GRRRRRRRRR I HATE LE..........
Comments
-
Christine...
I have an area the swells on my belly on the right side. Which was also my cancer side. At first I thought it was just something from the change in my body after all the surgeries. It too hurt to begin with and later on I noticed that if I mashed on my upper chest..it sent pain to that area too. SO I thought nerve damage was causing my pain. The swelling is LE..even my new LE PT noticed it and agreed. When acting up it looks like my right side is pregnant.
My leg looked great today and my weight was down another pound. I got such great instruction on doing MLD. She also has started working on a plan for my arm and trunk. Feeling down tonight think of all the work I will have to do to keep this under control. My good leg now looks puffy compared to my bad one...I guess it's a good thing she decided to be proactive and put compression on my good leg.
Exercises are tough but I am getting through one set a day. The goal is to do them twice a day. I knew I was still very weak in my muscles but I just didn't realize how bad. She still thinks we can reverse some of this muscle damage that was done by chemo. I told her a little bit more of my story with chemo and she now realizes how far I have come. I am still just so glad I found somebody that cares and can't wait to get back moving without struggling to walk.
Thanks everybody on here for all the help and being here to listen.
0 -
Aw, Kitty, what a tough journey you've had!
Sooo glad you're finally getting the help and understanding you need. Losing all that fluid must be pretty exhilarating, but I sure hear you on how depressing it is to struggle with control. One day at a time is all I can handle, and I function best when I'm not projecting into the future. Except of course for the upside: knowing all you need to know to keep yourself well and having the skills to do it!
There's a lot of freedom in that -- you'll get there!Gentle hugs and brownies,
Binney0 -
Thank you ladies. Kitty and Kira, Binney, I appreciate your imput. I will ask my PT about it, I think I will try to get in to see her. My spirits are a little better tonight! I wasn't sure if I was just in a downward spiral and where I would end up. But today is a better day...
Kitty, I am so glad you have someone that is compassionate and caring. PROGRESS is a wonderful thing!
We all need a break! Brownies all around!0 -
Kitty--I am so glad things are better. You are so right about the time involved to keep this under control but keep at it! As I keep at it I feel stronger and stronger each day. It also improves my mood tremendously. So it will with you. You have had a lot come at you but you sound as if you are really a survivor! Maybe I will be in your neck of the woods someday and we can do Lebed together. Hang in there. Sounds as if your therapist is a keeper. Becky
0 -
My LE problem is very mild to yours, but as we didn't know that that was what the problem was, I ended up being a whole week in the hospital on 3 major IV antibiotics 2-3 times daily. My problem started after my lumpectomy when my breast continued to look red/purple and was so hot to the touch. My surgeon assumed I had an infection and so put me on antbx. I took various kinds over the next 3 wks to no avail. Eventually she said I needed to try them IV. After 5 wks of antbx tx's, a negative fluid culture, a negative skin biopsy (she was ruling out inflammatory breast cancer) a surgical oncologist said that she had seen my problem just a few times and that it was a result of the lymph system not draining well. I had 5 nodes removed, but no other indications other than the breast sx, of any lymphadema. She finally sent me home last night and so now I can start my chemo tomorrow. I feel as though I have been through the wringer and am so emotionally exhausted. I am now at 7 wks post-op and have been on antbx for 6 of those. It seems like such a reasonable answer I can't understand why it wasn't considered before.
0 -
Jampus, breast cellulitis definitely can go along with breast lymphedema--and sometimes the redness can linger.
Here is a link to breast/trunk lymphedema information:
http://www.stepup-speakout.org/breast_chest_trunckal_lymphedema.htm
Are you starting radiation soon?
This sounds like a real nightmare.
Kira
0 -
Hi Kira, I will check out this website. I had posted a question on the board to see if anyone had any ideas but got few responses, and I am not savvy nough yet to find all the hidden information on this site. Information I know is there as people allude to threads, I will have to sit and spend some time on here.
The whole thing was a nightmare, but I am glad that we have a reasonable suggestion as to what is happening. The time spent in hospital was very scary (and I am an RN) probably why huh ??!! but I felt, like evryone here at some time or other, that it was all out of my control and my life depended on these nurses knowing and doing their job well.
I start chemo in 6hrs, so hopefully that will go alright. It seems so far like nothing has gone my way, it must be time for that tide to turn
. So, I thank you again for teh reply and link and I will have a quick look then try andf get more than the 3hrs of sleep I have had tonight. (it is 5am here)
0 -
Jampus, breast lymphedema is ironically more common with SNB, as the path out of the breast is taken, but so under-diagnosed.
I think being an RN you know all the potential issues, so the hospital would be more scary for you--ignorance can be easier at times.
It's definitely time for the tide to turn.
Hope chemo goes smoothly today, and you get some rest.
Binney who is our guru here, she has family in Sitka.
Kira
0 -
Kira, that last post of yours makes me wonder: is the incidence of LE after SNB highly understated, because diagnosing breast LE has even worse protocols/benchmarks than arm LE, where there's a way to diagnose via measurements, but no consistency on the studies' type of measure nor threshhold for what is considered to be an LE diagnosis? Have you ever seen any incidence studies targeted specifically at breast or truncal LE?
Carol
0 -
Carol, from this site:
Email to a friend Print Page last modified on: August 25, 2008
Question fromAmy: Does lymphedema only occur in the arm or can it be in the breast as well?
Answers -Nicole Gergich, M.P.T., C.L.T.-L.A.N.A. : Absolutely! Not only can it be in the breast as well, it can be exclusively in the breast and chest wall, even if it does not appear in the arm. So we need to recognize that breast edema and chest wall edema exist and should be treated.
Jennifer Sabol, M.D., F.A.C.S.: As a surgeon, I probably see it more acutely than most and have a more difficult time getting other physicians to acknowledge that there is such an entity as lymphedema of the breast which is actually quite uncomfortable for some patients as well as alarming, because it is difficult to ask for treatment for swollen breasts. I think maybe you can comment on how you manage patients like this.
Nicole Gergich, M.P.T., C.L.T.-L.A.N.A. : I would say, first of all, recognition is part of the key. I believe anecdotally that I am seeing more frequency of breast and chest wall swelling - lymphedema, if you will - now with the sentinel node biopsy, as we are removing the direct drainage pathway out of the breast. Unfortunately, it is going far underrecognized. Treatment for breast and chest wall lymphedema is analogous to the way we would treat the arm, meaning that the patients would require lymphatic drainage, compression, therapy, exercise, and skin care. Many of these patients will require custom fit or near-custom compression bras.
Kathryn Schmitz, Ph.D., M.P.H., F.A.C.S.M.: I would say this is an international problem. I was at the Australasian Lymphology Association meeting in Perth in March, and this issue of seeing more breast edema was a theme there. It seems to me that the compression garments and treatments available are not as advanced as they are for arm edema, the compression garments in particular.
Nicole Gergich, M.P.T., C.L.T.-L.A.N.A. : I would agree with that to an extent. I think there are excellent compression bras that exist. I agree with you that we are as not highly evolved in this area in recognition, treatment, and management as we are with the arms.
Jennifer Sabol, M.D., F.A.C.S.: I would add one note of hope, and it is sort of anecdotal. I think this is one of the few times that lymphedema does have a tendency to regress. It's probably due to the acute injury of the radiation therapy. Breast edema does tend to go down over time, though it may not disappear. It is a very slow resolution of the edema and it's almost never complete. I generally tell patients to expect a very slow, ongoing improvement, even over 2 to 3 years after their radiation therapy, until they reach a stable plateau. I'd be curious if you two have found the same sort of better overall prognosis for the breast edema.The journal of lymphoedema article on the SUSO page has references and cites a 41-70% incidence of breast oedema.
Kira
0 -
Good Morning All -
Back in Florida - had a thankfully uneventful but long trip back to the States. The Juzo sleeve and Jobst gauntlet both worked well, felt good to wear them and I'm very grateful at this point to not have any evidence of swelling.
Yesterday I received the Lebed BC package - 2 exercise DVD's and a book. I'm really excited to learn more about Lebed. The LE and Norton exercises have made a big difference to me, maybe I can help to show them to others too.
Wishing all of you a non-swell day.
0 -
Jampus, in a small (and old -- 2004) study in Finland, researcher Riita Ronka found breast LE in 28% of patients who had SNB:
http://www.ncbi.nlm.nih.gov/pubmed/15370612
But as Carol points out, without standards for diagnosis that number is unreliable. Still, it does indicate there's a much bigger incidence of this than is usually acknowledged. Or diagnosed. Or treated. 2004 is also the year I developed truncal LE and couldn't find a therapist who knew how to treat it--Ronka's study is what made me sure I was going to fight like crazy for lymphedema awareness.
LE is an inflammatory condition, and lingering redness in the breast is a fairly common indication of it, though it's only rarely correctly diagnosed. It's great that the surgical oncologist was finally able to recognize it.
Have you seen a well-trained lymphedema therapist? S/he can make a huge difference in how you do moving forward by teaching you how to do Manual Lymph Drainage massage and helping you find garments to control any swelling. All of will help to control the inflammation and control the progression of the LE. In case you don't already have one, here's how to find a qualified therapist near you:
http://www.stepup-speakout.org/Finding_a_Qualified_Lymphedema_Therapist.htmPrayers for smooth sailing with the chemo -- 'bout time you had an easier time of it!
Very gentle hugs,
Binney0 -
Joy, I just love good news -- especially when it's "not swell"!
Have you found any other "swell sistahs" in Hungary? It's more fun to do Lebed with a friend or two (my daughter and I do it together). Enjoy!Hugs,
Binney0 -
hi glas, been "out" for some days with the darned hypothyroid.. went to fitter, and told her my arm is MORE swollen in the am.. of course, she said NO< it Can't be.. then she measured... yup, and inch bigger in am, than at 4 pm.. don't know why that is, but have gotten in touch with le therapist.. i need a nightime garment.. ya think??? i guess its bc my nights are days, and vice a versa right now.... we'll see. off tommorrow ar 4pm to be measured.. it'll be a roough one.. we have a cold front now, and i always swell.. an inch won't make that much difference in the sleeve, i don't think.. and, its #1 of 2...which i really need to get...
this fitter is a twit, but i now know thats' the norm for here... so wish we were in one of those states where the therapist also fitted you!....3jays
0 -
Saw my PT yesterday. (He does fit me for my garment 3jays, and I am glad just for the fact of not having to go to yet another medical person for something.) He is great. I guess I was going so he could assess how the new garments are going. On the good side, my arm is down. It is only 6% larger than the other arm now. It was 20% bigger at its high in October/November during rads. Very happy about that. And the tribute at night seems to be working great. But the day sleeve/glove is still causing puffiness in my hand. Kira, you are so right, hands are tough. So now he put a pad in my glove and two little square pads right at the wrist in the sleeve. Last night it was still puffy. Grrrrrr...... he also told me to try the old glove with the new sleeve and see how that works. Said something about the way the garment is stitched could make a difference. This is frustrating. Hope your new garments work out for you 3jays, and hope you get them quickly!
0 -
I note with interest the above post about breast edema. This morning I was officially diagnosed with breast LE by my PT. Feels like I finally have the acknowledgement from a medical professional. PT will send a note to the BS to let him know of the diagnosis, and to allow insurance coverage for treatment. Maybe this will open the BS's eyes to the possibility of an active, young(ish) person like me getting LE. I continuously asked him about LE and was dismissed with "you're unlikely to experience any problems". I believe that the LE started with an aggressive fine needle aspiration, done in Budapest, as I experienced tingling and swelling immediately afterwards.
Although the LE is mild, it's an uncomfortable swelling in the entire breast area - PT says that she calls it truncal LE. I'll have 3x/week sessions with her until I leave again at the end of the month. Feeling good about starting decompression therapy next week. PT recommends a sports bra that compresses (I usually wear this type anyway) and looking into Spanx camisoles. If anybody has recommendations on good compression bras I would appreciate it.
Binney My 13 y/o daughter partners with me for pilates sessions, so I will segue into Lebed too! I very much look forward to learning more about the Lebed method.
0 -
Joy, I'm really sorry about the diagnosis
, but so glad you can finally begin therapy and learn how to keep it under control.Have you looked over the Truncal Lymphedema page at StepUp-SpeakOut? At the bottom are links to several kinds of truncal compression garments. I use the Wear-Ease cami, and many women here get away with using UnderArmour t-shirts. Lots of choices, fortunately. The page is here:
http://www.stepup-speakout.org/breast_chest_trunckal_lymphedema.htmKeep us posted! Gentle hugs,
Binney0 -
Thanks, Binney. I feel good about being recognized and finally having a diagnosis. I've known for awhile that I have it and have been trying to follow LE protocol as I learn it. I've ordered several cami's from the link and look forward to getting them.
As always, thanks so much for the support and information.
Wishing everyone a "non-swell" weekend!
Joy
0 -
yippie...My arm looked good enough she didn't think it needed wrapping. On the other hand...she couldn't believe how bad my garments fit and that nobody has done anything for the truncal part. So she is going to fight for me to get a new Tribute or Jovi for the arm and a vest too. She also wants a new custom sleeve made. I was right it is too tight from the elbow down and maybe a wee bit to large at the top. It wasn't on two minutes and my fingers started changing color. LEBED and some exercise to get more motion. One of my movements is off by 40% compare to my good arm.
Hope everybody has a swell free week! Going to unwrap my leg and take a relaxing bath. I got sad news this morning and need to destress. My best friend passes away in her sleep last night. Very unexpected.
0 -
Yippee on the progress Kitty! I am so sorry about your friend. My condolences and hugs.
0 -
Had my first LE therapy today with the PT and it went well. She worked through the opposite quadrant and down, and explained that she was trying to work a type of "suction" to massage the lymph from the swollen side. It felt good - and afterwards I wasn't tingly on the affected side. So far so good - I return for 2 more sessions this week.
Hope that everyone is having a good week.
KittyDog So sorry to hear of your friend - hugs.
0 -
bump0
-
okay anybody no anything about the Jovi shoulder half vest sleeve night garment? I don't see what she showed me on there page. It is an all in one piece...with no hand at my requirments and will cover both dog ear areas and some of the side swelling.
I am tickled still yet angry that it took so much to find the good ones. I took in my cami that I had bought on my own. She took it with her and said she would have it altered so I could use it during the day. Being very huge in the hips it just didn't work. She is having it cut off so that it stops at my waist line.
I was so hoping my knee highs would have been in today but they weren't. I am tired of being wrapped. shhhhh I am sleeping bare legged tonight. Oh well hopefully soon I will have all new stuff with no complaints.
0 -
My nose hurts, and it's because of LE.
There I was, pulling on my sleeve when my hand slipped and.....you guessed it.
Which is why my nose hurts, and it's because of LE.
Leah
0 -
LE... the gift that keeps on giving!!
0 -
when i went to the fitter, she was amzed i could get the sleeves on without punching myself! i told her, years of practice does that... sorry ;bout the nose, Leah...hahaha3jays0
-
I got my compression socks today. I have actually had them on since around 9:30 this morning. I only have two complaints as of now. The seam on the bad leg is pressing I guess on a nerve on the heel or it's the neuropathy. Every now and then it feels like something is stinging - burning in that area. On the good leg...lol It is currently tight feeling in the crease in the ankle foot area. I did notice once I got home that they foot area had managed to slide up towards the ankle. So I pulled them back down to my toes. lol I think I will get use to these easy...just not once summer shows back up. Not like we have had much winter anyway...76 here today.
I am beyond tickled with this company. She met me at the LE Clinic today. When she was done she made me really happy and said if you have nothing else to do I could come by the store. She had openings with a fitter for my bras and foob. WOW I am impressed. She had two foobs out for me to try and several boxes of bras. The first one she tried on I loved. The second one I am not sure about but she said it is very comfy once it breaks in...it is cotton. So she is ordering those two for me to try and I will get the foob when the bras come in. Just encase we need to change the size. I am so happy..It has been almost two years with this fluff and make do bra. I want no what to do with four bras.
0 -
Congrats on getting the stockings and bras. I had a surprise two weeks ago regarding bra's, last year we had the local bra fitter at our support meeting and one of the stage 4 ladies purchased 6 new bras, but before she wore any of them she passed away. Her husband brought the bras (still in the boxes) to the support group leader to give to someone in the group and she kept them in her office for several months, not sure how to decide who to give them to. The other week when I was volunteering at the 'wig bank house', the leader came out of her office and asked me and the other volunteer what size bra's we wore. I was the winner and could wear the new bras that were returned. I hate that I only got them because Sherry passed away, but I hadn't worn bras regularly for at least a year because I couldn't afford the large band/small cup that I had to order from the bra lady (high insurance deductible that since my treatment is complete I don't meet).
Sheila
0 -
Shiela sorry about the reason you got them but so glad you were the lucky one!
0 -
me too.. the same..
kitty dog, just for info : what foobs did ya get? foam or silicone.. im always looking for a comfortable set...3jays
0
