GRRRRRRRRR I HATE LE..........

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  • dassi52
    dassi52 Member Posts: 206
    edited May 2013

    You said it, Binney. Hopeless, clueless and dumb! Why waste our energy on them? It's just one of these stories that we can collect and laugh/cry over. It takes all kinds of people, and I have definitely met very nice and caring doctors as well. After that visit I was just wondering what the statistical probability would be of getting LE after 22 years on that hand that was bandaged. Some breed of doctors know it all - at least that's what they think...

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  • kira66715
    kira66715 Member Posts: 4,681
    edited May 2013

    Or they get highly defensive when they don't know it, so they get dogmatic.

    RE: wedding rings, I haven't worn mine since 2008, and maybe should get it resized for the other hand. My DH bought me a thin band to wear when I want to, but once I wore it and my finger swelled, and it hasn't been on since.

    Binney, I gave a lecture to the local gyn oncologists last year on the incidence of lower extremity LE after gyn cancers, and it was quite high, and they were quite surprised. I added the leg/gyn stuff after the head of the LE clinic reviewed my slides and they were all breast cancer related, and she said "Oh, the breast surgeons know about LE, it's the gyn oncologists who snag 50 nodes with the robot who need to learn".

    That lecture, and further research is why I took lymphadenectomy off the consent form--with the strong support of my lovely and open gyn oncologist--for my complete hysterectomy 6 days ago.

    Recently found yet another article that suggested that complete pelvic lymphadenectomy for early stage endometrial cancer confers no benefit to the patient.

    Just recovering here, and waiting for the final path report.

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  • purple32
    purple32 Member Posts: 3,188
    edited May 2013

    Thank you, dassi.

    Yes, the 2nd day I spoke to DR on call who said he didnt understand me having LE because I only had LX and also said cellulitis would be on the left arm >  Yell

    The frustration and stress has been the worst and since I was not actually dx, of course I am afraid to begin activities / excaerbate this , but - we all have to live !

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  • purple32
    purple32 Member Posts: 3,188
    edited May 2013

    Just recovering here, and waiting for the final path report.



    So hoping you get a clean, clear report, kira.

    Be well!

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  • Binney4
    Binney4 Member Posts: 8,609
    edited May 2013

    Purple, you don't need an infectious disease doctor if it's not an infection--in fact, not even then unless there's a repeat infection in a limited time framework. An allergist would be a really good start on figuring this out.

    NO swimming pool until this clears up! Not because I think this is pool-related, but because pools are not always clean enough for us, especially if our skin is not intact. Kira was doing some swimming pool research lately--I'll go see if she'll post about it here. Swimming dries your skin, and you don't need that right now. Make sure when you see the allergist tomorrow that you ask about lotions to use, because getting your skin back in shape is critical, and sooner's better. Alcohol's not so good either, so stick with the antibiotic on skin breaks but avoid the drying effects of alcohol.

    I don't have a problem with PMs, Purple. Don't beat yourself up.

    Hugs,
    Binney

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  • kira66715
    kira66715 Member Posts: 4,681
    edited May 2013

    Recent CDC alert that 58% of pools tested positive for fecal contamination, be careful where you swim
    http://content.govdelivery.com/bulletins/gd/USCDC-7b3feb

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  • Marple
    Marple Member Posts: 19,143
    edited May 2013

    Ewww yuk. 

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  • Estel
    Estel Member Posts: 3,353
    edited May 2013

    Tumeric ...on cereal......



    U.N.B.E.L.I.E.V.A.B.L.E

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  • dassi52
    dassi52 Member Posts: 206
    edited May 2013

    Kira, speedy recovery! I am really impressed that you were able to get this information into the gyns' heads. The more informed our doctors are, the better it is for their patients. And it is great that your gyn was so open-minded. When I had my hysterectomy in 1992, I didn't know a thing about taking out lymph nodes. Actually, I think that with all these surgeries, and especially cancer surgery, lymph nodes are almost automatically harvested, and we patients don't know a thing about possible risks. It would not have occurred to me to research how effective lymph node removal in your surgery is. Because you were so on top of things, you could really make an informed decision.

    Just get better soon and back to regular life!

    Re wedding rings. My left non-LE hand was always a drop slimmer than my right dominant hand. Now with LE, the left side has also gotten somewhat bigger so I can no longer put on my wedding band and engagement ring easily (or at all).  I stopped wearing them. Maybe I'll get a burst of energy to have them made wider.Tongue Out In the meantime, I wear another bigger ring. 

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  • carol57
    carol57 Member Posts: 3,567
    edited May 2013

    I have taken curcumin supplements daily for 18 months (active substance in turmeric), for its widely suspected anticancer properties. If it was a miracle LE cure, I think I would know by now!



    Kira, I hope you get that path report soon, and that is is clear. Holding a good thought for you on that!

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  • purple32
    purple32 Member Posts: 3,188
    edited May 2013

    Okay, thanks very much Binney, kira et al.

    Darn shame about that pool- best kinship and fun I have had all year , but I really do not want to risk a thing...was SO hoping this would be ALL GONE by now.  Still there some, but no worse.(thank goodness)

    *BINNEY...I just realized the appt. I have is with a dermatologist. Would you think I should keep or cancel ?  I am not too keen on it.


    Carol,

    I'd be very interested in knowing what brand and dosage you take. I have  a lot of faith in your research.

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  • carol57
    carol57 Member Posts: 3,567
    edited May 2013

    Purple, I am away for business and I have my little box of meds, but no bottles. I will PM you the details when home in a few days. I am not convinced it works to prevent cancer, but research is very promising, and I take a moderate amount, so I believe that risks or side effects are negligible. Too bad it does nada for LE!

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited May 2013

    Kira great that your op is done. Hope you make a speedy and full recovery. All the best for that path report....and you said...

    Or they get highly defensive when they don't know it, so they get dogmatic. Oh how true!! I could add get so dogmatic that they do it anyway... that is what they damn well shouldnt.

    Carol  did you mention aching aways back... what? Of COURSE we get aching. COunt me in on that.

    Purple Im so sorry what youre going through... I havent read everything (havent spent as much time on the boards) . May I just say this....I wouldn't trust swimming pools as far as I could kick them. FOr sure they are at the very least, piddling pools. I would LOVE to swim but NAH. I don't like the harsh chemicals they use to nullify the flotilla of ????.

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  • purple32
    purple32 Member Posts: 3,188
    edited May 2013

    but research is very promising


    Yes it is, Carol.  I did  a great deal of research on ALTs before LE took over the front burner of my BC since, as you know , I skipped rads , and am  not on  arimidex or tamox.  Many of the alts I looked into were contraindicated for me ( REALLY wanted to take DIM , but it is goiterous and I already have thyroid issues and a goiter ) and yadyadyda...  but  I have looked at curcumin with interest and did not note any terrible SEs- just never followed up so yes, I would be interested in your info. Thx


    Thanks, musical- I am hoping I'm on the mend.  I DO think the pool started all this.  It would be sad to end it as it is a Rays of Hope grop and was going to go into September.  Very scary sitaution though, to be sure.

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  • purple32
    purple32 Member Posts: 3,188
    edited May 2013

    DODGING BULLETS ?

    Left and right it seems (grrrr!)

    went to dermatologist .  He thinks I have contact dermatitis. I told him I have bene in contact whith chlorine , lots of oranges ( I had a  kid in my class once who was allergic to the oils) and PB.  I showed him where I place my hands to "Open the terminus'  (think about it)
    he does not believe  its the pool  .he suspects orange oils.  Asked if there was any way I might have done MLD sometime after eating an orange and not washing my hands good enough.  Certainly possible.  I often will sit and just 'open the terminus' for a brief verson MLD (in between my  regaular daily session as an adjunct) He has me convinced thats it.

    Gave me a stronger cortisone cream RX and CERAVE to moistiurize the skin.Went to work feeling 'happy'.

    Got there, and began art project we are working on all week- must cut small ceramic tiles for hrs.

    Cut 2 fingers !!!!!!!!  UGH UGH and UGH.  Where is my bubble ?!
    So upset!~
    Someone pls tell me if the finger/cut is treated immediately and covered well, the chances of cellulitis are slim (?)  It's in the " good" hand.  I just cannot believe  it.  Must cut these tiles again WED and FRI  !

    UGH!

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  • dassi52
    dassi52 Member Posts: 206
    edited May 2013

    Purple, relax. I have cut myself plenty of times on my LE hand. Taking care of it right away and putting on antibiotic cream should do the trick. Do yourself a favor and get sturdy gloves from the hardware store to prevent injuring yourself with the cutting. I'm talking about the ones all the handymen wear. They are large enough that they will fit over your glove and you get that extra protection. I was happy to hear that your rash was finally diagnosed so it can be treated. And that of course it is not realted to cellulitis whatsoever.  

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  • KittyDog
    KittyDog Member Posts: 1,079
    edited May 2013

    I hope that is it Purple.  When I finally figured out my allergy was truly Eucerin was after my child had used she had come up to give me a hug goodnight and exactly where she put her hands on my arm I had redness..I could make out her hand print.  It all went in the trash.  She now has to use mine.  

    I would not worry about the cut as long as you used your neosporin and covered it up.  Just everytime you think about apply more cream.  

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  • purple32
    purple32 Member Posts: 3,188
    edited May 2013

    Thanks, Ladies....oh yes, I will be out buying some gloves to cut that tile, you can bet on it.

    Thanks- Yes, we really cannot be 100% sure what the irritant was, but I did note immediately the area was consistent with  where I begin my MLD.  I had really been concentrating more on the chest recently too due to the recent mammo.   Additionally,  my LEist rushed in last week and I am not sure if she washed her hands either and she has an area or parychnea on one of her fingers.  This has been of concern to me, but I never waned to say anyhting.

    It's awkward.

    Now , I just want t be carefl and try to protect myself !
    ~Bubble Girl

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited May 2013

    Purple allerrgies are the pits. I feel for you. I agree that as long as you treat yourself with that antibiotic cream you should be OK. I think mine says no more than 3 times daily, but its never failed to fix my scrapes nicks cuts and even burns in very quick time...and thats on my BC side. I have very sensitive skin and allergies. I also agree that a good supply of gloves to suit the purpose are invaluable. Yea I know it's a pain to think of all this, but thats LE for ya. It is a real pain with gloves when you need the fine touch of your finger tips etc, so I have more snug ones for that purpose and Im likely to put a gauntlet on for the duration instead of my glove.

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  • purple32
    purple32 Member Posts: 3,188
    edited May 2013

    Thanks, musical.

    Cant do a gauntlet, but I just got some gardening gloves to go over my farrow.   My lukc and the fingertips peeking out from the farrow would get nipped  :>)

    PS  Check my other post where I  replied to you about  a 'one person' measuring tape.

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited May 2013

    The trouble with my glove is it is somewhat sturdy. Its a Jobst, and the upside is it provides me with the necessary support around the wrist by the ulna, (sp?) but the downside is theres NO ROOM WHATSOEVER inbetween my lil digits. Ahhh theres always the pros and cons. Fortunately I can get away with using the gauntlet because I mostly have no swelling in my hand. SOmetimes I ripp it off altogether if I want to do peel some spuds or something.

    Yes checked other post thx.

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  • Binney4
    Binney4 Member Posts: 8,609
    edited May 2013

    Purple, it's possible to buy Kevlar gloves and sleeves:http://www.stepup-speakout.org/How_You_Can_Cope_with_Lymphedema.htm#Special_Needs_Protective_Garments--dog_groomers,_gardeners,_etc._

    (I think the glove link isn't working--will get it fixed shortly. In the meantime googling "Kevlar gloves" will give you lots of options).

    Really glad to hear the current theory. Orange oil--who knew?!!Undecided
    Binney

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  • proudtospin
    proudtospin Member Posts: 5,972
    edited May 2013

    Purple, I so get the alergies, and figuring them out can be really tough.  Do you know Grannydukes?  Well it seems she is alergic to lavender!  Took her some time but she has now tossed all lavender junk.....hoping she is still better

    play dick tracy!

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  • purple32
    purple32 Member Posts: 3,188
    edited May 2013

    Very cool, Binney!  thanks.  Here's a link if anyone wants a peek:
    http://www.dupont.com/products-and-services/fabrics-fibers-nonwovens/fibers/brands/kevlar/products/gloves-kevlar.html

    I will have to use my garden gloves for now as I need to cut tile WED., and you can bet I will also be using a  LOT more caution!

    Orange oil, maybe.  I think the real ticket is the area...the terminus.  It sure has been touched with ' something' it doesnt like, and as I said , after my mammo I was even just 'opening the terminus a few times a day , in between my uusal AM and PM MLD.  I wont be eating any more oranges - just in case.


    Yes, I "know" grannydukes.  Lavendar , huh ?

    I have not had any of these sensitivities until LE.  Ever since the , I can barely tolerate a pc of masking tape for 1 minute/ so odd to me !
    Thanks so much for all of your support , ladies- I really felt like you were right here going though this (mental) anguish with me.

    I so appreciate you !

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  • purple32
    purple32 Member Posts: 3,188
    edited May 2013

    I mostly have no swelling in my hand. SOmetimes I ripp it off altogether if I want to do peel some spuds or something


    Be careful, my friend!
    "Mostly" and LE is like being a  little bit pregnant. Please keep your hand protected.

    I would never go with a ' totally naked hand' when wearing a  sleeve.

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  • carol57
    carol57 Member Posts: 3,567
    edited May 2013

    DH gave me this glove, which is quite lightweight. Mine fits fine over my gauntlet. http://www.amazon.com/Microplane-34007-Kitchen-Cut-Protection-Glove/dp/B001QXZORE

    I don't know if it's effective against something super heavy like a tile cutter, or super sharp like a razor blade. I use a tool called a lame to slash baguettes before baking, and it's a double-edged razor blade that you thread onto a handle. DH gave me the glove after seeing me change the blade on my lame, but the glove doesn't give me quite the dexterity I need to pick up a razor blade and put it on the handle. So I still do that without the glove. Slowly and very, very carefully!  I have used the glove to hold veggies while slicing them, had no trouble gripping the veggies, but I'm not aware of having fully tested the glove, because I can't recall actually grazing it with a knife while working.

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited May 2013

    Thats brilliant Carol... now lets see what NZ is going to rob me this time ... IF theyre available that is. 

    ----------------------------------------------------------------------

    Binney the first link appears to be dead/outdated ... it gives me ....

    Looking for something?
    We're sorry. The Web address you entered is not a functioning page on our site

    Go to Amazon.com's Home Page

    -------------------------------------------------------------------------

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  • carol57
    carol57 Member Posts: 3,567
    edited May 2013

    Musical, here it is: http://www.priceme.co.nz/Microplane-Speciality-Series-Cut-Resistant-Glove/p-887503888.aspx  

    It's twice the price, plus $5 shipping.  Hmmm. You seem to live in a high-rent district. But I hear it's really, really beautiful in NZ, so it must be worth it!!!

    Carol

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited May 2013

    Ha well remember the other escapade? Like 80 something $'s here for your 16ish over there??? well well things are looking up. Pretty rich when we salivate over twice the price eh? Yes I have to admit it's beautiful here so long as you ignore the hype and the politicians LOL....and thx for that link. I WILL be looking into this very soon.

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  • Binney4
    Binney4 Member Posts: 8,609
    edited May 2013

    Musical, yes, thank you--web mistress is away at the moment but will get it fixed shortly. Sigh! Always something! Thanks, Carol, for the alternative website.

    Of COURSE New Zealand is beautiful--that's where Middle Earth is!LaughingWink
    Binney

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