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Topic: Help me who has no professional therapists for LE

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

Posted on: Jun 24, 2006 02:20PM

nowheregirl wrote:

Hi everyone,

Last week, I noticed a slight swelling in my affected arm (right forearm). It's not that big, you can't even tell unless you give it a close look. I wasn't 100% sure if it's LE as I've been on Taxol since April and knew that it causes swellings as well. It's not the first time they put me on it, I did it before I had a surgery and got my legs swollen. I had a lumpectomy along with a node removal (15 nodes removed) in March.
Anyway yesterday was my chemo day and I met with my oncologist. He said he's almost sure it's LE as I've only got my affected arm swollen and none in my left arm. Of course I asked him what I could do to stop the swelling from growing but he wasn't able to say as much as I wished. All he said was that I shouldn't overuse my right arm and give it massage; start at the wrist and gently sqeeze all the way up to the armpit. Are they all I can do at this point? I'm single and have no one that is able to financially support me to pay for my medical bills. I can't lose my job and I do need to drive a lot as my job is taking care of my clients and I have to visited them everyday. I'm so afraid that this swelling might grow up and I would lose my job. What else should I do? I think it's still manageable unless it grows up too big. I was planning a trip this winter to Australia and visit my best friend. Is that too much to wish? I hate that my biggest and worst fear has come true while I've lost to much to dream. Any advice would be highly appreciated. There're no real professional therapists for LE in my country so you're the only one that can help me.

Thanks in advance,
Dx 7/7/2005, IDC, Right, 3cm, Stage IIB, Grade 1, 2/9 nodes, ER+/PR+, HER2- Chemotherapy 7/8/2005 AC + T (Taxol) Hormonal Therapy 3/10/2006 Surgery 3/22/2006 Lumpectomy: Right Chemotherapy 4/7/2006 Taxol (paclitaxel) Radiation Therapy 8/21/2006 Breast, Lymph nodes
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Jun 24, 2006 02:45PM Binney4 wrote:

Hi, Fumi,

I hear your frustration, and I'm so sorry. Unfortunately, lymphedema (LE) is something you have to make room for in your life (just like you did for breast cancer), or else it will take more out of your life than you can afford to give. The problem with even a little swelling is that it indicates your lymph system has broken down, and the lymph system is part of the immune system. Any swelling in your arm invites infection, which can quickly become systemic and require time off from your life while you recover in hospital. So basically, you need help.

I think most of us, if we asked our doctors here in the U.S., would not be told what we can do, or how to find a therapist. Our doctors don't know, and apparently yours doesn't either. With LE we have to do a lot of advocating for ourselves. I say that because, no matter what you may have heard, there are many highly-qualified therapists in your country. Here's a web site to help you find them:

www.mylymphedema.com

When the page comes up, click on the "Therapist Locator" in the center. It will take you to a list of lymphedema therapist schools. Click on the one called "Dr. Vodder School North America." The page that opens will list many countries. Japan is one of them. It lists therapists in the following areas: Aichi-ken, Chiba, Fukyuoka, Hyoga, Hyogo, Kanagawa, Kikuchigun, Nagasaki, Niigata, Oitakea, Okinawa,Saitama, Shizuoka, Tokyo, and Yamagata. I'm not sure where you live, but I sure hope one of those is close to you. Even if it's not, call them or email them and tell them what you need. They should be able to help you.

If not, we sure will do what we can from here, but it's best to see someone with experience and training.

Beyond that, we're all here to help one another with the disappointment and discouragement of LE. Please keep us posted.

Hugs and prayers,
Binney
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Jun 24, 2006 02:58PM Binney4 wrote:

Oops! Forgot a few things.

First, there's a good book you can order from Amazon.com. It's called "Lymphedema: a Breast Cancer Patient's Guide to Prevention and Healing" by Jeannie Burt and Gwen White. It tells about prevention, treatment, exercises, and a really good description of the proper massage technique.

And here are a couple of web sites with good information about LE:
www.lymphnet.org
www.lymphnotes.com
www.lymphedemapeople.org

For now, you might find it helps to keep your arm elevated as much as possible -- on the back of the couch or car seat when you're sitting down, on pillows at night. A long-sleeved compression sports shirt like bicycle racers wear might help. Buy it a size smaller than you'd normally wear and turn it inside out so the seams don't irritate your skin. Limit what you lift with that arm and don't jerk things around with it. Keep it out of hot water as much as possible (dish water as well as hot, soaky bath or shower water). Keep it clean and well moisturized with a good lotion. Be real careful to avoid cuts, scratches, nicks, burns (including sunburn), or insect bites, and of course avoid blood tests, IVs, injections or blood pressure on that arm. Drink plenty of water and limit your salt intake.

And be sure to let us know how you're doing!
Binney
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Jun 24, 2006 03:36PM nowheregirl wrote:

Thank you, thank you, thank you Binney! You just don't know how much I appreciate your responses.
In fact, I only thought that LE is the swelling in your affected arm, didn't know at all that it invites infection. I have two cats so I should be careful as to how to treat them, right? Although they have been my rock ever since I was diagnosed so I can't get rid of them. Will just have to deal with them with a little more care.

I've done a lot of google and found out that there seems to be a well trained therapist near me, about 30 minutes drive away from my work. According to their website, they do what you call "Lymph Drainage". I'll call them tomorrow and see what they can do for me.
I did asked my oncologist about the compression sleeves but he seemed to be a little hesitant about the use of them, at least at this point as they may cause nasty rashes by making me too sweaty. (My skin is too sensitive and my head has got rashes from this silly wig.) He basically said "wait and see" and if it gets worse, we may have to consider sleeves etc. When I meet with that well-trained therapist, I'll ask them about all these things as well.
Can you name some good lotion? I'm cluless. I've been using Johnson's Baby Lotion to keep my arm moisturized but don't know if it's good for LE patients.

Thanks again for being there for me.
Dx 7/7/2005, IDC, Right, 3cm, Stage IIB, Grade 1, 2/9 nodes, ER+/PR+, HER2- Chemotherapy 7/8/2005 AC + T (Taxol) Hormonal Therapy 3/10/2006 Surgery 3/22/2006 Lumpectomy: Right Chemotherapy 4/7/2006 Taxol (paclitaxel) Radiation Therapy 8/21/2006 Breast, Lymph nodes
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Jun 24, 2006 06:34PM wendyintx wrote:

Fumi,
I'm so glad Binney has given you some sound advice. I had already googled therapists in Japan before reading your last post. So glad you found one. As for compression sleeves, what I've seen on these boards, is that people often use them to prevent LE or to help it from getting worse. There are many women who just wear the sleeve when flying to reduce the risk. I think I told you about a friend of mine who has it, has 2 busy kids, and she's a flight attendant. She got fitted with a custom sleeve and wears it pretty much all of the time. I hope that you'll be able to contact the pt. I'm sure he/she will be able to order you a sleeve. I know you love your oncologist, but his expertise is not LE, so I'd definitely get more info.

Please let us know how you're doing, sweetie. So sorry this has happened, but it is doable and with your strength and determination, YOU can do it!!

Many hugs to you,
Wendy
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Jun 24, 2006 07:32PM nowheregirl wrote:

Thanks Wendy for kind words as always. Yep I do remember the story about your friend who has been working as a flight attendant. When I call and see the LE therapist, I'll ask them about the sleeves.

I wish I lived in the country where drivers keep to the right side of the road so my car must have been left hand drive. It's hard to elevate my right arm when driving on the right seat.
Dx 7/7/2005, IDC, Right, 3cm, Stage IIB, Grade 1, 2/9 nodes, ER+/PR+, HER2- Chemotherapy 7/8/2005 AC + T (Taxol) Hormonal Therapy 3/10/2006 Surgery 3/22/2006 Lumpectomy: Right Chemotherapy 4/7/2006 Taxol (paclitaxel) Radiation Therapy 8/21/2006 Breast, Lymph nodes
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Jun 25, 2006 11:42AM inspiewriter wrote:

I have the book Binney mentioned and it is excellent. My therapist agrees with most everything in it.

And here's a tip--don't just look up lymph. therapists online--doing that I found almost none in my area. Instead look up massage and hand rehab centers--then call and ask if they have a certified lymph. therapist. Had a lot more to choose from that way!

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