GRRRRRRRRR I HATE LE..........
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Olearca, what good news! So glad it all went so smoothly. Rest up! Eat brownies. Delegate!
Be well,
Binney0 -
tell me, ladies.. i confess;i've been too afraid to have an iv in my foot yet.. maybe they won't do it; im diabetic.. how do you get to the bathroom, not hit it,etc..hhow bad does it hurt.. tell the truth! (you can pm me, too...).......3jays0
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((3Jaysmom)) U Can DO IT : )
I am new to the whole IV/ blood draws in the foot. Its not that bad.. think...tiny wince. The top of your foot is where they stick u....I had an IV there for the first time with my axillary mass in june....I did not venture on foot with it, but it could be done
Just have the tubing to watch out for, and may have to bear your weight moreso on the heel of your foot. THANK YOU Kay1963, o2bhealthy, tina337, ks1, kira and anyone I missed for your input and support... I have 2 LN in my neck. One is 1cm... the other almost 2cm....AARRRGGAAHHHH!. I don't run on the thin side, but have lost a good 20# since 6/10 w/o much trying.
My Surg ONC wants me to have a PETscan.... best case scenario is its b9/ worst is a new primary or I have gone from DCIS grade 3 to Stage iv...... Its very hard to breathe...I was in a panic on and off for 2 whole daze. Have a hold on myself now.
Thank you for reading, and for keeping me company.
Any brownies with white choc chips? LMK
Blessings
xo
brazos
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Brazos, a huge batch of brownies with white chocolate chips for you as you go through this. How soon can they do the PET?
Limbo stinks.
Kira
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((((((((brazos)))))))))) As Tom Petty says, the waiting is the hardest part. Positive thoughts being sent your way.
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Brazos, waiting rots!
Hugs and prayers, and a batch of the very best white chocolate chip brownies, moist, chewy, warm from the oven...ahhhhhhhh!
Binney
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I've developed a new symptom and want to run it by you ladies before bringing it up with my LE therapist if you all don't mind. I recently had to have my implant removed due to extrusion and all of the issues I was having with truncal and arm swelling have completely disappeared! Now, however, I have this constant aching/pulling feeling running from my shoulder down to my thumb. I could draw a line on my arm with how precisely the pain is located. It is particularly intense right in the inner portion of my elbow. Moist heat therapy seems to help, but stretching is too painful. I've read some about cording on this website. Could this be cording?
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Kay-sorry you had to wait so long to get an appointment. I too believe that an earlier appt. for you would of been beneficial!
Kira-thanks for all your knowledge!!! Just from reading the posts, I have learned so much about LE!
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Sundermom- sounds like cording to me. That's exactly how mine felt. Just give it some time. Light stretching. Mine eventually went away after consistent therapy and stretching. But do not let them manhandle you at therapy...lol. That's what they did to me- pretty aggressive stretching and my swelling started a few days later. =(
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Melanie--my axillary web preceded my swelling also, and I was seeing a PT also, who had me doing aggressive stretches--and it was in the immediate post op situation.
Excellent point--you want a PT who understands cording AND LE: who will help you with stretches and manipulate the cords--but not try on purpose to snap them.
Sundermom: did you get the axillary web link?
http://www.stepup-speakout.org/Cording_and_Axillary_Web_Syndrome.htm
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Had a knee scope today. Right in the beginning, the very first person I saw, was a nurse who said, "I see you've had a bilateral mastectomy. Is there an arm we can use?" They let me wear my sleeve no problem at all - nobody even really commented - and it all went well.
I've got a question about cording. I had little ones early on that responded to PT, then a big honking huge thing that came up during radiation. It runs through my axilla, and at this point it's been there nearly a year with little change. PT stretched it out a litte, enough so I have good ROM, but it's still a sudden pain at end ROM and the root of it is still tender. Is there every any role for surgically releasing it? It's hard to imagine it's a functioning lymphatic. It feels about the same size as the tendon on the outside of the back of the knee. I can live with it, but I guess I don't have to like it.
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Brazos, I found myself holding my breath just reading your post. I will be thinking of you and hope it is nothing. Freakin' BC can kiss my a$$!!
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I made it to the clinic today! So hate being wrapped and I still don't get how it will make the back swelling come down. Anyway my wrap is so loose right now DH will have to help me redo it in the morning. I am ready to find a new LE place. I am know it is my fault I missed last week but emergencies happen and I had no plans on getting sick on top of it. I was suppose to come for three session a week for two weeks. They don't have but one day open next week. What's the point in being wrapped and then nobody checking it out at the end of the two weeks...the only day they can see me next week is Monday. Grrrrrrr. ear full for the PT Wed.
Anway..I am passing Halloween Brownies. I won them tonight at a cake walk. lol and yes I blew my diet and ate one. On me tonight!
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Brazos, I didn't see your post on the last page until after I posted my other post. I'm really, really sorry you've got one of these horrible waits that those of us with cancer get to have. Sending you a hug, if that's OK.
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(((Everyone Here))
Thank you SO MUCH for your thoughts and support. I am still waiting re: the Petscan. I thought I would here from BS Onc yesterday re: its approval. My heart runs outside of my body at times. I try and focus on here and now, and how lucky I have been. I would never thought learning MLD would land me in this sitchy.
Hope you are doing well and HANGING IN....and am lovin the brownies with white choc chips.
Love,
brazos
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Hello Ladies! All in all I am not doing well. MY arm is full and pumping is not helping too much, I need to step it up more often. Of course with it so filled with fluid, I had a (minor) cellulitis outbreak Sat, no fever or hot-to-touch rash, (thank God!) but it scared me enough to start the oral antibiotic. As usual, that lead to a bladder infection and I went to the dr, who said not only do I have a bladder infection, but I am spilling sugar into my urine (it was 270), a finger prick was only 160 though. I have previously "failed" 2 diabetes meds, and my sugar stays around 150 or so, but I have never had it in my urine before. He gave me an injectable diabetes med that I will be starting today (not sure of the name)...Why I write this here, is after researching, there seems a strong connection between diabetes and cellulitis and "bladder infections". So, apparently, keeping my sugar in check is paramount. This kind of ticks me off, cause I have recently lost 10 lbs, and have been doing water areobics 2x a week for the past 2 months, and have basically felt healthier than I have in a long time, then BAM! slam! down for the count...argh! Oh, question: On my lymphedema/cellulits side I have a lot of limited restrictions with my arm/shoulder. If I try and stretch it out myself, I get spasms, and twinging and pain for a long time after, in other words I live to regret it. I wonder if this is from the Rads? It seems like a "deep" kind of cording maybe? Someone says this is probably from the muscle was being burned anyone else have anything similar? and what can be done? Thanks! hugs t
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Oh I'm sorry you're dealing with all that. I don;t have an answer, but I'm sending you hugs.
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me too....3jays((((((((((((((((hugs))))))))))))))))0
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thanks ladies...I though I saw someone on here with diabetes, I wonder if tehy get the cellulitis also???
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Sorry, I am pretty new here. I don't know who the person is with diabetes, but I'm sure someone will come along soon who does.
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Life stinks after cancer treatment.
My LEPT noticed today that my right leg is bigger than my left leg. So my oncologist is suppose to fax over the okay to evaluated for leg lymphedema. Therapist thinks that a node could have been damage after one of my surgeries...gallbladder, ooph or hyst.
On the brighter note. My arm looked much better today and so does my stomach. I had begun to think it was just all the weight gain but it obviously is LE all the way down to my waist and now maybe my calf area on the right side.
Brownies being passed around.
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hi Terri i have diabetes. im really careful, cause i bump, bruise, and cut a lot. i have ms, too, so the balance thing is bad.. anyway; i've not had cellulits; my mother in law has had it numerous times. also has diabetes.. my dermo gave me bactoba salve awhile ago, and i think thats' what tips the scale in the right direction for me. every little snag, cut, gets it, and a bandaid, asap....3jays0
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kitty dog i had no idea the le could go that low to the belly. im afraid mine was there bf bc lol anyway, i hope things get better everywhere, for you.
next payck im gonna get some kimba swell spots.. i can't take the swelling pockets where the dog ears were. i tried putting the "puffy" things you wash there, and wrapped, and it worked!!! of course, the real thing will be even better!!!....3jays
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Awww, Kitty, I am sorry. It is good that the rest is doing better though. Geez, as someone said if it's not one thing it's another.
I've got a question. I got my sleeve and glove yesterday. I was so thrilled to be able to stop doing the wrapping all day and night. Been at it for over 4 weeks. Then when I took it off last night, my hand was swollen. I e-mailed my PT this morning, but haven't heard back from him. I put it on again this morning about 10 and took it off at 4 because my hand was bothering me and I could tell it was swollen. There's a big ball on it. I guess I better stop wearing it and go back to the wrapping all day and night until I see what he says to do? The swelling was completely down this morning from wrapping it last night. What a mess.
Pass the brownines please. (Or better yet some chocolate covered pretzels, pretty please?)
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Kay - have you considered wrapping your hand and then wearing the sleeve? I have to do that with my night sleeve to avoid swelling in my hand...
Kitty - I cannot imagine your frustration! I am so sorry that the LE may have spread to your lower extremities...I have some circulatory issues in my legs and was told that if they got any worse I would need to wear compression hose...that sent me into tears instantly...all I could think of was having to wear a full body compression suit
I think I am a cold weather sweller...I have been hurting ever since the weather changed and am falling into a funk...I am only Stage 1 LE so there is very little visible swelling...I often second guess myself or feel like I am over reacting...of course without visible swelling most of the people around me think I am a hypochondriac and that does not help! I am really struggling with my trunc and the old standbys don't seem to help with the discomfort anymore... I have been tearing up just at the mention of my glove, sleeve or LE in general...
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O2bhealthy, I will try wrapping the hand with the sleeve and see if that does any better than the sleeve and glove. Thanks for the suggestion!
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Terri, I'm so sorry about all the interconnectedness of diabetes and cellulitis and lymphedema. That's just so discouraging!
I hope the new injectable does the trick without a whole lot of new adjustments being necessary. Diabetes all by itself is tough to cope with, and adding LE and cellulitis to the mix just isn't fair!On the other hand, it sounds like you actually headed off the cellulitis this time -- hooray! Sure does help not to have another full-blown go-round with that. YES!! Great save!
I see you have a fur-baby in your avatar -- we're training our daughter's dog to alert to her low and high blood sugars. It's a lot of work, but the dog loves it and it sure is a help. Just a thought!
Kay, yes, for sure don't wear the sleeve again until you see your therapist.
It's great that you know how to wrap, even if it's not exactly what you wanted to be doing now. <sigh!>o2be, lymphedema is real, it's not a mind game. Others don't get it, but we all do!
Hang in there! Kitty, there are other women here with leg LE as well, some from recon surgeries (OneBadBoob comes to mind). It's no treat, but catching it early and dealing with it will make it easier to handle and help keep it in control. Great that you and your team were alert to it! Keep us posted.
Hugs (and chocolate covered pretzels) all around!
Binney0 -
Kitty, my mil has leg LE from abdominal surgery (colon cancer) that they removed some lymph nodes from her abdomen. My husband and myself were actually the ones that recognized it and got her to ask her physician to go to the LE clinic. Although, I don't think that she is doing all that she should be doing or only following the instructions that she wanted to hear or the way she heard it.
Sheila
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I saw my LE therapist this week and am discouraged. All of my measurements on my LE hand and arm (but not the other arm) are up 1 cm from a year ago, and 2 cm from when I was originally diagnosed 2 years ago. My LE therapist says my LE is stable because measurements have to increase by 2 cm in order for it to be considered "real." She gave me a pep talk -- my LE is stable and my arm looks good (although she says I am stage 2), but I don't feel very peppy. My arm may look good now, but if I increase a 1 cm a year, it isn't going to be so pretty in 5 years.
The second thing that has me down is that, she (and another therapist) think I may be one of those people for whom traditional day garments just don't work. No matter how well-fitting my daytime garments are, my hand swells more when I wear them than when I don't. Thinking the problem was double compression at the wrist, she ordered me an all-in-one sleeve/glove daytime garment. Unfortunately, because of bilateral weekness, I can barely get the #$#%& on. And when I do, it ends up slipping down and I get big red marks at the elbow, and still my hand swells.
So, for now, she's got me in kinesiotape and a Tribute at night. She's looking into the Jovi Combi, and perhaps we will try that next. My motion and clothing options will be more restricted with a Combi than with traditional day garments, but it'll be better than wearing a Tribute during the day like I have been doing.
Continuing on with my "woe-is-me" rant, the weakness in my hand is getting worse. It's unclear whether it is due to my BPN getting worse or recent herniated cervical disks, but it is discouraging either way.
On the positive side, the PT seems helping with the pain from the herniated disks. And we finally got heat and electricity back, so I can bake me some of the LE-brownies. I'm thinking hocolate with chocolate chips. Or maybe I'll steal some of my kids' Halloween candy and toss it in. KS1
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Hi All,
Haven't posted here in a while. I have a question. I am scheduled for surgery this Friday and I'm worried about my LE. I plan to write on my arm, no IV, no BP with black marker pen. But how do I handle the swelling that I know is going to happen during the surgery? Should I ask my LE therapist, I haven't seen her in over a year? I'm having a radical hysto because of a recent dx of endometrial cancer (SE from Tamoxifin - or just a very unlucky genetic card ??). My LE is what I'm stressing about. I had things under control until the stress of this new dx. Now...I've been struggling with truncal and arm LE and rashes. I had actually improved enough to quit wearing my sleeve during the day. I still sleep with nightly minimal compression but during the day I can alternate between a brace (tendinitis) and a sleeve. Any thoughts or suggestions would be greatly appreciated.
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