Chemo neuropathy
 

Hi. I discovered this forum last night and spent the last 6 hours or so reading thru it till I confused myself:wink:

Thanks to the folks that run it. There is a ton of great info.

I have neuropathy in the toes and fingers from chemo that ended last December. It got worse about a month and a half after chemo ended. Minor in the fingers and after reading the forum I'm much better off than most. I didn't know anything about this before.

I've been on gabapentin since Feb. I absolutely hate it. I try to only take 300mg's a day. My prescription is that 2x's a day. I'm in a fog. I gotta get off this crap:(

I read thru the suppliment section and am wondering if I'm on the right track. Today, I bought Jarrow Methyl B12 5000, Doctors Best Benfotiamine 150 mg, Acetyl L-carnitine 250 mg and Magneseum 1250 mg.

I probably can't get tested because I'm on Medical but will ask. Reading about B-12 deficiencies, I'm a good bet

Using the Suppliment Sticky I'm looking at Methyl B12 5000 mcg once a day?
500mg Acytyl once or twice a day? 300mg Befotiamine once or twice a day?
Magnesium twice a day? I picked it all up this morning

Yup it's a newbie question:eek:

Is it better to take them all together or separate them through the day and to start with a lower dose?

I would appreciate any guidance as this is new to me. Being a regular on many forums I realize what a PIA it is sometimes to answer the same things, but I swear I read asw much as my brain could handle in my gabapentin fog;)

Thanks
Mike

Welcome to Neurotalk, Mike.

It sounds like a good start except the magnesium is high.

You should start off with 1/2 the RDA which is 200mg a day elemental.

It should be a quality magnesium chelate, or SlowMag (a chloride) and NOT magnesium oxide.

I don't know where you came up with the 1250mg? Now when some people are getting chemo there are some chemo drugs that deplete magnesium. This is usually monitored by the doctor since not all chemo drugs do this. Blood testing is done in those cases, and doses adjusted accordingly. I've seen people get huge magnesium IV during some chemos.

You are post-chemo in status. So please consult with your doctor before taking any high dose magnesium supplement.
You need good kidney functions, for all supplements, and I assume you have no impairments there? If so you need to discuss with your doctor dosing of all of them.

Thank you for the welcome and the info.

I had asked the clerk at the health food store for half RDA slomag magnesium and this was what she gave me. It's magnesium malate, but I saw your reply before I opened it, so I can return it. During chemo I received magnesium before and after the drip. I'm good to go other than this stuff and the gaba haze

One of the problems I have is that my Doctor really doesn't seem to know or isn't interested in anything other than just take the gabapentin. It's a county teaching hospital, their great but.....

I took 5000 mcg B-12 today, 2-250 mg acetyl l-carnitine and 2-150 mg Benfotiamine today on an empty stomach at once. Gave me heartburn and minor stomach discomfort. One thing I noticed was my urine wasn't yellow like with the B-100 I had tried from Dr Weil's site. Seem's like a plus;)

I hate taking anything including Advil. I'm thinking of simply starting with the B's or even just the B=12, but have to reread the b-12 info to see what starting dose is, because my bottle says to take one every 3-4 days

Thank you again

mike

My husband's PN is from drugs also. Alpha Lipoic Acid really helped his pain level. I cannot remember how much he took. I think 300 mg x2 day. They now have R-Lipoic Acid which is more potent so you can knock back the dosage. He noticed a big difference within about 2 -3 weeks. I think there's info on this on the stickys also.

The only nutrients he can take without food is the sublingual B12, Vit C and magnesium. Otherwise, he needs to take them with his meals. Especially the B complex. That will make anyones tummy turn.

Day-glo yellow urine from a B complex is expected so don't be alarmed by it.

Magnesium malate would have a total weight that is high.

This is very confusing to most people, especially doctors.

A typical magnesium malate (one that I have) is 1000mg per tablet. Only 150mg of that is the magnesium portion and the rest is the malate portion.

All dry powders of mineral chelates/salts typically are reported as total weight. Some labels will detail the elemental value of the mineral--in this case magnesium--and others will not.

I explain elemental values here:
http://neurotalk.psychcentral.com/post20739-10.html
This post is from this thread:
http://neurotalk.psychcentral.com/thread1138.html
It has grown pretty long, but there are interesting questions on it, and it is a very valuable subject, so please try to read it.

I don't think you need to return your malate at this point. If it causes loosening stools for you, that would be a sign that not all is being absorbed. The SlowMag is magnesium chloride, and 2 a day of those are usually enough for most people. But one can go up to 4 a day if needed, and if you have normal kidney functions.

HI Mike!
Welcome!
Sorry you have cause to be here; yet, this is a great resource if needed!:winky:
I hear you in the gaba haze. I cannot do gaba, at all.
I hope you can find your way off of the gaba as soon as possible!:)
Hope you learn all you need to know in order to fully heal!
See you around!
~DejaVu

I kept the magnesium. Taking 1 pill a day is a tad over 100% RDA, so I'm taking 1/2 twice a day

I have normal kidney function, but they discovered in all this that I only have one kidney. CT scan. never knew and there is no concern.

My stomach was better today and I separated things better

& Marlene Thanks for the Alpha lipic info. I have some and will look into the R version

:DThank you and I'm sorry I have to be here too;) But I'm hopeful , where a few days ago I was pretty frustrated. There is a ton of info here.

"Hopeful" is a great place to be! :D
We are all here should things look down a bit at any time!
Have a great day!:D
~DejaVu

I am really curious how Lance Armstong avoided neuropathy....or how he copes with it. He was nailed with major chemo and he seems to be better for it! (Not really, but, his recovery is astounding.) I wonder if the chemo ever causes autonomic neuropathy. I have seen AN in chest radiation patients, usually those who got radiation for lymphoma.....I actually diagnosed a case in one of my clients when I had the medical fitness center....I had read outs and given his medical history and his response to exercise....I figured out that was what he had and I sent him to the doc, and yep, that was it....then....I got the idea that it was also what was going on with me.....and yep....it was.:(

Lance is pretty amazing, but I'm also sure he had the best Doctors and nutritionists in his corner. There are things I learned since via the net that had I understood about PN might have helped

Competitive athletes typically use tons of supplements.

Also some chemo drugs are "worse" than others as far as neuropathy inducers.

Well my organic beets scared the heck out of me this week. :confused:

I remembered this year, that beets turn your pee red.....I forgot it turns your poo red....and everything else in the toilet bowl red....cripes! Sorry to get so graphic.....

My Diltiazem had me so constipated this last week that I almost croaked from the cramps(You are correct Mrsd).......

I looked before the flussssshhhh. Don't ask me why, but it took so much effort I thought it best to perhaps take one short glance at what I so painfully extruded....:o Just to make sure it didn't have a gender.....:eek:

OMG....quick.....get me to the ER....holy cow:eek:.....then my hubby says....,'Hey, didn't you eat beets yesterday?" Duh....:o

Maybe beets will 'eliminate' my neuropathy?? They have managed to disapate my dignity. I think I will sell the rest of them....

That would've scared the hell out of me, because thats what happened and led to the discovery of the tumor , only the color was darker.

I hate beets so I wouldn't have known. :eek:I haven't had one since the night my mother and I went to war over them at age 3. I won:cool:


Made it 52 hours the 1st day w/o gabapentin on the supplements, last 2 days have been a struggle at around the 20 hour mark. May need a vicodin tonite.

Realize it's gonna take some time, but it's a great start. I'm thinking there may be a withdrawal or rebound effect to cutting the gaba.

Will search here in a few, but am wondering at the moment about medical pot for PN pain. I have the card to get it, but I quit smoking cigarettes 10 years ago and don't want to reestablish that habit, so I'm willing to try it, but need to find the candies. Plus I'm not really into pot though it's probably better than vicodin:rolleyes:

I've been recommending this site. Really glad I found it. Thank you guys for all the help

It is really best to taper off gabapentin. Ask your doctor for an RX for 100mg to help you do this.

I am glad you are feeling hopeful. This is a good sign.

Actually my mood is much better since I started with the supplementation. Much more energy and positive attitude, leading to the will to fight LOL

The little Gaba I try to take has been a downer. I don't feel like doing much. To get up, i was doing a 12 pack of SPRITE a day. So I was getting up and crashing all day long. I've gained about 50lbs in probably a little over 4 months

I've had the will to fight the junk urge and have eaten clean since starting this. Only had 2 sodas in almost 4 days. I directly link this to the supplementation because it's given me "some" energy, which I haven't had since starting gabapentin

ROFL! :D Cyclelops! You keep me laughing! I am going to get suspicious about your meds! LOL!!!

Unstop... MrsD is right on... hope is a great thing!:D
As for the MMJ.. there are a few threads around on this topic.
Seems to have mixed reviews.:winky:

My Best to You!
~DejaVu

Found them. Thank you

Definitely feel more energy in spite of having to take vicadin last 2 nights. The problem is the burning has increased, but the cramping is less. I don't normally take vicadin for this, but it was instant relief.:D i took a gabapentin again this morning

This could be a good sign or bad, but maybe I need to back off and restart. Yesterday, I'd upped to the full dosages recommended: Metyl B12 5000, 500mg Acetyl-Lcarnitine 2x's,Benfotiamine 300mg 2x's, alpha liopic acid 200mg, Qunol C0Q10, Cod liver oil 2x pharm grade and magnesium

I'm also on the last dayof Amoxicillin. and I went swimming last 2 days and water tends to affect it for me. Not sure if clorhine might be an issue

Seeing as how I was taking a B-complex, Fish oil and CoQ10 prior to starting this, I was thinking about doing the Methyl B-12 and maybe the benfotiamine, fish oil, CoQ10 and magnesium for a few days and backing off the rest to see what happens

Any thoughts are appreciated

If burning is increasing, try rubbing in Biofreeze to the areas.
(if it is all over, just pick the most affected area)...

Biofreeze will block burning for hours. You can buy on the net, or from chiropractors, or PTs. There are some savings places that have it quite low in price. (I buy mine in 3's).

Start with one tube, and see how that works. I find after a few days, the burning lets up some. So you may not need it every day.

The magnesium is probably the major player in reducing the cramping.

I'll try biofreeze. Do you think backing off on the suppliments is a good idea or is this maybe a syptom of recovery? I'm realizing it's detective work

I think if you have no other symptoms from the supplements, that you should continue.

There are changes that may occur. Supplements are slow going. They are not like drugs. They slowly insert into systems that need them.

Basically I have not seen anyone have "negative" changes...enough to be concerned about stopping. There are NO changes, sometimes, for a time period...because the body has to adapt to having nutrients it was missing. Things sort of have to "wake up"...and get going again.

The biggest change is to your wallet. And I am not trying to be funny...but it is true. These are costly and many people cannot afford them. The supplements we all use here are very benign. But don't hesitate to report here...because we all learn from each other. I've used high dose supplements for 10 yrs, and I have no cancer yet... I am in my 60's.

Some nutrients... esp folate now... are implicated in "feeding cancers". The increase folate suggestions for young women have led to some increase in colon cancers. This doctor came on a thread recently and addressed this new concern:

http://neurotalk.psychcentral.com/post663808-20.html

This is the whole thread:
http://neurotalk.psychcentral.com/sh...ghlight=Metanx

This problem refers specifically to folate and cancer so far, and is pretty new.

I've talked to an oncologist, who was clueless about nutrients and chemo. And I've talked to a breast cancer patient who credits her survival to using flax oil during her chemo. So there are no real answers to everyone out there.

First off, thank you for all the time you've given to me over the last few days. I really appreciate it.:You-Rock:

I'm taking from your post and links that everything should be go to go. The Folic Acid is a concern as my tumor was colon and I get the pleasure of yearly colonostopies:eek: I don't think I'm taking it at all...am I?


Yeah the cost of suppliments is no laughing matter, but laughing makes the pain go away

it could be a symptom of recovery, many people who are reversing pn report pain similiar to what they had when the first got pn and it began progressing. sometimes this presents itself in periods of feeling better and then apparant regression with symptoms and then feeling better again and so forth. it is only after looking at it for a period of time you can tell if its that you were getting better. i would keep taking the supplements.

Cy, your 'description' was PRICELESS!
 

A friend takes LOTS of 'fiber' and such and there are 'back-ups' in the 'flushing systems'! Not fun....
Enough of that tho? Just eat well/healthy [not hyper so tho?] and do think POSITIVELY! Thinking positively about/cancer is the beater of it!
Folic is a good one for you and not to be ignored... go web it up? You'll be surprised at what IT can do, and more importantly, at this time what it mite be able to do for you.
Please keep us all up to date here on how you are doing? You've gotten a lot of response and we can all help each other! :hug::hug:'s!!!!!! - j

I saw that you were on an antibiotic recently. Have you been using a probiotic supplement to combat the effect of it and re-establish the good bacteria in gut?

Also, John would have increased activity/pain for a couple of weeks when he was in a healing mode. It would then settle down at lower pain level until the next healing event.

No, you are not taking the folate in high dose, unless you forgot to tell me so far. I'd keep the folate at 400-800mcg/day if you take a multi --it will be in there. We get folate from enhanced flour products, pasta and cereal now in the US.

Until this is more clearly explained, folate vs active methyl and which is the culprit and in what doses, we should all be moderate with folic acid. (methyl folate is the active form).

The doses that were implicated so far were above 2mg/day and more like 5mg/day.( in younger women who were taking it to prevent spina bifida in their babies).

Thanks `for the reminder. I started probiotic the day after I finished the cycle

No MrsD everything I'm taking I listed. Going to switch over to the R-liopic tomorrow.

It's been 1 week since I started this......I definitely feel improvement:grouphug::D

The crampiness is better and the lesser affected foot has periods of feeling normal. In some ways the other foot can be alittle more intense than before w/o as much crampiness at times but it feels like its improving as well.

I figure it will take some time, but I think I'm heading in the right direction. The plus is that even though I'm still taking the gabapentin, I'm starting to feel a little more energy or enthusiasm. Now doing the dishes doesn't feel like climbing Everest, but more like climbing Pikes Peak in an old Desoto

I like that analogy... I was limping along earlier this summer like that old DeSoto! The fins back then! Ahhhhh... you know there is a TV series set in the mid 60's called MadMen, on AMC...I've been watching those cars avidly. HEHEHEHEH.. Season 3 is on Comcast onDemand and season 4 starts next week! (I'll miss that because of our vacation, and hope they put it up onDemand too) When I was a little girl in the 50's, and teen in 60's I loved those old cars! They have great detail on that show, with all sorts of stuff from the 60's..the cars are great! I also enjoy the clothing, details. If you like nostalgia, you'll love MadMen! (MadMen stands for Madison Ave. Men...who began most of our advertising. It is very interesting to watch to see how they come up with ads etc)

You might find the d-ribose I am testing out useful too. It has really perked me up, I have to say.
Here is that thread:
http://neurotalk.psychcentral.com/sh...ghlight=ribose

My right ankle which has been killing me lately since spring, has finally started to go down...I've had 3 normal days in a row this week. The swelling is down, and the stabbing nerve quiet for now. I am pleased. But no guarantees in this PN life...so it may return. I will enjoy the peace while it lasts!;)
I am thinking the ribose is working!

My grandma had an old Desoto. Don't have cable so I haven't seen Madmen but heard it was great. I'll look into the D-Ribose. Hope you have an awesome vacation

Gabapentin
 

I was supposed to take Gabapentin 3 times a day, 600 mg each time. I was falling asleep standing up! I now only take it at night - 900mg. I see some difference over not taking it at all which I did for a week, so I continue the nighttime only program which my doctor approved. And, of course, I sleep like a baby. I also have tried acupuncture and electrical pulses, neither of which helped me at all. I'm pretty well convinced that the chemo damaged my nerves severely and they ain't gonna be getting any better but I keep plodding along doing whatever I can to enjoy life. Walking the golf course it out, but there are still carts:)

I caddied before this happened:eek: Now I'm extremely uncomfortable in shoes. so I'm not working at all.

i was instructed to take 300mg gabapentin 2xs a day, but it really brings me down. So I mostly was taking 1 at night and 2 when needed. Yours is much more severe looking at the dosage, but I do want to offer you some optimistc yet guarded hope;)

I'm not quite at the 2 week mark since starting this and I'm not taking the full dosage of supplements that I listed here. I'm not taking alpha liopic/R-liopic yet. i'm only taking 300mg benefiatimine, 500 mg acetyl L ....., 1 magnesium, CoQ10.

I've had 2 days where i needed Gaba 2x's and I'm on my second over 48 hour period without any. One of the days I needed a 2nd gaba, I slept for a few hours w/o socks on. A first since this started. I also am more upbeat since starting this so the supplements are helping my mood.

So I'm saying that maybe this regimen may lower the amount of gabapentin I'll need and hopefully eliminate it entirely. Personally, I expect a full recovery;):D Hopefully, if it's helping me maybe it'll reduce the dosage of gaba for you.

I'll post here either way so others can see what happens

And carts are the only way to play golf, because they have drink holders:D

Be Well

What was that funny-looking AMC car from the 70's that had a tendency to burst into flames on impact? That'd be me, or at least my feet.:eek:

Gabapentin: I was on 3600mg a day, and didn't notice a bit of sleepiness. One neurologist was heard to ask, "how is it possible that you're conscious?":)

Funny how we have such different reactions to these things.

The AMC Pacer or the Gremlin. The pacer looked like a fishbowl on wheels. It may be the ugliest car ever

You woulda made a great fighter. Nobody coulda knocked youse out:p

On another thread it was recommended to take CoQ10 AM and PM 100mg. I'm taking an Ultra high absorbtion buy Qunol. Says up to 6x's the absorbtion. can you take too much CoQ10? Think the Ultra High absorbtion thing is a gimmick?

Oh I'm on the 2nd 48 hour period in a row w/o needing Gabapentin(a first) and Week 3 starts today

Yeah, I thought it was the Pacer too, but I Googled "AMC Pacer fire" and didn't find any reference to that little problem.:confused:

But here's validation of your "ugliest" speculation: http://theweeklydriver.com/2010/01/2...rs-ever-built/

I'm not a good fighter, though...I punch like a girl in addition to throwing like one.

Oh yeah! The Pinto!:Bang-Head:

Thanks Kitt!

Update: On 7/31 I decided to try training on my own at a friends kickboxing gym. I had about 3 more times prior to that where I only needed Gaba every other day. Not saying I was doing great but it was an improvement. I had bad days as well

I was wondering if doing workouts that required a lot of movement of the ball of my foot and toes might increase circulation and aid healing. This is where most of my trouble is. I realize this is a risk

It's been back and forth. Some really bad, but almost always recovered enough to work out a little the next day. However last week was bad and I decided to take a few days off from the gym. I took Friday-Monday off. I took Gaba Thursday night and didn't need it again till late Monday afternoon. Almost 4 full days

I'm still only doing the supplements 1 time a day but will up it in the next few weeks.

Also started taking baths with Epsom salt as I'm sore. This may be helping my feet but the verdict like all of this is still out

I'm think I'm slowly improving

Epsom salts really help me. I buy them in bulk at Costco in fact! :D

If the ball of your foot really hurts, I'd make sure you get X-rays of that. The sesamoid bones are there and can move or crack or crush and cause alot of pain. Sometimes the tendon itself is the culprit. I had one steroid shot in my left foot for this years ago and it helped. Both of my feet have sesamoid bone damage, and my podiatrist told me to only walk in firm soled shoes...not spongey types. This prevents the bone fragments from moving around and inflaming the tendon sheaths more. Surgery for this is possible but he said may lead to a bunion down the road, so we manage it with Salonpas and conservative activities.