• Does anyone have to deal with Lymphedema?

    Asked by charr on Friday, June 20, 2014

    Does anyone have to deal with Lymphedema?

    16 Answers from the Community

    16 answers
    • Debdawn64's Avatar
      Debdawn64

      I have it mildly. I go to a massage therapist and get my arm drained of the congestion a couple times a month. I do the personal massage told to me by a lymphedema specialist when I'm in the shower to keep it drained. I also do the exercises given to me, almost daily. When I travel, I always wear my sleeve! Hope this helps, good luck!

      about 6 years ago
    • dxdiva2's Avatar
      dxdiva2

      I also had a mild bout of it which may have been triggered by a really tight tourniquet for a blood draw. I went to an OT for the manual massage. The OT also assessed by range of motion, found it limited so she gave me exercises for both the lymphodema and flexibility. I had three weeks of treatment. Amazing how low tech but effective it was. The OT gave me info/measurements for sleeves and said I needed to wear them when I fly more than a couple of hours.

      about 6 years ago
    • Irenes' Avatar
      Irenes

      Lymphedema set in about a month after I finished radiation. I was exercising daily to keep mobility but the fluid built up so that I had a frozen shoulder. I was fitted for a sleeve and gauntlet which I wore daily and began both PT. And lymphedema massage therapy. I was able to see both therapists at the same clinic. Lymphedema therapists are sometimes difficult to find. I had PT for eight weeks, twice a week and LMT for 7 weeks twice a week.. It has been 3 months since I finished therapy. I do the exercises every day to keep mobility and I self massage every evening before bedtime for the lymphedema. I would like to have LMT once a month now but the closest therapist is 4 hours away. It has been a year since my surgery . I am hoping that the exercises and massage will keep the arm in good shape along with the sleeve and gauntlet. Get advice from your doctor about the lymphedema. There is also good info from the Canadian Cancer Agency as well as the American Cancer agency on the net.

      about 6 years ago
    • Yvette0516's Avatar
      Yvette0516

      I have not had my lymph nodes removed yet, so no lymphedema thus far, however, in my research and studies, because eventually my lymphs will be taken, I noticed that there is a wealth of information about the condition. I did a basic search on google, as well as in the Kaiser website so that I could understand what is to come for me. I just wanted you to know that if you search it, to look at available info on the more reputable sites, so you can compare notes and get a little more information geared to your exact symptoms - - as we do know that each side effect, condition, ailment, permanent side effect, etc.... is different for everyone, with similarities of course. I am praying for you that you will be able to get to a different comfort level, that will not overwhelm - - as I understand that it is just one more thing for you to have to deal with. Take care of you. Sincerely

      about 6 years ago
    • smishik's Avatar
      smishik

      I developed Lymphedema 6 months after my surgery. I went to see therapist for 10 sessions. That is all my insurance would cover. She taught me how to massage and which exercises to do. I was told to wear the sleeve all the time. I wear it all the time except when I wash them and when I shower and wash my hair. I have a night sleeve I wear at night. It is debilitating but I guess it was meant to be. We are just 1 or the 20%. According to what I read only 20% of breast cancer patients get Lymphedema. So Yvette0516, you may not get it. Just make sure you be very careful with that side. Let nothing bump it or get hurt in any way. That is what sets it off.

      about 6 years ago
    • Yvette0516's Avatar
      Yvette0516

      Oh smishik, I hope you're right! In my research about lymph node removal, it was talking about how most people with removal (and for me other medical conditions where I retain water horribly) end up with lymphedema - - so I assumed. I agree with you, I shouldn't assume. :) Your post gives me hope. Thank you. :)

      about 6 years ago
    • Peggie's Avatar
      Peggie

      Yes, charr!!! I am three weeks after my 6th and final round of taxotere/cytoxan chemo. Swelling started after my fourth round and just got progressively worse. Both my arms are swollen from the fingers up. My upper forearm, just before the elbow, and the lower upper arm, just before the elbow are especially swollen - hard and dimpling. My legs get swollen within minutes of waking (I sleep with my legs elevated) and if I move around during the day, the ankles and calves are grotesquely engorged. I have seen my onco and he tells me it is the taxotere. I am going to start physio soon and will probably have to wear the sleeves and socks round the clock. My onco has also startede on Lasix 20 mg 2xs a day for a week and 20 mg once a day for the next week. 'Give it 6 months', my onco said. I am about to start working again but I am not sure how I will fare through the work day. Fatigue, altered taste, diarrheoa also plague me daily. But all said, I am glad I finished my chemo and doing okay otherwise. Hope you see your onco and get your lymphedema looked at and treated. Hugs...

      about 6 years ago
    • jojo2's Avatar
      jojo2

      I have done some things on my own, during the 3 years I've had lymphedema. I brought my own sleeves (on clearance) at Brightlifedirect. They are by Juzo and only 20-30 mmhg of compression. I also got them larger than I need, on the premise that different amts of compression every other day would help the skin to be more elastic. I would have to tear the one they prescribed for me off suddenly because I couldn't stand it anymore, it was so tight. As my arm stayed basically the same size as the other, I experimented with Kinesio Tex Gold tape and I used that about 4 months before going sleeveless during the day. If it swells up I wear my sleeves for a few days. I do wear my night garment from Solaria: Caresia (wrist to axilla) religiously. It is called a bandage liner but I use it alone. It is a quilted arm sleeve and I use a Swell Spot at the top of my arm as the top of the night sleeve stretches over time and this makes the compression adequate. This was ordered by my PT. I am down to using only the night garment and occasionally if I lift too much (moving,etc) I wear my sleeves until I'm back to my baseline. My therapist thought my ideas were OK. I'm a nurse and use supplements too. I was not satisfied with the treatment choices (30-40mmhg pressure compression sleeve only) presented for this ongoing problem and am satisfied with the night garment only. I've heard good things about the Reid sleeve too. Good luck

      about 6 years ago
    • MLT's Avatar
      MLT

      Yes, mine started during chemo. I got massages from an OT and learned how to wrap my arm. Dr said it probably weighed 10 lbs. The chevron wrap worked miracles. I advanced to wearing a sleeve. Stress and increase in physical activity made it worse for awhile. I have a compression pump I used all the time for awhile and a nighttime sleeve that works great. It is pretty much under control now. I've had mastectomy and reconstruction with no problems since then. You just have to catch it right away and be vigilant with massages, etc. Call Dr if you have any swelling.

      about 6 years ago
    • MelanieIIB's Avatar
      MelanieIIB

      I have mild lymphedema in my hand, arm and on my side. Mine began after surgery (I had 18 lymph nodes removed). I could not straighten out my arm (up, down or to the side) and I had what looked like a cord that ran all the way from under my arm to my wrist. I showed it to the Breast Cancer Nurse Navigator and she told me I had "cording" and I needed my surgeon to refer me to a Lymphedema Therapist. The therapist worked with my arm and taught me about moving the lymph manually and fitted me with a compression sleeve and glove. After several sessions of therapy with her and exercises she told me to do, I was finally able to get back full range of motion, however my arm always hurts when I lift it straight up, but at least I am able to lift it that high.

      I am having a lot of discomfort in my trunk again. I try moving the lymph manually but it is not helping. Unfortunately, the lymphedema therapist I had been seeing, is no longer working. I have been unable to find another one.

      MLT....what kind of reconstruction did you have, if you don't mind my asking? I am considering diep flap reconstruction and am afraid of the lymphedema on my side getting worse from the procedure.

      about 6 years ago
    • Merle's Avatar
      Merle

      So far so good.
      I'm being proactive. I get a massage by an oncology massage therapist.
      My radiation oncologist told me that I have to massage the breast, underarm, and side for 2 minutes every day for the rest of my life. It is done so that you break up scar tissue.
      Because of tightness I went back to doing the 'exercises after breast surgery' that I was told to do right after surgery. I only had to do them for a few weeks. I thought if stretching helps why not continue.
      I start yoga next week. I have been told by multiple doctors yoga is great for those with breast cancer. In my area there are even yoga classes for survivors.

      about 6 years ago
    • Debdawn64's Avatar
      Debdawn64

      I am curious about this night sleeve? I haven't seen one anywhere? I might try to find one, or do you just use a regular sleeve and wear it at night? Do you swell more at night? I'm also wondering about lymphedema and reconstruction, I'm scheduled for my reconstruction in Nov. I am having the diep flap as well.

      about 6 years ago
    • MelanieIIB's Avatar
      MelanieIIB

      Debdawn64, the lymphedema therapist told me not to wear the regular compression sleeve at night. She did tell me one sleeve that is safe to wear at night, it is called Solidea compression sleeve. If you google the name, you will see lots of places to get it, even Amazon. I do swell more at night, depending on what I have done during the day. Even though I wear my compression sleeve and glove for repetitive motions, if I've been very active, I will swell more.

      about 6 years ago
    • MLT's Avatar
      MLT

      I have a Tribute Nighttime sleeve. It is quilted in such a fashion to massage the arm. Mine goes from shoulder to fingertips and I can bend my arm somewhat with it on. REALLY helps! I think it is made by Solaris. It is made to your measurements. I was told to not wear the compression sleeve at night. Rarely wear anything right now, just as needed.

      I had the DIEP reconstruction last Nov. No changes with Lymphedema. The PS said sometimes it helps and I had read that, too. Very happy with my breasts, but I was left with an abdominal bulge due to tissue not being pulled tight enough. Will take another surgery to fix it. Scheduled for Nov, but getting ovaries out on Weds. Will see how that surgery goes first. I had never heard anything about this happening and can't find much info about it. Something you might want to ask about. Doesn't happen often. Wishing everyone the best with surgeries and Lymphedema.

      about 6 years ago
    • dxdiva2's Avatar
      dxdiva2

      I was also told not to wear the compression sleeves at night. You should definitely look into this in case they failed to tell you this in error. I know I was not told to go off Premarin cream and realized on my own that this might not be right. Sure enough, it was an oversight on the doctor's part.

      about 6 years ago
    • grandmajean5's Avatar
      grandmajean5

      I'm afraid to jinx myself but I have been fortunate and have not experienced it yet. I had two lumpectomies on the left breast in November 2012 and 23 lymph nodes removed. I didn't have chemo but 33 rounds of radiation. I make sure blood pressure and blood draws are only done on the right side. I keep waiting for it to happen, but I keep hoping it won't.

      about 6 years ago

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