Add me to LYMPHEDEMA list

[StephN]

You all know how we sometimes tend to ignore little things and think they are probably nothing and will go away. Well that was how I was treating the puffiness that had developed between the knuckles where my fingers meet my hand. I have it a little bit on each hand, but worse on the right (lumpectomy and lower axcilla excision side) and also in my fingers now. One other thing that I noticed was a little feeling of "fullness" in my upper right arm in the underside area.
Someone else here had mentioned that and it raised a red flag for me. There is still little difference in measurement from one arm to the other, but some.

So, I went for an evaluation for lymphedema with a very good local physical therapist. She felt that the duration and slight worsening was indicative of Stage 1 lymphedema. (Yeah - they "stage" it just like our cancer!)

She said this is a hard stage to treat as it is so light, but with the proper attention we may get it to go away completely. I now understand WHY it is important to catch early - as there are proteins in the lymph fluid that will build up and stick together forming fibroids that tend to block normal flow of the lymph from one area to another. Once this is the case, it becomes VERY hard to move the lymph and keep it from collecting again.

Looks like I will be getting a glove with fingers and also using some pressure pads for the knuckle area. Not sure about the upper arm and sleeve use yet.

So, more fun and games with the cancer long-term side effects. I just hope in my case this will get under control and can stay under control! I have been careful with my arm as far as no needle sticks, cuts, and blood pressure cuffs. But, I WAS doing a lot of raking 3 Sundays ago and after that is when I noticed the pressure in my upper arm. The therapist said that some activities are GOOD for this problem and some are not.

More soon!

[Sheila]

Steph
That is something I worry about too...my Dr. told me never to lift anything heavy with that arm...especially if the arm is hanging down carrying the weight, even like a gallon of milk, detergent etc....I try to be careful, but sometimes we just do it and then hope we haven't caused a problem...I have heard of more and more women getting lymphadema 5 years or more into the BC diagnosis....maybe it is a cumulative effect of what we do...you were wise to get treatment right away, hopefully you can avoid any complications....I was told to wear a sleeve even when I fly due to the pressure changes...so I got measured and wear one if I travel.

As you know I was already on the list. I am getting a new glove and will be wearing a sleeve while flying to Texas next month. I always wear a sleeve when traveling and even riding in a car for long distances. I am working on that with my lymphedema specialist. I have been back in lymphedema treatment now for almost two months. Going 3 and 4 times a week then 2 and then once a week. Its a long drag but takes a while to get that fluid moving. Mine is mostly chest wall and so makes me look 6 months pregnant. Rebounding has helped me. It seems its always something with us. hugs, Sandy

[Quiltlady]

I was diagnosed with early lymphedema. It is not so bad once you get it under control. Wearing the sleeve and glove gives me courage to do things that otherwise I might be worried about. I'm glad to have it instead of always trying to be so careful. Not that I'm not careful now...but when I want to do something vigorous I wear the "stuff". I don't have to wear it all the time but I do wear it on plane trips and on car trips over 2 hrs. If you get it under control, and keep it under control, you don't have to wear the sleeve and glove all the time!!! The big thing is infection so guard carefully against that...I carry antibiotic ointment with me but other than that, I'm pretty much normal now....just pace myself when I'm doing stuff that could cause a flair...like washing windows...arghhhhhhh! Good luck!

[kristen]

Hi Steph,

I am so sorry to hear about this. I know when I went in for P/T after my mastectomy and they were educating me about lymphodemia, they told me that if caught early there was an antibiotic regimen they could use to stop it. Is it too late for that? I could go back and look through all my material, but I do remember something about high doses and that the onc. agreed with the P/T and to not delay in getting it?

Just a suggestion, you know me and chemo brain, but I am pretty sure about this one.
Update on Wendy. She has finished her rads and is feeling supurb. Thank you for all your help and encouragement. She is going in to the many doctors in the next 2 weeks to see where she stands, but when I talked to her on Friday, she was on top of the world. She is very positive that all is stopped in it's tracks or gone. I will let you know when I hear. Take Care Steph. Ps. How was the Anniversary party for your folks?

[Kim in CA]

Steph,

I'm so sorry you are facing yet another challenge. Thank goodness you have caught it early, and thank you for bringing this subject up. I tend to be a little reckless sometimes and do some of the things that the other ladies have said you should never do. I knew you shouldn't take your BP on that arm, or get injections, IVs etc., but I never was told about not lifting heavy things. You wouldn't believe how much weight I lift with that arm sometimes! I stack large bales of hay and carry very heavy water buckets, and get far too many cuts and scrapes. Oh my gosh, I guess the good Lord really does watch out for fools!

I'm going to be much more careful. Love Kim

P.S. please do keep us posted on your progress.

[StephN]

Hi ladies -
I had my second visit with my physical therapist today. She noted a little improvement in my right hand area since I started doing the lymph movement exercises a few days ago.

The plan is to work at it a little longer and see if I will get the fluid to go down more without use of the glove, etc. for the time being. This does not mean that I am not getting fitted for the glove and checking that the sleeve I have now is the proper fit. I will do that next week sometime.

It is hard to live normally and NOT abuse the arm a least a little bit! We need to carry groceries, do laundry, drive some distances, iron, vacuum.... Some of this can be hired out, but just impossible to not use our arms and hands.

Kristin - I am so glad your friend Wendy is doing better and getting through her treatment. Looking from the outside in is always more frightening than from the inside to the light at the end of the tunnel. Give her my best wishes, OK?

[AlaskaAngel]

Steph, I am SO glad you have the "sixth sense" to pay attention that keeps you dodging the pitfalls. The farther out we get the easier it is to sometimes want to "let go" of the anxiety altogether by ignoring the warning signs. I admire your common-sense approach to tackling the challenges, and I just wish you were my oncologist....! I'm also very happy you will be in Texas as that same practical focus you have is so good at finding the scattered pieces of the puzzle and putting them together. Hope the trip will be easy on you....

Hugs,

AlaskaAngel

[Esther]

Thanks for posting this Steph. I had not understood how Lymphedema works, but I will now be very diligent about watching out for initial signs.

Hope you caught yours early and the treatment banishes the lymphedema into oblivion!!!

[Patty H]

Steph
I agree with Thanks for posting this. I thought because I was 5 years out, that this wasn't a concern for me. I have completely gone away from the things they told me and since it is my right arm I use it just as I always did. But I am now having radiaiton for the 4th time and even though it hasn't been exactly in the same place each time I realize I need to be aware of what's happening. I do feel a fullness in my arm but when I look I don't see any swelling. I don't know if this is something I should mention to my radiaiton Dr. or to who if anyone. What kind of exercises do they have you doing? Patty H

[StephN]

I am only doing the light massage to open up the lymph collection areas, and some special breathing to move the lymph along. The therapist also does a more complete massage to help open all my lymph pathways.
The lymph networks sit just under the skin and on top of the muscles. So deep massage is not necessary to move the fluids. This is a very important, but little known system of our body. It is our lymphatics that work with our immune system to clean out anything what can make us sick or infected. A clogged lymphatics system is like vacuuming with a full bag in the canister.

Tomorrow I have an appt with a lady who fits the glove and will check my sleeve for proper fit.

As to the feeling of "fullness" in the upper arm - my therapist told me that we will begin to FEEL something happening even before it is really measurable or felt by the therapist. So they depend on us to clue them in on where the fluid may be forming.

Glad my condition is able to raise some consciousness among you ladies. I, too, am 5 years out and thought I was getting off scot-free on this side effect. Yeah, right!

[panicked911]

for allof us newbeeies out here - can someone explain who is at risk for lymphdema - I have had conflicting opinions from three oncologists and oncological nurses. I had three lymphnodes taken out and all were nagative.
Is there practical advice for preventing it in the first place

thanks