GRRRRRRRRR I HATE LE..........
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Thank you, MinusTwo, I will
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My OT recommends the Solidea sleeve. There are 2 different types the regular compression sleeve is very soft. The silver wave sleeve Is made to work as a micro massagers on the arm to help keep the fluid moving! I travel a lot for work and wear it on the plane each time a as well as 4 hours each day. I just was measured today and my arm is 23 cm down at each measurement point!
Both of these sleeves are made to go on both arms with a connecting piece that goes across your back — no worry of it sliding or rolling down your arm!
I order mine directly from the Solidea website from Italy - it's much cheaper even when you factor in the shipping. Unfortunatly it is not coveed insurance but so worth it!
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Has anyone had the vaccine for shingles? The age range had a change recently and since it 50+ I qualify. My doctor wants me to get it. She'd afraid that my LE side will be a target for the shingles.
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Hi, Varga. I had shingles several years ago and have since gotten both the original shingles vaccine and the newer shingrex vaccine. (Both were approved by my MO.) If you have a choice, get the shingrex; it is much more effective than the previous vaccine. I would do almost anything to avoid ever getting shingles again!
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Thanks JKL! I'm 53 and had never even thought about getting the vaccine. Anything that could happen with LE has for me and my PCP is concerned. We have had a big out break of chicken pox recently in our town and it has everyone in a tizzy!
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Varga - yes, the Shingrix. It requires two shots a couple of months apart. I had the original Zostavax (sp) shot a couple of years ago. My PCP recommended I get the new series. Warning - it is expensive - over $100 per shot - at least in Texas. The only problem is NO ONE has any. It's usually given at pharmacies or clinics & most docs don't carry it in their offices. I have been on several lists for a couple of months. In addition - I have to find someone that will give me a shot in the butt or thigh instead of the arm(s). Costco used to but when I added my name to their list, told me their policy has changed. I have found one Kroger store that will do shots in the butt & I'm still on the list there. The pharmacist did tell me once I get shot #1, I will go on a separate list for shot #2 so I can get it within the recommended time.
Link below about the shortage.
https://www.healthline.com/health-news/shingle-vaccine-shortage
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Thanks MinusTwo! I have been placed in a waiting list and was told it was a two part vaccine so that must be the one.
Next question. Does anyone sleep in a night garment? My night garment is running my sheets and pj's! My fitted sheet has a thin spot that is ripping due to my turning over at night! I was curious if anyone else has this problem. I definitely turn over more now than I ever have. The LE wakes me up at night if I'm in one spot to long.
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So confused! I read on several websites that if any nodes are removed to avoid blood draws, blood pressure cuffs and IV's in that arm but my surgeon said nothing to me so I emailed him and got this response.
"Unfortunately, there is a lot of conflicting information on the Internet in regards to lymphedema. Well-designed, quality studies from the past 5 years have shown that patients who have less than 5 lymph nodes removed have NO precautions in terms of blood pressure cuffs, labs, and IVs on the operated arm. Thus, you have no restrictions."
For those of you that had 5 or fewer nodes removed and ended up getting lymphedema. I am interested in hearing what your opinion is and what triggered your lymphedema.
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SD Woman - the average med school education includes 15 minutes of lectures about LE. That's from a Stanford med school professor's lecture. Most docs don't know much about LE and tend to put their heads in the sand about recognizing it or recommending prevention and/or assistance. Yes - it is true that the risk is smaller the fewer nodes that are taken. Yes - it is true that many (maybe most?) women don't have any problems. It's up to you to determine how much risk you are willing to take.
My BS and PS said much the same thing as yours. No big deal. I took myself to a wound care and LE doc and got a much more thorough assessment. Turns out I had mild truncal LE with only the serial node biopsy of 2 nodes.
Personally I always use elbow length gloves when I prune roses. A friend gave them to me who had BC 25 years ago and never got LE due to luck & constant precautions like this. I also wear sleeves & gauntlets when I fly. I don't allow sticks on either arm and no BP on the more compromised side from later surgury. I allow blood draws only from my foot & the same for IVs for anesthesia or contrast medium. The hassle is worth it to me. My LE has stayed mainly truncal & breast and I'm trying to prevent progression to my arms or hands.
Below is a link to a site developed with much input from some great ladies here at BCO. It's important for you learn as much as you can and develop your personal risk plan. It's also important that you realize that even a fair number of LE therapists don't really know what they're talking about. If you read through this thread, you'll see that over & over.
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SDWoman
I had 4 nodes removed, and did not get lymphedema until 8-9 months after surgery.
I overused my hand/arm, by helping my aunt do exercises for her leg, she had had a stroke, and lost the use of her left leg. LE showed up about 4 days into the overuse.
I oddly enough never did restrict use of my arm before the LE appeared.
dsgirl
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SDWoman I do not have lymphedema, but I am having issues with fluid. Thankfully, my breast surgeon oncologist is very proactive regarding lymphedema and had his patients see a LET prior to surgery. I see her everytime I see him. Since I started having issues with fluid I was seeing her every week. I now have a compression pump at home that I use for an hour each day, so not having to see her as much. I am not sure there is alot of rhyme or reason as to who develops LE and who doesn't. I do know it is very important to monitor though as it is reversible if it doesn't get too far along. I have been told to avoid sticks and blood pressure in the effective arm as well, but they also say that new research doesn't necessarily support that .... surely doesn't hope to play it safe though.
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I was not aware you could.have fluid build up without LE? What's the difference????
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Does any of you ladies have a slightly enlarged lymph node above the clavicle on The lymphedema side
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InnaB2018 I don't have lymphedema, but I have the enlarged area above my clavicle. It was like that before surgery.
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Jo- I have not been real active here either. Life is so busy! I'm sorry to hear that your granddaughter's recovery is challenging! Sending prayers for her safety at home and proper care. It can be a struggle when the cognitive ability is compromised! I'm no help with the abdominal LE questions. I'm a walking cord most days. I just pop them and go on!
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Joanne, how terrible that the stroke damage is severe. I'm stubborn and would hate going to a facility vs. home, but it sounds like she could decision certainly be in jeopardy without the higher level of care.
Varga, I got shingles a few months ago and, yes, it was on the LE side. Luckily, it wasn't too awful, but I will probably get the vaccine in two years when my doctor projects immunity from the recent episode will erode. That assumes, of course, that the drug manufacturer can meet demand by then.
Lyn
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I I am mad right along with you. I have lymphedema in my left arm and got some pretty sleeves so that helps a little. However the fact that I did some surgery to fix me and now it seems like everything just gets worse. I have neuropathy too. Glad to hear someone else is going through the same thing as me sometimes it helps to hear I'm not the only one
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I had my exchange surgery on January 8th. I've been battling a flair up of lymphedema ever since. I can't use my Flexi Touch because of the incisions and the MLD specialist says not to wear my sleeve yet as it will just make everything worse. So I am doing home messages twice a day with hubby's help. and trying to get in to the specialist at least twice a week. I am in so much pain all I want to do is cry. And I do. I cried through the whole massage this morning. i try not to cuz as the tears fall from my eyes my hubby gets all tender and feels bad. So I started on CBD yesterday to see if it will help. Got my weed card and went shopping at a shop. First time! ever! It was crazy. So last night I inhaled some and I slept pretty good. But its not a cure all. Too bad.
Jo -I am sorry about your granddaughter. It is so hard to watch family members suffer.
I guess I am going out to find me a shingles vax. I don't want that to happen.
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inna you need to check that out right away.
Ml. If you don't have lymphedema why are they using pumps to drain you.. Is it post surgery fluid then.
I just finished shingrex shot in butt. Shot one no problem in butt, shot two in butt. Bad Flu symptoms for two days and huge red swollen spot. Couldn't sit for three days. Still sore. I sure hope this shot is as good as they say,my mom suffers from excuriating head shingles aftermath since 2015, she's 94.
Avoid nodeless arms with needles and bp. any puncture whether from a sewing needle (like I did yesterday, yes I cleaned and banaided ) or Blood draws etc means entry for germs, use alternate sites. A doc with lymphedema that use to post here debunked that study talked about in previous post. It's somewhere on this site
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hugz - I had my first Shingrix shot in my butt last week - but high up so no problems sitting. Three days later I still have a sore area but no other SEs. So sorry to hear #2 caused more problems. Oh well, I sure don't want shingles.
I agree - no sticks, no pricks, no blood draws. And I limit BP cuff to my (so far) non-affected side (SNB only) and require them to do a manual cuff.
Jo - I continue to keep your granddaughter in my thoughts. Hope against reason that things improve.
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HELP. I a, currently in the hospital admitted through ER with cellulitis. It is Wednesday morning and my rash is worse not better. My fever is gone but now it's moved to my right boob. The none cancer none lymphedema side. It gets better during the day and at night it rages. The doctors claim my white count is going down so to them the numbers mean I am getting better but my rash is getting worse. Is this normal?
I itch and I am in pain. My lymphedema is out of control and its move to my none surgery side!!! Help. This is not a hospital I've be to before. I'm sacred and freaked.
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kandyhunt, I am so sorry! Do you want to co tact your oncologist and explain the situation to him/her? Maybe you can request a council from an oncologist in the hospital you are in? Take a breath. Cellulitis is a horrible thing, but thankfully, it’s treatable. The rush can be an allergy to medication as well.
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jo thx for granddaughter update as I was wondering. Please do join our kick butt thread. Absolutely no competition and do as much or as little as you want. It will motivate you though. Start out slow and build up to avoid sore muscles. I have abdominal band but not used yet as I want to cut it and insert again my Breast in jogger bra. One girl did this for her breast le and said it worked.
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When I went for my physical I was referred to OT...again. I have fluid pooling under my ribs, on my elbow and in my stomach. I just thought I had a pouchie belly the tamoxifen. (Ya know..permenopause ) I like the looks of that belly band! The K- tape is helping with the fluid on my ribs and my elbow doesn't hurt anymore! I decided to do my CEU'S to keep my OT certification. I need 36 before March 31st. I have gotten 20 out of the way the past 2 weeks. I have been squeezing on line classes in at every spare minute which I really don't have!
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Jo- it does! The swelling is down all over my right side. It's just annoying have to go to OT/PT so much! I am so thankful that I live in an area were there are so many wonderful therapist(really well trained and knowledgeable! ) and that my insurance pays for all but my copay. It's just so time consuming! Went to OT yesterday. Office manager called and asked if I could come at 4:30 instead of 5. I said I'll try. (Needed to pick grandson up at school after band..time varies) she said just get there when I could but they could see me at 4:30 due to a cancelation. I got there at 4:30. They took me back at 5! The therapist had not been informed of the phone and worked with her other client longer! I didn't get home until 6:45! Makes for a long day! I cook dinner and clean my kitchen every night and that was late to be eating and cleaning up!...whine whine whine....I am thankful and blessed need to remind myself!
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Hi all!
Have been trying to get in for (a few MONTHS now ! LONG and frustrating story...PM out to BINNEY 4. Hope all are well.I am having leg swelling and pain and wondering about LEG LE now :>0( ( Binney4 pls see my PM) So glad to be back and recogize so many!
MRI showed bone marrow edema and they shot me with cortisone ...still swollen. I dunno.
Too many details so thats all for now.
Take care everyone!
Laurie
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Hi everyone,
Years ago after a bilateral mastectomy, I had a special LE trained massage therapist work to open up new channels for lymph to flow out of congested areas (for me, things stop flowing in my neck and under my left arm and in the centre of my chest). The massage worked. But now, 12 years after surgery. I can feel problems starting to develop.
So I've started jumping on my Rebound Air (small personal trampoline) which is helping a lot. After about 20 minutes gentle bouncing (to music) I have started to feel lymph release in various parts of my body.
This is the reason I bought the trampoline 10 years ago, but haven't really used it until now.
I was wondering if anyone else is able to help their LE this way?
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Hi everyone,
Years ago after a bilateral mastectomy, I had a special LE trained massage therapist work to open up new channels for lymph to flow out of congested areas (for me, things stop flowing in my neck and under my left arm and in the centre of my chest). The massage worked. But now, 12 years after surgery. I can feel problems starting to develop.
So I've started jumping on my Rebound Air (small personal trampoline) which is helping a lot. After about 20 minutes gentle bouncing (to music) I have started to feel lymph release in various parts of my body.
This is the reason I bought the trampoline 10 years ago, but haven't really used it until now.
I was wondering if anyone else is able to help their LE this way?
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Ok ladies, I have a tiny goose egg on my pinky on the LE hand. It's sore a little red...what should I do??? Wait or act??
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it's tiny, hard some what movable and right at the joint. I didn't mash it that I was aware of. I have had a headache for days and now I have a low grade fever. I hate over reacting but "under acting" is so dangerous when it's my LE side! Thanks Jo!
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