Key links to Lymphedema pages on bc.o site

Melissa7

Probably the best place to start:
http://www.breastcancer.org/lymphedema_avoid.html

We hope that this is helpful!

footprintsangel

Hi,  My Name is Debbie and am a new member, I have had IDC breast cancers stage 3,  3 surgeries ,chemo and  now full lymphedema. I will enjoy learning more so I can help others. I will love to here more. I also am one of the mangers for Lymphland.com and am loving to learn. You sound like a very nice group and I want to learn more about my fight. Take care, Debbie

Anonymous

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slws

Hi, my name is Susan and I was diagnosed with Her2 breast cancer in my left breast in 2/05. I had 2 lumpectomies, chemo and 33 rounds of radiation. I then developed lymphedema in my left arm in 1/07. In March of 07 I began using the Sequential Circulator - an arm sleeve and pump made by a company called OJMedtech out of NY. This product, used daily has kept my lymphedema from progressing, and has actually reduced the size of my arm. I am much more comfortable since beginning use. I hope this helps those of you who are still searching for something to help.

Susan

slws

Hi, my name is Susan and I was diagnosed with Her2 breast cancer in my left breast in 2/05. I had 2 lumpectomies, chemo and 33 rounds of radiation. I then developed lymphedema in my left arm in 1/07. In March of 07 I began using the Sequential Circulator - an arm sleeve and pump made by a company called OJMedtech out of NY. This product, used daily has kept my lymphedema from progressing, and has actually reduced the size of my arm. I am much more comfortable since beginning use. I hope this helps those of you who are still searching for something to help.

Susan

Binney4

Welcome, Susan!

Sorry it's taken so long for anyone to answer your post, but this thread at the top of the board has been here so long I think nobody looks at it anymore.

Glad you've joined us, but sorry it's lymphedema that brings us together! Sequential-type pumps can be a helpful adjunct to Complete Decongestive Therapy (though I've never heard of yours in particular), and many of the gals here use them. Glad it's helping keep you comfortable and in control.

Congrats on being three years out from bc treatment. Do come join in on the other more active threads below this one on the Lymphedema board, and I'm sure lots of other women will be there to welcome you. (This top one was started by the moderators over a year ago, so it's sort of off our radar.)

Be well!

Binney 

Binney4

Hmmm, the curse of the duplicate posts again!

bestock

I just had bilateral on June 3 my left arm, cancer side I had 7 nodes removed and a few in 06 when I was first dxed. My arm is huge and numb, I hope some of it will go away. Please any advise please..I like the idea of pump and sleeve, or will some of it go away.

Binney4

Aw,bsnevada, I'm so sorry, and I'm sure hoping what you're dealing with is nothing more than normal post-surgical swelling. But the best way to know for sure is to ask for a referral to a well-qualified lymphedema (LE) therapist. You can find one near you (well, at least in Carson City ) by using the Therapist Locator at www.mylymphedema.com. Click on the Locator, then follow all the links (a couple of them ask for your zip code and email and will send you a list, others are listed on-line by entering your state.)

A LE therapist will measure both arms, do a gentle physical exam, and evaluate your swelling. If it's LE, then she'll set you up for some therapy, which involves a couple of weeks of gentle massage (called Manual Lymph Drainage, or MLD), wrapping in special compression bandages, exercises and skin care. She'll teach you to do the MLD and wrapping yourself, too. Then when the swelling is down, she'll fit you for a compression sleeve and glove that you can wear to keep it that way.

Here's a web site with lots of information about LE, the National Lymphedema Network at www.lymphnet.org. Their Position Papers are especially helpful.

The pump is sometimes used along with the MLD, bandaging, garments, exercises, and skin care, but it is not a substitute for them, so you'll want to see a well-trained therapist and work out with him/her the best treatment for your needs.

Please stay in touch here and let us know how we can help.

Gentle (((hugs))) and prayers,

Binney 

footprintsangel

Hi Binney and Friends   I got my ALERT:LYMPHEDEMA No Blood Tests,Blood pressure,IV or Injections into this Leg!10 green anklets with snaps. You can order them(free) on www.lymphedema.com or 1-800-29-EDEMA

I also got a book of other things for lymphedema. I need to get going I see the cancer Dr tomorrow. If he does nothing I am changing. Very swollen and sore. Gentle hugs, Debbie 

Binney4

Hey, Debbie!

Good for you! They also have bright pink arm bands with the same message. It's a nice service they provide for us.

Thinking of you today as you see the doc and get things straightened out. 'Bout time! Let us know how it goes.

Hugs,

Binney 

footprintsangel

Dear Binney and Friends,  I am very tired and swollen, But I saw the new cancer dr and he sounded like he cared til I found out my bp was low and they didnt take a blood test. I was told no cancer in my lung, inflamed like my thyriod.He gave me hydrocortisone 5 for5 days. I hope I care get him to help me. I want to stay ahead of all my challenges. Thanks for caring, I am going to take a pain pill and hit the sack. Luv, Debbie

footprintsangel

Hi Binney and Friends,  I have been busy trying to get my new lymphedema garments. They where ordered awhile ago. I will be getting cut off of the states help soon cause I have to much that I am getting from my disability payment.  I know it was order before, Should I fight them if I lose my one insurance. I have an appt on the phone this Thurs to find out. I hope I get them, My old ones are not working good and getting holes. Take care, Debbie

Alyjens

Hi Debbie,

Isn't it amazing how much this LE can cost?!  I have a $40 copay for each MLD session and insurance only covers 1/2 of medical supplies. You should definately call them.  Your garment should be covered if ordered when insurance was effective.  I was concerned with my out of pocket costs and the American Cancer Society sent me a letter of organizations that help with LE supplies and copays.  I don't know how much they would help but it's worth a try.  Maybe the ACS could give you some assistence with the insurance issue, too?  If you send me a private message, I'll email the list to you.  Also, most people don't know that if they receive services at a non-profit hospital, they may qualify for reduced out of pocket expense.  My hospital in PA, has a sliding scale depending on income and I was surprised how high the threshold was to qualify for the first discount level. I only found out about it a couple months ago and I used to work there until the bc!   It's worth looking into.  It really helped me handle the therapy costs.

Good luck to you Thurs and prayers that you get your garments soon.

Alyjens 

Binney4

Hi, Alyjens,

Is the list of organizations just in your local area? If not, would you consider posting it here? There are lots of us who could use help with the LE expenses. I tease my husband that after all these years he's now suddenly married to an "expensive woman."

Sigh!

Yes, Debbie, I agree with Alyjens -- Go! Fight! Win!

Binney 

Alyjens

Binney, this is the context of the letter I received from the American Cancer Society in PA:

      .....included is a list of possible resoures for assistance with lymphedema suppies and copays.  Please contact each and explain your situation.  There may be eligibility criteria, but they will be able to clarify their services when you call.

Patient Advocate Foundation (PAF)    866-512-3861

Living Beyond Breast Cancer             610-645-4567   (local PA number, but worth a try)

Linda Creed Breast Cancer Foundation  877-992-7333

American Breast Cancer Foundation (ABCF)  877-539-2543

Patient Access Network Foundation (PANF)   866-316-7263

HealthWell Foundation        800-675-8416

CancerCare              800-813-4673

I don't know if these are local to me in the Phila, PA area or not.  So far, between the help the hospital is giving me and my insurance, I haven't felt the need to call.  Though with my upcoming rads, if I can't work for a while, I'll need to.  It can't hurt to call them and see if they are a national organization or not.  Or I would suggest calling your local ACS and seeing if they have their own list of resources for your area.

Hope this helps some of you!

Alyjens

enjoylife

My name is Maura I have been busy and have not wrote in a while I too have had chemo and now almost done with 33 rads which was a piece of cake after chemo. I am 9 weeks out of chemo and I had a sleeve ordered but it was a Jonco I think the name is and it is a Med they are reordering a small for me and if this doesnt fit I am not sure what route to take. I find if I elavate my arm at night it helps I am also meeing with a lady on campus who will show me how to set my arm up since I am infront of the computer all day and it makes it sore. Does anyone have any suggestions the rads has made the swelling a little larger still not bad since the weather has cooled off.

Thank you for listening to me..

Binney4

Hi, Maura!

I sure hope the new garments fit. It can be a real hassle finding the right combination of things to keep the swelling down. Have you had the LE therapy with massage and wrapping? That's the best way to start, because it not only gets the swelling down but teaches you to do the massage and wrapping to help keep it that way. 

CONGRATS on being near the end of active treatment!!! About time to start taking your life back. Whew!

Keep us posted on your new sleeve (and glove?)

Big hugs!
Binney

unique

Hi gals -

I've done surgery, chemo and now starting radiation. Lost 12 lymph nodes to surgery, so planning to see an LE PT.

Binney4

Whew! Last lap! Hope the radiation goes quickly and smoothly. GOOD for you for seeing a LE PT! Make sure it's one who's well qualified. Here's some information on finding one near you if you need help with that:

http://www.stepup-speakout.org/Finding_a_Qualified_Lymphedema_Therapist.htm

Do let us know how it goes. It'll be good!
Big hugs,
Binney

unique

Hi Binney,

I copied the local LE PTs from the LANA site. Just a question - the list for my state had a group of about 10 that had "member" next to their name. Then an alphabetical list that was much longer, some of them had LANA-PT next to their name. What would be the difference between the first and second groups? Second group had two in my area, first group didn't, closest was about an hour from me.

Binney4

Hi, Unique,

All the names on the whole list will be fully-trained lymphedema therapists (both PTs and OTs). The ones with "member" after their name have paid an extra $45 to join the LANA Therapist Board. I'm not sure why they do that (except that they obviously get to list their names first!) So do feel free to use the ones from the second group -- no problem there.

How's the rads coming along? Seems like forever when you're going through it, but it really does end, so hang in there!

Let us know what you discover!
Binney

kerry_lamb

Binney. could I just say once again: THANK YOU for the amazing, tenacious, comprehensive interest you take in LE and the sufferers, newbies and potentials!!! I'm always alert, mainly because of your info and wisdom. You rock!

Binney4

Thanks, Kerry,
Made my day!
Binney

unique

Hi - I didn't start yet. I got mapped about a week ago, and they want me to come in to confirm the plan once it's complete. Then I start. So I don't know when. Binney, thanks so much for the info, it's a life saver!

unique

Oooh such a quiet board.

Anyway, I went in to see my LANA therapist today, Jane Roche, and she was EXCELLENT.

She massaged an area about 3" below my armpit that has a little bit of swelling, snapped some cording (this does not hurt), and gave me mucho exercises and told me to get a script from my rad onc for a pressure sleeve. I feel I am in good hands to prevent lymphedema.

Binney4

Hi, Unique,

Didn't "recognize" you with your new avatar! This thead is quiet, but our lymphedema board is buzzing in the lymphedema threads below this one. Do take a look, as there's lots of new information flying around!

I'm really glad you're comfortable with your therapist -- makes it so much easier to stay in touch with her and ask all the questions that come up down the road. Sure hope the "mucho exercises" help. We have one thread below where we're all encouraging each other to keep up with our exercise routines. It's called "The 2009 Exercise Challenge!!" Do feel free to come join us!

Hugs!
Binney

sherry2007

Not sure where to post:

I went for my first therapy this past Wednesday. She wrapped my arm and I felt like a mummy! I wore the wrapping over night, took it off the next morning to shower and could not figure out how to wrap it by myself. She made it look so easy. So I've been wearing my sleeve since Friday. My husband tried helping wrap me today but it feels a little tight. Any help on how to teach him would be greatly appreaciated! 

Binney4

Sherry, therapists sure do make it look easy! But there's an awful lot to it, so it takes a lot of instruction and practice to get it right. I'm hoping you have several appointments this next week, yes? A Therapy Intensive, where they do Manual Lymph Drainage massage and then wrap your arm for you, is usually done daily for a least a couple of weeks (or at least several times a week). If your husband can go with you to your next few appointments she can teach him and you both.

Until you have a chance to learn it from the therapist, wearing your sleeve and glove or gauntlet is probably better than wrapping it with too much pressure in the wrong places. Elevate your arm as much as possible, stay really well hydrated, and do some deep abdominal breathing at intervals -- at least until you can see your therapist again and get a schedule in place for treatment and education.

Let us know what you discover!

Hugs,
Binney 

sherry2007

Thanks Binney, I go back Wednesday and Thursday of this coming week, then after that they are going to try and get me in 3 days a week. After July 1st my insurance changes and I'm not sure if I'll be able to pay for office visits. Right now I have NO copays. My husband works for the school system and hes off work starting Monday until school goes back in September.

Now I know why she asked if my chemo brain ever went away. 

PammyJane

What do you folks with LE in you hand and arm do for pain?I just found out I had LE in my chest,back. It's called trunal LE if I spelled it right. All I know I am an really bad pain. Bee hives string in my chest, and ALL FUYLL SHARP SABBING PAINS, and so much more...I had both breast off and the hurting arm is the one that has 16 lympnodes removed 1 1/2 years go. I don't likeanything touching my skin. Last night it felt like bugs were eting my insides! When the sharp pains strat stabbing, At first it;s the worst pain, but it wears of with in 10 sec and then seen to go other the other pain I have and makes it wores.I had 33 rediaton tre. 7-9 in 2010. Do any thing help?? PammyJane