GRRRRRRRRR I HATE LE..........
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ducky
I hope you didnt take offense OR think my post was directed as " advice to you ". It was not.
I too research everything.
No pi$$ing contest here, but I think I've got you beat
- LX SNB with 2 clean nodes and add to that , NO RADIATION, the big bad wolf of LE! My circulation has most definitely been compromised before LE. IF I had an INKLING of any of this crap, I would never have had the LX. May sound crazy, but I had a luminal A cancer and with no rads or RX tx , I honestly think I would have been better off leaving it alone. One thing I do know- I wouldnt have LE!Hey, maybe if we research enough we'll find the cause and better tx ( Lorenzo's oil ?) Just dreamin'........
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Hey how cool would that be....absolutely no offense takin......great to exchange notes...hey we may come up with something earth shattering....lol....my LE actually began to show before Rads........remember, no matter what our treatment choice was we will still second guess our decision....I am on Letrozole...Was on Femara, but hit the gap, and was going to cost $1,500 for a 3 months supply. As a former Pharma person, I know more about generics then most...so I did not want a generic .while on Femara I did have some nasty SE's, and many time considered stopping. My kids asked me not too....well anyway I am now on Letrozole...not too many SE's, so what am I thinking now......this can't be working, cause I don't have as many SE's....so we will always question our decisions. All we can do is hope we make the right ones.......at one point was going to refuse Rads, but my BS said even though my margins were very good most of the way around the tumor area. There was 1 spot that was 1.25.......in n medical community that is .25 above what they say is "good"' my BS said Rads would give me a much better outcome. So I agreed. I did very good with Rads. Face it, we are always wondering when the other shoe will drop, but until it does,.....I will live hoping I did the right thing.........hope you did too....hugs
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The way I understand it, cancer has nothing to do with getting LE, it's the cancer treatment that messes with the lymphatic system that causes it. My therapist told me the theory is that some people have the ability for the lymphatic system on the other side of their body to help out the damaged side and others don't. No one told me that poor circulation has anything to do with it, but it makes sense to me that they would be related. I did have chemo, a mx, ALND and rads so I guess I was at a very high risk, bustier ally feel just any one of them and I would have still ended up with LE. I had cording even before surgery and LE before I started rads.
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Well, Ladies, I came home today with an Amoena post-op Cami/bra - gives a little compression on all the torso and doesn't cut in the underarms.. I will have to make some thicker pads for the straps but it is the first thing I have tried on over these 20 months that actually looks like I can wear it.. Fitter let me take the compression bra back in exchange for the cami - they were the same price. Here is hoping that it doesn't cut anywhere I missed..
I am waiting for my sleep study results to come back and working up a storm.. and seeing my RT and Pain doc these days and no time to be here.. I read up once in a while but won't be writing much..
Here is hoping everyone is doing ok and wanted you all to know you are all in my prayers... Have a great week.
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KayG,
I read that you had cording before surgery? Before BMX? What caused your cording if it wasn't from surgery?
My severe cording definitely a result of a 7 hour difficult BMX, ALND, followed immediately by a 2 hour immed recon with direct implants that had complications. Didn't have radiation until 8 weeks post op.
Has your cording resolved?
Take care!
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KayG
Nobody told me BEFORE the LX, and I agree - cancer itself has nothing to do with it ( which is why I would have left mine alone had I known)It was my cardio dr. who suggested that he believed my compromised cirulcation and low BP issues etc ... most likely played into all of this.
For 2 yrs PRIOR to all this, I had been having very ICY cold feet ( even in the heat waves) I went to see a vascular dr. Had an ABI, asked for Doppler tests etc .. they said just poor circulation they guessed.
I have had neurocardiogenic syncope and low BP for many many yrs. It's all related to the circulation etc etc . My heart dr. is the one who said I was probably a candidate for LE due to the compromised circ. system. He didnt say it is purely scientific, but it does makes common sense.
Yes, 'ducky's oil' - why not ?!
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Nibbana - I have just started PT with a therapist that is part of the PAL study at U of Penn. She works with one of the 4 control groups 3 days a week. I see her today and will ask her about whether there is a published (or unpublished) list of personal trainers for Seattle that are trained in PAL-protocals. She said the study continues thru 2014 so I would think that there may not be a whole lot of trainers or other PT's who have jumped on board yet.
Regardless, any cancer resource hotline should never answer any question with "Huhhhh...what?". Instead, they should be gathering info on every question they don't have an answer to and promising to look into it and get back to you, AND THEN DO IT. Ahhh. if the world only worked that way....
On another note, (here comes the GRRRrrr) Just started PT for my trunk, axilla and shoulder as a pre-surgery preparation (in June) and had my arm wrapped for the first time.... I have used sleeve and gauntlet in the past but this was the method Dr M wanted me to use...... I was able to keep the wrapping on for 31 hours before tearing it off due to a skin reaction...... My entire arm began to itch about 10 hours into it and the itch got worse and worse and deeper throughout the entire next day until I thought I would start screaming and not stop......Has anyone else had the same problem? Unable to use wraps because of the itch? I definite had layers of cotton next to my skin and then the foam over that before the wrap began, so the foam was nover coming n direct contact with my skin.
I called my PT and removed the wrap and went to the sleeve and gauntlet for the rest of the day...... My skin reacts badly to so many things that we will need to find some alternative...... So that's $125 flushed after one day's trial..... I will give the rest of the supplies to someone else at the center.....
In the mean time, my PT does a mean MLD and the trunk and shoulder are much less congested after just one session so I look forward to more treatments.
Nibbana, I'll let you know if my PT can help find someone for Seattle in personal training at U of P.
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I have been experimenting for the last 3 days. I have not worn my sleeve or glove and my hand is so much better. The arm hurts all the time but the hand is no worse for wear at the end of the day. I am going to continue this for a few more days and see what happens. If it is not better but not worse than maybe I will not wear them anymore. It seems like my hand swells more with the compression????
Maggie
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Maxine,
I, too, have severe skin reactions to just about everything including having my arm wrapped (and cotton first before the foam).
You did good making it that long. I would fall asleep and wake up with intense itching and just start unraveling in the dark. My cat would pounce on wrapping.
As an alternative, I wore sleeve and glove during day, and got fitted for a night sleeve which does not itch.0 -
Maxine,
Wow, you're a lifesaver, much apreciated for any information you can pass on to me.
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I have an allergic reaction but it wasn't the wraps. It was the lotion they used. Good Luck figuring it out. There are different types of materials they can use for the first layer.
I have been sick for the last two weeks. Only I can get the stomach bug twice in 8 days. I haven't done MLD or worn my garments. I did fine this time but you never know if the next time you go without if you will swell. I think it helped that I was in bed.
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have been experimenting for the last 3 days. I have not worn my sleeve or glove and my hand is so much better.
MagsDo you exercise and IF SO...without compression ?!
How long have you been DX/ wearing ... etc etc ?
This just seems so odd to me. Thanks for any add'l info. I am very curious!0 -
Mags20487 I found that there were two issues causing the swelling in my hand. My thumb joint had degenerated to basically nothing and I can't use two piece compression, the glove and sleeve have to be all one piece, custom made. I had an injection in the thumb joint, my LE-t ok'd it and told me what to watch for and do to lessen any issues the injection could cause (and actually I had no problem with it, my hand swelling went down quickly, also made a huge difference with my hand pain). Then I got one piece compression garments, I tried one piece with sleeve and gauntlet and it worked well for a while, but this year had to get the one piece sleeve and glove, helps a ton to have the one piece. I tested the two piece vs one piece out to make sure that it really does help, I only had to do wear the two piece one time to see that it does - with the two piece my hand looked like one of the medical gloves that someone blew up like a balloon!
God luck!
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Maxine - I hate being wrapped, it always gets itchy, but I've never had a reaction like you mention. It could be any lotion used under the wrapping. Did they use kinesio tape under the wrapping, kinesio tape can cause a pretty intense allergic reaction in some, my LE-T always does a test strip of it before she'll use on you on a large area. Because I hate being wrapped, I too wear sleeve during the day and at night a night garment by JoviPak. Love them both. If things are flaring I can wear the night garment during the day, and can even wrap over it if necessary. JoviPak now makes a daytime one piece garment too, that's a little easier to wear (at least from the ads) than the night time one.
Linda
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Pinkhart - Those who know me well weren't thinking I was such a trooper
!! The mental image of your cat attacking bandages in the dark as you frantically unwrap made me laugh out loud because I miss my little buddy and know he would have loved my predicament! I may ask about a night sleeve if the PT thinks it will be necessary. We're still working out things to try for her "problem child" as I have become. If I can maintain some decrease in measurement with just the use of sleeve and gauntlets, then MLD 3 x a week, maybe I can maintain. Remains to be seen.Kittydog- sorry you're under the weather and hope you are up and about soon. I think I also swell less when I'm in bed, so maybe that helped you as well. I showered just before going to get wrapped and she added no lotion, so I don't think there was any extra factors except cotton and foam, but I may be wrong
LindaKR - Saw my PT today and we are going to try with wrap one large wrap over my sleeve for extra compression during the day for the next few days, taking it off at night. I sleep in a UA shirt with a swell spot by solaris for the trunk, but now the swell spot will come out and I'll be wrapping my chest over the UA top. That's fun trying to do by yourself. Lots of on and off thru a 24 hr period but I'm really glad my PT is watching closely and willing to try other means of compression until we find something that can work routinely. Had my second mld from her today and the pain has decreased so much I didn't realize how much it was hurting until it started to go away. Checked with her at today's appointment and no kinesio tape was used, so we're looking for other culprits.
A question about the joviPak garment if you don't mind. Does the one piece garment cover shoulders and upper arm as well? I have a couple of JoviPak crescents for my ribcage and axilla and use them all the time, but a one piece sounds so...so SIMPLE compared to trying to stuff the pieces in and position them around the back of my ribcage. I live alone so many times I find myself chasing my joviPack edge around in circles likes a dog after its tail. A one piece sounds like I could actually get ready for bed in under an hour! Wow.
Maxine
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I actually have not been exercising due to complications from surgery but when I was I always wore my compression stuff. I have had LE for a yr now. Went again today without it and my hand is def holding up quite well and the arm is hurting less every day. I tried to buy an all in one sleeve/glove combo. What brand do you have? My glove is custom made for me but the sleeve is not...just a juzo dream sleeve. I am monitoring it closely and carrying them just in case. Tomorrow we are going on a car trip for the weekend and I will wear it for the ride out.
Maggie
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Maxine - I had to wrap my chest for a while, it was pretty tricky, but I didn't hate it as much as wrapping my arm. JoviPak has all kinds of different styles, they will custom make you things for your special needs. My LE-T had someone that actually went up to the factory and they added where she needed more and it was totally custom. My night sleeve comes up to the shoulder on the outside - here's a link to there stuff, they have them that go over the shoulder, fit kind of like a one sided jacket, will add things for swell spots..... I have the unilateral MX pad (looks like angel wings) and it fits under a sports bra - I know what you mean about getting that thing on by myself sometimes - once I got that though I didn't need to wrap my chest anymore, wear a few nights when I get truncal swelling and it takes it away. Sorry, I just love their products and thank goodness my insurance paid for it - here are some links -
http://www.jovipak.com/order_arm_sleeve.html
http://www.jovipak.com/breast.html
http://www.jovipak.com/vest.html
I have the UE-AG1 Arm Sleeve with the fingers stitched and the Unilateral Post-Mastectomy Pad - UE-BP-PMU. I have a lot of adhesions on my chest and axilla and wonder about using their cherry pit packs - has anybody tried them?
http://www.jovipak.com/basic.html
Someday I'm going to visit their factory
Actually I would like to become a compression garment and MX/LX bra/prosthesis fitter, there isn't really any one around here that can do it - I drive 150-200 miles each way to get to my fitters, think there might be a market here? 0 -
Now for my GRRRRRR. I wrote about my annual physical Jan 30 and showing the nurse how to take a leg bp and fighting for blood draw from foot (not going to happen per lab tec). I also asked the doctor for a new referral to the LE therapist because it has been over 2 years since I saw her and she said I need a new referral, (I can call and she will order the gauntlet without a visit) I took off the gauntlet and showed him the swelling in my thumb/wrist area that is getting worse. He agreed that he saw the swelling and said he would put in the referral. I told myself I would wait 2 weeks for the call from the clinic, but have not received a call from them. Yesterday I called my doctor's office to see if he did put in the referral. The receptionist looked in my records and there was not a note that I even asked! She said she would check with the doctor and have the clinic call me. I will wait until Monday and if I don't hear anything, I will be calling again.
I have tried wrapping some at nights just to see if it helps but not much improvement.
Sheila
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Linda - Thanks so much for the information and the links! I love JoviPak too and the Shoulder-Torso sleeve looks like something I would look into after my PT and reconstruction in June. I love that you are considering being a fitter. The more knowledge out there in the industry provided by patients who have lived it, the better off we all are. Cudos to you for that! I'm sure you will have a market explosion!
I used to sew and have gone back to the machine again, making sundresses and skirts for my next surgery, and have also made two copies of the JoviPak crescent that seem to be working fine for me (by snipping the foam sheet and using the JoviPak I already have as a pattern). I've been thinking of taking on a slightly larger project for a vest next that zips and uses velcro straps or ties to "snug up" for a better fit once on. JoviPak shows such great detail in their pictures that I'm ready to try to reproduce one and if I mess up it will only be about $20 worth of material wasted.
Heres a pic of the first crescent I made. Mine is on the bottom (note the lines are a bit squiggly...think I was having wine for this first attempt! - no more!). I used T-shirt material which I decided was not good for this because it does not always dry in the proper shape. So the next one went into an old dry-wick camping coat lining and washes much better. Also nice against the skin.
alt="" width="505" height="444" />Have a great day all- Headed to my PT now... Not feeling quite so much "GRRrrr" after sharing with you all.
Maxine
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well, shoot! My picture didn't come thru. Still not very good at this! I copied and pasted into the body of the text. Duh. But when I select Insert Pic it requires a url. What evs.
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Yesterday I called my doctor's office to see if he did put in the referral. The receptionist looked in my records and there was not a note that I even asked!
I'm so sorry!
I waited a month ( and 3 phone calls) to discover my fitter was sitting on an EZ order she claimed to have faxed in ( grrrr !)
Lesson learned- from now on I call ppl. the NEXT DAY and say I am just doing a quick follow up call to find out if ....YEP- bet there is a great big giant PEST written in RED on my charts.
So be it.
MAGS
I presume you will wear the sleeve to exercise. If so, you just may be like many others ---- worn/needed just for exercise. Good for you!0 -
purple---that's what I am hoping...exercise and travel will be when I will donn the sleeve/glove for sure
Mags
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I waited until after lunch (about 1:30) and called the doctor's office again. I spoke to another in the front office about my referral. I had a call from the clinic by 3:30 and they can get me in Tuesday at 1:00 pm. I then emailed my coworkers about switching lunches around so I can make that appointment. I normally take my lunch hour at 12, another takes his at 12:30 and the third takes his at 1. The last one agreed to switch lunches with me. I also said I may need other changes over the next couple of weeks, but I would try to avoid their lunch hour. Glad they were able to get me in quickly.
Sheila
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YAY, Sheila!
The squeaky wheel gets the grease!
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I'm too tired to fight with my Onc. I called today to ask for a doctors order to get my blood work done in the foot. The doc assistant said that there is no correlation between having a draw from the arm/hand and LE! I guess I don't have bloodwork done? Why do we always have to fight for what is right...GRRRRRR,
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Interesting news to report! A gentleman called me today from Ambra Le Roy Medical Products, a company that makes shortstretch bandages, gauze, and foam for LE care. They were at the NLN conference in October, and the marketing team is contacting NLN attendees to follow up with information about their products. They are looking for a few patients -- 5 -- to test some new products and provide feedback. You can see their bandages at http://www.ambraleroyonline.com/catalog/c28_p1.html . If you participate in the test, the company will provide a sampler pack of products for free. It would be most helpful if you could review the bandages with your therapist, so the company would get both patient and therapist feedback. If you want to be part of the test, PM me and I'll get you the email address of the person who has extended this offer. (He gave permission to put his email address online, but I worry about spam robots and hate to be part of that happening to anyone.)
I'm told that the Ambra Le Roy bandages are less expensive than others (but I don't wrap, so I don't have any experience buying wrapping supplies)--maybe some of you can investigate, compare, and report back.
Carol
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Why do we always have to fight for what is right...GRRRRRR,
It's incredibly wearying sometimes, isn't it ?
I have had the less than perfect solution - I dont get bloodwork or have my BP taken anymore!
Not sure how long that can last!Carol
That sounds like a great opportunity for some ladies on here!
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GmaFoley, last year when I was going for my colonoscopy, the dr office that was doing it refused to take my bp on my leg, when I went for the procedure, I printed off several copies of 'what we need our doctors, nurses, and healthcare professionals to know about Lymphedema' (from step up-speak out) and highlighted the sections (in pink of course) that I felt were relevant to my situation. I handed one copy to the nurses in the same day surgery unit and handed one straight to the doctor. When I was in recovery, one of the nurses I hadn't seen before saw my pink bands and asked if I brought the papers about LE that were at the nurses station. I said yes and she said that it had great information in it. Glad to hear that they were sharing it and talking about it.
The next time I go to my family doctor's office I will do the same thing and hopefully the lab tec will follow my wishes.
Sheila
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Oh - Gma, Grrrrrrrrr is right!!!!!!
When I had my bilateral carpal tunnel surgery, after BC treatment, they had a protocol in place for BC patients, they put the IV in the foot (the anesthesiologist did do that), not sure where the blood pressure cuff was?, but I know it wasn't on my BC side, and they do have to use a tourniquet during the surgery to temporarily stop blood flow to the wrist, but they had a time limit/pressure limit for the BC side, different from the other side, thought that was interesting. Plus I did a lot of research and there had been no cases of LE worsened by the procedure they were using on me (I had the closed carpal tunnel surgery as compared to the open surgery, much less invasive)
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I'm just forgetting about finding an LE therapist. Since my last post I tried again making calls and thinking I would be able to find someone in MI where I live not happening. I feel so stupid in keep on trying, It's not worth it to put myself through this when the results are not there, don't know why this has turned out this way but I have finally accepted I'm not going to find an LE therapist.
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