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Thread: oxaliplatin induced neuropathy - how to prevent? glutamine?

  1. #1
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    oxaliplatin induced neuropathy - how to prevent? glutamine?

    I have a concern about oxaliplatin induced neuropathy. I questioned our oncologist about using glutamine or CaMG infusion to lower the likelyhood of this occuring but she basically said that these treatments were not approved by her company based on review of the literature. When I read study abstracts though it seems to me that use of glutamine, which is cheap, is a no-brainer.

    Has anyone here been advised by your doctor to use glutamine?

  2. #2
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    Kenny had the neuropathy, his dr never advised him to take anything

  3. #3
    Senior User Buzzard's Avatar
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    Had neuropathy since 08, I was told going in it was a likely side effect. Doc never mentioned anything that might have prevented it.
    DX with Lung Carcinoid Tumor 12/04
    Double Lobectomy 3/05
    DX with Rectal Cancer 12/26/07 Merry Christmas!
    Radiation/Chemo 1/08
    Rectal Resection 3/08, permanent colostomy. Stage 2C
    More chemo 5/08
    Chemo fries bone marrow, 9 days in hospital isolation 7/08
    Recurrence confirmed in pelvic region 12/09
    Tumor radiated with Cyberknife treatment 3/10
    Recurrence/metastasis in pelvis/abdomen 11/10
    Xeloda/Avastin 12/10 to 01/13
    Progression to lungs found 1/13
    Erbitux 01/13 to 01/14
    Acute renal failure, six days in hospital, all chemo stopped for now, 11/13
    Restarted Erbitux, lower dose 12/13
    Kidney function dips again, chemo suspended again. 2/14
    New chemo regimen of low-dose Irrenotecan started 4/14.
    Further progression into lungs, chemo halted, referred to Huntsman Cancer Center for possible clinical trials.
    Sounds like a lot of fun, doesn't it?

  4. #4
    Super Moderator Top User sheila's Avatar
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    Neuropathy unfortunately comes as a side effect of this treatment- no rel know preventative as of yet if you want to try something-make sure you ask the doctor if it can be taken with the specific treatment whether it seems safe or not -suppimental things could do one of 3 things- nothing/may help / may cause more problems-so ask first.(Like I told mom- just ask as long as its not going to be harmfull-try it. nothing to lose.)
    not worth the "more problems" could through electrolytes off and youd wind up in a hospital .
    be carefull.
    also after treatments some neuropathy subsides some goes away after a few years and some is irrreversable- but when you weigh lifeor neuropathy it becomes a no brainer.
    I hope you do find something that will work because alot of people on this and many other forums would love to hear about it.
    maybe you will end up helping us.
    MOMS Journey
    April06- Emergencysurgery,exploratory,10units blood,largetumor and 10inches of colon removed,temp.colostomy.diagnosed stage IV colon.
    oxyplatin,5fu
    Oct06-radiation,surgery,several lymphs,cervix,1 ovary,fallopian,40% remaining colon,large tumor to adipose tissue,appendix,gallbladder removed.permant colostomy/iliostomy
    oxyplatin,transfusion.
    April 07-xeloda-overdose
    surgery-1/3liver,partial diaphra, removed clipped and questionable spots oblated.
    port-port rejection-port removed 1week.
    picc line,5fu,oxyplatin,camptosar.
    Oct-08-surgery-remaining ovary engulfed in tumor,partial bone scrape.
    transfusion central line TPN 1 month.
    oct-09-surgery tumor ,colon and jejuneum removed.
    xeloda reduced. severe dehydration,heart attack.
    april10-remission-avistan
    oct-10-erbitux,camptosar
    Jan-11-5fu
    mar-11 return to original site-oxyplatin,5fu
    Aug-11-erbitux,camptosar.
    dec-28-blood transfusion
    dec-30-back to chemo erbitux camtosar
    Jan-16 injections neulasta and aranesp
    feb16-transfusion
    feb 21-Tumor found stomach,liver, and liver "hot spots" inflamed lymph in rt ureter in kidney causing obstruction-surgery schedualed Mar 16.
    march 16/12-no more kidney obstruction not lymph ...dehydration is causing blockage, two litters blood for anemia, stomach liver tumor small-med,abalation, 1 hidden tumor deep in muscle mass on side flank(hid from scans) -gone!
    june/15/12-blood transfusion
    starting a regimine of celebrex
    aug/16/12-blood transfusion
    aug/30-12 discontinued celebrex -failure one kidney. needed to see urologist
    sept/10-12-good urologist report one kidney functioning well for now.
    oct/23/12-chemo pill Stivarga(regorafenib)
    Nov/22/12-blood transfusion
    dec/18/12-blood transfusion chemo pill dosage cut back to 1 pill.
    Feb/21/13 neulasta injection
    Feb/22/13-blood transfusion. still taking stivarga.
    mar/20/13-arenespt injection rehydration and magnesium IV
    mar/21/13-acute renal failure-kidney infection
    april/1/13.-recovery from 4 day coma infection cleared/4 units blood/ off stivarga/starting rehab therapy,
    swollen hand no apparent reason black spots in vision off and on. both cleared up.
    may/22/13-home oxycodone for pain shoulder neck arm
    june/1/13 pain subsided off oxy onto aleve
    june/09/13-pain back off aleve on vicodin
    june 10/13-cancer in back/neck- starting radiation for arm neck and shoulder pain.
    june24/13-last day of radiation-on steroids
    july1/13-swollen legs and feet-lasix off steroids still on vicodin and xanax
    july 23/13 vicodin cut in half blood transfusion.
    sept/6/13-off all pain meds since late aug
    scan results fracture in spine mid back
    sept/12/13-spine healing on its own,weaning off steroids, no visible tumors.
    nov/7/13-edema both legs and one arm on lasix since oct.
    nov/21/13- leg edema subsiding still alot in one arm- she is talking but keeps her eyes closed. achy but no major pain. nurse and aide to visit once a week schedualed. having trouble standing.
    nov/24/13-sadly but peacefully moms cancer journey is at an end, she will start her new spiritual journey together hand in hand with dad.

  5. #5
    Senior User Buzzard's Avatar
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    I will tell you one thing that has reduced the discomfort for me. Except in the hottest few months of the summer, my toes/feet always feel cold. So I bought some heavy duty trekking/hiking socks that have lots of extra padding in the toes and ball area of the foot, as well as the heel. It's like having a blanket wrapped around my feet, and makes the tingling and cold a lot more bearable. Thorlo and Smartwool make the best quality trekking socks, IMHO. They aren't cheap, but worth every penny.
    DX with Lung Carcinoid Tumor 12/04
    Double Lobectomy 3/05
    DX with Rectal Cancer 12/26/07 Merry Christmas!
    Radiation/Chemo 1/08
    Rectal Resection 3/08, permanent colostomy. Stage 2C
    More chemo 5/08
    Chemo fries bone marrow, 9 days in hospital isolation 7/08
    Recurrence confirmed in pelvic region 12/09
    Tumor radiated with Cyberknife treatment 3/10
    Recurrence/metastasis in pelvis/abdomen 11/10
    Xeloda/Avastin 12/10 to 01/13
    Progression to lungs found 1/13
    Erbitux 01/13 to 01/14
    Acute renal failure, six days in hospital, all chemo stopped for now, 11/13
    Restarted Erbitux, lower dose 12/13
    Kidney function dips again, chemo suspended again. 2/14
    New chemo regimen of low-dose Irrenotecan started 4/14.
    Further progression into lungs, chemo halted, referred to Huntsman Cancer Center for possible clinical trials.
    Sounds like a lot of fun, doesn't it?

  6. #6
    Administrator Top User Didee's Avatar
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    Found this on it.

    http://www.umm.edu/altmed/articles/glutamine-000307.htm

    Glutamine

    Overview:

    Glutamine is the most abundant amino acid (building block of protein) in the body. The body can make enough glutamine for its regular needs, but extreme stress (the kind you would experience after very heavy exercise or an injury), your body may need more glutamine than it can make. Most glutamine is stored in muscles followed by the lungs, where much of the glutamine is made.
    Glutamine is important for removing excess ammonia (a common waste product in the body). It also helps your immune system function and appears to be needed for normal brain function and digestion.
    You can usually get enough glutamine without taking a supplement, because your body makes it and you get some in your diet. Certain medical conditions, including injuries, surgery, infections, and prolonged stress, can lower glutamine levels, however. In these cases, taking a glutamine supplement may be helpful.




    Cancer
    Many people with cancer have low levels of glutamine. For this reason, some researchers speculate that glutamine may be helpful when added to conventional cancer treatment for some people. Supplemental glutamine is often given to malnourished cancer patients undergoing chemotherapy or radiation treatments and sometimes used in patients undergoing bone marrow transplants. (See Interactions below.)
    Glutamine seems to help reduce stomatitis (an inflammation of the mouth) caused by chemotherapy. Some studies, but not all, have suggested that taking glutamine orally may help reduce diarrhea associated with chemotherapy.
    More clinical research is needed to know whether glutamine is safe or effective to use as part of the treatment regimen for cancer.
    Dietary Sources:

    Dietary sources of glutamine include plant and animal proteins such as beef, pork and poultry, milk, yogurt, ricotta cheese, cottage cheese, raw spinach, raw parsley, and cabbage.

    Available Forms:

    Glutamine, usually in the form of L-glutamine, is available by itself or as part of a protein supplement. These come in powder, capsule, tablet, or liquid form.
    Standard preparations are typically available in 500 mg tablets or capsules.

    How to Take It:

    Take glutamine with cold or room temperature foods or liquids. It should not be added to hot beverages because heat destroys glutamine.

    Precautions:

    Because of the potential for side effects and interactions with medications, you should take dietary supplements should be taken only under the supervision of a knowledgeable health care provider.
    Glutamine appears to be safe in doses up to 14 g or higher per day, but you should only take doses this high under the supervision of a health care provider.
    Glutamine powder should not be added to hot beverages because heat destroys this amino acid. Glutamine supplements should also be kept in a dry location.
    People with kidney disease, liver disease, or Reye syndrome (a rare, sometimes fatal disease of childhood that is generally associated with aspirin use) should not take glutamine.
    Many elderly people have decreased kidney function and may need to reduce the dose of glutamine.
    Glutamine is different from glutamate (glutamic acid), monosodium glutamate, and gluten. Glutamine should not cause symptoms (headaches, facial pressure, tingling, or burning sensation) associated with sensitivity to monosodium glutamate. People who are gluten sensitive can use glutamine without problems. However, some people may be sensitive to glutamine, which is completely separate from gluten.

    Possible Interactions:

    If you are currently being treated with any of the following medications, you should not use glutamine supplements without first talking to your health care provider.
    Cancer therapy
    -- Some people suggest that glutamine may increase the effectiveness and reduce the side effects of chemotherapy treatments with doxorubicin, methotrexate, and 5-fluorouracil in people with colon cancer. Preliminary clinical studies suggest that glutamine supplements may prevent nerve damage associated with a medication called paclitaxel, used for breast and other types of cancers.
    However, laboratory studies suggest that glutamine may actually stimulate growth of tumors. Much more research is needed before it is known whether it is safe to use glutamine if you have cancer. If you are receiving chemotherapy, you should never add supplements to your regimen without consulting your physician.



    Aussie, age 57
    1987 CIN 111. Cervix lasered, no further problems.

    Dx Peripheral T Cell Lymphoma stage 2B bulky, aggressive Dec/09.
    6 chop14 and Neulasta.
    Clean PET April/10, 18 rads 36gy mop up. All done May 2010
    Iffy scan Nov. 2011.
    Scan Feb 2012 .still in remission.
    Still NED Nov 2012. On to yearly bloods now.

    May/2012. U/sound, thyroid scan, FNB. Benign adenoma. A lump in otherwords, nodule if you wish to be specific.

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  7. #7
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    I obtained an article published Sept 2011 in Clinical Pharmacology & Therapeutics...."Chemotherapy-Induced Peripheral Neuropathy: Prevention and Treatment" It outlines a number of potential interventions which based on small trials, seem promissing. Glutamine is one such supplement. There seems to be a lot written on glutamine, one example being the post above by Didee. Other possible interventions include CaMg infusion, which is something the doctor would do. Alpha lipoic acid and L-carnitine were mentioned as possibilities.

    Part of the articles concluding startement:

    "Currently, there are no agents with proven efficacy in preventing CIPN. Ca/Mg infusions for oxaliplatin-associated neuropathy, glutathione, ALC, α-lipoic acid, and glutamine have been associated with positive preliminary data but require further investigation."

  8. #8
    Administrator Top User Didee's Avatar
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    It would be wonderful if something could be found to help. So many have problems with it.
    Aussie, age 57
    1987 CIN 111. Cervix lasered, no further problems.

    Dx Peripheral T Cell Lymphoma stage 2B bulky, aggressive Dec/09.
    6 chop14 and Neulasta.
    Clean PET April/10, 18 rads 36gy mop up. All done May 2010
    Iffy scan Nov. 2011.
    Scan Feb 2012 .still in remission.
    Still NED Nov 2012. On to yearly bloods now.

    May/2012. U/sound, thyroid scan, FNB. Benign adenoma. A lump in otherwords, nodule if you wish to be specific.

    CancerForums User Policy

    http://www.cancerforums.net/threads/...picture-policy

    Out of all the things I have lost, I miss my mind the most.

  9. #9
    Top User DulcimerGal's Avatar
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    This Tuesday my Oncologist will be giving me calcium and glutamine infusion to see if it helps my neuropathy. It will be round 11 of 12. He had agreed to do it last session but the pharmacy did not have the calcium infusion and he wants to do both together. So it is supposed to be ordered for me this week. We will see. I am ready to quit it hurts so bad...but I'll give it a try if they do these infusions, just to see if it helps as I really want to Go The Distance.

    I'll let you all know how it goes. The Gabapentim prescribed last time takes the edge off so I can sleep, but last night I had a nightmare....so not sure I will take it tonight.

    DulcimerGal
    Rectal Cancer diagnosed Valentines Day 2008 - stage 3
    Finished 6 weeks of radiation and chemo 4/23/08
    Surgery to remove tumor - June 18th 2008
    Colostomy Reversal August 20th 2008
    Chemotherapy 5 months (Xeloda) finished Christmas 2008
    Local recurrence found May 2011
    Permanent colostomy and salvage APR surgery June 3rd 2011
    Stage 3C - 4 of 12 lymph nodes involved
    Finished 12 treatments of FOLFOX 6 - January 17th 2012 - Happy Dance!
    March 2012 - clean CAT Scan
    August 2012 - Cancer moves to stage 4
    CAT shows cancer cells implanted in pelvis/abdomen
    September - PET shows lung lesion 1.4 x 1 cm
    October - begin sessions of Folfiri.3 - Avastin, Irotecan, 5fu
    February 2013 - tumors shrinking, continuing biweekly chemo
    April 2013 finished all 12 Folfiri treatments, scan shows only lung lesions
    May - October Blessed chemo break!
    October 2013, scan shows more growth in pelvis and lungs
    Continue with biweekly Folfiri.3 - Avastin, Irotecan, leucovorin, 5fu
    April 2014 CAT scan shows tumors in liver
    June 2014 More tumor growth, stop Irinotecan cocktail after two years
    June 2014 Begin Regorafenib (Stivarga)

 
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