GRRRRRRRRR I HATE LE..........
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ADVICE?
What would you do ?
Hi Ladies,No real thread for this topic so I jumped in here because so many ppl. GRRRR when it comes to LE! :>)
As so many of you know, I had some concerning issues last yr , where a "mystery rash" complete with swelling apeared on my chest ( V neck area) within a week of a mammo. (MAY 2013) DRS are totally stumped. Lasted many weeks , faded and has flared a few times, but not that much. Around that time, I went to a waterdance class for BC ladies (that I LOVED) and chlorine was *initially* thought to be the culprit. It was not, BUT I did think the exercise may have played a part. ( Who knows for sure...many drs., many theories and many and tests later , nobody really knows and it HAS flared when I have been FAR from a pool!) I am personally convinced it was my truncal LE, most likely set up to flare by mammo squeeze...
OK, here's the deal...having a 3d mammo on MAY 5 (UGH)
Waterdance starts on MAY 1.
Do I go ?
Husband says I am crazy not to ' just live my life" and see what happens.UGH.
Think I want the waterdance class more than the mammo btw :>)
Would opt for a different test but had breast density last mammo so the 3D mammo is best for that.Do I go to class MAY 1st ? Do I skip it/all classes ? Stessing already and really feeling like skipping the mammo altogether, truth be told!
Just looked at my signature today and saw MAY 1 was when I had my surgery - no wonder all this angst all of a sudden an a return to the boards where I get so much support.
Thanks for any advice at all- what would YOU do ?
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I would start the water class and see how it goes. If you are doing fine, then I would reschedule it for the middle of May. A couple of weeks want make much difference.
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gee, I would also do the water class and be sure to shower with your usual soap ALL OVER soap immediately after
I am not so far allergic to chlorine but am allergic to a ton of chemicals so concerned and taking cautions
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Purple, I am SO GLAD to see you back here! I had been worried about you for a while, asked about you, no one seemed to know where you were, so thanks for coming back! I want to weigh in on the waterdance dilemma: I think your heart knows the answer, and I think it is the waterdance. I agree that you could even reschedule your mammogram for a month or even 2 months later, as long as you get it within a reasonable amount of time. How many weeks is the waterdance? You could do that, take a week off, then do the mammogram to allow for all that lymph fluid to adjust.
Linda, have you asked for a discount for your garments from your fitter or where you purchase them? I had to change insurance companies this year, and it doesn't cover as well as the other one did, so the owner of the shop where I purchase my custom sleeves gave me a discount. Also, can you get your measurements and get a better deal from the online retailers, such as BrightLifeDirect? They are less expensive for many things, they have worked with me very well and have a great return policy, but they also do some custom stuff, so if you had the measurements it might be less expensive.
I have had a little improvement overall once I got the fitter to relax the wrist of my sleeve by a full 2 cm!!!! Now my hand and fingers don't swell, the arm is in the best shape it has been in for a year, and I don't have to wear a glove all the time. I truly think the wrist being too tight was what kept things flared up for so long. I am at the point where I can actually go without a night garment once or twice a week and it does not flare up so badly - I am able to get the extra swelling down with daytime sleeve with or without glove. Also have been able to go to dinner and theater without glove or sleeve for a few hours, wear my jewelry. I am very careful to be sure to use night garments religiously then. I still hate LE, but I am finding a life beyond it, which is a huge improvement from last year. Thank you all you wonderful ladies who were so supportive and informative! Especially Binney and Denise - you are the best!
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I think your heart knows the answer,
You're so right! Why am I so conflicted and honestly, I didnt even think about RE scheduling the mammo ( was closer to skipping altogether :>)
Done deal.Thanks, ladies, you are the best ....got my new bathing suit today!
Laurie
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purple. enjoy!
for me , the strokes of doing laps.....helps me mellow out and so good!]
hope you enjoy the same
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btw purple, your link just took me to main sears page. in case anyone is interested, could you post an item number syle number or such?
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purple, good decision! I am loving the pool at the Y. I run, walk, do exercises. Good luck with that and the mammo, too.
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Thanks kareenie ...sorry bout that.
Actually, I changed my mind on that suit so I'm glad the link was broken! Here's the deal - it was a tye dyed tankini. Seemed like a great idea b'cuz it had nice wide straps just like a tank top .. and was not a V neck but a scopp, only not a bit low. Still would be okay for the backyard pool I suppose, but I realized - this is NOT a suit you can get in and out of quickly. Cannot step out at all. JUST go overhead. Between my LE arm and the right arm recovering from frozen shoulder it was a real struggle off the rack. Now imagine getting it off when wet (YIKES)
I ended up getting a 1 pc suit 2 sizes UP to be sure the arms dont get constricted... just hope I don'[ have a wardrobe malfunction in the pool :>)
For anyone who is interested, try that link and browse around as ALL of Sears suits are 55% off this week.Thanks again to everyone for their/your help - I so appreciate you!
BTW, I can't swim
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wow..for a grrrr thread you gals have really good ideas!
Dawne. I live on avocado, it is my staple and saviour. It keeps me full for 3-4 hours. I pack one for lunch with a couple rice cakes and a thin slice of onion (just enough to not give me onion breath) low salt and pep to.
Kitty, Have not tried skinny popcorn.Goodness...isn't regular popcorn skinny enough. Heavens above ...the only skinnier cal wise item you can get other than popcorn is.....by eating air accidentally...then you just burp it out! Sorry.. Me cheeky tonight!
Purple.... There is no way in this world I could eat popcorn without salt. I know..me bad ...but I just put on enough to say I salted it. As an alternative.... Franks hot sauce on popcorn can really wake up your mouth for a good mouth party!
Can you give us the garbanzo bean recipe. They are not my favourite but do the trick to keep munching to a mininum. I do like humus with vegs. I understand mrs. Dash has no salt in it. Please correct me if I am wrong someone. I used it in my salad dressing for years....I hope it has not salt. Comes in many flavours.Carol ,you know I could never give up the gelato place we visited together. the lime flavour is dairy free and really puckers you up for a power walk. Sheesh come on..who can live without that italian's homemade gelato. I try not to walk into his store until mid summer because once I go in I am hooked!
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Doc suggested when its time, after I get the nerve pain issue settled down with acupuncture, to go on a "plant based" diet of my choice. But take it slow. I went for my 2nd acupuncture treatment yesterday, did my MLD before bed, and woke up 3lbs lighter than yesterday. Hmm maybe some other SE's I wouldn't mind
. I did find out something interesting about pain though: http://www.neuroplastix.com/ Your brain grows more pain receptors take over your other brain cells in chronic pain. Acupuncturist says I need to break the cycle and kill off those pain receptors. If you go to the patient side of that site it has lessons on how pain works. First step is to imagine yourself taking those heightened pain receptors in your brain and kill them in whatever way you want. Going to be an interesting ride, but this pain center that does the site has been researching this for a while. Just wanted to keep you all up to date with me. So far, I have had only minor swelling in my upper arms and breast, but I think that is more from me not being compliant and the weather, than the acupuncture.
Edit: She also referred me to this site http://www.itmonline.org/arts/lymphedema.htm for herbs used for lymphedema. They make some herbal combinations she is going to get me to try. I just needed to do a bit of research so that I know there was nothing in it I'm allergic to.
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Purple.... There is no way in this world I could eat popcorn without salt....
LOL! I should have known HUGZ :>)OK, as for the garbanzo beans ...simply rinse a can of them under cold water. Spraya small pan ( like a cookie sheet) with oil . Add cayennne, pepper, Mrs. Dash (?) and other seasonings to taste ( garlic powder? NOT garlic salt :>) and cook on 375 for app 40 mins, tossing or flipping@ 15 mins.
I love them , but admit, I would prefer my oven was already on for some orher reason and would just add them as an aside for later.
Give it a try!GMA
main benzopyrones that has been of interest in relation to lymphedema is coumarin.
Please be careful...this has been known to cause serous side effects. I looked into horse chestnut before my LE, but I know that too can cause problems. Even licorice can INCR BP. I dont want to pop your bubble, but be very careful with these herbs.
Off to the EX forum to aska Q about LIVESTRONG/PAL.0 -
GRRRRRRRRR! Will some of you ladies consider visting the website link below and click the " CONTACT US" button and nicely inform them that soem of us who " just had LX", DO INDEED have to worry about our arms ?
See why I trust so few ppl . when it comes to exerise ?
Check out this website :
http://www.strengthandcourage.net/dvd/testimonials.aspxOn the website, The DR who helped develop the PAL program promotes this DVD. Fine.
I looked at testimonials for the DVD,and this one really bothered me :
“Even though, lumpectomy patients don't need to worry about their arm, research based evidence tells us, all breast cancer patients should exercise to decrease the chance of recurrence. I have not received any negative comments about the DVD. Usually it is very appreciated. Thank you so much for providing these CDs for my patients.”
-Lee Ann Dobson,Clinical Coordinator, West Penn Allegheny Health System=================================================================================
Hello ?! Wake up health professionals ! I "only" had LX, SNB and NO RADS! But LE came a knocking on my door!
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hello all. Longtime poster on other threads, first time here.
7 yrs with LE, first cellulitis episode this week. No obvious skin breakage or bite. Three days into antibiotics which are definitely helping.
My concern...the first areas are looking a little better, but two new areas outside original area have popped out. Have others experienced this?
Thanks for your help
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Marlegal - I've, luckily, never had cellulitis, but I would think that if it's still popping up, and you're on antibiotics, you should contact your doctor asap, maybe it's not the correct antibiotic. Take care, and let us know what you find out.
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marlegal, stubborn cases often require antibiotic infusions instead of taking the pills. That can mean an in-hospital stay, so I second Linda's thought--get on the phone with your doctor. With luck there will be a strategy to nip any escalation in the bud, so you don't end up as an inpatient. Good luck with this!
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UPDATE on the Waterdance for BC:
My exercise in the pool yesterday REALLY hurt my knees a LOT ( Have patella femoral syndrome) and VOILA...that mysterious' redness ' in the V neck area flared just a bit. Blotches of red and a tad of swelling. I have NO doubt it is post exertional truncal LE flare. I am anot accustomed to working my upper body/'chest.This, despite the fact I tried to go very slow and easy and spent 30 mins in the pool rather than the hour. The instructor said it was fine to modify or skip moves, yet she kept pushing.
ugh.
I think I need to forget this program. What I LOVE is the 'idea' of being able to do it, but I firmly believe it just overloads my lymphatic system. NO other area got blotchy or red. It was not the chlorine. I have a feeling if I " gave it my all" and went for the full hr. I would be red, swollen mess all over my chest today....just like I was last year
oh well.
Changed my mammo to JUN 1 to get it out of MAY. Then my husband reminded me that was his cancer surgery date ( What are ya gonna do ?! :>)
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Purple, I just walk in the pool and do a few exercises on my own. I don't love the classes, either. I feel pressured to do it all.
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I would love to be able to do that jeannie!
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purple, our pool has adult open swim/lap swim, we can do our own thing then, also during lap swim, you just stay out of each others way! I meant during the water aerobics you can do your own thing too, you just need yo stay on the fringes of the class 😃
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purple, I hope things ease for you. I gardened too much today. My arm is sore, not smart of me.
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THX linda and Jeannie
That wont be possible here. The woman has a grant from Rays of Hope to conduct " WaterDance".
Does anyone know how to post a pic here ? I have totally forgotten! I only have a few small blotches of red ( knock on wood ) and a little chest/neck area swelling which doesnt compare to the substantial area of brilliant red of last yr. when power walking , after ammo and after pool exercise, but I would love to post a pic and see if anyone can relate to this .THX for any help on posting.
laurie
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click the little landscape square. then click choose file. Click on the jpg and submit. It should go.
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THANKS GMA!
Sorry about the large size here... no clue what I'm doing.
Ok, it's officially back. The redness can be tolerated , but the ' lines' indicate pockets of swelling.This happened after waterdance class I was dying to start ( GRRRR) and is now getting worse. Came with a 3 day headache . Has anyone EVER seen LE do ANYTHING at all like this ?
PLEASE reply with any thoughts whatsoever. This mystery rash has driven me crazy once, and here we go again.Thank you, ladies.
Laurie
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Purple,
Well doesn't that just beat all! It certainly sounds like LE but geez, no wonder you're going bonkers with this as it does seem rather odd/different. The lines indicating pockets of swelling, yes, could be LE but I can certainly understand why someone might think it's an allergic reaction. Swelling or welts, it's kind of hard to tell which is which. Could any of your other health issues be weighing in to this mysterious rash combined with LE? Was the water class your first time doing upper body exercise since last year?
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YES!
Water class was indeed the first time doing upper exercie since last yr. which is why I think it is LE related. Then, my husband mentions chemicals in the pool, and thoughts wander... Yes, looks like welts.I dunno'.
Last yr . my endo dr. tested me 2x for carcinoid syndrome ( results took forever) so it is very concerning.
The pool, mammo or exercise seemed to trigger it ( last May!) and it was there ALL of May. It never fully resolved all summer. It would even be 99% gone and then flare with no apparent reason, making me stop all MLD, compression and exercise since that time.
I did try MLD the night before last (when I had just 2 small patches) thinking I might ' catch it early" if it was a LE flare so...did the MLD flare it more or just coincedence? Who knows ?
Red herrings everywhere.
I so hate this !
Thanks for taking the time to reply.0 -
Purple, sent you a PM.
Binney0 -
Purple, so sorry about the rash and swelling. It sure is hard to tell what to blame but here is a thought...I swim 4 or 5 times a week in the gym pool which of course has tons of chlorine and chemicals. I also have tons of allergies to all sorts of chemicals and meds. Not to mention my mild LE. I always shower immediately after swimming and use my old standby Dove soap all over!
I wash my hair also with a chlorine removing shampoo as if I do not, I smell of chlorine. I really believe it helps.
Now regarding going back to the aqua class for the first time in a year.....hmmmmm, maybe you should have eased into the class, say a half of the class to start. I broke a bone in my foot and today was the first day back on the treadmill....I did only 10 minutes so as not to shock the stupid foot.
Ease all a bit maybe? For now, not sure what to tell you to do, hoping in improves
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Thanks, proud.
I did shower well afterwards as soon as I got out.
They were in the pool 90 mins.
I left after half hr. and this was a 'mild' workout.
THX Binney
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Maybe the workout (any upper body workout) is simply too taxing for your lymphatics. I sure hope this progresses no further. You do not need a repeat of last year!
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