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calf muscle loss after radiation and ILP
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calf muscle loss after radiation and ILP

› Forums › General Melanoma Community › calf muscle loss after radiation and ILP

  • Post
    • June 19, 2011 at 12:45 pm
    Vermont_Donna
    Participant

      Hi,

      Hi,

      Earlier this year (March) during a visit to my fantastic lymphadema specialist for a "checkup" she pointed out that I had lost some muscle mass in my right calf muscle. Hmmm, I had not noticed that. Started working out and my personal trainer gave me some exercises to build the muscles back up (havent seen any improvement yet). Saw my radiation oncologist for a "checkup" and he answered my questions about why was this happening with explaining that this was a side effect of having radiation, not once but twice to my leg (different areas, basically my whole leg has been radiated AND I had a ILP two years ago).

      So fast forward to June, my right lower leg looks like a skinny stick compared to my left leg and my compression stocking ($600 out of pocket expense as my insurance plan didnt cover it, and I got it new earlier this winter) is hanging off my leg. I have now gone to the pharmacy and bought a thigh high, 18mm compression, which seems to fit ok, and actually feels better as my compression stocking is the pantyhose type, going halfway down my left leg and full coverage on my right…..its hot and uncomfortable in the summer months, but I have worn them for the last 5 years. Til I can speak with my lymphadema specialist this is what I am wearing.

      I also have right foot and right calf neuropathy, ALMOST to the point of not feeling the gas or brake pedal…but not quite, and believe me when that day happens I will get my car fixed with hand controls. My dad also had to do this for his health problems so I know all about it. I can no longer wear shoes or sandals that dont have a back on them or a strap. Ok I can deal with all that. My right leg is now weaker than my left, understandably so, so I am working on doing those exercises but sure would like to see some improvement. I plan to go see my radiation oncologist to revisit this issue again.

      I am just curious if others have experienced this side effect from radiation or ILP?? I am also still doing well as a "complete responder" to Ipi and am returning to work soon at the mental health agency where I have worked the last 12 years.

      Vermont_Donna, stage 3a NED

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    • Replies
        • June 19, 2011 at 2:50 pm
        lhaley
        Participant

          Donna,

          I'm starting radiation in about a week on my arm. I specifically asked about neurapathy and weakness and told that I shouldn't have issues. For me they are going after cells not tumors but the area is about 6 or so inches long.  It was explained to me that it was the amound of radiation that was given (not sure what the units are called). I was told I would have 4,500.  I'm really interested in what you find out!

          I was told that there were no promises about the side effects but the main one I would have would be the skin issues. They will be aiming to the nerve line but it would be a low enough dose that it should not go through the sheathing.  This was a consult with a top radiologist in Charlotte that works with my team.  He has already consulted with a local radiologist that will be actually doing the work. 

          Did you do Interfuron that could have started your issues with the neurapathy?  I also have only had 6 nodes removed in the area.  Being stage IV they just cherry pick on me.  They are doing the radiation to try and prevent more surgery which would definitely damage the nerve.

          Is your lymphedema still bad enough after 6 years that you have to wear the compression garment at all times?   My husband broke his ankle over 28 years ago and was in traction for a long time.  His thigh is still slightly different from the muscle loss.

          Linda

          • June 19, 2011 at 2:50 pm
          lhaley
          Participant

            Donna,

            I'm starting radiation in about a week on my arm. I specifically asked about neurapathy and weakness and told that I shouldn't have issues. For me they are going after cells not tumors but the area is about 6 or so inches long.  It was explained to me that it was the amound of radiation that was given (not sure what the units are called). I was told I would have 4,500.  I'm really interested in what you find out!

            I was told that there were no promises about the side effects but the main one I would have would be the skin issues. They will be aiming to the nerve line but it would be a low enough dose that it should not go through the sheathing.  This was a consult with a top radiologist in Charlotte that works with my team.  He has already consulted with a local radiologist that will be actually doing the work. 

            Did you do Interfuron that could have started your issues with the neurapathy?  I also have only had 6 nodes removed in the area.  Being stage IV they just cherry pick on me.  They are doing the radiation to try and prevent more surgery which would definitely damage the nerve.

            Is your lymphedema still bad enough after 6 years that you have to wear the compression garment at all times?   My husband broke his ankle over 28 years ago and was in traction for a long time.  His thigh is still slightly different from the muscle loss.

            Linda

            • June 19, 2011 at 3:06 pm
            ValinMtl
            Participant

              HI Donna,

              My problem right leg is still larger than the left leg so I don't have your problem.  But I can tell you last October and November before my other problems started I had gone at least 3 times a week to an indoor pool…what a difference, my physio couldn't get over it!!!  I would do 10 laps, of course, not beautiful as I'm not a strong swimmer but pushed myself. It would also strengthen the calf area. I can't now due to leakage from the sub-qs but I highly recommend it. Do you have a pool near you? 

              I too use the panty hose for the last 3 years and your right, it's terribly hot in summer and not pleasant.  I actually prefer it when Bill wraps the bad leg which feels 10 times better than the stockings but awkward (as in shoes to fit and flexibility).  I am planning to see if I can just use one stocking also I have bought the solaris tribute for night time like you recommended.  

              Really glad to see you are planning to go back to work, it's your passion!!

              Val xx

                • June 24, 2011 at 12:05 am
                boot2aboot
                Participant

                  i would ask the docs for an EMG/NCT…pt and ot cannot do this…you have to go to a neurologist…this test will tell you if you nerves or damaged or dead…if the damage is done to motor nervers or sensory nerves…if dead, not much can be done except palliative…if damaged then drugs and ot can help…i have nerve damage also in the feet and legs…mine BURN/Vibrate all the time…i take neurontin for the pain.

                  boots

                  • June 24, 2011 at 12:05 am
                  boot2aboot
                  Participant

                    i would ask the docs for an EMG/NCT…pt and ot cannot do this…you have to go to a neurologist…this test will tell you if you nerves or damaged or dead…if the damage is done to motor nervers or sensory nerves…if dead, not much can be done except palliative…if damaged then drugs and ot can help…i have nerve damage also in the feet and legs…mine BURN/Vibrate all the time…i take neurontin for the pain.

                    boots

                  • June 19, 2011 at 3:06 pm
                  ValinMtl
                  Participant

                    HI Donna,

                    My problem right leg is still larger than the left leg so I don't have your problem.  But I can tell you last October and November before my other problems started I had gone at least 3 times a week to an indoor pool…what a difference, my physio couldn't get over it!!!  I would do 10 laps, of course, not beautiful as I'm not a strong swimmer but pushed myself. It would also strengthen the calf area. I can't now due to leakage from the sub-qs but I highly recommend it. Do you have a pool near you? 

                    I too use the panty hose for the last 3 years and your right, it's terribly hot in summer and not pleasant.  I actually prefer it when Bill wraps the bad leg which feels 10 times better than the stockings but awkward (as in shoes to fit and flexibility).  I am planning to see if I can just use one stocking also I have bought the solaris tribute for night time like you recommended.  

                    Really glad to see you are planning to go back to work, it's your passion!!

                    Val xx

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