Share about how much physical activity can you do?
Comments
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Outfield Good post re. lymphedema info. What I'm learning is that lymphedema is different in everybody, and there are no hard and fast rules. And what I dealt with two months ago is completely different than what I'm dealing with today. About the tendon-like band of axilla tissue - could this be cording? I have had similar cording that I'm massaging and trying to work out.
Momine I know very well that feeling of the arm getting heavy. Do you have access to a PT experienced with LE? As mentioned here, the key is start low and go slow.
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Joy, it's kind of an extreme cording. I had the common cording after surgery, which is thin, like piano wires. My lymphedema therapist was very helpful with that cording. Then, during radiation, I developed the really thick tendon-like structure. Everyone seems to agree that it's a cord that got more fibrotic during radiation. I tried and tried to stretch it - 20 minutes a day for months - and it didn't budge.
Momine, I started by doing my arm exercises with no weights at all. They were a set given to my by my breast surgeon, and I think put out by the YWCA. For my first weight, I use a tuna can. That was in late summer, 2010. I now use 15 lbs (about 6.8kg) for biceps curls, can do 30 pushups. It's easier to build-back muscle mass you've already had than to build up to a totally new level, so having been strong and athletic before treatment definitely helped.
I have also had to buildup with swimming. I'm not a particularly good swimmer. I just have done a little more each time.
I wish there were a more objective way to measure what's going on in an arm or chest wall when we're exercicsing. I have not really had a feeling of heaviness with my lymphedema. My arm does at times feel heavy, but that feeling doesn't correllate with my lymphedema and I'm not sure what it is. I suspect something neurologic.
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The odd thing with me is that I can do the activity for a long time, with no pain or heaviness. But a day later...incredible pain. I usually run and walk, alternate every 5 minutes for 80 minutes. This never causes a problem. The repetitive swing motion of the chuck it, my lab can chase for hours, feels fine during activity. It's the next day, like you said Outfield. That's why I'm afraid to go back to weight lifting. I tried sit ups, only a few, I used to do 100 bicycle or more depending on the day, laying on my back. My back and torso were in great shape. Now I'm afraid again because I"m not sure how the muscles will react all interconnected. Is it muscle, bloodflow, tendons...what causes LE to flair? My PT showed me a diagram of the entire body and lymph nodes, they are literally everywhere. I still have not had swelling but I sure don't want to start either.
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rianne LE flair in everybody is different. I can walk or strenuously hike all day and not have a problem, and for others it's a problem. I can't work my arms a lot without feeling some swelling, usually the next day. I've been working up arm strength a little bit at a time. I guess the message is to not do something for a long time, unless you've worked up to it.
When I started upper body work after surgery, I did minimal theraband work starting with 5 reps. Then after a few days, repeated 5 reps and added a few more. Theraband work for some can be extreme. Going through the range of motion without weights or bands is good too and that may be the right place to start.
There are nodes everywhere, but the affected area is where you need to be concerned unless there is an issue with overall lymphedema. As it was explained to me, the lymphatic system works in quadrants. So for example, if you had nodes removed at the left axilla, the left trunk and arm are affected. The leg on the left side wouldn't necessarily be affected. I learned manual lymphatic drainage, and massage away from the left side pulling lymph fluid into other areas to be cleared. This has been a very effective and gentle way for me to manage my mild lymphedema.
outfield Good luck with your cording issue - and hope that the release surgery will take care of it.
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I had a frozen shoulder after surgery for which I had PT. It fortunately was resolved before I had to start radiation. Durin radiation therapy I exercised my arms at least an hour a day, often two hours, one in the morning and one in the evening. Exactly as Joy said, without weights or bands. Dancing with music. My rads onc was very pleased. I kept this up for months until I joined a gym and a personal trainer taught me to exercise with therabands. I used these and other elastic bands everyday for several months at home while graduating to free weights and machines at the gym. So start easy and progress. And yes, progressing means pain for me. Fortunately I never got LE. I have gotten swollen from flying and from a 6 hour hike in the mountains carrying a heavy pack. Massage helped to bring it back down each time.
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Joy, yes, I have a therapist who sees me weekly. She seems to think that I should be able to exercise in future. She wanted me to swim, but that won't work, so she said she would give me some other exercises.
Outfield, ack! The cording you describe, that would be me. I got all kinds of cording during chemo, but it got better with PT, time etc. Then I had rads, and now it is a total mess again. This is really frustrating.
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I have been taking time to learn about exercise and how to do it effectively on its own and also how to effectively exercise after bilateral mastectomy. Needless to say there isn't alot of information out there on the later. I think the thing is, you should start exercising by doing the bare minimum of a full workout. Like if the goal is to do 20 reps of something, do 5 the first week, 10 for the next two weeks, 15 for two weeks and then start doing the twenty. Always in your best form, form trumps numbers.My OT/LE specialist says I should be able to do whatever I could before surgery, as long as I treat my body with care and let it know what I am going to do before I jump in whole hog.
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I was an avid cyclist for years and thought I might be able to ride right away after my double mastectomy. Since I am a male reconstruction wasn't really an issue.
I couldn't really ride right after surgery, since I had those damn drain tubes (three of them) in me, so I thought I'd be smart and concentrate on upper-body resistance training. I used a rowing machine, but I think I started too early (just a week after surgery). I made some progress, but it hurt more than it should. Just as I got over that part, I went on to the next phase of my treatment. Chemo sidelined me pretty hard and I couldn't ride at all. The rowing machine was there, but I was too tired to get on and work on it.
Now that I am two months out of chemo, beginning to recover and dealing with Tamoxifen's side effects, I am trying to fend off weight gain with my bike and using the rowing machine to build upper body strength (although "strength" may not be the appropriate word, since I still can't do more than five or 10 push-ups). I used to be an athlete ... now I just feel like an old man, but I am making progress. -
REALLY sorry to hear that Charles. I hope you regain all your strength and get back in the saddle soon! Is it true your muscles never forget? I am very fortunate I only had UMX and no chemo or rads. I thought it is unusual you had a positive node with DCIS. I thought DCIS was contained "insitu" and did not advance to the nodes. Regardless, fitness is so important and I keep wanting to do more and fall back.
MT1, your way of progressing sounds good and I may follow that lead. I'm going to the cancer center today, someone mentioned there is a work out facility in the basement. I may check it out. I need a schedule to follow, that is specific, like you said MT1.
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Rianne,
I wonder if I should change that positive node to zero, since it involved just one node and the pathologist said she found three cells.
I also need to get the hang of all of this cancer short-hand. While my cancer originated as DCIS, the tumor certainly had busted through the ducts and was already growing rather aggressively. Oddly enough, the tumor was precisely at the site of a major hematoma I suffered a couple of years ago in - of all things - a bike crash. Does that warrant another label? -
Charles, I often sit in front of this forum computer screen and wonder what the initials mean.
It could take your body up to one year to settle and normalize. You will get your function back. And probably even your pre-cancer function. I am not one who should be saying this because I am the most impatient person in the world as it pertains to my own body, but it takes time. I completed radiation (I have neoadjuvant chemo, surgery, then rads) at the end of last August. Two months later I was still winded upon walking up the subway stairs. I am now seven months from my final active treatment and although I have a frozen shoulder, and cannot perform upper body exercises just yet, I can still feel my limitations. I plan to see myself through the whole endeavor and to be healthier than when I entered into this whole deal. I think bodies respond well to our thoughts, so I am telling my body good things.
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Charles.....the strength will come back. I think it took me about 8 months past the end of chemo to get there.....or to about 97%. The last 3% took another six months.
However, you weren't able to exercise during chemo, whereas I was able to. So I would suspect that you have a lot more muscle mass to rebuild. Chemo also affects cardio stamina and that takes a while to recover.
I still do better with some GU gel when I ride, so buy that by the box.
Right now, I am hurting from my crash on Sunday. Talk about feeling old!!! I could barely walk when I got up yesterday and had to plan potty trips. I am much better today. But OUCH!
You will get there. It's a case of training and rebuilding which takes time. So does the healing curve from treatment.
A lot of this is just pushing through and the discipline to exercise when you are dragging. I was determined that I was going to stay the healthy, vital woman that I have always been. And I got there.
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Charles Hope that you are able to get back in the saddle really soon. As we discover, things move at a different pace after BC dx and surgery, treatment, etc. And the follow up drugs do a number on the system too.
Claire Wow - hope your crash bumps and bruises are better soon. Good for you for getting out there and giving it your all! I'm inspired!
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Claire,
I appreciate the advice and encouragement. It was mostly really weird balance issues that kept me off the bike, which was hard, given that I used to train year-round even here in Wyoming. The GU advice is good and I got a huge care package from the crew at Honey Stinger and another from Clif Bar, so I will have plenty for my three jersey pockets.I hope you recover from the crash. I did a recent recount of all of my pavement time during my racing years and I am surprised I am still alive.
Joy, the chemo drugs really did take their toll. Tamoxifen hasn't really been too bad so far, but that may just be that it doesn't suck nearly as bad as the whole ACT thing. -
Charles--when did you finish chemo? I hope you feel better soon. I had the A/C followed by the T. Did you have all 3 at the same time? That must be really bad.
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Mary,
I finished chemo in December.I did not have all three at the same time. I started out with big doses of A/C every other week for eight weeks. I was scheduled for 16 successive weeks of Taxol, but suffered from a cardiac side effect (my heart was slowing down and skipping beats). That, coupled with serious problems with neuropathy, caused my oncologist to pull me off four weeks early. I was happy, since I got Christmas off. I am now getting back on track. Now the only barriers to regular rides are work (I had to work through chemo, but now have to work extra to make up for lost time) and weather. I plan on riding a lot this week.
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Charles.....I was fine with Taxol. I worked all through AC as am self-employed. Not fun, but I really did learn to manage energy. One of the benefits of having done endurance events.
You will appreciate this story. I did not have neuropathy or balance issues. I was in a study where I got SIX AC followed by SIX Taxol. Both were every two weeks.
Anyway, a substitute oncologist asked me at the end of Taxol about my balance. My reply: I did a 30 mile bicycle ride yesterday!!!
Anyway, we do recover from all this. I am hoping to get back to "better than ever". This will be after the bruises heal. Lots of cycling to be done this summer.
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Charles, you are still so early in the recovery process. I had nearly every side effect in the book with chemo, lost 20% of my body weight, admitted for a neutropenic fever - you name it - and all I could do was walk. Well, except for when the skin was sort of sloughing off my feet - at those parts of the cycle I road gently on a stationary bike. I didn't maintain my previous fitness level at all. I felt too weak to consider getting on a bike until at least 3 months after radiation. So I think you're doing well.
Your body really does come back. It takes work and time, but what felt for me like utterly pervasive changes in myself, like the feeling that I was just staying upright by hanging on my bones, in time slipped away. I hope you enjoy your rides this week.
Melly, I agree.
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Interesting thread. I always have mixed emotions reading these. Everyone's journey is so different and it is always disheartening to me to be three years of intensive physical and lymphedema therapy into this and have people relate how much joy they take in doing physical activities I've had to give up. I used to do that. It sure isn't for lack of trying, gut, fortitude, ability to tolerate pain, or motivation that it was given up. As a matter of fact every day I work out harder and tolerate more pain than I ever have in my life trying to recapture just a portion of it
Comment on the first page about wondering why this can be hard to recuperate from since muscles etc aren't involved caught my eye. Actually they do take the pec fascia off with the breast in a mastectomy. They often do in the lumpectomy cavity. Not much has been done quantifying the effect that has on muscle function afterwards, but, given how differently everyone heals and scars in it doesn't seem odd to me at all that we all respond differently to the surgery and treatments.
Hugs to those of you experiencing many of the limitations of treatment. Kudos to those of you managing to recuperate with minimal effects. To everyone in between just remember there are many in the same spot and in one way or another we're all in this together
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Claire and Outfield, thank you for the encouragement.
I went through a bunch of weird side-effects from Taxol, including that "rare" cardiac problem (as if being a male breast cancer patient didn't already make me enough of a statistical outlier). I might have been able to ride now-and-then during chemo anyway, but for the fact that I live in Wyoming and it gets really cold here. One really awful thing that chemo did to me was make me incredibly sensitive to cold. I used to spend winters skiing in the back country and even riding in sub-zero weather. This past winter, I spent most of my time curled up in front of the fire place.Anyway, weather is no longer a barrier (or excuse), my increasing red cell count seems to have addressed the sensitivy issue and the bikes are ready to roll.
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Six weeks before my MX, I had emergency appendectomy with a burst appendix. Honestly, that surgery was worse than the MX by a longshot. When I got home all I could think about was getting outside and hiking with the dog. IT was Feb. 2011 and the ice storms were incredible. We have this awesome property (belongs to University) about 100+ acres, 3 good sized lakes and rolling hills. The ice was everywhere, the trails were like an skating surface. I could not let it go. I had to get on that da_ _n trail with three holes in my abdomen. And away I go, taking small steps, sliding some, I let the dog go unleashed as usual. I totally believe I had angels on my shoulders because I did not fall. My surgeon screamed at me when I told him. I was scared but kept going forward, actually turning back would have been worse, especially with the hills. I look back and think I must have been nuts. The subconscience will gets you where you want to go. I get up in the AM and think what exercize can I do today and map my day around the work out. Even setting 20 minutes aside with the activity in your head helps.
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Charles I am sure you will recover your strength and again be an athlete!
I cannot imagine doing a rowing machine a week after surgery, so that is something to say, right there. I was very weak and pretty pathetic for some time. I could take walks but I dared not pick up a weight.
I am two years out and do everything plus more that I ever did. I ride horses, carry their heavy tack around and they pull on me a lot - no problem.
Give yourself the time you need. Your body has never experienced what you just went thru and that's why it doesn't just spring back automatically. But it will. Sounds like you were in excellent shape going into bc and that is a great thing. You'll be back in form soon enuf!
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This is the first day I can say I feel pretty good. It feels good.
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That's great, MT1! Hope you're on a long roll!
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I did it! I went kayaking yesterday! Oh, it felt so good to be back out on the water! I tried to take it easy...except, of course when I was crossing the boat channel and paddeled like mad to get across quickly. So far so good. No soreness, no heaviness, no signs of LE, yet. I am raising my arm on the UMX/SNB side straight up and pumping my fist 10 to 20 times, as often as I can. I read that this can help in keeping things flowing like they should. So far so good!
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FLwarrior Yay! So happy that you're back to kayaking - and hoping that LE for you is not an issue.
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Congratulations FLwarrior!!! I had my 6 month appt. with my oncologist. She said as long as you try to keep your arms waist level or up, that helps the fluid flow. I guess if you do push ups or scrub the kitchen floor for hours, not good. But it sounds like kayaking is a good exercise and the arms are in constant movement in the right direction. She said it is definitely good to lift had weights up towards head and back down to waist, add weight over a 2 weeks or so. Strengthening is always good.
FLwarrior, keep us posted with good news that LE does not flair. That will encourage me to do more.
Rianne
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I started working out with a trainer 12/9/11. I could only lift 2lbs over my head...and now over 25lbs.
I am training to 3 day 60 mile walk in the fall. Also have found yoga to be great.
Ask your doctors for PT and seek out a trainer who will listen to what you have gone through and work with you
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