GRRRRRRRRR I HATE LE..........
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Thanks Laura-there are a few that are interactive with me. I guess it is just pot luck! People click with who they feel is most like them I guess. When I went on the Nov chemo boards I noticed that the girls gravitated to the ones that were having the same chemo's as them. So I don't go back there very often. I have found a few people on Abraxane that have been very nice though. No biggy really-I always say you only really need one good friend!
Trust me-I do have LE so I won't be leaving here for a long time!
You have such a beautiful face, why wouldn't you have more close-up shots??
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estepp, health care reform doesnt mean "free" it just means controlled. they decide if we get treatment, scans and... if we die...dont mean to be a bummer, but my health care may be dropped due to the reform, my husbands employers rates went up so much due to the new rules and rates caused the governental changes that they are now condiering excluding spouses, which is why i have to rush into my reconstruction surgery...HUGS TO ALL! terri
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Kira - I just now read your post about truncal lymphedema. You don't know how much that information helped! I thought I was going crazy. I have been to three different oncologists, explaining this feeling to each one and being ignored by each one. I finally just gave up on go to one that I despise because I just had no hope of finding one that treats me as a human being. I have two degrees in areas of the medical field and can understand a lot, IF I'm given some information. Since my arm wasn't swelling, each one said I didn't have lymphedema. One suggested I "see someone" to talk about my inability to come to terms with having cancer. Yes, why don't you just kick me while I'm down anyway! I've poured over literature and books without finding much of a clue until I clicked on this thread. Thank you so very much! - Kay
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((EVERYONE HERE))
Am behind in posting here. Just read up on everyones journeys...
I thought of all of you yesterday when I went to see my BS for my 1st dreaded 6 month check up s/p BMX......
I told him about the 6 weeks of LE/PT, cording and myofacial release, scar release.... The residual cording I have in my chest and scar he denies is cording. He denied I ever had Axillary Web Syndrome... or that I even have subclinical LE or am AT RISK FOR LE. He denies that my armpit swelling and fullness after increased activity is LE related. He denies my r arm burning and aching on the CA side is r/t LE even tho it is relieved by wearing the sleeve/ glove . He told me that I am as at Risk for LE as he is.
So I have LANA certified LE/Pt telling me that BS's are often butting heads over the LE issues.
So I had to go into my RN mode, and Advocate for myself as NO ONE IS ON THE SAME PAGE for alot of things in the Breast Cancer Realm. I asked my BS how much time he spent studying LE in med school.... he tells me HE CANT REMEMBER.
Much to his dissMAY I asked him for a Prescription Order for NO IV's / BP's/ VP's for both my arms. He told me this was NOT needed as I had no nodes removed. I told him that it is a Nursing Call/ LANA LE/PT call.... for all Patients with BMX; and I am asking based on my Nursing Judgment and EVERYTHING I HAVE LEARNED HERE.
I also had to ask for a script to get a sleeve for my other arm....for flying. Even tho my reality was totally denied. He did give it to me.
I was in FUNK LAND yesterday. Am alittle better today.
I thought of each and everyone of you.
(( Blessings and NO SWELLS ))
Here are some brownies with choc. frosting!
xo
Brazos
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Brazos, you should change your name to Brassy. Kudos to you for standing up to your BS, getting what you need and educating him in the process. I have been lucky with my onc, PS, BS and nurses in the hospital and at my clinic. They may or may not know a lot about it, but they respect my requests and my PCP even gave me an Rx for antibiotics when I went on a fishing trip. MMMM, frosted brownies.
KansasKay, Never has any one of my medical professionals suggested I get counseling to come to terms with BC coz I thought I had LE. Wow. That is really lame.
IMC, when I first came to the boards two years ago, it was hard for me to find any threads where I felt people were relating to me. I think some of them are a little bit clickish. But, I have to say my chemo thread was and is still fantastic. Most of us had the same chemo, but some did not. It didn't seem to matter. I checked out several sites when I was first dx'd and this one has been the best by far. Anyway, we're here for you.
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KansasKay: please check out some of the truncal LE threads--Binney has written beautifully about how she thought she was going insane--from the pain and lack of diagnosis--and she met her LE therapist who said "you're not crazy, you have truncal LE".
We've adopted a phrase "denying my reality"--it started when my younger daughter had migraine associated vertigo--so severly she was hospitalized at 15--a severe episode precipitated by the flu, and although the ENT recognized what it was, the pedi neurologist didn't know what it was, so rather than work to figure it out, she discharged her--no better, and said if she didn't get better, she needed a psych consult. And my daughter said "She's denying my reality."
All the neuro had to do was google it....
http://emedicine.medscape.com/article/884136-overview
Your reality is quite real, and telling you to learn to adjust to it, is a low blow, IMO.
I'll bump some threads for you.
Brazos--good for you! Asking how much he even knew! Awesome!
Kira
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Brava Brazos! Your report is so heartening (but it's no trick to imagine how the encounter must have left you flattened!
) Kay, the suggestion that you "see somebody" just feels like a punch to the stomach. You're one strong lady to survive a jab like that!
Imc, keeping you in my thoughts and prayers!
Hugs all around,
Binney0 -
Thanks Firni-yes I guess it can be a bit "clicky" kinda like high school...:o) but it is, as you say, the best site by far...the information on these boards has been invaluable.
Thanks Binney
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I am hypothyroid with the whole shebang of symptoms. 5 years ago, in trying to find a doc who understood this, I met with 6 in a row who told me my problem was psychiatric, and handed me rx's for antidepressants. I moved on. The 7th doctor told me my issues were probably thyroid based and did the appropriate bloodwork, and most of the symptoms cleared within weeks. Going "psych" is an easy out for those docs who are clueless and uninformed. If this sounds like a rant, it is. My dd had a traumatic brain injury as a child. She developed migraines, seizures, dizziness, and mood instability as a teen. We saw neurologists ,who all insisted the source was psychiatric. Psychiatrists were stumped, told us it was probably neurological, and told us to go back to neurology. We bounced between well-regarded docs for 3 years until we met a doctor with a background in brain injuries who basically said, "Uh, duh. These are TBI symptoms. We see this all the time." We wasted so much time, money, and emotional energy on docs who simply were not informed, who were also uncreative and unhelpful. It's certainly a frustration. I think it runs across all specialties. I've gotten better at hearing a cop-out when it shows up. I look at that doctor and think how sad it must feel to be so clueless and unhelpful.....and I move on.
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IMC... thanks sweety... I do not have many close ups because I am ALWAYS the one taking the pictures...lol.... your comment was very kind.
Brazos..................... way to go lady! I hate that doctors are like this.
Binney/Kira
Can either of you describe cording and web syndrome
myofacial release, scar release... Brazo... WHAT IS THIS????????? This sounds like ME !!!!!!!! I had rads and I regret it. I knew I would. Anyway... I have soooooo much scar tissue... but not in the breast too much. itis in my armpit.. arm..etc.... I will be going back to a LE therapist in the spring... but it would be GREAT to come armed with what I also think I have...
I daily stretch the " cording" arm... it hurts from shoulder to wrist. Feels like I need to " snap or cut" a band restricting my arm... grrrrrrrrrrrrrrrrrrrrrrrrrrrrrr
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Firni I like that nickname alot. I have been a Pre/ Post op Surgical Rn/ PACU Truama nurse for 21 years. So I am lucky that I have "raised" new Drs. as Residents and shown them the way of Surgical Nurse/ Dr/ Patient co -working. ... and what to write for orders so we don't wake you at 3am. ITS ALL ABOUT ADVOCATING AND TEACHING. So Drs. usually cringe when they have to deal with Nurses, as they know whats comming. I can not fathom going thru all this w/o what I know and I still don't know enough.
Beesie and Kira....kudos to you ladies. For giving me the Armor to do proper battle and carry the tourch for this INCREDIBLE BLACK HOLE OF IGNORANCE. I may just have found my voice.
I am upset about how that visit went, and that he found a 7mm nodule on my chest... and I am sitting with what to do with it. And I thank you and the ladies on the DSIC forums for theyre input and support.
Estepp....what you describe sounds like cording aka damaged lymphatic vessels that become hardened, firm.... and similar to what I am going thru.Mine started as a thick wire in my arm pit, that wound around my bicep,,, down my forarm....I could not strectch my arm out w/o pain. I also have the cord running into my pectoralis muscle area down into my chest headed towards my BMX incisions... Getting rid of the cords with myofasial release ( which is something LE/PT does, they work on stretching and massaging the bands till they release.....almost snapping them, releasing the the tension, improving range of motion, providing pain relief... and I do believe it helped the swelling go down..... I sure hope you won't have to live with this till spring.
Hi to everyone I don't know, nothing but good thoughts for you!
Blessings and Nite to all
Brassy aka Brazos
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Hey Brassy, thank you! I like the new name... that our girl here gave you ! It fits! Keep it!
Hey... so when they release the scar tissue and/or the band/cording.... does this rid it for life? Man am I ready to MOVE ON... it has been 2 1/2 yrs past DX and I/we still are active in our BC trials... due to the gift we all got.......LE.....scar tissue........... etc.
So.... can a PT RID THIS FOREVER IN US???????????
" mental note in my head.." ---------------------> please say YES... please say YES..... please say YES !!!!!!!!!!!!!!!!!!!!!!!!!
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HEy Estepp... as far as getting rid of the cording, I am told that it should not return by my LE/PT.... I take that as not 100% sure...but good enuff. They did a great job of getting it gone in my upper arm and forearm. It felt like a VINE was growing from my armpit. But I still have it running towards my pecs and incisions....and I stretch and strech all which ways.... and I massage the cords in my BMX scars....
No wonder we have to eat brownies under the bed! Can someone bring some cold milk, whoever gets up next?
Nite all
Brassy
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I'll bring eggnog!!!
Laura, your new pic is fantastic. And lmc, I so agree with you...I adore this forum...I just about post here exclusively for some reason...
Brazos, hang in there. I am cooking up a fresh batch of brownies as we speak!!!!
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Good Morning all you Swell ladies. I just found this thread and I thank you for starting it. I had a bmx in July. I began going through these and other boards as soon as I was dx. I am so thankful that if I had to experience breast cancer, that it happened now when there are such wonderful outliets. BCO is one of them.
Because of the threads I was already aware of LE and was able to DX it myself. I am constantly bringing my onc copies of the different info I get here to expand his knowledge. When I am asksed about my wrapped hand, I am a one women show. I smile and say I have breast cancer and this is one of the side effects of the surgery I have. Its up to us to make this known. When I first realized that I was going to loose my breasts, I really thought, oh ok, when I wake up at least I will haver perky new breasts. lol. I had no idea what it would entail. I decided no surgery. Bought foobs but no longer where them. I started chemo in September and will finish in February and on to radiation. I had 23 nodes taken, 20 involved in my left arm. I am a stage 111c due to the 9.2 mass of lobular they removed. My right breast only had 2 removed none involved. Until you are experiencing bc you just dont have a clue. And so many people dont speak of it.
Because of this forum, when my arm began to accumalate, I was able to almost immediately get help. I am in week 2 of the wrapping part. and it seems to be doing the trick. just praying it gets down enough to order my compression sleeve before the new year. As it would be way cheaper.
Anyway, its very hard to type one handed. Just wanted to say thanks for starting this thread. Let's get the word out. May your side effects today be minimal. Onward
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I am making some pumpkin streusel muffins today. They are good with eggnog.
I can't remember what LE thread someone said that they were mad since they couldn't find a coat to cover their wrappings but I am going to discuss it here since it fits with hating LE. About 10 yrs ago I made a reversible polar fleece swing coat that has full cut arms and large armhole openings. The pattern is now out of print but here is one similar to it. If you can sew, or know someone who sews, it wouldn't be that hard to make a 'swing' coat or wrap out of polar fleece.
www.mccallpattern.mccall.com/m9576-products-7188.php?page_id=911
(I can't get the link to work, you will have to copy/paste it to find the page.)
There are several patterns with the large arms by many of the pattern companies and if you have a hancock fabrics close, they offer patterns for under $2 and now the fleece is on sale.
Sheila
edit to add, welcome Onward. I was trying to find some patterns to post about coats and missed your post.
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Suzanne, has your flair settled down? I'm seriously considering getting a Tribute night sleeve (as opposed to ReidSleeve) so I'm also wondering if you are still happy with yours.
Has anyone heard from Kane? I often wonder how she is doing.
Gentle hugs everyone.
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Onward: sorry you joined the club, but so glad you got early treatment. So many of us have had to diagnose our own lymphedema. Let us know what we can do to help.
Laura: here's the link to our axillary web site--I wrote it, as the queen of cording.
http://www.stepup-speakout.org/Cording_and_Axillary_Web_Syndrome.htm
I got to meet Jodi Winicour--who is funny and caring--great combo--at the NLN, and she checked out my webs. At her lecture, she had the whole audience doing the stretching--arms up with elbows straight, and then arms behind head, with elbows back--lean to each side, and then twist.
Kira
Sharon--FYI--got a jovipak brochure, and it says that jovipaks are meant to be liners--only to be worn with bandages or the jovi jacket--news to me--maybe that's why my Solaris works better--it's designed to be enough compression without an over jacket.
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Thanks Kira.
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Hello all my swell friends. I learned that I can't use my scrapbook punches yesterday. I punched 4 snowflakes, four small snowflakes, and four flowers for my DD. My arm throbbed all night long and yep my arm feels huge today. I even broke down and I am wearing my sleeve. Honestly don't think it is doing much good as tight as it is and it stays rolled down half way. I can't wait till next Friday when I get to go back to the LE Clinic. I so hope they can get this back under control. My chest even hurts today.
Hope you all have a great weekend.
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KittyDog, if your sleeve feels too tight and is rolling down take it off. At this point it could do more harm than good. If you are able, keep your arm elevated as much as possible, drink lots of H2O, and massage if you know how. Better yet, wrap it if you know how.
Good luck. And be gentle with your arm for now.
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I think I look like a smiley mouse in the photo.... but some of you BCO girls wrote to me... over the past few months... saying they wanted to see my FACE in my profile...lol... and another sister said she wanted to see my smiley face... SOOOOOOO Darling son took many pics of me... joking around... and this one is my face and smile close up.. so there you have it... I am the smiling mouse of BCO.
THANK you Kira.... I am going to read all about it today at work as I get breaks.. I am sorry you have all this too... grrrrrrrrrrrrrrr
I am very pleased you all seem to like this thread and feel good posting here..... It makes me happy I had a really pissed of LE night and posted my.. GRRRRRRRRRRRRRRRRRRRR.... outloud!
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I have pain with my LE. It feels like "tissue pain". My physical therapist said this is common. I am wearing a garmet to shrink the arm by 1cm and then will be fitted for a sleeve. Mine is not soo bad at the moment but it is a constant reminder that my life has changed. I will be ok though, at this point I am still in the glad to be alive stage. I suppose five years from now if all goes well, I will then be irritated with this arm! It is a pain, wish they had just taken out the nodes until they found a negative one, then I would have some left, instead of taking them all out after finding the first two positive nodes.
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Sharon you will be happy to know I couldn't stand it and took it off. I am not good a wrapping yet but I think my DH will have to wrap it tomorrow. I did do a measurement and it is swollen about an inch more than before. Mainly at the very top of the arm. Drinking water the past few days. Not easy giving up my Mt. Dew. I had three hidden and gave in yesterday and share one with my DD. I am hooked on it like some people are to coffee. ugg but trying very hard to stick to water today.
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Kitty, I'm sorry you are having trouble. Hopefully you and DH will get a good wrap tomorrow. Good for you for listening to your body and taking the compression sleeve off. Usually if it doesn't feel good.......it isn't good. Get that arm elevated for a while if you can.
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I think I'm experiencing truncal lymphedema.. I had my bilateral mastectomy September 10th. no complications, no issues. I had sentinel nodes removed from both sides. I'm having TC chemo intravenously on the left side.
I am 14 days post treatment #3 and 3 months post surgery and I think I have truncal lymphedema. Is that possible? My skin hurts and feels tight almost like there's an extra layer on it. When I look in the mirror, I can see "rolls" on my lower back just below the rib cage. I feel like under my armpits, chest, sides, breasts there's extra fluid or skin - not sure. It just feels weird and different and hurts to touch or lie down on my back.
Seeing the oncologist on tuesday only. Did anyone experience this? Is there anything I should do to remove this?
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Rachel--I answered your post on the truncal thread--just worried it's a complication of chemo or an infection, but if it's not, then an evaluation by a good lymphedema therapist should help.
Kathleen--Sorry you're joining this group, but it sounds like you are taking it on with a great fighting spirit. There is a lymphedema clinic at Magee Hospital--there is a researcher there, Atilla Soran who is working with the laser and bioimpedance--I'm not a big fan of the laser--except for fibrosis, but at least they acknowledge lymphedema. I do understand why you'd wish they'd left the normal nodes alone.
My husband grew up in Squirrel Hill, and when we were back in Sept, it seems like UPMC owns the whole town...
Some of us here started a web site about lymphedema, and here are some coping skills for while you're wrapped--and know it does get easier and better
Kira
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went to the dr yeaterday, another bladder infection from the anitbiotic for the cellulitis. as i was explaining to her how i went off the lupron and decided agianst the arimidex becasue i felt the lymphedema sideeffect was too risky, how angry i was that i felt the chemo dr was not taking good care of me, how i also just stopped the antibiotic after being on one antibiotic or another since may, and getting sick of teh side effects, i felt like she must think i am a nut! dxing myself and stopping pills and cancelling dr appt after dr appt...we came up with a treatment plan, prioitized issues. first up, i am getting rid of this bladder infection, then trying the metformin agian (i need to get my sugar in check before i have my reconstruction, plus metformin will help my body heal and hopefully keep teh cellulits at bay), then off to teh gyno and surgeon in Jan. I intend to see a reconstruction dr in Feb (if the cellulitis stays at bay) to schedule recon surgery in March (not sure yet which type of recon and not sure if i am able to do it after the rads, but one day at a time---and one thread ata time too ; ) of course she offered me an antidepressant, but i said i have my xanax for my occassional weeps. I HATE drs! all in all, I am relatively happy, and what i consider to be as healthy as possible considering where i am at post mascetomy wise. it could be worse. thanks for letting me vent, you ladies are awesome. hugs terri in michigan
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Laura, others, on the cording issue, mine was bad and with tx, it has been GONE for two years! Since you don't have insurance, I wonder if you could go in for one session and have a PT show your dh how to do it at home--it is not complicated, but you can't do for yourself because you need two hands on your arm. The stretching my PT did is go along the cord (which she and I could feel from the outside from especially in bicep area) and inch by inch, use her thumbs to stretch the cord. A few sessions of this got rid of it. I asked her about it Friday when I was in for ROM issues and she says that cording it is a very treatable condition which usually disappears permanently. Very encouraging--just wanted to share. deekaay0
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Terri, I can so relate to your post - what is it with doctors???!?!?! I had to go to the doctor for a cough that I have had for months and for problems with my breathing. First, he asked (after looking at my recent medical history) if I was having anxiety. I said, "Seriously? Are you asking me that?" I laughed and told him of course I had been having issues with anxiety...I got both boobs cut off after getting a cancer diagnosis and then developed LE, all while working a crazy, stressful job. H@ll freaking yes, I have anxiety. Moron. Then he did some breathing/blood tests and discovered that yes, I actually do have some serious issues so he said that I have asthma. Needless to say, I'm going back to the onco. and have an appt. with a pulmonologist after the 1st of the year. I am really hoping for asthma. How sucky is that last sentence?
Geez, Louise.On a brighter note, the old swelled up arm is actually doing pretty darn good!
You know, I forget how much I love him...
Is he not the cutest thing you ever saw????I'm going to have to start hanging out in the argumentative threads so that I can use him more often.0
