Home Forums Melanoma: Stage III How are you controlling the swelling and lymphedema?

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  • #20770
    GaylaB
    Participant

    Starting the therapy and wearing the compression, however I am looking for ANY advice that could be useful.

    My doctors are talking disability due to the lymphedema and I have a 6 year old…..

    If there is any help, answers, advice out there…Please respond!

    Currently I am doing myofacial therapy, manual lyphmatic massage, yesterday the therapist did ultrasound and suction on the leg, T home- I am using light therapy and a TENS unit, the massage pillow up and down the outside and inside of the leg, taking Tumeric for inflammation, drinking Noni, Mangosteen, Goji, Pomegranite, Blueberry, and ordered the Adrenal supplement which should be here today….

    I am doing everything I can think of but someone on here has to have conquered this…

    Cancer is GONE- PET and chest X-rays and skin scans, no chemicals needed but I must get this lymphedema controlled…HELP! :?: 😮

    Gayla

    #57536
    Catherine Poole
    Keymaster

    You might try from our resources tab above: lymphnet.org

    They have a lot of info on lymphedema. Shirley is the other expert here! :)

    #57537
    Shirley Z
    Participant

    Hi Gayla,

    Since you just started the manual lymph node drainage I would definitely give it some more time. I went 5 days a week for a month and by the time I finished it had really improved. Do I still have problems. Yes, I do. In fact the past couple of weeks I have been totally miserable. I still cannot be on my feet very long. When I sit my foot has to be elevated. A Quick 2 hour drive to see my mom takes a lot longer now. I have to stop often and when I get there I’m miserable. But despite all that I have been Ned for 3 yrs. I was diagnosed 6 yrs ago.

    Yes, you should file for SS disability. You have paid into it and are entitled to it. Unfortunately, even if you are approved You won’t see a check for about 5 or 6 months.

    I was on it and just had my review and lost it. They said my cancer had not returned for 3 yrs, so I could go back to work. Never mind the fact that my disability is due to the groin LND and lymphedema.

    I have always worked a job where I was on my feet. I found a disabilty lawyer that accepted my case. Its sad because I started working when I was about 9 yrs old on my grandma’s farm. Stayed home while my kids were babies and then worked when the last one started school.

    Its sad when someone makes decisions on your future when they have no clue what you are going through. It took a full year for them to make their decision. I had even enclosed a note from my doctor that excused me from jury duty because of the lymphedema. I can’t sit or stand for very long. I was never even sent to see one of the SS doctors. Now if I win the case I have to pay 25% to get something back that should have never stopped.

    Sorry I don’t mean to go on forever, but sometimes I think its good for people to share their experiences with the system. Wow, guess I must be having a bad night.

    Hang in there with the therapy Gayla. It takes time.

    Shirley Z

    #57538
    Linny
    Participant

    This particular page has a wealth of information on leg lymphedema: http://www.lymphedemapeople.com/thesite/leg_lymphedema.htm” class=”bbcode_url”>http://www.lymphedemapeople.com/thesite/leg_lymphedema.htm

    It’s a long read but appears to be worth it.

    #57539
    GaylaB
    Participant

    Shirley,

    So glad to hear from you!

    You and I seem to be the 2 that discuss this part of it the most-

    They denied my claim, and TWO doctors both said in writing no way I could return to work- I went to the doctor yesterday- he said my medical records speak for themselves so he could not understand the denial…

    I am stopping the myofacial therapy, that seems to flair me up worse.

    They called from NE GA medical hospital and their therapist is NOW certified :D

    That means my insurance will also pay, it’s a 40 minute drive one way.

    I don’t think this is very common from the lymph node removal, to develop lymphedema, or else it would be easier to find a therapist.

    I’m praying in time it will go away – my 6 year old really needs me right now, he is in first grade and we have tons of holiday activities and it breaks my heart that I feel so bad and am so swollen but after 10 weeks past surgery, I would think if it was normal swelling from the surgery, it would have gone away by now.

    First appt at NE GA is the Monday after Thanksgiving Looking forward to it!

    Gayla

    #57540
    Shirley Z
    Participant

    Hi Gayla,

    I assume you were turned down for a private disability claim. Social Security can take 90 -120 days for approval. I also had a private 2 yr plan that I was approved for right away. They got copies of my surgery and all the doctors reports. They did actually come out to my house and interview my halfway through the 2 yr period.

    I am so glad the therapist in GA is available now. I wish you didn’t have to wait until after Thanksgiving. In the meantime, try to keep your leg elevated as much as you can. I now its hard with a 6 yr old. Avoid salt. My lymphedema is really irritated by weather changes (hope for good weather)

    I’m sure the therapy will help you its just getting it started. Lymphedema is painful and frustrating, but I have high hopes for you with the therapy.

    Hang in there Gyala!

    Shirley Z

    #57541
    GaylaB
    Participant

    My doctor sent me straight to the SS office and had me file for disability right away as he said it could take up to a year for approval-

    The amounts I was told I would receive are minimal but better than nothing.

    I have been told there are attorneys that can rush this along- that may be an option.

    It’s just hard to believe I could go from life in July as a healthy, active mother to this!

    I wish I would’ve known the risks of lymphedema BEFORE dissection, as you know my node biopsy was not conclusive to contain cancer cells- 2 doctors said no it was nevus, my main surgeon said yes, let’s dissect…

    I have been watching you tube videos of manual drainage, trying to mimic those :D

    Not doing myofacial anymore- I think that was doing more harm than good, it was just my only choice other than regular PT….

    I had it day before yesterday and yesterday and last night were horrible and swelling was extreme….but it’s a rainy day in GA today as well- not good!!

    Gayla

    #57542
    Shirley Z
    Participant

    Hi Gayla,

    Groin LND’s can really be rough. Although there are people that do fairly well with them.

    I know how frustrated you must feel right now, and you can muliply that by 100 when you are feeling the misery of the lymphedema pain. It will get better with therapy, I just wish you did not have to wait till the Monday after Thanksgiving. I’m thinking they are probably starting then so that you can get a full week in of therapy.

    Its a shame that your doctor did not go over the complications that can be caused by a groin LND. In my case I had no choice. I had matted, palpable nodes. In your case some patients are now opting to be followed with ultrasound due to the damage that can be caused by the groin LND’s.

    Hang in there Gayla. I know its easier said than done.

    Hugs,

    Shirley Z

    #57543
    Micada
    Participant

    Hi All,

    Michele here.

    I just finished 4 weeks at the Virginia Piper Cancer Center’s Lymphadema Clinic in Scottsdale. It took over 4 months to get the appointment, and I started the process back in June when I first knew that I needed to have groin lymph nodes removed. You’d think in a big area like Phoenix that you could find help but not so. On August 25th I went in for an evaluation and measurements showed that I had the equivalent of a 2 liter bottle of fluid in my right leg. i could not bend my knee the swelling was getting so bad. And the surgeon said that I had a low incidence of getting lymphadema, even though my Mom had it in both legs. I now know that it is 40-50%.

    In the meantime, I knew I had to do something and I found a massage therapist who was trained in Germany in the Vodder lymph drainage technique. She also trains other massage therapists to do this. She was able to teach me the rudiments of manual drainage and she gave me a tennis ball to roll across the groin area to kind of stimulate the lymph nodes that were left to work. She got a lot of the hardened lymph softened. I saw her once a week.

    When I started at Piper on Oct 15th, I spent 2 sessions learning to bandage, take them off and rebandage. It now takes me 10 minutes max to bandage in the morning. Then Katie started massage. She uses a PhysioMed Hivimat 200 which uses oscillating current to aid her hands in doing the softening. Then she’d put me on a pump for 15 minutes. Next time it was 30 minutes. After the first week, the measurement showed a 57% reduction! After the second week it was a 110% reduction, using my good left leg as a standard. Katie tried a different pump called a Flexitouch. It is super! It really worked well for me and the reps from the company are working with my insurance company to get me one. It’s pretty pricey – about $8,000, so I’m not sure, but we’ll see.

    In between all this, Katie taught me manual massage – sweeping up my torso with a small brush to my armpit, which is now where we are training the lymph fluid to go. Pretty marvelous because it works. She also taught me Kinesio taping which I can now do myself. Read about it. It’s special stuff that they are now using for lymphadema drainage, as well as for athletes. Only at the end of the 4 weeks did they measure me for a compression stocking and for a velcro CircaAid wrap that I can use in place of the bandages. They did not want to do that before because the size of my leg is now smaller than it would have been in the beginning and these things are expensive and often insurance does not cover them. So, they are ordered and until they are delivered and Katie sees how they fit, I am in bandages daily but i can take them off to sleep as long as the swelling does not get out of control. I’ll be at the clinic every 6 months for followup.

    Do I like it? No. Will it be forever? Yes. I’m still getting to work daily, take care of the horses and moving on with my life. Had a derm appt this am and he COULD NOT FIND ANYTHING!!! And my last PET / CT in October was clear. So, here I am with y’all.

    Shirley – ask about a pump. They have changed a lot in the past couple years, I’m told.

    Gayla – it does get better – I say that because I have cuddled a horse crying over this.

    I consider a good day when I wake up and can bend my leg and put my heel up on my left knee to do my massage.

    Please all take care of yourselves.

    Michele

    #57544
    GaylaB
    Participant

    Hi Shirley and Michelle

    I keep trying to figure out why the delay and hold ups in my situation and could it be possible that the surgeon thinks this is normal swelling due to the surgery?

    Would it last 12 weeks?

    I am sometimes holding 6 pounds of fluid in my leg….

    Also came across info on lymph node transplant- take some from my left groin to replace where there are none in my right side- anyone heard or know anyone that has done this?

    Tumeric and pineapple are my natural diuretics that I am using, but not really helping.

    Should I buy an OTC diuretic? I know I am full of questions but no one here to ask!

    Just curious if normal swelling would last 12 weeks- still cannot wear a shoe.

    Gayla

    #57545
    msue5
    Participant

    Hi Gayla

    I use a pump for my lymphedema. There is still some controversey over using the pump but my new therapist who was anti pump said she changed her mind when she started seeing more and more patients who were being prescribed pumps and the results. I feel like this was the best solution for me because I can’t bend down to my ankle for wrapping or massage due to extensive scar tissue from abd surguries.I use the pump twice a day for 45 minutes and I love it. They recently added an Abd piece to my pump because lymph fluid was getting trapped in the scar tissue from my Abd surgeries. Also my insurance covered it 100%. My pump can take my leg from hugely swollen to normal looking in 45 min. This is after an 8 hr car ride to our vacation home in S.C.. I use the time to read or listen to music so its also my meditation time! By the way they can do an MRI to tell if Lymph fluid or just swollen tissue is the cause of swelling. Are you seeing a Physiatrist (Dr of physical medicine) for this in addition to a therapist. I still see my Physiatrist every 2 mos. Hope this helps.

    Mary Sue

    #57546
    Micada
    Participant

    I read about transplanting lymph nodes but thought that it was still experimental. Just think – if you go to a pool of good lymph nodes and disturb them, then you run the risk of developing lymphedema there, too. Not sure that I would do that. I’m bad enough off the way I am.

    My doctor did not recommend a diuretic – he said they worked for edema but not for lymphadema. So, I haven’t taken any. I mostly try to eat healthy and take a bunch of supplements like ester C, calcium and vit D, multi vit, etc. Nothing particularly special. I am a type II diabetic so I just try to be careful. A lot of supplements have loads of sugar in them and that messes up my carb counting.

    Shoes? I got a pair of el cheapo Walmart MaryJanes with a velcro strap across the instep that I can adjust. I normally wear a size 7 but had to get a size 9 to go over the bandages. Well, really 2 pair, one size 7, too, but when I put the 9 on my left foot I tripped over the toe. Grrr! Even my clothes are a challenge. I can’t wear my dress slacks so I have a different colored skirt for every day. So tired of them. I just hope my wardrobe fits once I get the compression stocking. I think they ordered the heaviest weave.

    Well, time to unwind – the bandages, that is!

    Michele

    #57547
    GaylaB
    Participant

    I will certainly get the written order for a pump if you are getting relief there. I’m willing to do anything at this point.

    I cannot believe how life changing this is and the swelling is so bad, that the doctors would be so nonchalant abut it…

    I can barely function anywhere near normal- standing, walking, even sitting, I swell:(

    I will buy 2 pair of shoes in different sizes! Great idea!

    The Monday after Thanksgiving, I am hoping they can give me some idea of the severity.

    And if it can be controlled at a level where I can function- oh, the pitting is getting better, it that good or bad?

    The tightness is worse though.

    Gayla

    #57548
    msue5
    Participant

    You should definitely see a physiatrist one that specializes in lymphedema. My physiatrist was pretty aggressive and I have what he calls moderate lymphedema. I see one at National Rehab in D.C. and I would search for a large rehab hospital. They have physiatrists who all specialize in different aspects of physical therapy. The order will have to come from a MD. Hope this helps.

    Mary Sue

    #57549
    Linny
    Participant

    msue5 wrote:

    My pump can take my leg from hugely swollen to normal looking in 45 min.

    That is amazing! I didn’t realize the effects were immediate like that.

    My neighbor has leg lymphedema from having groin nodes removed 10+ years ago. Back then they weren’t as savvy as they are now about treating lymphedema so her affected leg is noticeably larger than the other one. But she gets around fine in that she can drive her car, she goes for short walks (depending on how her leg feels), and I see her outside doing gardening in the warm weather. She just recently got a new pump that has 8 chambers and she loves it. She also had knee surgery done on the affected leg 😮 and is recovering nicely. Her husband told me her leg swells more easily than it did before but she’s able to manage it. They’re not sure if it’s lymphedema or something that’s part of the healing process.

    On one of my visits to Kimmel Cancer Center at Johns Hopkins, I had a chat with one of the ladies who works in the boutique there about compression garments. She was telling me that a number of patients really liked to use quilted compression garments on their legs, especially while sleeping. Anyone here using one of those?

    This is a great thread. Thanks for starting it, Gayla.

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