lymphedema

jane65
jane65 Member Posts: 277
edited March 2014 in Ovarian Cancer #1
For a long time, my right leg has been swollen from the ankle to the knee. My oncologist said it was the cancerous lymph nodes not allowing the lymph system to drain properly. He recommended that I wear a compression stocking, and keep my legs elevated as much as possible.

I'm still recovering from the hernia surgery, but I noticed that the right thigh is now also swollen and not soft in places.

I'll call him, but I was wondering if anyone has had lymphedema and what was the treatment.

It's always something!

gentle {{{hugs}}} to all.
Jane

Comments

  • mopar
    mopar Member Posts: 1,972 Member
    #2
    ME TOO
    Hi, Jane;

    The lymphodema that I have in my left leg at the ankle is, according to my doctor, from multiple pelvic/abdominal surgeries and the removal of so many lymph nodes. My first surgery in 2000, the second in 2006. When I was on a vigorous weight training program and super diet, I noticed the swelling went all the way down. So, I agree that it has much to do with fewer lymph nodes taking on the extra work. Your doctor may also have a point, too.

    Drinking lots of fluids, believe it or not, will actually help your body to minimize fluid retention. Daily exercise (I know, some days I don't feel like it either) helps. Cruciferous veges (broccoli, cabbage, etc.) are also helpful. Don't forget sufficient rest. And elevating your legs once a day can also help to drain it through your system.

    A very good exercise and SUPERIOR way to cleanse the lympatic system is to use a mini trampoline, also known as a rebounder. Done every couple of hours, at a light bounce, moves fluids through the body and lymphatic system. Just drink lots of water afterward to flush it out of your body.

    Hope this helps! Let us know if it does!

    (((HUGS)))
    Monika
  • BonnieR
    BonnieR Member Posts: 1,526 Member
    #3
    lymphodema
    Dear Jane, sorry to hear of your latest problem with the swelling. I am surprised he doesn't send you to a pt that can teach you how to work the fluid out of your leg. If it doesn't stop ask about it. They are physical therapist drained in lymphodema. Hugs n Prayers Bonnie
  • bluerose
    bluerose Member Posts: 1,104
    #4
    BonnieR said:

    lymphodema
    Dear Jane, sorry to hear of your latest problem with the swelling. I am surprised he doesn't send you to a pt that can teach you how to work the fluid out of your leg. If it doesn't stop ask about it. They are physical therapist drained in lymphodema. Hugs n Prayers Bonnie

    Bonnie is right Jane
    I have lymphodema too and Bonnie is right you need a PT to help you with it. I had one and she was great. Ask your doctor for a referral and sometimes they can come right to your home if the doc prescribes it, that's how it works here anywho. Hope you can get some relief soon. Hugs, Bluerose
  • jane65
    jane65 Member Posts: 277
    #5
    mopar said:

    ME TOO
    Hi, Jane;

    The lymphodema that I have in my left leg at the ankle is, according to my doctor, from multiple pelvic/abdominal surgeries and the removal of so many lymph nodes. My first surgery in 2000, the second in 2006. When I was on a vigorous weight training program and super diet, I noticed the swelling went all the way down. So, I agree that it has much to do with fewer lymph nodes taking on the extra work. Your doctor may also have a point, too.

    Drinking lots of fluids, believe it or not, will actually help your body to minimize fluid retention. Daily exercise (I know, some days I don't feel like it either) helps. Cruciferous veges (broccoli, cabbage, etc.) are also helpful. Don't forget sufficient rest. And elevating your legs once a day can also help to drain it through your system.

    A very good exercise and SUPERIOR way to cleanse the lympatic system is to use a mini trampoline, also known as a rebounder. Done every couple of hours, at a light bounce, moves fluids through the body and lymphatic system. Just drink lots of water afterward to flush it out of your body.

    Hope this helps! Let us know if it does!

    (((HUGS)))
    Monika

    Thanks Monika,
    All your suggestions sound like good advice, except for the trampoline.
    My balance isn't very good to begin with, but I appreciate your other suggestions.
    Jane
  • jane65
    jane65 Member Posts: 277
    #6
    BonnieR said:

    lymphodema
    Dear Jane, sorry to hear of your latest problem with the swelling. I am surprised he doesn't send you to a pt that can teach you how to work the fluid out of your leg. If it doesn't stop ask about it. They are physical therapist drained in lymphodema. Hugs n Prayers Bonnie

    Hi Bonnie,
    I've had the foot to knee swelling for about a year, and it's always gone down overnight.
    This is new and I haven't spoken with my oncologist since my surgery. I'm seeing his associate next week for a port flush and I'll show him my leg and get his input then.

    It's also gone down when I'm on chemo, the lymph nodes shrink then also.

    Thanks for your suggestion, I hear PT is definitely the way to go.
    {{{hugs}}} and good health to you.
    Jane
  • jane65
    jane65 Member Posts: 277
    #7
    bluerose said:

    Bonnie is right Jane
    I have lymphodema too and Bonnie is right you need a PT to help you with it. I had one and she was great. Ask your doctor for a referral and sometimes they can come right to your home if the doc prescribes it, that's how it works here anywho. Hope you can get some relief soon. Hugs, Bluerose

    Bluerose
    Hi Bluerose,
    My niece also suggested that I try for someone trained in the procedure to come to the house. I'll definitely discuss it with my doctor's associate next week.
    I didn't know you have lymphedema, are your lymph nodes involved in your disease?

    Feel well,
    Jane
  • bluerose
    bluerose Member Posts: 1,104
    #8
    jane65 said:

    Bluerose
    Hi Bluerose,
    My niece also suggested that I try for someone trained in the procedure to come to the house. I'll definitely discuss it with my doctor's associate next week.
    I didn't know you have lymphedema, are your lymph nodes involved in your disease?

    Feel well,
    Jane

    Yup Jane they are/were
    I had non hodgkins lymphoma Jane so that's where the cancer shows up. I just came into Ovarian Cancer when they found that cyse and node on my ovary - worried about a second cancer - don't know if you knew that.

    Oh ya I found my first lump on the inside of my left leg in 1989 and on biopsy it turned out to be NHL in that lymph node so they took it out. Once they take out a lymph node or more then the lymph backs up or reroutes and that usually causes a lymphodema (edema) situation. My left leg and ankle are always bigger than my right but not by much, some have it much worse than I do. It does affect me though with numbing my left foot 24/7 but then again they think I have nerve damage too from the bone marrow transplant I have so it's a double whammy for me there - the fun never ends, sheeesh, lol.

    I have had all the treatments I think there are for lymphadema but like I said it isn't a super bad case of it, the least of my issues really.

    Hugs, Jane
  • bluerose
    bluerose Member Posts: 1,104
    #9
    jane65 said:

    Hi Bonnie,
    I've had the foot to knee swelling for about a year, and it's always gone down overnight.
    This is new and I haven't spoken with my oncologist since my surgery. I'm seeing his associate next week for a port flush and I'll show him my leg and get his input then.

    It's also gone down when I'm on chemo, the lymph nodes shrink then also.

    Thanks for your suggestion, I hear PT is definitely the way to go.
    {{{hugs}}} and good health to you.
    Jane

    One more thing Jane
    I was reading your response to Bonnie and something stood out to me. You mentioned that the new swelling is NEW. ALWAYS bring up any new symptoms with your doctor, you probably already know this, but when you have multiple health situations and symptoms for a long time many get sloppy with reporting little new things and that can be a mistake. Get a liitle book and write down new symptoms or questions you might want to ask the doctor and when you go in you won't forget anything. Of course if the new symptom is severe you need to call the doc and see him/her right away but over the years I have done this recording of symptoms and questions and it works for me.

    Take care of that new symptom - it probably nothing big but you have to get that checked out sooner rather than later. I'll shut up now. lol. Blessings, Bluerose
  • carol2dogs
    carol2dogs Member Posts: 132
    #10
    Lymphedema - Please see a PT
    Jane,
    I am currently being treated by a Physical Therapist for Lymphedema. By the way, I do not believe it is just a coincidence that we are both on gem/cis. Anyway,my leg had been swelling but going down nightly for months, and then suddenly got much worse and did not go down. My doc and PA recommended PT. I am in my second week of getting my leg wrapped 3 times weekly (bandages stay on between treatments), and my foot and lower leg are already either at or near their normal size. You learn how to do the manual draining massage yourself, as well as wrap the bandages yourself. Logistically, it is inconvenient - you need a shoe at least 2 sizes bigger for that leg and showers are pretty much out. However, it is so very worth it!! I will be happy to answer any and all questions you may have about this. You do need to know that this is very much fee for service - they expect the co-pays to be paid weekly.
    Please don't let it continue to get worse - you can get sores and skin infections.
    Thanks. Love and hugs, Carol.
  • jane65
    jane65 Member Posts: 277
    #11
    carol2dogs said:

    Lymphedema - Please see a PT
    Jane,
    I am currently being treated by a Physical Therapist for Lymphedema. By the way, I do not believe it is just a coincidence that we are both on gem/cis. Anyway,my leg had been swelling but going down nightly for months, and then suddenly got much worse and did not go down. My doc and PA recommended PT. I am in my second week of getting my leg wrapped 3 times weekly (bandages stay on between treatments), and my foot and lower leg are already either at or near their normal size. You learn how to do the manual draining massage yourself, as well as wrap the bandages yourself. Logistically, it is inconvenient - you need a shoe at least 2 sizes bigger for that leg and showers are pretty much out. However, it is so very worth it!! I will be happy to answer any and all questions you may have about this. You do need to know that this is very much fee for service - they expect the co-pays to be paid weekly.
    Please don't let it continue to get worse - you can get sores and skin infections.
    Thanks. Love and hugs, Carol.

    Carol
    Hi Carol,
    I'm not on chemo at this time, after I heal from the double hernia surgery we're doing a CT scan and then deciding which chemo will be next.
    I know the pelvic lymph nodes are growing because they showed up on the last CT, the CA is also going up steadily.

    I appreciate the info. about the lymphedema treatment. The more information I can gather, the better informed I'll be the next time I see the oncologist.

    It sounds unpleasant from your description, but important to prevent future problems.

    How are you feeling, I hope the chemo is doing well for you.

    Love and hugs back to you,
    Jane
  • jane65
    jane65 Member Posts: 277
    #12
    bluerose said:

    One more thing Jane
    I was reading your response to Bonnie and something stood out to me. You mentioned that the new swelling is NEW. ALWAYS bring up any new symptoms with your doctor, you probably already know this, but when you have multiple health situations and symptoms for a long time many get sloppy with reporting little new things and that can be a mistake. Get a liitle book and write down new symptoms or questions you might want to ask the doctor and when you go in you won't forget anything. Of course if the new symptom is severe you need to call the doc and see him/her right away but over the years I have done this recording of symptoms and questions and it works for me.

    Take care of that new symptom - it probably nothing big but you have to get that checked out sooner rather than later. I'll shut up now. lol. Blessings, Bluerose

    bluerose
    Hi again,
    I know that I'm probably such a pest with my oncologist, always going in with a list of questions and new things to discuss.

    I appreciate your suggestions, please don't ever shut up! I really am glad that you take the time to write.

    Jane

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