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Posted 7/8/2005 4:27 PM (GMT 0)
Has anyone had problems being fitted for a lymphedema sleeve? My rad onc wants me fitted for one, but my arm is too small and too long for fitting. They say I will need a custom fitted one or perhaps this ugly thing that fits around my shoulder and straps beneath my breast at the waist. I am very small boned (4 1/2" wrist) and frankly I am wondering if I really need this thing. I do fly about 3 times a year, and my dr is concerned re: radiation therapy.

JUJU tongue

P.S. How in the world have you ladies gained weight? Does food not tast metallic, or salty or chalky to you? Any experience? When will it stop?

Posted 7/8/2005 5:34 PM (GMT 0)

Hi JuJu! In reference to the lymphodema sleeve. It is very, very important that you wear a sleeve when you fly. So, I would have one custom made to fit so that it would be as comfortable as possible. Don't dismiss this because you are so tiny and can't find one to fit. Maybe you could check at some other facilities that have the sleeves and see if there is one that will fit you.

Yes, the wonderful metallic taste. Here are some hints that might help you. Don't drink anything out of a can. Either pour it in a glass or drink from a plastic bottle. Also, I used plastic silverware. Both of these helped me when eating and drinking. Also, when cooking, I found that if I could cook onion w/ the food, it tasted a great deal better. Don't let yourself get rundown because things taste badly. I promise that this will pass also.

Hugs...Deb

Posted 7/8/2005 8:59 PM (GMT 0)
Hi JUJU
I was fitted for a custom made compression sleeve, and I love it. I have tiny wrists, too, and a long arm, so that even the smallest stock size didn't work for me. Insurance covered that cost, just as they would an off-the-shelf model!

My arm continues to be painful, but when I wear the sleeve, the pain is controlled. Also, my PT and OT said I should always wear the sleeve when exercising, and especially when traveling, due to the imoblility involved in sitting for long periods. Flying with the sleeve on is also a necessity, due to the pressurized cabin on the plane. They also told me to stop when traveling every couple of hours to walk about a bit, even on an airplane. The whole lymphadema thing is nothing to mess with!

Good luck to you and take care,
Jean in WA
Posted 8/5/2005 10:05 PM (GMT 0)
I was reading through some threads I missed earlier and found this one.

Do you mean that everyone who is at risk of lymphodema should have a sleeve? I never thought of this.

How do we know if we need one?

Beth
Posted 8/10/2005 2:26 AM (GMT 0)

I have the same question as Beth. I asked my surgeon about a sleeve, and he "pooh-poohed" it. Also, is flying a concern only if you've had lymphodema, or is it  a concern if you've had lymph node removal

Chantry

  

Posted 8/10/2005 1:26 PM (GMT 0)
Flying is the real risk here, and is supposed to be for a couple of years. My med onc poo pooed it also, but my rad onc is the one who recommended it because radiation can have an effect on lymphedema also. She said the more nodes removed, the higher the risk in radiation. I had 15 removed. Ask your med onc, or your rad onc if you have to have one.

JUJU

Posted 8/10/2005 3:41 PM (GMT 0)
I had the sentinel node biopsy in 2000, and they said the risk for lymphedema is much lower than those having the full node dissection. My surgeon told me I would not need it either for flying,and luckily I have had no problems. He had told me though it is not the number of nodes removed (I also had 15) but the fact that there is less cut during a SNB. He said that when they do the full node dissection, they are cutting higher up with the nerve and tissue and that is what places a person at higher risk for lymphedema. Definitely ask the surgeon or rad onc about what your needs will be.
Lori
Posted 8/11/2005 12:56 AM (GMT 0)
Ok, so a follow up question, What's the difference between a sentinel  node dissection and (oops baby's crying and now I've forgotten the name of the other type) and the other type of node removal??

Posted 8/11/2005 1:06 AM (GMT 0)
another question, how do they determine how many nodes to remove?I had 22 removed (none of them positive!!). Is that excessively high? Does that indicate something which my (excessively non-talkatie) surgeon didn't tell me? Also, is it the lymph node removal, or an occurance of lymphodema which requires the need of a sleeve?

so many questions...

chantry

 

Posted 8/11/2005 1:26 AM (GMT 0)

During the surgery, they remove tissue as well as the tumor and then count the nodes in the tissue. Everyone has  a different number of nodes in the tissue the surgeon removes. 

Lymphedema can come from the surgery, for no apparent reason, or it can come later. This is why I never have "sticks" or blood pressure in my affected arm. Some people believe those things can cause lymphadema. According to my rad onc your chances for lymphadema go up with radiation. She made no distinction between sentinel node procedure, which I had, and the old style excision. The sleeve is used to prevent lymphadema in those patients who are in a high risk category. Again, ask your oncologist, most especially your radiation oncologist, regarding your need.

JUJU

Posted 8/11/2005 3:36 PM (GMT 0)
Hmmm I find the statement about radiation and lymphedema interesting. I have never worried about having lymphedema, the only thing I have been careful about is not having BP taken nor having any needles in that arm. I have never had a problem. My daughter is really bad about using her am and has never had problems. Neither of us had radiation. Jo-Ann had no lymphedema after her first mastectomy where all nodes were removed, but had it in the arm where only a few nodes were removed. I am wondering of those who have the problem how many did not have radiation? I have flown many times since my surgery without a sleeve, too. So I wonder why so many doctors make statements about needing a sleeve to fly. Anyone one else have any ideas on this? Hugs MK
Posted 8/12/2005 11:18 PM (GMT 0)
That IS interesting!

And it makes me wonder if I should fly to see my kids before radiation treatment begins?

I would like to know what else can be done to prevent lymphedema besides what has been mentioned. Does anyone know?

Thanks,

Beth
Posted 8/13/2005 4:19 PM (GMT 0)
No heavy lifting with the arm. No hot tubs. No BP or any kind of needle stick, ei no blood tests, IVs, etc. If you get a wound on that arm be very careful about cleaning it and making sure it heals properly and as quickly as possible. If there is any change in the size of your arm that could indicate lymphedema, go right away and see a specialist. Waiting causes the arm to get more and more swollen and the lymph fluids can harden making it very difficult to get your arm back to normal size. OK that is all I can think of, I am sure some others can add more who have had experience with it.
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