GRRRRRRRRR I HATE LE..........
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Thanks Binney4 for the book info. I will check out the library. Quiche - Aaaaaah the eye roll. I believe the health care workers can do it better than my 17 year daughter.
Okay here is my rant for today. In my last post I had mentioned that I have found LE therapist and was waiting for onc. office to send over referral. Today is Wed. and I think I have made head way. (I could feel the eye roll over the phone lines today) I have talked to a different person everyday (onc. office). Each day I have asked them to send the referral. For 2 days they have told me that I have a referral for physio from my onc but they have yet to hear back from physio dept. in hospital. Uuggghh!! I have given them name, address, phone number and fax # of the clinic I wish to be referred AGAIN and explained this clinic has guaranteed me a 10 day waiting period after referral and is closer to my home. Office said they will send referral over today. Not that I don't believe them but............ I will be calling clinic this afternoon to confirm. Dawne-Hope - love the lackadaisical attitude. I am sure we have all felt this at one time or another through out this long journey.
hymil - So true about prolonged survivor problems. Twenty years ago our friends and family did not survived breast cancer. So I guess it is up to us educate our friends, family, health care workers and doctors. I had never heard of lymphedema before and my surgery was Jan./09. Diagnosed Aug. 4/11 and fighting to get proper treatment.
Kira - As always, thanks for all the links. Friends, family and myself need to know more about LE.
Thanks to all the swell ladies for the info, support and the laughs. Your the best.
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Okay, here I am with the links again:
There is a long pdf, the International Best Practices for Lymphedema
It's on the right hand side of the home page:
http://www.stepup-speakout.org/
Here's a direct link:
http://www.activahealthcare.co.uk/lymph/pdfs/lf_best_practice.pdf
Melanie_Ann, if you look at page 38, they show a way to cut foam for either dorsum or palmar swelling.
It's getting a bit old: about 5 years, but it's very comprehensive.
Here's a link for Solaris Swell spots:http://solarismed.com/products/swell-spots/112-swell-spots-product-gallery
You can buy them lots of other places, but the palmar one is very good for palm swelling
Kira
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Hey Ladies.....................well took the trip up I 95 today to be remeasured for the sleeve....When the fitter put on the sleeve the manufacturer sent to me she said ................oh yea, this is too long..............well she remeasured for a new sleever....and there will be 2 of those.............and had to remeasure for the night garment...which fits differently....and then measured for the "glove" which they said I am going to need also...........................what a pain in the ass...............the glove is going almost all the way down my fingers............its ridiculous...............
I was in my wraps about 1 hour, took them off when I got to the fitter, and never bothered to put them back on............just did not feel like doing it again..............I know , I know.........but I was just fed up with all the bullshit
Sometimes I get "vertigo", and tonight is one of those nights..............gonna try the Neti pot, in case it is sinus, but doubt that.......................I am itching like a monkey...........not sure what that is from either.....................guess its just a bad day all around...............oh well, maybe tomorow will be a better day............
It will be...........its my adorable grandsons 13th birthday......he is so thrilled to be a "teenager", and I am making his birthday cake................sour cream pound cake........his choice, so I'm sure tomorrow will be better..........................maybe I'll sleep off the vertigo, sinus, or whatever the hell it is, and wake up on the right side of the bed tomorrow..............................Like my mother use to say when my Dad would ask "what's wrong with Ducky today".......................her answer would be "leave her alone, she got up on the wrong side of the bed this morning"
So here I am........LE.........no wrap...........headache, and bored out of my skull.................holy shit.......................where's the Vodka.........................hugs
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Give that woman a brownie!!!!!!!!!!!!!
Ducky, hope you feel better tomorrow.
Leah
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Ducky--sour cream pound cake. Yummy! Will be your brownie for the day. Please have a better day today. Becky
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Sure hope the dizziness was not from the Femara...............it was horrible. Probably worst vertigo (if it was that which is possible) I have ever had...........When I laid down it got so much worse........I couldn't even look at the ceiling fan going around, cause if I did it made me get nausea..............had it all through the night........today it is better, but still feels like it could come back..................not sure if I should take the Femara today, or take a couple days off................I thought if it was that, the dizziness, would have come right away....................not so much the aches, or flashes, but the dizziness seems as if it would come right away ................I have been on it 11 days................Guess I should go to the Femara thread and ask some questions........ok ladies have a good day .
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Kira- thanks! I actually did buy a swell spot for my palm. I need to be more diligent about using it. It's hard to use my hand with it on but it does feel nice. Maybe if I was consistent I would notice more of a change. And I will check out that document. Thanks a lot!
I do have some good news today. For the first time- since I developed LE in March, my LE arm/hand is measuring smaller than my other one. My hand looked almost normal today when I went in! This wrapping is hard work but I think it's starting to pay off. I've only been at it about 4 months..lol. My therapist did say that it may be due to some atrophy but we're working on that. After my LE session, they have me lifting some weights and doing stretches and using the hand bike. I'm pleased!
Ducky- I hope today is a much better day for you!
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Thanks Melanie................Glad things are working out for you...........You are so adorable.....I give you credit for being able to smile so broadly after all you have been through......your an inspiration.................maybe I have to pull out those "big girl panties".............hugs girlfriend.
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Ducky, I get bad vertigo at times and it sucks big time. I had a virus back in 1975 that fried my left ear--I did get most of the hearing back, but was left with vertigo, that was bearable until I set it off in a yoga class about 5 -6 years ago. After seeing a neuro-otologist, and an otologist, I take meds every day--hate them! but it's better than the vertigo.
Hope you're better. I swear by ginger--I get nauseated with the vertigo.
Kira
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Melanie--Great news. Glad all of your hard work is paying off. I got the CD in the mail today. Thanks!
Ducky--I used to get vertigo badly and the meds did not help. An ENT gave me some exercises for it. After about a month of doing them it went away. Hope yours goes away soon. You have enough to deal with without something else. I am still thinking of sour cream pound cake.
Becky
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Well we did have my grandsons party with our sou cream cake........it was really great. The vertigo has eased up..............It was better this morning, but was acting like it was coming back.........I think I might have had a mild hot flash.,............yesterday and today. not sure, never had one before......................I took 2 motrin, and I am feeling better. Not suppose to take mortrin, but I would have taken arsenic if I thought it would have worked..........gonna take my Femara tomorrow.........didn't take it today thinking it might be what was causing the vertigo, but I don't think it was.......ok ladies headed to the shore tomorrow for 5 days.......will be on when I come home.....................hugs
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ok this has nothing to do with LE but Niagara here I come! Woo hoo!
Have a GREAT weekend!
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hey swell gals... so, thank you, kira; for the carrot info. gonna go back to my therapist. we never did anything but use the short bandages. i've now been dxed with Hashimotos' disease, they say its common after chemo with ms.. anywho; edema is one of the s/es' so, my hand is minnie mouse size again. i've been wrapping, at nite, but need more tools in my kit right now. that may be just the thing... and Binney, the paint roller totally worked!!!thanks you ladies, for sharing all your experience with the rest of us.....3jays
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Geez, now I'm more confused than ever. I saw my therapist yesterday. Her assessment is that my swelling is borderline and that bandaging would do little or no good. She said now that I've gone to the next stage I can't go back and shouldn't expect my hand/arm to ever be the size that it was. She felt my swelling was insignificant and acceptable to live with. We decided not to bandage, but I'm starting to second guess myself. This is so opposite of the successes I hear on this board. My bubble is burst. On the good side, I'm heading to the beach for the weekend! I'll be offline for a few days but will catch up next week. Take good care.
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OK - I have a ridiculously basic question that I am embarrassed to have to ask ... Are daytime compression garments supposed to keep one from swelling over the course of the day? I'm finding that, these days even when I don't do anything particularly strenuous, when I take my daytime garments off, my fingers look ok, but the dorsum of my hand is considerably puffier than in the morning when I take my nighttime Tribute. Thanks, KS1
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Ducky...Femara can cause dizziness as well as any of the AI's. Are you taking it in the morning or evening? I was on Femara but switched to Arimidex to see if any of my side effects would be better...and they are. When I first switched I had a few episodes of dizziness one night. I will keep my fingers that is not your case. Just remember that most side effects do improve after 3-6 months for most people.
I am doing okay. Still puffy in the back but better than it was. I have not used the paint roller because the handle is too short and I have yet to go back shopping. When it is 100 outside you just don't go out unless you have to.
Hope everybody has a wonderful weekend. We have a busy few days trying to get lots of fun in before school starts on Wed. When did my baby grow up...she is going into third grade.
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Quiche, I don't understand your therapist--is she saying you're fibrotic so there's no point in bandaging? That's hogwash!
Almost all lymphedema (with the exception of women with tons of disease in their nodes, that's active) can be treated--have their fibrosis and swelling addressed.
You can expect your hand/ arm to reduce to normal size: that's the whole point of CDT.
Can you go to someone else?
Measurable swelling is just one way to diagnose LE: when people are fibrotic, their skin is hard and it may not swell, yet their disease has progressed. It can be treated, and should be!
Kira
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Hi Kira, Thanks for your reply. I don't understand it either. I'm not fibrotic. As a matter of fact, I asked her about the risk of fibrosis or long term damage if I didn't do anything about the swelling and she told me that there's no risk and I shouldn't worry about it. Most of what she said was so contrary to what I've heard it's kind of scary. I'm beginning to think she really doesn't know what she's doing. With your words in arm, I'm going to go back and insist on treatment and see how it goes. If I don't get any response there is a lympehdema center nearby I can tap into. I'm trying to avoid going out of pocket, but I will if I have to.
Jo-5: Thanks to you too. That's good advice, at the very least I should have knowledge of bandaging and the tools at hand. At this point, though, I'm not really sure we have it under control.
Thank you both for sharing your knowledge. I have a feeling it's going to make my life so much better :-)
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just jumping in to say: it always, without fail; helps me to wrap.. you need to learn to do so on your own. then, her opinione won't matter. i don't use measurements, or such, anymore to tell how im doing... ive had this long enuff to know, if its; bothering me; its' off! im gonna looke into something for night for my hand, KIRA: any suggestions? everything else i deal with ok; but the trifecta right now, is a pian..that would be nueropathy, le; and edema from my hypo thryoid. i need some extra something. this hand has stolen my sanity!!!! 3jays
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Hi Ladies, you really are a wealth of information, thank you for your support and encouragement. I am three weeks out from my oopherectomy. I went in thinking it was going to be a pretty easy surgery and I had a pretty rough time of it, but, I am finally starting.to feel better! I'm pretty thrilled about that. I'm seeing my surgeon tomorrow and I can't sleep, he has been in absolute denial about my LE. I'm really nervous, I think I want to tell him I am really disappointed in how dismissive he has been and that it has totally affected my trust in him as my doctor.I have already taken an ambien and just can't seem to settle my brain and heart. I hate LE and bc and I hope I can be comfortable in my own shin some day. Grrrrrrrrrrrrrrrrrrrrr!!
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Christine, whenever I"ve needed any surgical procedure--and I've had a couple of gyn surgeries due to tamoxifen, since bc, I find it brings back a form of PTSD--it's at the same hospital and I just get so upset.
The last one, I wore all my LE garb on my bad arm, and the anesthesiologist had a "brilliant" idea, to withhold all fluids to reduce my "edema"--so I had the surgery, the anesthesia, and woke up really sick to to dehydration. And he was so pleased to be "helping" me.
The lack of knowledge is astounding.
Hope you are gentle to yourself in your recovery. I really think it's PTSD. And an oophorectomy is still a major surgery, and it causes surgical menopause which is no easy thing.
Kira
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Christine, yikes!
You've really had a pile-up of stressful situations to deal with. How did the mole biopsy turn out? (Better be benign after all the trouble it caused you!)
Hope you're giving yourself some room to cry and storm. Here's a page you might want to copy off and take with you to give to your surgeon -- it's a quick, well-documented doctor-to-doctor crash course in LE:
http://www.stepup-speakout.org/essential%20informat%20for%20healthcare%20providers.htmYou WILL get back to comfortable-in-your-own-skin
, but it takes time for everything to settle out. Hang in there! And let us know how it goes with the surgeon.Be well!
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KS1: Hi! I've been wanting to respond to your post, but hesitated because I am far from an expert and still trying to figure things out. So for what it's worth . . . I noticed that same thing. I'd do my exercises, MLD, admire how good things were starting to look, put my sleeve/glove on only to have a big poof in my hand within a few hours. I learned on this board that there is a difference between hand and arm lymphedema. The hand being more complicated. Because it's not tubular it can swell more easily and is harder to drain. I found that not wearing the sleeve/glove worked better for me so I quit wearing them day to day. My therapist was OK with that, but stressed I should still wear them when doing anything strenuous, flying etc.
(((Christine5))): Hugs and warm wishes to you as you heal and get through this. I can totally relate to docs being dismissive. My doc is totally focused on "cancer free" and fails to look at the big picture. He actually did show a little heart when we were working through hormone therapy, but LE is another story. I seriously think he just knows so little about it (as Binney's link describes).
Best to all.
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And thanks 3jaysmom! That's my new strategy . . . get in there and learn how to wrap so I can have more power over this. I was able to feel my LE long before anybody else could SEE it. I found the Avon Research paper fascinating when it mention the use of Bioimpedance Spectroscopy (BIS) and Optoelectronic Volumetry (Perometry) in early detection of LE. I'm glad to see their making strides, now if only the medical community will listen . . .
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3JaysMom, have you ever tried the Caresia glove--it's meant to be used under a short stretch bandage, and ironically, I think it's sewn better than the official Solaris--although their gloves are nice.
I've never tried it myself--what I do is to build up the wrap with lots of gray foam on my palm, dorsum, forearm and put carrots between the webspaces.
Here's a link to Caresia--it's sold lots of places, but you can ask the lymphedema products people what they think:
http://www.lymphedemaproducts.com/products/caresia-glove.html
LindaLou showed a picture of how she was wrapped by Steve Norton: lots of padding--a dorsum swell spot, and palmar swell spot and lots of foam. The more you make your hand round like a circle, the more pressure the bandage exerts on the front and back--rather than the sides.
Totally agree with you about the utlity of wrapping and the feeling you get for when it's needed.
Hope the hand settles down soon.
Remember how KS1 did a komprex cut out what went on her palm and dorsum? It's another way to add layers. She put photos in this thread.
Let me know what works.
Quiche--makes so much sense to have the tools and figure out when and how you need to use them.
Kira
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I think I have developed mild lymphedema. My arm and hand are slightly puffy(although it feels huge!) It is sore to touch and just aches. Other than the compression garments is there anything you can do for the pain part of it?? I will see my dr next week and this week I am on vacation trying to enjoy myself and relax but the pain and soreness keep coming up. Thx for any help.
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Karebear,
My lymphedema first reared its head with a lot of pain. That was before anything was visible at all. First my chest wall, then my forearm. My LE isn't severe, and if I weren't really skinny it probably would be invisible. At my most swollen, my arms measured the same size as each other, but I'm an asymmetrical athlete so my unaffected side is normally noticeably larger.
I have found that manual lymphatic drainage helped my pain a lot. After the first session, it was immediately better. I don't see much difference looking at my arm, but I certainly feel it.
All that said, you should be sure that your pain is not cellulitis. Kira or Binney will probably be along with better and more specific advice, but if you have any redness or fever or just feel bad, I would get to the nearest medical facility even if you're on vacation.
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I looked up cellulitis and It doesn't look like that is the problem. So that is good. It isn't hot to the touch just hurts and looks a little puffy.
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Kerri--so sorry you seem to be joining this "swell" group. LE can be painful--when mine first came on, it really hurt to make a fist.
What you'll need to do is to get a referral to a qualified lymphedema therapist:
http://www.stepup-speakout.org/Finding_a_Qualified_Lymphedema_Therapist.htm
Any of your doctors can write for it.
We also have a page of what to do while waiting for an appointment--there are links on the page:
DO NOT try and treat this yourself!!! Proper professional treatment is essential to getting control of lymphedema and preventing its progression. Treatment can be expensive and inconvenient, but this condition is life long, potentially disfiguring, disabling and possibly life-threatening (if you get an infection known as cellulitis) so professional evaluation and treatment as soon as possible is essential.
1) Get evaluated promptly by your doctor to rule out other causes for the swelling in your hand/arm, and get a referral to see a well-trained lymphedema therapist;2) Drink plenty of fluids -- staying well hydrated helps dilute lymph fluid and keep it moving freely;
3) Elevate the swollen arm or hand as much as possible during the day and on pillows at night; support the arm well so that it doesn't tire;4) Several times a day pause and do some deep breathing -- this helps stimulate the largest lymph vessels in your body;
5) Raise hands over head as high as is comfortable for you, three times a day, and pump fists 20 times;6) Call for medical help immediately if you have severe pain, redness, fever or feel ill;
7) You can try mild compression gloves by either Sammons Preston or Isotoner® Fingerless Therapeutic Gloves if your hands and/or fingers are swollen until your appointment with your lymphedema therapist. Be sure to bring them along to your appointment;8) Do NOT use ACE wraps or any other wraps without the advice of your lymphedema therapist after your evaluation and your treatment plan is scheduled.
Also, here is a link to a new position paper on lymphedema, and it discusses how lymphedema starts long before there is measurable swelling, and prompt treatment leads to the best outcomes:
http://www.avonfoundation.org/programs-and-events/lymphedema-information.html
You mentioned compression garments--were you fitted for them? If you have them, and there's no infection, you can cautiously try to wear them and see how you feel.
Overall, elevate, hydrate, deep breaths, monitor for infection and get a referral to a good therapist.
Hope that helps.
Kira
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Kira: Thank you so much for all that info. I have spoken to my ONC Nurse and she said to keep an eye on it, which is what I have been doing. I am trying to keep it elevated and pump my fist. I will be seeing my ONC 3 days after I get home from vacation, so I am just monitoring it until then. It will hurt bad some days/ part of the day and other days not too bad.
I don't have any garments yet and won't be evaluated for them until I see my dr.
Thanks ladies for the info it is very helpful. I will be taking it easy, isn't that what I am suppose to do on vacation???!!! LOL
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