Lymphadema - ankle swelling

lemonade
lemonade Member Posts: 63
edited March 2014 in Anal Cancer #1
I finished the standard chemo/rad on October 6, 2009. I have started experiencing swollen ankles on a daily basis since the end of April - six months post treatment. I was staged IIIB with left lymph node involvement. My oncologist said it is due to damage from either the chemo or the radiation. I am currently NED.

I have an appointment to go to a lymphadema clinic next week. I was surprised to find out that I have to have a prescription for #30 compression socks. I'm sure they will get me outfitted next week.

Anyway - any tips on this from anyone????

Barbara
«1

Comments

  • lemonade
    lemonade Member Posts: 63
    #2
    Ankle Swelling
    I realize that RIP has kept everyone busy, but is anyone experiencing lymphadema? And, if so, how are you treating it.

    Thanks everybody.

    Barbara
  • JDuke
    JDuke Member Posts: 438
    #3
    lemonade said:

    Ankle Swelling
    I realize that RIP has kept everyone busy, but is anyone experiencing lymphadema? And, if so, how are you treating it.

    Thanks everybody.

    Barbara

    Barbara
    I have not experienced any ankle swelling. Hopefully someone else will chime in with their comments soon.

    Joanne
  • z
    z Member Posts: 1,414 Member
    #4
    lemonade said:

    Ankle Swelling
    I realize that RIP has kept everyone busy, but is anyone experiencing lymphadema? And, if so, how are you treating it.

    Thanks everybody.

    Barbara

    Barbara
    Hi Barbara,

    I have never experienced lymphadema. The last onco visit he felt my ankles and asked if I ever had swelling, and I told him no. I should have asked him why he did that but I guess since I've not experienced that I didn't. Sorry I am unable to help. Lori
  • lizdeli
    lizdeli Member Posts: 569 Member
    #5
    z said:

    Barbara
    Hi Barbara,

    I have never experienced lymphadema. The last onco visit he felt my ankles and asked if I ever had swelling, and I told him no. I should have asked him why he did that but I guess since I've not experienced that I didn't. Sorry I am unable to help. Lori

    Lymphadema
    I haven't experienced it in my ankles, but I definetely have something going on in my right upper thigh, which may be some version of lymphadema. Dull constant ache, comes and goes days at a time.

    Liz
  • mp327
    mp327 Member Posts: 4,440 Member
    #6
    Lymphadema
    Hi Barbara--

    I have not experienced this side effect either, so may be of little help to you. However, I do know that some people have gotten relief from this with physical therapy. Perhaps you may want to ask your doctor about that. It's possible that some type of therapy will be part of your treatment at the specialty clinic you are going to next week. I do hope you will get some effective results and hope you will let us know.
  • duckyann
    duckyann Member Posts: 159
    #7
    mp327 said:

    Lymphadema
    Hi Barbara--

    I have not experienced this side effect either, so may be of little help to you. However, I do know that some people have gotten relief from this with physical therapy. Perhaps you may want to ask your doctor about that. It's possible that some type of therapy will be part of your treatment at the specialty clinic you are going to next week. I do hope you will get some effective results and hope you will let us know.

    Hi Barbara,
    I have a friend
    Hi Barbara,

    I have a friend who had anal cancer like us and she has been experiencing lymphadema for I think about a year now. She is a little over 2 years out. She has swelling from her thighs down through her feet. I know that she goes in weekly to get "wraps" on her legs. I don't know what kind of doctor does this. She told me the purpose of it was to try and push the fluid up and out of her body. I don't know how much help this info is (because it isn't much)but at least it lets you know there are others. She also takes medication that starts with a "N" for the pain. If you want I can ask her and let you know.

    Nancy
  • pjjenkins
    pjjenkins Member Posts: 173
    #8
    lizdeli said:

    Lymphadema
    I haven't experienced it in my ankles, but I definetely have something going on in my right upper thigh, which may be some version of lymphadema. Dull constant ache, comes and goes days at a time.

    Liz

    dull ache in right upper thigh and hip
    I have this- started about 1 1/4 years after treatment. Cannot sleep long on right side for aching too much. Now nearly a year later is happening on left side also. Have not gotten docs interested yet.

    I have arthritis also but this is, imho, not related to that.

    Until this past month, I have had no ankle swelling but I have started to notice some minor swelling of my left ankle. I still think this may be age related.

    Priscilla
  • mp327
    mp327 Member Posts: 4,440 Member
    #9
    pjjenkins said:

    dull ache in right upper thigh and hip
    I have this- started about 1 1/4 years after treatment. Cannot sleep long on right side for aching too much. Now nearly a year later is happening on left side also. Have not gotten docs interested yet.

    I have arthritis also but this is, imho, not related to that.

    Until this past month, I have had no ankle swelling but I have started to notice some minor swelling of my left ankle. I still think this may be age related.

    Priscilla

    Hi Priscilla
    I often have hip and upper thigh pain as well and really think it is due to the radiation. It's hard to tell if it's joint pain, bone pain or muscle pain sometimes. I'm sorry you are having to deal with this, but it seems to be common after our treatment. Have you had a bone density test to assess the strength of your bones? Radiation can be very damaging to the bones. I'm beginning to realize that the doctors sometimes don't believe that we can have all these lingering side effects.
  • cbs6931
    cbs6931 Member Posts: 63
    #10
    Barbara - Found this and thought there might be helpful info...

    This is the URL for the National Lymphedema network - there look to be

    http://www.lymphnet.org/

    Did a search under FAQs for swollen feet and this link will give you the results.

    http://www.lymphnet.org/lymphedemaFAQs/questionCornerResults.php?search_term=swollen+feet

    I haven't looked at any of this in detail, but hope some of it may help you. Looks like they have discussion boards too.

    I'm sorry you have run into this - I haven't yet, but am only out of treatment for a couple of months now, so who knows what the future holds.

    Hope your feet are better soon,

    Cathy
  • pjjenkins
    pjjenkins Member Posts: 173
    #11
    mp327 said:

    Hi Priscilla
    I often have hip and upper thigh pain as well and really think it is due to the radiation. It's hard to tell if it's joint pain, bone pain or muscle pain sometimes. I'm sorry you are having to deal with this, but it seems to be common after our treatment. Have you had a bone density test to assess the strength of your bones? Radiation can be very damaging to the bones. I'm beginning to realize that the doctors sometimes don't believe that we can have all these lingering side effects.

    hard to tell if it's joint pain, bone pain or muscle pain
    Bingo! Right on! You've hit the nail on the head! It is hard to tell....

    I had a bone density scan just a few years back (maybe 4?) but not since I had cancer. Bones were fine then. Maybe I will ask my rad onc in Sept at my next appt.

    I had xrays which show severe arthritis in my lower spine and both knees though only my right knee bothers me and the hips were fine! But the hips and right knee are what bother me!

    I don't know how the docs determine the source of pain. With the obvious arthritis, I have had physical therapy to regain strength in the leg I favored for a year before complaining. It has made it possible for me to climb stairs gingerly but normally sometimes. I often revert to only lifting my body weight with my left leg when my right hurts too much or feels too weak. I have been reluctant to think this is radiation related but it appears it might be. Docs dismissed my suggestion of neuropathy as the location is wrong.

    Thanks for your post!
    Priscilla
  • pjjenkins
    pjjenkins Member Posts: 173
    #12
    mp327 said:

    Hi Priscilla
    I often have hip and upper thigh pain as well and really think it is due to the radiation. It's hard to tell if it's joint pain, bone pain or muscle pain sometimes. I'm sorry you are having to deal with this, but it seems to be common after our treatment. Have you had a bone density test to assess the strength of your bones? Radiation can be very damaging to the bones. I'm beginning to realize that the doctors sometimes don't believe that we can have all these lingering side effects.

    meant to mention
    also that the pain sometimes is when you press on it- the thigh and/or the outside of the hip. This improved a bit with icing (that is rubbing with ice - not the sugary stuff :} )
    which the physical therapist suggested in case it was bursitis. Maybe it is/was bursitis? The achiness when I lie on my right side starts within 5 minutes of resting and now, maybe 8-10 months later, is starting to happen the same way. Anyway, I have discovered I can again sleep on my stomach- something I couldn't do since early in radiation treatment!

    Sorry - starting to ramble. Hope you are all quite well!
    Priscilla
  • mp327
    mp327 Member Posts: 4,440 Member
    #13
    pjjenkins said:

    meant to mention
    also that the pain sometimes is when you press on it- the thigh and/or the outside of the hip. This improved a bit with icing (that is rubbing with ice - not the sugary stuff :} )
    which the physical therapist suggested in case it was bursitis. Maybe it is/was bursitis? The achiness when I lie on my right side starts within 5 minutes of resting and now, maybe 8-10 months later, is starting to happen the same way. Anyway, I have discovered I can again sleep on my stomach- something I couldn't do since early in radiation treatment!

    Sorry - starting to ramble. Hope you are all quite well!
    Priscilla

    Bone density scan
    Priscilla, I would definitely ask about getting the bone density, especially since you had a previous one to which it can be compared. I have a hard time sleeping on my sides these days, as it makes my hips hurt. I also have numbness in my butt when I sit too long. I never had to deal with any of these things until I had the radiation. :(
  • lemonade
    lemonade Member Posts: 63
    #14
    cbs6931 said:

    Barbara - Found this and thought there might be helpful info...

    This is the URL for the National Lymphedema network - there look to be

    http://www.lymphnet.org/

    Did a search under FAQs for swollen feet and this link will give you the results.

    http://www.lymphnet.org/lymphedemaFAQs/questionCornerResults.php?search_term=swollen+feet

    I haven't looked at any of this in detail, but hope some of it may help you. Looks like they have discussion boards too.

    I'm sorry you have run into this - I haven't yet, but am only out of treatment for a couple of months now, so who knows what the future holds.

    Hope your feet are better soon,

    Cathy

    Lymphadema Appt.
    Well, I went to the Lymphadema and Wound Care Institute yesterday here in Houston. I was expecting to get maybe a lymphatic drainage massage and some compression socks. That's not exactly what happened.

    It was a 2 hour appointment. They took general medical history. Put me on a breathing machine for 10 minutes. Marked, measured and photographed my legs. I spoke with an M.D. They did a doppler (ultrasound) to check my legs for blood clots. Then, they put me in a recliner and put each leg in a "garment" (type of sleeve for my legs) and hooked them up to a pump. The pump inflates and deflates chambers in the garment to move the lymphatic fluid out of the areas where the lymph nodes don't work properly anymore. They told me that my lymphatic system was permanently damaged due to the radiation and chemo.

    Then I really got the "deer in the headlights look" when they told me that this was MY pump and I would have to do this for the rest of my life. That was a shocker yesterday.

    The treatment program is 6 weeks and then you go into a maintenance program after that. I have to use the pump on my legs for 2 hours each day. I'm not sure long term what the maintenance program will be. I have 5 appointments next week and then 3 the week after that.

    This swelling has been going on for about 2 months. It has not disfigured my ankles because I caught it early. The lymphatic system carries proteins and if they are not circulated properly, it causes the skin to disfigure. Apparently, this is fairly common with breast cancer patients.

    This is just a heads up for anyone who has swelling that won't go away.

    The pump does work because after just one day I can see a difference in my ankles.

    Barbara
  • mp327
    mp327 Member Posts: 4,440 Member
    #15
    lemonade said:

    Lymphadema Appt.
    Well, I went to the Lymphadema and Wound Care Institute yesterday here in Houston. I was expecting to get maybe a lymphatic drainage massage and some compression socks. That's not exactly what happened.

    It was a 2 hour appointment. They took general medical history. Put me on a breathing machine for 10 minutes. Marked, measured and photographed my legs. I spoke with an M.D. They did a doppler (ultrasound) to check my legs for blood clots. Then, they put me in a recliner and put each leg in a "garment" (type of sleeve for my legs) and hooked them up to a pump. The pump inflates and deflates chambers in the garment to move the lymphatic fluid out of the areas where the lymph nodes don't work properly anymore. They told me that my lymphatic system was permanently damaged due to the radiation and chemo.

    Then I really got the "deer in the headlights look" when they told me that this was MY pump and I would have to do this for the rest of my life. That was a shocker yesterday.

    The treatment program is 6 weeks and then you go into a maintenance program after that. I have to use the pump on my legs for 2 hours each day. I'm not sure long term what the maintenance program will be. I have 5 appointments next week and then 3 the week after that.

    This swelling has been going on for about 2 months. It has not disfigured my ankles because I caught it early. The lymphatic system carries proteins and if they are not circulated properly, it causes the skin to disfigure. Apparently, this is fairly common with breast cancer patients.

    This is just a heads up for anyone who has swelling that won't go away.

    The pump does work because after just one day I can see a difference in my ankles.

    Barbara

    Hi Barbara!
    Thanks for sharing the details of your appointment with us and all the information you learned about lymphedema. The pump sounds like a pain, but if it will keep you from having the swelling will be worth it. I guess my 2 hours would be spent in front of the TV every evening. I had foot surgery 5 years ago and there was a lot of swelling. I had to go into the podiatrist's office for treatments that sound very similar. It helped, but after all this time, I still experience swelling in the foot when I stand for too long. The only way to relieve it is to elevate my foot. Please let us know what the maintenance program is going to be. I'm sure others have had this same issue and would like to know. Thanks and I wish you the best with this!
  • pjjenkins
    pjjenkins Member Posts: 173
    #16
    lemonade said:

    Lymphadema Appt.
    Well, I went to the Lymphadema and Wound Care Institute yesterday here in Houston. I was expecting to get maybe a lymphatic drainage massage and some compression socks. That's not exactly what happened.

    It was a 2 hour appointment. They took general medical history. Put me on a breathing machine for 10 minutes. Marked, measured and photographed my legs. I spoke with an M.D. They did a doppler (ultrasound) to check my legs for blood clots. Then, they put me in a recliner and put each leg in a "garment" (type of sleeve for my legs) and hooked them up to a pump. The pump inflates and deflates chambers in the garment to move the lymphatic fluid out of the areas where the lymph nodes don't work properly anymore. They told me that my lymphatic system was permanently damaged due to the radiation and chemo.

    Then I really got the "deer in the headlights look" when they told me that this was MY pump and I would have to do this for the rest of my life. That was a shocker yesterday.

    The treatment program is 6 weeks and then you go into a maintenance program after that. I have to use the pump on my legs for 2 hours each day. I'm not sure long term what the maintenance program will be. I have 5 appointments next week and then 3 the week after that.

    This swelling has been going on for about 2 months. It has not disfigured my ankles because I caught it early. The lymphatic system carries proteins and if they are not circulated properly, it causes the skin to disfigure. Apparently, this is fairly common with breast cancer patients.

    This is just a heads up for anyone who has swelling that won't go away.

    The pump does work because after just one day I can see a difference in my ankles.

    Barbara

    Holey Moley
    This is the first I have heard of this for lymphedema though I have only really known two friends who are breast cancer survivors who have had lymphedema. Both of them have worn pressure "sleeves" on the affected arm but I am unaware of any pump. On the other hand, we have not shared many details of our cancer journeys because we are usually busy at our various "normal" activities!

    Is it comfortable - the pumping? If it is mimicking massage, it might not be so bad. But 2 hours a day is a long "sit" requirement. The extended time it is taking to take care of ourselves is one of the big adjustments I have had to make in my life.

    May this become associated with some of the more relaxed times in your routines! But more importantly, may it properly solve this swelling problem!

    Priscilla
  • lemonade
    lemonade Member Posts: 63
    #17
    pjjenkins said:

    Holey Moley
    This is the first I have heard of this for lymphedema though I have only really known two friends who are breast cancer survivors who have had lymphedema. Both of them have worn pressure "sleeves" on the affected arm but I am unaware of any pump. On the other hand, we have not shared many details of our cancer journeys because we are usually busy at our various "normal" activities!

    Is it comfortable - the pumping? If it is mimicking massage, it might not be so bad. But 2 hours a day is a long "sit" requirement. The extended time it is taking to take care of ourselves is one of the big adjustments I have had to make in my life.

    May this become associated with some of the more relaxed times in your routines! But more importantly, may it properly solve this swelling problem!

    Priscilla

    The Pump
    Apparently they have been doing this type of treatment in Europe for over 50 years. The pump I am using is actually made in England. The treatment has been in use in the U.S. for about 15 years. The treatment is called Complex Physical Decongestive Therapy (CPDT) which includes Manual Lymph Drainage (MLD), compression bandages, and the pumping, as well as nutritional info and exercise.

    I can break up the 2 hours into shorter time periods or do it all at one time. Yesterday was the first day I used it. It doesn't hurt and it does make my legs feel so much better. I don't know how long I will have to use it on a daily basis after I get through the initial 6 week treatment period. I'm not sure what the maintenance phase will entail.

    After using it, this is the first time I have seen my ankle bones in 2 months. I didn't feel very well and took a nap after using it yesterday. I think it got the the old lymphatic fluid moving, or I was detoxing from it. They told me to drink plenty of water.

    It has been interesting learning about the lymphatic system. By the way, apparently there were no problems with my insurance paying for it. They gave me my pump the very first day. There were also patients there who had pumps on their arms - damage either due to surgery or cancer. Another patient next to me had developed swelling in his legs due to his diabetes.

    So far I like it, but it is a big time commitment. I just don't want my legs to get deformed or get sores that won't heal.

    Barbara
  • z
    z Member Posts: 1,414 Member
    #18
    lemonade said:

    The Pump
    Apparently they have been doing this type of treatment in Europe for over 50 years. The pump I am using is actually made in England. The treatment has been in use in the U.S. for about 15 years. The treatment is called Complex Physical Decongestive Therapy (CPDT) which includes Manual Lymph Drainage (MLD), compression bandages, and the pumping, as well as nutritional info and exercise.

    I can break up the 2 hours into shorter time periods or do it all at one time. Yesterday was the first day I used it. It doesn't hurt and it does make my legs feel so much better. I don't know how long I will have to use it on a daily basis after I get through the initial 6 week treatment period. I'm not sure what the maintenance phase will entail.

    After using it, this is the first time I have seen my ankle bones in 2 months. I didn't feel very well and took a nap after using it yesterday. I think it got the the old lymphatic fluid moving, or I was detoxing from it. They told me to drink plenty of water.

    It has been interesting learning about the lymphatic system. By the way, apparently there were no problems with my insurance paying for it. They gave me my pump the very first day. There were also patients there who had pumps on their arms - damage either due to surgery or cancer. Another patient next to me had developed swelling in his legs due to his diabetes.

    So far I like it, but it is a big time commitment. I just don't want my legs to get deformed or get sores that won't heal.

    Barbara

    Barbara
    Hi Barbara,

    I'm so glad this made your legs feel better, and that you like it. Hopefully after the initial 6 week tx, you won't have to do it as often. I wonder if the pump is something like I had when I had a hemrodectomy. The anestisologist put these cloths around both legs that felt like a massage. He said it was to prevent blood clots while I was in surgery. They were comfortable. I guess they are meant to keep the blood circulating while your immobile. I hope you continue to do well and swelling will go away. Lori
  • z
    z Member Posts: 1,414 Member
    #19
    z said:

    Barbara
    Hi Barbara,

    I'm so glad this made your legs feel better, and that you like it. Hopefully after the initial 6 week tx, you won't have to do it as often. I wonder if the pump is something like I had when I had a hemrodectomy. The anestisologist put these cloths around both legs that felt like a massage. He said it was to prevent blood clots while I was in surgery. They were comfortable. I guess they are meant to keep the blood circulating while your immobile. I hope you continue to do well and swelling will go away. Lori

    Melodie
    Heres the thread. Lori
  • melbas
    melbas Member Posts: 43
    #20
    pjjenkins said:

    dull ache in right upper thigh and hip
    I have this- started about 1 1/4 years after treatment. Cannot sleep long on right side for aching too much. Now nearly a year later is happening on left side also. Have not gotten docs interested yet.

    I have arthritis also but this is, imho, not related to that.

    Until this past month, I have had no ankle swelling but I have started to notice some minor swelling of my left ankle. I still think this may be age related.

    Priscilla

    anal cancer
    Priscella, If you don't mind my asking, how old YOU? j just turned 49 in may, and when I left l first left the3 hospitql earlir it was just a little, now it's 4 times it's 4 timew it's normal size. thanks, Melodie
  • z
    z Member Posts: 1,414 Member
    #21
    melbas said:

    anal cancer
    Priscella, If you don't mind my asking, how old YOU? j just turned 49 in may, and when I left l first left the3 hospitql earlir it was just a little, now it's 4 times it's 4 timew it's normal size. thanks, Melodie

    Melodie
    Melodie,

    Please make sure your doctor is aware of the swelling as you said it was 4 times the size it was when you left the hospital.

Discussion Boards