GRRRRRRRRR I HATE LE..........
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such good advice glennie
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@glennie19......Drinking alcohol is always good advise
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Glennie: Thanks for the tips. I've started taking the oral alcohol in advance. Looks like that is what I'll have to do since I can't find anyone who will draw blood from my foot. URGH. And I live in Houston where there is a major medical center & tons of hospitals.
I'm going to ask my RO when I go in for PT on Wednesday, even though that is not her area. Also going to call my OB/Gyn since she wants to see the blood work before starting Prolia shots next month.
But oh how tired I get of doing the job that the medical community should be handling!!
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Full disclosure: My LE PT did not recommend drinking the alcohol,, that was my idea,,, but hey,, I figure, it could help, right??? And totally get that being tired of having to police the medical community for the things that they SHOULD know.
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I understand the full disclosure and took the comment as given. Still, I've been out in the heat & humidity supervising pool registrations for the Civic Club. I just got home & made myself a tall G&T.
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I'm going to a Debbie Downer, sorry in a advance. Caution......PROLIA.... I received Prolia from my Oncologist the first time I didn't notice the price. the second time it wasn't completely covered. The shot was prepackaged, short little needle and cost 800.00 if bought from a pharmacy (costs less if bought in bulk). Receiving it at the oncologists office cost 4,000.00+. The 4,000.00+ didn't cover the blood work that has to be done every 6 months or the office visit. Anthem paid 2,000+ and there was a minor discount leaving my portion at 1,800+ for a shot that originally cost 800.00. Boniva would have cost me 5.00, that's my copay for anything at the pharmacy, it is my understanding that these 2 drugs do about the same thing, I could be wrong about that.
I had many shockingly comical phone conversations about this bill. One person actual said "what do you expect, cancer is expensive" and another said " you're paying for the expertise of the person that gave you the shot". Because I stopped taking the inhibitor I no longer need Prolia. I'll start something else when my 6 months is over.
I don't know if Boniva requires blood work but I don't think it does. You may want to discuss Prolia with someone at your Docs office before taking it.
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Docs, especially oncologists, don't seem to have any clue about the cost of the stuff they prescribe. Maybe I should give them the benefit of the doubt since all insurance is different. But with insurance costs being what they are now, more and more people are forced into insurance plans with no drug coverage or with a super high deductible so that we end up paying the full cost for quite awhile anyway. My Neulasta shots were $6,000 each! Times six shots! Insane. And our insurance at the time was very good.
GoodRX tells me that Prolia costs $959-$1140 (per dose!) at various pharmacies in my area right now. Nope. Not happening. I refused it for other reasons, but seeing that seals the deal.
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Susan, the nerve of some people, I would have said, really cancer is expensive, I didn't know, I'll have to go look at all my bills and tally. Lol,rude people that are in the wrong job.
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Hi all - I have LE in my left arm and was wondering how many have a compression machine for home use and what the cost is? I've been using the machine 3 times a week in therapy and they are working on getting one for home. TIA
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If what I'm writing pi$es you off I understand but I have wondered this:
Has there been to much time, money, and effort put into the "pink" thing? Men don't have a symbol or color or a list of products (I saw shoe strings yesterday)that tout or "fund research" for prostrate cancer. Have we (woman) allowed breast cancer to become not only big business but somewhat of a craft project which makes light of it?
I saw photo's of some woman at last years Oaks (pre Derby fillies race) with ridiculous over the top pink hats on to represent that they have/had breast cancer. My thought was, how odd, a breast cancer craft project. They should have been wearing black, have some woman wear Tshirts that say "I won't be here next year" or "I now have Lymphedema and can't pick up my child" or " I'm forced to smile but I want to scream" or "We can no longer afford vacations because breast cancer is expensive", "reconstruction ain't for sissies" or maybe even "WTF" etc etc.
I wonder if an army of angry women in black versus a group of lovely well mannered women in pink boa's would have more effect on finding a cure for not only BC but LE?
Just venting!
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Susan - agreed. I'm to the point I really hate pink and I used to like the color.
Soooo... I finally got the blood for labs drawn from my foot by the doc at the one of the main hospitals' Blood Donor Center. The guy was a marvel. Looks like I'm OK to keep using him for blood draws every 6 months until he retires, which might not be too long since all the rest of my docs are retiring.
As a further reference, all the other places I called said maybe MD Anderson would do it.
Frill - The reason to not replace the port is that I am through w/active treatment. I do understand that logic. I finally convinced the MO today to check the "in" flow through the Interventional Radiology department using a dye & fluroscope. If fluid can go in correctly w/o backing up, even though they can't get anything out, the supposition is I can go ahead and have the PET/CT nuclear dye put in through the port and have this one last test before the port is removed. Since my tumor markers rose this month, I want to push ahead with the PET/CT.
Thanks to you all for your thoughts & ideas.
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It depends why I’m wearing compression. If it’s preventive (as in for repetitive activity such as guitar-playing or scrubbing, or for hot weather, flight or rapid ascents), I remove it when the danger has passed (give it an hour first). If it’s for symptom relief (as in swelling from an unexpected low-pressure front coming through or if I’d forgotten to put it on before getting in that rapid high-rise elevator), I keep it on till bedtime. And I never wear a sleeve alone--always with a gauntlet or glove, even though acc. to my LE doc (Dr. Feldman, founder of LANA) I am still Stage 0.
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Balthus - sorry for my delay in answering your post. The bra did run true to size. I'm still happy with them. I hand wash them constantly as I sweat horribly. Summer and Lymphodema do not go together. Or fall. Or winter. Or spring. Hugs to all and enough with the pink washing of breast cancer! ✌️❤️ Lind
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I have a question - I had a UMX 6 years ago for the cancer, and developed LE. Now I'm planning on having a PMX of the collateral breast - I do not want them to use my LE arm for the IV - should I ask for the foot IV? When I had my bilateral carpel tunnel surgery they put the IV in my foot. I think that I need to ask for that when I get the PMX - agree? or disagree?
Also, any suggestion, ideas, concerns, etc... that I should know before the PMX? Thanks in advance.
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By all means Linda, tell them you must have a foot IV. If you have to register ahead, tell them then. Write on your affected arm w/a marking pen - "no sticks". My hospital has bright pink plastic 'bracelets' that they clip on - no blood draws/no blood pressure cuffs. Be sure the anesthesiologist knows in the pre-op area before they sedate you. In one surgery, they had to wait until I was in the operating room to place the line because no one else could manage it in my foot. But do insist! Good luck with the surgery.
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Linda, they can use one foot for the IV and the other leg for the blood pressure cuff. Ask them to put the cuff on the calf rather than the thigh, though, as it's more comfortable. They can also use your neck for the IV--not as uncomfortable as it sounds. If it's in your foot they won't let you walk around after surgery until it's out, but if it's in your neck you can. Wishing you smooth sailing and a quick recovery!
Gentle hugs,
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Thank you both for the great suggestions!!!! I just found out my surgeon has retired, so checking on who I would let do the PMX. It's always something isn't it. :-)
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I'm having carpal tunnel surgery next month on right arm. Lefty is LE arm. I had a talk with surgeon about my concerns and he WAS TOTALLY ON BOARD! OMG,, I was so happy. I've been putting this off cuz I was afraid of getting IV in lefty. (I decided not to use the recommended hand surgeon, cuz he minimized my LE concerns) So when I talked to surgeon, I asked about foot. He doesn't like IV in foot cuz he says it is a risk for DVT. (first I've heard of that, since I've heard y'all getting foot IV's) So I mention that I always try to get Dr P for anesthesia ,, cuz I know him and he is great. So surgeon pulls out his cell phone and CALLS Dr. P right there. **hey I have glennie here,,you know her,, she is pharmacist at the hospital and you've done her previous surgeries,, here is the situation** He explains it all. Dr P says,, he will start IV in right arm,, then when I'm under, he will start a jugular IV and pull the right arm IV for the carpal tunnel surgery. OMG,,, I was so thrilled to get this support! Now, I just gotta be sure they give me Dr P again.
And then they can do BP on leg. I'll be sure to write on my LE arm,, NO iv's and BP's like I did last time.
Any of you have carpal tunnel surgery? Any hints on recovery time?? Any advice is appreciated!
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I had bilateral closed carpal tunnel surgery the same year as treatment. They did put the IV in my foot, went great. With closed your using your hands right away, but the first couple of days were a little challenging.. After that it was a breeze. I just couldn't lift anything over a couple of pounds for about six weeks. 5+ years later no carpal tunnel issues. If you're having the open procedure recovery is a lot longer.
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Glennie, I sympathize with you for your carpal tunnel surgery. I needed surgery on my non-LE arm last February when my crutch tip slipped on the ice and I broke my elbow. I wore a Lymphadivas Hospital pattern sleeve and glove, bright yellow with No signs and "Not this arm" , on my LE arm, to make sure no one used it. I had my surgeon pre-order the IV insertion into my foot. I had a little fun with the nurse when she asked which foot I wanted the line in. I said, "left," which of course I lost to bone cancer many years ago. She looked at my foot, looked at my chart, and simply said, "let's try the right foot, shall we?" The foot IV worked fine. I wish you the best with your procedure.
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Thanks, Amy!
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HI Ladies, I just started a discussion called Cellulitis and Hyperbaric Oxygen therapy??? If anyone has any experience with hyperbaric oxygen therapy with diabetes, lymphedema or cellulitis, I appreciate your sharing. Thanks so much and God Bless! terri
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I finally managed to find a treatment center that works with my insurance and I had my assessment today. The doctor did find some areas of pitting edema (one lower arm, one upper arm, one chest and one shoulder/back), but my hand was in good shape today. Much to my surpries, even at this mild stage, they will put me in bandages for the next 5 weeks. I didn't think about this while I was sitting there, but how restricted will my arm be? Will I be able to type? How difficulty I'll it be to wash hands withoutgetting the bandages wet?
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You'll still be able to type. I type all day long and had to do that. I may have to go back to it. My hand is my most stubborn area, so my hand was wrapped up tight. Most stubborn but the last to puff up. I had to rest my hand occasionally, but I got stuff done. It just wasn't at 90 wpm. LE is so freaking weird. All the rest of my arm has had periods of normalcy, except for my hand.
You should be able to do everything regularly if you arm and hand are properly wrapped. It may not be as easily as before, but you'll be able to do it. Like I wrap my head in scarves every day - I can do it with my arm wrapped, I just have to rest my arm depending on how long it's taking me. Earrings are a pain if it's too tight. I can still do it, though.
Hand washing, though. I don't have a good solution except that I used hand sanitizer on that hand.
Oh - depending on your arm and the type of wrapping, some shirts are going to be a problem. Long sleeve shirts with no give may not be viable.
I did exactly as I was told - "perfect compliance" and was in a sleeve in just under 2 weeks. My PT said the average was 4-6. The lowest she'd ever seen was 2 weeks. But then the arm acted back up and no one could figure out why. Anyway, you might get out faster if you do everything they tell you. Like staying in that stupid wrap 23 hours a day. My sister literally set the oven timer for my hour. I had to run to get to my shower.
Ask them to give you at least 3 sets of bandages. Rolling them is a pain. This way you have some rolled and some to take to PT for THEM to roll.
What is pitting? I haven't heard that term before.
And now I'm getting no treatment because of insurance. I just don't get it. I probably have cellulitis because I burned my arm with a curling iron - of course it was "the" arm.
Effing LE.
If you have any other questions, let me know.
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@frill....The term Pitting was used differently by my RO and my LEPT which was frustrating. Pitting describes what I call indentions, you can push on the skin with your finger and leaves a dent you can see.
Be sure to take care of your burn! if you do you can avoid cellulitis. At least 2 posters on this board had very serious burns and neither of them got cellulitis.
There is a lot of info on this site that can be helpful:
http://www.stepup-speakout.org/
@1step...Typing actually helped my LE discomfort. I was having some pain in my arm and started playing a word game ( a lot of typing) the discomfort went away and didn't come back. I told my RO this and asked if it the typing had really helped, of course she didn't know. bothersome that she doesn't know ANYTHING about LE. So all I can say is, for me, typing helped.
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I havea pneumatic pump. I will be flying next month and was wondering if anyone has heard of a travel bag for the pump. TIA
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When I got mine, I was told to store it in a duffle bag. I got a cute Vera Bradley weekend bag that it fits in perfectly, with room to spare. My insurance would only cover the arm pump, not the bigger one, so that would make a difference as to size
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Ended up going into the doctors yesterday - I got bit by a spider and maybe her babies that invaded our bed. 5 bites on the neck and 2 bites, a day apart from each other, on my LE arm.. here are pictures of the 2 on my arm.. Doc took time to show me the difference between a severe allergic response and cellulitis. Sent me home with antibiotics to take in the case it turned and became infected. I think this part of LE is worse than sleeves.. Not being able to wear sleeves and waiting and hoping it doesn't make an instant turn to cellulitis. (I hold fluid in my elbow, where I have had a surgery years ago and it is swelling at the moment.)
Bite 2 - Day one by the time I got to the doc it had doubled in size.
Bite 1 - Day two - if you look there is the bump in the middle and then a bullseye around it. It was also growing from pea size to 2.5 inches round.
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oh no, Gma!! Hoping that it will resolve quickly!!
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