GRRRRRRRRR I HATE LE..........
Comments
-
Tina, I guess some people just don't get it....................when you see someone bandaged from their fingertips to their armpit, you know the story can't be a pretty one, so keep your "pie hole" closed..............right.............
Trust me, I have experienced the worst of people..................plus what good are explanations, most have no idea what LE is anyway, and I don't get paid to "teach"................hugs
0 -
Ducky, I can feel your frustration. The way you write about your deli experience though, it sounds hilarious. I read your post to DH and was laughing so hard I could hardly finish. You say to people what I'm wanting to. I live vicariously through your comments to people's unwanted questioning. I think the next time I'm asked I will probably simply pee myself laughing because I'll be thinking of your reply.
0 -
Ohio--I know you probably feel at peace knowing you have made that decision of what to do.
Ducky--I don't know what to say to your post! So funny. I guess because I am an educator that I have to stop and educate the person who asks. I thought about a little card saying I have LE and what it is. Wonder how many would actually read it after I leave it in their hand?
Carol--I am in bear country and very few attacks. So you should be okay. Plus usually when one is attacked they are alone. You will be with someone--right???
GmaFoley--I was probably sleeping while your kids arrived. I hope you made it through the rest of your day!
My nephew with Cystic Fibrosis often has his arm bandaged over pic line when being treated. He does get tired of people asking about it. I shared a lot of your comments to him and he loved them. Now I will tell him to add bear attack!
0 -
Nibbana and KS, good bear hints, so thank you. There will be four of us-my DH and 3 women (oh, and Remy the poodle, who loves to freeload ride in the front seat of our double kayak). The toothpaste thought is one that would not have occurred to me. KS, I ordered the Allegro sleeve/gauntlet combo, but it has not arrived yet, so I have my fingers crossed I'll see it before next weekend. I also bought one of their gauntlets - very inexpensive - to see how it compares to my pricey Jobst. Quite similar, just runs up the arm a little bit higher. So I do have to consider compression-on-compression, but I'm able to adjust the Jobst sleeve so that the overlap on Allegro gauntlet is similar to when I wear the Jobst combo. I'll be happy if the Allegro sleeve/gauntlet-in-one fits well, in case I need to change out my compression several times in a day, to avoid wearing it wet for hours on end.
0 -
Oh, and Nibbana, when I re-read your post, I saw that I had initally read too fast--hazard of reading late at night!
Ohio: congratulations! The relief from making a hard decision is a wonderful feeling. Do keep us posted on that surgery date. We'll fill your hospital room with buckets of virtual brownies.
0 -
Update on last night - Kids got here at midnight and was told they are taking me to the wild life park in Bandon, OR on the coast - its a 2 hour drive with my grandaughter, daddy, stepmommy, and their friend... He has a fit and says the girls will all fit in back LOL the other two are skinny as a rail... Gives me more room LOL....I suspect I should wear my sleeve because of the traveling, being I had swell issues this week??? I am going to get my new gauntlet this morning before we go. My boss (my son) told me to make up the computer work hours later and go with him he would pay for everything
.. He is making sure his daughter and I has a wonderful time - he only gets her for 3 or 4 weeks during the summer... 0 -
Ducky, when I took the Klose CLT course (yeah, I'm a LE therapist now...) I learned about the two pieces of gray foam to use on arms and legs. Personally, I roll a thinner roll of rosidal soft up my arm, but the gray foam works better, supposedly.
It's not easy to cut the foam pieces out--they gave us templates and we had to customize them to fit each other. I completely understand how bulky it is, and how it feels like it adds another layer of complexity to the wrap.
We were told, at the end of the course, if you run into problems, contact us---but don't contact us if you haven't tried gray foam yet!
Kira
0 -
I go to Summa Barberton. Dr. Lee Anne Sprance is my BS. I love her and her staff. My PS is Dr. Gary Pennington. I really like him also. He fixed me up after some MX complications. IF I was going to proceed with reconstruction, Pennington would definitely be my only choice. Dr. Hazra is my MO - love her too. She is a BC survivor, I believe diagnosed at Stage IV many, many years ago.
I am in Hartville, where are you? There is an Ohio discussion group and there are three of us planning to meet for the first time next Tuesday for coffee at The Strip. Wanna join?
0 -
Has anyone had the experience of their breast LE going down or back to it's original size? I am getting so depressed :-(. I was only 3 months out from the end of my rads when my breast swelled to about one size larger then the other. Now I also have the underarm swelled some. My treatment was surgery, chemo and then rads. I went to my BS and RO right away when I saw the swelling. BS said it would go away on it's own, but my RO gave me a referral to an experienced PT. It's been 2 months now and after doing self MLD 3-5 times a day and having the PT do it twice a week, I haven't seen any change.
I've been wearing a compression tank (Assets) and using a swell spot, but haven't noticed a difference with these either. The PT told me I'm doing everything right and that with stage 1 breast LE it's hard to see much change. I've read that sometimes it will spontaneously subside. Help! Please someone... tell me that this won't be forever.
0 -
Rockym,
Since I started therapy again, my arm swelling has gone down a little, so I do have hope. I'm not sure it'll ever get back down to match my other arm but smaller is better. My rad breast was bigger after rads and now it is actually smaller too, so I guess I had swelling there that finally eased up some. Hang in there. It just may take a little more time to see some good results.
0 -
If I were a bear, an LE sleeve would not look very yummy to me.
0 -
Well that's one positive thing about a sleeve!
0 -
Lee, Thanks for the hope. How long did it take for your rads breast to go down? I'm not hearing anyone talk about the spontaneous reversal that I've read about. I suppose if their breasts went back to normal, they may not be on these boards anymore.
I spent all day yesterday and today trying to find a bra that would be comfortable, but also accommodate the larger breast. I really wanted an under-wire for shape and lift, but know that they are not good for LE. I believe I got lucky because I found a Maidenform bra that has the under-wire so padded that it does the job, but can't be felt. The bra makes my breasts look even without adding some padding to the smaller one so I feel a little better for now.
I know that others have been dealing with this longer, but I just came out of a bad depression and I'm trying really hard not to let this take me down.
0 -
Rockym,
I had to re-read your post on how far out you are from rads. About 5 months? I finished rads over a year ago now. (seems hard to believe) I don't know for sure when the breast swelling went done because it wasn't an overnight thing for me. I just noticed it gradually got smaller. Of course my other breast got smaller too, and that I think is the Arimidex at work.
I had a tough time finding a bra that would work. I finally gave up and settled on spandex camisole type tops that have a little padding in the bra area. They were the most comfortable and they seemed to fit best and even me out. I still have my old bras, I don't know why. It's probably about time I cleaned out that drawer.
Glad you found a good one that works!!
0 -
Kira........my foam is gray...........
0 -
Do you remember me saying I lost my gauntlets all three of them. Well I found the one I ordered when I had the hand surgery so I figure something was better than nothing. We got our new puppy two weeks ago and what did I find in her mouth yesterday...my good gauntlet. lol She came from under the recliner. That darn chair has been moved many times, swept under and looked under. I guess have a half pint puppy is a good thing.
I measured the other night and I am only up two inches in my leg. Thank you Lord for only that. We finally got AC Friday. I haven't gone back to sleeping in my night stuff completely yet but the house is at least cool again. Hope everybody is doing well.
0 -
Kitty - Puppies are nortorious in finding things and I am glad to find out you are cool again.. More hot days for us.
BTW ladies, Binney, Kira Question - if I was swollen into my mid-arm for the first time last week - should I be wearing the sleeve until the swelling goes down - I will probably call and ask if I don't hear from you but trust your judgement... I wore it for my trip this weekend with granddaughter and did well - son's car had air - thank God for that - and the coast was 10 degrees cooler than home..
Rockym, I haven't said anything because I am an unique case. but thought I would let you know both sides of the coin. I'm a year post rads - have been suffering from pain and swelling since mid rad - My docs here told me it would go away and there was no sign of LE into the arm - THEREFORE I don't have LE... Wrong, I finally put my foot down about a month ago and got a referral to a LE therapist - I have breat/truncal LE - When the therapist started moving the stagnant fluid in my breast - I got sicker than a dog for a couple of weeks, then things settled down and now am doing better... We both have noticed swelling in the mid arm the last week and are watching that.. It is really an individual thing and as far as my case goes - the LE therapist said you can "Manage" it but it won't totally go away.
0 -
Gma,
I don't think you are unique, and I don't mean that in any bad way. I think many women have a lot of swelling and pain that never does go away, their docs don't admit it, and I really don't know how they cope with it. I was in much more pain originally but after finding and going to a good LE therapist and being really good about doing MLD the best I can, I think....I have hope that I am doing better. So maybe given a little more time and more therapy we all can see some better results. I hope so.
I know LE is never going to 'go away', and I know I'm going to have to manage this forever. I just hope and pray I can stay on top of it. I'm hoping for some cooler weather too!!!
0 -
Thought you all would enjoy/roll your eyes at this - we had a big cookout over the weekend, and one of our friends brought a guest. I was talking with the guest, and she said she was a nurse in a ps office who specialized in breast recons for b/c patients, doing a lot of lat flaps. Of course I told her I'd had DIEP flap, etc. I then asked her point blank - do you talk to your patients about lymphedema? I said, I have arm and truncal LE. She said, oh, well, a lot of times they're seeing a PT who can talk to them about that - we really don't get into it very much. I said, you should. I told her that no one talked to me about LE - not the bs, the ps, not any of the nurses, etc. - the usual tale of woe. I was blunt and said the problem is that everyone assumes that everyone else is educating the patient about LE, and in the end no one does. And by the time the LE is dx two or three years later, chances are your office is no longer seeing the patients, so you have no idea about how many of your patients end up with LE. I think she was surprised about my depth of feeling on the issue! I may try to get some contact info from my friend so I can send her a packet of info on LE. Sometimes I just want to bang my head against the wall.
Nothing like haranguing a guest who's just there to eat a burger and have a beer - I'll never make the Perfect Hostess list, I guess!
0 -
Natsfan, good for you for saying something to her !!!
0 -
Lee - Yes, I agree we can only hope to manage this and feel better soon..
Natsfan - I've been doing the same with anyone of the medical profession... They have no clue..
Binney or Kira another question - I figured in the beginning, during my eval - my left arm (non dominate) was larger than the right.. I suggested being I have been dealing with the pain on the right for a year - and I use the left arm more - that was the reason it was larger, BUT I had a shoulder surgery where they took off spurs that were tearing the muscle and they also took the end of the clavicle to give it more room in the shoulder - Being that is so close to the lymph - could I have LE on the left side too - it just flared when we started moving the other fluid?
0 -
NatsFan - I met with my PS recently about LD and recon. He did not mention LE but we asked. He said he doesnt' get into that area (meaning nodes?) so should not be a risk. I think he probably discharges his patients before the LE is apparent and they treat elsewhere.
Decided no recon. Meet with BS tomorrow for prophylactic MX and call it done. Hoping left MX will not play into LE risk but....... time will tell.
0 -
Lee, I am 5 months out. I do hope I'm lucky enough for this swelling to go down. I saw the PT 2 times a week for 3 weeks and I also did the MLD many times a day, but haven't seen much of a change. This whole thing saddens me. I'm looking into getting a sleeve and gauntlet in case I have to fly. I figure I can at least protect my arm.
Gma, thanks for the reply. My PT closed her practice and there is only one other facility that works with lymphedema patients in my area. My PT told me the best I could do was to continue MLD myself and wear a sports bra or other type of compression tank. You'd think that cancer, chemo, rads and major depression was enough... nope. Well, I've had other things spontaneously heal in the past so here's hoping for a repeat. :-)
0 -
I'm looking at ordering a sleeve/gauntlet combo from Brightlife. They have an Allegro 20-30Hg for a very reasonable price and it has good reviews. Is it okay to have the combo rather than purchasing each separately if I only plan to use it for air travel? Seems like a one piece would be convenient.
Thanks for your opinions.
0 -
WooHoo! Are we allowed to post good things here?
Just got back from a visit from an LE therapist and it was fantabulous. I am one year post unilateral MX. I had seen an LE therapist (PT therapist) and never received a full LE drainage massage. I was shown how to do MLD and was wrapped but never the complete LE drainage. So - my therapist moved and I found a massage therapist. She has one more class to complete but knows her stuff.
There was a visible difference in my hand when I left the office. I am thrilled. She did confirm the next MX will come with LE risks on the other side but.......... MX is needed so I can't change that.
Just happy right now!
0 -
ohio4me !!
Happy dance!! It's always good to hear when things go well and improve.
Rockym, I have a Juzo dreamsleeve I like but its the only brand I've tried. I'm sure others with more experience here can give you some good advice on what to buy.
0 -
ohio4me - Great news - I actually can't wait to go weds. Been a little puffy in the arm.. And you can give us good news anytime - Its what keeps me going!
0 -
We absolutely LOVE good news. That is great that you are getting some relief. Any victory against LE makes me unbelievably happy!! Dancing naked right now haha
Maggie
0 -
Rockym, I am waiting for an Allegro sleeve/gauntlet combo to arrive; it is backordered. I asked the same question here a while back, and someone posted that she had been a test evaluator for the Allegro sleeve (not sleeve/gauntlet combo) and found it much too long. I sent Brightlife an email asking; they agree the combo is a bit long, but they have a very good return policy, so I decided to order one and see. I will soon be paddling for 5 days straight, all day, and wanted to find good compression inexpensively, in case I need several change-outs in a day. If the combo comes before I leave, I'll be sure to post an update here.
0 -
carol, thanks for the reply. I've been reading about that brand a bit today and have read the same thing about it being long. I'm rather petite so I have a feeling it may not work for me. There is a store here in AZ that sells a variety of sleeves, etc. so I may just check them out. At least I'll have an idea about sizing.0
