilla.  In 1999, a ct scan revealed a good size tumor in the axilla.  I wanted the tumor out though my surgeon did his best to try to talk me out of it.  I wish that I had listen as a developed neuropathy on that side.  He removed most of the tumor that had wrapped itself around the large vein for the arm.  He removed level 2 lymph nodes and a few of level 3.  I then had radiation to kill the rest of the tumor and the area it was in.   I had 4 bouts of cellulitis that was serious enough to require a hospital stay with IV antibiotics.  I did not develop lymphedema.

From 1994 to 2013 I didn't have the condition.  Something brought it on all these years later.   I knew there was no time limit for the condition.  I was always careful about cuts, pin pricks or any trauma to that hand and arm.  I carried a kit with me all the time in case.

I will agree with you about being upset.  It is the last thing I needed this year.  I find having to wear it all day a real pain.  When I need to handle wet clothes to put in the dryer, do dishes or wash my hands and etc.  I have to keep removing the glove.   At the end of the day, I am really tired of the sleeve.

Grateful for all the years the condition escape me and I am so very sorry to have finally been diagnosed to have lymphedema.  

I wish you the best,

Doris

ladybug22's picture
ladybug22
Posts: 647
Joined: Sep 2008

it ia a pain i hate the sleave it is hot    takes up a lote of my time . god is going to take care of it for me

cinnamonsmile
Posts: 1049
Joined: Dec 2010

I have heard of women without an LE diagnoses wearing sleeves and/or gauntlets when flying. The pressure from the airplane ride itself can trigger LE, either for the first time or a flare up.

I imagine the fitters would just measure the arms as they are now for LE garments.

I can understand why you are unhappy to wear them when you fly, but I have to wear mine almost every day because I do have LE. I guess if I were in your shoes, I would be happy to wear them to prevent LE. I was given no information on what to watch out for about LE. I even had LE for about a year before I was finally diagnosed, even though I gave very specific information about my LE symptoms to an LE therapist in 2011. 

It is much worse to HAVE to wear them ALL the time (or almost all the time) as opposed to just having to wear them when flying. Perhaps thinking about it that way could change your attitude (although I do respect your feelings).

Try going to breastcancer.org and go to the Lymphdema section. You will see how lucky you are right now not to have it.

Rague
Posts: 3277
Joined: Aug 2009

Did you see a Certified LE Therapist?  Not just some employee at a  "store" or a PT that claims to know about LE..

There are so MANY variables!!    I can only speak for myself.  My LE started 1/2 way through 12 weekly Taxol (had already done 4 A/C neoadjuvant had mast. 3 weeks before starting Taxol.

I deal with LE daily.   There are different levels of compression/different fit.  For me, I have to have light compression as heavy compression make it SO MUCH worse.  I  also use a night sleeve ( night sleeves work on different principles  than  day) and my Flexi-Touch machine daily.

Because 'I'm weird' (somewhat wedded hands), all my garments have to be custom  - long 'skinny' arms too.  I also prefer cotton garments over syntic - we live where summers can VERY HOT. Winters are are brutal  here also.    

Winyan - The Power Within

Susan 

ladybug22's picture
ladybug22
Posts: 647
Joined: Sep 2008

i dont have one  i was told i needed it but 9000 dollors was just a little much for me

 

RE's picture
RE
Posts: 4606
Joined: Feb 2004

I have been wearing one for ten years plus and yes at first I was MEGA upset that I had to wear one, however once I got into the routine it was not so bad.  I appreciate the fact that it lessens the pain and protects me from sunburns, insect bites, cutes etc all of which can cause infection which you most certainly do not want to have happen.  Trust that it is a good thing for you to have one and in tme it will become second nature.

 

Hugs,

 

RE

joannstar
Posts: 347
Joined: Nov 2010

I thank all of you for your comments. Yes I did see a certified lymphadema specialist. I was told, that because I had 4 lymph nodes removed (thankfully negative) that I have lymphadema but am asymptomatic. I first checked with my onc who recommended it. I used it on both flights and it was ok--not as bad as I had feared. I've even scheduled another flight in September.

So yes, I am glad to be asymptomatic and hope to stay that way. Yes, I am glad that there is a device that I can use to help me achieve this.

I value all of your input and Sirod--you have so much experience, thank you for being here to show us your courage and strength. I am sorry that we've lost so many since I found this board...I know that is the nature of this beast.

 

Hugs,

JoAnn

cinnamonsmile
Posts: 1049
Joined: Dec 2010

I am glad to hear that everything went well and you didn't have an LE flare up!! Great news!!! Thanks for giving us an update.

SIROD's picture
SIROD
Posts: 2121
Joined: Jun 2010

Thanks JoAnn.  However, I am a newbie with this lymphedema business.  I have the sleeve and glove and was suppose to start treatment in August.  When I called, the woman said, she didn't have me down.  She will have the lady who does those the treatments call me on Monday.  I will be calling her as soon as the place opens.

Rague (Susan) How much do those pneumatic compression machine cost?  I wish my area had a real lymphedema place.  I read that they had places where you can go rent one for a few hours on them.  I think the cost is probably way over my budget too.

There are times I do become upset that I have to deal with the arm also after 18 years, along with uveitis, PTTD, stage IV, sleep apnea and all the other medical issues that I have.

If you wear your sleeve and glove, it stays the same?  I've been trying to read up on it.  My mother just had a bad stroke and has Alzheimer's too.  I am trying to educate myself on her problems.  I thought dementia and Alzheimer were not the same, stupid me.  So until two weeks ago, I thought she had slight dementia.  The stroke has given her big gaps in memory lost.  I lost my dad in April and I know that I have been lucky to have both parents for so long.   However, it been a week.... 

Doris

 

 

 

usdoc1ga
Posts: 1
Joined: Oct 2013

SIROD, I am a physician and a breast cancer survivor. It is very unfortunate, but we found out that our daughter also was found to have early stage breast cancer. My sister also had it almost 6 years ago. She has severe lymphadema of the arm.

You can either look for a Jobst or similar pump on the internet at sites like Craig's list or Ebay. These are generally used pumps but function well. I bought one for my sisiter for $150.00. One worn the pump (electric) fills air in the sleeve alternatively and pushes the lymph out of the arm. Once the arm is small you can wear the sleeve (non pnumatic) and sleep with it. You will find great relief from this. Hope this works for you. Please check "govdeals.com" site also. Occasionally they have such devices there. This is an auction site.

Rague
Posts: 3277
Joined: Aug 2009

I have never heard of a MLD machine for $150.00.  My Flexi-Touch MLD machine cost about $12,000.00.  I don't know exactly how much as I get my care through the VA so I never see a bill.  The machine is a computerized box with 4 hoses that attach to the 3 garment parts (lower body/upper leg, chest, arm).  The cycle I use takes 1 hour to run.  It starts with the lower body/upper leg, then moves to the chest and finally the arm in 3 segments.  After that 1/2 hour it reverses and continually moved from finger tips up and around and down to upper leg and starts all over again til that 1/2hour is up and it shuts off.  Definately not some $150.00 gadgit.

Certainly night garmemts may be necessary but they are designed to be worn at night - they work on a very differemt principle than do day garments.  Day garmemts are designed to work with an ACTIVE arm - they need movement to work.  Night sleeves  are designed for the INACTIVE arm - they work without the arm moving.

I use my Flexi-Touch daily, wear my day garments daily amd my night garmemts nightly and keep my LE under control even though I'm a very active outdoor woman.

Winyan - The Power Within

Susan

Subscribe with RSS
About Cancer Society

The content on this site is for informational purposes only. It is not a substitute for professional medical advice. Do not use this information to diagnose or treat a health problem or disease without consulting with a qualified healthcare provider. Please consult your healthcare provider with any questions or concerns you may have regarding your condition. Use of this online service is subject to the disclaimer and the terms and conditions.

Copyright 2000-2014 © Cancer Survivors Network