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Topic: Welcome, RobinTN!

Forum: Lymphedema — Risks, tips for prevention, and info about products that can address the symptoms of lymphedema.

Posted on: May 14, 2006 07:36PM

Binney4 wrote:

Only I'm sorry you have to join us here on the lymphedema (LE) board. Goodness, but you've been reading the board here! Lots of questions, but just wanted to assure you that all of us have found this LE a steep learning curve, and few of us were told much about it by our medical team. Too many doctors have little training in diagnosing or treating LE and some can be relunctant to recognize it. NPat posts here often, she's a NP and until she developed LE knew next-to-nothing about it either. It is not taught in nursing programs, and many med schools cover the entire lymph system in a single day's lectures. So we have to do a lot of advocating for ourselves.

I know you'll find lots of information on the lymphnet and lymphnotes sites. But just to run through some of your questions:

LE is for life. It does not go away, though in the earliest stages it may be relieved by elevating the arm. Later stages involve permanent damage to the tissues, the development of fibrotic tissue, and further difficulties with lymph flow. The major medical danger of all this infection, which can quickly become systemic since it involves the lymph system, and sometimes requires hospitalization. Untreated, of course, the infection is life-threatening.

There is currently no certification process for LE therapists, so anyone with as little as a week's formal training in LE therapy can advertise themselves as a qualified therapist. We each need to ask questions of any therapist: they should have at least 135 hours of specifically LE training beyond their OT or PT training, and at least a year's supervised experience treating LE. I mention that because you need to know that the standard treatment for LE involves not only a period of frequent massage by the therapist (training you to do it yourself, as well), but also daily wrapping of the hand and arm for a period of time (around 2 - 6 weeks -- varies according to the school the therapist went to). Following that, the therapist (or a qualified fitter she recommends) measures you for a glove and sleeve (the sleeve alone can force the swelling into your hand and give it no way to get out). These are generally worn during the day, and the hand and arm wrapped at night (or you can get special night garments that take the place of wrapping after the initial therapy phase). The therapists massage helps to encourage new pathways for the lymph to take in draining from the arm; the wrapping further reduces the swelling and prevents the arm from re-filling; the garments maintain the reduction once the therapy ends.

There are a number of companies that make compression garments. The widest known are probably Juzo and Jobst. Bio-Concepts is a smaller company that evolved from being a burn-garment maker. They do have a web site at: http://bio-con.com , but your therapist and/or fitter may not have heard of them or deal with them. (Night compression garments that replace the wrapping include Jovi-Pak, Reid Sleeve, and Solaris.)

And finally, the pink alert bracelet may help, but you may need to take stronger measures (for one procedure where I wore the pink bracelet, they made me take it off because it wasn't issued by the hospital!) Make sure directions not to use that arm are written in the doctor's orders, tell everyone you see when you get there (especially the anesthesiologist), and write it all over your arm with permanent marker (comes off later with alcohol). Getting your doctor to sign the directions on your arm is a major move toward self-protection -- love it!

Okay, what you most need to know is that this is something you CAN deal with (we all wonder about that from time to time!) You can learn to massage, to wrap, to take meticulous care of your skin, to do the exercises that help, to use and care for compression garments. And when you do, your life will be back in your own control. It's doable, Robin, even if it can seem like a long, rough trip. You're not alone, either, as all the women here are with you on this. Please let us know what you discover and how it's going. And how we can help!

Hugs,
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May 14, 2006 11:22PM RobinTN wrote:

Binney,thank you so much for the warm greeting and also for the info.Boy you are a wealth of info as Pat has already told me.I am way behind in my treatment.I only saw the OT one time and she said there was not much could be done while i was still getting rads.But have been finished now for almost 4 weeks.So guess maybe I should go back.

She mentioned a compression garment,but nothing about wrapping at night.it does help to elevate my arm.

I am finding my left arm is much weaker than my right,and feel heavy and tight.

I posted a note to Pat tonite after she introduced herself to me,I to am an RN although not a NP yet,but hope to be if I can ever get myself back together and get to the books.But anyway,last week I developed a boil,in my bad arm almost at the arm pit,it ruptured and left a huge draining hole,that I dressed for several days and took keflex for a week.Now the area feels hard where the boil was.I am not scheduled to see my onc for another 2 weeks and wonder if I should go in sooner? I sure dont want to end up in the hospital.

That is a good idea to write on the bad arm and have the doc sign it.I will make sure I tell everyone who will listen to me about my arm.

I have been looking at some LE training programs,and think maybe I might go for one and become LE certified,since there are not that many around and a lot of people with this problem.

I know since this cancer dx I want to do something to really help ca pts,I have never wanted to work with them before now,but I can now look them in the eyes and say "I know how you feel" cause we do know how they feel.

I was diagnosed at 42 stage 4 w/mets to nodes and liver the liver had 2 areas of mets.My onc thought I would not make it.But Praise be to God I am here today and have NED!!

Again may thanks for the info and the warm welcome.I will keep in touch.
Robin....."I wont back down".... Dx 11/3/2004, IBC, 6cm+, Stage IV, Grade 3, 1/9 nodes, mets, ER+/PR+, HER2+
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May 17, 2006 08:15PM Binney4 wrote:

Wow! If you decide to take the training you'll have all of us lined up asking you about a ba-zillion questions! A bc.org LE therapist of our very own -- go for it!

Binney
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May 17, 2006 08:45PM RobinTN wrote:

I am looking into it.I see there is a great need for a LE therapist.Will let all of you know.

Robin....."I wont back down".... Dx 11/3/2004, IBC, 6cm+, Stage IV, Grade 3, 1/9 nodes, mets, ER+/PR+, HER2+
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Jun 7, 2006 03:50AM denny4 wrote:

Robin, I also have LE, just had bil. mast. 4 wks ago, will start chemo Thursday at West Clinic in Memphis. I'm not sure how to get it out of my armpit, I have a lot of trouble in that area.
I am 47 and have finished one year of nursing school and hopefully be able to return in August.
I am new to this site, and am not sure how to use it.
Denise
Denise Dx 4/2006, ILC, 4cm, Stage IIB, Grade 2, 1/27 nodes, ER+/PR+, HER2+
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Jun 7, 2006 01:13PM RobinTN wrote:

Hi Denise
It takes awhile to learn to manuver this board or at least i had problems at first.What I like to do now if i post something that i want to follow up on I go to the bottom of the page and save it.That saves it to your home page and you can go there and check and see if you have any replies.
I had my bilat mast it will be 1 year june 30 and am just in the last few months starting to have trouble with LE.It is depressing.
I hope you can return to nursing school in August also.I have been a nurse for all of my life really.Since I was 19 years old.My oldest daughter was not even 1 when I started and she just turned 26.
This cancer is terrible,it has cost me so much.I had a wonderful job that i worked very hard to advance to.But was not able to keep it once I started chemo as it was an upper management position and things had to be done timley i guess.I did try to return to work against my onc better judgement,but the only thing for me to do was data entry and i couldnt even do that at the time.I would work 2 days a week and it took me 3 weeks to recover from it.
I am waiting until I have recon befor searching for another job as I dont want to go to work and have to take off after a few months that is not good.
I hope everything goes well for you.I am quite aways from Memphis,wish we were closer,I sure could use a buddy my age.
I am very lonley and having a hard time adjusting.I have spent the whole morning crying and dont know why.
but enough about my woes,if you ever need someone to talk to just send me a pm.the way to do that is to click on my name and at the bottom you will see send a pm.
Take care!!
Robin....."I wont back down".... Dx 11/3/2004, IBC, 6cm+, Stage IV, Grade 3, 1/9 nodes, mets, ER+/PR+, HER2+

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