GRRRRRRRRR I HATE LE..........
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gmafoley, I wonder if your shoulder surgery left some scar tissue that gets in the way of letting the lymph flow.
Someone needs to re-work the Frozen lyrics, so we have a song: Let it Flow...! I wonder if singing would nudge the darn stuff along? Singing with conviction? Singing while taking realllly deep belly breaths, like great singer surely must do?
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My truncal LE was aggravated by radiation fibrosis & scar tissue. Now that the PT has worked breaking that up, controlling swelling with MLD is much easier.
What amazes me is a lecture I saw by a Stanford professor. Wish I could find the site again, but he said the average doctor has a total of 15 minutes education about LE in his 10+ years of medical school. So of course they're not familiar with it. "None of us will get that", right? Sort of like none of us will get CIPN - chemical induced peripheral neuropathy - but 30% of those who do never get any better.
Sometimes it's hard for me to determine if the tingling in my fingers & hands is just the everyday neuropathy or the LE moving along. Sorry for the rant.
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MinusTwo, I think that was Dr. Stanley Rockson. I think if you google him, you'll find that comment on his webpage, somewhere on the Stanford site. It's jaw-dropping to think that 40% of BC survivors get LE, but our medical providers are mostly not aware of the risk, and they know little about diagnosing and treating LE.
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40%???? OMG! That is outrageous that it is so high and so many know NOTHING about it.0 -
Glennie, 40% is what Dr. Jane Armer uses in her presentations, and she's a well respected LE researcher who has the darn condition herself. There are many studies of LE incidence, and unfortunately they're a bunch of apples-to-oranges studies. Diagnostic criteria are all over the ballpark, as are measurement methods and follow-up periods. So no one knows for certain the true incidence of LE after BC, which naturally varies according to treatment elements--ALND brings more likelihood of LE than SNB, although even 'just' SNB can trigger it (I'm in that group). Radiation adds risk, and a few studies say that chemo can add risk, and one researcher-Mei Fu--found that getting a seroma after surgery may add risk. It's hard to generalize the risk. Sigh...................
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Carol, I also read that developing cording after surgery increases your risk too. I had cording and a seroma! So even though I only had SNB and 6 nodes removed, I think those things increased my risk. And I probably should not have started doing push-ups again,,,,,
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Glennie, if you could ever do push ups, that makes you one he** of a woman! I've been lifting with weights, with a slow, progressive approach, and now I'm feeling confident and safe to do body-weight strength and cardio training when I'm away, exercising in hotel rooms. Yet still, floor push ups elude me! I do them standing, hands on a desk or when I have it, a low, solid luggage credenza. I'm so admiring of women who have developed serious upper-body strength. My job makes it absolutely mandatory that I can lift somewhat heavy carry-on luggage into an overhead bin (aka a shoulder press), and I'm short --5 ft 3 inches--so it's usually a high lift. I'm good there, but push ups--they're hard for me to do well.
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Carol,,, I thought I would get back in shape slowly,,, by doing pushups against the kitchen counter! I thought that was slower than the floor,, which I would do on knees! Wrong! My LE set in not long after I started doing them. **sigh**You are great with the weights!! I have no patience for starting with 1 lb weights after being able to lift much more. It sucks!!! And the gym I belong to, has no low weights,, they start at 5 lb. I was doing some low weights at home, but I got so bored. I am doing gentle yoga now. And gardening! So far, so good,,,,,
edited to add: I really must walk,,, need some cardio,,,,
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Glennie, my gym is such a caring place that they invested in some mighty small dumbbells when I needed them. The guys lifted a few eyebrows, but only in jest. If you want to do the small increments at home, look into powerblocks. They are easy to work with and you can find a version that lets you move up in small increments.
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Thanks all. I am just very pissed off about it all.
Sandcastle--I thought I was the only one in NJ wearing a sleeve!!!! LOL Where in NJ are you? I'm in South Jersey, Medford actually.
Honestly I wear it at home in the mornings and then remove it while Im out. I'm getting new garments tomorrow, so maybe I'll feel more comfortable wearing them in public more. I have a black glove now and think I'd prefer a beige color instead and she ordered me a pink camo sleeve from lymphedevas, so I can look badass---NOT. I do wear them out just not to social events, or when I'm out with my daughters. I know I should as I am paranoid about it getting worse. And now I'm worried about the one breast being larger than the other.
Why do we have to suffer while others (and I mean non BC people) can go about their daily lives not worrying about getting their sleeve wet and taking it off and on, making sure its just right. Just want to be back to my normal self, and by normal I just mean no LE!!! I know I should be grateful to be alive, but I truly would get chemo again than go thru this FOREVER!!!!!
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I...Live at the Jersey Shore.....In Brick........I hate people asking What is WRONG with you hand/arm....no matter how I try to educate them...it just does not work.....I go up to Freehold CentraState for my PT which I will see in May.....she set me up with Solaris...great Compression...but heavy...too hot for the Summer.....I do have Lymphadivias....but I feel the compression is not that good for me....but very Cool to wear.....Liz0 -
I have to chime in... I'm in NJ too! Currently wearing a lymphadive sleeve and gauntlet. not happy. But not miserable, that was last week!
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Jen, that is so cool looking!!!!!
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thanks! It was actually a "seconds" so it was half price!
Hey, guess what: no more itchy feet!!! I'm on Femara now. Not happy but at least I'm not itchy! Thank you for helping me feel sane earlier this month!!
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Oh, yeah, I forgot all about that. You are welcome, glad I could help. I have had no SE's with Femara, so I am happy with it.
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when I buy Diva I always buy seconds...Liz
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Jen--looks great! Wish I could wear the gauntlet!! My pt has me in a glove with fingers---it's so challenging to do anything with it--even as I'm typing right now, it's hard b/c it's like wearing bulky winter glove!!! Had a gauntlet, but she didn't want it to go to my fingers.. Right now it's just in my thumb and wrist. You are lucky to have the gauntlet! at least your fingers are more mobile.
She did say I can just wear the glove if I really wanted b/c it goes way past my wrist, but I do wear the sleeve with the glove most days and when exercising. I'm always cooking or cleaning and preparing foods or doing laundry--it's such a hindrance! I'm sorry ladies for being so negative.0 -
So my LE therapist told me that the pump is for those that MLD doesn't work for. That the pump takes at least an hour a day, and that you should still do the MLD and wear compression garments. Also, she feels that you will end up with more LE issue if you have reconstruction. I did have two little, tiny punch biopsy's by my sternum, on the BC/MX/LE side. I had a 2 hour drive home from the doctor, by the time I got home I had a lot more swelling in my hand and fingers than I had before the biopsy. She said that often happens.
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Jen.....Can you tell me what Length you have in your Diva Sleeve?? And do you have trouble with it staying up.....Liz
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Sandcastle, I get the regular length Diva (my Jobst sleeves are long) in 20-30 compression. I did have trouble with them staying up - then I got the one with the silicone band and I no longer have that problem.
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Jen.....I guess you use your Diva for when you go out?? And your Jobst for everyday?? The compression on the Diva is not that great for me....I also use 20-30 but short........with the Diamond Band......but my daily sleeve is Solaris Exo-Strong....great Compression...but too hot for the warmer months...Liz
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Liz, I think I'm lucky - my LE is very mild...stage 0 I guess.... I've only ever had a little swelling in my wrist. So whatever I do is mostly preventative. I wear my fun sleeves when I'm dressed for work unless I'm in long sleeves then I just use my jobst. I am not sure how I will handle the summer..... I'm thinking of getting a Solaris for nighttime wear and not wearing a sleeve at all during the day if I can avoid it.
My cording bothers me more than the LE at this point. (knock on wood)
Jen
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I went in for a visit with my PS and got on the scale - I have gained 10 lbs this month!!! WTH.... How did I do that? Could part of that be swell or was I just eating all of Binney's chocolate (no, I was being good) . Anyway, guess I will be starting a eating and exercise program soon, now that the nerve pain in my breast is gone. Thank you Dr. K. You did a great job making me smaller! - I do have an in-office revision surgery in July but doing well 3 months PO. [except for the weight gain].
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Jen....I use BiaCare for night compression....it is very hard to get through the night with a sleeve....I am also stage 0....but last summer I developed a Blood Clot on my index finger on my LE side.....so I really had to get serious....Liz
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Gma, I'm so glad you are doing better. The pain is gone,, or at least minimal? Glad that you had a good PS!0 -
Hi Liz, is your BiaCare a sleeve or something else
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Jen....It is a Sleeve.....got it from Lymphadema Products in NJ......cost Like $150.00 Compared to Tribute which I believe is about $400.00 my Therapist said She does not like to spend other peoples money and it works VERY good.....at CentraState they loan you sleeves for Day and Night to try before you purchase....they did have the Tribute and I tried that one...it was good...but then I bought the BiaCare and that was BETTER...much easier to sleep with....but any extra on your body is a challenge.....Liz
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When I needed a replacement, my insurance denied coverage of a Tribute, even though they'd paid for it two years ago. So like sandcastle, I changed to a Biacare chip sleeve to save a lot of money. Solaris sells something called Caresia, which is also less expensive than their Tribute, and which comes in stock sizes like the Biacare product. But Caresia does not have an incorporated gauntlet, and it needs to have bandaged wrapped over it for a snug (i.e. effective) fit. The Biacare sleeve comes with a spandex over-sleeve, which is necessary to make it fit snug to the arm, and it also has the built-in gauntlet. I loved my Tribute, which is custom fit, and I find that the Biacare product is bulkier and not quite as snug in certain spots as my Tribute, but that's understandable as it's an off-the-shelf product. Overall, I'm quite pleased with the Biacare, and my experience with both the Tribute and the Biacare chipped foam sleeves is that I can go to bed with an arm that's a mess--achy, tingly, burning...and wake up with minimal or no symptoms. For me it's a wonderful way to get the benefits of nightly wrapping without having to take time to fiddle with the wraps and the wrapping process.
Funny thing, too, is that when I looked into getting Biacare, I learned that the company is located 15 miles from my home. They don't sell at retail, so I had to buy from a mail-order vendor, but I do like supporting local companies, so it was another reason to make that choice. The folks at Solaris are fine, fine people --I've had the pleasure of getting their help on a lymphedema advocacy project. Both companies have our interests at heart.
Isn't it frustrating that the whims of insurance dictate how we are allowed to treat our medical conditions? This is a good reminder of the need to call and pester our members of Congress to support the Lymphedema Treatment Act, designed to take some of this garment frustration away.
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Carol....my insurance does not pay for garments....so I am on my own.....I guess it is just life....I don't get upset over it...Liz
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Well, I caved!!!! I am so tired of always hearing how bad I need to wear compression garments. I went for a fitting this weekend with a CMF and bought a bra and foobs. I wore the bra all day today and already hate it!!!! Those of you who wear these things 24/7, I applaud you. The lady that owns the boutique I went to is a 25 year BC survivor, but now has bone mets. She had on a sleeve and bra and when I asked her how long she has been wearing her garments she told me for 23 years. Really?? You have got to be kidding me!!!!!
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