VISIBLE SIGNS OF LYMPHEDEMA - A PICTORIAL

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  • lago
    lago Member Posts: 17,186
    edited June 2011
    Thanks everyone. Still need to change the sheets. Tongue out
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  • Binney4
    Binney4 Member Posts: 8,609
    edited June 2011
    Thinking of you, lago! Smooth sailing, rest up, and be well!Smile
    Binney
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  • kater
    kater Member Posts: 526
    edited June 2011

    Thanks for the photos. Is it possible to have lympedeman in ONE finger (my ring finger)

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  • Binney4
    Binney4 Member Posts: 8,609
    edited June 2011

    Kater, yes, but it's unusual. Don't wear a ring on it until you get it checked out, though, as it could swell when you're not expecting it to.

    Let us know what you discover. Be well!
    Binney

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  • bestock
    bestock Member Posts: 322
    edited July 2011

    Lady In Bama,

    I also am OVCA survivor stage 4, almost 8 years , NO recurrances. There are several of us on this site. Had BC in 06, lumpectomy, then recurred in 08, and had bilateral mast, with reconst. No more recurrances.

    How is Chemo going?. I had huge debulking surgery with OVCA,and 18 chemos,

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  • LadyinBama
    LadyinBama Member Posts: 1,132
    edited July 2011
    Bestock: That is great to hear. I have chemo #4  on Tuesday (doing 6 total). Carbo/taxol. So far, so good. Main SE has been leg pain for about a week after chemo. It's pretty severe pain, sort of like others described the neulasta pain, which I luckily never had with  my BC. I'm not doing neulasta with this chemo. Blood work has been fine so far. Thanks for letting me know your story. I'm IIIA, had the big debulking, then they went back and took out omentum because a small place was found there. Is there a thread on this site for the OV/BC ladies? It'd be great to talk to others.
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  • bestock
    bestock Member Posts: 322
    edited July 2011

    Dear LadyInBama,

    YAY you are almost done with Chemo, my best to you!!!

     I did communicate with another lady that had both ovca and BC. She was under the thread taht talked about OVCA being mets from BC??

    We should start a thread, and maybe get others. I am glad you have few SE's, the pain hopefully will subside or they can give you something to ease it.

     I did get very low  white counts and felt a bit bad, constipation but not nausea very often  I only had neulasta twice and  had problems, with it, once got very ill and had to go to the hosp with an infection.

    The Lord has been good to me. I am healthy.

    I have a BC friend here, she has recurred for the third time and the cancer is all over bones, lungs, they use folsodex ? sp, and radiation, most likely she will start chemo again soon.

    Do you know much about that drug. are you BRCA pos.??

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  • happytherapist
    happytherapist Member Posts: 1
    edited July 2011

    LindaLou, thanks so much for all this information. I can tell you are a wonderful person. You are sharing hope for many people that like you have Lymphedema. I am a Massage Therapist, and just graduated as CDT, I am trying to find the most information I can get from patients, and yours experiences were very helpfull for me. I am in Orlando Fl., and I am open to give free lymphedema treatments for patients that can not afford  to pay it. Continue with your positive aptitud and be responsable of your own health, you are doing excellent job!

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  • LadyinBama
    LadyinBama Member Posts: 1,132
    edited July 2011

    bestock: I guess I have bad chemo brain, I can't remember how to start a thread.  there's a forum called Community something... that has specific group threads in it which is where this would go, but I don't remember how to get it going. Do you?

    Fosoldex, I think, is a bone strengthener.

    glad you are doing good. Chemo went fine today.

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  • MomGeo
    MomGeo Member Posts: 10
    edited July 2011

    This is a great post for me to find!  THANKS so much for the photos.  Had my BMX January 5, 2011 and haven't had any issues with swelling until 2 days ago and let me tell you - I've been watching my hand and arm closely to the point that I was already fitted for a sleeve.  I've been very active all through surgeries and 6 rounds of T.A.C. chemo and the swelling came out of the blue.  The back of my hand was puffy, but not bothersome.  I called my Oncologist office immediately on July 7th and they saw me the next day - unfortunately, they said I had the early stages of lymphedema.  I don't know why I am so upset...I fully knew it COULD happen, just hoped and prayed that it wouldn't happen to me.  They told me to go ahead and wear my sleeve but I'm noticing that my hand is much more puffy today.  Looks like I should have got a glove, too.  Starting lymph massage therapy next week and can't wait.

    LindaLou53:   THANK YOU for sharing your photos.  You've helped me come to grips with this yucky puffy.   :)

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  • lago
    lago Member Posts: 17,186
    edited July 2011

    MomGeo My LE was so mild when I got it that many really didn't notice but I too was very upset.

    My understanding is you should always wear your sleeve with either a glove or gaunltet. I always had gloves although my fingers don't swell… well a little in warm weather but everyone's does. Mine did before diagnosis in the summer so no LE issue.

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  • bestock
    bestock Member Posts: 322
    edited July 2011

    to LadyinBama,

    I do not remember how to do a thread, but I know there is already one about "bc mets ovca " or something similiar, there maybe more than a few of us dual cancer survivors. By the way how are your treatments going???

    Love your hat in your pix, i had (have) a few of that type, 18 mos of chemo and almost 2 yrs of baldness makes one a "hat person"

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  • olearca
    olearca Member Posts: 215
    edited September 2011

    LindaLou,

    I can not thank you enough for this incredibly helpful photo journal of LE.  I was certain that I had developed LE (albeit, very early) and I used your photos to guide me in assessing both of my arms.  Sure enough, I was offiically diagnosed by my MO yesterday - with grade 1 - or early LE, but other than some slight (almost unnoticeable swelling in my elbow), the main symptoms were heaviness and a weird aching/tingling.  No one would have picked up on it and everyone kept telling me I was fine or that it was the weather or my nerves regenerating.  I am only 3 months post BMx but had sentinel node bx and sure enough, now LE!  I was lucky enough to get into a CLT yesterday and she measured me and did some great MD and stretching etc.  I will now see her twice a week for awhile as I learn how to manage this.  I am really pissed off - sad, angry, overwhelmed - but these threads and your pictures have been such a great source of support.

    Thank you, thank you!!!!!

    Catherine

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  • LindaLou53
    LindaLou53 Member Posts: 929
    edited September 2011

    Catherine,

    I'm so sorry you have to join our "Swell Sisters Club" but am very glad you have detected the symptoms early and are receiving treatment.   You will find lots of understanding, support and a wealth of LE information here on this forum.  Also be sure to checkout the StepUp-SpeakOut website where you can find additional very helpful resources.

    http://www.stepup-speakout.org/Finding_a_Qualified_Lymphedema_Therapist.htm

    http://www.stepup-speakout.org/riskreduction_for_lymphedema.htm

    http://www.stepup-speakout.org/How_You_Can_Cope_with_Lymphedema.htm

    http://www.stepup-speakout.org/Emergencies_and_Medical_Care_lymphedema.htm

    I know this is not a condition any of us wants to have and you have every right to feel angry, sad and overwhelmed.  With time, education and proper treatment you will learn to adjust to the necessary lifestyle changes for good LE maintenance.  Catching it early as you did is SO IMPORTANT!  I think you have already taken charge and are headed down the right path to keeping LE under good control.  That is a huge first step! 

    You are already learning that having LE requires you to be PERSISTENT with your medical providers about what your body is telling you and what you know to be true from the many respected LE resources such as the NLN (be sure to check out the NLN Position Papers on the far right side of the website homepage)

    Finding the right certified LE therapist is also key to being successful at managing your LE.  Hopefully your current therapist is well experienced and up to date with her training.  Be sure to check out the link above for finding a qualified therapist just so you know what criteria you should be aware of.

    It makes me very happy if my photos play a role in anyone getting early detection and treatment!

    Best Wishes to you and your continued good health.    Smile

    Linda

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  • Denise2730
    Denise2730 Member Posts: 648
    edited September 2011

    I had 7 lymph nodes removed Aug 11th with my DMX and other than not having BP or blood taken from the left arm, was not told anything else. I do have an appt. with a PT later this month. Is there something I should or shouldn't be doing?

    What's the deal with Neulasta? Is that the shot I am going to get when I start my chemo to build up my immune system? I have fibromyalgia already and don't want anything else to add to my body aches. 

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  • Binney4
    Binney4 Member Posts: 8,609
    edited September 2011

    Hello, Chiluvr,

    Here are a couple of good sources of information about lymphedema risk reduction:

    http://www.stepup-speakout.org/riskreduction_for_lymphedema.htm

    http://www.lymphnet.org  (see their Position Papers on Risk Reduction, Air Travel, and Exercise)

    I hear you on the fibromyalgia.Frown Do talk you your onc about the Neulasta, as it's often an important addition to the meds we need to handle chemo. Wishing you smooth sailing as you journey through treatment!

    Be well,
    Binney

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  • Kay_G
    Kay_G Member Posts: 3,345
    edited September 2011

    These pictures are very helpful.  When I first noticed swelling last week, I was much more swollen than these pictures.  Saw the NP yesterday in the onc's office, and she said I definitely have lymphedema.  The swelling is less than in these pictures now.  It got better on its own.  I realize it's now all the way to normal, but can lymphedema do that?  Can it just resolve itself without doing anything to push it in that direction?  I have an appointment next week with and LE therapist.  The NP says they will teach me how to wrap the arm.  I am just wondering if it might not be lymphedema since it got so improved on its own.  Or is that what lymphedema does?  Flares up when something aggravates it and then gets better, but not all the way normal?

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  • LindaLou53
    LindaLou53 Member Posts: 929
    edited September 2011

    Hi Kay,

    I'm so glad you are getting early detection and treatment for your swelling!  To answer your question YES....early Lymphedema often presents with transitory swelling that can reduce on its own. It is still VERY important to get fully evaluated, educated on treatment and prevention strategies and realize that lifetime monitoring and intervention may be necessary.

    There are 4 stages to Lymphedema. 

    • Stage 0 is when tissue changes have already occurred on the extracellular level however there is no measureable swelling yet.  Stage 0 often presents with feelings of heaviness, achyness or nerve tingling etc. but for some may not have detectable symptoms.
    • Stage 1 is when visible or measureable swelling is present, however that swelling will resolve either by simple elevation, sleeping or by wearing light compression.  Swelling can come and go on a daily basis or may be visibly present only in certain situations of repetitive activity, overuse, hot weather, inflammations from bites, burns etc.
    • Stage 2 is when swelling and tissue changes can never return to normal.  Permanent tissue damage and fibrotic changes occur in Stage 2. Without proper treatment and ongoing maintenance, the lymphedema will progress. Reduction of swelling and fibrosis is still possible with Stage 2 with proper treatment, but the limb cannot return to normal.
    • Stage 3 is typically seen only in patients who have never been diagnosed and/or have gone many years without proper treatment and maintenance.  In Stage 3 the tissue becomes massively scarred, fibrotic, hard or "woody" in appearance.  Pitting edema is usually not possible in Stage 3 due to the firmness of the tissue. Chronic cellulitis infections and ultimately life threatening medical conditions are often seen in Stage 3.


    The good news is that with early detection and treatment, Stage 0 and Stage 1 patients may not be relegated to a lifetime of wearing compression garments and wrapping.  Recent studies have shown that particularly during the first year of cancer treatments involving surgery, chemo and radiation, Lymphdedma may occur due to the tremendous inflammation our bodies go through during that time.  If treated with MLD, properly fitting garments and prevention strategies during this time, many women may return to normal in both size and sensation once the inflammatory process has resolved.

    SO YES Kay, please continue to see the LE therapist and learn all the ways you can protect yourself from any further progression and keep everything under good control.  Yes, Lymphedema does flare up for many reasons.  Some patients can have many flares and then return to normal, but keep in mind that every time swelling occurs there is additional damage occuring in the extracellular tissue.  It is best to prevent flares when possible and treat them quickly when they occur in order to halt progression to Stage 2 or worse.

    If your swelling is resolving on its own with no intervention you are most likely a Stage 1 which means this is the ideal time for starting treatment.  Be sure to check out all the good information on the StepUp/SpeakOut website and also review the article on how to find a qualified lymphedema therapist.  You may want to ask your therapist next week about her specific LE training and approach to treatment.  Sometimes, finding the right therapist is the biggest challenge to getting started on the right treatment path.  Please, let us know how your appointment goes with the therapist.

    Best Wishes,

    Linda

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  • Kay_G
    Kay_G Member Posts: 3,345
    edited September 2011

    Thank you for that information Linda!  I will let you know how the appointment goes and start being active in this forum.  Hopefully, I am Stage 1 and can stay there.

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  • Patriotic
    Patriotic Member Posts: 281
    edited October 2011

    Thank you for this info. It is very helpful.

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  • sacphotomom
    sacphotomom Member Posts: 366
    edited October 2011

    I have a question for all you wonderful gals here.  I was told to not lift anything over 5 lbs.  . Does anyone know, is that for the rest of your life or just during the healing process? I have had swelling and its been controlled now.   Its been 17 months since my DMX only time I have really had swelling is when I over did it outside working on my garden this summer, learned my lesson about that fast, dont want to be wrapped up again if I can help it!

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  • rassie
    rassie Member Posts: 4
    edited November 2011

    My DMX was Aug 2011 (no recon). I was more devastaed by 10 nodes (all negative) being removed than I was by my breasts being removed. Why? Because I knew about the risk of lymphedema. I made sure that I saw my PT (I also had a seroma) to learn how to prevent this. At first lifting anything was dfficult but I am now up to about 25 lbs. Have a compression sleeve for flying and anytime I have to leave town (I live at a high mtn elevation, then go higher before I go much lower.) My onc tells me that I have worried more about getting LE than any other patient he's had! All I know is that I do my MLD religiously, wear my sleeve, and I also wear a LE alert bracelet. Thanks for the photos - helps to know what it looks like. My best to all of you.

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  • rassie
    rassie Member Posts: 4
    edited November 2011

    Oops! Make that August 2010 for the surgery. It's been 14 months. Wasn't lifting anything for a long time after surgery. I too had no qualms about asking for help.

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  • Binney4
    Binney4 Member Posts: 8,609
    edited November 2011

    Rassie, welcome!Smile Brava for doing all the reseach and coming up with a workable lifestyle to protect yourself. May you never have any "swell" days ever!Cool

    Be well,
    Binney

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  • rassie
    rassie Member Posts: 4
    edited November 2011

    Many thanks to all of you for your information!

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited November 2011

    Thanks for your work on this LindaLou.  It's particularly useful to me at the moment as I feel I have LE but the doc doesn't.  Your info gives me power in our next discussion.  Thanks again.

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  • ailenroc
    ailenroc Member Posts: 308
    edited November 2011

    This is great information. Thank you for posting such a thorough guide.

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited March 2012

    Linda Lu - I appreciate your commitment to this subject.  I knew this morning w/o a doubt that I have LE.  Been progressing since surgery, but the BS and LPN said the swelling would go down, senoma, they said.  I put on a dress today, it was big on me compared to last year.  Looked in mirror, dress was hanging, the neckline as drooping, the left sleeve was huge, the right sleeve was tight and hiked up over my upper arm, even when I pulled it down, it was showing the difference in the arms.  Hand is tight, indentation doesn't go away, tendons do not show. 

    Off to the LE specialist with me.

    Thank you for all the info.

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  • Binney4
    Binney4 Member Posts: 8,609
    edited March 2012

    Essa, so sorry this had to be a self-diagnosisFrown. Here's help for finding a well-qualified lymphedema therapist near you:
    http://www.stepup-speakout.org/Finding_a_Qualified_Lymphedema_Therapist.htm

    Please keep us posted and let us know how you're doing!

    Be well!
    Binney

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  • StarWish624
    StarWish624 Member Posts: 101
    edited April 2012

    The Boy Scout Salute surprised me. There is a real difference (and the lymph. hand hurts when I try). Thanks for the info. I'm newly diagnosed this week.

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