Kicking LEs butt!! Exercise & Self Care Log
Comments
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Did MLD last night, Lebed this morning and heading to gym.
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Thanks Purple for the motivation, too funny. Did MLD and lebeds opening and now walkies. Humm, just givin it here!
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DVD, and also may be setting up programs around the country. He did say that they did not think it was going to work out doing anything with the y
Yes, when I spoke to them , I told them about my plans to make a DVD and they said they just might make one. I spoke to the good dr. herself.
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Dont mention it, hugz!
How goes it with the MLD btw ?Additionally, someone from PAL for life told me they were no longer willing to work with the YMCA because of non-compliance. I was quite discouraged by that .
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Yes Purple, I did not bring up the DVD, I was shocked when he told me about it. I was actually thinking he's reading this thread and taking your ideas. He told me if they do make a DVD, he will be the person leading it. It sees a little strange to me that it wouldn't be a woman.
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I have been able to talk with a few folks at Penn, and I know that they have been puzzling for some time over the challenge of getting the PAL program out to women around the country. I had not heard of a DVD solution, but I'm not surprised if that's where their discussion took them. It's probably the least expensive solution, both for production and for women who want to have access to safe weight lifting given their LE risks. There are always tradeoffs, however, and with this idea, I worry about weightlifting without anyone to watch form and coach the client. Even if you are in front of a mirror, you cannot really see if your form is correct.
4.9 miles today for me, most of that outdoors on a nice walk in frigid but very sunny weather. I owe myself Lebed in the next hour or so.
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I was actually thinking he's reading this thread and taking your ideas
To be perfectly frank with you, I thought the same thing!
edited to add: I was a little dismayed when a lead trainer told me that PAL would ' give up' on the YMCA. We, as LE pts cannot afford such luxuries. My distinct impression was that there was a battle of sorts and we were in the middle.
I was directed to this website by the DR:http://www.strengthandcourage.net/lymphedema_exercise/lymphedema_exercise.aspx
I have to take issue with some of the risk factors listed on that website. I am not obese, didnt have radiation etc ... I would prefer to have seen pts warned that you do NOT have to be obese or have rads to get LE. Then again, I actually HAVE LE so I do think the motives differ.
I also found this to be quite misleading ( e.g. One study demonstrated a risk reduction of over 33%! "
When in reality, the trials concluded :
"ConclusionIn breast cancer survivors at risk for lymphedema, a program of slowly
progressive weight lifting compared with no exercise did not result in increased incidence
of lymphedema.
Trial Registration clinicaltrials.gov Identifier: NCT00194363 "
Let's just say I am very disappointed!
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I did actually specifically question him about the Y. He told they tried it, thought it would work because of the Live Strong program that they have at the Y, but that it just didn't seem to work because of the turnover. He said they couldn't trust the knowledge and skills to be passed on to new trainers as they were hired at the Y and didn't want to give an impression that they knew what they were doing when in fact they didn't. It seemed like he was very dismayed that it didn't work out. It also seemed like they have completely given up on doing anything with the Y and are moving on to search for other ideas.
He was also dismayed that the program wasn't being put on in the hospital you spoke about Carol. He said at first they were not sure if they would get reimbursed by insurance for the exercise training either. But if you code the invoices as rehabilitation related to breast cancer, the insurance companies that they are dealing with here are reimbursing for it. It was a really good discussion I had with him.
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It seemed like he was very dismayed that it didn't work out. It also seemed like they have completely given up on doing anything with the Y...
The trainer I spoke to said they were upset that LIVESTRONG did not really comply and they were giving up on them. I thought this was really and truly a shame because it wouild seem to me that if you cared, and you knew BC pts were going there for free, you would STEP UP your approach rather than GIVE UP! I was troubled enough by that to call my local Y and ask if they would meet with me regarding precautuions to take for BC pts who may not know of their LE risk. They have been very willing and eager.
Unfortunately, due to the cold weather , we were unable to meet this week as planned , but they have kept in touch by email.
They seem as though they are willing to step up their free program.
Many thanks for your update Kay!0 -
Frustrations abound here, that's for sure. It wears us all down when we perceive that we're being given lip service on help for fellow LE patients and those at risk. Purple, keep on holding false claims to a higher standard! It's certainly true that misinterpretations of study conclusions are passed around, fast and loose.
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Thanks, Carol ... needless to say - will do!
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Purple - I've come to the conlusion that LE is a crap shoot, just like BC, we may have all, some, or none of the risk factors and still get it. I think the only thing we can do is the best we can, so that should things get worse, or BC recur and least we (meaning me) won't blame ourselves. Who would have thought the punch biopsy by my sternum would have triggered a big LE reaction in my arm, hand and fingers, but carpal tunnel surgery on the same hand did nothing
. It's frustrating that we need to discover most things on our own. Sometimes the more I read the more confused I get about it all. I think I said this somewhere - but the first (fake) LE-T that I went to told me there was nothing I could do, just come back if my arm ever got big, then she cried (literally) for me, telling me how horrible it was that I had BC, that if it were her she would never get out of bed, she would probably just curl up and die. Good thing I wasn't in a bad place right then -
Oh - and Josh from LympheDivas is lurking on this this tread because I just got a PM from him.
Not sure that I appreciate that.Ok - enough ranting for today - if I start again, someone please stop me. I need to get something accomplished!
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Linda, Josh is reading our posts because he is gathering info on a cami or tee design we wish to have made. So far no company has come forward but he is willing. Yes I can see some may not be in favor of him reading. He is not allowed to post. So far he has been such a help to us.
That is such a surpise to hear that you got LE from punch biopsy and not carpal surgery.
You are right, it is a crapshoot
. Your old fake LEist needs to take down her shingle and find work in a labrotory where she doesn't talk to public all day. There is plenty a person can do to keep LE from advancing. Many can attest to this.I tried Yamuna body rolling today and I like it.
You have to be careful you don't put too much pressure on your arms when you move the ball. I think I could get into this. Stretches all nasty radiation scars. Felt good on my back too. Just watch your LE if anyone trys it and wear your garments.Did MLD and Lebed Opening.
Come on girls, Lets rock our socks off. Come on we can do it
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Hi Linda,
Rant away!
I know Josh follows the threads and tried to be helpful. I am quite sure if you reply and tell him you would rather not do the PM exchange, he will honor that.In any case, you said :
"I've come to the conlusion that LE is a crap shoot,"
I guess I would agree, up to a point. But, if that were entirely true all women who had BC tx could get countless BP checks, glucose checks, immunizations, massages, rake and vaccuum etc .. and have the same risk as the next person who did none of that.
I dont believe that is the case, which is why I don't mnind sounding the bell for ppl who are fortunate enough NOT to have LE to at least be forewarned. Once they have the info, they can do with it what they will. I will personally always regret not getting a stinking littlle tri-fold after my surgery because I will never know if I would be wearing this glove and sleeve ( which Juzo accuses me of doing for fashion ?) if I had known ...Thats my story, and I'm sticking to it !
~Peace
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Purple, I hear you on the crapshoot stuff. I just hate this LE stuff so much. Yes I try and warn people to but sometimes I am not in the mood.
What is a little tri fold after your surgery? Me dumb! Is it a triffle folded dessert or a 3 folded napkin?
Seriously I have no clue what it is?
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hahahhahahah!
OK hugz, I guess I need to be more specific sometimes.A tri-fold, a little pamphlet, and insert, yaknow ?!
I went to MassGeneral and no warnings ...nada, no , not one. A little pamphlet ( tri-fold ?) would have been nice !HUGZ
The YBR ball looks waaay cool. Pls be careful , but do let us know how you do with it. I just spoke to a gal a few days ago who has primary LE in her legs and she has been working for months with a trainer with a big exercise ball and lost 3 lbs of fluid !0 -
Purple, Boy am I stupid today. Yes... tri fold makes sense. You probably are one of those people that have to read every free phamplet you come across.
Collecting hey! I did get a tri fold but it really should have had a wake up call in bold letters saying. BE VIGIALANT ABOUT LE SYMPTOMS. After 6 hours of surgery who knows where that tri fold got off to! I was so out of it! I do think I was warned of a big arm possibly and that was it. They did give me ROM phamplet of exercises to do and I was a good little girl and did them. Thank goodness I didn't go for the big huge stretch above my shoulder though. Isn't that bad for our arms coming out of surgery? I only could reach up to my ear the first 2 weeks.
Yes I will have to watch LE with ball rolling. I can't figure out yet if it would be good or bad for trunkal and arm. It would be good rolling the fluid down to hip but then you roll back up. It would be bad overstrectching the trunkal skin with the semi hard type ball. You are also suppose to balance with you hands to stabilize your body on the ball. I tried not to put too much weight on LE arm and it worked out. I tell you I stretched my hamstrings out really well, butt too. relaxing too. Ill see how it goes.
I want to lose 3 lbs of fluid from anywhere on my body. Well 3 lbs of fat and fluid would be better. I am glad for the girl that has lost. She would feel better.
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You are hysterical, hugz.
I love your posts!
Well, my surgery was short ( LX) and I was talking the girls ear off in recovery when I realized she was still alseep ( ooops) I had no instructions for stretching or post exercises. I DID stretch because I had a prev. injured R cuff and was planning on ( but cancelled) radiation. I think I did several things 'wrong' that a generic pamphlet any of us could write now, would have listed. I'll never know if they contributed or not.
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Hugz, purple, come on you two, don't you know we can't scare the patients??? That's what my place told me, don't alarm the patients, keep them in the dark about LE until they get it
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I was given the LE warnings after surgery, and I was exaggerating a little about the crap shoot, because I do believe there are some definite things we can do to reduce our risk of having or increasing the issues, but sometimes I wonder..... It seems like, at times when I'm being really careful I have swelling, then I can overdo or cut myself, and nothing. Though usually overdoing, especially without compression, causes problems. But I hate pacing myself - I figured it out one day and if I did everything I was supposed to for my LE it could take me half the day.... what a pain.
I wondered what you meant by tri-fold too Purple (chemo brain I guess) And thanks for putting a little balance to my rant.
Maybe we should start a specific forum for Josh to find out what we would like, our issues, needs, ....... I felt a little uncomfortable about the PM, but I'm probably just over sensitive today..
My LE did not raise it's nasty little head until I finished radiation - and my RO has women come back in 6-8 weeks after their last radiation to check for LE, she didn't even feel mine was worth mentioning - I guess she was looking for the elephant arm, and not even sure she knew about truncal - oops started ranting again. I think I better hit the sack.
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Maybe we should start a specific forum for Josh to find out what we would like, our issues, needs, ....... I felt a little uncomfortable about the PM, but I'm probably just over sensitive today..
Great idea, Linda. But honestly, if Josh is reading the posts, I am certain he wont PM you again once he sees how you feel.
nibbana
I know your comments were tongue in cheek , but hoinestly,. I have mentioned (warned) LE to so many pts on this BC forum, and sometimes before I hit the submit button , I do feel bad that maybe I'm scaring them.
Still, I do wish someone had 'scared' me. I recall being told : " No BP or needles in that arm now" That was the extent of it and nobody said why either. I followed that advice of course.
However, I had a few chair massages ( included arms) post LX. I had manicures, I did some zumba with repetetive arm movements a few times , I continued my salt loading which I had been doing for many yrs for my low BP ( Dr ordered) . I did lift a heavy coffee pot at work twice a day, but I dont know if that would really be enough ... I just think with my impaired circulation all of the above sent me into overload.
If I had a little warning pamphlet ( tri-fold if you will
I would have had my assistant lift that pot, I would have polished my own nails, I would not have done those zumba arm moves, I would have skipped that massage for sure and I would have cut waaaay back on the salt.Woulda' , shoulda', coulda'... hard to live with .
THAT'S why I want to warn other BC pts. If it scares them, I do feel bad, but I'd feel worse knowing they might be increasing their risk of LE, and I sat back and said nothing at all. Couldnt live with that.
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Purple - interesting issue about scaring v. warning newbies. I too try to warn newbies, but I try not to scare them - I worry that they'll be so scared and worried that they won't exercise at all. Like you, a little tri-fold would have been so useful - I also unwittingly engaged in very risky LE behavior just because I didn't know any better. As was the case with so many of us, the first time I ever heard of LE was after I already had it. I was googling my symptoms and that's when I first heard of LE. What a blessing SUSO is - thanks to everyone who worked on it as there was nothing like that 5 years ago! I would have been so much better armed (pun) had SUSO been there to explain it all to me - I had to piece the info together myself in the face of my surgeon's denial. At least now a patient who suspects LE can print off SUSO materials and take them in to follow up visits - it puts us in a much stronger position to advocate for ourselves.
I tend to "adopt" my anniversary month groups - since my bmx was January 2008, I tend to pop into the current year's January surgery thread to give a bit of encouragement - they're all so scared and are very grateful to the "oldbies" like me who have been through it already and have come out OK on the other side. There was some hope with this year's group - more than a few actually were sent for LE consults by their surgeons - after surgery, but still better than nothing. But others were given the finger-walk-the-walls stretching exercises to do right after surgery - grrrrr. My chemo started in March 2008, so I'll pop into this year's March group to give them some encouragement as well, and maybe do a bit of LE education as well.
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*What a blessing SUSO is - thanks to everyone who worked on it as there was nothing like that 5 years ago! I would have been so much better armed (pun) had SUSO been there to explain it all to me - I had to piece the info together myself in the face of my surgeon's denial. At least now a patient who suspects LE can print off SUSO materials and take them in to follow up visits - it puts us in a much stronger position to advocate for ourselves.*
natsfan
Did I write that ?! I sure could have ! Thanks to SUSO from me as well. I wish every single BS would mae a TRIFOLD
out of their warnings and hand it out after surgery! We usually find suso AFTER the fact.Natsfan
The anniversary dates are a great idea.
I do my best with ppl in not scaring them, and I always try to add they most likely wont get it , it's just to be safe etc etc ... we do our best.
thx for your post. It's a good reminder for all of how much we owe SUSO. Thanks to all!
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I believe people need to be told of their risks of LE. I don't think any good can come out keeping people in the dark until they show symptoms. I mean, this is cancer, it's no walk in the park and all phases of treatment come with side effects.
I registered for this site after I my mamogram came back BIRAD 5, that was enough to freak me out. I had the chance to look around this forum and know what the heck could happen during the various stages of treatment. For me, I like being an informed patient. When I'm informed, I can work with my medical team to make better choices. If I was just kept in the dark, "don't alarm the patient", I would have been in a rage.
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believe people need to be told of their risks of LE.
I couldnt agree more.
I learned of this site after my DX, as many , if not most ppl do.
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For 'self care' :
Have any of you ever heard of wet cupping for LE ?
http://www.cuppingtherapy.org/pages/about.html0 -
Purple, this has come up before. You might try searching 'cupping' in the LE forum to see what's been said before. I recall that some of our experts were not in favor, but I cannot recall exactly why.
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thx carol
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I must say I was completely aware of LE risks before surgery. I had cording before that and went to an LE therapist. I was pretty scared of developing it. I had a PT come to the house a few times after sx and helped me get my arms moving again. And I got LE even so before even starting radiation. I think it was Binney who explained some people probably have lymph systems that can take over for the damaged or missing lymph nodes and others don't. That's not to say I don't believe some women can stay LE free by taking precautions and get it if they don't. But for me, I think it was inevitable. I don't think there is anything I could have done to prevent it other than not getting the surgery, but there wasn't much choice about that.
We had a little snow yesterday, about an inch and a half of really fluffy, light stuff. I shoveled the entire driveway today. I like being out in the cold shoveling the snow when its's light and fluffy. We'll see if I regret it or not. It's the first time I've done it since getting LE. I do want to push the envelope and see what I can safely do. I've been doing 20 lbs on the machines in the circuit, so hopefully that prepared me. I am doing the exercises so I can do normal activities after all. Fingers crossed.0 -
I shoveled the entire driveway today.
wow !
My fingers are crossed for you, Kay!
Hope it goes well.0 -
I haven't reported exercise for a day or so. Been busy taking care of grandkids, and helping with preparations for a 2nd birthday party! I have however managed to get decent exercise in, using Leslie Sansone DVDs to get the cardio behind me early in the day, and then lifting my weights today during kiddie naptime.
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