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Neuraphaty & Pain Management


Renate

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Saw the Neurologist today, he will make arragements for me to see a Pain Clinic. I asked him, what can they do for me. He said they could give me Steroids, I ask how long will that last. He said it depends, from 3 month - 3 years. I am desperate and must try eveything, since this disease seems to go fast to destroy me, not the Cancer.

The Neurologist said, it will not get better, but worse. You might not be able to dress yourself and eat without help.

I feel how my knee's let go, my hands can not hold a knife and fork properly anymore.

I have no symptoms of Long Cancer at all. I am asking myself : Will I die from LC or the Neurapathy?

I can not tell or express my anger, about my situation. When you read about side effects,do you think they will last forever ? Tingling, stabbing. What do you think?

I thaught this is just during the Chemo and will go away. I complained after the very first Chemo, he decreased the Taxol, I complained a lot more after the 2nd and 3rd the Onco said only one more. After the 4th I said that's it. By that time I was already on Painkillers, Morphine Lyrica and my life was gone.

Onco wants to put me on Avastin until something pops up. I said no, I wait until something pops up without the Avastin.

He said: I am sorry and left the room

I am more than depressed, angry und very upset.

Renate

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the best I can offer for advice on Neuropathy is to do a search for Ernrol (Ernies) Posts. He has benn having some success with Neuropathy right now in forms of extra supplements I believe. Hugs and Prayers and Thoughts For Ya and hope this helped a little bit for the moment!

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I can hear your pain and frustration. I don't understand or like your neurologist. Why would he tell you that. I didn't have neuropathy but I know people on the site have and it has last for varying degrees but it has gone away. I don't understand how he can tell you it's only going to get worse and will not get better once you are off the chemo.

It wasn't like what you are dealing with but I can relate with my experience with Avastin. I was having raging headaches I eventually found out were probably from the Avastin in my chemo cocktail. By the time I went into remission and they put me on Avastin maintenance I was spiking stroke-time blood pressure levels. I was really mad and didn't want to do it but my doctor promised to level my bp and told me to stay on the treatment. He did and I did. Your doctors don't appear to be handling this with a lot of understanding or compassion. Get mad but maybe also get a second opinion on the neuropathy.

I really am so so sorry you are having to go through this. Please come here and vent and get any info you can from people who have been through it.

Judy in Key West

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(((Renate)))

I agree - read about supplements and maybe it is time to get a second opinion?? Will your insurance pay for that.

You know I really am so sorry you are giving up on the chemo - you are my friend and I only want you to feel better. You had told me you might try acupuncture - have you checked into that yet??

Vent, vent away if it makes you feel better and you know my email, my friend. And you know we have vented to each other and can continue to do so - I want to help you if I can just like you have helped me!!

Hugs to my friend - Patti B.

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Hi Renate ... I'm usually not high on the list to help someone on the site technically-speaking, but ... I think I can help with this.

Ernie (I believe his last name is Puckett) is a real inspiration on this board. He's kept excellent records of his journey and everything he's done (both traditional treatment-wise and "natural" supplements) and he's just a wonderful person in general.

If you're on the message board, along the top you'll see various options ... under How To Help is an option for "Memberlist". Click on that and the same options are still on top; then click on the "Search" option and in the first box on the right hand side, type in "ernrol". This is Ernie's screename. From there it will give you his profile and some basic information. It will list his number of posts (probably over 1,000 I'd guess). Then click on "find all posts by ernrol" and you can go from there.

Good luck to you.

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Renate gonna drop some info for Ya

1) from Jackie

Vit. B-2 100mg a day

Vit. B-6 100mg a day

Vit. B-12 100mg a day,

it could be increase to your needs

but works better it the mg are the same

all the Vit.

Also the doctor could give you

Gabapentin or Neurotin it works well

on neuropathy.

2) From Ned

It was Neurontin (generic: gabapentin). I describe my bout with neuropathy about 3/5 through my profile. I'm still on a reduced dose, and there's still a small amount of residual numbness in the toes but no more tingling or loss of leg muscle control. It's the worst side effect I had with Taxol, and I feel very fortunate that the Neurontin worked quickly for me.

3) from Ernie

You know that I take a lot of supplements. I can’t say which may help. I had Taxol my first round back in 2005. I have had Taxol going on this time into my 6th month. I do stop some supplements within 24 hours of chemo. I also started acupuncture once a week. The neuropathy has not increased much since then. I think both MD Anderson and Mayo have done some acupuncture along with chemo. I am only bothered with neuropathy in my left hand and my right foot especially the little finger, but it is just numbness and is not much trouble at all. B-6 and B-12 are two of the supplements that I take.

Stay positive,

Ernie

4) From Karen

I've had some neuropathy from low B12 which has improved with sublingual mega-doses of b12 (5000 mg I believe). I know when people have really low B12 that they can get B12 injections from the doctors office. I don't know if this is the same type of neuropathy as you are experiencing but it would not hurt to try. (Your body can't get too much of the B12, whatever is not used is excreted.)

Hang in there bud!

Karen

_________________

Hope this helps some for Ya!! Hugs adn Prayers Randy

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Renate-

I really don't know much about supplements and neuropathy since I have not yet experienced that but I do know that some of these board members, Ernie being one, are total inspirations to us all and have so much knowledge. I am just hoping and praying that you can find some relief.

The easiest thing for you to do to find Ernie, is go to Time Tests/Updates. He last posted there on May 21st. Then you can PM him from on the bottom of his post.

I see Randy has given you a heck of a lot of good information from some of our other members, too. Hope you can get help from someone soon to relieve the pain.

Your friend - Patti

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Don't mean to highjack this thread but thanks to tiredmom. I figured out how to do the search for people but had a rough go of it--it didn't always work but now at least I know I was doing it right. Maybe getting the screen name wrong.

Randy, great job, and Patti, that's the method I resort to when the Search doesn't work. But dummy me, sometimes I have a terrible time finding the recent post.

Judy in Key West

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Oh Renate. My heart goes out to you and all you are going through. The pain docs at cancer clinics should be able to help though. It is all about finding your "breakthrough" meds as I learned when going through severe back pain for spine mets. I hope you get some relief soon. It just sucks big time that nice people like you have to suffer. Hang in there and take good care

Sandra

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Renate, I would simply choose not to believe that neurologist who said the neuropathy could only get worse. Many of us have proved otherwise, and why should yours be different? He should have had a "maybe" or two in there somewhere. When yours does get better, do you think he will apologize? I doubt it, but "maybe" he will.

Thanks to Randy's work I noticed for the first time that Ernie had used acupuncture for his neuropathy. Previously I had only been aware of the supplements he had used. Since you've used acupuncture before and seem to be comfortable with it, I think it's worth checking out for your neuropathy.

Aloha,

Ned

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Ned,

You are right, this Neurologist should have said, a few mayby's. I will see another Neurologist 7/2 and hear what he has to say.

You know I am not very familiar with the board and I could not locate Ernie's post's.

Pattie B. told me the easiest way, but could not find it. Maybe you can sent me a PM

with the link. I would appreciate it very very much.

I have an appointment with a Pain Clinic next week and hope they can help with the pain at least.

And Acupanture is also on my mind.

Thank you Ned.

Renate

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Hi Renate,

Sorry to hear about your situation. I tried B6/B12 and it did help for awhile with my Neurapathy. If you haven't already ask about Gabapentin (Neurotin) it really has helped me. I'm on (no side effects) 800MG, 3 times a day. Does not go away completely but does make a big difference. I was also surprised how fast it worked. Some have tried Acupuncture with good results. Below is a link with some good info that I hope will help you. Prayers for the best. Rich

http://chemocare.com/managing/numbness__tingling.asp (Side Effects - Symptoms & Solutions)

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Hi, Renate.

One depressing fact that many of us have been forced to learn following our dx is the truth of the statement, "If the cancer doesn't kill you, the cure will. :(

I have not suffered from neuropathy, but empathize fully due to the multitudinous side effects I have experienced from taking Prednisone (to counteract radiation pneumonitis which I developed following radiation treatments).

I, too, cannot imagine a neurologist making the statements yours did, and applaud you for seeking second opinion!

Best of luck to you,

Carole

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Hi Rich,

I am taking B12 and have tried Neurontin. It stops the stabbing and tingling. You are taking a very high dose of Neurontin. I am on Lyrica now, it works better for me.

Renate

Hi Carole,

I have read your entire Profile and must say you went through a lot of side effects.

You said you have no symptoms or any pain, neither do I. My Onco put me on a research progrom, for people with LC and no side effects. But sooner or later something will pop up.

Renate

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