GRRRRRRRRR I HATE LE..........
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Thanks to all, it was his primary doctor who cancelled his surgery not the surgeon. The thing is he has been anemic for several years due to low kidney function. His kidneys are not producing a hormone that helps the body make red blood cells. His kidney doctor sends him to get a shot to help his kidneys at the dialysis unit every week even though he does not dialysis.
Sheila
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Help? Does anyone have a razor solution to recommend? I keep hearing that I should use an electric for my pits - but the one I got is lousy and doesn't really work (it was cheap). Does anyone recommend new razor blade each time vs. electric and if electric - a brand? what about neet or other chemical lotion? What about laser? Can I do that?? Ack. Thanks in advance. Catherine (still learning how to manage all of this)
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olerca - I use a razor for my pits...I am just very careful because I still am numb and usually have to do it out of the shower since I cannot see without my glasses
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I just use a regular razor very carefully. I don't have very many hairs probably less than 5 on each side. I was really bummed when they started growing on the radiated side.
I have an electric razor but I ended up with razor burn & didn't cut the hair that close to the body. So I just use a regular razor.
Funny thing, I have to have DH help me see the hairs because I can't see that close up anymore. Told him he has to check me before I can leave the house.
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Olerca--I used an electric razor for women once and had really bad razor burn. I asked for advice on this site and am now using a regular Venus razor. I use shave cream. I use antiobiotic soap right after and put on antibiotic ointment right after for the rest of the day. I throw the razor away each time but someone (Binney I think) said to put in the dishwasher and reuse. So far I have had no problems. Becky
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Olerca--To add. If you go back up to April 25 where I started a discussion on shaving, you may find some more tips. Also on www.stepup-speakout.org talks about shaving. Becky0
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I was wondering if as the years go by (without arm lymphedema) do the risks of developing it diminish or does it always stay the same life long...anyone know?
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Cocojo, my mom is 10 years out this month from her surgery (removed 15 nodes). The first of this month she was bit by a mosquito or another type of bug on the inside of her elbow and now has mild LE in that arm. So the risks don't really diminish, despite what some 'professionals' say.
Sheila
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Kira, a belated CONGRATULATIONS. Thank you to you and Binney for your advocacy of LE and especially for sharing your expertise with all of us here. Kira, I believe it was you who mentioned in a recent post that it was harder to cope with LE than BC. I agree completely. LE is much more challenging than BC for many reasons. I am grateful for the support and knowledge I find here.
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Thanks Nicole, and everyone who wrote such kind words.
I totally agree that LE is harder to cope with than bc.
I'm going to the first board meeting in a couple of weeks, and if I'm any kind of LE expert, it's completely due to the women on these boards.
And, as I quote Binney all time: "Have I told you how much I hate LE?" If I wore the tee shirt, only a select club would get it.
Kira
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Kira,
Congrats on your new "national" journey!!! With you speaking out for us "it" can only get better! I am anxious to hear more about your endeaver. I will have to keep checking in. I am also one who totally appreciates all that you do here. I do not know where I would have turned without you gals. You are the ones who taught me everything I know about LE.
It has been awhile but I came back a week or so ago to try to catch up. I am still going to therapy once a week and it does help. The cinder block that was on my shoulder is now a brick.
I hope only the BEST for ALL of you.
Barbara Jo
"Have I told you how much I hate LE?"
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For the very first time, today I broke down and cried over my LE. I didn't sleep well last night and had a 10:00 appointment for my bra's and a foob. She updated my charts, I got undressed and she measured me. I was telling her about how swollen I had been since vacation. She left me to go see what bras she had in my size...so I thought. She brings in the other fitter and they tell me they are sorry they can't fit me until I get the swelling down. #$#$#$ It just doesn't seem like I will ever get a foob. She also informed me because I told them it was also time for a new sleeve and glove that she wouldn't do those either until the truncal swelling was down.
I saw my oncologist two weeks ago and she was putting in a referral to the LE Clinic. I had not herd from them and I didn't have the phone number so I drove over there to see what the hold up was. They never received the referral. LIVID by then. Even madder when she tells me the first appointment to be reevaluated was Oct. 3. GRRRRRRRRRRRRRR and more tears on the way home. So with two week waits may be lucky to get my stuff for Christmas.
On a happier note, tonight was our first LE Support meeting since May. It was just me and another BC patient. We talked with our PT for much longer than our meeting time. It felt good to hear somebody else having the same issues as me.
GRRRRRRRRRR I had an Oreo McFlurry and feel better.
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sorry they're making it so hard for you, Kitty Dog.. i got a shaper thingy that is helping greatly with my truncal. the heat is the problem for me. and, BTW; my ins paid for the gloves and sleeves while i was swollen, and when we got it under control; they paid for others, when we got it under control.. ck with your ins. coverage.....3jays
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I am sorry you are having so much trouble Kitty Dog. Hang in there. I am jealous you have a support group to go to. I hope to start one here in Knoxville since they don't have one. It would be good to talk to others face to face. I hope you have a better day today. Becky
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Michelle, Norma, Becky and Binney - thanks so much for the razor info. I had to laugh at the "can't see all the hairs" any more comments. I've often said that losing our eyesight is actually a nice balance to aging - so when you look in the mirror at your face, you think "hey, I look pretty good today" ....and then don't realize you have a big ole hair growing out of your face that you just can't see!!
i am going to try out the Venus razor and the dishwasher trick! I just can't get the hang of the electric and the numbness is just too hard to deal with. Thanks everyone!!
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Kitty Dog,
I hope you feel better since you had a cry. I have a foob and a couple of bras just waiting for a spot other than my closet. It is a big one though. I think it is a 10. I wore 40 DD or DDD. I will be happy to send them to you.
Threejays is right about the shaper undergarments, they really do help.
BarbaraJo
It stinks when you are ready for a treatment and something gets in the way. This time for me...the RS told me I was too obese to have surgery!!! She told me I need to lose 20. I bet she doesn't weigh a hundred lbs!
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Kittydog - I, too, am just so sorry. I don't have the truncal LE but I do know the frustration and the tears. What would we do without this forum?! ((((HUGS)))))
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Here is a question...why can't we wear day sleeves at night?
I fell asleep wearing one, and my arm looked pretty good in the morning? Much better than with the juxta!
I'm talking an older, much worn 20-30.
I do wear the silverwave 15-21 sometimes as well.
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Cookie, supposedly because they can twist and form a tourniquet type action. Binney would know the full reason.
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Thanks everybody. I do feel much better today. I slept great last night and that helps a lot.
I am ordering another foam foob because the one I have is just deteriorating.
Barbara before surgery I was a 38D or 40D. My sports bra that they fitted me in after surgery is a 42C-D. Since gaining the darn weight back it is a little snug but since it is Cotton it does stretch out. I now am regretting that I cut the tag off this foam one. So I have to clue which brand I bought.
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Well I think I'm over the first hump with LE. According to measurements, the swelling in my arm has dramatically decreased and I can now feel my wrist and thumb again. It's also no longer warm to the touch. I'm just wondering if this whole episode wasn't fueled by the capsular contracture of my implant. I had surgery to release the capsule on Tuesday and my arm feels perfectly normal today. My therapist also applied some Kineseo (sp?) tape on my back to help things drain in the right direction. I've had the tape on for a few hours now and I can already tell a difference in my shoulder and in my armpit. Am I being overly optimistic here or is it possible that things could already be resolving?
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Today I got my compression sleeves from Lymphedivas - they are awesome, not only do they look really cool, they feel better than any others that I've ever tried. Check them out, I think that I'm only getting mine from here from now on - http://lymphedivas.com/
sundermom - my CLT uses kinesio taping too, I was really impressed with the way it worked. Not only did it help with the LE, but it helped with some of my pain issues too.
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For my DIEP I went to New Orleans in Jan 2010. Like the rest of you, I've developed LE. I also have a small bulge near an incision line which I wanted to have looked at. Instead of going to New Orleans again, I chose to visit a DIEP doc who is local, here in Dallas. Very nice guy overall. In the workup, I mentioned to his PA that I have LE. She gave me a shocked look and said,"You are one of those rare ones who got it!" She shook her head and left the room. I'm probably extra touchy about this, but after having my BS tell me her patients never get it, and my primary insisting I couldn't have it because I did not have ALL my nodes removed, etc, I just cannot take the denial or the ignorance. I'm glad to have found you all...... you "get it" in every way.
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ok, so i've missed a lot of pages, but whats' the venus and the dishwasher "trick" cause I use the venus ( its' $$$) so if i can save, im in.....
it was good, last week, chrissy b. was staying with us. first woman with le who's seen me. she said after we were out one day.. we got home, showered, rested, met in the hall..and she said "wow" you are so swollen from the heat.. both arm, hand, and truncal was flaring.. it was great to have someone who "gets it " see it. my poor DH has NO idea, even when he's looking at it!!!
at least i know its not all in my head...hahaha3jaysPS better now, sleeping with arm way raised at night...
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Kitty Dog,
PM me if you want to talk about the bras & prothesis I have available. In the mean time I will double check the sizes. If the bra is a 40 you could always use an extender hook if you need to. I really would be glad if it was usefull to someone else.
I do remember reading about a woman who collects products and sends them out to others in need. If the size I have isn't correct maybe she would have something for you. Anyone know who that is?
LindaKR...I loved my first "diva" sleeve. They are great when it is really hot outside; they breathe so much better. There was a sale in early spring where I bought 6 for around $200.00! If you order again ask about the specials which are not always listed. There was a special price reduction for ordering three. What pattern did you get?
Lately I have been wearing my Juzo sleeves more often. Seems I have to fold down the top of the diva sleeves. I think I stretch them too far and do not get an even fit. What is your feeling on that issue?
BarbaraJo
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Barbara Jo50 - my other sleeves are Juzo, and Elvarex custom sleeve, they both seem to make their way down my arm if I wear them all day. The Diva one seems to stay in place, I did get the stuff inside that helps them stay up. I notice that the Diva ones do stretch more than the others in length, since I've only been wearing them two days now I'll have to give it a little more time. My OT/CLT showed me how to use a rubber coated garden glove (you can get them real cheap) to push/adjust the sleeve, it works really well and doesn't damage the sleeve, it kind of sticks to the sleeve so that I can adjust it, and I get a more even fit when I use it for donning the sleeve.
kcshreve - it's crazy how little medical professionals know about LE. I may have mentioned this before, but when I talked to my RO about the fact that the OT/CLT said you shouldn't have deep tissue massage on the side that your MX/RADs/LE is because it can trigger LE, she started off telling me how the OT's and PT's didn't understand that the cancer couldn't be spread that way (what the heck?), finally I got her to listen and told her that it wasn't cancer spreading that was the issue, it was that it could trigger LE - she went silent and had this shocked, aha look on her face. I think she might have understood, finally. Her medical assistant told me that in order to avoid getting LE during radiation you should start at your fingers and massage your arm upwards really hard???? One OT told me there was nothing you could do until you had quite a bit of swelling???? My BS said it's not that much bigger than the other arm, why are you worried. And another friend went to a different PT and was told to come back when her arm was big, otherwise don't worry???? It would seem that people that work with women with BC every day of their freakin lives would at least have a basic knowledge of LE, but it doesn't seem so. I'm very happy that my PCP & MO are all willing to listen and learn, and when I explain my concerns, and sources to them, they listen.
Sorry about the rant!!!!!
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Linda, don't apologize for ranting
-- that's why Estepp titled this thread GRRRRRRRRRRRR!!! Brava to you for educating your doctors!
Together we can make a difference!3Jays, I think they're referring to the suggestion that you put your razor in the dishwasher to sterilize it, so you lower the risk of infection from a nick or abrasion from reuse of the razor.
Big hugs,
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Linda, those stories gave me a very sick feeling in my stomach.
Turning the corner on these recent flair. I can tell its getting better and the LE therapist was very happy with my progress today (not as happy as I am to have found her!)
I'm so encouraged, really looking forward to DS's wedding next weekend, feeling good enough with this most recent LE improvement to look forward to it and being able to do things. The glove and I are even coming to a relationship of toleration with each other
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Hey ladies.
I saw my LE PT for the first time on Wed. She gave me lots of exercises and I will see her again on Monday. That is when she will do the massage and wrap me. I am going to be sweating like mad!! It is suppose to be near 80 next week and the hot flashes are bad as it is!!! I won't get fitted for a sleeve until a month out of chemo as the steriods are bloating me out like crazy!! My face is all round and puffy!!! I don't want to get fitted for a sleeve and then have to get another one when the puffiness and swelling go down.
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Mom is doing well with her sleeve, I have been putting it on her every day this week, I have learned how to put it on her. We put a layer of lotion on her arm then put the sleeve on. I told her that when she is putting the lotion on to always rub toward the shoulder to prevent pushing the fluid into the hand, she hadn't though of putting it on that way. She thinks that she will be able to have dad help her get the sleeve on, if I show him how to do it. She said that she can tell a difference when she doesn't wear it, her arm feels different.
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