GRRRRRRRRR I HATE LE..........
Comments
-
Welcome and a big AMEN to you Linda. Maybe Jeannie and I could use what you're looking to give away, lol.
I've donated old wigs, scarves and such to the local cancer society chapter. Some of the hospitals will also take those kinds of donations. I agree that just sticking the thing in the washing machine and being grateful you haven't had to lay out $100 to buy the thing is all it takes. Got anything for the legs? I'd be willing to make a donation just to have those! By the way, if you make a donation to these places, most are non-profits. You can use it as a charitable donation on your income taxes.
Join us for a screamfest any time. All are welcome and bring a friend!
Sue
0 -
The place where I get my garments took like new ones. Be very thankful that you don't have to wear custom ones. I wasted $238 on my last one that I can't wear because it makes my elbow swell. So I am currently wearing nothing. The custom ones seem to hold up about 4 months for me. My insurance only covers them after a special $2500 DMV deductible so I am wearing nothing on my legs anymore either. I just don't have $800 every 4-6 months to spend on them.
scream away!
Milehigh...I started with a 10cm tumor. I did chemo first, then surgery where the tumor ended up at 5cm with scatted live cancer cells, then radiation. My LE flaired after radiation during PT for a torn rotator cuff. I agree it felt like a very heavy limb and a little achy.
0 -
Kitty, I emailed my PT. She has this stuff that comes in a roll and is nice and inexpensive. Here's her reply:
It is called tubi-grip, or tubular elastic support bandage. They come in different sizes of course.. the most common size for arms is size F, unless the arm is realy large. And the most common size for legs is, G or H.. but of course it is dependent on just how big or small the extremity is.
You can Google tubi-grip and find it. Cut it to size and off you go. She gives me tons of stuff. Maybe everyone can ask their PT's if they have the stuff and could they cut off some samples (like 10 or so, lol). It's a thought for those of us that can't afford the real thing.
Sue
0 -
Here is a link to a thread discussiong tubigrip. http://community.breastcancer.org/forum/64/topic/788452?page=1#post_3052028
(Kitty, I'm so sorry you're having such a difficult time.)
0 -
Sue, I'm just catching up with this GRRRRR thread and am so sorry to read about everything you've been going through. By way of encouragement, radiation itself can cause swelling, but that swelling won't be permanent. It can take a month or two to dissipate. Be watchful, though, for any signs of cellulitis. Here's information about what to be on the lookout for:
http://www.stepup-speakout.org/Emergencies_and_Med…Has your therapist been able to teach you some self-MLD? It's soothing and really helps with reducing swelling too.
And I wondered if you'd checked out BrightLifeDirect.com for leg garments? Theirs are quite reasonable. I like the Allegro, all cotton and quite comfortable, but they have lots of brands to choose from. They're excellent about returning items that don't work for you, too--they of course do not resell them, but launder them and give them to organizations that can distribute them. If you're not sure what to order, call them up and they'll help you decide.
Chocolate helps too, y'know? Ranting and chocolate--terrific combination! Gentle hugs,
Binney0 -
Do you all have your swelling down to where your arm/hand looks like your other one? Mine isn't that way, yet. I'm STILL waiting for my custom gloves and hope those help but my neighbor the other day said she couldn't see a difference in my arms at all. I have most noticeable swelling in my hand/fingers.
I do exercises and manual drainage every morning and night (sometimes during the day) and I also have a compression pump I use every night. I do wonder if it will ever look like my other hand??
0 -
mcgis, my swelling has never gone away. In fact, it is about the same as when it started last May. I have given up trying because all the bandaging, MLD, Flexitouch, garments - maybe it has kept it from getting worse, but it has not gotten better. I have custom garments that still don't work well. Most of the swelling is now in the forearm at the elbow, but if I am not careful, the hand swells easily. What I HAVE noticed is that the heavy aching is not as bad as when it first occurred. But I also just don't do much with my arm - I no longer garden, do much cooking that requires chopping of vegetables, housework. I think much of the reason mine has not improved despite my rigorous compliance is that I still have tumor in the axilla and chest wall, so overall, I think I am doing pretty well, all things considering.
Here is a way that I was finally able to get my head around the idea that this is a permanent condition, and that it can get better or worse, depending on how you treat it. The lymph vessels get stretched out with the initial flare, and they are like varicose veins - they are never ever going to be "normal" again. For some, they don't get much worse, for others, it progresses. The main thing is that you wear compression garments to keep things from swelling more, and if you don't wear them for a bit, you may be able to get by with it, you may have more swelling, but then it CAN be treated by going back to bandages and aggressive MLD etc IF you don't push it past that point of no return. So I now understand that I can "live my life" and do things like go without my sleeve and even wear my ring for a short time, like going out to dinner. I have found the swelling that happens with that couple of hours can be managed and I have a few hours of freedom and enjoyment. I still don't like it and am dreading summer gardening and beach, but am managing. Much of this attitude has been from all the help here on these threads and a lymphologist I just saw last week.
Best to all of you.
0 -
Thanks so much for the info binney. It's very encouraging to know about the radiation causing swelling. My other leg is starting to swell and I can't get in to see the PT until the 26th which is her first opening. I'm getting nervous that my swelling all seems to be coming at once. I'm chalking it up to the rads. I've also had more shortness of breath tonight. Wouldn't you know it. After I gave my doc a hard time about having my lung drained from the pleural effusion when my oxygen count was above normal today. Grrrr. I'll also chalk this up to the rads. Oh I pray I get through the weekend!!! Sue
0 -
Tubi-grip does not provide gradient compression like our sleeves do. The sleeves have more compression at the wrist, gradually lessening to the top of the sleeve, and this gradient compression does a lot to move the lymph up and out of the arm. I put on some tubi-grip once, just to see what it felt like, and it was such light compression that I can't imagine it would do much good.0 -
So true Carol. However, my PT put two together way back when when I was waiting for the sleeve I ordered. I actually like using that better than my sleeve! It's just an idea to give people an option who can't afford other options. I'm one of those people
Sue
0 -
Sue, it's mortifying that garments aren't properly covered by insurance. Have you investigated garment funds that might be available to you? A couple of years ago I did some searching and was surprised to find quite a few options around the country. My list is out of date and I haven't looked into it for a long while, but I do remember that there were many programs funded by local Susan G. Komen chapters. You might call your local Komen group and ask if they're funding any lymphedema garment needs through clinics or hospitals. There's not enough help like this, so it's a long shot for anyone who could use some help with garments.
0 -
Great ideas Carol - thank you! We'll have to check them out!
Question for the group. I was reading one of these threads wherein someone was talking about not wearing their compression garments at night. Just during the day. My legs have been really swollen badly the last few days so I was wondering if I should give the legs a rest at bedtime and re-wrap in the morning. Any thoughts on the subject? Sue
0 -
Sue, I wonder if the person who wrote that was referring to not wearing compression sleeves or stockings during the day. The daytime garments are not meant to be worn at night, because they need our muscles to be active to push against the compression, and there's some risk of a garment wrinkling or folding over at the cuff, causing a tourniquet effect we might sleep through. I do know that some people have success wrapping at night or wearing one of the night garments, and it works so well for them that the daytime sleeves are not always needed. But perhaps others have had the reverse experience, using compression mostly during the day and taking the nights off.
0 -
I had a PT that used the Tubi-grip but she used it on top of all the wraps. He really helped the leg stuff stay up. She said it wasn't enough compression to worry over.
0 -
I successfully wear garments during the day, none at night. I feel fortunate, believe me.
0 -
Well all, I'm having yet another thorocentisis tomorrow. I'll be glad when it's over and wondering if it might also help the leg swelling. The legs have been really swollen today, despite my having them wrapped and elevated most of the afternoon. Still have some calf pain and hoping that will go away. Had a bit of nausea the last two days so I'm hoping I'm not coming down with something. It hasn't been quite a week since I had the last radiation treatment so keeping the fingers crossed that the rads are what's causing all of this.
Carol, I did the Lebed exercises this morning. I like them - wish she had more for the legs but they were pretty simple to do. Thanks for the research. I did find another gal that has some good exercises. Called MassageByHeather.com. She's quite good and worth a look.
Sue
0 -
milehighgirl, I'm glad you like the Lebed exercises. I'll look at the Heather exercises when I have a few minutes.
0 -
Milehigh. Hang in there, keep trying the lebeds to.
0 -
mlehighgirl, There are a lot of Ledbed exercises on You tube that are not on the DVD. Just go to YouTube and look up Sheri Ledbed.0 -
Hello ladies. I've been MIA for a few days. Ended up in the hospital with a blood clot in the swollen leg. No wonder! I'm now on yet another drug for the blood thinning. I'm going to have to give myself shots for the next 30 days
. Not thrilled about that. I did ask the doctor about what would speed up the process. Mostly what I'm already doing. Exercising, elevating legs and so on. Also I'll be able to work but he did say I'd likely be pretty sore afterwards since I'm on my feet and not really moving around that much. GuyGirl, I did download all of he Ledbed exercises from you tube that I could find. I then marked them in order from 1 on so I could find them easily in my favorites folder. They're pretty easy. I do have to go back and see if she's got any leg exercises. I see the PT on the 26th and we'll have a lot to talk about. The doc said massage was okay but to stay away from the vein that has the blood clot (that runs the length of the vein!).
Grrrrrr....I hate this, lol. Blessings all. Sue
0 -
Milehigh, How is the clot and your general wellbeing?
I just wanted all to know that I still hate LE more than 10,0000 dead fish in a locker. Anyone else?
0 -
Hi Hugz. I've still got about 10- days to go on the blood thinning shots. I see the doctor on Friday before chemo and I'm sure she'll schedule an ultrasound of the leg to see if the clot is completely gone. I also had a thorocentesis (lung drain) last week, the second one in as many weeks. Haven't been on this new chemo long enough for it to dry up the lung like the last chemo I had. I am so with you on hating this LE. My leg is good and swollen most of the time. I do the manual massage several times a day but it's a chore. Friday I get my new pump and I can't wait. Let the machine do the work.
I hate this too! Sue
0 -
Yes, I still hate LE!!!!!!!!!!!!!!!!!!!!!!!!!
But right now, I have it under reasonable control, so I am at least grateful for that. I think finally getting a garment that fits and works has made a huge difference, and it took nearly a year to find the right one. Ugh. 0 -
Me too - wish I could find something for the torso, as most of my problem is in my "Nerve Pained" Breast.
0 -
Was it this thread in which someone said their LE got worse when they had radiation? I'm convinced mine has too. If it was this thread, how long before the swelling went down or away? My pump comes tomorrow! Yeah! Can't wait! Sue
0 -
I got the lebed videos last year but haven't used them much, but now my arm is swelling a little more and they are saying I needed to get a sleeve as well as the gauntlet, I am trying to do one every other day and I printed out directions of the exercises to hang on my bulletin board at work to do them a couple of times a day at work to open the channels. Since I am in an office by myself, I can get by with it some and they are promoting wellness across the company.
That being said, I just got my first sleeve today and have been wearing it since 5:30 this evening. we will see if it makes a difference, and will see how well I can work with it.
Sheila
0 -
Sheila, It takes time to get used to - I find my upper arms ache if I don't wear my sleeves and gauntlet now. Take it slow including the lebed. Work up to the 15 minutes. I learned the hard way and now I am still suffering for it. Baby steps.
0 -
milehighgirl - first time posting in this thread, but I did get Lymphedema from radiation. I had gone into radiation with mastitis and the first day of radiation, I developed Acute Lymphedema (and Acute radiation toxicity). My doctors were at a loss what to do. My surgeon basically told me to "live with it". At that point, I went home and basically became hysterical. My Mother went with me back to the doctor and she "fired" him in front of all the patients in the waiting room.
We got a second opinion, which gave me the above diagnosis. His recommendation was to stop radiation. At that point, I had 2 surgeons and the radiation oncologist fighting about the treatment. I finally told them that I was stopping radiation for a long weekend, I researched and developed my own compression system for the breast (sports bras layered with shelf bra camisoles). After 4 days, the swelling came down enough to continue radiation.
After 8 years, the swelling in the breast had minimized and stabilized, with very little swelling. I just had a BMX and the area around the scar is hard - Lymphedema again. My surgeon believes that this will soften & go away. Unfortunately, about a year after my original surgery, I developed LE in the arm - and I still deal with that. I did therapy 7 years ago for the arm.
I am now going to a therapist that the hospital hired to do therapy for the arm and the chest because of the BMX. I do not want anything to get worse, especially since everything was stable!
0 -
I need help! I went through chemo and had a bilateral mastectomy in Feb 2013 and had 5 lymphnodes removed. In Sept/Oct 2013 I had a recurrence and had a lumpectomy, radiation and an going through chemo again. I hadn't had any problems with lymphedema until March 2014 (one month post radiation, and it's been for about a month now). My oncologist referred me to a lymphedema therapist who measured me and ordered a sleeve. I've had the sleeve for a week now and from what I can tell it's making things worse! As soon as I put it on my wrist and top of my hand swells up and hurts so bad. I went back to the therapist and she is ordering me a glove.
What do I do? I am not fully convinced this is lymphedema! (Wishful thinking???) I've been sitting here crying for the past 30 minutes because of the pain and I have only cried about 3 times through all of my treatment so I'm really not a cryer. Any suggestions or words of wisdom?
Lymphedema sucks! I've been ok with having breast cancer, even twice, but to have to deal with a fat wrist and fingers that hurt??? UGH .
0 -
Love to travel, thanks for the insight. I'm convinced it's the radiation that triggered the lymphedema and swelling getting worse. Just wondering how long before I notice changes for the better. Will it go away?
Kkemp, welcome to the I hate LE club. I'm pretty early in the lymphedema side effects so maybe the other ladies can give you some insights. From what I've seen, it can come on quickly like yours or gradually over time. Mine flared when I had radiation and I'm hoping it goes down or away as I get further out. I think your best bet is to continue with the PT to work on exercises and things that will minimize the pain and swelling. The name of this thread is appropriate because we all hate it. Hang in there. You'll get through this too. Sue
0
