GRRRRRRRRR I HATE LE..........
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ducky, we had a famous incident where my daughter's peas were tossed outside during a snowstorm (while she stayed put after dinner to finish them and no one was monitoring the pea-eating). The snow melted a few days later and I discovered a little pile of peas on the deck. She was so busted! Soon after, I saw the futility of pea-pushing and we called it a truce. Now she has kids. What goes around, comes around, and she and her DH are working hard to make sure their little one eats a balanced diet. My lips were zipped on their methods, when I stayed with them recently! (But Little Miss loves peas...one battle that won't have to happen!)
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Carol...my one grandson eats no vegetables, and no fruits. Zilch, nada, and of course I am frantic about it. He was 11lbs 12 ounces at birth, 23 inches long. They had to go to the pediatric floor to get his shirts and diapers, newborn would not go on his body. He ate like a champ till he was close to 2. He began to gag on the texture of food he had always eaten with no problem, and refused to eat anything but carbs.I took care of him while my daughter worked. Still do, he and his sister after school. They do not force him, like all the kids today, he is growing, but I worry about his nutrition. He drinks a gallon of milk in 2days. Hopefully that helps. Maybe one day......lol
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Oh my I have the pickiest child in the world. Currently she is on a Spaghetti O diet....Breakfast, lunch and dinner. They make me sick to smell them now. Before that it was corn dogs only.
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Update on my hand: I did MLD and drank lots yesterday. Got up this morning and hand looked better. I then wore sleeves and gloves. Tonight it is doing ok.
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Yay GMA! Good news indeed.
Binney, thanks for the tip on the inner peas! Trader joes is a little less than a mile; ican walk and get some inner peas! Win, win!0 -
Kay, now I am seriously jealous. You have a TJs nearby. And you can WALK to it!
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Thanks for the update GMA.
Yay !!!!!0 -
Still have not found an LE therapist even with all of your suggestions (which I have tried all of them) Did not go to the pt here in town where I live, that would have been a big mistake (my sister also said that) no LE therapist there. So I have stopped trying, am getting nowhere. Will just adjust to what has happened to me (my arm) All of your suggestions and post have meant a lot to me and have been really appreciated.
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123.....I feel your pain. Poor treatment is worse then no treatment. See if you can watch some oh the info on the Lymphedema threads. If you could learn to wrap, that would be a huge help......I am a great wrapper. Sleeve is great, if you can find a good measurer and fitter. I had a good one.....she just could not get it right, so I gave up......I use the over the counter, but need custom because of the larger upper arm. You know..." bat wings". Good luck.
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Will just adjust to what has happened to me (my arm)
penelope
That is really not a good idea as this can progress. You need to pursue this further. Pls continue to make calls. Many of us have been in your boat and it does sometimes seem like the Titanic, but dont give up the ship.
I have a FAB LEist. It is true that she is outside of my INS. but thank goodness- affordable.
PLS keep trying ...perhaps if you give us your city and state someone can help more (?)
Good Luck.
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Purple,
How much does your PT-CLT charge for half hour or one hour?
Thanks!0 -
Well gang, I met my new therapist today. She has about a year experience, but there are three therapists there, (one is LANA certified) and they all went to different LE schools, so they share information. This one is Klose trained.
I gave her my exercise routine, she did measurements and asked me how I do MLD. So I showed her exactly what I did and she was blown away by how thorough it was! So, I was taught MLD well by my ex-LET. I did ask her about a personal trainer familiar with PAL protocals, she asked around and no one heard of PAL! Why is that, it is an east coast thing?
Anyway, I did manage to get in the slow, progressive part of exercise, no body weight exercises, and NO RESISTANCE BANDS! I trained her well, hehehe. =P
The only thing she didn't do was MLD on me, and I hate to be a stickler on that but as I was browsing through the forums throughout the months I picked up these two points.
The reasons for a therapist doing MLD on a patient is...
1. So the patient and the therapist don't forget!
2. The therapists is also feeling for change in tissue. I mean I could be sitting here saying, "look at my ripped biceps", when that " rock hardness" is my arm going fibrotic!
Am I right here? If so, I'll bring this up at my next six month check-up.
Over all, a good experience, and I look forward to working with her. Plus, I got my new garments and once again, my fitter is dead on accurate!
So new garments, new therapist, guess I have nothing to grrrrr about today!
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Nibbana - Sometimes at the eval with a new therapist they don't do the MLD, kind of depends on the the amount of time that was scheduled for you and what they told her the appointment was for, like getting measured for new garments. I'm pretty verbal with my medical people, so if I have any concerns I ask, i.e. should I have MLD, what do you think of XXXX, .... I've learned to shout it to the roof to be heard, though I do try to do it in a manner that I don't annoy them too much
, but they are my employee for that time period! Also, sometimes at my LE-T appt's we end up going over so much stuff that we start to run short of time (they have her on a tight schedule now), and then I reschedule for MLD, or she asks me if I'd like her to do a short one, sometimes instead she does kinesio tape, to wrap or not - it is driven by time and need though, and if we need to get more, she gets me on the schedule to see her within a few days if possible. All that said - it actually sounds like you scored with your new LE-T. Does PNW stand for Pacific NorthWest? or somewhere else?
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Linda, yes, I'm in the greater Seattle area. We have cutting edge cancer research and treatment here, but no one has heard of PAL. Well, the LET is going to email a PT buddy and ask her if she heard of it.
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nibbana
BE a stickler!
MLD is the PRIMARY reason I go to the LE'ist!PinkHeart,
I hate to tell you, but my LEist only charges me $50 and I am usually there for 2 hrs !
I have been giving her gifts and the last time I went, I doubled her check because ... well, it just didnt seem fair !
She is highly qualified and well known- a LEist instructor for Vodder w/ 18 yrs experience ... and a wonderful person!0 -
Nibbana, it's wonderful that you were able to educate on PAL, but really...how disheartening that a lymphedema therapy practice in a major metro area had not even heard of it. True, the research trial took place 'out east'--in Philadelphia. But it was completed in 2009, for cryin' out loud. The trial and several follow-up study extracts have been well reported, and in the past year or so, the NLN published a huge feature story bringing in all the recent exercise studies, in one of the NLN journals. So to me, it's pretty clear that these LE therapists, despite knowing their LE skills (which is wonderful), are not holding themselves accountable for continuing education. Because if they were looking at NLN information, or Journal of Lymphoedema, or even just googling to learn what's new in LE, they would have found this information.
In Philly these days, Univ. of Pennsylvania (where the PAL researchers are) is running PAL exercise groups in several locations in the area, and these are group exercise programs being led by LE therapists, all PTs I believe. And...they are getting reimbursed by insurance for these classes, which I find amazing. So not only could a motivated LE therapy group learn about exercise precautions and specifically those applying to weight training, they could be putting on classes for LE patients to get them safely started on a program with LE therapist supervision.
If you can convince these people that they need to get up to speed, for the sake of patients who need their therapy resources to be up to date, I can give you some UPenn contact information they can use. They can also look at cancersurvivorfitness.com to find a wonderful woman who can bring them a workshop; she was lead personal trainer during the PAL trial.
Yeesh. Nibbana, you've done a great service to wake these folks up, but I really am scratching my head over why PAL is news to them.
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My LE T had heard of it, but only knew a little about it, that's pretty good for living as remotely as we do, but LE is a real cause for her, she had to fight tooth and nail, probably with some hair pulling thrown in to get the doctors and hospital to accept LE therapy, she's amazing. Glad that Nibbana got it know in the Seattle area, I really would of thought they had at least heard of it.
Purple - is your LE T an OT or a massage therapist. I think the massage therapists might be a little cheaper, but I've wondered if they were also more relaxed, not so pushed for time, and had more of a holistic approach, rather than clinical OT. Though my OT is amazing, just wondered if they approached it from a little different angle.
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Purple - is your LE T....
Linda
Fully certified physical therapist.Vodder certified LEist.
I used to get massages now and then before LE. They were $65-$95 ( The 95 were hot stone) They were 45- 1 hour.
This girl is worth her weight in gold. My co-pay would be 20/ she charges 50.
Btw, I have a msg for you on Gloves and sleeves thread.
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I had a 1 mm stage cancer lumpectomy in 1995 caused by a blow to my breast, 16 years earlier. The surgeon removed all my lymph nodes, which were all negative. This was before they started testing lymph nodes. I had some swelling in the summer months, bought a size 1 or 2 sleeve, wore it for the summer, and my arm went down again when the weather cooled, then the sleeve came off. Two years later, I stepped into an elevator which fell 6 floors until the brakes kicked in, and when they did, the incision ripped inside my breast. Shortly after that, my arm swelled to a size 6 sleeve and I started getting Cellulitus infections; twice I was put in the hospital. Grrr...so I know how you feel. For numerous years I didn't get any help. Then I got breast cancer again, after being misdiagnosed and put on high doses of the wrong medication which causes ductal breast cancer. This time I lost my whole breast to a 3.6 cm tumor, stage 2, from being on the wrong medication. All the doctors and lawyers stick together, so there is no chance I can sue anyone. I just have to be glad that I pushed and pushed for testing, practically yelling and screaming to be listened to, and that's when my second cancer was finally diagnosed, and I'm here now writing to you. Otherwise, I would be dead. I don't believe in conventional doctors anymore. Some medicine is life-saving; other medicine takes lives. I live in a small town, 200,000, approximately. I saw some people who say they are lymphedema therapists, but they really don't know what they are doing. Finally, a real bonified L therapist moved to my town from Washington DC; a real expert. He got my arm down two sizes through therapy and wrapping my arm. I wear size 4 sleeves during the day, and use the Juzo soft Varin sleeve which doesn't bother my skin. I wear a large sleeve garment at night when I sleep; the name escapes me; to keep the swelling down. What helps me the most is to go to my community pool and walk through the water using my arms and that has helped me immensely. I also stopped taking Arimidex which was eating away at my bones and joints after 2 years; I changed from conventional doctors to a Naturopath doctor, who can prescribe any medication I want, if I want it, and now I am mostly on various vitamins and supplements that also help keep the swelling down. "Bromoline" is the supplement that is breaking down the hard Lymphedema cells and making my skin pliable again. The Cellulitus infections have stopped and I'm able to sew again, something I haven't been able to do for 13 years. Hope this information helps. I suffered for 13 years with no help. I finally got help and people notice my arm is smaller. You know your body better than anyone. Seek a better L therapist if you can and use a pool. It made the world of difference for me. Remember you are your best advocate. I recently had my port removed and I no longer go to the oncologist. Remember they are paying off their school loans and are in it to make money. That's the hard cold truth. Be pro-active and look out for yourself. Good luck!
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Bromoline!!! gonna check that out!
Thanks Purple!
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Sumana, Chimming in for Bromelain also. Yes I do have scarring from surgery and rads but I can't help mention that my PS was amazed at my healing of breast scars and healing in general. This was due to Bromelain. (and good eating.) I found out about it from searching the net. Some PS prescribe it after surgery's. It helps with hypotrophic scarring. So that could make perfect sense about sumana's pliable arm. Bet you won't find LE studies on it though.
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My adhesions are still getting worse 2 years post radiation, so how much bromelain do you guys take? And is there a cream or something that might work? I started the Tumeric with Bioperine in it a couple of days ago, it's supposed to help with pain and your immune system. You now they use bromelain and papain in meat tenderizer - wonder if that's why it works
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Linda
I'm not sure on the dosage but if someone here dosnt know, do a search on the alternative forum thread and then pls follow up with your own research for dosage . I eat lots of pineapple. Also I eat apples because quercetin is supposed to be good as well.
I had a difficult time following sumana's story. sorry
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Sorry to say but I agree purple. Be leery of some post from someone who just joined and has that much to say. Do some research on your own. I am going to ask my PS about it. I could use some help with scars too.
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Here is just one link :
http://www.livestrong.com/article/199557-herbs-for-lymphedema/
PINEAPPLE sure cant hurt though I dont know if it would have enough bromelian. I have looked into horse chestnut ( numerous times before the LE due to CIRC!) but ask your DR as this is for short term use and not without risks. I have low BP and low Blood circulation.Coumarin is bad - period.
I say stick with your pineapples and apples , do research on the ALT. threads and then some more research and THEN... ask your DR! The last thing we want to do is damage the liver ( coumarin)
To me, the safest is GSE from my link posted and also 'good' for ER PR positive but it does lower BP so I look at it in my cabinet- it doesnt work from there :>)0 -
I read Sumana's story.......when I was first diagnosed, I thought it odd that my tumor was exactly at the spot where a few years before, I had taken a hard blow to the breast....here is the story......I
I was running the sweeper, which has a long cord.....while moving forward, I stepped on the cord.........the sweeper stopped suddenly from going forward, but I did not.......the top of the handle was jammed into my right breast, and I saw stars......said a few choice words, and forgot about it........several days later, I was putting on deodorant in front of the mirror after showering, and saw this ungodly, jet black, huge bruise on my boob.....thought.....WOW, that's not good, judging from all the stories circulating about getting hit in the breast causing cancer..........makes you wondering doesn't it..........however, when I told my BS the story he said......NO......that could not be the cause........so I'm not sure who told Sumana that is how she got hers, but I questioned other Drs, and researched it, and all came back.....NO....so who knows......0 -
I can't understand how a 2 year old surgery could rip open on the inside from a sudden stop from anything moving, especially going downward......maybe I am missing something here.
Also what was the name of the drug given in error, and was it for BC, or something else......also.....I worked for a Pharmacy Co for 15 years, trust me, we were always being sued for something, so you can sue anyone, and believe me....legitimate cases win......the FDA loves coming down on "big Pharma"
.......just research all these supplements. Sticking to pineapple, and apples might be the way to go........Face it.......do we need anymore headaches.
I would also question a Dr who tells you he will write any script for meds that you want, If he is not a licensed M.D........he cannot write "any" scripts
I believe in ways of helping yourself,like acupressure, massages, meditation, a good daily vitamin, D vitamins, right amounts of protein..............but I say do nothing without checking with your Dr first.........also I think to paint all drs with the same broad brush is unfair.......to say the hard cold truth is they are all in it for the money is wrong.......many of us are still alive today because of the good Lord, and a skilled physician who took care of us..........not attacking Sumana, but let's put the blame where it belongs........"cancer"0 -
ducky
I dont doubt that !
It's ironic that I have had 3 blows/ severe injuries on my left side and NO hx of BC in my family at all.
I got BC anyway. Guess which side ?
I perosonally wonder if it was from the time I fell and hit my left shoulder/chest so hard that my shoulder broke and most of the R Cuf tore off. Who knows ? I dont find that hard to believe at all.
I was merely saying there were parts I did not understand and when we are communicating this way or by email it is much easier to MIScommunicate.IMO -----Everyone should do their own research. Having said that, I for one, appreciate, news , opinions, stories, tx etc ...that prompt me to research !
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More PAL cluelessness...
I called the Cancer Lifeline here in Seattle and asked the person answering the phone, "Can you recommend a personal trainer trained in PAL-protocals?"
"Huuuuuuhhhh...whaaaaaaat?" (foggy voice)
Me: "Have you heard of the PAL study for exercise with breast cancer survivors?"
"No, I never heard of it." (even more foggy.)
Me: "What a pity. Well, thanks, bye."
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Purple.....I research everything.....when I worked in Pharma for 15 years, I was in Marketing Research. Thus my constant quest for knowledge. My interest in cancer goes back 29 years. My father died from Esophageal cancer, mother from Colon cancer, and my husband from Pancreatic cancer at 57 years old. I am no stranger to the disease.
It is a known fact that cancer can be present in our bodies all the time....how are body fights it off is what keeps it from rearing its ugly head.....when the bad cells multiply faster then the good cells can fight them off......whoops, there it is.......maybe I read too much......I was fortunate to be in one of the large cancer Centers, and had the Chief of BC surgery take care of me, and an Oncologist who the cancer center said they should insure her brain she was so intelligent, and my RO, who stood by me through 38 Rad treatments. My LE gave me the only problem, no one, even the best LANA therapist got fed up with the fitters.
Also people think removing nodes causes LE. Well here are a couple facts..........my LE therapist also had BC. They removed 35 nodes......she never got LE....a friend had BC....she had 25 removed.....no LE.....a recurrence on the other side more surgery, another 25 nodes removed......no LE then either.........I had 8 removed because the sentinel node did not take the dye.......all clean........I got LE.........Crap shoot.....luck of the draw.....someone tell me........one thing they did say.......it is possible that women who get LE after BC, could have had an already compromised Lymph System before cancer, but cancer caused it to show up when it does. You tell me....0
