Kicking LEs butt!! Exercise & Self Care Log
Comments
-
Cindy and Hugz, I'm still looking at my bottle of tamoxifen.. After having trouble with the AIs I am really having trouble opening that lid.
0 -
GMA - for me, none of the SE's have been awful. Yeah I have a few hot flashes, but I was having them before, I don't sleep as well as I did before cancer or during rads, when I could sleep 14 hours and come back for a nap. I have a few joint aches, but nothing I can't deal with. I have some eye problems, the eye doctor says it could be from the drug, the MO disagrees, but again nothing severe... The MO told me the single most important thing I could do to stop cancer in it's tracks, more important than surgery, rads, or chemo was to take the tamoxifen for 5 years. (of course he waited until I'd had surgery and rads to say it
) I guess the bottom line is I'm willing to deal with the level of SE's I have, I'd even put up with much worse, to avoid a recurrence. I realize there are no guarentees, but for me, it buy's a little peace of mind. I certainly understand the "enough" impulse though. I didn't take my mobic today on the off hope that maybe I'm just really not hurting anymore, and I can discontinue 1 pill. I'll probably be limping and cussing myself soon, but so far, so good.Hugz - yes. The exercise helps a lot. I also need to see if I can't get into see my LET for a MLD session. I feel so good when she gets done with me (much better than when I do it)
0 -
Cindy and GMA, regarding Tamoxifen, one of my eye doctors (who is an eye onc also) says that I have a baby cataract due to Tamox, the other eye doc says no, it's not from tamox. I would like to put both of them in the same room and watch just for the fun of it. eeeks.
I know that they would both agree to me having thinner hair due to both drugs. Still I am OK (but not overjoyed) that I did the full course less a month.Tamox started me off on light arthritis, Arimidex finished me off. Thanks to a high dose of good grade of curcumin supplement I am able to get around much better. If I quit the curcumin then I get really creaky getting up off chairs and get pain within two weeks. It has been a blessing in disquise but not cheap. It is made by AOR and called "Curcumin active fast relief " It took me about 2 weeks of loading up before I noticed the difference. I take 3 caps a day but I think I could get away with 2 a day.You can't get the same amount from the spice when cooking it though. It has to be the curcumin supplement and not turmeric either.
Cindyl. I really don't feel much of a difference going for my MLD session. I guess I am not swollen enough.( I don't want to go there either) I go once a month to get the sluggish LE fluid moved out and for my LEist to keep an eye on me. I did go for a 5 day spread when I sunburned my arm and had a flare. It really helped me, also burnt my full hand and she helped me by draining and wrapping it for a week.
I just finished a GLORIOUS WALK on the boardwalk, the tide was up and it was so close to me that I got splashed a couple times.
The sun peaked out of the clouds just as I was doing my Lebed opening on the beach. It was so peaceful hearing the pebbles moving beneath the waves crashing on the beach. People thought I was doing tai chi. Ha I fooled them!
It really got me in a good mood. I also did tai chi breathers before and during my walk. 0 -
I recently read somewhere that a tamoxifen was a risk factor for LE! ( Not thta it shoud matter a hill of beans to any of US, mind you!)
I was shocked to see that though.Has anyone else ever heard that ?
0 -
Purple, Wouldn't that just be the limit. Oh brother, what next. Gotta get off the boards and clean up the house.
0 -
Visiting my LE therapist was one of the bright spots during rads. I always felt better physically and mentally after I saw her. She listened to me rant and rave, and gave me great advice about dealing with things. I hate the fact that insurance says that we done enough therapy... I can afford to pay for the occasional visit, but not too often. I had never heard anything about Tamoxifen and Le.
The fact that I had cateracts is what got my cancer dx'd when it was, so I guess I should be gratefull. I went in for my pre-op check when I was getting the cateracts done, and my pcp realised I was supposed to be rechecked in 6 months and now it's 18 months out, so she insisted that I have my follow up mammogram and the rest is history.
0 -
I dunno' hugz- I did see it someplace. Sure as hey wish I knew where.
I'll hunt for it this weekend.
Went to LE'ist today. Two hours of fab. MLD...aaaaah!0 -
Got my solid steel Chinese exercise balls, are they ever heavy! I'm gonna have screaming strong hands. Come on LE, bring it on! I'll arm wrestle ya! Hehehehe
0 -
OK this is NOT what I was thinking of when I mentioned the TAMOX reference, but I did find the following on the NLN site:
Medications
Tamoxifen (Nolvadex), a non-steroidal anti-estrogen, is both the most studied and widely prescribed anti-cancer drug for breast cancer in the United States11. Although Tamoxifen has been noted to increase the survival rate14, it does have multiple side effects, some serious. The side effect of most concern is the increased risk of endometrial cancer and, for post-menopausal women, the increased risk of osteoporosis and heart disease. Other serious side effects are pulmo-nary emboli (a blood clot in the lung) and phlebitis in the vein, possibly causing lymphedema 11,12,13. People who have a history of blood clots should not take Tamoxifen. Other medications have not yet been studied or documented."
Whatever. It is what it is, I guess- if you can take it. I was just thinking of that first reference that I saw <wherever >that did say it INCR risk of LE...just pondering it for BC pts W/OUT LE.0 -
Purple, years ago I'm pretty sure I read on their web site that Arimidex has risk issues for LE as well. I can't remember for certain though. It might have been a risk for edema. Anyway, any word with edema in it, I do not want.
0 -
I found the thread. http://community.breastcancer.org/forum/64/topic/724776?page=1#post_1127181
0 -
Off to do lebed during my break
Purple. Am so jealous you got 2 hours MLD. Are you covered by ins. or did you have to empty everything including the change in your pocket?!
0 -
Hugz, as usual, you make me laugh!
0 -
Hugz
I have the BEST LE'ist going so you can BET she is NOT covered by INS!
(just google Kathy Fleming on youtube) Having said that, she is VERY kind and rea$onable and I count myself exteremely lucky to have scoped her out and found her, with the help of a few ladies here. I would URGE ppl to try to keep looking and NOT give up. We have agreed to a bi-monthly schedule providing things are stable. With what she is charging me, I could go once or twice a week to one of the other ( i'm sorry, incompetent) LEists that my INS covered and it would hit me $$ more.
These great LE'ists are worth looking into, and I think they have a serious dedication to pt. care and helping so they try to go EZ on the wallet. I am going to tell her about the exercise DVD and see if she has any interest in helping , either as a consult or perhaps in an interview type segment.
I appreciate Binney's reminder regarding disclaimers, which I have never seen an exercise DVD without, and I purused the SUSO site and noticed a great deal of them. Irregardless of potential lawsuits, I would want to warn ppl anyhow since I see that as the primary mission of this DVD- to help BC pts with and w/out LE. Not really helping at all if they are not warned about the risk of LE and/or if they are not warned to consult their own medical team first before embarking on ANY new fitness program, even one designed by the best DR on the whole planet! ............. but I digress
0 -
Purple, yes I am aware of Kathy and I am so glad your pursuit to have a top notch person look at you paid off even if you have to empty your pockets. You may end up learning so much that in the end you may be spending less money, not having to go look somewhere else for quality care. You will have to share your experiences so we can all learn.
Just nordic pole walked 45 min. but my arms got out of shape ( well they never were in shape but they are worse now) since Christmas holidays and a bad cold. So I had to just kinda fake it along. Man, If I don't use it I lose it fast. MORE PRACTICE FOR ME!
0 -
4.6 miles for me today, thanks to lots of layover time in an airport. My trunkal LE has reasserted itself these past few days, which is rare lately, so ugh! So I guess I will be doing extra long MLD before bed.
0 -
Carol, Didn't you say a few days ago your arm was acting up, I wonder if the fluid is backing up into your trunc then? You might be having a slight overload flare. Wear your shapers as much as you can? Don't push too much with the Nordic poles, even put them down for a few days. Best to stick with walking with the bent arm.
0 -
You will have to share your experiences so we can all learn.
I am happy to!
One of the things she said last night was that she would prefer to see me do one really long session of MLD than to do the AM + PM ones if one was ' sloppy' or brief. No, I will not take that as an excuse to eliminate one, but I think I am seeing much more importance in the long one. At night, having the sleeve off and being on the couch watching TV for an hr there's reall no reason not to be opening up pathways and doing MLD!Sure wish I could demo some of her moves, but not at all possible, I'm afraid.When she is done, my wedding ring fits,and I feel great. It is quite amazing.
She DOES recommend the rebounder ( which I have ...walmart / $25)She says not to hold the arm up , but to swing them in a natural walking motion and to alternate feet with the gentle bounce ( see LIVESTRONG site )
Other than this, I might be able to answer something specific if asked. She is truly a gem!
0 -
I just got my rebounder yesterday! Yay! I'm starting with the recommended 5min.
It is so exciting to do something that is really supposed to specifically help. As opposed to general exercises.
0 -
Hey Victoria - We meet again! My LE'ist actually suggests it may " extend the life " of your MLD tx. She suggests having MLD and then putting your sleeve and hand protection back on and THEN doing the rebounder.
Just an FYI
It's tips like these (and people's results) that would really help a lot with the exercise DVD project.
0 -
EX. DVD UPDATE:
Hi Ladies
I should begin by stating that I am planning to post this on several LE threads. I would greatly appreciate replies by P.M.In order to add some more credibility to the EX. DVD project, I have been in contact with LOTS of people, incl. but not limited to toise in the med (research ) field. I am a tad discouraged ( NOT about the DVD, but for us LE pts )
Prestigious people are suddenly also ' thinking ' about making a DVD! I have been directed to links of DVDs for BC patients that have MISinformation! (made by DRS)
This is upsetting to say the least.At first, I thought- FINALLY! More options for us . Then, after following a link I see things like radiation causing LE ( but I didnt have rads) obesity ( Skinny all my life and now just ' mid weight) People who are inactive . ( I was active to my ability level) People who had lots of nodes removed ( SNB/ 2 here ) etc etc ... yadyadyadyda.... You've heard it all before. I've also seen the use of resistance bands touted, which I believe are contraindicated.
SO, I feel the need is greater than ever and perhaps a bit more 'urgent' for lack of a better word.
PLEASE PM me with your thoughts and whether or not you can be involved ( filming in MA) because if I cannot get enough Lymphedema Ladies from bc.org, I may have to consider my more local support groups. I MUCH prefer you ladies, who I have come to know and care about , but I wonder if the geography will stall the project. One thing I know for sure is that I would like everyone in the DVD to REALLY have LE. I appreciate your support .PLEASE PM me either way.
THX!0 -
Yes, I have been doing my rebounding right after my MLD in the morning. Actually I dry brush then shower, then MLD, sleeve/glove, then rebound. I also do the rebounding at night. (In addition to walking most days.) So I am actively working at this!
0 -
Victoria, you are investing tons of time in your LE care: what a model of good LE behavior!
My last two days had minimal activity, as I have been trying to catch up after being away nearly non-stop for several weeks, and I'm about to be away again for several more. I let work and house priorities nudge my exercise and LE care aside, so today I'm resolved to get the exercise in early and to follow it immediately with Lebed. It's so easy to get off-track, isn't it???
0 -
Victoria
Great job!
Just this past week, my LE'ist mentioned that I should do MLD, then put the sleeve on and rebound. I do this twice a day for 5 mins ea time. ( started at 3 ) I should specify too that ,my LE'ist suggested swinging the arms naturally as if in a moderately brisk walk. Feet alternbate in the gentle bounce mode ( this is just an FYI for anyone else who may want to know). Other than that, I have been doing qigong, stretching and daily indoor walking or some other kinds of aerobics.I am thinking of starting a resistance program soon. My Le'ist said that I could. She told me to begin with a small can - not even the 1 lb weight. we'll see.
I have been reading about the dry brushing , but never tried it. I will be interested in anything you have to share about your results wih that .
THX
0 -
Thanks guys! Well I'm retired (or rather, quit working) so I am fortunate to have the time. I don't know how you all manage to juggle all this and work, I applaud you!
My LE does seem to be down over all a few percentages and less seems to come back when I do swell. Since I started all these routines about the same time, it's hard to tell what is working, or it's the combo.
I had tried dry brushing years before but never stuck with it. My brush was really harsh and uncomfortable. Now of course I have the motivation to stick with it and I bought a softer brush. I actually enjoy it now. (Especially on my peach fuzz head) The brush feels good and I feel like I am doing something to help my LE so it's easy to keep it up.
I got a great deal on my brush on Amazon, as the price now went up almost $12. It's the:
Merben International Soft Texture Jute Body Brush with Cotton Cord Handle For Dry Use Only, 13" Length
0 -
Victoria - I'm calling it medically retired. One day I figured out how many hours a day I should be spending on my health - MLD, Lebed, exercise, eating healthy - who would have time for anything else!!!! I did dry brushing for a while after treatment, it was invigorating, but kind of fell out of practice - Maybe I'll get back on it!!
0 -
Victoria
You seem as tho' you have had this while, but I notice only a dozen or so posts ...do you mind me asking when you discovered you had the LE/ app. how long?
HTH do you ladies afford to ' medically retire "?! :>) This stuff sometimes feels like a PT job. I DO have hard time squeezing things in before work.Btw, I like the idea of the dry brushing. For anyone who does it or has tried it, if you get min. wouold you pls check this link :http://www.youtube.com/watch?v=panD5S72Tb0 It's not very long. I would love to be able to do something in the AM that doesnt take as long as MLD, then rebound , exercise, go to work and then do a long session of MLD. The thing is, I wasnt to do it RIGHT!
I looked at 3 youtubes. The first 2 were SOOOO fast it just seemed ridiculous. Though I know NOTHING about dry brushing at all, this one at least LOOKED LIKE an MLD technique or sorts .
Comments ? Linda. Victoria , anyone ?
THX0 -
I think I will post a new thread about my LE story to memorialize it, since my case is so rare. That way it is easier to find for anyone looking rather than here. I'll work on that later today.
As for the dry brushing; I too watched quite a few videos on You Tube. I found many of them contradict each other. And yeah, some are so short and some are too long. And some of them seem to contradict principles of my MLD routine. So I sort of modified and took what I thought was good from each of them. Of course I brush from fingertips up arms and feet up legs. My back I brush mostly downward, but I can't reach well, so it's not consistently down, even with my long brush I have short arms and some weakness. On my upper chest I brush across from left to right, because this is how I was taught to massage. Same with my stomach, rather than up as most show, I brush toward my belly button, as that is how my massage goes.
Since I then shower and immediately after do my MLD, I'm not so worried that I have precise drainage technique on the dry brushing. Just basically getting it stimulated and moving is good. I wouldn't say my technique is perfect, but it seems to be working and I'm ok with that. I timed myself this morning and it was about 7 minutes. Half way through I turn on the shower to get it warmed up.
Since you have access to a therapist, I would ask her if she has recommendations, or make a list of the body areas and how you plan to brush and see if she feels anything is counterproductive.
Do get a soft brush! We have endured enough!
0 -
Victoria, the brushing sounds very interesting. Thanks for sharing your experience.
Yesterday and today I got just over 4 miles of walking in, 3 of which very fast to get my heart working hard. Yesterday I also lifted weights for an hour at home. For a few weeks, I'm helping out with grandchildren, and today was the first day. Yikes, I'm not in my twenties any more!! This is hard work! But fun, of course. It does limit my freedom to drop everything and exercise, so today's miles included some stroller pushing. And for that, I'm sure glad I've been lifting weights for almost two years!
I need some MLD tonight (baby is kinda heavy...lighter than my chest press but heavier than my biceps curl, and I'm sure holding the baby for more time than I ever hang onto a dumbbell!). So, will do, before bed.
Carol
0 -
Carol, yes a stroller can really be felt in the arms. Good thing you lift weights. I won't push a wheelchair more than a hundred yards because my arms would rebell.
Walked in the snow today 1/2 hour and am calling it a day. Did a few Tai chi breathers too.
As Scarlett O Hara says. "Tomorrow is another day" I will have to excell another time.
0
