Neuropathy solutions?

stepmj
stepmj Member Posts: 32
edited March 2014 in Esophageal Cancer #1
Hi All -

My Dad has neuropathy as a result of the chemo. The worst part is his legs are numb from the knees down. Some days are worst than others but nothing seems to really treat the problem.

We've tried Lyrica, Elavil, and magnesium supplements but so far nothing is working. Any ideas would be hugely appreciated!

Thanks,
MJ

Comments

  • Tina Blondek
    Tina Blondek Member Posts: 1,500 Member
    #2
    Hi MJ and welcome to you and
    Hi MJ and welcome to you and your dad. I was a caregiver for my dad. He passed away in March from ec with mets to the liver. I continue to come to these discussion boards to help others. It helps me to do so. I know of another couple, sherri and Jim. Jim also suffered from neuropathy. Sherri told us that the best thing for him was to go to an acupuncherist. (spelling?) What do his drs suggest? Best of luck to both of you.
    Tina
  • 38sallyb
    38sallyb Member Posts: 87
    #3
    Neuropathy
    My husband's neuropathy was helped by acupuncture when we were close enough for him to have the treatments 2-3 times per week. Now that we are in the mountains of Colorado, we aren't close enough for that, so I have been massaging his feet several times a day with a lotion I got at Bath and Body Works "Shea Cashmere". Jim is VERY sensitive to fragrances now and anything remotely floral is way too much, but this smells like buttercream frosting! The reason I like it, is that is stays smooth and fluid. So many lotions get "sticky" after a few minutes, and oils, while good, are very messy and usually are difficult to remove from bedding and clothing. He only has two tiny areas on his feet now, on the soles, left heel and under the right toes. Major improvement from the tingles and numbness of a couple of months ago. Takes daily work!
    We are waiting now to see if he is a candidate for ThereSpheres. We could use some prayers, as we have an appointment for the consultation on Aug 3, which, coincidentally, is our 53rd wedding anniversary!
    38SallyB
  • stepmj
    stepmj Member Posts: 32
    #4
    38sallyb said:

    Neuropathy
    My husband's neuropathy was helped by acupuncture when we were close enough for him to have the treatments 2-3 times per week. Now that we are in the mountains of Colorado, we aren't close enough for that, so I have been massaging his feet several times a day with a lotion I got at Bath and Body Works "Shea Cashmere". Jim is VERY sensitive to fragrances now and anything remotely floral is way too much, but this smells like buttercream frosting! The reason I like it, is that is stays smooth and fluid. So many lotions get "sticky" after a few minutes, and oils, while good, are very messy and usually are difficult to remove from bedding and clothing. He only has two tiny areas on his feet now, on the soles, left heel and under the right toes. Major improvement from the tingles and numbness of a couple of months ago. Takes daily work!
    We are waiting now to see if he is a candidate for ThereSpheres. We could use some prayers, as we have an appointment for the consultation on Aug 3, which, coincidentally, is our 53rd wedding anniversary!
    38SallyB

    Acupuncture and SIR-Spheres
    Hi Tina and Sally -
    Thank you for the suggestions of acupuncture and massage - The doctor has suggested accupuncture but my Dad is not crazy about the idea. He is 85 and "new age" medicine is something he's not as comfortable with as I am. He feels the same way about massage (can you believe it!) However, seeing the same response from two who have been there might encourage him to give it a try.

    Sally - My Dad had SIR-spheres about 10 days ago on the 14th. I believe you are the one planning a consult with Dr. Nutting in Denver? If so, see if he will mail you the CDRom that talks about the procedure BEFORE your visit. It describes EXACTLY what will happen and if you see it before your appt you may have questions you might not have otherwise had. Dr. Nutting is on the video so you'll get a feel for his style as well. He was the first doctor in the US to perform the procedure and he's done over 600 of them - we are so very comfortable with him and all his associates. Please post and let us know how your consult goes!

    Tina - I'm walking in your shoes. My Dad was diagnosed stage 4 with mets to the liver a year ago. I'm particularly appreciative of your continued participation on this site - I've read several of your posts and your experience is so helpful. Thank you!

    Prayers for all
    Thank you,
    MJ
  • Tina Blondek
    Tina Blondek Member Posts: 1,500 Member
    #5
    stepmj said:

    Acupuncture and SIR-Spheres
    Hi Tina and Sally -
    Thank you for the suggestions of acupuncture and massage - The doctor has suggested accupuncture but my Dad is not crazy about the idea. He is 85 and "new age" medicine is something he's not as comfortable with as I am. He feels the same way about massage (can you believe it!) However, seeing the same response from two who have been there might encourage him to give it a try.

    Sally - My Dad had SIR-spheres about 10 days ago on the 14th. I believe you are the one planning a consult with Dr. Nutting in Denver? If so, see if he will mail you the CDRom that talks about the procedure BEFORE your visit. It describes EXACTLY what will happen and if you see it before your appt you may have questions you might not have otherwise had. Dr. Nutting is on the video so you'll get a feel for his style as well. He was the first doctor in the US to perform the procedure and he's done over 600 of them - we are so very comfortable with him and all his associates. Please post and let us know how your consult goes!

    Tina - I'm walking in your shoes. My Dad was diagnosed stage 4 with mets to the liver a year ago. I'm particularly appreciative of your continued participation on this site - I've read several of your posts and your experience is so helpful. Thank you!

    Prayers for all
    Thank you,
    MJ

    Hello MJ
    You are most
    Hello MJ
    You are most welcome. Anything I can do for you and your dad. I meant the couple on here are Sally and Jim. Sherri is another wonderful member. I guess I got the names mixed up. Your dad sounds so familiar to my dad in alot of ways. They are totally "old school" and set in their ways. Hopefully your dad will try the massage and acupuncture, it will do him a world of good!
    You hang in there and keep doing what you are doing. I will be thinking of you and praying for both of you.
    Tina
  • stepmj
    stepmj Member Posts: 32
    #6
    Tina Blondek said:

    Hello MJ
    You are most
    Hello MJ
    You are most welcome. Anything I can do for you and your dad. I meant the couple on here are Sally and Jim. Sherri is another wonderful member. I guess I got the names mixed up. Your dad sounds so familiar to my dad in alot of ways. They are totally "old school" and set in their ways. Hopefully your dad will try the massage and acupuncture, it will do him a world of good!
    You hang in there and keep doing what you are doing. I will be thinking of you and praying for both of you.
    Tina

    Thank you!
    Tina - thank you again. I am the one who got things mixed up - so much for multi-tasking!!
    I have a number from the doctor for acupuncture/massage - I'll give them a call and see what the scoop is - maybe I can help my Dad try out some of this "new stuff"!

    Thank you so much
    MJ (MaryJO)

    ps - your Dad was very lucky to have you for his daughter...he must be smiling as he watches all you do for others :)
  • Unknown
    Unknown
    #7
    This comment has been removed by the Moderator
  • stepmj
    stepmj Member Posts: 32
    #8
    unknown said:

    This comment has been removed by the Moderator

    Solutions
    Thank you for the suggested vitamins - I called his doctor and he gave us the green light to try them out!

    Then I called my Dad with the good news and he told me he started taking the Elavil again to give it another try (it's been a couple months since he first tried it) and he says it seems to be working now - which I guess wouldn't surprise me. He has been off chemo for 30 days so maybe the Elavil will work better without the chemo.

    Anyway - I'm grateful to have another couple ideas in my back pocket - you guys are the best.

    Thanks!
    MaryJo
  • 38sallyb
    38sallyb Member Posts: 87
    #9
    stepmj said:

    Acupuncture and SIR-Spheres
    Hi Tina and Sally -
    Thank you for the suggestions of acupuncture and massage - The doctor has suggested accupuncture but my Dad is not crazy about the idea. He is 85 and "new age" medicine is something he's not as comfortable with as I am. He feels the same way about massage (can you believe it!) However, seeing the same response from two who have been there might encourage him to give it a try.

    Sally - My Dad had SIR-spheres about 10 days ago on the 14th. I believe you are the one planning a consult with Dr. Nutting in Denver? If so, see if he will mail you the CDRom that talks about the procedure BEFORE your visit. It describes EXACTLY what will happen and if you see it before your appt you may have questions you might not have otherwise had. Dr. Nutting is on the video so you'll get a feel for his style as well. He was the first doctor in the US to perform the procedure and he's done over 600 of them - we are so very comfortable with him and all his associates. Please post and let us know how your consult goes!

    Tina - I'm walking in your shoes. My Dad was diagnosed stage 4 with mets to the liver a year ago. I'm particularly appreciative of your continued participation on this site - I've read several of your posts and your experience is so helpful. Thank you!

    Prayers for all
    Thank you,
    MJ

    Spheres
    MJ,
    We contacted Dr Nutting and sent all the scans, paperwork etc. but never heard back from his office. So, we are on our
    way to San Antonio for a consultation with Dr Michael Middlebrook regarding Spheres. He was the one who encouraged us to contact Dr Nutting, thinking it would be easier for us to get to Denver than San Antonio.
    Jim needs a new CT and labs, then we'll meet with him on 8/3/10 to see what he thinks. Dr Middlebrook actually called me back himself to answer questions and arrange for our appointment, so we are driving our RV to Texas and should be there by this weekend. We are praying he will be a candidate, despite the growth of the liver tumors.
    Jim is feeling pretty well since his blood transfusion last week, except for some back pain. The oncologist gave him some pain meds to help with that. Driving doesn't bother him and we stop every couple of hours and have a walk and stretch (and food for him).
    Sally
  • stepmj
    stepmj Member Posts: 32
    #10
    38sallyb said:

    Spheres
    MJ,
    We contacted Dr Nutting and sent all the scans, paperwork etc. but never heard back from his office. So, we are on our
    way to San Antonio for a consultation with Dr Michael Middlebrook regarding Spheres. He was the one who encouraged us to contact Dr Nutting, thinking it would be easier for us to get to Denver than San Antonio.
    Jim needs a new CT and labs, then we'll meet with him on 8/3/10 to see what he thinks. Dr Middlebrook actually called me back himself to answer questions and arrange for our appointment, so we are driving our RV to Texas and should be there by this weekend. We are praying he will be a candidate, despite the growth of the liver tumors.
    Jim is feeling pretty well since his blood transfusion last week, except for some back pain. The oncologist gave him some pain meds to help with that. Driving doesn't bother him and we stop every couple of hours and have a walk and stretch (and food for him).
    Sally

    Dr Nutting
    Wow - I'm so disappointed Dr. Nutting did not call you back...weird...

    But sounds like you will be in good hands - if you guys have any questions that I can answer from the patient/caregiver perspective let me know!!

    I'm optimistic Jim is a candidate since it sounds like Dr. Middlebrook has already seen his reports - fingers crossed!!

    Keep us posted.
    MaryJo
  • Tina Blondek
    Tina Blondek Member Posts: 1,500 Member
    #11
    stepmj said:

    Thank you!
    Tina - thank you again. I am the one who got things mixed up - so much for multi-tasking!!
    I have a number from the doctor for acupuncture/massage - I'll give them a call and see what the scoop is - maybe I can help my Dad try out some of this "new stuff"!

    Thank you so much
    MJ (MaryJO)

    ps - your Dad was very lucky to have you for his daughter...he must be smiling as he watches all you do for others :)

    Hey MJ
    Thanks! Yes I do feel
    Hey MJ
    Thanks! Yes I do feel my dad looking down at me from heaven often. I was his "right hand girl" as he called me. Now I must be the "right hand girl" for my mom! Best of luck to you and your dad. Give yourselves some well deserved hugs! Keep in touch.
    Tina

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