GRRRRRRRRR I HATE LE..........
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Ducky, I'm so sorry. It really is a steep learning curve -- and one nobody wants to learn either.
Just thought I'd suggest that masking tape works great on the wrapping, and it's cheap and easy to manage and I never have trouble with it falling off. I sure wouldn't worry about your therapist fainting -- she's already seen it all!
Jo, how's the technicolor today? Hope things are settling back down. That is such a frustration
!Be well!
Bonnie0 -
My LE therapist said swimming is one of the best excerises for LE as it's naturally a compression tank. I have been slowing working back to be able to do most movements in the water. I really feel my breast (TE) when I do breast stroke but it's not bad. It's slow but steady progress. Hot tubs and warm water on the other hand...not so good. Although, I still hot tub but no longer than ten minutes, then do my MLD immediately. It does flare me up but my back loves it. It's all a balance.
Betsy
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I'm new to the board. Can you all give me your best piece of advice....tell me something you wish someone had told you. I'm active, 39, MX on 4/22 with TE placement, 23 nodes. I am already able to lift arms (even node removal side) over my head. I do all normal activities expect life weights. Was going to wait a little for over the head weights. I would love some advice on what is really bad and what you found helpful. I read many sites and there are so many unknowns and I know you guys have good info to share...so share away...
Th,
Ronda
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Ronda, I am going to link the position paper of the NLN on exercise, which recommends slow and steady. You're already almost 2 months out of surgery, but for the first 2 weeks you try and limit overhead reaching.
http://www.lymphnet.org/lymphedemaFAQs/positionPapers.htm
Here's a link to the stepup site risk reductions:
http://www.stepup-speakout.org/riskreduction_for_lymphedema.htm
In general, working the arm to fatigue is a bad idea and sudden increase in activity isn't recommended. We're all different in our tolerance levels--like I can't do therabands without problems.
Knowledge is the best defense here.
Kira
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Ronda, I wish someone would have made a bigger point, or I would have listened more carefully about the need to wear compression garments on airplanes. Also, I got cellulitis and was very sick and undx's for a year and a half, so be aware of your body and trust your instincts, demand best care! hugs terri
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KCShreve: Thanks for the advice. No, I do not have LE, it's just something I worry about in the back of my mind. I have stayed off airplanes since my BMX. Question: Do I get evaluated for a baseline by a PT?
Rhonda, thanks for asking those questions and Kira and Terri, thanks for replying! Very helpful info, all.
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I finally took the time to create a seperate thread about a method I used with a long scarf, that hides my compression sleeve for summer wearing of tank tops/sundresses.
In any case, yesterday while on a day-long happy trip to see the musical, Jersey Boys, it allowed me to completely leave the world of inquisitive/RUDE stares and questions and just enjoy being in the audience and appreciating the show: priceless!!!
(And, Kira, we loved the production!)
The other thread is here in the LE forum entitled:
LeScarfie etc etc.
Here's the finished 'look' the other thread has the specifics:
Hope my idea inspires others here & allows your inner-diva to shine.
Edited to attempt to re-size pic to better effect: LOL
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Faith, thanks for posting the pic, you look wonderful
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Rennasus, hello,
Here's how to find a well-qualified lymphedema therapist near you. S/he will be able to take and record baseline arm measurements, fit you for compression garments to use prophylactically for travel and exercise, show you some gentle lymph massage you can also do preventively, and give you some personalized risk reduction tips.
http://www.stepup-speakout.org/Finding_a_Qualified_Lymphedema_Therapist.htmBe well!
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Thank you, Binney! ;-)
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Just used my lymphedema pump...it is AWESOME!!!!
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I just had a woman on another board ask about lymphedema and radiation. I thinks he's only had a few treatments and developed lymphedema and was told to stop radiation b/c her lymphedema "would only get worse." What do you ladies think? I go for my Radiation consult today and I already have lymphedema....?
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@Melanie IMHO (and I don't mean to upset anyone), radiation is a "life saving" treatment, used to kill the cancer that is attempting to kill you, granted lymphedema is not fun, and iis a progressive condition that will most likely get worse with the rads, but you aren't going to die from this side effect. SO I guess you need to choose between quantity of life and quality of life. I have cellulitis from the rads (brought on due to my lymphedema) and was sick alot thru my treatment (very high fevers) and I did oh so want to stop, but I have two young kids and want to be around, so I continued even though at the time I believed that I might be loosing my arm (that wasn't true, they never intended to amputate, that was all in my head cause I was in a really bad place). I still struggle with lymphedema a cellulitis, for over 2 years now, I dont expect that to ever change, although I still search for "help". It is my new normal, hard to live with, but I AM ALIVE! I hope this helps, you can do this! Have you learned your exercises to help with swelling? That can help to offset the severity of the dema. HUGS Terri in MI
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Finally going to a Urologist today, have had UTI's, bladder infections and blood in my urine, for a really long time. Pray this guy is good. Thanks.
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Melanie-Ann, I also started rads with LE, and it didn't get better with rads, but it didn't get horribly worse either.
I work in rad onc and the other day, I looked up the benefit--and this is for DCIS--rads decreases the local recurrence risk of DCIS and invasive cancer in the treated breast by 69%. For DCIS again, tamoxifen decreased the development of DCIS but not invasive cancer by 39%. Kind of surprised me, as I'm on tamoxifen for invasive cancer.
So, you'd think that I'd look this stuff up more often, as I work for a radiation oncology group, but it did make me realize that rads does prevent local recurrence in the treated area.
LE sucks big time, but recurrence and mets suck way more.
Kira
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Kira,
Did you see this out of ASCO?
Breast Cancer: RNI Prolongs Disease-free Survival for Women with One to Three Involved Nodes
The therapeutic benefits of adding regional node irradiation (RNI) to breast-conserving surgery plus whole breast irradiation (WBI) and chemotherapy outweigh the additional toxicities for women with early breast cancer (Abstract LBA1003). Timothy Whelan, BM, BCh, MSc, of the Juravinski Cancer Centre at Hamilton Health Sciences, Canada, presented data from the National Cancer Institute of Canada Clinical Trials Group protocol MA.20 on behalf of his colleagues during the Breast Cancer - Triplenegative/Cytotoxics/Local Therapy Oral Abstract Session yesterday.
The goal of this Intergroup study was to establish the role of chest wall and regional node irradiation for women with one to three positive axillary lymph nodes. Women with highrisk, node-negative breast cancer were also eligible. All patients with node-positive disease were treated with level one and two axillary dissection, adjuvant chemotherapy, and/or endocrine therapy. The patients were stratified by number of axillary nodes removed, number of positive nodes, and type of adjuvant therapy, and were then randomly assigned to WBI (916 women) or WBI plus RNI to the internal mammary, supraclavicular, and apical axillary lymph nodes (916 women).
A protocol-specified interim analysis of the primary endpoint, which was overall survival, was undertaken at 5 years. Because the death rate was low, the analysis was expanded to include relapse patterns, distant disease-free survival, and toxicity. The efficacy analysis was performed on an intention- to-treat basis and the safety analysis was based on actual treatment. Median follow-up was 62 months. The addition of RNI to WBI alone had a positive outcome on a number of secondary endpoints.
Disease-free survival was improved (hazard ratio [HR]: 0.67; 95% CI [0.52, 0.87]; p = 0.003, stratified; 5-year risk: 89.7% and 84.0%, respectively).
Isolated locoregional disease-free survival was prolonged (HR: 0.58, 95% CI [0.37, 0.92]; p = 0.02, stratified; 5-year risk: 96.8% and 94.5%, respectively).
Distant disease-free survival was extended (HR: 0.64; 95% CI [0.47, 0.85]; p = 0.002, stratified; 5-year risk: 92.4% and 87.0% respectively).
A trend toward improved overall survival was observed (HR: 0.76; 95% CI [0.56, 1.03]; p = 0.07, stratified; 5-year risk: 92.3% and 90.7% respectively). The survival curves began to diverge at about 18 months of follow up.
The addition of RNI to WBI alone was associated with a significant increase in adverse events, mostly of grade 2 severity. Acute adverse effects included pneumonitis (1.3% and 0.2%, respectively, p = 0.01) and radiation dermatitis (50% and 40%, respectively, p < 0.001); delayed lymphedema was observed in 7% and 4% of the patients, respectively (p = 0.004). Patient-rated adverse cosmetic outcome increased over time in both treatment groups; at 5 years the difference between the RNI group (36%) and the WBI-alone group (29%) reached significance (p = 0.047).
In closing, Dr. Whelan stated that the results warrant offering RNI to all women with nodepositive disease. Thomas A. Buchholz, MD, of the University of Texas M. D. Anderson Cancer Center, agreed in his opening comments that the results of MA.20 have major clinical implications and are most certainly practice changing, emphasizing that the benefits of RNI are additional to those already established for WBI plus adjuvant chemotherapy.
Dr. Buchholz characterized the effect of RNI on distant metastases as surprising, but suggestive that RNI will improve overall survival with further follow up and, therefore, the benefits of adding RNI to standard therapy clearly outweigh the risks. Other clinical implications to be considered are that RNI may exclude patients from receiving hypofractional radiotherapy and complicate postmastectomy reconstructive options. Another obvious implication is that more patients will be receiving treatment.
Dr. Buchholz acknowledged the value of RNI, but deemed that the population of "all women with one to three positive nodes" is a heterogeneous group with different risks for relapse, so accrual of additional data to facilitate subanalyses, especially of the group of patients who have low risk for residual regional disease, is necessary before RNI should be made a general recommendation.
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KMMD, Cookie had posted the medscape version of this, so that was all I had seen. I reposted the entire medscape article as not everyone has accounts.
It's interesting as node irradiation comes up constantly where I work--it all depends on if they've had ALND, extracapsular extension, etc. And I agree, it sure beats women up at the time--the supraclavicular field is particularly prone to dermatitis.
I'll have to share this with the head rad onc.
I find the rates of lymphedema low. 7% and 4%--as an abstract, it's not a published article yet, right?
Kira
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Mid 90s today with high humidity. On the inside looking out, but still never regretted having rads. Anything I could throw at the cancer, I'd have done.
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I have not had my surgery yet and i'm leaning towards not letting them take all of my lymph nodes. Will this better my chances of not getting Lymphodema? How many of you had all of your nodes removed?
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kwallace, I bumped a thread on that topic for you: some of us have developed lymphedema with just a few or even no nodes out, others have all their nodes out and never develop lymphedema. The studies do indicate that about half of women with all the nodes out will develop lymphedema over the next 20 years.
There is a recent study on not removing all the nodes if certain guidelines were met, it's on the boards. The tumor had to be T2 (5cm or less) and I believe the number of positive nodes were 1-3. I need to look at the study again.
Good luck with your decisions
Kira
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I agree with you that rate of lymphedema reported is low, it is amazing how that number changes depending on criteria used and time of follow up
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Kate, last year their was an AHQR/CMS technology review of LE, and they gathered a ton of articles, and that's where I discovered that the "gold standard" of a 2 cm inter-limb discrepancy was created by 2 PT's for one study. Yet, unfortunately, the AHQR recommended it be the "gold standard"--with no science behind it.
I've met the wonderful Jane Armer PhD, and she's followed >250 women for a decade and uses multiple methods of measurements, and using the 2 cm discrepancy, at any one point in time, 91% of women qualified for LE.
Using perometry and more sensitive methods, it was around 40%.
So, when I see 7%--I have to think, was this just for the few weeks you saw them?
Hope you're recovering from your surgery, and taking some time to heal and rest.
Kira
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Asking all your advice.
I've posted a couple specific questions, gotten some answers, but I think the big thing is that I'm not sure I'm getting good care. I like the CLT I'm seeing, and she does seem fairly knowledgeable, but I haven't received nearly as much instruction as what I see other people are getting. Granted, my lymphedema is mild, but it also seemed to come on like gangbusters when it started and I've never gotten it completely down. It just seems like we've been waiting for the Solaris nightgarment to arrive and hoping it would be the answer, but it doesn't seem to be any sort of miracle.
My livelihood depends on being able to wash my hands throughout the day, there is no way I can continue to work in my field and wear a gauntlet or glove so I am really anxious about this (Kira, you work in a medical field, how do you do that?). I also just don't know how to live my life without using this arm. My CLT keeps saying I will be able to, but MLD doesn't seem to do diddly, the nightarment doesn't seem to do much, and Kinesiotaping didn't work out.
I have used the CLT locator and it actually doesn't seem accurate for my city, which is out in the middle of nowhere. There is someone listed who doesn't seem to be in town anymore, and I am aware of several CLT's that are not listed. I've done my own digging, and I think if I need to see someone really good, I am going to have to fly. So it doesn't really matter where I go, I guess. Does anybody have any recommendations?
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@Outfield, have you considered a pump that you can use every night? This might help if you dont wear teh garments dueing the day to keep the fluid moving and swelling down. I am absolutely amazed at the results just after an hour at night...and will be honest and say I havent worn my garments lately and dont do my exercises regularly eitehr anymore, I dont have to, this pump is a miracle, you can visually see results so quickly! hugs terri in hot-hot-hot Michigan
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ok...I may sound like a crazy lady on this.
I have a formal function to attend on Thursday. It's a very bittersweet occasion, I will have some very vivid remiders of stuff in my life that didn't go my way, but it is important that I am there.
Somehow, I managed to find a dress I really liked with long long sleeves, long enough to hide a gauntlet. It was the one thing that was getting me through, I was excited to wear it. It was super sexy.
Now the forecast for that day is 94 degrees!!! There is no way I will last in a long sleeve dress and a sleeve, and if I go sleeve free, it is prime puffy weather.
GRRRRRRRR
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Outfield,
If you feel you are not seeing a decrease in symptoms with the therpist you are seeing, it is time to find another therapist. Best bet is if you can find a LANA certified therapist, but that said, it doesn't mean that all LANA certified therapists are good. A lot of us have had to try more than one therapist to find one that is a good fit, and some of us use massage therapists that have experience with lymphedema. When my symptoms kept getting worse with my first therapist, I realized it was time to move on, and it made a huge difference. Hopefuly others will be along to offer tips on how to deal with the requirements of your profession while managing your LE. BTW, I empathize with living in the middle of nowhere and finding good treatment. It's not easy! Best of luck to you...
Deb
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Ladies, it appears that between my fingers on my LE side has begun sloughing. I am oiling my skin in the shower, lotioning after showers and after I remove my gauntlet and sleeve. Anything to be worried about? Last week was my first full week with sleeve, gauntlet and compression bra. Just got the belisse and for a compression bra I really like it. Thank you for your imput.
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Outfield: the key for me is wrapping--I don't find that night garments, and I've tried both Solaris and Jovipak, do much for hands/fingers. I wrap every night--and I am able to get away without a glove at work while doing clinical work. I keep one at my desk if needed when I'm doing clerical work.
Totally agree with Deb, I went through 5 PT's--and actually, I stick with my LMT--who always wanted me to wrap....
There is a new handout we came across, and it is not a universal answer, but it does explain this therapist's version of wrapping:
http://www.srmconline.com/Rehabilitation/Pages/Lymphedema.aspx
Cookie!!!!--what a brave woman you are to go to this function. Can you wear a gauzy scarf? With a shorter sleeved dress? Will you be in A/C??
Christine--my skin in my web spaces does that also if I wear gloves a lot. I just use my old standby--vanicream.
Kira
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I have no idea what I am going to do.
This is sort of a once in a lifetime thing for my husband, so I have to go. I was so excited that the dress had looong sleeves, so I could just wear a sleeve and gauntlet.
The other special dress I have requires a special low bra that always makes me flare.
I'm screwed.
We have to take public transit to get there, but perhaps they will do away with the outdoor reception.
I should try to find a private pay LE who can see me in NYC on Friday.
This is my first summer since I was diagnosed. I am beginning to think that my convention in New Orleans in the fall may be a very bad idea.
I have to be honest, I keep thinking losing weight will help but it doesn't seem to be making a difference. My arm actually looks bigger as the normal arm gets skinner!
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Cookie, I say wear the long sleeve dress so the only things you have to worry about are having a good time and finding a breeze!
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