Neuropathy and Oxaliplatin Revisited

2

Comments

  • pete43lost_at_sea
    pete43lost_at_sea Member Posts: 3,900 Member
    #22
    ron50 said:

    Who knows
    I have just come from my rheumatologist. There is a conflict with the nephrologist. My joints are an absolute mess, everything from hands to toes have swollen and inflamed joints. My nephrologist needs me to do a 24 hr urine collection to monitor my protein loss. If it has risen he wants to do another kidney biopsy. He thinks I may have some sort of vasculitis. Trouble is my rheumy wants me to start Imuran for my psoriatic arthritis. The problem being that Imuran is also used to treat renal vasculitis. If I start the drug it may stuff things up for the neph. So I remain in pain and limbo. Imuran is a front line transplant drug to stop rejection. I told my rheum that the immuno-suppressants have cost me several teeth already and also that a spot had come up on my face in the last few months. He took one look and said it has to come of asap. I'm sick of all of it. Ron.

    i know
    hi ron,

    i know one thing ron, you deserve a break, it just sux you going from one thing to another.

    its just a suggestion but have you considered a plant based diet for say 6 months to see if all the claims that helps many medical problems is true. its most peoples last option, but the stories i have heard are promising. just throwing it out there.

    i just hope whatever you try really helps.

    hugs,
    pete
  • Unknown
    Unknown
    #23
    ron50 said:

    Who knows
    I have just come from my rheumatologist. There is a conflict with the nephrologist. My joints are an absolute mess, everything from hands to toes have swollen and inflamed joints. My nephrologist needs me to do a 24 hr urine collection to monitor my protein loss. If it has risen he wants to do another kidney biopsy. He thinks I may have some sort of vasculitis. Trouble is my rheumy wants me to start Imuran for my psoriatic arthritis. The problem being that Imuran is also used to treat renal vasculitis. If I start the drug it may stuff things up for the neph. So I remain in pain and limbo. Imuran is a front line transplant drug to stop rejection. I told my rheum that the immuno-suppressants have cost me several teeth already and also that a spot had come up on my face in the last few months. He took one look and said it has to come of asap. I'm sick of all of it. Ron.

    This comment has been removed by the Moderator
  • pete43lost_at_sea
    pete43lost_at_sea Member Posts: 3,900 Member
    #24
    unknown said:

    This comment has been removed by the Moderator

    ala
    dear gracie,

    thanks for mentioninh ala, it slipped off my radar re neuropathy.

    from the net.
    Alpha lipoic acid is made by the body and can be found in very small amounts in foods such as spinach, broccoli, peas, Brewer's yeast, brussel sprouts, rice bran, and organ meats. Alpha lipoic acid supplements are available in capsule form at health food stores, some drugstores, and online. For maximum absorption, the supplements should be taken on an empty stomach.

    based on these facts i am glad my daily veg juice has broccoli and sometimes spinach and or brussel sprouts.

    had my reflexology today, and my feet were significantly more sensitive.

    so its good news for my neuropathy, still not gone but hands almost normal again and feet
    well livable.

    hugs,
    pete
  • westie66
    westie66 Member Posts: 642
    #25
    pete43lost_at_sea said:

    hi cheryl
    glad you kept this neuropathy theme going.

    i just wanted to share some good news that my fingers and feet are noticably better.

    its such a relief.

    not sure whats helped, but i will stay on my diet, juicing, tea and supplements.

    i hope yours improves aqs well.

    hugs,
    pete

    Allergic Response to Oxaliplatin
    Hi Pete and Kathryn and all: You know, that is what I was beginning to wonder. The nurse I have once a week thought it sounded almost like a seizure response. I'm so glad you warned me. I'm in Toronto right now getting my little dog but I'll phone my oncologist nurse tomorrow and tell her. I had thought of asking the oncologist to slow down the infusion next Tuesday (but I have to pay $100 an hour for the privilege as well as the chemical so was trying to avoid it!). I'll alert the oncologist on Monday and get him to warn the chemo nurses on Tuesday. I do have alpha linoleic acid so will take that and I'm taking 5 grams of L-Glutamine. The neuropathy has abated a lot now thankfully but the diarrhea has not (from the irenotecan). Even lomotil is not helping much! Another 10 lbs lost.
    Thanks, all!
    Cheryl
  • abrub
    abrub Member Posts: 2,174 Member
    #26
    westie66 said:

    Allergic Response to Oxaliplatin
    Hi Pete and Kathryn and all: You know, that is what I was beginning to wonder. The nurse I have once a week thought it sounded almost like a seizure response. I'm so glad you warned me. I'm in Toronto right now getting my little dog but I'll phone my oncologist nurse tomorrow and tell her. I had thought of asking the oncologist to slow down the infusion next Tuesday (but I have to pay $100 an hour for the privilege as well as the chemical so was trying to avoid it!). I'll alert the oncologist on Monday and get him to warn the chemo nurses on Tuesday. I do have alpha linoleic acid so will take that and I'm taking 5 grams of L-Glutamine. The neuropathy has abated a lot now thankfully but the diarrhea has not (from the irenotecan). Even lomotil is not helping much! Another 10 lbs lost.
    Thanks, all!
    Cheryl

    Alpha LIiPOIC Acid
    Cheryl,

    Just to let you know, the recommendation is for Alpha LiPoic acid, not Alpha LiNoic acid. Different chemicals.

    The Alpha Lipoic Acid has helped me as well. I was up to 1200 mg/day (600 twice a day - with meals worked best for me.)

    Alice
  • marqimark
    marqimark Member Posts: 242 Member
    #27
    neuropathy/oxy
    Well after reading this thread, I realise I found this site too late. My last treatment was in Oct, 2010.

    I took six or seven meds for nausea, one for diarrhea, one for hiccups, neulasta shots, one for heartburn, prescrition for potassium, a cocktail med for mouth sores, meds for thrush, pain meds because of the car wreck, Rx for sleeping, but nothing for the prevention of neuropathy.

    Now my hands and feet are numb and painful 24/7.
    I also can't feel my flow when I urinate and sexual sensations are numbed.
    I have lost sensation in my anal area, really wierd there.
    Flare ups as I call them, cause the neuropathy to became really uncomfortable.

    Ocassionaly, well today was the second time, my upper lip swells and reddens and my whole body feels rashy. Never happened before chemo, but I could have developed an allergy to something that I have always tolerated in the past I guess.

    I will ask the doc for gabapentin and try the alpha lipo.
    Should I try the Gluten at this late date??

    Thanks for all the reads

    Mark
  • abrub
    abrub Member Posts: 2,174 Member
    #28
    marqimark said:

    neuropathy/oxy
    Well after reading this thread, I realise I found this site too late. My last treatment was in Oct, 2010.

    I took six or seven meds for nausea, one for diarrhea, one for hiccups, neulasta shots, one for heartburn, prescrition for potassium, a cocktail med for mouth sores, meds for thrush, pain meds because of the car wreck, Rx for sleeping, but nothing for the prevention of neuropathy.

    Now my hands and feet are numb and painful 24/7.
    I also can't feel my flow when I urinate and sexual sensations are numbed.
    I have lost sensation in my anal area, really wierd there.
    Flare ups as I call them, cause the neuropathy to became really uncomfortable.

    Ocassionaly, well today was the second time, my upper lip swells and reddens and my whole body feels rashy. Never happened before chemo, but I could have developed an allergy to something that I have always tolerated in the past I guess.

    I will ask the doc for gabapentin and try the alpha lipo.
    Should I try the Gluten at this late date??

    Thanks for all the reads

    Mark

    I started AlphaLipoicAcid and Mag Citrate18 months post-chemo
    and it was helpful. I was advised to add the Glutamine 2+ years post-chemo.

    It's worth a try.
  • Unknown
    Unknown
    #29
    marqimark said:

    neuropathy/oxy
    Well after reading this thread, I realise I found this site too late. My last treatment was in Oct, 2010.

    I took six or seven meds for nausea, one for diarrhea, one for hiccups, neulasta shots, one for heartburn, prescrition for potassium, a cocktail med for mouth sores, meds for thrush, pain meds because of the car wreck, Rx for sleeping, but nothing for the prevention of neuropathy.

    Now my hands and feet are numb and painful 24/7.
    I also can't feel my flow when I urinate and sexual sensations are numbed.
    I have lost sensation in my anal area, really wierd there.
    Flare ups as I call them, cause the neuropathy to became really uncomfortable.

    Ocassionaly, well today was the second time, my upper lip swells and reddens and my whole body feels rashy. Never happened before chemo, but I could have developed an allergy to something that I have always tolerated in the past I guess.

    I will ask the doc for gabapentin and try the alpha lipo.
    Should I try the Gluten at this late date??

    Thanks for all the reads

    Mark

    This comment has been removed by the Moderator
  • pete43lost_at_sea
    pete43lost_at_sea Member Posts: 3,900 Member
    #30
    marqimark said:

    neuropathy/oxy
    Well after reading this thread, I realise I found this site too late. My last treatment was in Oct, 2010.

    I took six or seven meds for nausea, one for diarrhea, one for hiccups, neulasta shots, one for heartburn, prescrition for potassium, a cocktail med for mouth sores, meds for thrush, pain meds because of the car wreck, Rx for sleeping, but nothing for the prevention of neuropathy.

    Now my hands and feet are numb and painful 24/7.
    I also can't feel my flow when I urinate and sexual sensations are numbed.
    I have lost sensation in my anal area, really wierd there.
    Flare ups as I call them, cause the neuropathy to became really uncomfortable.

    Ocassionaly, well today was the second time, my upper lip swells and reddens and my whole body feels rashy. Never happened before chemo, but I could have developed an allergy to something that I have always tolerated in the past I guess.

    I will ask the doc for gabapentin and try the alpha lipo.
    Should I try the Gluten at this late date??

    Thanks for all the reads

    Mark

    sorry you found us late
    dear mark,

    i too had the sex and nerve thing around the bum. most disconcerting.
    not sure if its neuropathy or issues with postop stuff or even chemo.

    your body has been hammered. mine too. i mentioned not being hard enough to my tcm doctor and he said that for what i have been through chemo/rad operation six months folfox i am lucky to have an erection at all. and for some patients it can take 18 months post chemo for sexual performance to return. i said gee thanks. i have always consider a healthy sex life to reflect how my bodies going at any time with treatments. well for me personally.

    for neuropathy i am doing vit b complex, fish oil, l-glutamine, alpha lipo, mitolift, l argarentine, cal/mag. i hate neuropathy. heaps of other supplements.

    my neuropathy has been getting better. its two months post chemo for me.

    try reflexology, its helped me to stimulate the blood flow in my feet.

    just goodluck coping with the lefterovers.

    hugs,
    pete
  • westie66
    westie66 Member Posts: 642
    #31
    unknown said:

    This comment has been removed by the Moderator

    Neuropathy
    Hi all: I am still amazed that neuropathy seems to be the biggest side effect complaint from the Oxaliplatin and there is still very little research on it!!!!!!! I don't get it. The brochure I have from the company that makes it says right there that this is a big side effect but don't give any advice on what to do about it other than wear gloves when handling cold things, drink stuff at room temperature (tough when it is over 100 today in LOndon ON - I so want ice!), feeling goes away in awhile, well, maybe not in some people, etc. etc. etc. Maybe we should all write the drug company that makes it and plead with them to come up with relief (and make them look like heroes).
    I'm going to slug down 5 grams of L-Glutamine with a side of Alpha Lin......., B6, and cal/mag and do that every day. Lily, who reports on the gallbladder cancer discussion board, got severe neuropathy when she did the cisplatin/gemzar chemo 5 years ago and still takes L-Glutamine but in tablet form. Helps her even now.
    I'm going to go and breathe deeply for awhile to let out the stress from hearing about all of us that are suffering with this side effect. Then I'm going to write the drug company.
    Cheryl
  • pete43lost_at_sea
    pete43lost_at_sea Member Posts: 3,900 Member
    #32
    westie66 said:

    Neuropathy
    Hi all: I am still amazed that neuropathy seems to be the biggest side effect complaint from the Oxaliplatin and there is still very little research on it!!!!!!! I don't get it. The brochure I have from the company that makes it says right there that this is a big side effect but don't give any advice on what to do about it other than wear gloves when handling cold things, drink stuff at room temperature (tough when it is over 100 today in LOndon ON - I so want ice!), feeling goes away in awhile, well, maybe not in some people, etc. etc. etc. Maybe we should all write the drug company that makes it and plead with them to come up with relief (and make them look like heroes).
    I'm going to slug down 5 grams of L-Glutamine with a side of Alpha Lin......., B6, and cal/mag and do that every day. Lily, who reports on the gallbladder cancer discussion board, got severe neuropathy when she did the cisplatin/gemzar chemo 5 years ago and still takes L-Glutamine but in tablet form. Helps her even now.
    I'm going to go and breathe deeply for awhile to let out the stress from hearing about all of us that are suffering with this side effect. Then I'm going to write the drug company.
    Cheryl

    some studies not the required big ones
    dear cheryl,

    this is interesting

    http://www.mcvitamins.com/Chemotherapy-neuropathy.htm

    hugs,

    pete
  • pete43lost_at_sea
    pete43lost_at_sea Member Posts: 3,900 Member
    #33
    westie66 said:

    Neuropathy
    Hi all: I am still amazed that neuropathy seems to be the biggest side effect complaint from the Oxaliplatin and there is still very little research on it!!!!!!! I don't get it. The brochure I have from the company that makes it says right there that this is a big side effect but don't give any advice on what to do about it other than wear gloves when handling cold things, drink stuff at room temperature (tough when it is over 100 today in LOndon ON - I so want ice!), feeling goes away in awhile, well, maybe not in some people, etc. etc. etc. Maybe we should all write the drug company that makes it and plead with them to come up with relief (and make them look like heroes).
    I'm going to slug down 5 grams of L-Glutamine with a side of Alpha Lin......., B6, and cal/mag and do that every day. Lily, who reports on the gallbladder cancer discussion board, got severe neuropathy when she did the cisplatin/gemzar chemo 5 years ago and still takes L-Glutamine but in tablet form. Helps her even now.
    I'm going to go and breathe deeply for awhile to let out the stress from hearing about all of us that are suffering with this side effect. Then I'm going to write the drug company.
    Cheryl

    some studies not the required big ones
    dear cheryl,

    this is interesting

    http://www.mcvitamins.com/Chemotherapy-neuropathy.htm

    hugs,

    pete
  • westie66
    westie66 Member Posts: 642
    #34
    pete43lost_at_sea said:

    some studies not the required big ones
    dear cheryl,

    this is interesting

    http://www.mcvitamins.com/Chemotherapy-neuropathy.htm

    hugs,

    pete

    Neuropathy
    Hi: Thanks, Pete. I'm going to read it right away. I now have the address of the oxaliplatin maker here in Canada and I'm going to write them, no email them. This is too important.
    Cheryl
  • pete43lost_at_sea
    pete43lost_at_sea Member Posts: 3,900 Member
    #35
    westie66 said:

    Neuropathy
    Hi: Thanks, Pete. I'm going to read it right away. I now have the address of the oxaliplatin maker here in Canada and I'm going to write them, no email them. This is too important.
    Cheryl

    go girl go
    i'd love to know what they say.
    hugs,
    pete
  • emtwoods
    emtwoods Member Posts: 37 Member
    #36
    Help
    OK I am so confused my husband gets his first does of FolFox tomorrow and he already suffers from neuropathy so now it is going to get worse? What should he take, it sounds like nothing will be sugested.
  • pete43lost_at_sea
    pete43lost_at_sea Member Posts: 3,900 Member
    #37
    emtwoods said:

    Help
    OK I am so confused my husband gets his first does of FolFox tomorrow and he already suffers from neuropathy so now it is going to get worse? What should he take, it sounds like nothing will be sugested.

    first ask your onc about neuropathy
    just search on peripheral neuropathy pete in colorectal.
    we have had many good discussions on this.
    different people mention different supplements.
    sometimes we have links to journals.

    you have time to research and read and ask.
    with folfox the neuropathy is cumulative. but it takes months normally for it to show.

    hugs.
    pete
  • westie66
    westie66 Member Posts: 642
    #38
    pete43lost_at_sea said:

    first ask your onc about neuropathy
    just search on peripheral neuropathy pete in colorectal.
    we have had many good discussions on this.
    different people mention different supplements.
    sometimes we have links to journals.

    you have time to research and read and ask.
    with folfox the neuropathy is cumulative. but it takes months normally for it to show.

    hugs.
    pete

    Neuropathy and Oxaliplatin
    Hi all: And sometimes you get it right away like me. Anyways, I've downloaded the product manifesto (66 pages long!) and I'm going to scour it for all the neuropathy stuff. They don't accept emails on reactions to products but there is a 1-800 phone number I'm going to call on Monday when they open. In Canada, the company is Sanofi-Aventis Canada and oxaliplatin goes by the name Eloxatin. Good advice to talk about it with your oncologist right off the bat, especially if he already has neuropathy (from diabetes?). Unfortunately my oncologist hasn't seen too much problem with it but the oncologist nurse had.
    Yesterday morning the sink filled up with hair - devastating! Today bought a wig!
    I suspect I am seeing these side effects because it has piled up on top of the cisplatin I had for 6 months just previous to this chemical stew.
    Cheryl
  • marqimark
    marqimark Member Posts: 242 Member
    #39
    westie66 said:

    Neuropathy and Oxaliplatin
    Hi all: And sometimes you get it right away like me. Anyways, I've downloaded the product manifesto (66 pages long!) and I'm going to scour it for all the neuropathy stuff. They don't accept emails on reactions to products but there is a 1-800 phone number I'm going to call on Monday when they open. In Canada, the company is Sanofi-Aventis Canada and oxaliplatin goes by the name Eloxatin. Good advice to talk about it with your oncologist right off the bat, especially if he already has neuropathy (from diabetes?). Unfortunately my oncologist hasn't seen too much problem with it but the oncologist nurse had.
    Yesterday morning the sink filled up with hair - devastating! Today bought a wig!
    I suspect I am seeing these side effects because it has piled up on top of the cisplatin I had for 6 months just previous to this chemical stew.
    Cheryl

    devastating!
    HUGS! HUGS!!!

    The ONLY side effect of OXAL I did not have was hair loss.
    Still had to shave my head every day.

    You will make it through the treatments.

    Had a co-worker today say he could not go through what I went through until he saw what a comeback I have made physically.
    I guess I looked pretty bad.....


    Prayers

    Mark
  • westie66
    westie66 Member Posts: 642
    #40
    marqimark said:

    devastating!
    HUGS! HUGS!!!

    The ONLY side effect of OXAL I did not have was hair loss.
    Still had to shave my head every day.

    You will make it through the treatments.

    Had a co-worker today say he could not go through what I went through until he saw what a comeback I have made physically.
    I guess I looked pretty bad.....


    Prayers

    Mark

    Oxaliplatin
    Hi Mark et al: I suspect my hair loss (breakage really) was cumulative because of the 12 weeks of cisplatin/gemcitibine I had previous to this folfoxfiri treatment regime. Yup, you bet I'll make it through the treatments. Once you get a side effect, there is always a pattern and always a way to alleviate the worst of it. I received a report from the Canadian company that manufactures the oxaliplatin (Eloxatin in canada). 92% of patients in clinical trials got some form of neuropathy, about 10% of them serious problems. Severe diarrhea was a common side effect because all of the chemicals used in folfoxfiri cause it. Fatigue was common (44%) but mostly in women. To me the scariest is the neuropathy. About 20 pages of the report was devoted to it. They have done no research on ways to alleviate it. They caution throughout that it can be long-lasting.
    If anyone wants me to email it to them, please email me and I'll send it.
    Thanks for the encouragement! This too shall pass!
    Cheryl
  • plh4gail
    plh4gail Member Posts: 1,238 Member
    #41
    Ohhh Cheryl. I'm so sorry. I
    Ohhh Cheryl. I'm so sorry. I have been off the Oxy since the end of February and my feet tingles really didn't get bad until after I got off it. Weird I know. My onc didn't like the symptoms I was having and switched me at 6 treatments to Folfiri. Now those darn lower extremity symptoms go slightly up my calves but I'm dealing with it like you seem to be. Still stiff as heck in all my joints tho.

    Gail

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