GRRRRRRRRR I HATE LE..........
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Stacey - I just don't know how to advise you. Im hoping others more knowledgeable than me will come in on this pretty soon as you sound like things are real horrible right now.. and I'm sorry you are going through this.
Im thinking though you need to get an LEist appointment and see what they say. Theres so many different protocols to go through depending on where we are from. My LE didn't come til after RT and my seroma didn't happen on my 1st Mx but 2nd.
In the meantime you might like to keep well hydrated. Someone should be along soon.
Gentle and warm HUGS0 -
Welcome, Stacy and Teresa
,Teresa, any doctor on your team can write a referral for an evaluation by a well trained lymphedema therapist. S/he can take baseline measurements for future reference, teach you some gentle exercises and massage that helps move lymph fluid, and give you personalized risk reduction tips. Here's how to find one near you:
http://www.stepup-speakout.org/Finding_a_Qualified_Lymphedema_Therapist.htm
Always a good idea to know what the risk reduction guidelines are and make your own decisions about how to fit them into your lifestyle. There's a tendency lately to disregard them because they can't be "proven" to help prevent LE, but that's because it's not possible to set up a research study that would study LE triggers directly--it would be unethical to submit women to suspected triggers just to see what happens. So risk reduction is often something we have to research and decide about ourselves. Doctors who pooh-pooh precaution measures are forgetting that it's not their arm that will be permanently affected--it's yours. Here's information about risk reduction measures you can take:
http://www.stepup-speakout.org/riskreduction_for_lymphedema.htm
Stacy, of course you don't want the area being radiated to be massaged, but that doesn't mean a LE therapist can't be of help to you even now, and the earlier you get help with LE the easier it will be to reduce swelling and prevent progression. It's certainly possible to wear a lymphedema sleeve and gauntlet for the duration of your treatment, or even to learn to wrap your arm with layered bandages. All good!
Please keep us posted, and tell us how we can help.Gentle hugs,
Binney0 -
Musical-thanks for the info. I will look into the sleeve and get some ointment to have on hand. I did already know about not have BP and no needle pokes in that arm, but that is about it.
No I don't have a baseline measurement from before surgery either. They took 20 lymph nodes, fortunately only one was positive.....but now I have LE to worry about.
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Teresa, don't know if you saw Binneys post before you posted but she offers great tips and help. SUSO has a wealth of info and some of the Ladies here input into that website. Heres a few more tips....
Temperature. We shouldn't let our arms get sun burnt, or to subject them to heat sources like showers that are too hot (and forget a nice hot bath on a mid winters day :-( ) or conversely temps that are too cold.
For those of us who do have LE, a good procedure is to either have a script ready to be filled or have antibiots at hand in case of cellulitis. For some of us who live rurally or who otherwise may find travel an issue, the latter option can be very convenient.
Since meds are a fact of life for many of us, it would be expedient to mention: Always remember to follow advice on how to keep meds including creams/ointments/lotions. Keep them at optimal stored temps and in the dark. That way we can be more sure our meds will last the distance. We have enough to do without having to fork out for more meds.
HTHs.0 -
Binney and Musical thank you all for your help and guidance. I made an appt with my breast surgeon for tomorrow. I will ask her to send me to a LE therapist.
I will let you know what happens tomorrow. Again can't thank you enough for your help.
Sending gentle hugs and healing prayers!!
Stacey0 -
I just came from LE-T, am making slow but steady progress! Today she suggested using one less bandage, maybe I don't tolerate high compression, so we will see in a couple of days. She even suggested I may be able to get by with CCL1 instead of CCL2 garments, which would simplify things CONSIDERABLY in being able to choose softer materials that I can tolerate. Found cording a couple days ago, wondering if that is slowing progress, so my NP and LE-T agree that I should continue with myofascial release with cord release. Oh, goody .... just what I want .... more PT appointments! But if that is what it takes ....
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Hi Stacey, lol not sure when your tomorrow happens but mine has, so just checking in to see how you went?
Linda all the best on your trial and error runs. LE is like that for sure. Any progress is great news where LE is concerned.0 -
Good Morning,
The information on this thread is fantastic. I just came back from a short camping trip, and I posted before leaving for some much needed adivse. My hand had swollen up after being dormant for over six months, and I was pretty scared ( and pretty p*ssed off). So I really appreciate you all weighing in on the ploysporine, long sleeve shirts, and excerices.
I thought I did everything right. It was a three hour drive and I wore my sleeve and gauntlet, but by the time I got to the campground, my hand was bigger than ever. I was trying to go over what I'd been doing differently. It's the first time I'd driven a long distance since my DIEP surgery, and I kept my LE arm elevated most of the time. But could it have been the heat in the car? I had the aircon on but it was a very hot & sunny afternoon. Or- could it be the sleeve itself. I read that sometimes putting a sleeve on can make the swelling worse? Has that happened to anyone?
Everyday on my campsight I'd raise my arm and squeeze it, hold it for ten second, and release. I did this often. However, our campsight was one of many, and people walking by thought I was waving. I got a lot of waves back, and a lot of those people with that confused ' Do I know you?' look. I also realized that on a scale of things that I can live without, LE currently at the top of the list - but camping is not far behind.
Today I'm off to the hospital to check in with my LE nurse. But I just wanted to say how much more secure I feel, knowing that I can come here and have someone kind and knowlegable to talk to.
Janet
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Janet M I had a similar problem twice when traveling. We camp often and one time we went to a new campground and my arm just did not like it. Same with going to visit a friend out of state. Turns out it was the altitude that affected my arm. Of course both times where in summer heat and humidity. So that did not help. I had to make sure to wrap instead of wearing my day sleeve of in the car I wore my night sleeve.
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Jennifer - Hi, what do you mean by 'wrap it'. I've only been taught about excercises, and the sleeve
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Janet~this link will give you an idea about wrapping. http://www.stepup-speakout.org/wrapping_bandaging_for_lymphedema.htm This web site had been put together by several ladies who post here. It sounds like perhaps this is something you should seriously investigate. I'm glad you survived the camping trip. Blech, I'm not a camper.
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Janet M when I first was treated for LE my PT taught me how to wrap with short stretch bandages before I could start wearing sleeves. From time to time I still wrap my arm. I feel it gives me more stability then my sleeve.
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Thanks Marple & Jennifer, I'll get reading.
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You ladies have such great advice, I'm so grateful! Question for you...will my breast LE affect my mammogram? I have a 9-month mammogram (for the radiation study I'm in) on Sept 4th. I was thinking about it tonight so I thought I'd ask you gals. I'll have my one year diagnostics in Dec. Are we having fun yet? Hope everyone finds their happy tomorrow! ((Hugs))
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Just figured out why I was so puffy last night - we are having thunderstorms this morning..
Edit: Mammograms will show all your scar tissue from the radiation. My breasts were still very tender and I just did MLD before and after the mammo and the swell stayed under control. If you are in any pain before, I would take a pain pill before going in.
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Swgee, I found this on SUSO and hope it gives you some direction. http://www.stepup-speakout.org/How_You_Can_Cope_with_Lymphedema.htm#Mammograms
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Good Morning,
I saw my LE nurse yesterday, and didn't leave there any more enlightened. She just said I might need a glove to go with my sleeve. I already have a gauntlet, but I think that's hurting, rather then helping, my puffy fingers. When I put it on it seems to make the swelling worse. But I brushed up on my massage technique and I'm going to drink gallons of water, and look for a good physio therapist.
Meanwhile I'm flying tomorrow, and I'm concerned about the arm. I'm also concerned that it may seriously impact my abiblity to do my job when I go back to work in a few weeks. So it was another sleepless night, but I tried to read as much about lymphedema as I could.
Flare up seem so random! The good news is that I'm going to blame camping for all my troubles, therefore assuring that I'll never have to see the inside of a tent again. But what about alcohol? Some ladies have reported that wine increases swelling. Any thoughts? I'm not a heavy drinker, but I do enjoy a few glasses of red wine with dinner.
Janet
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Janet, I didn't have finger swelling until I used a gauntlet for hand swelling, and I didn't have hand swelling until I used a sleeve for the arm swelling! Too late I saw the warnings from many other women here to PROTECT YOUR HAND!!!! ALWAYS!!! Get a glove, TODAY for your flight if at all possible. If not, do you know how to wrap your fingers with bandages? Each time you put pressure up above a vulnerable area, the fluid will collect there more easily if you are prone to that, so you start compression distally (from the furthest away from the body, like the fingers) and work proximally (toward the body) by putting more compression at the fingers and hand, then gradually less all the way up the arm. That is how the compression sleeves work, but unfortunately, they put pressure at the wrist that is sometimes higher than the hand can tolerate, hence the swelling.
I went on vacation in June, just a few weeks into my first LE flare, was very discouraged, resentful that I was expected to be in bandages all the time, so LE therapist suggested I could use a sleeve a few hours a day for a quality of life boost. So I bought an OTS glove at a local medical supply/pharmacy - they only had a couple things available, but it worked out for me, kept my finger and hand swelling down.
So I would encourage you to try to find at least a glove to protect your fingers! You MIGHT be able to get by with Isotoner or IMAX arthritis gloves.... some women have also done that, and my finger swelling did respond to using the Isotoner arthritis gloves, but there is a cuff on them that kept my hand swollen since the lymph fluid couldn't get by that little "insignificant" seam on the cuff.0 -
Janet - I am flying for my first time with LE too - on Monday - I will jump in your pocket and tell your LE to behave!!! Have a great trip!
Edit: Linda, I use the isotoner gloves but split open the seem at the wrist a bit more so the cuff doesn't do that and My LET and I made a little pad to go on the top of my hand and under the sleeve end to help move the fluid out of the hand.. Works great. Problem is, everyone is different and it took a long time to figure out what works for me.
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GmaF, actually, I sort of did the same thing -ripped out the entire cuff seams of the glove so it lays pretty flat on the arm. I also am "playing" with a self-designed pad for back of hand - I put a piece of orange foam cut to allow for the hand/finger knuckles space while putting a little pressure on that soft tissue at the bases between the fingers where I seem to get fluid collected, then put a thicker foam over that and the entire back of my hand, taped them together into an old nylon stocking, and it is working pretty well. My LE therapist admired it and told me good work! And you are right about it taking a long time to figure out what works "for me" - and it also takes a really good and dedicated LE therapist to help navigate the issues. My first one sort of decided I had met his goals and that was the end of it, regardless that I had not met MY goals! So my new one is really helping a lot.
Janet, is your LE nurse also a certified LE therapist???? Or does she just have on-the-job training and experience? I am a little leary of her from what you have told us here. Not really my business, but a good LE therapist that you trust can make a WORLD of difference!!!!0 -
Janet_M, check this out. http://community.breastcancer.org/forum/64/topic/798356?page=1#post_3371695
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Marple - Thanks for the link. I am actually at Ptincess Margaret in Toronto - but think that my nurse may be an LE nurse, and not a therapist.
Linda - I'm a little leery as well, and I'm going to find myself a good therapist, and get a glove.
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Janet - The nitrites in wine make me swell.
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Linda - I'm gloved! So gratfeful to find out about the glove vs gauntlet before my hands turned into a pack of suasages. Thinking back, the chain of events was clear. I had slight swelling in the back of my hand, then drove four hours to a campground (Which I'll never do again! ) with my sleeve and gauntlet. It was my first time wearing them both in a while and I couldn't understand why my fingers were so swollen. Now I do.
Went down to the 'Compression Boutiqe' near Princess Margaret and asked for a glove. They had nothing in my size, but went through all their boxes, and when nothing turned up, they gave me an order that was for someone else, who would be able to wait a few more days. I almost jumped up and hugged the woman who was helping me. She really went above and beyond. By the way, she was also leery of my nurse's advise.
I'm one step closer to getting away for a long weekend, and when I come back, I'm finding an LE thearpist. Thanks girls!
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Yay Janet, what good fortune. I hope the glove keeps your swelling down. You appear to be on the right track.
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Way to go, Janet!!!!! I am so glad you are getting on top of this now rather than later! Have a great trip!
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Janet, I learned just last week that if I drink more than one or two glasses of wine (at a wonderful wedding celebration!!) and forget to drink water as well, I will wake up with a very achy and tender arm the next morning. I don't swell much but I get very achy when my LE acts up. I'm certain that one or two glasses of wine does not affect my LE, but drinking it without water causes me to become dehydrated, and that's the culprit for me.
Hugz4u gave a great suggestion once--for every glass or drink of alcohol or wine, drink two of water. That's wonderful advice for more than avoiding LE repercussions, as of course it fills you up and slows down both eating and drinking. Eating celebration food usually means eating salty food.
When I woke up with the nasty arm ache after the wedding, I did realize what I'd done (four glasses of wine over six hours or so, but truly I think I'd had only one glass of water during the evening--bad, bad, bad!). I drank tons of water all morning and went on a long, speedy walk, and my arm felt much better after a while.
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Gee Carol--if I drank two glasses of water to every glass of wine I would be celebrating in the bathroom instead of the reception hall! Even with one glass of wine! I also ache after one glass of wine so I just sip at celebrations.
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Thanks Gma and Marple!! I think I'll give the radiologist a call Monday and just give them a heads up and see what they have to say. I know my RO is getting ready to go on maternity leave and I don't want to fall through the cracks, or get there and find out they'd rather do something else.
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@". Breathe I can do this!
And another thing WTH is bocce ball? We are having a tournament! Is it in door sport or do I have to bring hat? I'm not sure about how my LE is going to act. Prayers would be appreciated.0
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