Anyone else?

Rats... I somehow lost my reply to you. It may show up somewhere else on the threads, not sure.

I will start over. You can get LE from radiation so this is my guess is what happened. It is not uncommon. Your doctors are uninformed as many other mecical staff are to. 

Don't despair we are here to help you lift your spirits and have a better life with this condition.You won't have the "only lonely one" feelings here, if you stick with us.

Google:  stepup-speakout.org  where some girls here created a great site to educate people on lymphedema (LE) You will learn just about everything there and then ask us questions on the threads here too. You are very welcome here.

Once you become a educated in LE yourself you will no doubt be telling us what they do in Europe for LE as I think the LE treatment was developed over there first. You have some excellent clinics over there.

You need care of your Lymphedema as soon as possible by going to a Lymphedema specialist to have your lymph system drained in your whole effected quadrant. That would be breast, chest, trunk, arm and hand. I am not sure what they call that kind of a therapist in France. They must be certified and not just a person that took a weekend course on lymphatic drainage. Some clinics have staff that is not well trained so ask for creditials. Ask if they will be measuring your arm. That way you can see if it is progressing or regressing with treatment. If caught early you can reverse it or make it so much better.

Still if you are having symptoms your LE specialist may recommend sleeves and a glove or gauntlet. You should wear a glove or gauntlet so you don't push Lymph into your hand. A good therapist will guide you and judge your situation. Depending how swollen your arm is will determine if your LE therapist will wrap your arm in special bandages and hand for about three weeks daily to get the swellling down. If you feel you distrust your therapist let us know what she is doing and saying and we will qualify what she is doing.

Hopefully our experts will come on soon here and maybe let you know who does this in France. It's the weekend so the threads slow down a bit.

You should get rid of the bra and see if your trunk feels better.It probably feels better in the morn than at night when the fluid has collected for the day.  Usually a bra cuts off your lymph circulation and causes swelling. Order a UNDERAMOUR compression mens tee shirt in a size smaller than you are and wear it under your clothes with no bra. I think they ship worldwide. Google: Underarmour . It will hold you in and my pain goes when I do this. You can wear a tight shaper in the day or sleeping also instead but if you have a full feeling in the back of your arm then a mens compression tee will take care of that.

We are here for you. Ask anything. You haven't given us much info on weather you have had treatment for LE or not so I have given you a mini lesson on general LE eduation.  Let us know more about your condition, feelings, soreness, swelling etc so we know what stage you are at. Well help you keep on top of it.

With the warm weather, drink tons of water for your lymph system to flush and do not get a sunburn or overheated.  Elevate you arm above your head and fist pump 25 times... maybe 3 times a day. Don't lift heavy stuff that you are not use to lifting. Rest your arm on the back of a couch when it gets tired or when sleeping elevate it with a pillow. take deep belly breaths throughout the day. Search for my thread called tai chi breather exercises, Only takes a total of 5 mins a day.

For now and the future, If you have any redness, flulike symptoms on your effected side and the redness is spreading fast then go to the hospital and mention that you may have cellulitis. It is dangerous but ok if you catch it right away. Not to scare you but just to educate you. That website I gave you will give you more info.

You are in good hands here. Of course I always reserve a hugz4u and a kiss of compassion to our new folks here. Your education is the first step to recovery.

Thanks for posting the link Marple. You saved me again!

Nicky, hello!

I too was surprised to see the diuretic use and I wondered, if your therapist has not used bandaging or compression garments, what his/her treatment consists of? Therapists are rare in many areas, and sometimes they're so overwhelmed with a heavy patient load that they can't do all the treatment that's needed. I hope you'll be able to find someone thorough and really helpful! I know Bordeaux is a long way from Paris, but perhaps if you called the clinic there they'd be able to steer you to resources closer to home for you.

One possible cause of LE that hasn't been mentioned here is that lymph blockage can be caused by mets. It's not uncommon, and several women who post on the Stage IV board have dealt with it. In some cases the swelling can't be readily reduced, but even then some support from wrapping or compression garments helps to ease any pain or discomfort. Many women use foam-filled night garments for that purpose because the softer form of compression is even more comfortable, in spite of being bulky. Leg swelling and discomfort may also be made worse when you've been treated with Taxol, which can cause both swelling and painful neuropathy. It's important for a LE therapist to take the time to assess the causes so she/he can treat it in the most appropriate way.

So glad you've found us here, and hope you'll find the companionship of our "swell" sorority a boost! Do let us know what you discover!
Gentle hugs,
Binney

Oh, and Marple, it's daunting to have LE with any other condition, including having to manage high BP.  What a balancing act. 

Binney, you are of course correct that the Cognacq-Jay hospital networks with other LE clinics in France, so hopefully Nicky will find some resources easily enough.

 I was dx in July 2012. No surgery, no nodes affected. Had weekly taxol and herceptin until last month, now in tamoxifen and herceptin every

Nicky

You might want to try to p.m ( private message )  Victoria38.  Actually, if I recall, I believe hers has been attributed to chemo.

I know that she did not have surgery, and has LE.  Your situations are sure to be different, as we all are, but perhaps the two of you could chat. It might be of some comfort to both of you- I'm not sure.

I can't offer anything beyond what these wonderful ladies have except to wish you well.

Take Care!

*EDITED TO ADD:
I recently spoke with a woman locally whose tx consists of Ace bandaging and water pills (NOT good/ neither)  NOTHING I could say could make her believe me.  We do need to be 'careful' of some of the medical personell and educate ourselves.  It's the last insult LE slaps on us , unfortunately. (you came to the right place)

NickiJ - there are so many women here on these boards who know so much about LE.

My Lymphedema Specialist is amazing.  She said she has seen many women who have gotten LE frombreast surgery alone - no nodes involved, not even a node biopsy.  She has seen them get it from chemo.  She has seen them get it from Radiation.  She has been doing this for over 20 years way before it became popular.   She has treated ALOT of patients and is so well informed. 

I have a BC Blog.  I hear from women all over the world.  So many of them get totally wrong information about Lymphedema.  Their medical professionals do not have a clue.  It is very sad.  Many times they totally go untreated.  

Horray for Dr. Google and your sense of adventure to looking in to LE. Good thing you bumped into us.

I can't wait to hear from you of what treatment they do overseas. I know that Dr Vodder method was created in Europe and that is the method that is used on me.  Google the Wittlinger clinic. I bet I am spelling that wrong, they do Vodder method if you want to know some of the similar techniques that may be used on you. Make sure they are certified and have the required training.

I am just so excited that you didn't give up making things worse in the end. Good for you for stickin with us.NOW YOU GO GIRL! Yeah!

That is kind of amazing. I do wonder about this: Cures bras et jambes produisant un drainage par jets d’eau thermale de toute la chaine ganglionnaire. My translation (which could be less than perfect): Arm and leg treatments that drain lymph using thermal water jets all along the lymphatic pathway. 

Aren't we reluctant to hop into hot tubs?  Perhaps the water temperature at the spa is not so hot.  (Too bad I cannot go there myself to check the temperature...)

I will try to wade through the French.  Even though I am Canadian I am far from bilingual.  Geez, I want this place to be wonderful!