GRRRRRRRRR I HATE LE..........
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Kharimata, welcome! Thank you for joining us and we hope to offer you as much support as you need. I'm sure you'll find some great info and resources here. Binney and Kira are the Best!!!0
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grrrr my leg is very puffy tonight. I guess the heat and travel caught up...just not a good time. Tomorrow is my surgery to release the trigger finger. I guess I will be spending the next few days with my legs up and arm too. lol Anyway. I will see you when I can get on again. Today is also my 2 year cancer birthday..and yes I planned surgery on it. Not sure I share but the spot on my lung is still there and they are thinking it is scar tissue. I do remember during radiation them coming and and telling me they had to get my arm back farther because they were getting to close. So I will repeat the scan in six months thanks to the big C history.
Have a swell free time and passing the chocolate chip cookies. That is what I told my DH I wanted when I came out of surgery. It's my right since I can't have breakfast or lunch tomorrow....12 hours is so long not to have drink for me...getting ready to take my last sip.
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i did my "swallow test", and the result wasn't good, awhie ago.. i walked out of the room, and told my DH dunkin donuts.. fast!!!he just laughed.. they make homeade with choc covered near us.. that , and coffee.. the nectar of the gods!!!
good luck with the surgery, Kitty dog.. i hope you get the relief you need...3jays
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Keeping you in my thoughts KittyDog. I hope healing from surgery is unevenful and highly successful.
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I am thinking about you today Kitty and hope it all goes well. Make those gigantic chocolate chip cookies!
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Kitty ((((HUGS)))) - hoping everything goes smoothly today and easy healing. Here's to a giant batch of cookies waiting for you.
Catherine
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Kitty- Good luck with your surgery today. Enjoy those cookies, too!
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Kitty, best of luck with your surgery.
Well, I am reeling with shock. I went to the BS yesterday to talk about prophy mx for my non-cancer breast. He talked about doing what we could to avoid SNB since I have LE on the other side. I was expecting to have to grill him on that but he brought it up before I could even ask! He's having me go for a mammo, U/S, and MRI to see if there are any "surprises" waiting for us. He said if there's nothing suspicious on any of the 3 imaging tests then the chances of something being missed that would have already traveled to the nodes is so low that we can skip the SNB. I can see he "gets it" that even SNB increases the risk. I'm planning to talk to my onc about the need for it, also. I figure that even if something is found, I'm already Stage IV so I don't know if my tx would be changed with a new primary. If it would be then the SNB might be necessary but if the tx wouldn't change then there would be no need for it. So we'll see what happens.
Leah
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Wow, Leah, common sense prevails! That's great. I had 'only' SNB and got LE as a result, so I'm in your cheering squad for avoiding that SNB unless absolutely needed to plan/improve your treatment outcome. I wish all BSs were as knowledgeable and as willing to take the 'whole you' into consideration. You are well informed so would have asked the question on your own, but I'll bet the majority of patients, especially those without existing LE, would not know to press the question or to even ask it, for that matter. Now let's all just send positive thoughts your way that no 'surprises' pop up on any of that imaging.
Carol
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Leah, great that the bs is aware of LE and will work with you to reduce the risk! You must feel you're in good hands.
Hoping for unrevealing tests, uneventful surgery and quick recovery.
You'd appreciate this: I fought the concept of a colonoscopy and finally scheduled one--for the first night of Passover! I didn't know until last week. So, why is this night different from all other nights?
Kira
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Leah, that is great news about your BS. Guess some are *finally* getting it. Maybe all your persistence has paid off. I do hope you get good news and no further surprises.
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Kira, what timing! When we say in the seder, "Let all who are hungry come and eat" we don't mean "hungry 'cause you've had colonoscopy prep"!
Leah
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Kitty, best wishes for your surgery today and a speedy recovery. Hope your leg is behaving and feeling better, too.
Leah, thinking of you, too, and it is wonderful to hear that your BS is on the ball. I am one that got truncal LE from "just" a sentinel node biopsy, so if it doesn't make any difference with your treatment, I'd agree it's definitely worth it to avoid.
Kira, gee, thanks. :-/ I have been skirting the colonoscopy for several years, as I just couldn't handle one more thing with the chronic pain I had. No excuses anymore, so, I might have to bite the bullet. How are you handling the IV and BP issues? I would want neck IV, and calf BP, and I sense that this might not be easy to arrange. I will wrap my right arm, but I really shouldn't have an IV or BP in left either. Maybe I will wrap that one, too. Hmm.0 -
Another colonscopy avoider here too. Now, it's on my to do list. Such fun. I used to take such pride in keeping up with all my health appts. Loved knowing I was on top of prevention and checking off my to do's (I'm type A, can you tell).....now, I dread any appt - hate the whole "don't use my arm" thing and the fight that ensues each time. So, now, I don't mind the colonscopy but I dread the arm IV, BP etc. and would almost rather avoid it altogether (which is denial of course). Well, Kira and Tina, at least you've reminded me that I NEED to do this.
Catherine
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KittyDog! Prayers for all good healing, hand and leg both. And wishing you fresh-from-the-oven chocolate chippers!
Leah, what a relief to be in the hands of this knowledgeable surgeon. It'll be good!
Tina, I wrap both arms and they have a terrible time figuring out how to put an ID bracelet over it
! Onward all you colonoscopy shirkers -- we're all right there with you! (Hmmm, I was going to say we're all behind you, but that might not be wise...)
Binney0 -
Hello to all ladies here. It's been a while...KittyDog; hope you are doing well.
I have to admit, I was a colonoscopy shirker as well until a couple of months ago. It really was not bad at all. I tried to look at it as a "cleansing". Just do it! I had five polyps and was glad to be able to have them removed. The doctor told my son (early thirties) to have an initial test by the time he is 40 because of my history and my father's history of colon cancer as well. Dad is going to be 86 in May and doing well.
I NEED INSIGHT PLEASE. Has anyone had reconstruction after being diagnosed with lymphedema? I really want to have reconstruction but I am concerned that surgery could result in more problems. I will be going to another PS consult in April. I will be three years out from diagnosis in April.
Thank you. BarbaraJo
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BarbaraJo, I'm planning to have recon when I have my prophy mx. I'm planning to go to my LE PT just before surgery (don't know when it will be yet) for a treatment so my lymph system is in as good shape as possible. At that time I'll also ask her to show me how to do MLD in the face of a new physical reality.
We can hold each others' hands through this (and hope they're not "swell" hands!).
Leah
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I had a colonoscopy and endoscopy at the same time last October. I am only affected with LE on the right side so they had me leave my sleeve on and used my left arm. It only took about 30 min. The worst of course is the prep. Had one polyp so have to do it again in five yrs. So no more shirking!!
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BarbaraJo and Leah, I had free flap autogenous reconstruction (DIEP) despite mild LE. I was very lucky to have significant improvement in the LE following surgery. If you want more details, please PM me and I will be happy to answer any questions.
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Ladies............. I just wanted to pop in and say.......... I hope you are doing good....
LE STINKS this time of year..... bring on the heat........ ( WHICH I LOVE.... but LE HATES)
Ill tell you a..........grrrrrrrrrrrrrrrrrrrrrrrrrrrrrr
I put a tank top on the other day......... looked pretty cute. NOT...... got a glimpse of the LE arm.... and........ no one else could see it was a little larger than my other arm...... BUT... It looked like I had cellulite. IN MY ARM?????????????????///// OK........ so I know we woman get it in our thighs and butts............ maybe as we age....... stop working out.............. gain weight....................... but OUR ARMS??????????????/// BOO HOO HOO.......... It pissed me off terrible. My LE arm looked like the back of my thigh.................LOL ................. GRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRr
I hate aging........................ but I hate LE more!
Take care of yourselves............... and listen to Binney and Kira..........................
Love Love Love!
Laura
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Laura- I also have the "bicepulite" as I'm calling it. I was hoping it was just from packing on the pounds since this adventure began. Don't tell me that's LE, too? Crap! I was getting out my summer clothes yesterday. (I live in Phoenix- it's already summertime here- lol!) I think anything sleeveless went in the goodwill pile or the stepdaughter donation pile. Now I'm dressing like my mother covered up from elbow to ankle. So you have my sympathies!!!!
Well, after "talking" to Binney I've come to realize I was not getting optimal care from my LE therapist (far from it) so have "fired" her. I had some concerns and Binney confirmed them. (Thanks Binney!) So now I have an appointment on the 11th with a new one who happens to be hers as well! (Wonderful coincidence!) The good news is she's only 25 minutes away not 50 so, hey, saving on gas money!
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Kate, Lucky you, because Binney has waxed positively poetic about her LE therapist! If you can get the cellulite question into your therapy appointment discussion, please share the answer here! I have the same issue!
Carol
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I laughed out loud at the "bicepulite" remark. Thank you Kate. I am part of that club as well. I agree with carol57 'lucky you" to be able to go to Binney's therapist. Even better that she is closer to home. Gas is hitting 4 dollars here in Lancaster County.
Leah, good luck with your recon. It sounds like you have a great PS. I hope all of your pre-tests are uneventful.
Jerusha, Improvement after surgery? I'll PM when I can, thanks for answering.
Right now this cinder block on my shoulder is making it hard to type.
Some good news though. I''ll be picking up a prescription for compression garments today. I have already been measured last week when I picked up my new sleeves. I NEVER thought I would be saying this as I always loved having pretty bras but I can't wait to get these compression garments!
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just wanted to let you know surgery went well. so far very little swelling and my bandage is actually loose. i get to take it off sunday. my throat and chest-abdominal muscles hurt worst than my hand. i am going to ask him did he make me do sit up while i was asleep. anyway thanks for all the prayers and well wishes...pain pill is working again.
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Hello everyone ! Thank you so much for the good advice Binney, and thanks everyone for the nice welcome. It seems to me that this is a very close and warm forum- with intense friendships... it is nice to see! I was some time at home and I spent a lot of time visiting doctors, surgeons, kinesists etc... Over one month I visit the last one, I will keep an update at that time. I don't know if it is true, but everybody tells me that in the near future there will be more possibillities for LE to treat (due to genetic info, better microscopes, and the options with the growth factor that this Finnish company is testing).
Apparently they are doing genetic tests on people with the primary condition. I told the doctor, me , my mother and my grandmother have it... which is strange because mostly you inherit it (but it is not common to have it in every generation). All 3 of us need to do the genetic test. They hope to find more insights this way. I truly hope that it will help to develop something, I don't have chilldren yet, but I hope at least they find something so it can help my chilldren -since there is a big chance they will have it too.
To put it positive : at least my LE is hopefully usefull for something
(that's the only positive thing i can say about it unfortunately... 0 -
kharimata, you made me realize that I had no clue how primary LE is inherited, and there is a study that indicates that some women with secondary LE share a gene with primary LE--so there's an underlying genetic predisposition:
From the Pittsburgh Study Site
http://www.hgen.pitt.edu/projects/lymph/inheritance.php
Lymphedema Family Study : Inheritance Explanation
Lymphedema is the swelling, usually of an extremity, resulting from poor drainage of fluid out of the body's tissues. There are two types of lymphedema. Although the cause is not well understood, primary lymphedema is thought to result from an inherited abnormality of the lymphatic system. Secondary lymphedema is the result of a damaged or blocked lymphatic system caused by traumas such as surgery or injury.Primary lymphedema has been estimated to occur in about one in six thousand people, more often in females than in males (Dale, 1985). Age of onset tends to be similar within families. Primary lymphedema can be present from birth (congenital lymphedema or Milroy's Disease), symptoms can begin at the time of puberty (lymphedema praecox or Meige's Disease), or onset can occur in adulthood (lymphedema tarda) (Lewis and Wald, 1984).
Primary lymphedema seems to be inherited in several different ways. Milroy's and Meige's Disease are two forms of primary lymphedema that tend to show swelling below the waist and are dominantly inherited in some families. Milroy's Disease (congenital lyphedema) is characterized by swelling present from around the time of birth. Meige's Disease, also known as lymphedema praecox, may appear suddenly around the time of puberty (Wheeler et al., 1981). When the first signs of swelling appear after age 35, this condition is called lymphedema tarda. A recessive form of lymphedema has also been described, as well as lymphedema in association with other traits (syndromic lymphedema).
Except for genes on the sex chromosomes, both men and women have two copies of each gene. If only one altered copy of a gene (mutation) causes a condition, the condition will be inherited in what is called a dominant pattern. If an individual has a dominant condition such as Milroy's or Meige's Disease, the chance of passing the gene to a child is 1 in 2 or 50% with each pregnancy. These odds are the same as getting "heads" in a coin toss.
Dominant disorders are ones that run from generation to generation or are passed along through the family. If a person has the gene for a dominant form of primary lymphedema, there is usually a 50% or 1 in 2 chance of passing that gene on to his or her children. However, not everyone with the gene for this form of lymphedema will actually develop symptoms. Therefore, even if a child does not inherit lymphedema from a parent, he or she may still have inherited the gene and pass the gene that causes lymphedema on to a child. Although we do not yet understand why this "reduced penetrance" sometimes occurs, it is more common in men. In other words, a brother would be less likely than his sister to have symptoms of lymphedema even if they both inherit the same lymphedema gene.
We hope a new understanding of the genetic basis of inherited lymphedema will provide insights into its treatment and contribute to early identification of individuals at risk.
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Interesting about a possible gene making us predisposed to LE. It makes so much sense since some of us get it and some don't. After I developed it I contacted some of my PS's previous patients to see if they've had any adverse reactions to him using the axillary incsions like he did on me. So far, I seem to be the only one who has had issues. Guess I got the short straw, huh?
I agree with kharimata- This does seem to be a very close and warm forum. So glad I found it. Takes the sting out of LE just a bit. (((hugs)))
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kharimata, it's good to hear from you, and we'll look forward to your update. I do agree there are many new ideas being worked on that should make the future better for lymphers, and particularly for those with primary lymphedema.
I love that you've found something about lymphedema to be positive about!
We do have to look for all the encouragement we can with this condition, and knowing you're contributing to a better future for lymphers is a great way to ease a little of the frustration.Let us know what you discover!
Binney0 -
Kitty dog, so happy to hear surgery went well and wraps are loose. Take those pain pills and get some rest and healing. You cracked me up thinking about your surgeon making you do sit ups during surgery. If only it were that easy. You just go under and they do all the work for you. Now, that's exercise I could live with.
Kate, nice to *see* you. Sorry the first LE PT was not the one, but sounds like the next one will be. Thank goodness you have Binney's wisdom and experience. I LOVE the term bicepulite! I seem to have it too so like carol, will be anxiously awaiting any answer your LE PT can give you.
As for genetics. I can't help but think genetics are in play. My mother has horribly disfiguring arm LE from a radical Mx with complete ANLD and rads. She has never been good about taking care of it, but also in her defense, there wasn't much info or help to give her 15-20 years ago. I am actually hoping she may be a candidate for Lymoh node transfer as she really has nothing to lose and everything to gain. I developed my LE 2 months after SNB, so I have to wonder if there aren't genetics at play. Guess it doesn't matter but it would be nice to think if there's genetics, that maybe they could find a better therapeutic treatment.0 -
Kitty dog, so happy to hear surgery went well and wraps are loose. Take those pain pills and get some rest and healing. You cracked me up thinking about your surgeon making you do sit ups during surgery. If only it were that easy. You just go under and they do all the work for you. Now, that's exercise I could live with.
Kate, nice to *see* you. Sorry the first LE PT was not the one, but sounds like the next one will be. Thank goodness you have Binney's wisdom and experience. I LOVE the term bicepulite! I seem to have it too so like carol, will be anxiously awaiting any answer your LE PT can give you.
As for genetics. I can't help but think genetics are in play. My mother has horribly disfiguring arm LE from a radical Mx with complete ANLD and rads. She has never been good about taking care of it, but also in her defense, there wasn't much info or help to give her 15-20 years ago. I am actually hoping she may be a candidate for Lymoh node transfer as she really has nothing to lose and everything to gain. I developed my LE 2 months after SNB, so I have to wonder if there aren't genetics at play. Guess it doesn't matter but it would be nice to think if there's genetics, that maybe they could find a better therapeutic treatment.0
