The Colon Club

Hello.
I read on here and elsewhere that L Glutamine can help with neuropathy and digestive issues while on chemo. I asked my Oncologist about it last week and his PA gave me permission to try it - but gave no other information (save a warning that it may cause stomach upset). Has anyone used L Glutamine on chemo and what has been your experience - short and long term? And when did you start it and how much did you take? Any form preferable to others?

I have used Glutamine before - in 2003 and 2010. A Holistic MD prescribed Metagenics L GLutamine to heal my leaky gut (and my symptoms disappeared - so I do believe it did its job), so I have experience with the supplement (but NOT while on chemo). I don't recall the amounts I took.

I am on FOLFOX and I have Round 6 (of tomorrow morning so it may be too late to help with neuropathy issues, but I still hope it can help heal my gut (though I'm not sure when is best to do this, given I have radiation next and then surgery).

Thanks for any tips! Hope everyone is having the a good day.

Hi
I took l glutamine as recorded my my oncology naturopath. I did 1 scoop of powder in water once daily starting the day before each treatment through the day after treatment. She said not to take it in between treatments. I noticed an improvement in neuropathy. I purchased it at Whole Foods.

I took L-Glutamine along with a handful of other supps and small doses of CBD and THC during my entire chemotherapy treatment.

So I can't say for certain whether any one thing did anything or whether or not they did anything at all - HAH.

But I am 9 months out of therapy and have virtually ZERO neuropathy. I don't even get tingling in my feet anymore with sizzling hot showers.
So it's supposed to help with that - and perhaps it did but so does the CBD and THC supposedly.

I did have copious amounts of diarrhea starting about day 5 after infusion (steroids wore off) until next infusion. I don't know if any of my supps had anything to do with that either.

but there you go.

Thanks BenBen and KoreySue.

BenBen - that is SO great that you have ZERO neuropathy! I wish I had known some of this stuff when I started (such a steep learning curve though). I can't believe my doc doesn't suggest it to begin with, if they approve it now.

BenBen - What is CBC and THC and how did it help? Also, I see your Ox was reduced. Mine was reduced to 50% after Round 3 b/c my hand and leg cramping was so extreme. I am now back up to 65%.

Thanks!

lakeswim wrote:BenBen - What is CBC and THC and how did it help? Also, I see your Ox was reduced. Mine was reduced to 50% after Round 3 b/c my hand and leg cramping was so extreme. I am now back up to 65%.

Hi Lakeswim. CBD and THC are extracts from the marijuana plant. I used edible forms of these so as not to introduce irritants into my lungs via the typical implementation of smoking or vaping.
It is legal in the state of Washington.

I did have Oxi reduction due to extreme neutropenia. Talking ANC counts of like 300 even 14 days out sometimes. So they reduced the oxi and introduced zarxio shots to force the bones to produce more white blood cells. After 7 rounds they dropped the oxi completely and went 5FU only as not only was neutropenia an issue but so was low platelet levels as well as the actual morphing of my platelets.

best of luck to you!

I used Alpha lipoic acid and glutamine from a day or two before infusion to a few days after - prob 5-6 days each cycle. I usually took 15 grams of glutamine powder mixed in water twice a day and 2 - 500 mg pills of ALC twice a day. Plus 100 mg of B6 to protect against Hand Foot Syndrome, which I never got.

I was a bit more concerned about the calcium magnesium combo, as it's been a little controversial. It used to be a standard part of treatment based on a study showing it reduced neuropathy but it's been pretty much discounted as being effective against neuropathy and one study then seemed to show it reduced chemo effectiveness. Then that study was discounted. Perhaps it really was a zero sum game as the general consensus (and my oncologist) has it nowadays but I'd been taking magnesium and calcium anyway so I upped it to the old doses of 1 gram (1000 mg) of each immediately prior to infusion on the day of chemo only.

I do recall that I heard / read any antioxidants were counterproductive to chemo, as they may "protect" the bad cells from intentional damage by the chemotheraputic agents, whose job it is to damage the "bad" (cancer) cells. I did avoid vitamin C in supplementation form.

I don't know whether any of this truly makes a difference, or just helps give us a sense of control during a frightening time. I'll also say I 100% believe there is no 100% one-size-fits-all solution and everyone's causes, treatments and results are going to vary based their individual biology and genetics.

But so far, my outcome has been good and I'll take it. I'm not far enough out from treatment to comment about the overall effectiveness the other ones I took more for their "anti-cancer" (Curcumin, PSK, Celixicob) and "anti-metastatic" (cimetidine, modified citrus pectin) properties but for the above mentioned four I took specifically to address potential neuropathy, whether I was just lucky or not, I can state it 100% worked and I am one of the lucky ones with no lingering symptoms.

On the advice of my Dr's NP I started taking L-glutamine pretty early on in FOLFOX to ward off neuropathy. Maybe after Cycle #1? She said to take 10 grams of powder per day in water. She also suggest a B-complex 100 cap per day. I admit that occasionally I forget to take the glutamine.

I also upped my usual intake of Omega-3 fish oil capsules, which I was already taking for triglycerides, since there is some evidence that that might help also. I recently decided to start taking ALA again, something I did years ago when first diagnosed with T2, because my blood sugar readings are taking a severe beating from chemo, the steroid being the likely main culprit.

I have had no nausea so far--infusion #7 tomorrow--and although I do have the usual cold sensitivity, it wears off as the cycle continues. Honestly, when people speak of "neuropathy," I don't know whether they mean the pins and needles from cold sensitivity, but all the time, or some other kind of thing.

Perhaps someone who has had both can clear that up?

For me, the pins and needles sensitivity to cold was an immediate side effect of the oxy, wearing off over the course of several days. The neuropathy that I have is a numbness in my fingers and toes that peaked in intensity about two to three months after my chemo was all done. I still have a tiny bit of numbness in the tip of my fingers and pretty annoying, but tolerable, numbness from mid-foot though my toes. I am two years out from chemo... Is there a chance glutamine would help after all this time? My doctor never mentioned it unfortunately... Only recommended B-12 which she still has me take. I wish I had been on this forum back then.
Thanks!
Margie

After having a discussion with tupelo honey a number of months back when my husband was starting chemo, I started including L-Glutamine in the milieu of supplements I give him. He takes 500mg every other day. He didn't have much neuropathy at all. Only after round three and four after his Oxi infusions and it went away after about 5 days or so both times. He only did four cycles/rounds because that is the amount his oncologist wanted him to do in between his colectomy and liver surgery.

I take 100 mg B-6, 100 mcg B-12, and L-Glutamine. The B-vitamins were as a result of a post by a nutritionist at Dana Farber. The L-Glutamine is as a result of a study done in Taipei over ten years ago. My oncologist does not see how L-Glutamine can help, but he said that he would "look the other way" if I were to take it.

I take 15 g of L-Glutamine twice a day for 7 days starting on the day of each infusion. I've had two cycles of FOLFOX so far. I do get First Bite Syndrome (chemo jaw as some call it). I have not yet experienced hypersensitivity to cold. The only sign of neuropathy that I have is some sensitivity and pain in the big toe of my right foot. A nerve leading to this toe is being impinged on by a small growth in the arch of the foot. I believe that the increase in sensitivity caused by the oxaliplatin is causing the nerve to react.

Rich

I have not started the glutamine as I'm afraid of (more) stomach upset. But, just this recovery week (after 6 of 8 rounds), I have a numb spot on the top of my left foot near my toes. So, I wish I had known about it before I started too.