Lymphedema long-term

wholfmeister
wholfmeister Member Posts: 315
in Ovarian Cancer #1

The back story: I was diagnosed in March 2012 with stage 3c, started chemo right away, and had "optimal" debulking in June 2012.  I have been on chemo ever since, with a progression of different chemo drugs.  They all seem to work for a time, and then the CA125 starts going back up and scans show tumor progression.  For three years I have had minimal problems except general fatigue.  (Except for Doxil, which nearly killed me for 6 weeks, but that is another story!)

Recent developments: In January 2015, I stopped Topotecan because my CA125 was up to 226 and the scan showed more progression.  In fact I had a Ureteral stent placed in Feb for hydronephrosis, as a tumor was collapsing the ureter.  It is not comfortable.  I feel the urge to urinate CONSTANTLY and I experience bladder spasms every time I do urinate.  in the meantime, we have been arguing with the insurance company about what to do next, so I had no chemo for two months.  And my CA125 is 460! (Don't forget, the cancer was growing, even with the chemo.)

During the hiatus, I have developed swelling in my right leg, from the groin down to the toes.  I was checked for blood clots, and the blood circulation is fine.  It is not particularly painful, but it feels very tight, especially at the ankle and knee. And very heavy.  It is about 50% larger than the left leg. My appointment with the lymph edema specialist isn't for two more weeks.

What do you think?  There isn't much on this board about lymphedema.  Anyone experience this? It seems weird, so long after my surgery.  I just don't know what to expect and would love to hear from others who've dealt with this.

I was very spoiled for nearly three years with so few problems!

Comments

  • Lisa 00
    Lisa 00 Member Posts: 134 Member
    #2
    lymphedema

    Hello,

    I have had a small amount of lymphedema in my rt leg which originated from a sub-par angiogram.  I found that there are local practitioners, non-medical, who do lymphatic drainage work.  They massage the whole body and it does work for a while to the tune of 80-100$ per session.  Aside from this, keeping the leg elevated can help.  Position the foot above your hip while sitting.  My lymphedema worker told me to massage the stomach area pretty well and breathe out to the point that you contract the diaphragm like 5 times (massage, deep breath, exhale, masage, deep breath, exhale, repeat).  There is lymphatic drainage that is stimulated by doing this, and it will translate into hopefully draining the leg some.  You know, exhale all the way, then bear down at the diaphragm exhaling the last bit. 

    My lymph lady tells me that physicians know very little about the lymphatic system and even less about draining therapies.  I would seek help from a local lymphatic practitioner.  I don't know if any of them are considered to be part of anything that's covered via traditional medical insurance.  I have a good idea how uncomfortable you must be with the leg and I wish you all the best in your journey.

    Lisa

  • NoTimeForCancer
    NoTimeForCancer Member Posts: 3,486 Member
    #3
    Lisa 00 said:

    lymphedema

    Hello,

    I have had a small amount of lymphedema in my rt leg which originated from a sub-par angiogram.  I found that there are local practitioners, non-medical, who do lymphatic drainage work.  They massage the whole body and it does work for a while to the tune of 80-100$ per session.  Aside from this, keeping the leg elevated can help.  Position the foot above your hip while sitting.  My lymphedema worker told me to massage the stomach area pretty well and breathe out to the point that you contract the diaphragm like 5 times (massage, deep breath, exhale, masage, deep breath, exhale, repeat).  There is lymphatic drainage that is stimulated by doing this, and it will translate into hopefully draining the leg some.  You know, exhale all the way, then bear down at the diaphragm exhaling the last bit. 

    My lymph lady tells me that physicians know very little about the lymphatic system and even less about draining therapies.  I would seek help from a local lymphatic practitioner.  I don't know if any of them are considered to be part of anything that's covered via traditional medical insurance.  I have a good idea how uncomfortable you must be with the leg and I wish you all the best in your journey.

    Lisa

    Yes!!!  I remember visiting

    Yes!!!  I remember visiting with my physical therapist who specialized in lymphedemia patients.  She said that you start with massaging your stomach area and groin area.  Pressing on it will get the "lymph nodes ready to receive the fluid".  THEN very gently in small circles working from your ankle up your leg to move the fluid.  She even offered to teach someone I know so they could help do it to me.  As you can imagine, it is kind of hard to do this on yourself.  The "massage" was such a light, gentle touch I was surprised.  She wrapped it after she massaged it, because she wasn't wrapping it too tight it stayed on ALL THE TIME until I saw her again (bathing was a challenge) but once I got the compression garments those had to come off at night.

     

  • MrCLINY
    MrCLINY Member Posts: 10
    #4
    lymphedema

    Ok my wife has had lymphedema for awhile now. Our insurance paid for her to go to a center which specializes in treating it. After a number of treatments she now does most of the work herself. Each night she must wrap her leg ( right one ) with a number ( 6 ) of different sized elastic bandages plus a number of cotton under bandages. This she sleeps with. In he morning she removes them and does excerizes and for during the day puts on a special support stocking. Her lig while not back to normal has been reduced alomost to normal.

    Now there is a surgery that will move a lymph node from one place to the leg. My wife after reading about the side effects is not infavor of doing it at this time.

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