Clinical Trial PREVENTION OF NEUROPATHY WITH ALPHA-LIPOIC ACID

lizzydavis
lizzydavis Member Posts: 893
edited March 2014 in Colorectal Cancer #1
Are any of you taking part of this Clinical Trial by MD Anderson?

Comments

  • kmygil
    kmygil Member Posts: 876 Member
    #2
    No, but I would if I could
    Hmmm.... I wish I could participate. I am 2.5 years out of chemo & still have neuropathy in my feet. While I've gotten used to the numbness mostly, every now & then I get the peendles (pins & needles), the sharples (sharp pains stabbing upward) and the progressives (when I forget to take the gabapentin it progresses back up my legs.) Anything they are doing to make it GO AWAY would be lovely. How do I get on this trial?

    Kirsten
  • lesvanb
    lesvanb Member Posts: 905
    #3
    R-lipoic Acid
    No but I am taking R-lipoic acid prescribed by my naturopath to protect from neuropathy. I do have grade 1 neuropathy form the oxali but did do 11 treatments and my doctor said that few people can do that many wirth so little damage.

    Leslie
  • lizzydavis
    lizzydavis Member Posts: 893
    #4
    kmygil said:

    No, but I would if I could
    Hmmm.... I wish I could participate. I am 2.5 years out of chemo & still have neuropathy in my feet. While I've gotten used to the numbness mostly, every now & then I get the peendles (pins & needles), the sharples (sharp pains stabbing upward) and the progressives (when I forget to take the gabapentin it progresses back up my legs.) Anything they are doing to make it GO AWAY would be lovely. How do I get on this trial?

    Kirsten

    Contact Info for Clinical Trial at MD Anderson
    I just started with this clinical trial. The only thing is that I could be taking a placebo or the real medicine. I will not know until after the study.

    This is the website:
    http://utm-ext01a.mdacc.tmc.edu/dept/prot/clinicaltrialswp.nsf/Index/2004-0728

    Study Title: PREVENTION OF CISPLATIN- OR OXALIPLATIN-INDUCED PERIPHERAL NEUROPATHY WITH ALPHA-LIPOIC ACID: A PLACEBO-CONTROLLED PHASE III TRIAL
    . Physician New Patient Referral


    Name: Ying Guo Patients Call: 800-392-1611 (in U.S.A.) 713-792-6161 (outside U.S.A.)

    Dept: Palliative Care & Rehabilitation Medicine Referring MD
    Call: 800-392-1611 (in U.S.A.) 713-792-6161 (outside U.S.A.)

    Phone: 713-745-2327
    Contact us about clinical trials
  • lizzydavis
    lizzydavis Member Posts: 893
    #5
    lesvanb said:

    R-lipoic Acid
    No but I am taking R-lipoic acid prescribed by my naturopath to protect from neuropathy. I do have grade 1 neuropathy form the oxali but did do 11 treatments and my doctor said that few people can do that many wirth so little damage.

    Leslie

    R-Lipoic Acid
    Hi Leslie,

    What kind of damage do you have? What is grade 1? Do you believe the R-lipoic acid was the main factor in having little damage? Do you take 2 pills 3 times per day? Do you know the difference in the R-lipoic acid and the alpha lipoic acid? I could be on a placebo. I also heard that Vitamin B6 is good for the neuropathy. Have you heard that too? Thanks for sharing.

    Liz
  • Annabelle41415
    Annabelle41415 Member Posts: 6,742 Member
    #6
    lizzydavis said:

    R-Lipoic Acid
    Hi Leslie,

    What kind of damage do you have? What is grade 1? Do you believe the R-lipoic acid was the main factor in having little damage? Do you take 2 pills 3 times per day? Do you know the difference in the R-lipoic acid and the alpha lipoic acid? I could be on a placebo. I also heard that Vitamin B6 is good for the neuropathy. Have you heard that too? Thanks for sharing.

    Liz

    Vitamin B6
    My first treatment I had very little side effects in throat and hands only lasting a day. Second treatment it was more severe and lasted 5 days. I then started the vitamin B6 and the third treatment I noticed the throat and cold sensitivity in my hands but it only lasted a couple of days and not every time I touched or drank something. I believe it helped big time. I will see as time goes on though.

    Kim
  • lizzydavis
    lizzydavis Member Posts: 893
    #7
    Annabelle41415 said:

    Vitamin B6
    My first treatment I had very little side effects in throat and hands only lasting a day. Second treatment it was more severe and lasted 5 days. I then started the vitamin B6 and the third treatment I noticed the throat and cold sensitivity in my hands but it only lasted a couple of days and not every time I touched or drank something. I believe it helped big time. I will see as time goes on though.

    Kim

    B6 Treatments
    Hi Kim,

    -- Glad to hear B6 treatments have helped. How much B6 do you take and how often? Did you purchase these in the Vitamin section or do you receive shots? Thanks for the info.

    Liz
  • lesvanb
    lesvanb Member Posts: 905
    #8
    lizzydavis said:

    R-Lipoic Acid
    Hi Leslie,

    What kind of damage do you have? What is grade 1? Do you believe the R-lipoic acid was the main factor in having little damage? Do you take 2 pills 3 times per day? Do you know the difference in the R-lipoic acid and the alpha lipoic acid? I could be on a placebo. I also heard that Vitamin B6 is good for the neuropathy. Have you heard that too? Thanks for sharing.

    Liz

    Neuropathy damage
    Hi Liz

    Here is the the URL for oxaliplatin (Eloxatin) induced neuropathy
    http://www.eloxatin.com/hcp/patient_management/assessing_neuropathy.aspx

    I have tingling and some numbness in soles of my feet and tips of fingers. Sometimes there are twinges of pain in the soles of my feet. It interferes with balance a bit and with grasping objects with my hands (wish I could grab objects with my feet eh?). It's tiring to deal with 'cause I need to pay close attention. Yoga has been helpful with this.

    R-lipoic acid is more biologically available, and more expensive, so I took both forms. I took 400-660 mg/day combined.

    I also took B6 plus a B-complex.

    L-glutamine has been tested in clinical trials as well. I took 30 gm/day. Vital nutrients has it.

    I'm now taking liposomal glutathione for neuropathy and detox from chemo. I'm also getting infra red treatments at physical therapy for neuropathy..

    Drug companies say this neuropathy will pass in 4-6 months so I'm hopeful, if skeptical about what drug companies say.

    I think my physical therapist describes it best when he says that all my work and intent may make a difference–I'm doing all I can–and whether it resolves or not, I will know I did all I could.

    Leslie
  • kmygil
    kmygil Member Posts: 876 Member
    #9
    lizzydavis said:

    Contact Info for Clinical Trial at MD Anderson
    I just started with this clinical trial. The only thing is that I could be taking a placebo or the real medicine. I will not know until after the study.

    This is the website:
    http://utm-ext01a.mdacc.tmc.edu/dept/prot/clinicaltrialswp.nsf/Index/2004-0728

    Study Title: PREVENTION OF CISPLATIN- OR OXALIPLATIN-INDUCED PERIPHERAL NEUROPATHY WITH ALPHA-LIPOIC ACID: A PLACEBO-CONTROLLED PHASE III TRIAL
    . Physician New Patient Referral


    Name: Ying Guo Patients Call: 800-392-1611 (in U.S.A.) 713-792-6161 (outside U.S.A.)

    Dept: Palliative Care & Rehabilitation Medicine Referring MD
    Call: 800-392-1611 (in U.S.A.) 713-792-6161 (outside U.S.A.)

    Phone: 713-745-2327
    Contact us about clinical trials

    Thank you!
    Thanks so much for the information! I'm going to see if I can squeeze on board the trial train. Thank you!!!

    Kirsten
  • SchoolBoardLady
    SchoolBoardLady Member Posts: 5
    #10
    lesvanb said:

    Neuropathy damage
    Hi Liz

    Here is the the URL for oxaliplatin (Eloxatin) induced neuropathy
    http://www.eloxatin.com/hcp/patient_management/assessing_neuropathy.aspx

    I have tingling and some numbness in soles of my feet and tips of fingers. Sometimes there are twinges of pain in the soles of my feet. It interferes with balance a bit and with grasping objects with my hands (wish I could grab objects with my feet eh?). It's tiring to deal with 'cause I need to pay close attention. Yoga has been helpful with this.

    R-lipoic acid is more biologically available, and more expensive, so I took both forms. I took 400-660 mg/day combined.

    I also took B6 plus a B-complex.

    L-glutamine has been tested in clinical trials as well. I took 30 gm/day. Vital nutrients has it.

    I'm now taking liposomal glutathione for neuropathy and detox from chemo. I'm also getting infra red treatments at physical therapy for neuropathy..

    Drug companies say this neuropathy will pass in 4-6 months so I'm hopeful, if skeptical about what drug companies say.

    I think my physical therapist describes it best when he says that all my work and intent may make a difference–I'm doing all I can–and whether it resolves or not, I will know I did all I could.

    Leslie

    Your helpful information and passion for horses!
    Leslie, I'm post surg, having had four treatments with Folfox before surgery and I started post chemo today.

    If you still read these posts, would you mind telling me where you obtained your glutathione.
    I dosed myself with 15 g of glutamine today and my neuropathy actually seems less severe (knock on wood how I feel in three days). What does your oncologist think of the B vits and R-lipoic acid--mine Onco said "no way"... got very excited (not in a good way) when I asked him his opinion.

    Margaret

    I hope your Neuropathy is improving, mine was pretty tough each of my pre-surge treatments and I live in Virginia where it's always warm.
  • SchoolBoardLady
    SchoolBoardLady Member Posts: 5
    #11
    lesvanb said:

    Neuropathy damage
    Hi Liz

    Here is the the URL for oxaliplatin (Eloxatin) induced neuropathy
    http://www.eloxatin.com/hcp/patient_management/assessing_neuropathy.aspx

    I have tingling and some numbness in soles of my feet and tips of fingers. Sometimes there are twinges of pain in the soles of my feet. It interferes with balance a bit and with grasping objects with my hands (wish I could grab objects with my feet eh?). It's tiring to deal with 'cause I need to pay close attention. Yoga has been helpful with this.

    R-lipoic acid is more biologically available, and more expensive, so I took both forms. I took 400-660 mg/day combined.

    I also took B6 plus a B-complex.

    L-glutamine has been tested in clinical trials as well. I took 30 gm/day. Vital nutrients has it.

    I'm now taking liposomal glutathione for neuropathy and detox from chemo. I'm also getting infra red treatments at physical therapy for neuropathy..

    Drug companies say this neuropathy will pass in 4-6 months so I'm hopeful, if skeptical about what drug companies say.

    I think my physical therapist describes it best when he says that all my work and intent may make a difference–I'm doing all I can–and whether it resolves or not, I will know I did all I could.

    Leslie

    Your helpful information and passion for horses!
    Leslie, I'm post surg, having had four treatments with Folfox before surgery and I started post chemo today.

    If you still read these posts, would you mind telling me where you obtained your glutathione.
    I dosed myself with 15 g of glutamine today and my neuropathy actually seems less severe (knock on wood how I feel in three days). What does your oncologist think of the B vits and R-lipoic acid--mine Onco said "no way"... got very excited (not in a good way) when I asked him his opinion.

    Margaret

    I hope your Neuropathy is improving, mine was pretty tough each of my pre-surge treatments and I live in Virginia where it's always warm.

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