Chemo Induced Peripheral Neuropathy with restless leg syndrome

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Comments

  • Unknown
    Unknown
    #22
    unknown said:

    Carie

    So sorry to hear this. However I am certain the girliefighter will prevail. I know there is a lot of ra-rah-rah and an understandable urge to do many things at once. However - you might wnt to take it a little easier. Sounds like finances are tight and you have to work, but could school wait a few months? I am convinced that burning my candle at both ends weakened me to the point I got lymphoma. If its an option please try to back off a little and take it easy for a few months.

    also I have found my best solution to the restless leg syndrome is hot baths. I sometimes get up and take a hot bath at 3AM just to relax the legs so I can sleep.

    all my best

    Alpha Lipoic Acid Supplements

    I do believe that APA is mainly used for diabetes induced neuropathy. I have a Dr inthe family and will ask him and let you know what he says. I agree that it certainly is worth a try. I will let you know if it helps me.

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,817 Member
    #23
    girliefighter said:

    Gloves

    Jim,

    I thought I was going to get to retire those gloves and go back to my black ones that are worn out, but clearly I will bring those pink mamajamma's back out again!

    I am definitely going to pick some of that up tomorrow, I was hoping someone would mention something more along the lines of a natural treatment vs. the Anti-Seizure meds I am on now..Got me to thinking how sometimes the side effects of our treatments put us in worse shape than previously...Darn doubled eged swords anyway

    XXXOOO

    Carie

    Pretty in Pink

    Carie,

    Three items:

    (1) The pink gloves will help a lot.  When about bald, at Party City I got a foot-long, greyish and black wig.  I looked like the guitarist Slash, but talked like Keith Richards.  The humor in it made me feel a little better.

    (2) I agree with GK's thoughts on taking it as easy as possible. Do not slay too many dragons at once.  Rest is curative.

    (3) I work in blighted, ghetto neighborhoods all night long.  When I read the comment about "hoe walk"  above, Kissat first I misunderstood.

    max

  • GalacDad
    GalacDad Member Posts: 40
    #24
    girliefighter said:

    Gloves

    Jim,

    I thought I was going to get to retire those gloves and go back to my black ones that are worn out, but clearly I will bring those pink mamajamma's back out again!

    I am definitely going to pick some of that up tomorrow, I was hoping someone would mention something more along the lines of a natural treatment vs. the Anti-Seizure meds I am on now..Got me to thinking how sometimes the side effects of our treatments put us in worse shape than previously...Darn doubled eged swords anyway

    XXXOOO

    Carie

    Amazing thread this has

    Amazing thread this has generated! After readingf through the string, I found that Max and I share almost the identical symptoms.

    I was wondering if those with the most severe issues were treated to the full complement of chemo and rads. I've been talking with some new found brethern of the Hodg and have found out that they are not having the same issues as some of us. The biggest difference is that their treatments were halted around the half way point when they were checking clean on all the tests, plus they did not recieve radiation.

    I know this is a fairly new protocol for the Docs to take, but I emember asking my Onc if I could stop when I had check clean but was told once the course is started you need to run it through. made sense then, but WOW, dealing with this daily for the past four years reallly BITES.

    Does anyone else have effects that migrate and change over time?

    I've on occassion lost the ability to taste, feel temperature when eating, slurred speech. And my favorite, I could not sense weight when lifting. Thought I was "Superman" for a day until it wore off and relized I had severely spraned my wrist and arm. The Docs were flabergasted when I told them what happened.

    I've been keeping a journal of what happens, just for laughs, My Onc usally looks shocked and bewildered

     

    Dave

  • Mary N.
    Mary N. Member Posts: 100
    #25
    unknown said:

    Alpha Lipoic Acid Supplements

    I do believe that APA is mainly used for diabetes induced neuropathy. I have a Dr inthe family and will ask him and let you know what he says. I agree that it certainly is worth a try. I will let you know if it helps me.

    Like some of the rest of you I have found that ALA alpha Lipoic Acid really helps me.  It does take a month or two and I had to up the dose to 600 mg in am and evening.  I also use with meals.  Another thing for the cramps and restless leg stuff is I take a shower.  Something about the water rolling over the body helps.  I also find it is necessary to keep my potassium at a normal level.  Arn't we lucky with these side effects.  Mary

     

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,817 Member
    #26
    GalacDad said:

    Amazing thread this has

    Amazing thread this has generated! After readingf through the string, I found that Max and I share almost the identical symptoms.

    I was wondering if those with the most severe issues were treated to the full complement of chemo and rads. I've been talking with some new found brethern of the Hodg and have found out that they are not having the same issues as some of us. The biggest difference is that their treatments were halted around the half way point when they were checking clean on all the tests, plus they did not recieve radiation.

    I know this is a fairly new protocol for the Docs to take, but I emember asking my Onc if I could stop when I had check clean but was told once the course is started you need to run it through. made sense then, but WOW, dealing with this daily for the past four years reallly BITES.

    Does anyone else have effects that migrate and change over time?

    I've on occassion lost the ability to taste, feel temperature when eating, slurred speech. And my favorite, I could not sense weight when lifting. Thought I was "Superman" for a day until it wore off and relized I had severely spraned my wrist and arm. The Docs were flabergasted when I told them what happened.

    I've been keeping a journal of what happens, just for laughs, My Onc usally looks shocked and bewildered

     

    Dave

    Radiation

    Dave,

    Interesting that your experience was/is very much like mine.

    If I did not mention it, I NEVER had ANY radiation.  But, I did have the MAX amount of abvd permitted by the FDA, which is 12 infusions (6 "cycles").  I guess that is a lot of Vinblastine.    Perhaps you can become a high-dollar researcher ?

    Bless you guys,

    max

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,817 Member
    #27
    PBR

    Carie,

    Pabst Blue Ribbon slightly increases my numbness, but causes me to be ok with it !

    max

  • girliefighter
    girliefighter Member Posts: 232
    #28
    unknown said:

    Alpha Lipoic Acid Supplements

    I do believe that APA is mainly used for diabetes induced neuropathy. I have a Dr inthe family and will ask him and let you know what he says. I agree that it certainly is worth a try. I will let you know if it helps me.

    Alpha Lipoic Acid

    IT WORKED!!!!. I have been taking ALA 600mg a day and my super B complex and I am happy to report that I have very little neuropathy left. I got the ALpha Lipoic Acid at GNC for $16.99, best $ ever spent in my book.

     

    Carie

  • girliefighter
    girliefighter Member Posts: 232
    #29
    Max Former Hodgkins Stage 3 said:

    PBR

    Carie,

    Pabst Blue Ribbon slightly increases my numbness, but causes me to be ok with it !

    max

    PBR

    Max,

    I didn't know they still made that stuff, my grandma used to consume large amounts of that daily

    LOL

     

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,817 Member
    #30
    girliefighter said:

    PBR

    Max,

    I didn't know they still made that stuff, my grandma used to consume large amounts of that daily

    LOL

     

    Yup !

    Carie,

    PBR has made a huge comback in the last ten years or so, and is a staple in almost all music clubs and concert events.

    I am not encouraging anyone to drink, of course.

    I bet your grandma is (or was) happy !

    max

    .

  • girliefighter
    girliefighter Member Posts: 232
    #31
    Max Former Hodgkins Stage 3 said:

    Yup !

    Carie,

    PBR has made a huge comback in the last ten years or so, and is a staple in almost all music clubs and concert events.

    I am not encouraging anyone to drink, of course.

    I bet your grandma is (or was) happy !

    max

    .

    Grandma and PBR

    Max,

    No she is an ornry old coot.....she also used to hit the wild turkey pretty heavy too....ahh..being a youngster at grandparents on the weekends was fun...Granny would start drinking the PBR and we watched Dallas and Golden Girls....She is fancy now though, she drinks wine!!!LOL

    I am pretty sure like almost 100% sure, that I have a winter hat made out of Hamms and PBR beer cans fromt the ancient days...My other grandma used to knit them or something and they punched holes in the cans and sewed them in....This hat was always a hit at the ELKS conventions, the old men loved me for itWink

  • LaurieKW
    LaurieKW Member Posts: 14
    #32
    Peripheral neuropathy suggestion

    Hi - new to this group! i had severe neuropathy that started during my 3rd 5 day cycle of rEPOCH.  After the 6th cycle I started a lot of physical therapy and acupuncture which helped somewhat.  Had really good advice from my podiatrist which helped; he  recommended 300mg of benfotiamine (one 150 mg pill in morning and eve) with ALA (alpha Lipoic  acid).  It took about 2-3 weeks to feel the benefit but this was preferable to me as  I really did not want to take antidepressants, neurontin nor anti seizure drugs.  I had enough problems with the daily high dose of prednisone and chemo.  I did start to get neuropathy in my hands early on in treatment, but I started using one of those adjustable tension hand grips (about 15-20 reps 5 or 6 x day) and that helped a lot.  Hope you are doing better.

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