Does lymphedema ever improve?

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3boys4me
3boys4me Member Posts: 319
edited October 2014 in Lymphedema

I'm hoping those of you who have experienced lymphedema can answer some questions for me.  Mine cropped up about a month or so ago.  I had a unilateral mastectomy 9/6 with 14 lymph nodes removed.

In October I flew.  I requested a prescription for a sleeve and gauntlet from my surgeon prior to my flight (after reading this board and the info provided by the lymphedema specialist while still in the hospital) but was basically ignored.

During the same time, I was repeatedly aspirated after my drains were removed.

Who knows what really brought this on, but it's here.  Luckily it early stage.  I now have a sleeve and gauntlet that I've been wearing daily.  It's ugly but not uncomfortable, so I really don't mind it as much as I thought I might.

My questions are:  my lymphedema specialist said if I lost weight, the lymphedema would likely improve.  I do need to lose about 40 lbs.  Has anyone else had this recommendation and if so, has anyone been successful in losing weight and seeing improvement in the lymphedema?

Also, I find that hotter and more humid weather seems to make the lymphedema worse.  Anyone else experience this?

And finally, do you find you have to wear the sleeve and gauntlet EVERY day or are you able to give yourself a breather on occasion without experiencing increased swelling?

I had another question, but my chemo brain seems to be causing me mental problems AGAIN.  Oh, now I remember, it's about sleeping on that side, but I'll read through the other thread as I'm sure everyone has chimed in on that question already.

Sorry for the long winded post, but I've read through the threads and many of you seem so knowledgable.

Thanks so much,

Lisa

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  • NativeMainer
    NativeMainer Member Posts: 10,462
    edited December 2007

    3boys,

    I developed LE in September, so I don't have a lot of experience with it yet.  Binney is a real expert and very, very knowledgeable aobut LE and will answer you in detail when she sees your post, and she usually posts almost every day. So you should have some more info within a day or so.  Since my LE is truncal (breast and back only) I don't wear a sleeve.  I do wear a compression bra/vest almost every day (I have to wash it occasionally).  Others will be along soon and share their experiences.  Welcome to the club, wish we didn't have to meet here. 

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited December 2007

    Hi Lisa -  sorry you've had to join us here ...  lymphedema is such a persistent thing -   we all seem to find what works for us (or not) and sometimes have to get pretty creative to get persistent swell spots of problematic areas under control.   My lymphedema (early stage) began in July of 2005 -  I use a night sleeve (jovipak) and day sleeve/gauntlet (bio-concepts) every day.  I can sometimes go without my day sleeve for a few hours in the evening - but I really notice a heaviness and tiredness in my arm when I'm not wearing my sleeve - so I don't do that very often -  I've read about others here who can go for a day or so without using their sleeve/glove  ... so ...  once your LE is under control and you know how to get it back in control yourself -  you can experiment a bit and see what works for you.

    changes in the weather affect my LE -  hot, humid,  air pressure changes ,

    altitude changes affect my LE (if I drive over a mountain range) -  I spent a week by the ocean for vacation and that was heavenly -  my LE did not bother me at all ...  I certainly noticed the difference when I got back home...  

      

    gentle hugs,  

    Doreen 

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  • Barb1953
    Barb1953 Member Posts: 479
    edited December 2007

    Hi Lisa, My first bout with LE was 4 yrs ago. It started while I was scraping wallpaper. The next day, I had no knuckles !! I had'nt even heard of LE. My radiation onc sent me to therapy.I had masssage therapy everyday for one week. They taught me how to wrap my arm,which I did everynight for a few months. I also wear a sleeve& gauntlet ---every day at first, but now I only wear it when doing anything strenuous, likeyard work. It does seem worse in the hot weather. I can usually tell when I need to put my sleeve on, my are feels real heavy. So far mine is pretty much under controll. Good Luck to you.

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  • neat
    neat Member Posts: 133
    edited December 2007

    Lisa - Here are my answers to your 3 questions. I hope it is of help to you.

    Yes, even though I was not heavy, I lost weight and it greatly helped my LE. I had been 125 lbs and I went down to about 113 lbs (5'5" height). My LE is so much better at the lower weight! My LE is highly influenced by what, and how much, I eat. My LE therapist told me to restrict my diet: low sodium (salt), low calorie, low fat, high fiber, no caffeine (that means no chocolate - ugh!), no alcohol. I generally strictly stick to the recommended diet and noticed my LE is much better when I do.

    Yes, hotter, more humid weather definitely makes my LE worse, so I try to stay cool.

    I was diagnosed with LE over a year ago. My LE is widespread: bilateral, truncal, plus swelling in the legs and feet (I had seven surgeries). I used to have to wear compression garments on arms, hands, trunk, plus waist down. Now, as my LE therapist predicted, my LE is much improved.

    I wear the compression vest as needed. I wear my right sleeve and glove only when I do my LE arm exercises. I wear my left sleeve a bit more, but usually go sleeveless. So, most of the time I am compression garment free.

    Best wishes for good health!

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  • Binney4
    Binney4 Member Posts: 8,609
    edited December 2007

    Hi, Lisa,

    Do you get the impression LE can be a very individual thing?! Especially the question of garment usage, as you see! For me, with bilateral arm, hand and chest LE, garments aren't optional. (Sigh!) Without them I swell pretty quickly, even faster in hot, humid weather. So night and day I use garments. Just for the sake of sensory stimulation, I take them off for an hour or so every evening and relax.

    I'm glad you're finding the garments reasonably comfortable. Don't know what brand you have, but a couple of manufacturers make them in colors. If you don't need custom-made garments, Lymphedivas are classy, and for either off-the-shelf or custom garments, Bio-Concepts offers about 40 different colors (or combinations of colors, if you're a sports fan.)

    You don't say whether you've done LE Therapy, but if not that's an important starting place, and it gives you the tools you need (massage, bandadging, exercise, and skin care essentials) to regain control if it gets out of hand. (Hmmm. That was not a pun...)

    Here's an article about recent research about weight loss and LE, which matches Neat's experience:

    http://www.upmccancercenters.com/news/reuters/reuters.cfm?article=11290

    And here's a link to an article about medical tax deductions that points out how you can deduct expenses for weight-loss programs Laughing :

    http://www.bankrate.com/brm/itax/tips/20010323a.asp

    Hope some of that helps. I'm really sorry you've joined the ranks of us "swell" ladies, but glad you found us. 

    Be well!

    Binney 

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  • OLBinNJ
    OLBinNJ Member Posts: 236
    edited December 2007

    Lisa,

         I have had LE for about 8 years now.  I wrap every night, but don't wear the sleeve/glove very much.  My pt told me that wrapping is a much better way to keep LE under control than the sleeve.  The sleeve keeps it from getting worse, while wrapping helps it get better.  When you fly or do physical work or exercise it's better to wrap.  If you need to, wear the sleeve/glove during the day in addition to wrapping at night.  Hot, humid weather can make LE worse, and on those days, I usually end up wrapping earlier in the evening.  I would learn to wrap, as I think it's the best treatment along with the massage.  As Binney said, everyone's different.  With time, you will learn what works best for you.  Good luck!

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  • inspiewriter
    inspiewriter Member Posts: 876
    edited December 2007

    Mine hasn't improved, but I do have a friend who is now LE-free after 5 years.  She credits wrapping for a few months and then lots of movement, such as gardening, for the improvement. Also losing a few pounds.

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  • FloridaLady
    FloridaLady Member Posts: 2,155
    edited December 2007

    Please no more bad news about heat and stuffUndecided I live in Fla with 75% humidity year around.  We still hitting 75 degrees most days.  I will start P/T tomorrow and trying to get approved for acupuncture.

    Yuk! this has been worst than chemo for me.  I was told by my surgeon that I have some kind of (medical word) condition that means my cartilage above my ribs has inflammation that will not go away because of my radical mast. damage?  Anyone else heard of this?

    Living in hope,

    Flalady

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  • TenderIsOurMight
    TenderIsOurMight Member Posts: 4,493
    edited March 2008



    Flalady,

    I suspect he's referring to costochondritis, an inflammation of the cartilage which joins the ribbone. It can be acute or chronic. I have chronic: pain right along the area next to the sternum. I feel it's due to the radiation I got, maybe to the mastectomy, but it's always sore to touch in particular. How are you doing with your truncal LE, FlaLady? Has it lessoned some?? Is your arm any improved? That Florida heat is not great for this with it's attending humidity.



    Neat: you're a wisp of a lady. I'm 5'5 and use to be about 116, but now am 128. But I am dieting, and pretty much follow the advice you were given except I have my morning coffee. Alas, I don't even like the flavor of coffee as much as I use to, but it perks me up!



    My LE I wrap at night, arm sleeve during day, but have needed the glove less.



    Take care ladies,

    Tender

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  • 3boys4me
    3boys4me Member Posts: 319
    edited December 2007

    Thanks for all of your info.  It sounds, just like with bc treatment, that treatment for lymphedema varies from person to person.

    Binney - to answer your question, I did have MLD done and was taught to do self MLD which I've been doing daily.  And thank you for the link.  I have a gym membership, but would like one with an indoor pool and I've heard swimming can be helpful.     

    A night sleeve or wrap was not suggested to me...  but it would be nice to by LE free as oppose to just maintaining.

    Thanks again for your responses!

    Your LE sister, 

    Lisa

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  • righarm06
    righarm06 Member Posts: 2
    edited December 2007

    I developed lymphedema after my surgery in Nov. 05.  I went to therapist 3 times already.  I've learned to massage and wrap my arm, told losing weight might help, I'm working on the weight part.  My lymphedema isn't under control despite wearing daytime and nightime sleeve.  Heat definitely affects it.  When arm is full of fluid it feels heavy.  I'm a new user to this site from Eutawville, SC.

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  • Binney4
    Binney4 Member Posts: 8,609
    edited December 2007

    Hi, righarm, and welcome!

    I'm sorry you're having such a hard time with the rotten lymphedema, but glad you've joined us. Good for you for tackling the battle of weight loss. It sure is hard to do, so I sure hope the benefits of losing it are everything they're cracked up to be! Hmmmm. Here I sit munching carrot sticks. Care to join me? Tongue out

    Looking forward to getting to know you!

    Binney 

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  • rward2121
    rward2121 Member Posts: 1
    edited December 2007

    Ruth here, radical on Feb 10, 2004 (18/18 and I'm still alive).  I went through chemo fine (no prob with lymphedema), exercised almost every day vigorously for an hour, did swimming, treadmill, walking . . . )  Then, a couple of days after the first radiation (had been swimming really really hard the morning of my first radiation treatment, really concentrating with my arms cause I was told that all arm movement was really good to prevent lymphedema), I noticed a little swelling.  Showed surgeon, he told me to see therapist, and it became worse from then on.

    Long story short, it is a chronic problem now.  Very depressing, and very debilitating, but only psychologically.  My therapist says that right sided mastectomy people come in for treatment more often than left.  She thinks it is because of more use of the right arm.  I've tried to look up studies, but there is nothing.  It doesn't really matter.  I am a believer in visualization.  Try it, it cannot hurt.  Visualize it going down in size!  Don't do hot soaking baths with your affected arm in the water, and don't use the sauna.  Heat definitely aggravates it, and wrapping definitely helps.  The newest pump system is supposed to be very good.  I'm sorry you're in this club.

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  • sccruiser
    sccruiser Member Posts: 1,119
    edited December 2007

    Hi,

    I was diagnosed with breast LE in Sept 2004, after asking about flying and LE precautions. I remember when I was sent home in June 2004 after lump & SNB, I asked what my restrictions are.

    Told, just do what feels okay. Felt so okay on the vicodin, I quilted all day. Rather sore the next and arm felt funny. Two flights in Aug04 contributed to the breast LE (think I had stage 0 in the arm--ached & felt heavy but no swelling). Saw LE therapist in Nov/Dec 04.



    I have such neuropathic pain, I am on many pain meds. Because of that I decided to have LE breast removed and have TRAMflap recon. Developed truncal LE. Since then, even with MLD, compression pump, 1.5 hr water exercise 5-7 days/wk, walk 5 miles 2x week, evening & daytime garments with compression from below knees up to shoulders and down both arms--I still have swelling. Although my left side is stage 0, my LE therapist watches carefully for any changes in my skin & tissue on left side.



    I was told that being overweight can effect LE symptoms, and I am working on losing some. It is very difficult for me because the meds I take (6 of them) all contribute to weight gain. I am now having back & neck injections to see if I can eliminate the majority of the neuropathic pain and reduce my meds.



    Some days are better than others. My LE therapist is helping me work up a schedule (I'm off on disability) to mimic "work hardening" so I can strengthen myself slowly without causing more swelling and discomfort.



    Heat is a huge obstacle for me. We keep our heat at 62 degrees in the winter. In the summer I end up in front of a fan. I don't go anywhere after 10 am or before 7 pm if I can help it--except to swim and drive car w/AC (we don't have A/C in the house). I was up in the mountains last June to visit my cousin--the heat was in the high 80s--I was nauseous and in tremendous pain for 3 days.

    Loved her place, but couldn't wait to get home to my little cottage in the woods with a micro-climate that never goes over 78 degrees in the summer except for about less than 10 days here and there from June-Oct. Not sure how I'll go back to work next year (I work part of the summer)--too bad they don't make contained LE garments (like the guys in space wear) with built-in A/C!! Now there's an invention idea for some one, and plus make it inexpensive!!



    Good luck to you,



    grace

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  • ahdjdbcjdjdbkf
    ahdjdbcjdjdbkf Member Posts: 645
    edited October 2014

    This is motivating me to lose weight as I am in a flare up and my weight is up. I'm taking responsibility but I'm feeling really angry at my boyfriend for always pressuring me to eat out as it is the worst thing for me. He's a pro-level cyclist and he doesn't take responsibility for being properly fed so always wants to go out to put down thousands and thousands of calories. It will happen later tonight. Meanwhile I am in a major flare-up and should just be going home to drink my veggie juice  

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