radiation causing lymphedema

candlegranny · 03-10-2011, 09:22 PM

When i started radiation in August 2010 the radiologist sent me to a lymphedema therapist. I had no problems to speak of until the radiation.
Now i have what my therapist calls stage 2 lymphedema and she tells me I will most likely never go away. I will have to do the manual lymph drainage and wear the compression sleeves here on out. I cannot straighten my arm up over my head unless I raise it up with my right hand. she told me it was time to get my wedding rings resized and made bigger to fit my fingers.

I am jsut wondering if anyone else has gotten lymphedema coming on from radiation. How do you deal with the lymphedema in summer time, while swimming or going to an amusement park.. we have 2 granddaughters we are raising aged 7 and 12 and a pool in the back yard and season passes to an amuesement park. couldnt do much last year caue of treatments and being weak and fatigued was looking so forward to this summer being close to normal. Any suggestions or guidance on this lymphedema stuff?
I lost 31 nodes so i guess i was prone to get this anyway but thought i was dong good last year... until radiation started.
But with all this being said I am so glad that lymphedema is all i have to deal with right now!

Estelle · 03-10-2011, 10:53 PM

My lymphedema started with a bee sting -- all was going well until that point. Radiation can further damage the nodes, so it can be a tigger point for lymphedema. I have sleeves and a night garment. I am good about the night garment but have been in denial about using the sleeves -- however I recently started wearing them. I think it finally dawned on me that I was going to live, and I did not want out of control lymphedema. There are several brands, and several weights. I have some that are stronger, and some that are more lightweight. After a while, you will be a feel for when you "need" extra compression. I use my lightweight garment and night sleeve, but heavy up if I feel I am swelling. There is also a lot of useful information at www.lymphnet.org. I hope this helps.

laureen · 03-11-2011, 07:13 AM

I got my lymhedema about a month after surgery and it then got worse after radiation. I have tried numerous different products. Even considered an experimental surgery to replace nodes. (Too costly and not showing great results yet.) As far as swimming. I wear a sleeve to swim in too. I even wore a glove and sleeve in the ocean. I have not had success with the lymphapress, or reid sleeve. My lymphedema has seemed to stay the same for about year and a half now, but I am protective. A little hangnail or curling iron burn has caused pain. I do not wear a watch or rings on that arm or hand.

angied808 · 03-14-2011, 04:50 PM

Swimming is actually really good for lymphedema. There are specific exercises you can do it the pool (I think it's Tidhar method, if you look it up). You don't have to wear a sleeve in the water.

Jackie07 · 03-17-2011, 05:54 PM

I have had 3+8 = 11 nodes out. Everything was fine until I got some tiny bug bites on my right fingers and caused cellulitis. When the redness extended to the elbow area, hubby talked to the oncology nurse and I was hooked to IV for antibiotics right away. The the physical therapist taught me how to massage and fitted me for the compression glove and sleeve.

That was 3 1/2 years ago. I just received a new set of custom-made sleeve and glove a couple of months ago.

Mayo Clinic has a nice link to the lymphedema management:

http://www.mayoclinic.com/health/lym...etedNewsletter

It also mentioned about the National Lymphedema Network link
http://www.lymphnet.org/

There was a thread on the topic not too long ago:
http://her2support.org/vbulletin/sho...ght=lymphedema