neuropathy good news and bad news DON'T READ THIS IF YOUR HEAD IS IN THE SAND!!
Here I go again. Don't read this if you don't want to be frustrated about the truth of neuropathy re some pretty detailed research. the experiences of this board, are well a more accurate indicator of what to expect then our onc. Sadly I believe this seeing our comments and yes the implication that our neuropathy will get better one day just around the corner, oh if we live that long. The issues for survivorship in the bad news article is really well presented.
Cannot sleep, between loo visits I found these articles.
For existing suffers not good news, for people starting folfox some hope ?
Any comments ??????????
So lets start with some bad news. what the onc did not tell us !
Then lets finish with some good news. that our onc also did not tell us !
If you read these studies you may well want to ask some questions.
Please don't hold your breathe waiting for onc answers, as you may blackout waiting!
Yes my finger tips are numb while I type and I a going to ask about oral glutamine for the my stage of neuropathy.
hugs to all,
pete
BAD NEWS
Objectives. Oxaliplatin-induced neuropathy is a significant and dose-limiting toxicity that adversely affects quality of life. However, the long-term neurological sequelae have not been adequately described. The present study aimed to describe the natural history of oxaliplatin-induced neuropathy, using subjective and objective assessments.
Methods. From a population of 108 oxaliplatin-treated patients referred for neurological assessment in 2002–2008, 52.2% of the surviving patient cohort (n = 24) was available for follow-up at a median of 25 months post-oxaliplatin. Patients underwent a protocol that incorporated clinical assessment scales, patient questionnaires, standard electrodiagnostic assessments, and novel nerve excitability studies to precisely assess nerve function.
Results. At follow-up, 79.2% of patients reported residual neuropathic symptoms, with distal loss of pin-prick sensibility in 58.3% of patients and loss of vibration sensibility in 83.3% of patients. Symptom severity scores were significantly correlated with cumulative dose. There was no recovery of sensory action potential amplitudes in upper and lower limbs, consistent with persistent axonal sensory neuropathy. Sensory excitability parameters had not returned to baseline levels, suggesting persisting abnormalities in nerve function. The extent of excitability abnormalities during treatment was significantly correlated with clinical outcomes at follow-up.
Conclusions. These findings establish the persistence of subjective and objective deficits in oxaliplatin-treated patients post-oxaliplatin, suggesting that sensory neuropathy is a long-term outcome, thereby challenging the literature on the reversibility of oxaliplatin-induced neuropathy.
full article link below
http://theoncologist.alphamedpress.org/cgi/content/full/16/5/708
GOOD NEWS!!!!!
Oral Glutamine Is Effective for Preventing Oxaliplatin-Induced Neuropathy in Colorectal Cancer Patients
Wei-Shu Wanga,b, Jen-Kou Lina,c, Tzu-Chen Lina,c, Wei-Shone Chena,c, Jeng-Kae Jianga,c, Huann-Sheng Wanga,c, Tzeon-Jye Chioua,b, Jin-Hwang Liua,b, Chueh-Chuan Yena,b, Po-Min Chena,b
aNational Yang-Ming University School of Medicine, Taipei, Taiwan, Republic of China; bDivision of Oncology & Hematology, Department of Medicine, Taipei Veterans General Hospital, Taipei, Taiwan, Republic of China; cDivision of Colorectal Surgery, Department of Surgery, Taipei Veterans General Hospital, Taipei, Taiwan, Republic of China
Key Words. Colorectal carcinoma • Glutamine • Neuropathy • Oxaliplatin
Correspondence: Po-Min Chen, M.D., Ph.D., Division of Oncology & Hematology, Department of Medicine, Taipei Veterans General Hospital, Taipei, Taiwan, Republic of China. Telephone: 886-2-2875-7528; Fax: 886-2-2873-2184; e-mail: pmchen@vghtpe.gov.tw
Oxaliplatin is effective in the treatment of metastatic colorectal cancer (MCRC) patients; however, severe neurotoxicity develops frequently. To assess the efficacy of oral glutamine for preventing neuropathy induced by oxaliplatin, a pilot study was performed. A total of 86 patients with MCRC treated at Taipei Veterans General Hospital were enrolled. Oxaliplatin (85 mg/m2, days 1 and 15) plus weekly bolus 5-fluorouracil (5-FU; 500 mg/m2) and folinic acid (FA; 20 mg/m2) on days 1, 8, and 15 were given every 28 days as first-line treatment. Patients were randomized to receive (glutamine group; n = 42) or not receive (control group; n = 44) glutamine (15 g twice a day for seven consecutive days every 2 weeks starting on the day of oxaliplatin infusion). Efficacy of chemotherapy, neurological toxicity, and electrophysiological alterations were assessed. A lower percentage of grade 1–2 peripheral neuropathy was observed in the glutamine group (16.7% versus 38.6%) after two cycles of treatment, and a significantly lower incidence of grade 3–4 neuropathy was noted in the glutamine group after four cycles (4.8% versus 18.2%) and six cycles (11.9% versus 31.8%). By adding glutamine, interference with activities of daily living was lower (16.7% versus 40.9%), and need for oxaliplatin dose reduction was lower (7.1% versus 27.3%). There were no significant between-group differences in response to chemotherapy (52.4% versus 47.8%), electrophysiological abnormalities, grade 3–4 non-neurological toxicities (26.2% versus 22.8%), or survival. These data indi-cate that oral glutamine significantly reduces the incidence and severity of peripheral neuropathy of MCRC patients receiving oxaliplatin without affecting response to chemotherapy and survival.
full article link below
http://theoncologist.alphamedpress.org/cgi/content/abstract/12/3/312
Comments
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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.0 -
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.0 -
Oxaliplatin and L-Glutamine and Irenotecan
Hi Pete et al: My neuropathy disappeared one day after my first cycle (not to stay however that it won't come back with more treatments). I am taking L-Glutamine but only 500 mg twice a day ( couldn't remember why I was taking it! now I know). I'll up the dose maybe but 15 g is a lot of pills. Perhaps I can get it in liquid form. I'm having more problems with the Irenotecan - constant liquid diarrhea - no nausea - which means I'm taking Imodium every 2 hrs. I'm very disturbed that the oncologists are making so light of the neuropathy side effects of oxaliplatin. Surely it is something the drug manufacturer must work on if so many patients are reporting this uncomfortable side effect. I have asked specifically but was told only one of his patients, the dentist, has had a serious problem with it. But then it is not commonly used here due to its expense. Thanks for the interesting information!
Cheryl0 -
Craigjanie1 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.
Can u tell me how you took the magnesium sulfate? Seems like i searched that and there was something that stopped me. Seemed like there was some contraindication. Does it thin blood...is it like aspirin. Treatment is tomorrow and I am scrambling here
It would be great to nip this in the butt sooner better than never. It's gonna be up to me, the onc won't be much help. 0 -
correctionwestie66 said:Oxaliplatin and L-Glutamine and Irenotecan
Hi Pete et al: My neuropathy disappeared one day after my first cycle (not to stay however that it won't come back with more treatments). I am taking L-Glutamine but only 500 mg twice a day ( couldn't remember why I was taking it! now I know). I'll up the dose maybe but 15 g is a lot of pills. Perhaps I can get it in liquid form. I'm having more problems with the Irenotecan - constant liquid diarrhea - no nausea - which means I'm taking Imodium every 2 hrs. I'm very disturbed that the oncologists are making so light of the neuropathy side effects of oxaliplatin. Surely it is something the drug manufacturer must work on if so many patients are reporting this uncomfortable side effect. I have asked specifically but was told only one of his patients, the dentist, has had a serious problem with it. But then it is not commonly used here due to its expense. Thanks for the interesting information!
Cheryl
On my first post....i meant to say...What "other" chemo drugs cause neuropathy...or is oxyalaplatin the big one? thanks0 -
correctionwestie66 said:Oxaliplatin and L-Glutamine and Irenotecan
Hi Pete et al: My neuropathy disappeared one day after my first cycle (not to stay however that it won't come back with more treatments). I am taking L-Glutamine but only 500 mg twice a day ( couldn't remember why I was taking it! now I know). I'll up the dose maybe but 15 g is a lot of pills. Perhaps I can get it in liquid form. I'm having more problems with the Irenotecan - constant liquid diarrhea - no nausea - which means I'm taking Imodium every 2 hrs. I'm very disturbed that the oncologists are making so light of the neuropathy side effects of oxaliplatin. Surely it is something the drug manufacturer must work on if so many patients are reporting this uncomfortable side effect. I have asked specifically but was told only one of his patients, the dentist, has had a serious problem with it. But then it is not commonly used here due to its expense. Thanks for the interesting information!
Cheryl
On my first post....i meant to say...What "other" chemo drugs cause neuropathy...or is oxyalaplatin the big one? thanks0 -
this is negative regarding neuropathywestie66 said:Oxaliplatin and L-Glutamine and Irenotecan
Hi Pete et al: My neuropathy disappeared one day after my first cycle (not to stay however that it won't come back with more treatments). I am taking L-Glutamine but only 500 mg twice a day ( couldn't remember why I was taking it! now I know). I'll up the dose maybe but 15 g is a lot of pills. Perhaps I can get it in liquid form. I'm having more problems with the Irenotecan - constant liquid diarrhea - no nausea - which means I'm taking Imodium every 2 hrs. I'm very disturbed that the oncologists are making so light of the neuropathy side effects of oxaliplatin. Surely it is something the drug manufacturer must work on if so many patients are reporting this uncomfortable side effect. I have asked specifically but was told only one of his patients, the dentist, has had a serious problem with it. But then it is not commonly used here due to its expense. Thanks for the interesting information!
Cheryl
I am only telling of my experience because I believe some will always have serious neuropathy after folfox. I made it thru 7 and actually the neuro gets worst and I am two years from last infusion. I am interested in some of the things that others are taking and my onc acknowledged I had a severe reaction. But my feet thru ankles and hands to wrist have been affected and I even feel it in other parts of my body at times, but doable. I wish I had more knowledge before I took it to relay to the onc and ask about. So newbies do ask about some of these things.....and research before starting....Pat0 -
Pete, tho I"m not certain how I feel about the ideas on cancerjanie1 said:correction
On my first post....i meant to say...What "other" chemo drugs cause neuropathy...or is oxyalaplatin the big one? thanks
from the doctors (father/son)Burzynski-some of what I've read doesn't make sense to me--, nevertheless, in the written transcript of the video of them with Dr Mercola at
mercola.fileburst.com/PDF/ExpertInterviewTranscripts/Interview-Drs-Burzynski-on-Cancer.pdf
see page 12 on what they say of glutamine, that it should be avoided (if taken, I think they mean, as an isolated supplement).... Don't know who is right here.
Myself-i clear everything I take with onc first (and have since added urologist to mixture, who has had me stop taking DHEA and creatine, which,except during Tx,I'd consumed for years.......)0 -
"Janie"janie1 said:Craig
Can u tell me how you took the magnesium sulfate? Seems like i searched that and there was something that stopped me. Seemed like there was some contraindication. Does it thin blood...is it like aspirin. Treatment is tomorrow and I am scrambling here It would be great to nip this in the butt sooner better than never. It's gonna be up to me, the onc won't be much help.
They gave me "The Mags" by IV. I had never received it before but this day I was checking the labels on all of the bags hanging from the iv tree...I noticed one said Magnesium Sulfate.
The result was immediate for me. I could drink cold drinks w/ice the very night of the infusion. The tingling in my feet and fingertips got more bearable as well. I could grasp things cold for a few seconds instead of wearing gloves.
It does not work for everyone, but if you are the one of the ones that it does work for, it will really help you mentally and physically during the course of your treatment. It just puts a little more humanity back in your pocket, you know?
I cannot remember how long of a bag drop it is (length of infusion) and I believe they infused it separately from everything else. I believe I received this prior to the oxy infusion.
Many people I've talked to about this have said it worked for them as well. Sure won't hurt to talk to the onc about giving it a try...you should know pretty quickly from the first infusion if anything feels better for you. Probably will notice it more in your throat at first. The possibility of no more "room temp" drinks...worth a try? You bet!
-Craig0 -
Presentation
You certainly have a gift for wording posts that start off in an insulting and/or confrontational way Pete...
Am I the only person on this site who has an oncologist who tells me what to expect with the protocols I've been on? The information you provide is yesterday's news for the most part. Have many of the members in the colon cancer forum NOT been told that they can expect (some) neuropathy from oxaliplatin? Also, were people not warned that it could be permanent? I certainly was told of the potential side effects of the drugs. I had neuropathy for a while but it got much better over time by itself. Probably not what usually happens of course but that is my case. Lest we forget, chemotherapy is used to KILL cancer cells and unfortunately, if you want to make an omelet you may have to crack a few eggs in order to make one.
Here are some recent numbers to put some of this into perspective.
The American Cancer Society's most recent estimates for the number of colorectal cancer cases in the United States are for 2011:
-101,700 new cases of colon cancer
-39,510 new cases of rectal cancer
So that's roughly 140,000 cases a year.
Under Bad News:
"From a population of 108 oxaliplatin-treated patients referred for neurological assessment in 2002–2008"
Under Good News:
"A total of 86 patients with MCRC treated at Taipei Veterans General Hospital were enrolled."
So that's roughly less than 200 people. That's really not a huge sampling of cancer patients IMO.
I am by no means saying that glutamine can not be helpful. Below is some information that is not just an abstract from a medical study. I hope that some of you find it helpful.
~source of my information
Neuropathy, Arthralgia, and Myalgia
Several small studies support that taking glutamine may reduce the occurrence and severity of neuropathy, arthralgia, and myalgia among people who are taking chemotherapy medications that can cause these side effects. Most of these studies are not randomized, controlled trials, so they only suggest glutamine can help, but do not prove it will work to prevent and manage neuropathy, arthralgia, and myalgia. On a positive note, glutamine has a very good record of safety. As long as a person does not have contraindications to using glutamine (see contraindications below), it is generally well tolerated and safe. When using glutamine to try to prevent and diminish the severity of these side effects, keep the following key points in mind:
The effective dose appears to be 10 grams of glutamine powder, dissolved in water, taken three times per day.
For best results, glutamine should be used both as a preventive treatment before neuropathy, arthralgia, and myalgia have developed, as well as after these symptoms have developed, to minimize the severity of these side effects.
Contraindications & Cautions for Glutamine
Glutamine is considered safe for use by most people for the duration of cancer care (chemotherapy and/or radiation therapy) in doses up to 40 grams per day. However, like all dietary supplements, glutamine is not appropriate for everyone. There are some people who should NOT use glutamine because it may interact negatively with existing health conditions or medications being used.
Do not use glutamine if you:
*Have kidney failure, kidney dysfunction, or if your kidney function is impaired or abnormal.
*Have liver failure, liver dysfunction, or if your liver function is impaired or abnormal.**
*Have ever been diagnosed with or had a period of hepatic encephalopathy (liver function that affects your mental, emotional, or cognitive state).
*Have a history of mental illness, especially bipolar depression (manic depression), mania, or hypomania.
*Have a history of seizure disorders, such as epilepsy or are taking medications to control a seizure disorder.
*Have a history of allergic reaction to monosodium glutamate (MSG), a flavoring agent sometimes used in the preparation of Chinese food in restaurants.
*Are taking or have been prescribed to take a medication called lactulose.
Some of these potential interactions are theoretical, which means they may occur, but are not proven to occur. For this reason, be sure to discuss your individual situation with your health care team before you use glutamine during cancer treatment. Glutamine is generally safe for most individuals with cancer, but only you and your doctor, working together, can decide if glutamine is safe for you.
One additional concern with glutamine is the quality of the product. Independent researchers have confirmed that some glutamine products do not contain the ingredients as claimed on the product label or may be contaminated with other ingredients. If you do use glutamine, go with a good quality, pharmaceutical grade product such as Glutasolve by Nestle Nutrition (formerly Novartis Nutrition), Sympt-X by Baxter Healthcare, or Dymatize Pro Line Glutamine.
~end
** many of us do have livers that have been affected.
Be well all...
-phil0 -
Thanks for this info, too.PhillieG said:Presentation
You certainly have a gift for wording posts that start off in an insulting and/or confrontational way Pete...
Am I the only person on this site who has an oncologist who tells me what to expect with the protocols I've been on? The information you provide is yesterday's news for the most part. Have many of the members in the colon cancer forum NOT been told that they can expect (some) neuropathy from oxaliplatin? Also, were people not warned that it could be permanent? I certainly was told of the potential side effects of the drugs. I had neuropathy for a while but it got much better over time by itself. Probably not what usually happens of course but that is my case. Lest we forget, chemotherapy is used to KILL cancer cells and unfortunately, if you want to make an omelet you may have to crack a few eggs in order to make one.
Here are some recent numbers to put some of this into perspective.
The American Cancer Society's most recent estimates for the number of colorectal cancer cases in the United States are for 2011:
-101,700 new cases of colon cancer
-39,510 new cases of rectal cancer
So that's roughly 140,000 cases a year.
Under Bad News:
"From a population of 108 oxaliplatin-treated patients referred for neurological assessment in 2002–2008"
Under Good News:
"A total of 86 patients with MCRC treated at Taipei Veterans General Hospital were enrolled."
So that's roughly less than 200 people. That's really not a huge sampling of cancer patients IMO.
I am by no means saying that glutamine can not be helpful. Below is some information that is not just an abstract from a medical study. I hope that some of you find it helpful.
~source of my information
Neuropathy, Arthralgia, and Myalgia
Several small studies support that taking glutamine may reduce the occurrence and severity of neuropathy, arthralgia, and myalgia among people who are taking chemotherapy medications that can cause these side effects. Most of these studies are not randomized, controlled trials, so they only suggest glutamine can help, but do not prove it will work to prevent and manage neuropathy, arthralgia, and myalgia. On a positive note, glutamine has a very good record of safety. As long as a person does not have contraindications to using glutamine (see contraindications below), it is generally well tolerated and safe. When using glutamine to try to prevent and diminish the severity of these side effects, keep the following key points in mind:
The effective dose appears to be 10 grams of glutamine powder, dissolved in water, taken three times per day.
For best results, glutamine should be used both as a preventive treatment before neuropathy, arthralgia, and myalgia have developed, as well as after these symptoms have developed, to minimize the severity of these side effects.
Contraindications & Cautions for Glutamine
Glutamine is considered safe for use by most people for the duration of cancer care (chemotherapy and/or radiation therapy) in doses up to 40 grams per day. However, like all dietary supplements, glutamine is not appropriate for everyone. There are some people who should NOT use glutamine because it may interact negatively with existing health conditions or medications being used.
Do not use glutamine if you:
*Have kidney failure, kidney dysfunction, or if your kidney function is impaired or abnormal.
*Have liver failure, liver dysfunction, or if your liver function is impaired or abnormal.**
*Have ever been diagnosed with or had a period of hepatic encephalopathy (liver function that affects your mental, emotional, or cognitive state).
*Have a history of mental illness, especially bipolar depression (manic depression), mania, or hypomania.
*Have a history of seizure disorders, such as epilepsy or are taking medications to control a seizure disorder.
*Have a history of allergic reaction to monosodium glutamate (MSG), a flavoring agent sometimes used in the preparation of Chinese food in restaurants.
*Are taking or have been prescribed to take a medication called lactulose.
Some of these potential interactions are theoretical, which means they may occur, but are not proven to occur. For this reason, be sure to discuss your individual situation with your health care team before you use glutamine during cancer treatment. Glutamine is generally safe for most individuals with cancer, but only you and your doctor, working together, can decide if glutamine is safe for you.
One additional concern with glutamine is the quality of the product. Independent researchers have confirmed that some glutamine products do not contain the ingredients as claimed on the product label or may be contaminated with other ingredients. If you do use glutamine, go with a good quality, pharmaceutical grade product such as Glutasolve by Nestle Nutrition (formerly Novartis Nutrition), Sympt-X by Baxter Healthcare, or Dymatize Pro Line Glutamine.
~end
** many of us do have livers that have been affected.
Be well all...
-phil
Thanks for this info, too. As far as contraindications...i guess a liver would be abnormal if it has tumors, therefore glutamine would be a no-no. So people with liver mets shouldn't take. I never know how to take all the reports. I know my onc doesn't know.0 -
Thanks for this info, too.PhillieG said:Presentation
You certainly have a gift for wording posts that start off in an insulting and/or confrontational way Pete...
Am I the only person on this site who has an oncologist who tells me what to expect with the protocols I've been on? The information you provide is yesterday's news for the most part. Have many of the members in the colon cancer forum NOT been told that they can expect (some) neuropathy from oxaliplatin? Also, were people not warned that it could be permanent? I certainly was told of the potential side effects of the drugs. I had neuropathy for a while but it got much better over time by itself. Probably not what usually happens of course but that is my case. Lest we forget, chemotherapy is used to KILL cancer cells and unfortunately, if you want to make an omelet you may have to crack a few eggs in order to make one.
Here are some recent numbers to put some of this into perspective.
The American Cancer Society's most recent estimates for the number of colorectal cancer cases in the United States are for 2011:
-101,700 new cases of colon cancer
-39,510 new cases of rectal cancer
So that's roughly 140,000 cases a year.
Under Bad News:
"From a population of 108 oxaliplatin-treated patients referred for neurological assessment in 2002–2008"
Under Good News:
"A total of 86 patients with MCRC treated at Taipei Veterans General Hospital were enrolled."
So that's roughly less than 200 people. That's really not a huge sampling of cancer patients IMO.
I am by no means saying that glutamine can not be helpful. Below is some information that is not just an abstract from a medical study. I hope that some of you find it helpful.
~source of my information
Neuropathy, Arthralgia, and Myalgia
Several small studies support that taking glutamine may reduce the occurrence and severity of neuropathy, arthralgia, and myalgia among people who are taking chemotherapy medications that can cause these side effects. Most of these studies are not randomized, controlled trials, so they only suggest glutamine can help, but do not prove it will work to prevent and manage neuropathy, arthralgia, and myalgia. On a positive note, glutamine has a very good record of safety. As long as a person does not have contraindications to using glutamine (see contraindications below), it is generally well tolerated and safe. When using glutamine to try to prevent and diminish the severity of these side effects, keep the following key points in mind:
The effective dose appears to be 10 grams of glutamine powder, dissolved in water, taken three times per day.
For best results, glutamine should be used both as a preventive treatment before neuropathy, arthralgia, and myalgia have developed, as well as after these symptoms have developed, to minimize the severity of these side effects.
Contraindications & Cautions for Glutamine
Glutamine is considered safe for use by most people for the duration of cancer care (chemotherapy and/or radiation therapy) in doses up to 40 grams per day. However, like all dietary supplements, glutamine is not appropriate for everyone. There are some people who should NOT use glutamine because it may interact negatively with existing health conditions or medications being used.
Do not use glutamine if you:
*Have kidney failure, kidney dysfunction, or if your kidney function is impaired or abnormal.
*Have liver failure, liver dysfunction, or if your liver function is impaired or abnormal.**
*Have ever been diagnosed with or had a period of hepatic encephalopathy (liver function that affects your mental, emotional, or cognitive state).
*Have a history of mental illness, especially bipolar depression (manic depression), mania, or hypomania.
*Have a history of seizure disorders, such as epilepsy or are taking medications to control a seizure disorder.
*Have a history of allergic reaction to monosodium glutamate (MSG), a flavoring agent sometimes used in the preparation of Chinese food in restaurants.
*Are taking or have been prescribed to take a medication called lactulose.
Some of these potential interactions are theoretical, which means they may occur, but are not proven to occur. For this reason, be sure to discuss your individual situation with your health care team before you use glutamine during cancer treatment. Glutamine is generally safe for most individuals with cancer, but only you and your doctor, working together, can decide if glutamine is safe for you.
One additional concern with glutamine is the quality of the product. Independent researchers have confirmed that some glutamine products do not contain the ingredients as claimed on the product label or may be contaminated with other ingredients. If you do use glutamine, go with a good quality, pharmaceutical grade product such as Glutasolve by Nestle Nutrition (formerly Novartis Nutrition), Sympt-X by Baxter Healthcare, or Dymatize Pro Line Glutamine.
~end
** many of us do have livers that have been affected.
Be well all...
-phil
Thanks for this info, too. As far as contraindications...i guess a liver would be abnormal if it has tumors, therefore glutamine would be a no-no. So people with liver mets shouldn't take. I never know how to take all the reports. I know my onc doesn't know.0 -
I was told just about the same thingjanie1 said:Thanks for this info, too.
Thanks for this info, too. As far as contraindications...i guess a liver would be abnormal if it has tumors, therefore glutamine would be a no-no. So people with liver mets shouldn't take. I never know how to take all the reports. I know my onc doesn't know.
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.......Pat0 -
thanks philPhillieG said:Presentation
You certainly have a gift for wording posts that start off in an insulting and/or confrontational way Pete...
Am I the only person on this site who has an oncologist who tells me what to expect with the protocols I've been on? The information you provide is yesterday's news for the most part. Have many of the members in the colon cancer forum NOT been told that they can expect (some) neuropathy from oxaliplatin? Also, were people not warned that it could be permanent? I certainly was told of the potential side effects of the drugs. I had neuropathy for a while but it got much better over time by itself. Probably not what usually happens of course but that is my case. Lest we forget, chemotherapy is used to KILL cancer cells and unfortunately, if you want to make an omelet you may have to crack a few eggs in order to make one.
Here are some recent numbers to put some of this into perspective.
The American Cancer Society's most recent estimates for the number of colorectal cancer cases in the United States are for 2011:
-101,700 new cases of colon cancer
-39,510 new cases of rectal cancer
So that's roughly 140,000 cases a year.
Under Bad News:
"From a population of 108 oxaliplatin-treated patients referred for neurological assessment in 2002–2008"
Under Good News:
"A total of 86 patients with MCRC treated at Taipei Veterans General Hospital were enrolled."
So that's roughly less than 200 people. That's really not a huge sampling of cancer patients IMO.
I am by no means saying that glutamine can not be helpful. Below is some information that is not just an abstract from a medical study. I hope that some of you find it helpful.
~source of my information
Neuropathy, Arthralgia, and Myalgia
Several small studies support that taking glutamine may reduce the occurrence and severity of neuropathy, arthralgia, and myalgia among people who are taking chemotherapy medications that can cause these side effects. Most of these studies are not randomized, controlled trials, so they only suggest glutamine can help, but do not prove it will work to prevent and manage neuropathy, arthralgia, and myalgia. On a positive note, glutamine has a very good record of safety. As long as a person does not have contraindications to using glutamine (see contraindications below), it is generally well tolerated and safe. When using glutamine to try to prevent and diminish the severity of these side effects, keep the following key points in mind:
The effective dose appears to be 10 grams of glutamine powder, dissolved in water, taken three times per day.
For best results, glutamine should be used both as a preventive treatment before neuropathy, arthralgia, and myalgia have developed, as well as after these symptoms have developed, to minimize the severity of these side effects.
Contraindications & Cautions for Glutamine
Glutamine is considered safe for use by most people for the duration of cancer care (chemotherapy and/or radiation therapy) in doses up to 40 grams per day. However, like all dietary supplements, glutamine is not appropriate for everyone. There are some people who should NOT use glutamine because it may interact negatively with existing health conditions or medications being used.
Do not use glutamine if you:
*Have kidney failure, kidney dysfunction, or if your kidney function is impaired or abnormal.
*Have liver failure, liver dysfunction, or if your liver function is impaired or abnormal.**
*Have ever been diagnosed with or had a period of hepatic encephalopathy (liver function that affects your mental, emotional, or cognitive state).
*Have a history of mental illness, especially bipolar depression (manic depression), mania, or hypomania.
*Have a history of seizure disorders, such as epilepsy or are taking medications to control a seizure disorder.
*Have a history of allergic reaction to monosodium glutamate (MSG), a flavoring agent sometimes used in the preparation of Chinese food in restaurants.
*Are taking or have been prescribed to take a medication called lactulose.
Some of these potential interactions are theoretical, which means they may occur, but are not proven to occur. For this reason, be sure to discuss your individual situation with your health care team before you use glutamine during cancer treatment. Glutamine is generally safe for most individuals with cancer, but only you and your doctor, working together, can decide if glutamine is safe for you.
One additional concern with glutamine is the quality of the product. Independent researchers have confirmed that some glutamine products do not contain the ingredients as claimed on the product label or may be contaminated with other ingredients. If you do use glutamine, go with a good quality, pharmaceutical grade product such as Glutasolve by Nestle Nutrition (formerly Novartis Nutrition), Sympt-X by Baxter Healthcare, or Dymatize Pro Line Glutamine.
~end
** many of us do have livers that have been affected.
Be well all...
-phil
I just asked for comments ... and asked people to read if they want ... and to use the info as basis to ask any questions for their treatment.
we all have gifts and I appreciate mine and yours, in particular the info about avoiding glutamine products and liver damage which i was not aware of.
maybe we don't have to crack the eggs unnecessarily.
The point I got from the bad news article was the extent and impact of debilitating neuropathy many suffer. I am glad you were spared, i liked the detailed testing for the neuropathy, it sounded meticluous. these researchers are in Sydney and I will be calling them for any tips. I also liked the fact that onc appeared to under report the extent of the damage and its impact.
So I agreed without knowing the extent and likihood of permanent damage. the onc's say give it time, when the study implies time will not help. thats what got my attention and I thougth made it worthy to share here.
Suffering the side effects myself, looking for solutions myself, i come here for answers and advice. I put this up to generate feedback.
It maybe yesterdays news for some, but for me and a few others its new news and not really good. I just wanted to share it. PM me a different title if you want, I did not want to upset anyone else this time and I if people are leaving their heads in the sand then I suggest they skip this.
hugs,
Pete0 -
when the sand is warm and my wife crankySundanceh 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.
thats where my head is.
hi craig,
glad you only got a little.
Thanks pete0 -
Janiejanie1 said:Thanks for this info, too.
Thanks for this info, too. As far as contraindications...i guess a liver would be abnormal if it has tumors, therefore glutamine would be a no-no. So people with liver mets shouldn't take. I never know how to take all the reports. I know my onc doesn't know.
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.0 -
OXYpete43lost_at_sea said:thanks phil
I just asked for comments ... and asked people to read if they want ... and to use the info as basis to ask any questions for their treatment.
we all have gifts and I appreciate mine and yours, in particular the info about avoiding glutamine products and liver damage which i was not aware of.
maybe we don't have to crack the eggs unnecessarily.
The point I got from the bad news article was the extent and impact of debilitating neuropathy many suffer. I am glad you were spared, i liked the detailed testing for the neuropathy, it sounded meticluous. these researchers are in Sydney and I will be calling them for any tips. I also liked the fact that onc appeared to under report the extent of the damage and its impact.
So I agreed without knowing the extent and likihood of permanent damage. the onc's say give it time, when the study implies time will not help. thats what got my attention and I thougth made it worthy to share here.
Suffering the side effects myself, looking for solutions myself, i come here for answers and advice. I put this up to generate feedback.
It maybe yesterdays news for some, but for me and a few others its new news and not really good. I just wanted to share it. PM me a different title if you want, I did not want to upset anyone else this time and I if people are leaving their heads in the sand then I suggest they skip this.
hugs,
Pete
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!!!
Tom0 -
CraigTMac52 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 Craig, i will ask about "the Mags" in the morning. I'm getting tired of researching, so hope the dear onc knows about this, and can make a decision. Last week i talked to the chemo nurse about using a Cal-Mag infusion. She said they used to use that, but stopped, but didn't know why. She said she would call back, but didn't. Hope they know about the Mags. Seems like i always make suggestions, from what i get from all you fine people. Geezzzzz. Thanks so much.0 -
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 Marie0 -
janie1 I am so sorry for your sideeffectsjanie1 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.
My only advice is to diarise all your issues and the full impact on your life.
And let your ONC, surgeon and everyone in your care team know how your are suffering.
Your question re glutamine and folfox would I take it ? well possibly not!
you see my numbness kicked in just recently. while on folfox life was actaully really good except for diarrhea. see my endless posts about it.
Now if I was having serious side effects and I found this info then I would certainly have begged the onc about glutamine. I doubt I would have gone against her advice, I have not so far. I did not realise how common glutamine is.
As I am on nothing now, no chemo, I am considering taking it, still researching. lots of input little knowledge, just my experience which is as unique as yours.
God I wished the road to recovery was not so hard, when we get our lives back, I am certainly going to care for this body with tlc and appreciate everyday. Numb feet and hands or not, partiaLLY WORKABLE BOWELS or not.
yes I will probably end up trying glutamine as I am desperate with this neuropathy.
I will wait till my liver numbers improve.
hugs,
Pete0
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