GRRRRRRRRR I HATE LE..........
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I always warn a flight attendant that when I’m fist-pumping I’m not celebrating anything and when I’m waving my raised hand I’m not trying to get her attention.
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Just going into a store and buying 'a sleeve and glove' is not the answer for all. Garments come in different levels of compression. The mid- level does not work for all of us. I have to have low compression (18-21). Higher compression causes issues/swelling. Some need higher. Because of my syndactyly (webbed fingers) it is impossible for me to wear an OTS glove (unless I want to have the webbing literally cut open). For most, OTS will work BUT not for all of is as we are each so unique. I have a fantastic LET guy and it took him a lot to get my gloves right so I can wear them. So besides dealing with what I need compressionwise there was also my hand issues. So my garments have to be Custom and it did take a while to get them 'right' ut now it's just reordering them every 6 monthes.
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Hi everyone, I follow this thread and the other about kicking LE's butt and I have a question for those of you who've been dealing with this a lot longer than I have. Do you allow anyone to draw blood on the non-surgical arm?
My surgery for cancer was back in 1991 and they took all 26 of my lymph nodes. I was warned then to never have blood draws or BP measurements on that arm among other things and I've never had a problem with lymphedema until now. My cancer came back with Mets to my lung at the end of 2015 and I'm doing fairly well on Ibrance and letrozole. However at my last PET scan in October, I foolishly allowed the tech to give me the contrast in my surgical side arm since the veins are so bad in the other arm from Chemo. My MO had said after all these years it wouldn't be a problem, well he was wrong. Now he says, drawing blood won't cause anymore problems, just don't do any contrast injections. What do you think? Do you allow blood draws on an arm with mild LE? It sure would make my life easier. Yesterday it took three tries to get some blood out of my other poor arm. I don't want to take any chances since we will be flying internationally in September and more LE would be bad.
TIA for your advice, Faith.
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Faith. . .I have bad veins on both sides - small and hard to get to. I have let them draw blood on the node side because sometimes that the only side they can get a vein on. I have truncal LE on both sides which flared up with my last surgery and strangely when I got my 3D tats last week. Hugs to you.
Scottie
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Faith - so sorry your doc didn't have a clue - like 99% of the docs. I saw a lecture out of Stanford that said most docs get 15 minutes of training about LE in 8-12 years of medical school.
Personally I would never let any tech or doc use the side that had ALND surgery for anything. Since I had serial node biopsies on both sides, I have them take blood from my foot. Yes, it is a chore to find someone who knows how to do that. I do allow manual BP on side that had only the node biopsies.
What about getting a power port? My MO recommended before treatment and I kept it for 3-4 years before it closed off. I know you have to have it flushed every 6 weeks - 2 months, but you can use it for treatment or blood draws or contrast for scand.
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Scottie and minus two, thanks for your response. I guess I will get keep trying for blood draws on the non-surgical side until there are no more veins and then I might try for the foot. I really don't want a port yet as I'm not having any Chemo yet and I'll wait until when and if that happens. So far, I'm being treated with oral pills and when Ibrance fails hopefully long into the future, I'm thinking there will be other oral meds or Faslodex injections. It would be nice to be stable enough that the blood draws would only happen every two months instead of one. We can always hope.
Thanks again, it's really good to have others to help me think these things through.
Hugs, faith
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My BS’ NP told me something game-changing yesterday at my 6-month mammo & checkup: the breast surgeons, ROs, and MOs in the NorthShore system have been conferencing with the lymphedema specialists (one of whom founded LANA): those who have had SNB with 4 or fewer nodes removed, so long as they do not exhibit at least Stage I LE, can safely have blood draws on their surgical side arm, so long as there is strict infection control—the new thinking is that using only the “good” arm for draws can exhaust the supply of usable veins and lead to having to use thighs, feet, and even subclavian arteries for draws & I.V.s. I messaged my LE doc. Stay tuned.
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thank you for posting this, chiSandy. I posted just yesterday about blood donations after LE. I'm curious as to what your doc says. Keep us posted, please.
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I had SNB of only 3 nodes on my good side. I let them do Blood draws back in the day and so I have truncal & breast LE. Nope. Not gonna do it again. Who ever is conferencing, it's not their arms!!!
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Dunno about your local blood bank, but mine (LifeSource) will not let cancer survivors donate blood until 5 years after they have finished treatment—including endocrine therapy.
Truncal & breast LE doesn't happen from needles to the arm, much less from the “good" arm. It happens from and depends upon which nodes were disturbed during the course of SNB and the surgery itself, as well as any radiation to the nodes that drain the breast and trunk. Other factors, especially obesity, can predispose someone with relatively few nodes removed to LE, because the stagnant lymph fluid pools more easily in the interstices between fat cells. It may have occurred after your “good side" arm blood draws, but it was coincidental. The needles don't cause LE, the disturbance of the lymph system does. And the admonition against needles is to lessen the likelihood of cellulitis developing as a result of an LE-compromised lymph system being unable to pump away fluid that is full of proteins, stagnates and gets infected.
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You can take my ankles, neck anything but my arms. Maybe when I'm close to dying or running out of areasI might let them take my non le arm but I'm bmx and don't take any chances.
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Chisandy, thanks for the info. Since I had "all" 26 nodes removed back in the dark ages.(1991), no blood draws for me on that arm. I'm not even sure if they had SNB back then. I guess I'm just too old and not meant to still be around. Ha! Little do they know, I just visited my 95 yr. old aunt who still lives alone and has all her marbles and then some. She's amazing!
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I'm with hugz. Since I too am a BMX, better safe than sorry. As I said, it's not their arms.
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Chiming in with you minus and hugz. Not their arms, and not their trunk (which is horrible). They can meet on it, give all kinds of statistics and then later say oops, maybe you shouldnt have blood draws, sticks etc. I'm not taking any chances. I'm all for research, but since I'm a research monkey in process, this monkey says no to sticks for now.
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valstim,Well said.
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I'm with you valstim.
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gee, that sounds fantastic!
i am desperate for relief.
I have bi lat mild lymphedema in arms with spread to left breast and now side and back as well.
(oops..was responding to a post about a machine from Finland)
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My lymphedema therapist prescribed an apparatus for a better word, called flexi touch. basically it goes on your affected areas. It is a gentle massage. It has helped with both my are and hand lymphedema. I've now gotten an additional panel to help with my mid section. Here is the link. It's helped me immensely. https://www.tactilemedical.com/products/flexitouch/
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Perhaps this has been asked before, however I can't seem to find an answer. I just got over my first case of cellulitis in my LE arm. I was put on clindamyson for 10 days but had several very dizzy spells (one where I collapsed I was so unbalanced) and eventually they told me that 7 days would be enough. My question is........now am I more prone to cellulitis now that I have had my first bout with it? I am eager to have some idea and the web isn't really giving me an answer so I am choosing to ask the women who know the information better than Google.
Sending good thoughts to all
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well I'm no cellulitis expert but I do think my memory serves me right. I do think you are prone to cellulitis in the future. Be vigilant and you will stay on top of it! Ask questions, get knowledgable.Search some of our threads. Type cellulitis in search box.
Anyone here still hate lewith a vengence. I do!
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I think Hugz is correct - cellulitis is always a danger. I take an antibiotic Rx with me when I travel just in case. Below is the cellulitis page of Step Up/Speak Out
http://www.stepup-speakout.org/Cellulitis.htm
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Thank you both for your answers. And MinusTwo I have bookmarked the web site you sent so I feel more comfortable now knowing where to read the most reliable information. Currently dealing with a moderate case of what I suspect is C. Diff from the clindamyson.
Sending good thoughts to all.
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Gezzh! I'm so new to LE I hadn't even thought about cellulitis! Hope you are on feeling better Barbara. Any idea what caused the cellulitis?
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Hi Vargadoll,
The doc in the ER told me it looked like a spider bite, however I had been in my garden weeding that day and the mosquitoes were out. I knew within 24 hours that something was not right with the bite. It looked okay but the area was very hot, no pain or tenderness, just a bit red and hot. By the following day I was sure it was cellulitis. Hope you never experience a bout with it.
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Yikes!!! It makes me so mad that a bug bite of any kind can cause such a big problem! I am a mosquito magnet to! My DH says he does need repellent if I'm around. I hope you are feeling better!
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Thanks Vargadoll for your good wishes. I am fine now and fingers crossed that I won't experience it again. Hope you ever have an issue with it. Sending good thoughts
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Joy! I already have swelling of the hands in the summer due to arthritis flair ups. I will be getting many removed as my scan showed "a very diseased area" to the nodes. I've already been warned about the swelling and the compression etc....just when you get hit in the face with cancer you get kicked in the gut with this crap to deal with...
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just want to know if anyone else hates le as much as I do. My girlfriend comes over to me at a function and shows me her arm saying she's got le from rads. I say I'll help you navigate your le so you can make sure the beast doesn't get any nastier. I'm glad to help her and I was so glad these boards helped me navigate my LE. Still I'm thinking grrrrr....le ruins so many lives.
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I start tomorrow morning at the LE therapist for therapy 2x / week for 5 weeks. She said she can get it to go back down, but I have to keep it down. This is going to be fun
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I've followed this forum for a while and want to THANK YOU for all the information you've shared!
My question is prompted by what HomeMom just posted: I have very mild lymphedema, and am trying to keep it that way! So besides wearing a sleeve, I've also had several rounds of LE therapy.
I've always had 2x/week for 5 weeks (except for the very first, more intense treatment), so I was surprised when the therapist told me that in her opinion, the best solution for the next round would be once/week for 10 weeks.
Everyone's situation is different, so I'm not looking for any confirmation or denial of my LE therapist's claim, but I'd be interested in knowing if any of you have had success with infrequent treatment over time, as she is suggesting. I need to stop worrying that this is going to be a waste of time!
TIA!
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