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24 hours results, I can type without lead fingers, neuropathy alot better

pete43lost_at_sea's picture
pete43lost_at_sea
Posts: 3908
Joined: Nov 2010

My neuropathy is alot better after 30 hours of heavy dose l-glutamine.
Some feeling in my feet now, none before.
My fingers feel alot better.
I am feeling alot better, not sure why but glad to have some relief. the way my neuropathy
was getting worse really worried me.

so just recapping, about 30 hours ago, while soaking in the bath at 2am contemplating life between the 100-200 loo trips a day that my recently reconnected bowels are causing I had a moment of insight.

the one supplement I had not recommenced was my gut relief powder for diarrhea. whats the point I thought, no more diarrhea , no more chemo. well I read the container, the gut relief powder is 50% l-glutamine. I have been taking l-glutamone now for 5 months, maybe thats the reason my oxi symptoms were so mild, maybe that the reason why when I went off it the neuropathy got so much worse. maybe now I am back on it only 30 hours and I can sense an improvement.

just wanted to share my joy that this cursed neuropathy for me at least is getting noticably better. its raised my spirits and given me hope.

I am allowed to experiment on myself based on my research. good luck with your neuropathy. maybe we don't have to live with it after all, or at least make it a bit more bearable.

hugs and good health,
Pete

this is what helped me
http://www.purehealthdirect.com/products/products_details.php?products_id=2376
this is the benefits glutamine
http://www.mens-total-fitness.com/benefits-of-L-glutamine.html

AnneCan
Posts: 3692
Joined: Oct 2009

I am glad your neuropathy has improved.

pete43lost_at_sea's picture
pete43lost_at_sea
Posts: 3908
Joined: Nov 2010

thanks anne

tootsie1's picture
tootsie1
Posts: 5056
Joined: Feb 2008

I'm glad it's so much better for you!

*hugs*
Gail

wolfen's picture
wolfen
Posts: 1326
Joined: Apr 2009

So glad this is working for you. I know how painful and devastating this stuff can be. Not for myself of course, but for my JBG and my diabetic husband. It's too bad there isn't just one thing that works for all sufferers, but hopefully each person will find something that will work for them.

Luv,

Wolfen

pete43lost_at_sea's picture
pete43lost_at_sea
Posts: 3908
Joined: Nov 2010

thanks wolfen, I guess all we can do is try and if at first we don't succeed then try try again.

pete43lost_at_sea's picture
pete43lost_at_sea
Posts: 3908
Joined: Nov 2010

thanks gail

plh4gail's picture
plh4gail
Posts: 1238
Joined: Oct 2010

Hi Pete...so glad your neuropathy is doing better! I am taking glutamine also along with a truck load of other vitamins and supplements hoping something in my mix helps it. I'm talking this neuropathy is A N O Y I N G... if I don't take something to make me sleep at night the covers touching my feet keep me awake. ugh and ew. Ok friend and buddy....take care

Love, Gail

Ps...what about the diarrhea? any improvements?....and boy is my brain messed up! Thinking and memory are in the pits :(

westie66's picture
westie66
Posts: 642
Joined: Jun 2010

Hi Pete and all: I started taking L-glutamine before my treatment with oxaliplatin started and so maybe that is why it didn't take hold (yet!). Now, I'm only taking one 500 mg pill morning and another one at night. Should I up the dose? I know the article that was posted on this discussion board a few days ago said the patients were given something like 15 grams of the stuff. My efriend, Lily, who got neuropathy from cisplatin chemo for gallbladder cancer still takes it 5 years later (she takes the same dose as I've described). The bottle I have says take 5 pills 2 to 3 times a day for fibromyelgia. That seems a lot but it isn't expensive.

And, wow, lomotil worked for me. The nurse was over yesterday, got a prescription, it was delivered, and one pill did it in combination with the BRAT diet. I have a plan!

Cheryl

pete43lost_at_sea's picture
pete43lost_at_sea
Posts: 3908
Joined: Nov 2010

dear gail,
i wonder who has the biggest truckload ?
I had the covers on the feet issue in hospital a little.
I am so sorry you have been so badly effected.
I am having 2.5g glutamine about 4 times a day in my gut relief powder.

the bowel problems are all to do with reconnection issues, not diarrhea. more like constipation and doing 100's of little poos. the gas feels like poos. painful phantom contractions, painful defecating when it happens. its also unpredicable.

I could not even watch a movie tonight with wife, as I went about 12 times and even now I won't get mutch rest tonight. Are but this is just another bump on the road to recovery.

today was a lovelly day in some ways. I hope yours was good and we all find relief from our troubles. boy when we look at this board, most of us have some serious issues to contend with on a daily basis from medical to emotional.

I'll do a post about my current post chemo supplements, these are costing a bundle but I feel they are worth it.

hugs and love,

Pete

Kenny H.'s picture
Kenny H.
Posts: 503
Joined: Aug 2010

Glad your getting back to some normalcy Pete. Neuropathy still bad in my hands mainly, fingers totally numb. Hard to do some small tasks, will give the Glutamine a try. Wonder how long this will last? My last chemo was April 5th.

pete43lost_at_sea's picture
pete43lost_at_sea
Posts: 3908
Joined: Nov 2010

i hope so.
hugs,
pete

relaxoutdoors08
Posts: 520
Joined: May 2011

Pete and Kenny,
I finished chemo April 7th and the neuropathy is my worst problem now. Worse when the weather is cold with high humidity. My hands and feet feel numb and tingling. I also have had a twisted ankle walking on uneven ground and slipped in the shower due to numb feet.

I am hoping this will get better with time and I am reading your responses. I will ask about using glutamine when I see the Onocologist at the Mayo in July when I am scheduled for my next scan. I had high liver readings so my last two chemo's were at 80%. I am very careful about taking anything until my liver readings return to normal.

I appreciate the feedback from all of you.
NB

pete43lost_at_sea's picture
pete43lost_at_sea
Posts: 3908
Joined: Nov 2010

well i have been so focused on fixing my liver function after chemo ie see SAMe post and milk thistle, beet juice and diet.

my numbers were improving slowly. ie ast alt ggt

i am waiting another week for my monthly blood test for vit d3 and liver function, due next week. also focussed boosting wbc white blood cells.
i hope they improve, not expecting much due to anti biotics.

i disregarded my liver numbers and have upped the glutamine now i realise i have a good source of it in gut relief powder and that it also helps rebuild my bowel function that is incredibly painful.

let us know how you get on, even your onc response is of value.

goodluck,
pete

Annabelle41415's picture
Annabelle41415
Posts: 6554
Joined: Feb 2009

Glad that you are feeling better. It's a lot better when you can feel things.

Kim

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pepebcn's picture
pepebcn
Posts: 6352
Joined: Aug 2010

2 years since I got it!

Kenny H.'s picture
Kenny H.
Posts: 503
Joined: Aug 2010

I went to get my port flushed today and asked the nurse there about numb fingers ect. They had Onc call in Neurotin prescription. (Gabapentin generic name)

Has anyone taken this? I am to take 100mg 3x a day. Did some reading on this drug and its mainly used for seizures and epilepsy treatment. Also post surgerys were nerve damage has accured. Side effects include dizzyness, drowsiness mainly. Also you cannot stop using it abruptly, must gradual lower dosage. Wondering how strong these side effects are since everyone reacts differently.

pete43lost_at_sea's picture
pete43lost_at_sea
Posts: 3908
Joined: Nov 2010

goodluck kenny.
keep us informed of how you are doing and you can notice improvement.
hugs,
pete

pete43lost_at_sea's picture
pete43lost_at_sea
Posts: 3908
Joined: Nov 2010

2 year old, that sux.

hugs,
pete

traci43's picture
traci43
Posts: 775
Joined: Jul 2007

My nutritionist has recommended glutamine powder in my water, but I keep forgetting to add it in. This is a great reminder that I should be doing it. I'm not on a platinum-based regimen at this time but am feeling left over effects, especially in my ankles right not. I'm heading to the kitchen for some l-glutamine water right now!

pete43lost_at_sea's picture
pete43lost_at_sea
Posts: 3908
Joined: Nov 2010

i really hope it helps, let us know either way.
we need facts, good news and bad. at least we know how well these supplements may help.
certsainly better than just living with it.

hugs,
pete

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