GRRRRRRRRR I HATE LE..........
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Jo, hello!
I have truncal LE that over several years moved to abdominal LE as well, and then showed up in my lower leg. I've been wearing knee-high compression stockings on that side, but lately I notice the upper leg is also sometimes swollen, so I ordered a thigh-high to try. Have you learned Manual Lymph Drainage for the abdomen and leg? Good skills to have in your LE toolbox. Hopefully what you're dealing with will be readily helped by more activity, but if not please know it, too, is manageable. The Lebed opening is still my go-to for both management and flares, including arms, legs, thunk or abdomen.
Knowing you, you'll be on top of this soon! Gentle hugs,
Binney0 -
AuthorSpot, hello,
I sure wouldn't pretend to know what you're dealing with, but since you're just asking about possibilities, it isn't unheard of for some tumors to block lymph flow, resulting in a temporary swelling problem that improves when the blockage is removed. For now, I'll be looking forward with you to cheering biopsy results and smooth sailing moving forward. Keep us posted, please!
Gentle hugs,
Binney0 -
Jo, I'm not sure what you mean by your therapist showing you MLD for your "right side swelling," because even if the swelling is only on one side (mine is too) the MLD addresses both sides of the abdomen. Especially important when you think of where you want to move the lymph fluid to. With a full abdomen routine you can move it to the opposite groin nodes so it doesn't end up in your swollen leg. Abdominal MLD starts just like arm or chest MLD with clearing the nodes in the area where you want to direct the fluid to. Can you make an appointment with her/him and get a tutorial for an MLD that will help clear both your abdomen and your leg, without clogging the trunk or arm? You'll need to direct fluid to your unaffected leg in order to avoid moving it upward toward your underarm.
On the exercises, don't overdo on movements that cause pain, because pain brings more lymph fluid to the area--makes sense because the lymph fluid is a "garbage truck" that's supposed to carry away any damaged cells or other "junk", so it responds to calls of pain. On the Lebed tape she often says, do such-and-such "if you can do that." So, yes, modify any movements you need to and don't set yourself up for pain.
Yep--Grrrrrrrrrrrrrrrrrrrrr!
Binney0 -
Wanted to share this info since one major hospital is saying we are no longer at risk with blood draws. Pooh Pooh.
Here's the latest seminar posted on line from Dr. Stanley Rockson at Stanford. It's an hour & 30 minutes - but I thought really worth it - even the questions at the end.
And here's a short summary. Long, but shorter than watching the seminar/lecture if you decide it doesn't apply to you.
5/30/18 talk at Stanford - Center for lymphatic & venous disorders
Diagnosis, treatment & research
Dr. Stanley Rockson is a guru -Only half doz other docs in the US. You may have seen him on NPR
Still true - 1/2 the docs in North America have between 15-30 minutes of their entire medical training.
Fascinating new research since the last seminar online in 2012. But scary what as he tells what most docs will say if you go to them with problems.
Most important to PRESERVE working lymph movement which will PREVENT progression
ANY injury to the skin - cut, burn, insect bite, rose thorn, small scratch. ANYTHING that traumatizes the skin and needs a wound healing response can bring on LE. Including pressure changes in an airline. And he talks about locations over 5000 ft.
10 million people in the US have LE. 90 million world wide
With breast cancer - chances 15-20% of developing LE
90% of the problems develop in the first year but risk never goes away.
So after 2 years, you probably have 2% for the rest of your life. How much you want to work on preservation & prevention depends on how much a gambler you are???
If you get past that 1st year, statistics show you may not be prone to be pushed over the edge to progression.
But if you're in the 1% - do you want to take that chance???
With only 1-4 nodes (like SNB) you have only 1/4 of the risk - but you can get LE with only ONE node out
You have to determine what you are willing to risk.
Yes are finite risks with surgery on parts at risk - even if LE is dormant or sub-clinical. Weigh the benefits. Even carpal tunnel surgery
New bio-impedance surveillance - if treat REALLY early, can reverse the problem
Coming - Biobridge implant at time of breast surgeryAND FINALLY... here's the link to the lymphatic network. Select 'resource downloads' on the right for TONS of facts.
https://lymphaticnetwork.org/
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Just hopping on to try to get out of my system how incredibly angry and sad I am to have lymphedema, and how I'm struggling to come to terms with it. Only three nodes removed, not overweight, did not do anything to cause it other than having breast cancer and multiple surgeries. It's just not my nature to give up, and I want to cure it, which I understand is not possible.
I realize I have so many reasons to be thankful with my diagnosis, but I am so jealous of people who are able to move on and forget about their cancer. I'm reminded every single day. My lymphedema is not severe, but it still impacts what I wear and what I do for the rest of my life. Oh breast cancer, you are a horrible beast.
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Has anyone had trouble getting a provider to respect your wishes, perhaps contrary to "their policy". I have lymphedema in R- arm, due to a new cancer in R-axilla. Prior TX for cancer in L-breast included 2 node removals both times. 3 techs with 3-4 pokes each could not get IV into R-arm for January CT. I requested they use the left arm, since no swelling there, and to please contact my oncologist. They refused, since lymph nodes had been removed on that side. They finally used an ultra sound guided "deep" IV,which went very smoothly.
Ibrance and Arimidex. Supplements include Mg, D, biotin, C, Turmeric (Curcumin), Glucosamine-Chondroitin, BoneUp (multi with Collagen), Thorne (another multi), Melatonin (at night). Self-massage for lymphedema as well as therapist. Acupuncture.
2009 ER+ left breast. 52 yrs. Lumpectomy, Sentinel node removal, negative. Radiation 6 weeks, tamoxifen 5 years. Dense lumpy left breast, normal right. Acupuncture offered at facility as part of integrative medicine. It really helped with anxiety/stress during radiation treatment.
2016 ER+ left breast. Probably a new cancer, but unknown. 4 rounds TC Aug-Oct 2016, Bi-lateral (my choice) Nov 2016, no reconstruction. 2 sentinel nodes remove, negative. Cold Capping using Chemo Cold Caps (DIGNICAP not available). Anastrozole 1 mg starting May 2017. Joint issues noticed immediately. Stopped Anastrozole after 3-4 months due to joint stiffness in. After several months of no AIs, fingers were feeling better. Started tamoxifen March 2018
10/2018 noticed stiffness and some trigger finger again. Was eating meat a lot more (daily) than normal. Usually 1-2 /wk. Have cut way back on the meat, seems to help, but one finger still very prone to trigger finger. Trigger finger seemed to be getting better, but now 4/2019 seems worse, is it the break from added turmeric to meals?
6/18/2019 Noticed Swelling in R-arm, opposite side from where lymph nodes removed. Could have been swelling earlier but wearing long sleeves. Ultra sounds for clots, Trip to urgent care. They did ultrasound, concerned that there might be a clot, there was not. 7/2/2019 lymphatic therapist recognized that there was something very wrong and sent me back to the DR.
8/2019 CT, Breast/chest, neck/thyroid ultra sound
9/2019 DR ordered biopsy, said it could be lymphoma, cancer, benign lymphatic. Biopsy R-axilla. Cancer. Genetic test showed no known markers (20+ looked for)
9/29/2019 PET scan, no indication of spread. Arimidex and Ibrance prescribed to shrink tumor prior to surgery, if needed.
10/2019 – Stopped Tamoxifen. Started Arimidex and Ibrance. Brand name Arimidex so far does not seem to have the SEs that generics did, but stiff/trigger finger on left middle finger returned.
1/2020 CT showed tumor in Axilla shrunk (hooray!!) from 2.3 to 1.1 but picked up something in lower bowel. DR consulted a DR I saw in 2011 who compared it to 2011 image, said they had not grown, but one has changed and was starting to obstruct.
2/14/2020 Happy Valentine's Day. Surgery removed to remove, waiting for pathology. 2/25/2020 – Pathology. Not cancerous. Hooray
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BlueGIrl - hooray - B-9. Yes, I fought with 5 different docs & 3 hospitals until I finally found one that would do blood draws from my ankle. Funny - it's the doc in charge of transplants & blood donors who said he would do it. It's a hassle every 6 months, but glad to have that option.
As for shots, most docs don't have/keep the drugs on hand anymore. I finally found a Kroger grocery store has a little cubby behind a panel and they will do shots in my hip or butt. Before I found them, I paid $200 to have the old shingles shot in my hip at a compounding pharmacy/stand alone infusion place. Now Kroger does flu, pneumonia, shingrex, etc. My Gyn will do the Prolia in my abdomen.
I have breast & truncal LE. I do let docs take BP in my "less" effected arm ONLY IF they do it manually. For things like colonoscopy or cataract surgery - they had to do the IV in my ankle and the BP on my calf.
SuQu - I understand your anger and am so sorry. Yes, we have to be aware every day and it certainly effects what we do & what we wear. I'm mostly comfortable with a WearEase Sydney compression bra. The front has a deep "V" so I can wear most of my scoop neck or summer tops, but it still comes up enough under the arms and the back to give me support. Fortunately - so far - I only wear sleeves & gauntlets for flying or continual repetitive actions. I was so grateful to have a supportive RO who got me to an excellent LEPT for initial treatment & training.
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Minus, Thank you for your response, and thank you for consistently helping so many with advice and experience. I had to convince my doctor to send me to PT for ROM after my re-excision, then for LE. She told me at first that I did not have LE (because apparently I was unlikely to get it, but to her credit (and because of my persistence), she did eventually send me to PT. I was less than impressed with the therapist, mainly because she gave me some Dos, Donts, fitted me for a sleeve and some exercises. And that was it. Two visits. She agreed that I have slight LE in my side under my armpit, but felt it wasn't severe enough to treat. Well, I'm glad it's not awful, but I was hoping for something more aggressive as far as treatment goes. Oddly, softer, more “compressing" bras bother my side and make it swell more than the underwire bras my PS wants me to wear, post exchange surgery. Still working on the bra thing. I will look into the one you wear.
And don't get me started on the insurance issue. My LE is caused by my cancer and treatment, so under my policy, the PT should be covered 100%. (Or that's my way of thinking). I never could get anyone to code it properly, and when the bill became overdue and apparently would threaten my good credit, I just paid it. My insurance still paid some and honestly, the time I wasted fighting it would have been better spent working and making money. But frustrating!
I've been looking for other options for LE treatment, and have not been able to find much. There is an NCI hospital in my city, so surely they have someone specifically for LE, but so far my online searches have not identified anyone there. I will not give up, though. Thanks for listening to my frustration.
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I have had cellulitis 13 times in 5 years. Twice in the last 4-5 months. My healthplan insurance providers were not too helpful when it came to resuming compression garments. So I asked an excellent private pay PT and her rule of thumb is to not wear any compression garments while the infection is clearly active (rash). When my cellulitis is treated at home via Keflex, I wait for at least a week if not the full 14 days of the Keflex before putting my garments back on.
But here is my issue: I tend to immediately gain weight when I get cellulitis. My latest episode in the last 30 days was no different. My arm and abdomen/trunk BALLOONED and I am so physically uncomfortable!!!! I tried researching lymphedema + cellulitis + weight gain and have come up with zero. I don't know what the heck to do about this problem. I am already fat so this phenomenon is very distressing.
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SuQu31m - I seem to have chronic LE, goes up/down. From what I've read, compression sleeve glove seem to be the most effective treatment. Massage has some benefit as well as do compression pumps. Link for home self-massage. India Lymphedema Foundation, and Link to StepUp(trying to get lymphedema added to Medicare). One person who has LE in arms and legs rcommended this book "The Compete Lymphedema Management and Nutrition Guide" Jean Lamantia RD and Ann Dimenna PT CDT. LE has now suggested compression pump for home, measurements are always slight lower when she uses one in office. Fortunately my insurance has coverage for lymphedema treatment and supplies. Therapist has strongly recommended that I "stock up" as much as possible on supplies before I am on Medicare, because even if I keep my private insurance, they won't pay anything if Medicare does not, and Medicare does not cover lymphedema supplies/devices.
https://www.youtube.com/watch?v=sS_WzAdfcSk&feature=youtu.be
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Thank you, BlueGirlRedState, for the tips and links. Interesting to know that about Medicare. What in the world is that? Are we miraculously cured once we reach 65????? I do have coverage for two sleeves per year now, but they are still expensive. I think I likely would be covered for a pump, but don’t think I am at that point yet.
What would I do without this site and all you wonderful women?
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If my LEPT - associated with a major hospital - orders my sleeve & gauntlets and I pick them up from her, Medicare pays for them.
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Please my flexitouch pneumatic pump doesn't pump the lower half of the breast where the swelling is more concentrated neither does it pump the axilla. I have trunk and upper limb garment. The trunk is working fine even though I noticed that it works more on the groin of the unaffected side than that of the affected side. The chest garment is always hard to put on for it to lay flat on the shoulder and touch the upper chest. I don't want the unaffected breast to be pumped but that's what the pump does. Two trainers from the company tried to help set it up but I know something still isn't right. I called the helpline but nothing came out of it. Please any suggestion to make it work on my breast and for it not to stimulate the normal breast? I watched videos about how to put it on but the garments used in the demos doesn't look exactly like mine.
Thank you.
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Sorry - I don't know anything about the pumps. Hopefully someone w/more experience will come along soon.
Still - what difference would it make if lymph is also being moved in the unaffected breast? I can't imagine that would do any harm.
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I'm flexitouch and now so this is a voice message. I wear my swell spot wrap under my arm piece. My lymphedema therapist instructed me to do that and it works quite well . Check with yours first though .
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SuQu31 - I do not know anything about Medicare and how/if it works with my private insurance. Do not know even who to ask, and it probably varies with each private insurance. You think it would be a simple question, but nothing is simple about insuarnace. I have 2 1/2 years to figure it out, and it could change by then. LE therapist strongly advisedme to stock up on sleeves/gloves while private still covering some of the cost. I think I get 2 pairs /year. For some dumb reason I am onky allowed to pick kup one sleeve or one glove at a time, because that is what insurance requires. I can go back the very next day and get another one. She said Medicare does not cover sleeves/gloves, but I think she said it does pay for some LE therapy. She said the pump should last for years. Hopefully there are not other quirks with how Medicare and private interact.
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Minustwo - can you give the details of how your LE therapist orders for a patient and has MEdicare cover them. My LE is associated with a major hospital and has Medicare patients. I'm sure she would help them by doing this if she knew how.
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BlueGirl - Essentially you are correct. I am on traditional medicare - which of course if different from the advantage plans. I was able to get a couple of compression bras paid for in the beginning. I had a prescription with the proper medicare code and Nordstroms billed Medicare.
I'm sorry I don't know how it worked that my LEPT ordered sleeves & gauntets & gave them to me with no billing. She was associated with a major hospital and I think probably the hospital just ate the cost and gave me the sleeves twice a year. I haven't seen her in several years so no way to ask, but when I got my last pair she said they were told I'd probably start getting a bill for the sleeves. Even at that, I wouldn't have cared because she measured so carefully each time.
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are you okay
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Post deleted since spammer's post I was responding to has been removed.
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I'm having trouble with this thread opening at the header instead of the last post. Also it shows there's one un-read message, which is not true. So I thought I'd post to see if it would break the 'jinx' before I sent the MODS a PM.
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Happy Mother’s Day! Wearease has 30% off with the code MOM30 good until midnight! I ordered 3
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Please has anyone seen improvement of breast lymphedema with dry skin brushing? I would like to know if it truly works. I just ordered some brush from Amazon.
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I have never tried the dry brushing. Let us know how it works
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Jo, are you using any kind of abdominal compression? So frustrating!
Hugs,
Binney0 -
Jo - so sorry you couldn't get a Covid test. I agree, they certainly aren't available. Hope your daughter can get a test if only to rule out Covid so they can move forward with some kind of treatment. Glad to hear you're feeling a bit better. Oh the joys of LE on top of everything else!!!
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Jo, the beauty of the Lebed program is you can start easy, and even just the 15-minute opening helps with moving fluid if used consistently. I too quit it, with no excuse anywhere near as compelling as yours. Just got tired of doing it. I've started back now and I'm finding it helpful (also nice because I no longer feel guilty about NOT doing it!) Hopefully I can continue to hang in there with it, since I do much better when I'm consistent.
The COVID test situation is certainly confusing, no? All this talk of how available it is, and still no way to get it. Hopefully that will soon be remedied, since it's crucial to being able to track the spread (or lack thereof, for those who are boundlessly optimistic) as so many of us venture back out into the world. (Not me, though--I'm planning to stay as locked-down as possible. Fighting the virus is all about the immune system, and after both BC and LE I don't trust mine!)
Hugs, and stay well,
Binney0 -
Jo, you rock! Great slow start, and I find it so hard to start slow. When I screw up the determination to get back on track with exercise I want to go all-in and have to stop myself and rethink moving forward carefully. Never easy to balance all this. I've been wondering a lot how the depression/frustration of the current world health crisis is affecting all of us lymphers, since it takes some "oomph" to do a good job of self-care, and that can be hard to come by when we're faced with worries like the present, so you're an inspiration!
Aw, getting your hair done is a real lift. So glad you could do it safely and comfortably.
Onward (gently)! And hugs,
Binney0 -
Does anyone have any experience with Lymphedivas?? I measured myself at home and ordered a glove and sleeve. I moved some furniture around and now my underarm is throbbing with pain. Silly me...
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Hi Jinx27,
I wear juzo sleeves and mediven gloves. I feel you need to go to mastectomy and prosthetics fitters in the hospital to get measured accurately and then you can be buying it on your own. In addition, I think lymphdivas is the company that makes garments with prints on them. I assume those garments are the soft type and depending on how you are feeling, you may or may not need it. I can't wear soft ones for now. Please elevate the hand while waiting for the garments to arrive. Hope you feel better soon.
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