neuropathy good news and bad news DON'T READ THIS IF YOUR HEAD IS IN THE SAND!!

2

Comments

  • herdizziness
    herdizziness Member Posts: 3,624 Member
    Sundanceh said:

    43
    My head is never in the sand:)

    For those starting out with Oxy, this may be a windfall. For those, like yourself, who have completed treatment and are going to try it, we'll have to see how you fare with it.

    Luckily, I got off the train at #8 and was spared permanent neuropathy, minor but nothing major that I can tell. I know Magnesium Sulfate helped with my neuropathy and cold sensations and really turned my treatment program around.

    I'm a quality of life guy and don't mind conceding a few things, but permanent nerve damage would have upset me to no end.

    Oh
    And yes, as Craig can tell you, my head gets in the sand because it feels safe there on occasion, but he makes me pull my head up, stand strong and go on.
    Winter Marie
  • herdizziness
    herdizziness Member Posts: 3,624 Member
    PhillieG said:

    Janie
    It's more of a proceed with caution. I don't think it's wise to jump into anything without knowing what can happen. I would HOPE your Onc would know, it is after all their job! I know what you mean about the reports. They are written by people for people who know how to decipher it. They can be like legal documents.

    As with anything, especially things that are health oriented, ask questions and don't just figure "oh well, you're my doctor so you know best". They may or may not know best. You often have to be your own advocate. Be informed. I almost always had someone with me and I always came prepared with a list of questions. My doctors do take the time to answer them. I also know better than to ask them things that I know they can not answer like "how much longer do I have doc?" or "after this round will it all be gone?". You live until you die and it's gone when it's gone.

    What?
    Where the heck is The Madonna?
  • lisa42
    lisa42 Member Posts: 3,625 Member
    janie1 said:

    correction
    On my first post....i meant to say...What "other" chemo drugs cause neuropathy...or is oxyalaplatin the big one? thanks

    drugs w/ platinum
    Janie,

    There are a few chemo drugs with the metal platinum in it- oxaliplatin, cisplatin, carboplatin. Cisplatin and carboplatin are not normally used for colorectal cancer, but I had the "pleasure" of having 4 weeks of cisplatin when I was getting radiation on my rectal tumor. The cisplatin seemed even worse to me than the oxaliplatin in regards to neuropathy. That may be a cumulative effect, as I had 10 cycles of Folfox that has oxaliplatin and then a month later started the radiation with cisplatin. At the fourth week, the neuropathy was terrible and my onc changed it to carboplatin for the remaining two weeks & that was actually better. (I've since found out most oncs use 5FU during radiation & i have no idea why mine used the cisplatin/carboplatin).

    I am now on Gemzar/5FU/Avastin. Gemzar (gemcitabine) is also a chemo that is not normally used for colorectal cancer (I believe it's for kidney cancer and some forms of breast cancer)- I'm on it because I've used up all the approved chemos for colorectal cancer and we had to find something else to put me on. Anyhow, I started having more neuropathy again since being on the Gemzar. I looked it up and it's supposed to be a rare side effect, but I'm getting it. So, I'm again taking glutamine, alpha lipoic acid, and vitamin B-6 to help combat the neuropathy.

    The other approved chemos for colorectal cancer- irinotecan, Avastin, 5FU, Xeloda, Erbitux, Vectibix- I don't believe any of them should cause neuropathy.
    Actually, I did experience some neuropathy while on Xeloda, but that's not due to the drug itself- it was due to severe peeling of my fingertips and feet (known as the hand-foot syndrome) & my nerves in my fingertips were affected because so much skin was peeled away. I then switched from Xeloda to 5FU (while taking them with Gemzar at the time) & the hand-foot syndrome got a little better & my feeling in the fingertips came back.

    Lisa
  • ron50
    ron50 Member Posts: 1,723 Member
    I had no initial problems
    But 13 plus years on I can't feel my feet ,lower legs or left hand. I had 48 sessions of 5Fu and on 24 of those weeks I took 9 tablets of levamisole. Neither of these drugs is associated with peripheral neuropathy. My medical file states that my naturopathy is idiopathic which I believe means of an unknown cause. My rheumatologist is an ex oncologist and believes my neuropathy is definitely chemo related but he does not particularly care as he contends that once the sensory nerves are damaged sensation will not return. He has proved that by putting me on an increasing dose of lyrica,at 375mg daily it made little or no difference to the burning etc.He tried me on endep which is a tricyclic anti-depressant which also acts as a neurological anaelgesic. It did nothing except freak me out.
    In my opinnion the treatment of cancer fails to provide a wholistic approach to patient welfare. The diagnosis is good ,the treatment is comprehensive but after five years nobody gives a toss. Iam curious if not surprised as to why no medical entity has asked the question 'Mouse 23 why are you still alive'. I was an aggressive stage 3c tumour into 6 lymph nodes and in the words of my surgeon "frightfully aggressive". I have had a lot of friends and acquaintences who were staged far lower than me who are no longer here.
    I am not craving attention and I have had enough of doctors but if some medicos aked me to participate in tests that may help other sufferers I would be happy to. When I was treated with chemo neither my oncologist or surgeon thought it would work. Why has it.Perhaps I have a survival gene.
    Apart from the why question I have to ask another. Having spent some much time ,effort and money on getting me to thirteen plus years why not put a little extra effort in to trying to stabalise my quality of life but honestly the attitude that I most find in doctors is you have survived cancer,what more do you expect. My answer to that is 'why did i @###$$$#@ bother. End of Vent.Ron.
  • PhillieG
    PhillieG Member Posts: 4,866 Member

    Oh
    And yes, as Craig can tell you, my head gets in the sand because it feels safe there on occasion, but he makes me pull my head up, stand strong and go on.
    Winter Marie

    Head in the sand
    I often feel ostrich-sized on here but that doesn't really count.
    Plus, my knees bend backwards, not forwards...

    PS: The Madonna (as opposed to Madonna, will be back in the rotation at a later date)
    -p
  • Scambuster
    Scambuster Member Posts: 973
    ron50 said:

    I had no initial problems
    But 13 plus years on I can't feel my feet ,lower legs or left hand. I had 48 sessions of 5Fu and on 24 of those weeks I took 9 tablets of levamisole. Neither of these drugs is associated with peripheral neuropathy. My medical file states that my naturopathy is idiopathic which I believe means of an unknown cause. My rheumatologist is an ex oncologist and believes my neuropathy is definitely chemo related but he does not particularly care as he contends that once the sensory nerves are damaged sensation will not return. He has proved that by putting me on an increasing dose of lyrica,at 375mg daily it made little or no difference to the burning etc.He tried me on endep which is a tricyclic anti-depressant which also acts as a neurological anaelgesic. It did nothing except freak me out.
    In my opinnion the treatment of cancer fails to provide a wholistic approach to patient welfare. The diagnosis is good ,the treatment is comprehensive but after five years nobody gives a toss. Iam curious if not surprised as to why no medical entity has asked the question 'Mouse 23 why are you still alive'. I was an aggressive stage 3c tumour into 6 lymph nodes and in the words of my surgeon "frightfully aggressive". I have had a lot of friends and acquaintences who were staged far lower than me who are no longer here.
    I am not craving attention and I have had enough of doctors but if some medicos aked me to participate in tests that may help other sufferers I would be happy to. When I was treated with chemo neither my oncologist or surgeon thought it would work. Why has it.Perhaps I have a survival gene.
    Apart from the why question I have to ask another. Having spent some much time ,effort and money on getting me to thirteen plus years why not put a little extra effort in to trying to stabalise my quality of life but honestly the attitude that I most find in doctors is you have survived cancer,what more do you expect. My answer to that is 'why did i @###$$$#@ bother. End of Vent.Ron.

    Powder form
    Many folk on the H&N board use L -Glutamine for several reasons. It helps neutralize burning in the mouth from Radiation, helps heal the mucosa and helps maintain muscle tissue during weight loss.

    I would assume that the 'healing the mucosa' aspect would be of interest to those here who have had surgery ??

    It is commonly used by weight lifters/body builder in larger quantities. If you do decide to use it, the powder form is best and it dissolves in water or juice, and is tasteless. Very easy to include in your diet.

    As for 'The Doctors should tell you', well I think we could fill dozens of boards on 'what the Doctors DID NOT tell us, and should have'.

    If they don;t know and don;t tell what will/could happen regarding side effects and permanent damage from their work in any other industry, they would be fired, sued, or sent packing. This is endemic in the Cancer industry. One obvious reason is if you tell your new patient all the bad stuff, they will be very upset and also they may decided NOT to undergo treatment.

    The more I study, the more I see alternatives and complimentary therapies that can be used to mitigate side effects and toxicity, increase efficacy of Chemo and radiation therapies, leaving us with better outcomes and quality of life. This is far far from a perfect science or art by any stretch.

    Scam
  • pete43lost_at_sea
    pete43lost_at_sea Member Posts: 3,900 Member
    ron50 said:

    I had no initial problems
    But 13 plus years on I can't feel my feet ,lower legs or left hand. I had 48 sessions of 5Fu and on 24 of those weeks I took 9 tablets of levamisole. Neither of these drugs is associated with peripheral neuropathy. My medical file states that my naturopathy is idiopathic which I believe means of an unknown cause. My rheumatologist is an ex oncologist and believes my neuropathy is definitely chemo related but he does not particularly care as he contends that once the sensory nerves are damaged sensation will not return. He has proved that by putting me on an increasing dose of lyrica,at 375mg daily it made little or no difference to the burning etc.He tried me on endep which is a tricyclic anti-depressant which also acts as a neurological anaelgesic. It did nothing except freak me out.
    In my opinnion the treatment of cancer fails to provide a wholistic approach to patient welfare. The diagnosis is good ,the treatment is comprehensive but after five years nobody gives a toss. Iam curious if not surprised as to why no medical entity has asked the question 'Mouse 23 why are you still alive'. I was an aggressive stage 3c tumour into 6 lymph nodes and in the words of my surgeon "frightfully aggressive". I have had a lot of friends and acquaintences who were staged far lower than me who are no longer here.
    I am not craving attention and I have had enough of doctors but if some medicos aked me to participate in tests that may help other sufferers I would be happy to. When I was treated with chemo neither my oncologist or surgeon thought it would work. Why has it.Perhaps I have a survival gene.
    Apart from the why question I have to ask another. Having spent some much time ,effort and money on getting me to thirteen plus years why not put a little extra effort in to trying to stabalise my quality of life but honestly the attitude that I most find in doctors is you have survived cancer,what more do you expect. My answer to that is 'why did i @###$$$#@ bother. End of Vent.Ron.

    thanks mouse 23 glad your here
    hi ron,
    your story is brave and sad. its good to vent.
    i fully agree with your comments re after care.
    hugs,
    pete
  • pete43lost_at_sea
    pete43lost_at_sea Member Posts: 3,900 Member

    Powder form
    Many folk on the H&N board use L -Glutamine for several reasons. It helps neutralize burning in the mouth from Radiation, helps heal the mucosa and helps maintain muscle tissue during weight loss.

    I would assume that the 'healing the mucosa' aspect would be of interest to those here who have had surgery ??

    It is commonly used by weight lifters/body builder in larger quantities. If you do decide to use it, the powder form is best and it dissolves in water or juice, and is tasteless. Very easy to include in your diet.

    As for 'The Doctors should tell you', well I think we could fill dozens of boards on 'what the Doctors DID NOT tell us, and should have'.

    If they don;t know and don;t tell what will/could happen regarding side effects and permanent damage from their work in any other industry, they would be fired, sued, or sent packing. This is endemic in the Cancer industry. One obvious reason is if you tell your new patient all the bad stuff, they will be very upset and also they may decided NOT to undergo treatment.

    The more I study, the more I see alternatives and complimentary therapies that can be used to mitigate side effects and toxicity, increase efficacy of Chemo and radiation therapies, leaving us with better outcomes and quality of life. This is far far from a perfect science or art by any stretch.

    Scam

    thanks scam
    your comments and support are priceless.
    off to the weight lifting store.
    hugs,
    pete
  • pete43lost_at_sea
    pete43lost_at_sea Member Posts: 3,900 Member
    TMac52 said:

    OXY
    I did 6 treatments of post op oxy, 8 treatments total, the last 2 without the oxy as the burning in my feet started to keep me from sleeping. My feet got much worse after I finished the treatments. It's been 2 months now and my feet are so sore every day. I just started to take nurontin it has helped a little but not much. I saw my ONC today and was told this could last a year and theres a chance it could be permanent. God I hope not!!!
    It is very painfull and is preventing me from going for walks. I was walking during chemo and now I cant :(. I'm pretty sure I'm not going to die from foot pain and there is no evidence of cancer left in my body.........so if thats the price I pay to be alive I'll take it.
    Love to all semi colons!!!
    Tom

    thanks tom
    sorry the neuropathy has hit you so bad.
    hugs,
    pete
  • pete43lost_at_sea
    pete43lost_at_sea Member Posts: 3,900 Member

    Like Craig
    Like Craig, I got the mag sulfate from very beginning, my ability to drink cold things only progressed for me. First time it was 6 days, pretty soon it was 9 to 10 days before I could drink cold (for someone like me, who loves their frozen coke a colas this was devastating, however the weight loss from being denied my colas was nice).
    I developed neuropathy in my finger tips and feet. It is gone from my fingers (thank you the Gods that be)in my feet were a different story, I have despaired because I didn't feel they would return to normal, however, the feeling is coming back almost full force at long last. Happy Dance with footsie's that are almost normal and as a post note (well, sort of a post note, I'm editing, LOL)I never had pain in the toes or feet, just tingling type numbness, I think the mag sulfate helped in this matter.
    I consider myself one of the lucky ones!!!
    Winter Marie

    thanks winter
    i am glad you were lucky.
    hugs,
    pete
  • pete43lost_at_sea
    pete43lost_at_sea Member Posts: 3,900 Member

    I was told just about the same thing
    about folfox by 3 diffrent onc, at 3 different practices and different ages. Not the worse chemo, about coldness and touching, would not loss my hair, 12 cources, I was even offered a clinical trial as a Stage 111 which I refused. My point is that I did not research and did not know about this sight before I started treatment. So I believe if you are just starting, please do research and ask questions. Even if I had been told about the chances of neurapathy, I would have forged ahead.....now as I face a new stage 4 mets to liver, I am doing more research, but I still not sure the what the results will be. My husband is all rosy about the outcome, I tend to lean toward the what ifssssss......but we forge ahead a day at a time....and you can lose your hair and you can have neurapathy and lots of problems with the chemo. But I had two years with the problems and would do the same, but be more knowledgable.......Pat

    thanks pat
    i to forged ahead, its just the lack of support after the event thats sad.
    maybe let your husband be rosy,its better then him being sad.
    hugs,
    pete
  • Sonia32
    Sonia32 Member Posts: 1,071 Member

    thanks mouse 23 glad your here
    hi ron,
    your story is brave and sad. its good to vent.
    i fully agree with your comments re after care.
    hugs,
    pete

    Pete can I ask you an honest question?
    God forbid the cancer came, would you go through chemo again?

    Btw apologise if you have answered this before, I've missed it.

    Hugs
  • pete43lost_at_sea
    pete43lost_at_sea Member Posts: 3,900 Member
    Sonia32 said:

    Pete can I ask you an honest question?
    God forbid the cancer came, would you go through chemo again?

    Btw apologise if you have answered this before, I've missed it.

    Hugs

    if it was the best course of action, yes
    hi sonia,

    i am sentimentally attached to our beautiful world.
    my criticism with western onc is the lack of care managing side effects like liver damage and neuropathy.

    hugs,
    pete
  • pete43lost_at_sea
    pete43lost_at_sea Member Posts: 3,900 Member
    Sonia32 said:

    Pete can I ask you an honest question?
    God forbid the cancer came, would you go through chemo again?

    Btw apologise if you have answered this before, I've missed it.

    Hugs

    if it was the best course of action, yes
    hi sonia,

    i am sentimentally attached to our beautiful world.
    my criticism with western onc is the lack of care managing side effects like liver damage and neuropathy.

    hugs,
    pete
  • BettyJoM
    BettyJoM Member Posts: 82
    Oral glutamine
    Right in the beginning my oncologist told me to start taking oral glutamine powder.
    I bought several containers online but was unable to take it, it made me so sick to my stomach and increased my diarrhea. I gave it to the PA's at the cancer center so they could give it to other oncology patients because my onc prescribes it to all his patients on oxaliplatin.

    During my treatments I had an appt with my Rheumatologist, who I visit for an auto immune syndrome I have called CREST syndrome. He also was thinking I may have some carpal tunnel syndrome which may be exacerbating the numbness in my hands, so he ordered an EMG.

    The doctor who did the EMG found no carpal tunnel but he told me he had just heard about a study done on the effects of oxaliplatin and the use of vitamin E. He said it had good results with 1000iu a day. I mentioned it to my oncologist and he was unaware of that but told me to take it if I wanted.
    He also said for me to take 2 Caltrate and 2 81mg aspirin a day, that this was proven to improve odds for cancer returning.

    How can a person know what the heck to take already. Today is easy. Fasting since yesterday for a colonoscopy tomorrow. I will just be happy to get some food

    Betty Jo
  • pete43lost_at_sea
    pete43lost_at_sea Member Posts: 3,900 Member
    BettyJoM said:

    Oral glutamine
    Right in the beginning my oncologist told me to start taking oral glutamine powder.
    I bought several containers online but was unable to take it, it made me so sick to my stomach and increased my diarrhea. I gave it to the PA's at the cancer center so they could give it to other oncology patients because my onc prescribes it to all his patients on oxaliplatin.

    During my treatments I had an appt with my Rheumatologist, who I visit for an auto immune syndrome I have called CREST syndrome. He also was thinking I may have some carpal tunnel syndrome which may be exacerbating the numbness in my hands, so he ordered an EMG.

    The doctor who did the EMG found no carpal tunnel but he told me he had just heard about a study done on the effects of oxaliplatin and the use of vitamin E. He said it had good results with 1000iu a day. I mentioned it to my oncologist and he was unaware of that but told me to take it if I wanted.
    He also said for me to take 2 Caltrate and 2 81mg aspirin a day, that this was proven to improve odds for cancer returning.

    How can a person know what the heck to take already. Today is easy. Fasting since yesterday for a colonoscopy tomorrow. I will just be happy to get some food

    Betty Jo

    bingo THANKS BETTY JO that the best news
    Hi Betty

    Your news is wonderful in a sense that at least some oncs are trying to help us.
    You have one opened minded and caring ONC.
    Sorry you could not stomach oral glutamine.

    I have just discovered some amazing news for my own treatment. I feel a little foolish but more lucky than foolish. I am so glad I have a great naturopath.

    In all the supplements I take, one little powder by nutrition care called GUT RELIEF for intestinal health with cumerone.

    since chemo finsihed 5 weeks ago, I have backed off my diarrhea remedies as my gut has been better and I have been at first camping and then in hospital for the reversal. so my supplement regime failed a little here and there.

    my neuropathy was getting better, then it suddenly started getting much worse during my hospital visit as I went off all supplements. So now it turns out that my wonderful gut relief powder has been giving me L-glutamine and curcumin for the last 5 months since I started with the naturopath. that means I have been actually also having a good source of tumeric while on folfox to enhance its effectiveness. I have also been getting a source of l-glutamine and I suspect this has helped keep my neuropathy at bay without me realising it.

    I can guarantee my neuropathy has gotten so much worse over the last few weeks to the extent I can hardly do up my son school uniform buttons. And now co-incidentally since I drop using this product. Needless to say I have just had a 5gram serve ande will have a couple a day for the next week and see.

    I had felt the worsening neuropathy was unavoidable and that my goodluck had ran out. Luckily in the hours I have spent contemplating my treatments and supplements as I am housebound ( actually loo bound at present ) has enabled me to reflect on my symptoms that are so disturbing. The next few weeks to see if my neuropathy improves as I take this supplement with an open mind and hope.

    remember in a three week period going from hardly any neuropathy to really terrible neuropathy. My onc never prescribed cal/mag or glutamine as its not the standard here. I am so glad I have looked outside the box and had significant benefits I attribute to great naturopathic advice.

    The details of gut releif powder are below and I am so grateful I have been taking this product. so earlier in this post I said no to taking l-glutamine while on folfox, when in fact I could have said yes i did , but I did not know.

    goodluck with your colonoscopy tomorrow.

    hugs,
    pete

    http://www.purehealthdirect.com/products/products_details.php?products_id=2376
    Active Ingredients in Gut Relief by Nutrition Care
    Ingredient Qty
    Aloe barbadensis .5 mg/g
    Curcumin .6074 mg/g
    Glucosamine hydrochloride 100 mg/g
    Glutamine 500 mg/g
    Guar Gum 20 mg/g
    Pectin 20 mg/g
    Peppermint Oil 600 microgram/g
    Quercetin 40 mg/g
    Sodium phosphate - dibasic 52 mg/g
    Ulmus rubra 100 mg/g


    Specific Indications for Gut Relief by Nutrition Care
    Aids in maintenance and repair of mucous membranes

    Natural relief of symptoms of medically diagnosed irritable bowel syndrome and natural relief for the bloating, abdominal pain, cramping and discomfort associated with irritable bowel syndrome

    Relief of muscular aches and pains in the gut
    Soothe and protect the gastro intestinal tract
    Suitable for assisting upper and lower gastro intestinal health
    Supports gastro intestinal health
    Warnings (TGA) for Gut Relief by Nutrition Care
  • bingo THANKS BETTY JO that the best news
    Hi Betty

    Your news is wonderful in a sense that at least some oncs are trying to help us.
    You have one opened minded and caring ONC.
    Sorry you could not stomach oral glutamine.

    I have just discovered some amazing news for my own treatment. I feel a little foolish but more lucky than foolish. I am so glad I have a great naturopath.

    In all the supplements I take, one little powder by nutrition care called GUT RELIEF for intestinal health with cumerone.

    since chemo finsihed 5 weeks ago, I have backed off my diarrhea remedies as my gut has been better and I have been at first camping and then in hospital for the reversal. so my supplement regime failed a little here and there.

    my neuropathy was getting better, then it suddenly started getting much worse during my hospital visit as I went off all supplements. So now it turns out that my wonderful gut relief powder has been giving me L-glutamine and curcumin for the last 5 months since I started with the naturopath. that means I have been actually also having a good source of tumeric while on folfox to enhance its effectiveness. I have also been getting a source of l-glutamine and I suspect this has helped keep my neuropathy at bay without me realising it.

    I can guarantee my neuropathy has gotten so much worse over the last few weeks to the extent I can hardly do up my son school uniform buttons. And now co-incidentally since I drop using this product. Needless to say I have just had a 5gram serve ande will have a couple a day for the next week and see.

    I had felt the worsening neuropathy was unavoidable and that my goodluck had ran out. Luckily in the hours I have spent contemplating my treatments and supplements as I am housebound ( actually loo bound at present ) has enabled me to reflect on my symptoms that are so disturbing. The next few weeks to see if my neuropathy improves as I take this supplement with an open mind and hope.

    remember in a three week period going from hardly any neuropathy to really terrible neuropathy. My onc never prescribed cal/mag or glutamine as its not the standard here. I am so glad I have looked outside the box and had significant benefits I attribute to great naturopathic advice.

    The details of gut releif powder are below and I am so grateful I have been taking this product. so earlier in this post I said no to taking l-glutamine while on folfox, when in fact I could have said yes i did , but I did not know.

    goodluck with your colonoscopy tomorrow.

    hugs,
    pete

    http://www.purehealthdirect.com/products/products_details.php?products_id=2376
    Active Ingredients in Gut Relief by Nutrition Care
    Ingredient Qty
    Aloe barbadensis .5 mg/g
    Curcumin .6074 mg/g
    Glucosamine hydrochloride 100 mg/g
    Glutamine 500 mg/g
    Guar Gum 20 mg/g
    Pectin 20 mg/g
    Peppermint Oil 600 microgram/g
    Quercetin 40 mg/g
    Sodium phosphate - dibasic 52 mg/g
    Ulmus rubra 100 mg/g


    Specific Indications for Gut Relief by Nutrition Care
    Aids in maintenance and repair of mucous membranes

    Natural relief of symptoms of medically diagnosed irritable bowel syndrome and natural relief for the bloating, abdominal pain, cramping and discomfort associated with irritable bowel syndrome

    Relief of muscular aches and pains in the gut
    Soothe and protect the gastro intestinal tract
    Suitable for assisting upper and lower gastro intestinal health
    Supports gastro intestinal health
    Warnings (TGA) for Gut Relief by Nutrition Care

    This comment has been removed by the Moderator
  • pete43lost_at_sea
    pete43lost_at_sea Member Posts: 3,900 Member
    janie1 said:

    I was hoping glutamine was a
    I was hoping glutamine was a solution to neuropathy, or whatever I am having with the numbness in my neck and jaw. It wasn't a good week. I am supposed to have another trt. tomorrow. Don't know what to do. Decrease the amt. and slow down infusion time is what I'm thinking to do, thanks to those suggestions. Last week I read about the glutamine for neuropathy, but there was something about "ammonia" building up or something, i hestitated to buy any. Can anyone clarify or simplify that study Pete sent....i am overloaded and can't think. Pete, would u take the glutamine now if you were on Folfox....i'm even confused about the amounts to take.
    Also - I have a question. What over chemo drugs cause neuropathy, or is oxylaplatin the big one??? Thanks again for your knowledge and input.

    YES I WOUlD Tke l-glutamine
    I know it works for me.
    Let me know what you decide and how you are going.
    Am I a one off freak who is lucky or does this stuff really help us ?

    hugs,
    pete
  • pete43lost_at_sea
    pete43lost_at_sea Member Posts: 3,900 Member
    janie1 said:

    I was hoping glutamine was a
    I was hoping glutamine was a solution to neuropathy, or whatever I am having with the numbness in my neck and jaw. It wasn't a good week. I am supposed to have another trt. tomorrow. Don't know what to do. Decrease the amt. and slow down infusion time is what I'm thinking to do, thanks to those suggestions. Last week I read about the glutamine for neuropathy, but there was something about "ammonia" building up or something, i hestitated to buy any. Can anyone clarify or simplify that study Pete sent....i am overloaded and can't think. Pete, would u take the glutamine now if you were on Folfox....i'm even confused about the amounts to take.
    Also - I have a question. What over chemo drugs cause neuropathy, or is oxylaplatin the big one??? Thanks again for your knowledge and input.

    YES I WOUlD Tke l-glutamine
    I know it works for me.
    Let me know what you decide and how you are going.
    Am I a one off freak who is lucky or does this stuff really help us ?
    But as always check with your medical team about all supplements and treatments.

    hugs,
    pete
  • pete43lost_at_sea
    pete43lost_at_sea Member Posts: 3,900 Member
    unknown said:

    This comment has been removed by the Moderator

    dear graci
    so sorry my posts bring your frustrations to the fore.
    maybe some luck friends here will learn from all our experiences.
    yes 07 studies and not much else. no money in l glutamine i suspect.

    I always appreciate your comments.

    hugs and love,
    pete